The Stockwells in Colorado!

Pretend Play

2012-02-01T19:34:00.000-08:00

One aspect of the DSM IV criteria for autism looks at pretend play, specifically "lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level".
Obviously there are a bunch of other aspects mostly involving social and language development and interaction, but, this is one that stands out for me particularly, because, when Tom was diagnosed at age 2, he had none. Nothing.
Now, I can honestly say his pretend play is fantastic. He's such an imaginative little boy.
Here is a picture taken last night of one of his lego creations (completely independently).

"Dad! Look! My pilots are having a briefing!"

Tom watched Star Wars yesterday for the first time in a few weeks. Can you interpret this scene? My husband picked it out immediately, but then he is an intelligence officer. Yes, the 'pilots' are getting a 'briefing'. Yes, he used those words. Jeff's so proud.
But, this one little nugget aside, his pretend play is probably on track for his age, if not advanced. That's not just me being a delusional parent either, his BCBA comments on his play skills being advanced, even for a typical child. So, on this aspect, we've come a long way.

His play skills have been developed in a few ways, but always so that functional play was a part of it. For example, he loves trains. He doesn't however just push trains around a track. They have parties, go on adventures and now, the trains have merged with the lego and the stormtroopers go for a ride on the train, usually to get them to their next adventure destination.

I'm a big fan of learning through play. That's how children are supposed to make sense of the world, they play out situations and scenarios whilst watching them in real life. It's very true for Tom too. One day his stormtroopers were going to the beach to surf, but they needed to take a train, and for that, they needed a ticket, so they stopped at the grocery store, bought popcorn and juice and their tickets on the way. That's just an example, but, it gives you the idea. The life skills are creeping into his play and it's fantastic.
He comes up with scenarios that encompass knights, ghosts, cops and 'criminals' all at once and it keeps him entertained for hours.
We're fortunate the his ABA tutors, even though we've had quite a few of them, and more change than I would like, are big fans of teaching him through play. One of his current tutors is taking her masters with a specialty in play therapy, which is great. Another of his tutors would run most of his programs through play, including having trains ask him questions. So, much of what Tom has done has been ABA, but within a Floortime framework and it's worked well. It wasn't particularly intentional, but Tom is a stubborn kid who won't work if he realizes that's what he's doing.

So, to sum up, lots of great progress and one clear aspect of the DSM criteria that I can draw a big line through as it no longer applies. The rest of it will come, but, being a checklist kind of girl, it's very motivating to cross off one thing.

New Year - New DAN Doc Update

2012-01-29T08:44:00.000-08:00

Tomster had a follow up appt with his doc on Thursday and we got to chat over his latest labs and next steps.

Firstly, the OAT test. The doc agrees with me that there has been marked improvement in all areas, although some of the vitamin levels have gone down, probably because of depletion because of more complete functioning, likely, as I think, because of the MTHFR issue being corrected.
He was also interested in the new fungal markers, especially with them being so different from our usual culprits.

The new stool test showed that his usual yeasties have gone (yay!), but have in part been replaced by some other weird fungal species (and probably Aspergillus which is hard to culture) - another Candida species (parapsilosis) and Rhodotorula glutinis/mucilaginosa. Never heard of those two. On the whole, the bacteria distribution looks better, he now has a good amount of Lactobacillus (which was previously absent), a bunch of others in better amounts and the Klebsiella is gone. Yay for the MCT oil! He does have a couple of new odd ones in the imbalanced zone - Gamma hemolytic strep (yuck) and Staphylococcus aureus (also yuck).
No parasites or ova. Some RBC, which is new. Also new was the presence of lysozyme, which can be indicate of inflammatory bowel issues. Also outside reference (but only slightly) was % acetate and % valerate, which again, could be indicative of inflammation in the gut.
Tom's doc thinks that the inflammation could be due to the other fungal species detected, so we've decided to put him back on nystatin for a month or so to clear them out. Of course, since Tom's also had 2 courses of antibiotics since this stool test, we need to do some more work on his gut bacteria again. After the nystatin, we'll do a month of GI revive to help improve gut condition, as well as continuing with probiotics, adding Sac B and continuing the water kefir, which I think has played a very large part in improving the bacterial distribution.

Onto the IgG test results. Tom's doc is pleased that the sensitivities appear to have gone down, which is a sign of improved immune function. Yay! Agrees with my stand to avoid the moderates, rotate the lows and try some of the foods that have fallen off the report.

Finally, the Amino Acid testing. Tom has very low methionine, which completely corresponds to his MTHFR situation, also his cysteine is low, which corresponds to low glutathione. Also, interestingly, only one of his essential AA were on the 50th percentile, everything else was low and most were below the 16th percentile, which surely can't be ideal for a growing kid.
Has recommended we add an amino acid supplement to the regime to try and build up these levels, which I completely agree with. Tom needs larger supplies of these for detox purposes and growth.

We also checked his growth since last time. Tom's currently 39 pounds (down a little - at around the 50 percentile), which is more than I thought. He's also grown 3/4 of an inch, and is now 43.25 inches (65 percentile), so, he's tallish and lean. Perhaps explains the few nights of 'my wegs hurt' in the middle of the night.

So - summary of interventions -

- Intro new foods slowly
- Add amino acid supplement
- Add Sac B and try and limit fruit to a couple of servings a day (which is right around where he is)
- Nystatin then GI revive
- Increase CoQ10 to 75mg per day (to replenish stocks)
- Substitute cerefolin for MB12, 5-MTHF and NAC (since this contains all 3 supps and we can get it covered by prescription)
- Add P-5-P (active form of B6) to try and increase levels - OAT test showed they were low
- Add 5HTP to try and improve mood level (Tom's been a little whiny and fearful)
- Add magnesium
- Add some kind of topical glutathione supp, since all testing showed his level is low
- Restart DMSA when all others complete and everything is settled down again.

Very happy that we have some new steps, but also that we can get several of his current supps covered by prescription, since it gets expensive to treat autism-associate issues with biomed. It's completely worth it, but expensive.

He also wants to run some labs, which, hopefully we can get done in just one visit. I'm hoping anyway.
Labs to check - Redo CBC (since Tom still hasn't had a normal one), ferritin (to see if has improved), iron (tied to ferritin) and COMT (commonly seen metabolic genetic issues in autism).

He was very impressed with Tom's increase in speech and general social skills and functioning. We're getting there.

That's it! You're up to date. Plenty to keep us busy....

A New Kind of Post - Kitchen Chemistry

2012-01-28T16:17:00.000-08:00

I'm not a great cook. I can follow a recipe, but I'm not naturally a cook and I am very self-conscious about cooking for others. But, I saw an episode of Diners, Drive Ins and Dives (or whatever order they're in) last night that had a restaurant owner making his own ricotta for their pizzas. It looked so easy, the chemist in me thought I would try it at home.

The recipe calls for 4 parts regular milk to 1 part buttermilk. I didn't have whole milk, so I added a splash of heavy cream to up the fat. Yum. I used regular cup measurements, 4 cups milk to 1 cup buttermilk.
Anyway, you have to mix the milks in a pan and heat on medium heat, stirring to make sure you don't burn the milk (or the bottom of the pan) until the curds start to separate from the whey. I even took a pic of this, hopefully it shows up well enough.

Curds starting to appear...

I turned the heat down slightly after this and continued warming and stirring occasionally. Whilst you're waiting for this, line a sieve with a few layers of cheesecloth (maybe 4-5) and put a bowl underneath. Then, ladle your curds (the floating solid bits) into the cloth so they can drain.

Curds in sieve

Let the whey drain for a while (5 mins) or so, then gather the corners of the cloth and hold up. This helps the curds drain further. Keeping the bundle together, put back in the sieve and leave for about 15 mins. The curds then really start to come together.

Strained curds

Put it in a little container in the fridge until you're ready to use. It tastes delicious and who knew it was that easy to make yourself? Going to try it out on pizza tonight I think, assuming the breadmaker does it's magic on the dough. That's a first time experiment too. If it looks decent, I might even share a pic of that....

Update - Here it is! Tasted pretty good too, not bad for a first attempt. Ham, mushrooms and ricotta, with sauce and mozzarella.

Finished pizza (pay no attention to shape!)

Yet More Boring School Stuff...

2012-01-25T15:19:00.000-08:00

I've done it. I've officially declined Tom's kinder offer from TCA. I'm sure they're a great school, but, in my gut, I know they're probably not the best setting for Tom. That's not to say he couldn't have coped there, I think he could have, but, I think it would be less stressful on all of us, including him, to send him to another school where they do have more autism expertise to hand.
Today brought another school tour - Chinook Trail this time, and like Mountain View, I loved it. The building is great, staff very welcoming and the school had a great feel to it.
I was luckily able to tour as well as meet with the Principal and Vice-Principal and found them open, honest and helpful.
We're so fortunate that we have so many great schools to choose from, but, sometimes that choice option can be overwhelming. There's a lot to take in.
So, today, I submitted our 'yellow form' which basically says that we would like to enter into the 'choice' system for our district, so, we will enter another form containing our first and second school choices. I'm hopeful that we will get one of our choices, Mountain View or Chinook Trail, especially since we are only wanting half day kindergarten. I think half day, plus an extra year of ABA will really set Tom on a great path for future success.
Just need to decide on which school to put down first now, but, I'm confident that either school would be equally good.
Now I need a drink. Cheers!

Two Posts in One Day...

2012-01-23T19:07:00.000-08:00

Well, look at me being a super blogger! I went to the choice information night tonight for Mountain View Elementary. I loved it. Seriously loved it.
The school is probably 6 or so years old. It's a great building with the year groups organized in pods, so the kinder pod consists of 3 classes, all of which were very bright, tech-infused and friendly feeling. They have multiple computers in each classroom, electronic whiteboards etc etc. They're a technology magnet school, and, I think I've completely turned around my thinking on how we should start Tom's school 'career' off.
I was previously thinking that all that stuff would be a distraction and he should focus on the basics first. But, I guess tonight I woke up.We're in the 21st century, not the 19th. Tom loves technology. He loves the computer, loves an ipad or an iphone. It's a tool to engage him, and he's pretty competent on said gadgets.
I'm thinking back to an article I read about fostering interests in kids on the autism spectrum, and perhaps this is a way of doing it.
A new friend this weekend gave me some advice - she thought about where her daughter would WANT to go to school. I know given the choice, Tom would rather Mountain View. He'd rather have a more friendly environment. He'd rather be surrounded by technology. He'd be more interested and because of this, he would learn more and want to go to school.
I spoke with the principal of the school tonight and briefly talked about what I was thinking for Tom. Mountain View has a Communication Social Delay program (CSD), which Tom is too high functioning for, but, it was the principal that pointed out that even though Tom wouldn't be in that program, the teacher is a resource for the whole school and therefore if there were any issues, or his teacher has questions, there was that expertise to hand, as well as the district autism team. It was him that volunteered that information, even though I was thinking it. I also kind of like their schedule - 2 full days and 1 half day per week.
So, class size consideration is going out of the window. As is probably TCA.
Tomorrow brings my tour of Academy International, but, Mountain View is a serious consideration at this point. And I don't feel confused or conflicted.

Second Thoughts...

2012-01-23T11:51:00.000-08:00

So, I'm having second thoughts about Tom's school. We accepted his place at TCA, but, I'm beginning to wonder if it's the right school for him. I'm concerned at their lack of autism personnel, not that he needs constant support, but, if there is one thing we've learned over the past few weeks, it's that having that resource available is very helpful. Tom's issue with one of his classmates has shown that if we have autism specialist support available as needed, things are dealt with quickly. When there is a dollar amount associated with the availability of support, undoubtedly, he would not get the support as quickly or regularly.
I'm also concerned that if something happened at TCA as has been happening at preschool (not Tom's fault, the other typical kid is causing most of the issues), I have a horrible feeling that, being the one with the label, Tom would be the scapegoat.
After a weekend away skiing and lots of great advice from some new friends, I'm going to re-visit the decision.
Tomorrow I have a tour set up at the local IB elementary school that we can simply 'accept' the place at, if we wish, since it's the follow on school from his preschool, and tonight is the kinder info night for another local elementary school, so, I'm going to that one too.
Our main reason for preferring the charter school was the smaller class sizes, but, even smaller class sizes are less preferable to a school where if Tom does have any issues, support is available. At TCA, they said that we would have limited autism support for the kinder year, but it would 'go away' for the subsequent years, which, aside from not being completely in the spirit of IDEA, it's a little too presumptive. True, he might not need any support, but, he might also need a little autism support.
So, I think it's probably wise to look at other options over the next week to either confirm the TCA decision, or to choose another school....

IgG Update

2012-01-16T19:03:00.000-08:00

IgG antibodies are somewhat controversial in food allergy testing. Traditional views are that only the IgE antibodies are significant, but more is being learned of the different role of the antibody types in allergy and more importantly, the inflammation reaction that accompanies them. You only have to consider celiac disease, which can be extremely serious, to realize that IgA antibodies, as opposed to IgE are very significant (and indeed more so than any others), thus expanding the consideration for antibody type consideration in immune function.
Anyway, we decided to re-check Tom's IgG antibody test, since his last one was done in August 2009.
We use the Great Plains Lab test, which Tricare covers, we can do at home with a finger prick and covers 94 elements in all.
The test rates foods on a colour scale, with green representing 'clinically insignificant', yellow 'low', orange 'moderate' and red 'high'.
Last time we ran the test Tom had 3 moderate foods (garbanzo bean (chick pea), pea and peanut) and 12 low foods (egg white, grape, orange, whey, lentil, pineapple, coconut, egg yolk, grapefruit, almond, cheese and lemon).
I think it's a testament to Tom's improved health and gut function that our latest test showed a distinct improvement. This time we had only 1 moderate item (pineapple) and 5 low (cane sugar, grapefruit, lemon, kidney bean and pinto bean).
So, we've gone from 15 foods to 6.

Some foods increased in reactivity -
Kidney bean from 1.39 to 2.42
Pinto bean from 1.19 to 2.14
Grapefruit from 2.21 to 2.98
Lemon from 2.02 to 2.74
Pineapple from 2.38 to 4.14
Cane sugar from 1.25 to 3.24.

But, it certainly is nice to see the egg ones drop off the radar, at least for this antibody type, and the pea and peanut ones. I always worried about the peanut one, just in case, but it looks like that's calmed down.
On the whole it looks like Tom's immune system is calming down, which can only mean that any accompanying inflammation is also easing up. Always good news.

So, that's it for the IgGs. You're up to date!

One Busy Week Down, One Ahead...

2012-01-13T18:59:00.000-08:00

Tomster posing for passport pic

It's been another busy one here this week. We were back to school for a full week, plus a full week of ABA, ST, OT, skating for both Tom and I, as well as a bunch of other stuff that came up.

The pic above is (when it's cropped) Tom's new passport pic, necessitated by me realising that since we're going to the UK in March, I needed to check our passports. Bugger. Out of the 5 passports in this house, 3 of them need replacing, including the two most expensive ones, the UK ones. Luckily they are still valid, but need replacing before we go nevertheless. The worst one to do is the US one. The US makes both parents show up in person to apply for a passport for a minor, even if you're just renewing it, so we had to schedule this around ABA, speech and OT today, before 4pm and when Jeff was able to come. We walked into the post office at around 3.45 and timed it perfectly. We waited maybe 10 mins, but behind us were probably 5 people waiting for them too and they take ages...
Anyway, in addition to this 2 parent rule (unless you have gone through the documentation to do it without other one) the photo requirements for the US are more strict too and often the only way to do it is to go somewhere that will do them for you, for usually around $10. Photo booths such as those in the UK are non-existent. It's a pain. I hate doing passport pics.
The new camera came in useful again as I posed Tom in front of a towel-wrapped chair. I did discover the key to getting him to do what I want though (stop looking up, open your eyes etc etc) - I would show him the pic that was wrong and tell him what I wanted. Just that visual seemed to help. If we'd been doing this at Walgreens, it would've cost me $50 with the number of pics we took.
The other problem is meeting the frame requirements, 2 x 2 inches with the whole chin must be whatever distance from from top thing. Who takes a portrait pic in a square shape?! The US is weird. I did however find a template in a free piece of software on CNET called Cam to Print. Other best thing? It has templates for UK passports too. So, pics are done and the US peeps accepted it. $105 spent. Bleurgh.

Also done are the UK pics for Tom, I just need to get the things signed now (we can do them by mail to the embassy in DC, but we need someone to countersign) and sent in. Oh and take my new pic. That'll be fun. Also not fun is the fact that my UK passport will cost over $250 and even Tom's is around $160, by the time you add in fees for everything.

Looking forward to a 3 day weekend here, thank you very much MLK. Then, the routine changes next week since one of our ABA tutors has an internship going on, so, we'll be going to 5 days a week of ABA instead of 6, but with slightly longer sessions on the other days. Also next week we have Tom's RDI evaluation. Very excited about this, despite us having to drive for Denver for it, and the fact that it will be yet another thing on Tom's and our plates. Ah well, no rest for the wicked.
Ooh - in other news, the BACB confirmed that my PhD is acceptable for BCBA. Woohoo!

Strep Round 2...

2012-01-06T19:37:00.000-08:00

Today Tom's behaviour has been off. He's not been compliant and had a rotten time at ABA, ST and OT, as well as generally being a complete toad. So, that alone should have told me something was going on.
At OT I noticed a small rash appearing on his face and neck. I figured we were already there, so we would stay for his session, but our local urgent care is right downstairs and with it being already 2.30, there was zero chance of getting an appt with Tom's doc. So, after ST, we wandered downstairs, put his name down on the walk in list and then were offered to go home and wait, then come back in 90 mins and Tom would be the next one called. Perfect. By this time the rash had also spread over his chest and back.
Roll on 90 mins and we headed back to the urgent care. We were seen pretty quickly and lo and behold, the PA we saw has a 16 yr old with autism. It really is everywhere. She was really nice, listened to Tom's recent fever and strep history and completely agreed that rheumatic fever was a risk. Instead of redoing the amoxicillin, she recommended we try another type of antibiotic, but a quicker, more potent one to make sure. So, we have a Z pack, otherwise known as zithromax, for 3 days. Hopefully will do the trick and Tomster will be back to normal tomorrow!
Of course it means that we will have to pump Tom with antifungals and probiotics when this is over, but, right now the important thing is to make sure the strep is gone.
Oh, and a shout out to our Target pharmacy. I arrived at 7.02, and typically they close at 7. I knocked the door of the boarded and shuttered pharmacy and the lovely pharmacist there got Tom's script done for us. What was funny is that he thanked me for being nice. I explained that I was the one who was late and he was the nice one. I guess he has people banging on the door regularly demanding after hours service. Poor chap. But, tonight, he did us a big favour and for that we are grateful. Walgreens - even if you do come back to Express Scripts, we'll stick with Target.

Yap Yap....

2012-01-05T20:03:00.000-08:00

No, not in the dog sense either. Or in relation to my ranting below, but, this has certainly been helped along by his therapy provision.
I asked Tom, as I do every day when I pick him up, how school was and who he played with. I can't say I liked the response, but it was the most in depth response to date.
His answer - "I didn't play with any of the other childrens. They were mean to me. C screamed at me and kicked at me. Look at my leg! And A ran away from the teachers and they had to chase him."
Afterwards it emerged he played with another girl outside, so it wasn't all bad. He also wasn't put off school and said he still had a good time. So thrilled he put that response together.
Just awesome.
Certainly made me feel better after a very wound up afternoon.

Sick of Apathy

2012-01-05T12:37:00.000-08:00

I'm sick of people. Sick of their complete and utter lack of willingness to put themselves out to do anything to even help themselves.

A while ago, I blogged about a PopVox posting I was putting up on FB. It's regarding a bill, HR2288 that seeks to put ABA under Tricare basic, changing the designation from a 'special education' benefit and classifying it instead as a medically necessary therapy.

When we moved to Colorado Springs in 2010, we were required to obtain a prescription from a doctor to restart our therapy after moving Tricare regions. Tricare appears to have quietly done away with this requirement and we can all guess why. If you require a doctor's prescription for something, it must be considered a medical treatment. The AAP recommends ABA as the first line therapy for children on the autism spectrum, to the tune of 25 hours per week. The AAP represents doctors. So, it doesn't seem much of a stretch to reclassify the therapy to be the same as OT and ST, as medical. Currently ABA is provided through a program called ECHO, which is only available to active duty troop dependents. Once a servicemember retires, they are no longer active duty and the ABA therapy provision goes away.
If ABA is considered medical, then it will instead be covered under regular old Tricare, which is what everyone gets when the servicemember retires, thus making it available to retiree dependents.

The bill that the PopVox posting referred to is stuck in committee in the house and who knows if it will ever make it out. It currently has 34 co-sponsors.
So, one of the main pushers of this initiative, started a White House petition to try and get the issue addressed.The petition needs 25,000 signatures to have the issue taken up, by Feb 1. It's a massive goal.

For those that don't know, I help administer the American Military Families Autism Support FB page. The issue has been posted there a lot, as has the petition. There are 1700 members of that page alone. Want to know how many signatures that petition has? 229 as of right now. Pathetic.
Current figures estimate that 1 in 88 military children are on the autism spectrum and some speculate that the number might be even higher.
Where are these people? Do they even realise that their child's ABA provision will vanish when they retire?
The annoying thing is that I am reasonably confident that when Jeff retires in 4.5 years, Tom will no longer need ABA. I hope anyway. So, if this doesn't pass, it probably won't even affect us that much.

But, I hear of people all the time talking about how their servicemember can't retire yet because of this therapy provision. They complain about it. But they don't do anything.
It seems that within the military community there are a few people that will actually push for change. The rest want everything handed to them on a plate. People in the past have fought tooth and nail to get even this current provision for our children and I for one am very grateful for their efforts. This is why I help in these issues. People get burned out very quickly in these efforts so others need to pick up their torches and continue.

And, if you think this is just a military issue think again. The military retire (or a lot of them do) when they are young forties, not 60s like the rest of the population. Yes, of course, they go on to hold other jobs after, but, these military retirees have children that are not college age or older. Some of them have very young children and children in elementary and middle school. These children are the ones that benefit most from ABA.
When in the military, the kids have their ABA provision, when not, they won't.
I don't push for ABA in Tom's school district because of our private provision. I haven't signed up Tom for the state medicaid waiver because we will probably have moved before he gets to the top of the 4-5 year waitlist. I am hoping that he won't need those services anyway, because we have had a lot of ABA through the military. Tom is doing very well, but not all children will not need their ABA provision. Not all children will be as old as Tom when their father (or mother) retires from the military.

Let me tell you what I would do if Tom still needed ABA and Jeff had retired?
I would lobby the school district to provide it. I would register him on the medicaid waiver list. I would take resources from others, both school and state funding to provide for my child. What happens then? The pool of money shrinks for everyone. And why? Because the military has some hookie definition of a medically recommended therapy as a special education one to get out of providing it.

So, this is everyone's problem. To all those complaining that special education eats up all their school funding and their typical kids don't get what they should, well, this is what you will get in droves when these families leave the military and need school funding for their children's therapy. And, before people start complaining that they shouldn't have to pay, again, take it up with your federal government because they are the ones that said the children have to get a free and appropriate education. Of course it's not all doom and gloom. Research overwhelmingly shows that early intervention can have massive benefits. Tom wouldn't be where he is without it.

So, I'm urging all military families who are worried about this to actually get off their arses and sign the damn petition. Stop expecting others to fight your battles for you and join in. You would think you were being asked for a kidney. You're not. It will take just a few minutes of your time.
As for civilian families, support your military friends and family and also sign the petition. It could have a direct effect on your own child's education, from even the most selfish standpoint. Aside from that, it's just a nice thing to do.

School Choice - Done.

2012-01-03T12:15:00.000-08:00

Well, I've checked one thing off my list. Tom's school choice for now is done.
Hopefully we will make the cut for a firm offer (chances are very good), but we've accepted our conditional offer for The Classical Academy. We had a meeting with the SpEd director for the school yesterday and I was thrilled that Tom's IEP team came along too. TCA said they didn't hear anything that they didn't feel like they could accommodate, so we're going to go for it. We're going to give Tom the opportunity to succeed, rather than to focus on the 'what ifs'. With our private therapy provision, as well as school ST and OT if needed, we feel confident that we can guide Tom through the first few years of school.
Sure, there is still a chance that it might not be the right placement, but, there is that risk with any school, and, should it prove that way, there is nothing that prevents us moving him to another school further down the road.
But, for now, we're done. Assuming we get that firm offer, Tom will start kinder at TCA in Aug.

Update 1/5/2012 - Tom's offer is now firm! Woohoo!

New Year - Here We Come!

2012-01-01T19:51:00.000-08:00

I've had a bit of an unfortunate start to 2012, I seemed to pick up a tummy bug that really kicked in last night, but seems to have lingered. The usual upside of such a bug seems to be a complete lack of appetite, but, no such luck in this case, so there goes my hopes of losing some of my winter poundage. Bugger.

Anyway, onto the point. I don't normally make resolutions per se. They're mostly pointless and I never seem to be able to stick to them. But, I think I've finally got to my tipping point. I'm a procrastinator and probably one of the world's worst. But, when I finally hit my breaking point, such as an impending deadline or just that I can't take it anymore, I'm usually quite quick to turn things around. I'm pretty certain that I'm now there.

My procrastination is not good.
I actually waited in a 10 car lineup yesterday to drop one bag of clothes at the goodwill dropoff. It's good to know that I'm not the only person that leaves it to the last minute, but, if only I had been more organized? I also waited to the last day to redeem my living social coupon for office max. If I had been more organized I might have timed it with a special offer. No, I'm not an extreme couponer kind of girl, but less money on ink cartridges means more shoes and other little niceys.

I have been plodding along on a microbiology class for almost a year now. Plodding, plodding. I have bursts of doing 3 labs at a time, then nothing for weeks. Truly hopeless. Part of the reason I've lost my motivation with this class is not lack of interest. On the contrary, I'm very interested in it, but my purpose for doing it has changed somewhat, so I've slowed down.
I was planning on using the class towards pre-requisites for a dietetics master's degree. I've decided to put things on hold on that front. I have a problem with the ADA (American Dietetics Association), who really rule the roost out here in the US. They have Coca Cola, Pepsi, MARS, MacNeill (them of all the tylenol recalls) as corporate sponsors, to name but a few. Basically, they take most of their money from junk food and big Ag. That seems at odds with their mission, to promote better health through good nutrition. Also, to become an RD, you need the appropriate qualification and also need an internship, which are hard to come by, especially in an area you want to practice in. Then, add in the final nail, insurance mostly doesn't reimburse for dietetic consults. You could have a kid with multiple food allergies and need help in determining a diet plan that will provide them with adequate nutrition, you would think the perfect use of a dietitian, but insurance won't pay for it. Ultimately, in this day and age, people either can't afford, or won't pay out of pocket for this kind of thing, thus it seems that RDs end up taking work they don't want to, to pay the bills. That seems to completely defeat the purpose of a career change. I might as well just go back to my horticulture degree plan, but, that seems like a luxury right now.Although, one day I will do this.

I really want to find a part time career that I'm interested in and that I can make some kind of difference in.
The process is proving frustrating. I thought briefly about retraining to be a nurse practicioner, but ultimately, that would mean a year of pre-reqs, a 14 month accelerated BN program(full time, starting right when Tom finishes school for the summer), including clinical placements, plus then a 2 year master's to get there. Beyond the time we have here in the Springs, and beyond what I think would be my limit for studying. Also, the person at the program wasn't sure I had chemistry classes equivalent to their 'general chemistry 101' classes. Um. Not to toot my own horn, but I have every damn chemistry class out there, including a recent organic chem class I took. Plus a PhD in materials chemistry. I think I have it covered. Anyway, it didn't inspire confidence.

Also then we add in the prospect of another year of half day schooling, since the school that is at the top of our list for Tom doesn't do full day kinder, so I'd be on my current schedule for another year, and doing anything full time is simply not feasible nor economically viable.

Why is it so hard to find something that would work both part-time and be portable?

So, this being a new year, will be the year I finally start on something. Not pre-reqs for something. I came to a conclusion. I've studied a lot. I've taken additional classes after my PhD just out of interest's sake. I'm reasonably well-rounded these days. I have classes in business, horticulture, anatomy, psychology, nutrition, among others. I'm not going to completely retrain. If my current degrees and classes aren't sufficient for entry to the certification, aside from one or 2 classes, then it's not going to work for me. I also don't want to spend the next 5 years studying. I spent just in the UK almost 7 years at college. It should be enough.
One thing that has come to me recently is the option of doing my BCBA (Board Certified Behaviour Analyst) certification. They actually want(!) science backgrounds for entry, so, my degrees would already meet their criteria. I would need to take 5 classes in total, plus the exam, plus their required experience to be qualified. That seems very reasonable. So, the plan is to try and find myself some tutor hours to try and gain a little experience outside of the live-in type with Tom, to see if it would be a match.

So, that's the career plan. Or at least the resolution to just get on with it.
Other resolutions this year -

- Get back to the gym. I've been the laziest, slackest person I know about it. I just need to get back to it, since I have a feeling my metabolism is finally slowing down. I'm going to make time for it.

- Make the decision on Tom's school and be at peace with it. I stress way too much anyway about this and I just need to pull the plug and do it. So, that's on the list too.

- Try and get my paperwork in the house organized. We get probably 6 or so EOBs a week for Tom, or at least it feels like that. I am drowing in paperwork and I need to get it sorted out. Add to this our taxes. We should be able to deduct medical expenses this year, so I really need to get that sorted out too.

- Be more mindful of my time. I volunteer a lot. I need to really decide how much of my time I can give away. Don't get me wrong. I enjoy my volunteer work. I enjoy having the opportunity to make a difference. But, sometimes things become much more time-intensive than they should, or, than I can allow them to be. So, I'm going to be more choosy and more careful with my time. I need to prioritize better. My son, my hubby, my sanity should always come before anything else.

- Be more prepared in general. I'm fed up of having nothing ready to eat in the freezer for those days when I am out late with Tom and don't feel like cooking. I'm already getting a jump on that one by having made 7 quiches to freeze, and we have leftover pie from tonight for tomorrow. Perfect.

- Get more sleep. I go to bed too late. I'm not a morning person either really, so being woken up at 7am is not my idea of a good time, especially after less than 8 hours sleep. So, from now on I'm going to limit the time sucks (already deleted Farmville!) and get to bed before 10.30. If I said 10, it just wouldn't work, but 10.30 is reasonable.

- Drink more. Yes, that's right. More, not less. I actually like booze. I like a fruity wheat beer. I like wine. I like mojitos. I'm going to drink more of them. Ultimately, I'm more relaxed when I have the occasional drink and that's ok. I'm not saying I will become a daily drinker even, but, when it comes to a questionnaire that asks how many units a month I drink and my answer is 1 or 2, clearly, I'm not drinking enough. Feel free to bombard me with studies showing the benefits of a the occasional tipple. I definitely need to relax more and this seems like the perfect way.

I'm sure there are a ton more things that I should be concentrating on but aren't, but these are a good start.
Here's to a more directed 2012.

A Walk In The Woods

2011-12-30T21:27:00.000-08:00

So, during our trip to MT this time we actually got out for a winter walk in the woods. Just off Hyalite Reservoir there are a bunch of cross country ski trails, as well as walking and snowshoeing paths. Who knew?! Wondering why we never did this before. It was idyllic. So quiet, so peaceful. We decided it might be a good setting to get some decent pics of the Tomster.
Here are a few of the ones I took -

Jeff and Tom on the bridge - Tom wasn't happy - he wanted to go and run in the snow...

Should've used the flash...

Cute boy, wonky hat

Ahh, my handsome little guy..

After seeing all those cross-country skiers out there, I think that could be a hobby I would do. I've never been a runner, but, the thought of skiing, for free, through wooded trails... ahh.

Christmas with the Stockwells

2011-12-29T21:55:00.000-08:00

We've just got back from our Christmas break with some friends to Montana and had a wonderful time.
The time always flies up there. This year we packed a lot in. We did skating with Santa, 4 days of skiing, including Tom's first venture to Big Sky and also some general wandering around time, including a walk in the snowy woods at Hyalite Reservoir.
Here are a few pics of our trip -

Skating Stockwells - Jeff with his new hockey skates

Tom after finally getting dressed on Christmas day

Tom and Kim from Eagle Mount

More pics to follow, as well as a video if I can get it small enough to upload!

Mummy Intuition...

2011-12-19T15:10:00.000-08:00

I'm not someone that runs their kid to the doctor for fevers or colds, I try to treat at home mostly, then take kiddo to the doctor if something really seems off.
Today was one of those days where Tom seemed sick enough that I would be taking him. Luckily we managed to get a same day acute appt with his doc and sure enough, we were right.
Tom had woken up with a fever of 101.5, but no runny nose or coughing, but complained of joint pain and that his 'chin' was hurting. He was pointing to his throat, but didn't know the right word, so used the closest one he knew.
You know you're really on the road to autism recovery when your child can describe their symptoms to the doctor themselves, as he did today.
Anyway, after a rapid strep test popped positive after just a minute, despite no streaks or anything on his tonsils and only a mildly inflamed throat, Tomster's now on antibiotics. So glad I followed my intuition. Hopefully catching it this early will mean fewer days of antibiotics and a much quicker recovery.

Grr

2011-12-15T15:34:00.000-08:00

There is nothing that pisses me off more than parents of typical children who are shit. Shit at managing their child's behaviour. Shit at teaching their child manners. Shit at personal hygiene. I could go on.
Basically, we have an issue at Tom's school with another kid who has a less than ideal situation at home (chain-smoking, hacking, no dad in picture, etc etc). I don't blame the kid. It's not their fault.
I do take issue with a grandma that accosts me at preschool and tells me that if she had her way, she'd just tell A to hit him back. Him being Tom. I pointed out to her that it was my understanding that it wasn't Tom starting it most of the time, at which she begrudging accepted appeared to be the case from what the staff had told her.
Don't get me wrong, all 4 yr olds squabble, push, chase, grab hold of coats, in fact that's what I witnessed between 4 boys in the playground, including Tom, as I picked him up today. A certain amount of boy behaviour, I think, is normal. But, when I have the grandma tell me 'he tries to wrestle with me', um, hello? YOU'RE THE ADULT.
Tell the kid no. Don't allow that kind of play and don't allow them to watch that kind of thing either, as I told her. I'm sorry, but, whilst I know that it's not the kid's fault and Tom's not an angel, I don't like that we're paying (or at least our insurance is) $36,000 per year for behavioural therapy and I will be damned if I allow it to be derailed by a kid who has useless parents. We had a hitting issue last year when Tom was 3 and couldn't communicate well enough to meet his needs quickly enough for him. That was resolved within a couple of weeks and he's been massively better since, for the most part. I can't believe we're having it again this year.
I guess we'll give it a few weeks after Christmas (with hopefully some modelling and help from the autism specialist at preschool) and go from there...
Yes, I'm judging. Yes, I'm being mean. I don't care.

In other happenings today, I went to visit TCA and liked the school. The kinder class I saw was so orderly and quiet, it was awesome. I hope Tom will be able to cope there. I also talked with the sped director and she said that she didn't hear anything about Tom that was raising red flags for her or their ability to accommodate him. Also, I liked the fact that she said the only real way to see if a school is a good fit, is to see how the kid gets on and does after the first few months. I kind of agree. We'll never know how good a setting will be for him without trying. So, we'll see, but it's promising.

Weekend Recap

2011-12-12T16:34:00.000-08:00

I already included this pic on my FB wall today, which was one of the generated pics from my attempt to get a pic of Tom and the dog for our Christmas cards. Yep, I'm running behind this year, so they will be late.
As you can see, for once, it's Tom that's co-operating, and the dog, not so much.

Anyway, to carry on from the last post, I have a couple more speech mentions.
Heard on Sat in Target in Lego aisle - Lady: How old are you? Tom: I'm 4. How old are you?
Then today I asked him (as I do everyday after school) what he did at school today. His reply "I played with A. No, wait, I didn't. He's mean. I played outside with C and we played fighting. Pow, pow pow (with actions)". It's the longest and most in-depth response I've ever had to that question. Very cool.

Then, we had the C3 auction yesterday that I helped a little with. It was great and Pam did a fantastic job on it, and I picked up some great auction tips. Everything sold, which was good and hopefully a good amount of money has been raised for the program.

I also had a girls' (as it turned out) dinner out on Sat evening, which was lovely and much needed. Thanks girls. Again, I was the only one with a beer (or 2 since I wasn't driving - thanks Laura!), but, it was great.

Looks like so far the week's off to a good start, Good ABA session this am and kiddo did great at school too. This week is probably going to hold a couple of school tours and finishing up stuff ready for when Tom's off next week. Arrghhh. Is it Christmas holidays already?!

Latest Little Nuggets

2011-12-08T14:52:00.001-08:00

After last week's issues, on Sunday, lovely Tom re-emerged. It's been a good week. Lots of progress, lots of talking. So, I'll just list a few of the little phrases from this week -

- "Oh, mum, you're here! Did you have a good time at the movies?" (Monday am after I left before he went to bed on Sun to go out)
- "Not that baby cup! I want a big boy one" (Upon being presented with a 'spout' cup because I couldn't find his other one)
- Sarah: "Why do you like the snow Tom?", Tom: " Because we can make snowmen. And we can make snowballs and hit people in the nose with them"
- "First we need to put up the tree, then we need to decorate it"
- "Dad, why do you have your pyjamas on?" (Yes USAF, even my son thinks ABUs look like jim jams)
- "I have a job. It's playing Plants v Zombies".

Yes - interesting week on the speech development front. He was also back to his usual happy self at skating yesterday. Yay!

It's Been An Odd Week, Harry....

2011-12-04T09:53:00.001-08:00

Harry Potter

We've had a rollercoaster of a week. After last Sunday's fever, Tom woke up on Monday very chatty. He did great for a few days, including a training run of ADOS by his preschool autism specialist on Tues. Then, Weds he started to get a little more 'off' and by Thurs, the culmination of being sick, travelling, not having enough sleep, his teacher being off sick and having a new ABA tutor did him in.
I got my first ever phonecall on Thurs from his school to say that he was very upset and was sobbing about being 'scared'. Thankfully, one of his paras at school was wonderful with him, cuddling him until he basically fell asleep, which is how he stayed for the next 20 minutes. We are so fortunate to have a wonderful school environment for him right now. Honestly, I wish they would just offer kinder!
He's been exhausted for the past few days. We've put him to bed before 7 every night since and then he's been getting up after 7, which is a good hour or so more than usual.
Anyone that knows Tom, knows that he is the kid of boundless energy and the past week or so has been troubling. He hasn't been his usual happy, bouncy self. He's been whiny and lethargic, with no energy.
He's had a bunch of tantrums and crying. Just not himself.
He even wasn't happy whilst on his ABA camp skating trip yesterday and ended up going to bed without a peep (and after only one bite of dinner) at 6.35pm.

Luckily today, chirpy, chatty Tom seems to have re-emerged. He's singing (including making up his own), zamboni-ing the kitchen floor and skating around it and generally being a cutie. Hoping this time sticks. Not sure whether it could be a lingering virus (he had a low grade fever again last night), whether he's just not eating enough and is tired (we're going to try and stuff him a little more to see if that helps), whether this is something to do with the Aspergillus it looks like he has, or whether he's just having an off week. Either way, we're hopeful our lovely Tom sticks around before another little dip.

In other news, Jeff and I went to his work Christmas party on Friday and Tom had his lovely babysitter from across the street, also known as Mary Poppins. Who, knowing that Tom's on a Harry Potter kick right now, brought some glasses for him to play with, hence the picture above.
Jeff also seems to have taken to ice-skating after yesterday's ABA trip, preferring hockey skates. Imagine that? ;)

And The School Hunt Begins...

2011-11-30T09:02:00.001-08:00

Last night marked the first school presentation evening for the chore of choosing an elementary school for Tom for next fall. Yes, it seems like I'm starting early, actually, many of the registration dates for the schools in our district are in January. Yes. January for an August start.
For Tom there are some considerations obviously, some of which will depend on which type of program we feel would be appropriate for him, and when I say 'we', I also include our IEP team in that. Our preschool autism specialist is very helpful from this respect. Right now there are 2 program types we're looking at - CSD (Communication Social Delay) and regular kinder with pullouts for speech or whatever as needed.
If we go the CSD route, there are only three or so schools we can choose from.
We're leaning towards regular kinder right now because Tom is learning classroom skills and social stuff in-situ just fine, so probably won't need the more intensive modelling of behaviour that is provided in CSD. Plus, our ABA provision probably accomplishes much of what CSD would provide. Plus, CSD is considered more restrictive, so we want to aim towards least restrictive where possible.

Last night's presentation was at The Classical Academy, or TCA as everyone, including themselves calls it. It's a charter school within our school district, District 20. They take funding from the district, but have almost complete control over their own governance etc, but, since they're a public school, they have to still comply with IDEA and the likes.
The school sounds great - maximum class size of 16 kids for kinder. That's something you're not going to get anywhere else. I liked the fact that they stress that they don't teach children to pass tests, they teach them to be well-rounded, thoughtful kids. That's very appealing to us. I like their descriptions of their methods. I like that they want parental involvement. I like that they don't have kids doing 'busy' homework, instead encouraging parents reading to their kids and just helping them with spelling words. So, all this is good.
I am concerned about provision for Tom though. Since they're a public school, they have to comply with IEPs, but I am still worried that they might not be experienced or trained in autism. Not that Tom is a complete menace, by any stretch of the imagination, but I am concerned that they won't know the best way to explain or handle some situations that might arise.

Then again, we want him to succeed. We want to give him every opportunity to do this, and, the stubborn side of me thinks that if the best education opportunity for him is at a charter school, that is publicly funded, then he shouldn't miss out. I always said that we would pour every therapy and assistance into him prior to kinder to ready him to function in school with minimum support. But, what happens if he does, even only occasionally, need a little extra support.

I don't want to put him in a school where they can support him, but not challenge him. I also think, maybe even in my own vanity, that he might just contribute a different point of view to any school he goes to. That was another thing I liked about TCA, that they encourage the kids to express their opinions and that, although it might be a little challenging for Tom to start with, it might actually help him more, because it's the culture of the school, than not having that approach. I do have to say though, the mention of the 'socratic' method in an elementary school made me laugh a little. I mean, these are dopey 5 year olds, not Harvard Law students.

Also, another thing I liked about TCA was that it's quite structured, more so than probably many other schools, which, might be of help to Tom. He tends to push to discover where his boundaries are, and more consistency might be just the ticket.

This is much harder than it should be, and I'm probably making it even more so, but this is something I badly don't want to screw up. I guess there is always the option of enrolling him for one year and transferring to another school the following year. TCA is a waitlist school, that pretty much, if you want your kid to attend, kinder is the only year you stand a reasonable chance of getting in. So, it's now or never. Urgh. Too much pressure.....

Skiing Fever!

2011-11-27T15:25:00.001-08:00

Sicky Tom

Literally.
We did our first ski day of the season at Breckenridge today. The resort was only about a third open because they haven't had a lot of snow yet. It was enough for us for the first day, and definitely enough for Tom.
As usual, we booked him in with BOEC for the morning.
He seemed fine this morning when we got up, but by mid-morning, when we ran into him with his instructors, he was miserable. Very snotty, lethargic and whiny, which is not like him at all.
So, at lunchtime, after a stop for something to eat, we called it a day, there was no way he was going to be able to do anymore, so we headed home.

Today was a refresher for Tom more than anything else and that was accomplished.
On the upside, Tom seems to be getting the hang of a snowplow and he also didn't fall today.
The downside - he currently has a fever of 103. Boo.

Make that 104. Time to break out the baby nurofen.

Happy Thanksgiving!

2011-11-26T10:40:00.001-08:00

Tomster enjoying Ft Myers beach.

So, this is how we spent our Thanksgiving this year. Nice huh?
Jeff's parents have recently decided they aren't all that keen on a midwest winter and have bought a house on a golf course in Ft Myers, Florida and we joined them for the weekdays down there in the sunshine.
We all had a lovely time, spent some time on the beach and generally relaxed.
Tom had fun playing, although decided the beach was 'over' when he needed the bathroom and the world's biggest toilet wasn't cutting it and he wanted a real one. Honestly. What kind of kid are we raising?

We flew back yesterday and I have to say I've never been on a flight with so many sick coughers and screaming babies. Urgh. So, if there's one thing I'm thankful for, it's that we have a good traveller in our kiddo. He's flown dozens of times and we've had probably 2 of those flights when he was little where he had a few crying episodes. Nothing like some of the kiddos yesterday though, that screamed for almost the whole flight. Since we've had more than our fair share of challenges with our own child, I'm more than happy to be very smug about this particular issue. I did have a little sympathy for the parents though, but only a little.
Now of course we're back in Colorado where the weather seems to have taken a turn for the colder, especially with the wind. Brr.
Tomorrow brings our first ski day of the season at Breckenridge. Hoping that Tom will have a good time. I know Jeff and I will.

OAT Confusion

2011-11-25T18:32:00.001-08:00

To back up a little - we decided to re-run Tom's OAT and stool tests because of some odd behaviour he had been displaying.
Tom's not much of a tantrumer. Sure, he has the occasional paddy, as do all 4 yr olds, but he's not like some kids that will throw a tantrum over anything and everything. Nor has he ever really had a lot of trouble with transitions. His recent behaviour had been revolving around these 2 items, which is unusual.
So, back to the test results.
When the OAT test result came in, honestly I thought there was some mix up. It's a very sad thing when you can almost recognize your child by the metabolites they pee out, but, that is roughly where we're at with Tom. There are certain levels we expect to be high.

There are 73 items on an Organic Acid Test. Tom's last OAT had 12 values that were out of the reference population - red Hs. His OAT previous to that had 19.

His most recent had 4. You can see why we were perplexed?
All 4 red Hs were in the fungal and yeast marker section. Normally we expect to see arabinose very high - Tom's never had a result under 154.
We also often see 3-oxoglutaric or citramalic high too.
This time we saw 5-Hydroxymethyl-2-furoic, Furan-2,5-dicarboxylic and tartaric as red Hs and also the usual suspect arabinose as a red H, but only barely, at 54.
What it seems that this means is that Tom has some kind of mould species present in his gut right now, probably aspergillus.

I was so confused at the results, for the first time ever, I had a consult with the biochemist at Great Plains to see if there was any possibility that Tom's sample could have been mixed up.
Apparently not. They start one sample and test through to the end, then start another only when one is done, to prevent exactly what I was concerned about.

So, the test result is Tom's. And it's fantastic. Not the mould of course, but the fact that the candida appears to have almost gone.
With the candida went the oxalate problem and also went the succinic problem.
It appears his detox and Kreb's markers are now within reference range.
Some of his markers have worsened, but, the most reasonable explanation for this is that things are now being utilized as they should, thus the stocks are being run down.

There are 2 main interventions that we have done. We introduced cultured water kefir, a probiotic drink that I make at home, that Jeff thinks smells like vomit, but, luckily, it tastes pretty good.
We've also, as I've mentioned before, identified MTHFR mutations and have been bypassing the enzyme deficiency with 5-MTHF. It might just be that the MTHFR issue being corrected has had a knock on effect onto the rest of his system and now things are more able to function because the road block is gone.

Like I said, we're not completely problem free - we have the mould issue to deal with, which apparently is a much easier problem to solve than candida - once treated it stays gone.
We also now need to get Tom's levels closer to optimum range than reference, but, for now, it's great progress.

Skating Tomster!

2011-11-16T21:13:00.001-08:00

So, here's Tom's latest skating progress. He managed to make it the full length of the ice rink tonight without falling. He falls quite a lot, but, his teacher Pam puts a little sheepskin glove as a pad in his bum. Also, being little, he bounces right back up.

In other news, I got his updated sensory profile back last week and haven't had time to really go over it and the OAT that was supposed to arrive via email this afternoon didn't, hopefully tomorrow.
Also, looks like we have an overweight dog, so I guess that means that muggins needs to start taking him for walks. Add another thing to my list.

All I Can Handle

2011-11-07T21:29:00.000-08:00

So, today I picked up a copy of a book I've had on the bookshelf for a few months, but wasn't sure when I would be ready to read. It's Kim Stagliano's "Kimoir" "All I Can Handle: I'm No Mother Teresa".
For those of you that haven't heard the name before, Kim is a contributor on Huffington Post and also is the editor of Age of Autism. She lives in CT with her husband and 3 daughters, all of whom have autism. I've been fortunate enough to briefly meet Kim at AutismOne.

I started this book after Tom went to school around 12.40 and finished it around dinner time. Yes, I'm a pretty quick read anyway, but this was a quick read. It's a great book. It reads nicely and never gets too heavy, despite the subject matter. Don't get me wrong, it covers a lot of the issues that autism families face, including doctors and schools that don't know how to help a family or child and don't recognize the other 'unofficial' warning signs that many autism parents also count as a sometimes very early feature of the disorder (allergies, head shape issues, reflux, GI problems etc), wandering, the challenges of life with a child who doesn't communicate as they should, and sadly for so many families including Kim's, seizures. I am very very thankful that to date, we haven't seen seizures in Tom. I hope we never do, but you never know. I can't imagine dealing with that on top of the 'general' autism issues.
I like the fact that the book conveys Kim's feelings on autism, genetics, vaccines, the lack of services/support and also the increasing prevalence, but without alienating or being argumentative. Her personality comes through very clearly though. She is in every sense a 'Warrior Mother' as coined by Jenny McCarthy, but in a more subtle way, in a way that doesn't lose you or annoy you.

I really admire Kim's ability to retain her humour about the whole situation. It's a book that will have you tearing up, but then laughing within minutes. She never wallows, always believes in herself and takes great care of her daughters, despite the many challenges that have been thrown at the family, including unemployment.
That is one thing that, as a military family, we haven't had to worry about. It comes at a price, yes, but it made me realize that we are very very fortunate. We have great health insurance that covers ABA. It covers all of our biomedical stuff, or at least the stuff I want to do. For just a few hundred dollars a year, I can see whichever doctor I want for Tom, without the need for a referral. I can even see doctors that are out of network, pay out of pocket and then claim back. When you're not stuck with doctors who take Tricare, it's a whole new world. Yes, the military life means we move a lot, but, it struck me that these days, many people move for jobs and often at short notice and when they don't have an income in the interim. We have never been in this position, thankfully.

What this book emphasized more than anything else was that life doesn't always turn out the way you plan, or even sometimes the way you hope. But, it doesn't mean that it can't be good.
I agree that life changes when you have a child diagnosed with ASD, as I've bored everyone with previously. It gets worse in some ways, but better in others. I have made some amazing friends since we started down this road. I have learned more than I ever thought I could in 2.5 years. I have more patience. I try to be more understanding, even when sometimes I just can't wrap my head around something. I appreciate and understand when Tom has a breakthrough. He's an amazing little boy who astounds us with his progress. He was 'Harry Potter' this afternoon and evening, riding around on an umbrella broomstick and had previously told me his glasses (which he showed me with an empty hand) were in his pocket - 'look'. Such lovely pretend play.

I am a wiser consumer though these days. We buy more natural products and food. I'm more suspicious of Big Pharma, Big Ag and the megacorps. It's changed how I will vote. If I hear of a candidate that is clearly pharma-backed (Hello Rick Perry), I will never vote for them. I don't like that science loses out to money and influence. Call me naive, but I just don't like it.

If you haven't read this book already, I recommend it. Even if you don't have a child of your own on the spectrum, just to get a sense of what some people are dealing with without being lectured.
Now I have to get around to reading the Age of Autism, which is another one sat on my bookshelf that I don't know when I will be ready to sit and read. Probably not until I've finished up the Hunger Games ones and my cheesy little dragon one (Inheritance) that's out this week..

Go Air Force Beat Army!

2011-11-05T18:06:00.000-07:00

Ready for some football

We took Tom to the AF Academy today for some football, which after a shaky start for AF, we're pleased they finally pulled themselves together, took a nap, had a coffee, or whatever it was at half-time and turned it around enough to retain the Commander in Chief's trophy by beating Army today in Colorado Springs.

It was Tom's first football game of the year and he did great! He was a little bored during the first half of the game, but by the second, was cheering and shouting with everyone else.
He also loved the tanks, Apache helicopter and other stuff the Army contingent had sent with their team to represent, probably helped by Ft Carson being just down the road.
By the last quarter the weather rolled in though and it got chilly and windy, sending a lot of peeps (including Tom and I) from the stands when at 3.5 minutes to go we figured AF were safe enough in the win.
Tom also loved the extra police presence today (since AF and Army Chief of Staff were at the game), even complimenting one on his "blaster".
Anyway, here are some pics -

Trying to actually get Tom's eye colour on camera - today they were green.

Tom and Jeff

Weather rolling in

Stockwells at game

Beat and Blow and Cadets at end of game

Autism An Advantage?

2011-11-03T08:08:00.000-07:00

So I saw this post today.
What it basically says is that as a society we put too much emphasis on verbally-based assessments and social ability in intellectual determination. It's already been found that children with autism score far higher on intelligence tests when they are designed for non-verbal assessment.

It got me thinking. Why do we put so much emphasis on eye contact? Why does someone have to hold eye contact for an entire conversation to be considered functional? I'll be honest, I can hold eye contact for that long, but I don't like to. I think it's odd to stare, even if it is at someone's eyes.
Also, why do we automatically assume that if someone doesn't socialize as we do, by including the 'fluff' that they must somehow be less intelligent, or have a learning difference/disability?

Why do we value social skills over intellect? Would we rather be a Kim Kardashian or a Bill Gates? Don't get me wrong, Mr Gates has some issues (yes, I know my fellow vaccine-refusers), but, who has really made more impact on the world?

We're lucky that Tom does have some social skills and often takes cues from how other children play in terms of helping him decide how he should play with them. Of course it doesn't always work, particularly with non-typical children that can't communicate well how they want to play, but apparently it isn't the same way that they are playing with him. Yeah, I think we're stuck between a rock and a hard place with that one, but, anyway. I think the social emphasis is too much. Yes, Tom needs to be functional. He needs to be able to make friends, otherwise life can be a lonely thing. But, why should he choose friends based on what we want him to do? Why can't he choose friends on his own terms? And why should the way he chooses friends or other social behaviour impact our evaluation of his intellectual capacity?

We know that Tom has advanced skills in some areas. A 4 year old that can do a 100 piece jigsaw isn't that typical. He clearly has some advanced visual skills. He remembers things. Lots of things. Usually when you would be really thankful for him forgetting them. Even before he could talk he would label 100 things, when the developmental checklists said he should be able to label 5. He taught himself his alphabet at 2. He generally picks things up quite quickly. But, because of his social and verbal milestone deficiencies many people would probably dismiss his future prospects.

We all know how I feel about autism, but I am grateful that he is able to show some of his gifts. I will help him develop them for his future. I don't buy completely into the whole neurodiversity thing though. There are many differences between people, whether typical or not. I don't buy that I have to accept that and ignore any medical issues.
But, maybe autism can be an advantage, as long as they kiddo has enough social skills to get by....

Lovely Tom

2011-11-01T10:12:00.000-07:00

Tom as Luke Skywalker. I cropped out his friends to protect their privacy.

Ahhh... after a couple of weeks of sheer bonkersness that led us to wonder if Tom had been replaced with a demonic version, lovely Tom is back. Friday was the first appearance and he earned Target for the first time in weeks after therapy. Then, the tantrum and protest levels dropped, the compliance came back and Tom is back to his sweet little self.
He did great at soccer on Sunday, which was the last session until the spring, so he went out on a high.
He also did great with Trick or Treating last night.
One thing though that perhaps people don't realize. We work our arses off with him. We coach him daily before school in the car - what do we have at school? "Nice hands", what do we use? "Good manners", etc. We do this for multiple things - explain the rules and have him repeat them back to ensure he has them.
So, nothing comes for him without work on his part or ours. He works harder than most children, just to function within a reasonable range of them. But, it pays off.
When Tom was around one, he was obsessed with doors. OBSESSED. I couldn't go anywhere with him without him running for the doors, I had to drive down the middle of the freezer aisle at the supermarket so he couldn't reach the freezer doors, we would be driven to distraction at peoples' houses because of this. Now, I am happy to report, that after 2 years of constant and 1 of intermittent reminders, the door obsession appears to have gone. When trick or treating, he rings the bell once, says (shouts!) "Trick or Treat!" and "Thank You!" and walks away. But, it was work. A lot of it. It's a wonderful thing.

We hold Tom to a high standard with his behaviour. Not that he always complies, in fact he regularly doesn't, especially when having a yeast flare as we saw over the past few weeks, but, we are winning the battle.
I don't make his autism an excuse for poor or unfavourable behaviour. He cannot grow up thinking he can get away with things that his peers can't because of autism. The world doesn't run according to an autism behaviour standard, although at the rate ASDs are increasing, this might change. But, right now, it doesn't and Tom has to learn that now. We are quite strict with him and we give him warnings and hold him to them. More than once we have left somewhere with a screaming child because of this and I don't doubt there will be many more occasions in the future.
I am grateful his school holds him to high standards, even though it probably creates work for them too. We're lucky from that standpoint.

Finally, both his OAT and Amino Acids tests were done yesterday and sent, so in a week or so we should know a little more of the current picture. It would be awesome if we see some more normalization of Kreb's cycle-type metabolites, but I also have a feeling we will see fungal activity too. Also very excited to see the AA results since this is a new test for us, I am curious to see his various levels, especially methionine. Sad that I get excited about this, but hey....

We've Created a Monster...

2011-10-30T11:15:00.000-07:00

No, nothing to do with Halloween either. It seems that Tom now thinks he's some kind of internet star and has been singing for cameras all morning.
I didn't know he knew this one, and it appears he forgets half the words, but, insisted.
Enjoy.

ABC

2011-10-30T09:23:00.000-07:00

Based on the previous post, this should illustrate some of the articulation issues that Tom has. As you can see/hear, Tom's mostly understandable, he just needs a little work on a few things...
Oh and I love his little intro thing, even if he does start off in completely the wrong key. I think the little hand things are where he's trying to copy one of his class paras who is sign fluent and they try to teach the kids to sign as they sing...

Speech Update

2011-10-29T17:00:00.000-07:00

I finally got Tom's speech re-eval report this week from his private speech therapy clinic.
Tom attends a social group (speech + OT) for 30 mins a week and also has 30 mins of speech therapy per week privately, in addition to 40 minutes per week at school, which is split between individual and group speech.
For some reason I can't seem to find his speech therapy initial eval from last year, so as a comparison this post is a complete failure. That aside, I can at least explain his latest results.
This year his eval included an articulation portion, which wasn't done last year because developing his speech in terms of meaningful communication rather than perfect pronunciation was the main goal. His expressive and receptive use of language was also assessed.
So, results of eval -

Articulation - Tom has the articulation skills of a 2 yr 9 month old. He has a lot of trouble with 'l', 'r' and has a lisp, so whilst he sounds quite cute, it brings his score down considerably. He is understandable to most people, and, in his defence, some of the sounds are just within the range for those he should have mastered by now, but, since he started talking very late (5 words at 2), it's not at all unexpected. He also has trouble with 'Gliding' and 'Vocalization'. But, most of these issues are to do with his 'l' and 'r' sounds. If he just corrects those 2, these problems will be eliminated. He is starting to correct these sounds himself and is actually responding to modelling of them, so, his SLP has confidence that they will be eliminated in the next 6-12 months. So, all good, even though it looks like he's super-delayed, he's not too bad.

Language - Tom has an age equivalency for both Auditory Comprehension (receptive) and Expressive Communication of 3 years 8-9 months. This puts him in the 8th and 10th percentile for each respectively and for total language, the 1st percentile. That's a little sobering, but, the fact that he is consistent with both is in some ways good. Also, considering to receive services in school, a child must be below the 12th percentile in each, so, on that front, it's not that bad. So, Tom is now approximately 9 months delayed for speech.

Pragmatic Skills - He has a little difficulty with this, mainly eye contact and social skills, but, is improving.

Oral Peripheral Mechanism - Everything appears normal for speech development (ie his has no physical issues that cause problems in this area, such as palate, tongue etc).

Voice - His voice is within normal limits, with no abnormal voice characteristics.

Fluency - Fluency is within normal limits, with no dysfluent patterns (I think this means he doesn't stutter or break speech).

The biggest takeaway from this for us is that Tom is learning and his speech is developing consistent with what we have been told, that he started late, and he will catch up (since most kids really slow down on speech development around 6), he will just do it a little later. But, that he hasn't fallen further behind and indeed has probably caught up (from my very poor memory) is encouraging. His SLP did say that he generally attends quite well in session and she is seeing good constant improvement. So, that's great news.

His speech goals as set in his treatment plan relate mostly to encouraging social speech and expanded language as well as improving his articulation. His most delayed speech goal is for the age range of 42-47 months, but he only has 2 goals in that range and for the 48-53 month range he only has one. So, that's encouraging too.

He'll continue with his speech therapy for the next year or so and we'll again re-assess.
But, as for this progress report, I'll take it. It's not that bad.

Also, I got confirmation of his 'perfect specimen' of ringworm from his doc the other day. Nice to know I've been treating it correctly.

DAN! Update!

2011-10-27T15:28:00.000-07:00

Today we had a short notice doc appt for Tom. Surprisingly, he did really well at the appt, which was really cool, for a change. He ate his lunch and played with his Mobigo, as well as had races and helped Rita at the front desk.
The doc agreed that he was doing very well socially, conversationally etc.
Anyway, on to the biomed stuff.
They're concerned it might not be yeast (although it is highly likely), but could instead be clostridia, since the level had crept up from the last OAT test.
So, before treating it with something prescription strength if needed, we're going to run the following, to check both the issue and the appropriate remedy - OAT and stool tests.

We're also going to re-check his IgG allergies, with the same GPL test we ran 2 years ago.
Finally, in order to check up on the folate and any other metabolic problems, we're going to run an amino acids test and once we can figure out how to order, cerebral folate deficiency also.

The best thing about all these is that, CFD test aside, all these tests can be run at home with urine, blood spot or poop samples that I can do. Perfect. Especially since we had a few meltdowns this morning prior to the doc appt just because Tom thought he was going to the lab, not his doc's.
I am tantrumed out. Kiddo had 4 this morning in just a 2 hour ABA session. The meltdowns are just ridiculous. Hoping we have answers in a few weeks...

Bonkers.

2011-10-24T20:46:00.000-07:00

That's the only word I can use to describe Tom right now. He's a hyperactive, fidgety mess and in addition to the ringworm, constantly has his hands in his pants. He's also going to the toilet 5 times a day and complaining his tummy hurts. So, I think it's reasonably safe to say he's a yeasty beastie. For probably a week or so, he's had less focus and has literally been bouncing off the ceiling. I put in a call to his doc last week and today spoke to them to set up an appt for Thurs. Hopefully his doc won't be running too late.
We've been treating with the usual, but upped grapefruit seed extract, enhansa and MCT oil. I also used the last couple of candex caps I had and also adding in extra probiotics at bedtime, hoping that the sleep time will give them extra time to take up residence.
I have to admit I'm wondering when we will finally put the yeast beast to rest. I'm sick of dealing with it. Every few months it flares and we're back to battle mode.
At least these days I can recognize it, mostly at least.
Also, as Tom gradually recovers, he doesn't lose eye contact and his speech continues to blossom.
I was accused this morning of 'not paying attention' to him. So, yes, annoying though it is to be called out for checking email this morning, it's wonderful that he both recognizes and verbalizes it. He's also taken to being quite the cheeky little imp too with healthy doses of 'you've got to be joking's aimed at both Jeff and I.

So, instead of our appt in Jan with the DAN doc, we have an appt on Thurs. I'm hoping we can get more insight on the yeast and why it continues to be such a problem, although I suspect I already know - that his immune system cannot keep it in check because there are other things going on. Hopefully we can add a little more information to the puzzle later this week.
One thing with Tom is that it's tough to get labs done these days. Tom knows what's coming and isn't happy about it, and most of the labs that are metabolism related have to be done after fasting. With ABA 6 days a week, it's very difficult to get those kinds of labs done without cancelling something. At ARI I saw there was some talk on amino acid profiles and since these can be done with a urine sample, they're an easy one. Also, I intended a while ago to get Tom's food allergy panels re-done, but I think I only want to do the IgG one, again through Great Plains, because that is a finger prick test, again, that I can do at home.
So, we'll hopefully move on that.
I'm also considering going further down the metabolic genetic route. Since he has MTHFR gene issues, it wouldn't surprise me if he also has other issues along these lines. I don't think he has anything more significantly problematic, but, it seems like quite a few of these little ones can add up.

Anyway, in other news, I picked up a pair of Atomic skis for Tom. They're used, are $60 plus a small fee to adjust the bindings. Also, they're part of Ski and Golf's little trade-in program, so next year we can turn them in, pay $30 and pick another set of skis if he's outgrown these. So, in a few weeks we'll be all set.

Ringworm.

2011-10-16T20:06:00.000-07:00

So, the consensus out there in the webosphere seems to be ringworm. So, I'm treating it as such - MCT oil as an anti-fungal and covering it with a band-aid to stop kiddo touching it. There are a couple of ideas as to where it came from, either swimming, preschool or camp. I'm reasonably confident he hasn't been bitten by a tick and I don't think it came from the dog.
Anyway, that's the exciting news over with, here is an update from the week.

On Weds I left for Las Vegas, leaving Jeff, Tom and Mr Ness home alone. Tom had his usual routine, aside from no school on Thurs. He had skating on Weds and did the session without the walker, but with a hockey stick and puck, so the plan is for him to go on to hockey skates next week. I tried the skates on him that I picked up at Dicks for $10 and I think they fit, so, we'll take those along for him.
Tom did great for Jeff, although, typically, now that still keeps Jeff thinking I have a life of luxury. Typical. Jeff also took him swimming on Thurs and reported that he did well.

In Las Vegas I was lucky enough to be able to catch up with a good friend of mine and her daughter and hubby. Little A is awesome. So funny and precocious. It was wonderful and I hope we'll be able to get together again soon, and the kids too. I have a feeling they will get on. Tom's pretty good at sharing and likes a fun companion. I also had dinner with another good friend's hubby, as well as getting a girl's night out.
One resolution to come out of the girls night. I am going to find some shoes that are high, slinky looking, but ones that feel like slippers. I'm going to go through my shoes I think and either sell, consign or donate any that just don't fit me since my feet grew half a size after Tom. I think by now we've established they aren't going to shrink back.
This week in Las Vegas was also ARI. I had the opportunity to meet with Dr Martha Herbert and also to attend her talk there. It was the first time I got to sit in on a clinical session and it was fantastic. Not that I'm even close to being an expert by any stretch of the imagination, but after being on this road for a couple of years now I sometimes feel that the general session talks are a little too simplified for my curiosity. Anyway, it was awesome and Dr Herbert has a book coming out next year that I'm very excited to read. For those who don't know, Dr Herbert is at Mass General, a pediatric neurologist that is a research director with Harvard Medical School. She's an amazing woman who really has the ability to bring biomed into the mainstream. It's an exciting time in the autism world.

Today we had soccer for Tom and we also went to an ice hockey game at USAFA this evening. Tom lasted the whole game and had a great time. He also became a 'bird' stalker. Wonder if he realizes there's a genetic predisposition there too. No. Not me. Wouldn't catch me dead in yellow tights.....

OT Assessment Results

2011-10-11T16:30:00.000-07:00

As I've mentioned before, a few weeks ago Tom had his annual re-eval for OT. Today I finally got the results of that evaluation.

Our OT provider uses the Peabody Developmental Motor Scales-2 for this test and it looks at Object Manipulation (catching, throwing balls and the likes), Grasping (hand dexterity), Visual Motor Integration (visual observation, hand-eye coordination etc) and Fine Motor.

At last year's assessment Tom was 41 months old. He scored as follows (represented by the chronological age equivalent of his skill level)-
Object Manipulation - 32 months = 9 months delayed
Grasping - 20 months = 21 months delayed
Visual/Motor - 37 months = 4 months delayed
Fine Motor = 16% percentile.

So, pretty poor really.

This year's results are much better. His age for this assessment is 54 months.

Object Manipulation -52 months = 2 months delayed
Grasping - 43 months = 9 months delayed
Visual/Motor - 52 months = 2 months delayed
Fine Motor = 21% percentile.

So, he's had considerable improvement in all categories, but especially in grasping (gained 23 months of development in 13) and object manipulation (gained 20 months of development in 13).

He will still continue OT services to really catch him up to his peers, but he is finally into the 'average' range for 2 areas, barely, but he's still there.
Yippeee!! I love seeing progress.

Hopefully next week I will have the results of his speech annual re-eval as well.

Another Little Brag...

2011-10-10T18:17:00.000-07:00

Tee hee - I have something else to brag about, and, since this is my blog, I'm going to go right ahead and do it.
Tomster is somewhat of a whiz on a computer. We're not just talking about a quick game of Plants vs. Zombies here, but he's been making Lego City Comic Books this afternoon.
He's figured pretty much the entire thing out, some of them by watching Jeff do an action ONCE, after that, he expands on it himself. He's also printing his own designs too.
Tom is not a particularly creative child, in terms of artistic ability, so this is an awesome way to add some creative design skills into his repertoire. As much as a 4 yr old needs anyway.
He loves Lego - especially the Star Wars and City stuff and often combines the two.
I'd recommend Lego for any kiddo on the spectrum. Pick a theme they enjoy (pirates, space, knights and dragons etc) and it will open up their world. It's also great for fine motor practice.
Then add to that the amazing website they have, including games, all their products, mini-films and now comic builders.
I saw an article a while ago talking about obsessions being preferred interests and instead of teaching children with autism to attend to non-preferred activities, we should be indulging them and encouraging activities that could turn out to be both amazing gifts and future careers at the same time.
I do agree with elements of this. We should encourage any gifts that any children have, but maybe particularly those that children with autism have, because, honestly, I believe that is the best way to reach some of them.
It could also provide them with a career, as the author of this article suggests.
There is also the sad reality though that we can't always spend all of our time on what we prefer, otherwise we don't end up able to function in the world, or get through a very general education system, so a balanced approach is probably the best solution. Try and increase the tolerance for the non-preferred whilst nurturing any special interests.
But, right now, I'm really pleased that not only is kiddo pretty darn good on a computer, he loves it and it allows him to express himself. Score.

Jumping Jacks!

2011-10-09T19:19:00.000-07:00

So, Tom went to soccer practice today and as part of their little warm up, they do jumping jacks. Here is Tom's version of jumping jacks -

We (meaning Jeff) decided that a little intervention was probably needed, but, the problem here is a genetic one. No, nothing like that, but, I don't have any arm to leg coordination either - ask my sister about her post-natal pilates class I tagged along to. Urgh. Not pretty.
Here's the intermediate - starting to get the concept, but the maternal handicap is clearly visible -

And here in all his glory is kiddo having finally got it, albeit slowly.

I guess from the first video we're also going to have to work on his numbers again.....

Home

2011-10-08T16:57:00.000-07:00

I'll throw it out there - Colorado Springs is feeling like home. As a military family, that's something you don't often feel. We move so often we barely settle in somewhere, unpack most of the boxes and then before you know it, it's time to move on. Of course our past few years have been odd - we just didn't really settle in TX because there just isn't the outdoor life we like there (skiing in particular) and for AL we knew we weren't going to be there for longer than a year because of the program Jeff was in.
There have been good and bad things about all of the places we've lived.
For example, in TX we have wonderful neighbours and loved our house. We loved being close to the base so I could meet Jeff for lunch, do at least some of our shopping at the commissary and our gas expenses were almost nothing. I loved the San Marcos outlets. TX people are great - they're welcoming, kind and unique. They love their military and are very patriotic, despite the threat to leave the union. TX taxes are awesome, ie, non existent, which is part of the consideration for us retaining TX residency.
AL was much much better than our expectations. I had a rowing club, the people we met were lovely, the southern accents very endearing, and I really did honestly enjoy that year. I loved Tom's preschool. I wish we could have brought our ABA tutor with us (Gio and I miss you Emily!). I loved the fact that my garden produced enough to share.
But, CO feels like home. I have confidence in the schools here, I like the seasons, I love seeing mountains.
I hate that I feel this way when we still have 5 years to go until Jeff can retire from the military.
There is every chance we might move again one more time before he's done, and that's OK. We expect it. Don't get me wrong, I am fully aware that's a possibility and we will accept it with good grace if it does happen. The military has been good to us. The salary is great, the medical benefits are awesome, especially for Tom, especially right now, just when we need it.
But, I have to be honest, I would stay here. I finally have a group of friends here, I like the climate, I love the view, the schools, the facilities here in town. Tom is simply thriving here. He loves it, and so do we.
Jeff says it's a cliche for USAFA grads to stay here, or come back here post-retirement, but he admits he's loving it as much as I am. He has great fly-fishing and recently had an awesome time camping with friends in RMNP. It really does have almost everything for us, including a choice of airports and a philosophical vaccine waiver.
But, then again, we love Bozeman, and it's still a complete toss up. Bozeman is a much smaller town, much closer skiing, great community. But, and it's a BIG but in this economy, Bozeman has fewer jobs. And that has to be a consideration. I suspect for someone with Jeff's background and interests, there are more jobs here in CO.
I'm a little fed up of living in the moment and enjoying the present. Not that I don't, of course, but we are getting to the point where retirement from the military is within sniffing distance and we need to think about it. I do wonder if every military family feels this way after 15 and a bit years? Just ready to buy a house and settle down, where the friends your children make in preschool, they go to elementary school with, and the elementary school program you spend so long thinking about is the one you want them to finish their elementary school career in. It can't be just me surely?

First Snow!

2011-10-08T09:23:00.000-07:00

First snow of the winter!

So, Oct 8th officially marks the first snow of the winter for Colorado Springs. It's cold! Not sure I'm ready for winter to be on us yet, which is just as well, since next week it's supposed to be back up in the 70s. Strange place.
Of course Tom is super excited. His first suggestion was to go skiing today, which might seem bonkers in Oct, but, apparently one of the resorts is already open.
Hopefully, Tom will really get the gist of turning and stopping this year, that should be a reasonable expectation, especially since he's starting to get more of the moves in skating.
We were going to head to the USAFA ski swap/Oktoberfest today, which we're not sure is still on, if it is, we'll try and pick up some skis for the Tomster. They might need to be serving mulled wine with the brats instead of beer...

Oh and as a quick addition - we scored Tom a brand new pair of ski boots for $35 at USAFA outdoor rec. It's cheaper than renting them and hopefully we'll be able to sell them on at the end of the season...

Folate and Nails..

2011-10-03T08:26:00.001-07:00

So, folate is linked to nail growth and cell renewal. For the first 3 or so years of Tom's life I never cut his nails. In the year and a half that followed I cut them maybe 3 or 4 times. In the last month I've cut them 3 times. Coincidence? I don't think so. Wondering whether kiddo had such low levels of usable folate he just couldn't spare it to grow fingernails....

Immigration

2011-10-02T09:16:00.000-07:00

Whilst I'm on subjects that are somewhat controversial, I'm going to rant a little about immigration, or more specifically, 'illegal' immigration.
I'm not anti-immigration, I came to this country as an immigrant. The country was formed from immigrants, sadly at the expense of the Native Americans, which I hope is something that is now being rectified through reservations and self-governance on those reservations.
So, the past aside, I am however anti 'illegal' immigration. Let's call a spade a spade here. When you enter a country through an area other than a designated border crossing, or you enter without authorization, or you overstay a visa or break the terms of your visa by working, you're not 'undocumented', what you have done is against the law, or illegal.

Much has been made of the talk of Rick Perry in this political campagin of him signing into law a provision for the children of 'undocumented' migrants to receive in-state tuition at Texas public universities. I fundamentally disagree with this (and since I'm a TX citizen, I have the right to say that). The argument is that since the children themselves are not responsible for being brought here by their parents, they should not be punished for it. They must have been here for at least 3 years and have graduated from a TX high school.
The argument here for funding is that since their parents are paying sales taxes in TX (since there is no state income tax) their parents are paying similar amounts to the state and therefore should have that benefit too.
These children have already received a decent education to high school level, at taxpayer/state expense.

What we are talking about here is the access to higher education. Since when does a subsidised university education become some kind of human right? A right that is apparently not extended to say, students from MA that wish to study in TX. They would be paying probably $20,000 a year more in tuition than a student who is here in the US illegally.
I understand that these kids don't come here of their own decision, but, once they are 18, they are adults. They could enroll in TX universities as foreign students, get a visa, become legal, and pay for their education as such, ie at the unsubsidized rate. Yes, there are rules and regulations associated with this, but, can't we work out something to this effect? Or, as the rules stand I believe, they can enlist in the US military and earn residency/citizenship through this route. Also in the process they earn a GI bill, which will pay for their college education after 4 years. Yes, the military is not a choice everyone wants to make, but, it is an option.

The point I'm making is this - let these kids who are now adults put themselves on the legal path, which I would assume is what they want. I sure as hell wouldn't want to live in fear of immigration services knocking on my door and being deported with no warning to a country I don't know.
Also though, let's not forget the parents' role in this. They brought their children here, they should be responsible for them.

There is also a lot of talk right now of a new law in AL that requires public schools to collect immigration information on students. They are saying that it is not a law enforcement issue, there is no link to police and the likes, just that they are collecting the information. I don't buy this denial that the information won't be shared, of course it will, and neither do the immigrant population of the state, amid reports that over 200 students just in Montgomery county (where we used to live) not showing for school since the judgment went through.
Also, many students have disenrolled from school. Of course, this stinks for these children, but, let's go back to my point above, the parents should bear some responsibility for this, not the local taxpayers, which, in AL are those who pay both property and state income taxes.
By definition, if you are 'undocumented', you are not paying state income taxes, you do not have a SS number and you have no mechanism for it. So, by your children attending public schools, you are using services to which you are not entitled and have not paid for.
Here's a suggestion - allow the children of undocumented migrants to attend private schools, where they are not using public funds. Yes, this creates a problem for the parents who are often working low wage jobs, below minimum wage and with no benefits. Why not allow the legal immigrants within these communities to set up schools for these children? Allow them to attend without access to public funds. Allow the communities to fund themselves. If they can't, then, that's a choice they should make as to whether they want to stay, or would be better off returning from their country of origin.
The parents are often being completely taken advantage of, and this is not something I agree with either. They are being exploited and the employers are the ones who should be taken to task.

Right now the US is broke. We are in massive debt to China because we've chosen to outsource our technology and manufacturing jobs to a country with horrible human rights and sneaky governance. We should be ashamed. Half the reason our unemployment rate is so high is because so many good-paying jobs have been outsourced and we pay people to sit on their arses to save $10 on a phone. It make no sense, but is beyond the scope of this rant. We simply cannot afford to spend money on people who really, shouldn't be here and they should understand that.

Yes, the states are independent and have the right to choose what they want to spend their money on, but there should be some limit to that. I am fed up political hankering to communities where votes are prioritized over what is most appropriate and reasonable.

Migrant workers add a lot to our economy, but, in times of 9% unemployment, we should be prioritizing getting those legal people in work, even in jobs that pay less than those they previously held. And yes, I know many people don't want to work for low wages, at least when they're getting unemployment extension after extension, and losing in the process their dignity and pride and increasing resentment towards those who are here from other countries, whether legally or not so.

Immigration in this country is a mess. There are visas and legal mechanisms for seasonal work and other types of employment for migrant workers. These procedures should be simplified and enforced. Borders should be more secure. Those here illegally should be deported. Those children who are here because their parents have broken the law should not be punished as criminals but there should be routes for them to become legal in perhaps the only country they have ever known, but not so that they become a magnet mechanism.

Let's try and be fair, not by offering amnesty, but by reforming the laws to stop the flow of parents coming in, whilst getting the kids who are becoming adults sorted out legally.

I don't support allowing adults coming into the country getting legal status. Allow the blameless kids to gain legal status and sponsor their parents through the legal route. I had a friend at MIT who had been waiting 4 years for his wife to join him in the US legally. They waited. They stuck to the law of the country they wanted to call home. Why should it be different for anyone else?
Hold those who break the law (as adults) accountable, otherwise they will never learn it's not the way to do things.

Anyway, I'm sure there are plenty of people who disagree with me, and that's fine. I'm entitled to my opinion. I'm not heartless. It was hard work and VERY expensive for me to come to the US legally. I consider it a privilege to be here and I respect the US law. It annoys me that there are others who break the law and are rewarded for it.
There is a big difference between legal immigration and illegal immigration, but the US people as a whole seem to have tarred the legal immigrants with the same brush as the illegal ones and that's not right.
When we lived in TX we saw lots of both. We met some wonderful people who were legal immigrants. They were hardworking people who were trying to make a better life for their families.
But, we also saw an illegal immigrant run a red light, hit and kill a tech executive in Austin on a motorcycle, then try to flee the scene. Yes, anyone could have done this, there are plenty of bad legal drivers, as well as other criminals, but he was trying to flee the scene because he was illegal. A passer by tackled him and held him until the police came. I can't help feeling that if that man hadn't been in the country, that victim would still be alive now.

Anyway, I'm not heartless, I just want some fairness and I wish the politicians could see that. I want the current laws enforced, but I want reform to the laws to reflect some of the current situations. It's just not realistic to blanket deport many of these people. But, it's also not right to subsidize people at legal residents and citizens' expense, not in an economy such as this. Please, level the playing field. If people want to come here to seek the supposed 'American Dream' then they should do so on the same terms as everyone else. Pay taxes, compete fairly for jobs, otherwise, expect to pay for the services you want (education for children and healthcare) and factor that into your decision.
Rant over.

Vaccinations

2011-09-27T09:47:00.000-07:00

I've been asked a couple of times lately what I think about vaccinations. Honestly, I'm not sure.
I think I've always been very clear about this, but let me re-state. I have no idea if vaccines played a part in Tom's autism. That's not to say I'm sure they didn't. I have no idea. Tom never had a clear vaccine reaction, although I have gone back through his medical records and noticed an appt note where it says "child has been irritable for past 5 days" and 5 days prior, he had received a vaccination.
Either way, because I can't rule out any effect, and I feel that prudent is the way to go when in doubt, we stopped vaccinating at 18 months. Tom did receive 1 MMR. He did not receive Varicella.Tom does have GI symptoms, although they started prior to his MMR.

Anyway, whilst I don't know if they played a part in Tom's autism, I do have friends who have witnessed major regressions in their children, loss of language, seizures etc within hours of a vaccine. I don't discount their accounts of what happened to their children. Parents know their children best. I wish doctors could grasp that concept.

There are several issues with vaccines that make me uncomfortable.
- If your child or you are injured by a vaccine (and be under no illusions - the manufacturer states that there can be serious side effects, including death) you cannot sue the drugmaker. Even if the injury is because the manufacturer opted to not improve a vaccine formulation to improve safety, you cannot sue. You also cannot sue the CDC for recommending a vaccine, or the FDA for approving it. There is a process in the US called 'Vaccine Court' which is conducted behind closed doors, with appointed 'special masters'. Scary. Who doesn't want a hearing in open court? Basically, what I'm saying is this. If side effects are so rare, who would be afraid of a lawsuit in the case of injury? Or even in vaccine court, who would be afraid of it being public? You can sue a drugmaker for injury for any other drug, but not vaccines.

- The Supreme Court has ruled that vaccines are 'unavoidably unsafe'. That's worrying.

- Vaccines, despite what you have heard, are not tested together, as administered. They are tested in isolation. So, there are no documented studies on the combined effect on the immune system of combined vaccines.

- Very recently there have been cases of the 4 in 1 flu shot (including H1N1) causing narcolepsy. Narcolepsy is a neurological condition. Autism is a neurological condition (supposedly). If a vaccine can cause encephalopathy and neurological conditions, who's to say it can cause one but not any other? I don't think we're quite that far along in our medical knowledge yet. The narcolepsy cases seem to be the cause of genetic variations present in a population in Finland. So, vaccines can interact with genes. There was also a study out yesterday talking about MMR response variation with different genetic populations and one of the first mentions of a 'one size fits all' vaccination schedule (as it is currently) not being the most appropriate. So, genetic variation can affect both immune response and potential side effects. Interesting.

- Researchers have identified that there is a subset of autism where there is a difference in immune function. What do vaccines do? Ah yes, they stimulate the immune system. Why then can't a vaccine be a factor in altered immune function? I guess I just have trouble with the constant blank denials of any possible problem or contribution. Why don't they just say that they're concerned about it. I am.

- Now they are recommending that only people with severe egg allergies avoid certain vaccines. Tom has mild egg allergies, but with multiple antibody type involvement. I guess this goes back to the previous point about immune stimulation and response. I am concerned about overtaxing an immune system that might already be problematic, otherwise, why would my kiddo have food allergies at all?

- Thimerosal. I don't know whether it's responsible for some cases of autism or not. But, why are we injecting anyone with mercury? It's a known neurotoxin. The amount in a single vaccine is enough to warrant a strict protocol for cleanup in the case of a spillage. There are alternatives to using it, such as single vial, preservative-free vaccines. Why don't we just get rid of the stuff from all vaccines and answer the question that way? Also, don't go thinking that it has been removed from all vaccines. It hasn't. It's still in flu shots.

-Aluminium. See above. It's a known neurotoxin. It's thought to be linked to Alzheimers. I don't like the thought of injecting Al into my kiddo when he already has neurological problems.

- Bully tactics. I don't like doctors that bully parents. It's just wrong. Doctor's have developed god complexes. They think they know everything and they don't. Most aren't real scientists. They don't look for the cause of symptoms, they just prescribe something to alleviate them, in the process sometimes causing other problems that need more drugs. I don't like that the doctors take money from drug companies. You cannot honestly tell me that it doesn't sway their thinking when they have thousands of dollars in extra revenue coming in to their practices.

- Drug companies being less than honest with their research. Oh, and let me clarify. Drug companies conduct their own research on their products, and the FDA and CDC accept it. There is not independent testing on the products. They also hire 'troubled' doctors as educators. Like the money doesn't sway a doctor who cannot earn a living because of negligence or malpractice. Hmm...

Anyway, so, with those few points out there, I'm troubled by vaccines. I don't take the FDA or the CDC's word for it that vaccines couldn't contribute to health problems. There is just too much money at stake.
I make no claims either way. I just choose to not further vaccinate until I am comfortable, and I don't know if I ever will be. I haven't even gone into the issues I have with aborted foetal tissue or recombinant DNA in vaccines. That's just scary.
We are lucky to live in a state where there are all kinds of waivers for vaccination for school attendance. Tom has a medical one. His doctor and I both feel that it is not medically appropriate for him to receive any. I'm just glad we have a doctor that I trust.
There is obviously much much more to this debate, but I wanted to at least throw out there some of our reasons for doubts. It is up to all parents to research for themselves and decide what they are comfortable with for their own children.

Oh and the final thought - vaccines can result in autism. Ask Hannah Poling's father. He's a neurologist and they won their claim through vaccine court....

"Wuke" Skywalker

2011-09-26T13:28:00.000-07:00

So - here it is! This is the costume that mum made (with my help I should add - although she kept stealing my sewing machine) for the Tomster. It's my belt on him, which I guess needs to be tightened up a little bit on the skinny minny, as well as a few little pouches added.
Mum and dad also got Tom a lightsaber, which was a HUGE hit. So, aside from some little boot covers, he's pretty much done.

Touristing Further Afield

2011-09-25T20:43:00.000-07:00

Today we took off with the Harrises for their last full day with us to Rocky Mountain National Park. The weather was beautiful and we got out of the car several times for walks around various little landmarks.
It was also a great opportunity to try out the new camera again, although, I wished I'd have taken my other bigger zoom lens.
So, rather than yap on, I will just post the pictures...

Tom with Nanny and Bampi

Stockwells

Walking around Sprague Lake

Mum, Dad, Sarah and Tom at Sprague Lake


First Panoramic Shot at RMNP

The panoramic shot above was taken as 4 pics and then squooshed together using Canon Photostitch. What an amazing piece of software that is. Not a bad little pic either methinks.

Touristing in the Springs

2011-09-23T15:49:00.000-07:00

Harrises at USAFA

So today, the 'rents and I did a little touristing whilst Tom was at camp. They have been in town for the past week and a half and it's been wonderful to see them. We had a good chunk of time to wander around the AF Academy and also time to catch noon formation as well as hit the gift shop.

Mum and Sarah

Cadets at noon formation

The weather was gorgeous and I will add I did stick my jacket in my bag, but at the time the pic was taken it was enough to offload some of the junk I was carrying.

Chapel Exterior

Chapel Interior

I should also add here that I took my new camera along to try and continue the setting exploration.
Anyway, a lovely morning that is now being finished off with a cold blackberry witbier.
In other news, Tom had his annual OT re-eval the other day, but I don't have the results yet, and he continues to do great in school and be obsessed with Star Wars.

Shiner

2011-09-19T19:47:00.000-07:00

Tom's got a black eye. I'm honestly amazed that it's taken him this long to get one. He's such a busy and active kid that it was inevitable and this past Saturday I got a call from his ABA office that he'd fallen over whilst playing tag during a sensory session. Of course he was more upset that after having an ice pack on his eye for a few minutes that he'd missed the end of the sensory session and had to go to circle time instead. Typical.
By today the bruise had developed a little more (in the inside corner on the pic above) and his eye was a little puffy in the morning. Hopefully it will heal up nice and quickly.

In other news, the Luke Skywalker costume is coming along amazingly, thanks to my temporary resident competent slave, aka, mum. It's pretty impressive. Pics to follow when we can bribe Tom to model.

A Day Out with Thomas and Friends!

2011-09-12T06:52:00.000-07:00

Tom and Jeff in front of Thomas

Yesterday we headed to the Colorado Railroad Museum for their "Day Out with Thomas and Friends". The museum is in Golden, just outside Denver and Tom had been very excited to go. He loves trains - he's always pointing them out and has quite the collection of the wooden railway. It was one of the first things that Tom started doing pretend play with. He would have the trains talk to each other, leading into him acting out scenes with them and on to them having adventures he'd made up himself.
When this opportunity came up, we figured we would take him, because who knows, maybe next year he will have outgrown them. He's already moved heavily over to Lego and Star Wars.

Tom on Thomas

So, we headed to the museum and, yes, sure enough, he loved it. The day included a ride on Thomas and he especially loved the model railway setups they had there, one outside, one inside. He must've watched the outside one for over an hour total (we came back to it). He also achieved something I've never previously seen. Whilst we ate (he'd eaten when Jeff was getting something for us) - we told him to just stay in a little area in front of us and not to run off. He did. I think he stayed in that area for 20 mins without a single prompt.

Loving the model railway - especially watching the trains coming out of the tunnels

Tom and Sarah in front of a train

Prior to small paddy

Mum and dad are currently visiting with us and also came along, and out here apparently it was grandparent's day (which I only saw on the calendar after we got back) yesterday. I don't normally do those kind of hallmark holidays, but in this case, I was glad that they were able to share in a day with Tom and especially one where he did so well. We had one little paddy where he wanted to stay longer to play with the train tables they had set up, but other than that, no bad behaviour. He did a fantastic job. He had great manners and was very compliant, putting some other children to shame there. Plenty of whiny kids 'wanting' stuff. Yay. A good day for the Tomster.

You Choose!

2011-09-08T13:08:00.000-07:00

I wanted to do a quick post about a book that's currently a big hit in our house - You Choose.

Here is the link to the Amazon page for it.

For a kiddo like Tom who has trouble with communication, it's a fantastic tool to encourage not only opinions, but 'why'. Why does he want to go to the city? In Tom's case we've discovered that he wants to live in a tower block (hopefully a yuppy version rather than the council-provided equivalent) and wants to go to the city because he loves tall buildings, because he has reasoned that tall buildings have elevators. Bingo. It's a great tool to introduce conversation and reasoning. It's also fun as a family that we all get to pick items we'd like at story time with this book. We tend to use this book as a way to introduce reasoning concepts, we always explain why we have made the choice we have and have him do the same.

Tom was lucky enough to have his auntie Lee send him his copy for a birthday gift, but it's well worth the $4 from Amazon. Oh, and hope I haven't caused any copyright issues by copying the picture.

Rocket Tom!

2011-09-07T19:51:00.000-07:00

So, here is a little video of the Tomster at skating tonight. He likes the little walker - it gives him more confidence to do what he gets so much enjoyment out of - going fast. He's doing pretty well without the walker too.

Tom tonight was a complete performer. Some ladies in the stands were giggling at him racing around and clapped him when he came off the ice. He lapped it up, showed off for them, then headed straight back to the ice.
We could barely keep him off it tonight. Yes, he likes to explore, go visit the Zamboni etc, but he spent a lot of time tonight racing around on the ice. He also insisted that Jeff and I watched him from the stands. I love this program.
Tonight there were a bunch of kids from the ice-dancing program there practicing. Some were amazing, apparently they have a competition in Poland next week. Despite Jeff's lack of enthusiasm for boys and figure skating, there is something very impressive about a chap who can pick up a girl over his head and spin around carrying her. Very cool to watch. And I wouldn't be a bit disappointed if he chooses to continue skating, even if it is figure skating rather than hockey....

More Than One Autism? Wow - Imagine That?!

2011-09-07T12:46:00.000-07:00

Here is a post I saw on FB today (Thanks Lin!)

http://www.theaustralian.com.au/news/health-science/us-researchers-discovery-promises-answers-on-autism/story-e6frg8y6-1226131763200

The basic gist is that they seem to have finally found a way to group some kids with autism into categories - immune, brain development - so far they have a couple, but they believe that there will be many subtypes of autism found and that will steer treatment of the disorder.
Wow - if I had a penny for every time I or other parents of ASD kids I know have said this, I would be a rich woman. There is simply no other explanation. There are different triggers for the kids, different systemic problems and therefore different solutions.
For example. Tom has MTHFR, food allergies, yeast issues and dysbiosis, as well as metal retention and possible mito problems. Other kids we know of don't have yeast issues, don't have food allergies, but do have viral problems. Some don't respond to chelation, some do in a massive way. Some kids have seizures, some don't. Some are verbal, some not. Some have physical delays, some not so much.
Anyway, do you see what I'm getting at? So many different problems and physiological differences, but one diagnosis. And, that one diagnosis is based on clinical observation. Not lab work. Not scans or imaging. Observation. And sometimes the person observing isn't all that clued up.
So, this could be the first step in what MUST follow. Get the real data. Do the bloodwork. See if the kids have metabolic differences. See if they have genes that predispose them to these differences. Test for folate antibodies. Check their immune systems (including GI). Then, and only then, start looking for similarities and differences. Once you have the subtypes, you have a grasp on the issues, then you can start real treatment and then you can move towards prevention.

With Tom our approach has always been to test for problems, then treat the problems based on the lab results. Can you imagine if every child with ASD was treated this way by their doctors? If the treatment brought on even a 20% improvement, can you imagine not only the improvement in the child and family's life, but the cost savings to schools and govt?

I have always said there is more than one autism. Autism parents have long said that their children were medically different - affected by many different things. One thing's for sure, if they are able to group autism into medical subtypes, then autism must be redefined as medical and should move out of the DSM.

Update - here is the link to the paper - Here

Props

2011-09-04T14:59:00.000-07:00

So, like many kids with ASD, Tom has some issues with fine motor control and planning. He has OT for this, as well as an ABA fine motor program. One of the things on his list is a "button / unbutton" task.
Since yours truly has an intense hatred of buttons, he doesn't have a piece of clothing with buttons on it, and he's not ready for those little buttons anyway. So, out came the fancy project runway sewing machine and I decided to attempt a little prop for Tom to practice with.
Not bad if I do say so myself. I also discovered that my sewing machine can sew buttons and buttonholes. How cool is that? Even if this kind of thing is the only thing I'm likely to use the settings for...

Star Wars Obsessed

2011-09-04T10:16:00.000-07:00

The Tomster is completely obsessed with Star Wars. Everything is done to him singing the theme song and spaceships have overtaken fire trucks as his choice of lego constructs.
So, he wants to be Wuke Skywalker for halloween. And guess what? There don't seem to be any patterns out there for said costume. So, I'm going to give it a try and see what I can come up with over the next few weeks...

More MTHFR Info

2011-09-02T21:09:00.000-07:00

So, I found another paper tonight that talks about increased risk for autism in the presence of the two mutations in MTHFR that Tom has. For children with both C677T and A1298C mutations, there is an 8.11-fold increase in risk for an ASD. I don't know about anyone else out there, but this is pretty significant in my books.
Firstly, it says if your kiddo has these mutations, their risk of ASD isn't the 1 in 58 for boys, it's close to 1 in 7.5. This is a pretty scary statistic. I should also add here that these mutations are inherited ones.
But, from my standpoint, if we understand what these mutations do, for a start we know they inhibit methionine production by inhibiting the conversion of folate to the active folate version, then we can potentially treat this. There are already so many parents who report improvements on methyl B12 and folinic acid type interventions, this is another data point to help with understanding.
Here is the reference - http://www.ncbi.nlm.nih.gov/pubmed/19440165
Incidentally, we're still seeing more calm behaviour and expanded language from the Tomster. Still monitoring though...

Staying at Home

2011-09-02T13:31:00.000-07:00

So, I've probably already said this a hundred times, but I am a reluctant stay at home parent. I never intended to be at home for this long. I planned to take a couple of years off after Tom, but thought I would have probably gone back to the rat race by the time Tom was 3 and definitely by the time he was 4. Well, here we are with him being 4.5 and I'm still here. Most of the time I moan about it. That I don't get to have a career, regardless of direction, and that I don't get to have my own schedule, more that I'm completely at the whim of Tom's.
Well, today is one of those days that I thank my lucky stars I'm able to stay home. I'm grateful that we can afford for me to stay home with him and that I have the time to be able to go to meetings at his preschool, without having a job to have to work around.
Tom's teacher wanted to meet to chat about him, his challenges and progress, but also as kind of a pre-IEP meeting, since the IEP meeting needs to be complete within the next 2 weeks. Add to this then that the preschool autism specialist also wanted to join in on the discussion.
I have to say that Tom is a lucky kid to have his school so interested in his well-being and future. These two ladies are fabulous and want him to do well, and want to know how best to continue his amazing progress. I have borrowed a copy of their SCERTS curriculum assessment and planning manuals so that I can also be familiar with how they plan on working on goals and implementing them. I hear so many stories of bad schools and bad districts, and, I know, as I've said before that people often say that it can change for the worse when they get to kindergarten, but, right now I'm completely happy with his school provision. Also, his teachers, SLP, OT and autism specialist actually want his BCBA to go to school so they can talk with her and figure out how best to work in a complimentary way to his ABA programs and system.
So, given days like today, I'm happy to be unemployed. Perhaps it'll keep me ticking over for a few more weeks....

A New Gadget

2011-08-31T15:29:00.000-07:00

Yipppeeee! My new gadget arrived. Since my old Canon compact was stolen in our lovely burglary, I get to replace it, and since I have already replaced it with a compact, I decided to take the plunge and buy a digital SLR. Long ago when I worked at Dixons, I used to sell cameras. I learned enough about them to sell them, but I never had one of my own and couldn't speak from actual experience. This was the perfect opportunity though.
I got a fantastic deal through Amazon and managed to get the camera and 3 lenses, plus a filter (not sure what I'm supposed to use that for yet though) for $810, including shipping, but tax-free. I got myself a Canon Rebel T2i and I'm very excited to see what I can do with it.
As I've already eluded to, I'm not a photographer. I like to take pics, but I rarely change the settings on my camera, I keep it on the little green square.
So, today, I've been playing with my new toy and decided to try out some of the other automatic settings before I start fiddling manually with it.

Here's a macro setting shot -

Here's a portrait setting pic of Tom -

Of course I had to down-grade the size and resolution to get them on the blog, but I'm starting to see the difference in the settings, so that's progress. Of course, these are probably not good pictures to those people out there who already know what they're doing, but I just wanted to see if I could see the difference in the auto-modes. And, be warned, if you know what you're doing, I will be picking your brain for tips.
I should probably also apologize for all the ranting about said new gadget on FB, but it's been so long since I bought one, I figured I was allowed.

MTHFR and GABA

2011-08-30T08:33:00.000-07:00

So we know that Tom has defects in his MTHFR gene. Also, GABA - a common supplement (that is normally produced in the brain) regulates calmness and hyperactivity. We've tried GABA supplements a number of times and they just haven't worked. Well, the past few days we've had Tom on 5-MTHF (activated folate) and his methyl B12 and have seen amazing jumps in cognition and speech, as well as awareness. Today though he seems subdued, which, for anyone who knows Tom, knows that's just not him. Still fidgety, but subdued.
So, I decided to take a quick look into whether GABA and MTHFR can be linked and I found this.

http://www.bioportfolio.com/resources/pmarticle/74660/Sex-dependent-Behavioral-Effects-Of-Mthfr-Deficiency-And-Neonatal-Gaba-Potentiation-In.html

It looks like they can be. So, I wonder if by correcting the MTHFR we are now also opening up a pathway for the GABA to have an effect? No idea, but since one study shows there can be a link, it's not a far stretch.
I think this is going to be something I will look further into. Maybe we're onto something.

Back to the Routine

2011-08-29T09:07:00.000-07:00

So, today, I believe is the first day of a week that 'should' be a normal one. 4 days of school, 6 days of ABA, 2 days of ST/OT each. No TDYs. No medical appts. The Y is open again. Only one other appt which is a parent-teacher meeting.
I'm hoping that being back in a normal routine will finally help with the 'flinching threshold' that seems to have been reached almost every other week of the summer. I literally get to a point on the weekend, where I cannot take anymore whining, lack of compliance or running off. I start flinching when it happens.
Hopefully, a normal week will help eliminate this on the weekends. It's tough to enjoy family activities on the weekends when you literally cannot take anymore and you just want some quiet time where kiddo isn't coming to you for anything. So, I'm hopeful.

In other news, Tom's having another enormous speech and interaction jump, as well as a surge in imaginative play. Right now it's mostly focussed around Star Wars and Lego, but he's also very much about 'Webberwy' AKA Reveille, his stuffed dog. This morning he brought him into our room, complete with comb, combed him, then told him he looked very smart. Bizarre. Wonder if it's linked to the methyl B12 I've restarted (but in oral form) and the 5-MTHF (active folate)?

Back to School!

2011-08-24T16:20:00.000-07:00

Ahh.... I love this time of year! It's been a long summer. Tom broke up from school the week before Memorial Day and I have friends whose children broke up after and went back before Tom did.
We did do a month of summer school (which was 3 weeks) in June and because we originally planned on travelling for much of July, didn't bother to sign him up for that month. That was definitely a mistake, given that we didn't end up going to the UK as we hoped - the flights were just too expensive and my sister just moved house, so probably wasn't in the best position for us to visit.

This summer we tried to keep Tom as occupied as possible. We did ABA 3 times a week for 4 hrs a time, did 2 weeks of swim classes 4 times a week, continued with OT and speech and Tom also started ice-skating classes. It was still a struggle, since he is so busy. But, we survived.

This week he started back to preschool, or more specifically this year, Pre-K. This is the last year of preschool for him before starting kindergarten next year. It's also the first time he will do 2 complete years in the same preschool. We did 2 partial years in TX, but we've never had 2 complete years before and I had high hopes that some continuity might help.
All of this got thrown out of the window when his teacher from last year decided to go and do IB experience overseas, which was a huge shame because Tom adored her and did great in her class.

So, this year we have a new classroom, new teacher, all new classmates, new speech pathologist and new attendance times. Hoping that it's not throwing him off too much. Usually he tends to just roll with it and thus far that seems to be the case.
So far his new teacher seems great - she is very organized and is excited to work with Tom this year. I am reasonably confident that we will have a good year. Tom's SLP last year was awesome and she is working with his new SLP, who I met last night and she also seems to be good. D20 have been very supportive so far, and although I've been warned that things often change in kindergarten, I'm going to be optimistic and hopeful. I'm hoping that with all the intervention, our aims will be realized and Tom will be prepared for kindergarten after this year. Of course I still have to wade through the mountains of choices for elementary schools.

My only gripe? Why is there no preschool tomorrow for 'elementary testing'? There are no elementary students or classes at Tom's preschool. None. There is also no preschool on Fridays. Why can't they cancel Friday school so it doesn't affect the preschoolers in the FIRST week back? Bizarre. Perhaps the teachers need a short week after the whirlwind...

As Good As It Got...

2011-08-14T20:20:00.000-07:00

So today we decided to go for a family hike at The Crags, which is a few miles from Cripple Creek, about an hour from home. It was actually a pretty nice hike, especially for kids. Easy, through trees, a little stream and only 1.5 miles long. Sadly, after a good start (see above picture) and about a mile of the trail, we called it a day and headed back to the trailhead. Tom was a brat today. He just didn't want to listen, he kept sitting down and then throwing rocks and anytime you insisted he hold you hand because he would run ahead and not wait, he would start hitting. He just seemed to be having a stinker of a day.
Not sure if it's the gluten he's had this week (we tried some barley in soup), the fact he's now back to home ABA with semi-new tutors, or whether he's just having a bad week.

On the up side though, he appears to have lost the f-bomb which occasionally rears its head (which is usually in the context of "F$%k, Jeff"), and replaced it with another little gem "For god's sake, Jeffrey". Yep. Another one that is completely courtesy of yours truly. It was at least funny in the car today - Jeff took a corner a little faster than I normally like (since I drive like a geriatric) and out came that phrase from the back seat, completely appropriately, but even quicker than I would've been. Chip off the old block huh? At least it brought a giggle from us all.

We also stopped in Cripple Creek for a quick stroll. Sadly the little narrow gauge railroad steam train had just left and we didn't fancy waiting for the next one, and amazingly Tom took it very well. What he didn't take too well was the fact that you needed to be 21 to go in the casinos, not 4. At one point he screamed that he was 24, of course right in front of some old bat who looked a little taken aback, before shaking her head as I got down and told him to behave. Yep - kiddo knows what slot machines are, since he plays them on my laptop, and I'm also afraid that particular preference is genetic. Just ask the Harris family about my childhood occupations during holidays in Tenby. Never mind.

Tom's also hooked on Star Wars, which you have probably gathered from the previous post. He now has some Star Wars Lego, which he loves, and he's also watched the regular movie and developed a pretty accurate Sand Person impression. Again, based on genetics, since this one he will probably get an even stronger dose from his dad of (if that were possible), we're going to living this for the next 5 years or more. Oh joy. May the force be with us.

The Motherf$#ker Gene

2011-08-13T16:22:00.000-07:00

This is how it's referred to by many parents, but its actual name is the MTHFR gene and it's located on chromosome 1.
What this gene does is regulate conversion of folate, using an enzyme, from one form 5,10-methylenetetrahydrofolate to another - 5-methyltetrahydrofolate and it's this step that enables the conversion of homocysteine to methionine by another reaction, which prevents the build up of homocysteine (which can be toxic at high levels) and produces methionine which is used for many different functions.
In fact, methionine is needed for carnitine, which we have already seen a positive effect of supplementing (ie correct functioning of Tom's kreb's cycle) and it is a sulphur containing amino acid which helps with detox, by binding to the metals. Yes, exactly the same as what a chelating agent does.
So, back onto the topic at hand - how does this relate to Tom? Well, we had Tom tested and he has both mutations - C677T and A1298C, which tend to render his efficiency at converting the two formerly mentioned folate chemicals, I believe, to around 50% of their normal level. So, if he gets 100% of his RDA of folate, he'll only be able to use half of it, making him deficient. We had his homocysteine checked last year and it was luckily normal, but that might also have been because I've been giving him supplements of these things since he was 2. If he were to have a buildup of homocysteine, it could lead to arterial problems, blood clots, strokes and neurological problems. So, we make sure that we check from time to time and ensure he gets enough folate to counter it. I should add in here that those are things that can happen, but it takes a long time and only if the hyperhomocysteinemia is allowed to progress without stopping it...
So, this is just another affirmation of the biological aspect of autism for Tom.
Oh, and MTHFR mutations have been found to be more common in kids with autism than typical controls.
The good thing about this, is, it's treatable. We can either give him extra folic acid, or give him the already converted active form of folate and bypass the roadblock.
Not sure what we'll decide, but it yet again reaffirms my belief that we are doing the right thing by pursuing biomedical treatments.

Name That Tune!

2011-08-12T15:29:00.000-07:00

Firefighter Tom!

2011-08-06T14:07:00.000-07:00

Tom loves firefighters and fire trucks. He loves Fireman Sam (could it be a genetic tendency towards the dodgy Welsh accents?) and he sadly loves the $3 DVD we got him from Toys R Us which features a chap called 'Firefighter Bob', all with very odd NY accents. He will watch either of these DVDs for hours if we let him.
Today we got to go one better. After telling him about the Firefighter Challenge at USAFA last night, the first thing he asked this morning was "Is it time to go fight fires yet?". He was so excited, especially since they have a kid's challenge course that's a mini version of the course the real firefighters go through, including hoses, hammers and a dummy to carry.
Luckily we got there nice and early before the queue built up for the kid's course and Tom had the best time ever and did pretty well at all the tasks, with minimal prompts - in fact, we just let him go with the regular course helpers.

My little firefighter is so cute! We even scored a jacket for him just like the one he wore for the challenge for $20. What a steal and I no longer need to think about a halloween costume. Sweet.

Pikes Peak

2011-07-31T14:52:00.000-07:00

We can see Pikes Peak from our deck - it's only recently lost its snow cap and although it doesn't get into the top 10 highest Colorado mountains, it is a 14er. So, today, we decided to take the cog railway to the top. It takes about 90 mins to get to the top of the mountain, so not exactly a quick trip, but the scenery is wonderful and Tom, like many 4 yr old boys, loves a train ride.
It was a really nice morning - Tom was really good on the train and we appreciated the opportunity to get out and do something we've been meaning to get to. (There is a road that goes up, but, it has sheer drops and no guardrail, so we decided to pass on that...) Oh, and don't miss the famous doughnuts and definitely heed the train conductor warning and as soon as you get off the train - head to the bathrooms.

Here are a few pics of our little jaunt -

Keeping Up

2011-07-27T13:04:00.000-07:00

I know I've been posting quite a few of these little musing/ranting-type things lately, you'll have to bear with me because I'm finding it a little therapeutic to do. Call it the adult equivalent of 'getting the wiggles out'.

Anyway, I touched on this with one of my previous posts where I mentioned the subject of judging and competitive parents. I was pleasantly surprised that a few people seemed to agree with me.

One of the biggest challenges I'm finding about parenting is managing expectations. I guess we all have hopes and dreams for our children, but when you throw something into the mix like autism, you really have to be on your guard to not set yourself up for disappointment. It's incredibly frustrating to be constantly aware that it's not so easy to just sign your child up for a summer camp, or even to go grocery shopping with your child, although I think that one can be a challenge even with typical children. It's depressing to have to tell everyone at some activity or at the gym childcare facility that your child has autism, because they look completely normal, but things they do might otherwise have them labelled as a problem child, or naughty. I hate having to tell people there is something 'wrong' with my son because I still feel like it reflects on me, that something I did has caused Tom's issues. But, I know it's necessary so that I know someone watches him more closely and the fact that he still sadly loves doors does put him at risk for flight. It's been great this past couple of weeks that I've only had to explain him about 3 times, since now his swim teacher and the Y childcare know him and give him good reports. It's also nice that now they know his issues, they don't judge him on them either. So, that's been good.
I hope that Tom continues to make great progress, I am cautiously optimistic that long-term, he will be just fine, but, I don't expect it. I don't take progress for granted. Yes, we have a college fund for Tom, we hope he goes on to be successful academically, but, I know it might not happen for him.

So, now I need to vent this. It bothers the hell out of me. I hate show-off parents. Hate is a strong word I know, but it riles me so much that 'don't like' just wouldn't accurately describe how I feel. Facebook is a wonderful tool for all kinds of things, unfortunately, show-off parents have also begun to use it for their purpose of displaying to the world how vastly superior their own children are to the rest of the gene pool.
And, before you say it, yes, I know I'm biased. I'm jealous of these people who don't have to deal with the crap and uncertainty that we do. I don't think it's fair. At least I'm honest about it.

Kids with special needs have their own timetables, as of course do some typical kids, but, some walk later, some talk later, some don't talk. Some have a ton of medical issues, some don't have so much going on. Some potty train late, some don't at all. Some never come out with the witty phrases that typical children do. Some just can't play t-ball, basketball, football, for whatever reason. It's been a big exercise for me in managing expectations for my child (and myself), to not expect certain milestones at the defined times. It's tough. No-one tells you about this stuff, you kind of find it out along the way.

In my case, I'm much closer these days to people whose kids have issues. You can either call it 'misery loves company', or more what it actually is, we have something in common. We seek low stress environments in which to socialize. Many of my friends are very well educated. Many have graduate degrees, are type A personalities, are well travelled, and quite a few have kids with issues. We are exasperated by the competitive parenting environment and the fact that our children just don't fit in well sometimes and because of that, we don't feel like we fit in either.

The problem is, some of these show off parents are also these types, but they never had the issues with their children, so they live vicariously through them. The kids do ballet, gymnastics, karate, soccer, play the piano, read poetry at very young ages, are in gifted and talented education programs, are already expressing before their age is into double digits which college they are going to (not surprisingly they are usually Ivy League). Their parents seek out amazing schooling options that nurture their creative abilities, at 5. I met one lady at the post office who signed up her child for the public charter school at 4 weeks. 4 weeks old and already the pressure was on.

At my ice-skating lessons there are 6 year olds whose parents already have sights set on the olympics, who have chosen to home school their children so they get more rink time.

But, worse than this are the FB show offs who post multiple times of the day about something witty or funny their child said or did, or about how wretched other people's kids can be. Precious Johnny got hit at the park one day by Wretched Ian, how bad that parent is, they shouldn't let their kid out of their house, clearly. Well, my kid has been that child that hit. Sorry about that, he didn't mean it, and I am not raising him that way, but, unlike your perfect child, my kid is young and has hit, as have many other typical children. There was one post on the military autism page about how a 3 yr old with autism hit a much older child at the park, and the parents of the older precious child called the base police to deal with the hellion. Seriously? When did we become so pompous?
I can't stand the quotation posts that people attribute to a child that you just know hasn't said that, not verbatim anyway.
I can't stand constant posts about how much you got done today, unless it's an anomaly. I don't care that you regularly bake dozens of muffins for everyone who is incapable of baking their own, or that your dinner looks spectacular and was cooked from scratch, every damn night.
Don't get me wrong - if you make an amazing cake now and again, I want to see it - since I can log you as a source of recipes, or that instead of making scrambled eggs on toast, you actually pulled off a complicated gourmet dinner for your family. I'm suitably impressed, but not when it's a constant feed, multiple posts, every day of the week. Please, just get a blog.
I don't care that your child is obviously gifted, or so you think, at 2. Why don't you just be thankful that you're not having all the issues others are, without having to gloat. Again, the occasional post is fine, but not every day. Are you trying to convince us of your child's brilliance, or yourself? Some people post things about their kids that, honestly, as as ASD parent, concerns me, things that are red flags for problems, but the parents are the type that you could never suggest that their child has issues that probably should be checked further, because that parent is so utterly convinced that their child is perfection defined you could get struck by lightning for even daring to suggest it.
I'm not saying don't post about your kid - heck, I do, but, does every post have to shout that child's accomplishments from the rafters?

I think a lot of these posts stem from parents who aren't honestly all that happy. Maybe they'd prefer to be out working, travelling or the likes, without wiping noses, bottoms, tears constantly. I get that some are trying to make the best of the staying at home with kids gig, trying to convince the world that they're happy, fulfilled, but some go further, trying to shout out that they LOVE it. I'm sure there are some that genuinely do love it and thrive in that environment, but, they generally aren't the ones posting all over facebook every 5 minutes.

I know there is a de-friend button on FB, I've hovered over it more than once when I see these posts, but don't hit it. I try to think back to when these parents and I were friends who saw each other regularly and liked each other. I care that they are happy and their kids are healthy and doing well, but, it's sometimes overload for me.
I know that I'm probably in the minority about this, yes, I'm probably bitter and if things were different maybe I would be doing the same. Although, I have to admit, if Tom didn't have any issues, I would probably have gone back to work by now, with the luxury of a childcare facility or private school for him, so I wouldn't have been posting on FB too much at all.

Parenting is very competitive, we all know that and in some ways, being on a different scale sometimes helps, not that we don't expect much of Tom, but that we don't have as much pressure to keep up with the Jones', or whoever. I want Tom to be a kid, to have fun, to find things he loves doing and if he grows up and wants to use his college fund for floristry, I'm perfectly happy with that, so long as he does it to the best of his ability and genuinely loves it.

I should also finish this up by saying that not all parents are like this, many are not and I'm thankful that I have quite a few friends who are not show-offs. Even though they have typical kids, they celebrate Tom's achievements with us and for this we are very happy and we value them immensely.
I don't expect many people to agree with me on my opinion, which is why I don't put these things as a status update on FB, but instead as a blog post, which anyone and everyone can ignore, but at least I get to say my piece, which makes me feel better.

Rant over.

Confusion

2011-07-24T22:27:00.000-07:00

So, I'm a little confused. Sometimes I don't feel like I'm 'getting it', that I didn't get the memo. It wouldn't surprise me, these days I'm so absorbed in the Tomster I barely come up for a look at the world.
Firstly, I think I'm one of the few people I know with only one child. Several of my friends now have 4 children. I'm thrilled for them, but even the thought of being a parent of 4 children stresses me out. Right now even the thought of 2 does that. I think we're destined to be parents to an only child. We didn't start out that way, we always said 'let's see' or 'never say never', and whilst I still agree with that stance, it's looking more and more unlikely that we will give Tom a sibling.
Honestly, I'm terrified that if we had another child, that child would also have problems and the likelihood increases as I get older. I know plenty of people who only have one child with ASD, but I know plenty more who have more than one special needs child. I don't think I could do another one. I would be completely paranoid for the whole of the pregnancy and for the first 3 years of that child's life.
I really am happy for those people who have 4 kids, or 3, or even 2, but as much as I'm honestly jealous that some people have multiple kids, with none of them having so much as a slight problem, if we had another child with issues, I don't think I could take it. To those of you out there with more than one special needs kids, I'm in awe of you, but I couldn't do it.
I also wonder if there are people out there who enjoy being pregnant. I didn't, hated it in fact. I retained water all over the place, never felt comfortable in my own skin and particularly resented the weeks 14-20 morning sickness. Just when I thought I was free and clear without as much as a heave, there it came.
And childbirth? People say you forget it, that the pain of it fades with time. Not for me. Thank goodness Tom was early. Maybe he knew that if he went full term that I'd have more than a panic attack. I have no idea how people do it over and over. Again. I shudder to think of it.
I wonder if I'm incompetent or selfish. Perhaps I'm both.

The other thing that's making me feel left behind is my lack of career. I'm really floundering on this one. One minute I'm happy to do volunteer work, then I feel like I should be contributing to our financial security. The problem with most of this is Tom.
I've spent over a month this summer so far, and another few weeks to come, of driving him around to various appointments. We have ABA 3 times per week (30 mins away), skating once a week (20 mins), speech and OT twice a week, swimming 4 times per week for the past and coming weeks. Normally we have school 4 times, ABA twice where I drive, 4 times at home, speech and OT twice, we will have skating once, swimming needs to go back into that at least weekly too. This week we have 2 lab appointments too. Now add in that I really need to find both Tom and myself a dentist, plus whatever else I've forgotten and I'm beat. My entire life is devoted to being somewhere at some time, until I need to be somewhere else at another time and so on. How could I possibly go back to work with a life that's so manic.
Even if I loved my previous career (which sadly I didn't, hence why I don't fight to go back to work too much), I couldn't make it work without a full-time nanny. I'd really like a little contract gig I could do when Tom's at school, but I honestly wouldn't know where to start in finding one.
This was all compounded this week when my CAM magazine came. I always have mixed feelings getting alumni magazines.
My ones from Leeds are less high brow, they tend to be full of things the university is doing, changes to campus, pictures that bring back distant memories.
The Cambridge ones make me cringe. My college one always has sections devoted to what amazing things previous and current students are doing, which never helps my self-esteem, since for the past 4 or so years I have had nothing to put in the update sheet they send out with it. Nothing.
The CAM one took the biscuit though. It has a section in it this time on recommended summer reading from various people who are either professors or famous people on British TV and the likes. I can honestly say I hadn't heard of any of the books they were suggesting. None of them. I have to say too though, that they all sounded really pretentious. I don't think I would want to read any of them. I use my reading hobby to read books that entertain me, without me having to think too hard. Right now I'm reading book one of the Game of Thrones series, and I'm quite enjoying it, aside from the usual confusion as to who all the supporting characters are - I had the same problem with Lord of the Rings and those bloody hobbits Merry and Pippin. I still can't remember which is which. Anyway, basically, has my obsession with all things related to Tom and autism killed off any brain cells that were previously used on this stuff, or did I just never know any of it. I suspect the latter. Perhaps all my fellow students really were that far ahead of me in terms of interest and intellect. With so much of my time spent reading papers on mitochondrial problems, toxic release sites, microglia activation, and so on, I need some fluff to read, not something I have to think about so I can make verbose statements, if I were capable of making them.

So, a confusing time. Of course it helps when you have a day like today, where Tom played with some friends, Jeff and I had adult company for dinner and just for a few hours everything felt calm.

Roll on the next few weeks then back to school for Tom, although he's going in the afternoon this year, so we're all change on the schedule again and add in the search for his new elementary school for next year, assuming we're staying in Colorado, which I sincerely hope we are...

Moan over.

DAN Doc Update and Swimming Lessons...

2011-07-21T20:20:00.000-07:00

In my wisdom (madness) I decided to sign up Tom for swimming lessons during some of his summer break from school. Tom's taken private lessons previously, but when his instructor went on maternity leave, we decided to have a little break from them. The thing that bothers me about Tom, and I guess all kids with ASD and special needs, is that he always needs one-on-one attention for things, which of course comes at a premium. The cost at the Y wasn't horrific, $65 for 4 30-minute lessons, but, after a while, it gets old having to pay that, especially when you look at the cost of their regular swim classes - $22 for 8 lessons in a group of 6. So, I figured we would give it a try and if it was a complete disaster, at least $22 isn't too much to walk away from. So, Tom's had swimming lessons every morning this week (M-Th) and the same to come next week. Needless to say, he's struggled with sitting still and waiting at the wall, and the Y have been great and added a helper to his class to help him follow what the other kids are doing. Sad that he needs that, but I'm really happy that they're trying to accommodate him. Both the instructor and helper are great with him and I'm actually able to see that he did achieve something in his private lessons - he desperately wants to just swim and wants nothing to do with the kickboard. Typical.

He's loved this week, more so since I've also been working out afterwards and he's gone to Childwatch there for a few minutes whilst I try and burn off some calories, which also happens to have a bouncy castle. It's been a great bribe to try and keep him focussed during his swimming lesson and he's had the time of his life. The Childwatch experience has moved leaps and bounds since last year, when I would pick him up and he'd be in time out. I did worry the first day when I arrived to collect him and he was sat against the wall. It turned out that the lurch in my stomach wasn't justified - he was waiting his turn for said bouncy castle. So, everytime I have some rotten experience doing something with him, I'm reminded about how far he has come and how far he can go. So, that's good.

I also had a follow-up with Tom's doc yesterday morning. It was a quick one because he was running late, which I have to say irritated me a little, since we were the first patients. I guess it's a doctor thing, they all just run late.
So, updates from this appt, since we haven't been able to get all the labs run from last time. We will get those run in the next few weeks, including an airborne allergy panel, re-run food allergies, we're going to check lactate and pyruvate for mitochondrial markers and also check the MTHFR gene, to see if Tom, like a lot of kids on the spectrum has a folate metabolism problem.

He also recommended that we re-try GABA, since Tom is still very hyperactive and I'm also leaning towards him having auditory processing problems. I have a feeling that Tom doesn't filter sound well. I think background noise is loud for him, hence why he isn't startled by loud noises, since everything he hears is loud, but also, why he does better in quiet environments in terms of following directions and responding to verbal questions. He also does appear to have sensitive hearing. I remember taking him for stroller walks as a 18 month old and humming tunes, which he would continue when I stopped. I could barely hear the tunes myself, but he had no problem, even from a stroller. Apparently GABA has effects on auditory processing, so we're going to re-administer and keep increasing until we notice some effect... We'll also look into AIT I think to see if Tom really does have a problem with this as we suspect.

I did mention Tom's yeast issue, which seems to have calmed back down, but, if it flares again, we can go back on nystatin. I'm trying to manage with water kefir and the usual GSE, MCT oil and Candex, since I'd rather not experience the tummy issues that go along with nystatin again if I can help it, even though I have to say, it works, and Tom is always much calmer when he's on it.

We are also going to continue with chelation because Tom continues to excrete both mercury and lead and maybe when we see those levels go down rather than up each time we challenge, it'll be time to back away from it.

So, that's the update for now! Looking forward to a swimming free day tomorrow and a relatively early night tonight. Even on a swim free day tomorrow we have ABA at 8am (the other side of town), potentially a pig roast with Jeff's group at USAFA, then speech and OT. Oh for a quiet day...

Why I Keep Bothering People on Facebook with PopVox Postings...

2011-07-14T13:39:00.000-07:00

So, lately I've been posting on FB a PopVox page. It relates to a bill that has been drafted and is currently sitting at a committee, and unless we all band together, it won't go any further. Here's the scoop on the current problem and what the bill will address -

1 - ABA therapy is currently provided to kids with ASD in the military via a special program, called ECHO. To enroll in ECHO, you must be enrolled in EMFP (Exceptional Family Member Program).

2 - ECHO is only available to Active Duty Troops and AGR (Active Guard Reserve), not to activated reserve members, nor to retiree family members, so, once someone retires (remember you must have at least 20 years service to retire), the ABA provision goes away.

3 - ECHO has a dollar per year cap of $36,000, regardless of the amount of ABA a doctor recommends. That pays for approx 12-14 hrs per week of ABA, but keep in mind here that the AAP (American Academy of Pediatricians) recommends at least 25 hrs per week for a child with autism.

4 - ECHO defines ABA as a special education benefit. Do you know of any educational program that needs a doctor's prescription? Me either. By requiring a doctor's signature, the treatment is clearly medical.

5 - ABA is proven effective in treating autism. It is pretty much the only evidence-based therapy that doctors recommend. It works. It reduces behaviours and improves a child's outcome.

6 - The earlier intervention is started, the better the result.

So, there you have it. Now this is what the bill will do -

a - It will move ABA therapy back under the Tricare basic program, so, with a doctor's recommendation, it will be provided to a child in the same way that speech and occupational therapy is.

b - It will be available to those who qualify for Tricare basic, including activated troops, active duty and retiree families.

c - It will remove the dollar cap per year, so the treatment level that is recommended by the doctor is what will be provided, subject to availability.

d - Children do not lose their ABA provision when their parent retires from the military.

e - There will no longer be 2 additional programs into which the parents have to apply and be accepted, or even know about (which is a problem for many - the medical groups are clueless about how to get families access to these programs), thus removing a huge barrier to care.

Plus, here are reasons why I support this bill -

- A child does not lose their autism diagnosis when a military member retires, they shouldn't lose their ABA coverage either.

- Can you think of another disease or disorder that we ignore a doctor's prescribed level of treatment? Can you imagine the stink if Johnnie, diagnosed with cancer, were to only receive half of their chemotherapy drugs because Tricare said so? Can you imagine if ten-ton Terry who has eaten crap his entire life and refuses to exercise or diet were refused his myriad of drugs keeping him alive, even though nature would've dictated a heart attack years ago? Exactly. Why is it ok to require a doctor's prescription for a treatment, only to ignore how much of that treatment is recommended? This happens everyday to kids with autism in the military and elsewhere.

- I get sick of hearing 'you guys in the military have great benefits - you shouldn't complain'. I see this all the time on chat boards and new article comments. Well, if you think the benefits are so awesome, why don't you join? Just because we get some benefits, it doesn't mean that we get what our children need. This goes right along with the government talking about the military civilian pay gap. Um, excuse me, govt peeps, you're comparing apples and oranges.
Last time I checked, no federal civilian employee can be put in prison for refusing to deploy to a desert crap hole for 6 months or longer, where they might miss the birth of a child and the likes, oh, and get shot at and have IEDs everywhere and rockets launched into their camps. It's not even a close comparison. I think for the risk many troops take, and the threat of deployments, separations and bodily harm, the military should earn more. Much more. They should also not have to worry about the health of their children whilst in said desert crap hole. Their children and family members should receive any and all healthcare they need, as recommended by their doctor, not by Tricare.
I think Americans have lost touch with their military. It's all too easy to allow others to do this job, but still moan they get something you don't. Yeah, a lot of them get PTSD. How about that.

- 1 in 88 military kids have autism. That's more than the general population. I wonder why that is? Could military service be linked to ASDs? Seems to me, if someone doesn't like the cost of treating those kids, they should figure out why the numbers are higher?

- ABA WORKS. It helps those children that receive it enormously. For us it fills in the gaps of development Tom has missed naturally and instead needs to be taught. It reduces problem behaviours, which helps the kids in school and social settings. It can enable kids to need lower supports beyond childhood. It can enable children to grow into independent adults. Do we not want / need every member of our society to be working and earning money, paying taxes and thus not relying on welfare? How much space is going to be needed for group homes and institutions for these kids as adults? We are not asking for unproven and experimental treatments to be covered. ABA is proven effective.

- As for cost - do people realize that with over 1 percent of children with ASDs and 2 percent of boys how quickly that could bankrupt this country if none of them are ever able to work or live independently? It is much cheaper to put the full therapy into these kids now, whilst they're young, then, in the future they will need fewer supports in school (saves school money), fewer years of half-measure therapy (saves therapy money) and they can actually have a chance to be contributing citizens.

- It's the right thing to do. Look after those whose parent/s put themselves in harm's way. Do right by them. Be humane and allow these children to have a chance at their dreams too.

- Understand that the autism numbers are not going down, they are going up. Consistently. We can fight this now for those who come after us too. It's not just about the military long-term, it's about civilian children too. The private insurance companies are starting to follow the military lead and provide ABA coverage in line with Tricare, which, although isn't perfect, is better than nothing. But, it's still not where it should be. Let's lead by example.

The PopVox link is here - https://www.popvox.com/bills/us/112/hr2288/report#nation

So far it has only 93 votes. This is directly linked to the govtrack website, so reps can see what public feeling is.
I have 200 friends on facebook, probably over half of them are US voters. Can you show your support of us as friends and our son by voting to support this? Comment if you like, but, even if you just vote, it would help. If you really want to help, write to your congressperson and ask them to co-sponsor HR 2288.

I'm sure I've probably lost most people who started reading this by now, but, if you did make it to the end of my little rant, I appreciate it.

Finally - a Sports Program!

2011-07-11T13:42:00.000-07:00

So, how about the 2 posts in 2 days thing? Go me.
Anyway, wanted to post today to give a shout out to the C3 Therapeutic Skating program in Co Springs. Tom had his first lesson today with them and LOVED it. We've tried skating before at Sertich, but Tom was always so distracted by the video game arcade there that he had trouble attending. Well, the Honnen Ice Arena at Colorado College where the program is based doesn't have one. That was a good omen from the start.
The program consists of a 20 minute lesson, one on one, then extra practice time with a helper if kiddo wants it and they use the Therapeutic Skating Program from US Figure Skating. Normally we would have trouble keeping Tom on the ice for 5 minutes. Today he lasted his full 20 minute lesson and did extra time and even then he didn't want to stop.
I think we've found something we can do that Tom loves and I really like the program. The people were wonderful with him. Looking forward to the next 2 weeks and hoping they continue beyond!
Oh - and I forgot - he earned his first 2 badges today as well!

Montana Summer Break

2011-07-10T20:21:00.000-07:00

It's a tough life being Ted Turner - I wish he could spare a couple of acres...

It really is a treat being in Colorado, not just because we've had lovely weather lately, but because we can drive up to Montana.
We just got back from a week at our condo and it was such a lovely time. Jeff's mum came up with us as well, so Tom had extra grandma time and Jeff and I got some much needed time alone.
We had 2 hike attempts this trip, one to a recommended hike from Outside Bozeman, of which the access road to the trailhead was closed because of snow (there wasn't any) and another to Beehive Basin, which was still completely covered in snow. The first hike we just walked up the dirt road to the access, which was at least scenic and gave us about 6 miles of exercise. The second we completed, jumping over run-off created mini-rivers. Beehive Basin is supposed to have quite the wildflower display, but, since the whole area was under anything from 6 to 36 inches of snow, we didn't get to see them. Nice hike again though.

During the week we went to a garnet mine and Tom had his first attempt at fishing. We did find some garnets, but, unlike the sapphire mine that tell you if you have anything worth cutting, this place didn't. It was closer at least and perhaps next time we go to the sapphire place, we can take the garnets along.

Tom washing some rocks at the mine

Tom's fishing was interesting. Jeff took him to one of the local ponds with his brand new 'Cars' "children's fishing pole" as Tom kept telling us. He tried for a short while, then kept going in the water, then threw his shoes in the water too. He had fun, but it's a probably a good thing Jeff is so grey so we don't see how many extras he now has after that 15 minutes...

Tom's first fishing attempt

We also took a day fishing at a local spring creek that Jeff has fished at before. Needless to say I didn't catch anything. Let's just say that my technique is a little sub-par and for wily, smart fish like they have here, I could have offered them a steak dinner and they wouldn't have been interested. It's an odd thing to float a fly right over three fishes' noses and them to just watch it go by as if they were watching a tennis game. If they had fingers I think they would have flipped me off. Outsmarted by fish. Completely.

Our weather for the week was beautiful up there, but even better, very rainy in Colorado, which is perfect for our crappy looking lawn (since we've now de-thatched it and it looks a little bald) and my veggie patch.

Now for us is to prepare for the next few weeks of no preschool. Kill. Me. Now.
Ok, maybe not, but I think I'm going to have to work harder to try and entertain Tom and keep him on track. We have his first therapeutic skating lesson tomorrow, so hopefully he enjoys himself. In some ways having nothing scheduled is a nice change, in others though it's not as good - Tom does best with lots of attention and activities and with just muggins to provide them, I have a feeling it's going to be a month of early nights...

Who Doesn't Love a Pay Rise?

2011-06-30T20:15:00.000-07:00

Stockwells post-promotion

So, today, my lovely hubby was promoted to Lt Col. Our good friend Char came out to officiate, and Jeff's parents were also with us for the event. Jeff was promoted today at the place he started his AF career, the Air Force Academy. We had a lucky break in the oddball Colorado weather and Tom interruptions aside, all went smoothly.

Jeff and Char

Tom hijacking Jeff's speech

We are all very proud of you Jeff and we can't wait to start spending the pay rise. OK, well, anyone that knows us knows that we're just not that way inclined, so it'll just mean we save more, probably. It's good to *think* about spending it anyway.

Tom had a hard time today, he had trouble sitting for longer than 10 seconds and in the bath prior to the ceremony, I think I saw why - the yeast is back, red butt ring and dots on his face and all. So, we're prepared for 2 days or so of big GSE and Candex-induced die-off before lovely Tom emerges once again. So, that part was tough, luckily, some good friends helped us out with him.
He did have a couple of cutie moments though where he 'shussed' Jeff during his speech, joined in with Char during his talking at the podium and made quite the entrance when told there was a present for him, 'ta-dah' and all... Yes, he's a pain in the arse at events like this, but, we got through it, and Tom loved his pressie, some "Cars" cars. He hasn't seen Cars 2 yet, but is hooked on the first one. The second will come at a matinee showing one day when preschool is done and we're looking to kill some time next month.

The highlight of the day for Tom - his present.

In this pic Tom is telling everyone that Jeff has just won the Piston Cup..

In other news, Tom finished up his summer school program today and he isn't doing preschool in July. Instead we're going to do swimming and skating lessons, as well as the usual ABA, ST, OT and I'm going to do some more work at home with him, as well as some crafts. Well, maybe on the crafts, but, at least I'll try and get the paints out for him.

Also, I picked up Tom's latest challenge test results today. Mercury and Lead up again. Good, but I want the stockpiles to go down... Also, Barium still high. No idea where that is coming from, he's never had any kind of imaging done. Weird.
Anyway, that's it for today.

AO and Chicago

2011-06-21T12:43:00.000-07:00

I've already posted a little bit about Chicago in the mention of the Tomster's cycling prowess, but I wanted to add a little info on why we were in Chicago in the first place.
Every year, the week prior to Memorial Day, AutismOne is held. It's a huge autism conference drawing attendees from all over the world and it covers almost every topic surrounding autism that you can imagine.
Got sensory problems? They have talks for that.
Diet and food problems? They have demonstrations and an entire day on that.
School problems? Yep - there's a legal track too.
Want to know more about the biological aspect of autism? There are more talks on this than you can possibly get to.
Seriously - you need a clone. But wait! No you don't, because they tape the sessions and they're online, so any you miss, you can just catch up with online.
It's an amazing opportunity to meet new people, catch up with friends and actually talk to experts in the field, whichever field it is you are interested in.
I've heard more than one person refer to the people they meet at AO as their 'autism family'. It really does feel like that. For a few days you're not the person with the kiddo that's different or difficult, you're with friends, who understand, offer tips, ask for tips and share stories. The speakers are so accessible. I got to chat about mitochondrial problems with Dr Rossignol and GI problems with Dr Krigsman.
This year I wanted to learn more about sensory processing and went to talks on self-regulation and auditory processing.
I also wanted to learn more about mitochondrial problems and other biological aspects and also got to do that.
The Age of Autism team also do a fantastic annual roundtable at AO and this year they featured Ginger Taylor, and launched The Canary Party. Sick and tired of being sick and tired? This is the party for you. In all seriousness though, I often wonder why no-one questions how sick we have all become. It seems the norm for people to be completely dependent on prescription medications these days. It's not normal. It's not right. People seem to think that Big Pharma are helping us all with these wonder drugs, but, remember, they are not non-profit organizations. They make insane amounts of money out of us being sick and it is in their best interests for people to be chronically sick and taking medications for as long as possible. Never forget that.
I also learned a trick at AO that ties in nicely with the above comment. Peppermint oil does wonders for headaches. I tend to get stress headaches from time to time and it is miraculous stuff. Go to the store and get yourself some organic peppermint essential oil now! You rub a small amount into the headache area, then put the rest of a small amount on the back of your neck. Amazing.
I should also add in that I was the silent auction coordinator for AO this year. We raised a good chunk of money for the conference, which is fantastic, and we had some amazing donations, and next year we are going for more! If you're reading this and you want to help families help their children, please consider donating to AO. Unlike certain other organizations with a blue puzzle piece for a logo, money and goods to AO directly helps families. No-one at AO takes a salary, it's volunteer run. So, if you would like to donate for next year's auction, email fundraising@autismone.org. There, that's my plug.

As I've already mentioned, whilst I'm at AO, Tom stays with his grandparents, and I might add, has an absolute blast. Tom's Uncle Tim also flew to Chicago to spend some time with him and they got up to all sorts.

Musings / Rants

2011-06-16T19:31:00.000-07:00

I considered doing a separate blog for posts like these, but, frankly, why? It would take extra effort and ultimately, it's my blog and my opinion. Most of the posts on here are about our life as a family, and whilst we try to not let Tom's autism be the dominant feature in our lives, sometimes, you just can't help it. It's hard work to raise a child with autism. It's harder still to fight to recover that child. Everyone has their own opinion on what the right approach is and it's not my place to comment on how someone chooses to parent their own child.
As you have probably gathered by now, we're a biomed family. We work on a basis that autism is an injury and if you heal the biological problems, then there is a chance of recovery.
Therapy is not going to help my son excrete the lead that was in his blood, nor is it going to correct his kreb's cycle. For those who can recover their child to a high level with just therapy, I say you're very lucky. I know that Tom will not recover with this approach.
Anyway, onto today's post. There was a little thing going around facebook today - http://www.stuartduncan.name/autism/what-to-say-and-not-say-to-a-parent-that-has-a-child-with-autism/.
Normally I don't like these kind of lists. I prefer the ones that have cutting comebacks for the stupid things that people say, without thinking, or just because they're mean gits. But, I think the thing that hit me is that people really do say these things. I can't believe some of them.
Here is the list, with some comments, for those who don't want to look at the link -

Your kid just needs proper discipline
On this one, I honestly think all children need (self)discipline, I do think kids are too coddled these days. I interpret the use of the word 'discipline' in this statement as a physical gesture. If that's not what was meant by the uninformed person who made the comment, then sorry, but, that's how I'm taking it. In general, I don't think hitting children achieves much. We've tried smacking Tom - it doesn't work. It's a hard thing to hear "nice hands mummy" from your child when you are trying to stop him from hitting peers at school because he can't communicate enough to ask them to get out of the way so he can get a toy. Discipline is one thing, but, it's more important to find a way to communicate with your child so that they understand the message you're giving them. ABA is all about breaking tasks down into understandable pieces, then reassembling. I think that if you want your child to respect you, you need to respect your child, but more importantly, understand them. Disciplining a child who doesn't understand what you're trying to communicate only generates frustration on both sides.

My kids would never get away with that
Sometimes, when you're raising a child with autism, you have to pick your battles. Is it more important that your child eats the right foods and a balanced diet, or more important that they completely feed themselves that meal? For us, we chose the first. I think my son will do better if he is eating nutritious food that I feed him every 3rd bite (otherwise we are stuck at the table for 2 hrs) than eating chicken nuggets by himself. As parents, we all choose the battles we want to fight, but this is honestly intensified for us. We were very easy going on toilet training. I didn't particularly care that Tom was 3.5 by the time he was completely trained. This is an amazing achievement given the fact that he didn't have a solid poop until he was 2, and, that he has autism.
Perhaps the hardest part of this point is that parenting is so competitive these days. I get so sick of hearing what other parents' kids are doing. Don't get me wrong, I'm happy that your child is doing so well, but, it hurts my feelings at the same time. It annoys me that parents put so much emphasis on what their child is doing - that it must be because they are perfect parents and you're obviously just shit at it because yours isn't doing that.
I don't care that you think your child is a genius by 2, chances are, they're not, or they are, but they could still end up an idiot as an adult. People always judge. I'm sorry my child is not talking as much as yours, or he is using up school funding, or occasionally he hits because he can't communicate as well, or, he might be too excitable for your liking and thus is a disruption in a classroom or a grocery store, or a doctor's office. These are kids and some of them genuinely can't help it. Maybe instead we could look beyond what the child is doing and try to have a little understanding that they may just not get social rules and norms and maybe the parents correct the child for hitting/spitting/chewing clothes/etc etc 50 times a day, according to their behavioural therapist (who costs $50 a hour and may not be covered by insurance) and it will still take 3-6 months to get the behaviour under control. Maybe we need to be nicer to each other. Maybe we should stop thinking we're all perfect.

What made your kid autistic? Was it something you did?
Now there's the million/billion/gazillion dollar question. If we knew the answer to that one, we could patent it and make as much money as Paul Offit. Maybe. I don't know a single autism parent that doesn't lose sleep over this. We all wish we knew what exactly caused our child's autism. There's a reason the autism 'logo' is a puzzle piece. No one knows. Even in the genetic causes, most of them are mutations. We are way beyond the days of refrigerator mothers. Even in cases of clear vaccine injury where the child later developed autism, there was some susceptibility, some underlying condition that made that child vulnerable, of which the parents weren't aware. I know one thing for sure - until real science is done (not the tobacco stuff), we won't know and we'll continue to be asked that stupid question. Of course, maybe one day a parent will come up with that answer and hopefully get a nobel prize at the same time. It might pay off some of the supplement and medical bills that insurance doesn't cover because autism is a psychiatric condition, not a medical one. Yeah, right.

You shouldn’t take your kid out if they’re just going to be like that.
My son can be a nightmare when out. He is a pain in the arse. He runs off, he doesn't stand nicely in line, he likes to play with the conveyor. He cannot walk by my side without me holding his hand because even if he doesn't run off, I worry about him doing so. But, I cannot stay in.
Firstly, I need to go grocery shopping. I need to take my kid to the doctor occasionally. I need to run errands sometimes when he doesn't have school or when he needs to be with me. It's not my choice, but sometimes it's necessary.
Secondly, he needs to be able to function in the world. He needs to experience the world, otherwise, how will he learn to walk in a car park and wait in line at the supermarket?
Thirdly, I would go nuts, especially when I have no school or therapy scheduled for him. I need to feel like I'm not alone in the world and I need my dose of life outside our house.
I have news for these perfect parents - all children misbehave. Shock. Horror. They do. Especially 3 and 4 and even 8 year olds. They must be suffering from either selective memory or early Alzheimers. I bet even these people threw the occasional tantrum as children.

Your kid doesn’t look autistic
Here's the big problem. Many kids with ASD don't 'look autistic' and because they look 'normal', people don't see the problems. To the untrained eye, Tom looks like he is just a hyperactive, stroppy preschooler. Then you see that he has trouble focussing on tasks, making eye contact and answering questions. He doesn't stim noticeably. He is verbal. But, he does have autism. It's not my fault that you're not experienced enough to notice his problems or that you're unfamiliar with the diagnostic criteria. In the same way that no-one knew Catherine Zeta Jones was bipolar, people can't tell that kids have autism. Sadly, autism is a hell of a lot more problematic to manage than bipolar.

Are you sure your kid is autistic?
Yes, the developmental pediatrician who knows the diagnostic criteria and evaluated him against it has confirmed this. Trust me, parents don't seek to label their child. No one wants their child to have autism. It stinks.

Why would you have more children if there’s a risk they could have autism too?
There's a risk for any child to have autism. There is a higher risk for siblings of children with autism to have autism. But, it's just that, a higher risk. Not a guarantee. I'm not a neurodiversity-believing kind of girl when it's referring to all autism as just variation, not with the medical issues that go along with these children, but, I believe that Tom will make his contribution to the world in some way. And all parents have that right to decide if they want more children. There are plenty of parents who have multiple children and only one of them has autism. There are those parents who have other special needs children, among typical siblings. Basically, it's up to us as parents to make decisions about our families.
There are plenty of stupid people that, in my opinion, shouldn't be breeding - no one asks this question of them. "You have one stupid child, and you're both stupid, why would you risk having another?".

Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
Wow - I can't believe anyone said this. A 'normal' life? Our life has been very busy, stressful and upsetting at times since we had Tom, but, we are parents and we love our child. We do everything to ensure he has the best life possible and for us, with Tom, that means, with us, as a family. Some parents do have to turn to these solutions with their children, but to imply that it be done out of selfishness for convenience is an insult to those who have had to make those decisions.

Sorry, I don’t really want my child to play with yours.
Right back at you. I don't want my loving, non-discriminating child to play with yours, because, if you're this bigoted, then your child will likely grow up to be an asshole too.

Your kid is defective
Yes, and your point is? My child can't help it, you, as an adult, can. Clearly the person who said this must be on the spectrum too, since they obviously have problems with empathy.

Your kid will grow out of it, right?
I wish. But, I'm spending hundreds of dollars a month in supplements and thousands a year in therapy to try and make it more likely. Maybe some kids do grow out of some of their issues. I'm hoping Tom grows out of his hyperactivity, but, ultimately, some of the problems with autism, a child cannot grow out of, just like children don't grow out of celiac disease, diabetes etc. They're autoimmune, just like it's looking like autism is...

Autism? That’s like Rain Man, right?
I hope. Then I can take Tom to Vegas and make a ton of money. Except that he probably isn't a savant like Rain Man was. Bugger.

It must be nice to get special funding or special help!
Sure - those IEP meetings are so much fun. Suing school districts that abuse children with ASD and who spend their federally allocated funds on general expenses is just a blast. Some of my friends have had to do this. It's more common than you realize. As for special help, um, not so much. It's just hassle and hard work. I don't want to know anything about special education law. I wish I didn't have to. Please, take my child's diagnosis for yours if you would like.

I hope my kids don’t end up like yours
Me too, at least from a medical standpoint. I work constantly to try and ensure that people are educated about risks, about warning signs, so that their kids don't end up like mine. But then again, Tom's not all just hard work. He's a loving, joyful wonderful soul and he makes the world a better place. Many parents would be lucky to have a lovely little cutie like the Tomster. At least autism isn't life-threatening. There are worse things to deal with. Autism, for us, has given us perspective. Yes, we have a long road ahead of us, but it could be worse. Much worse.

You need to watch your kids better
As do we all. At least my child says please and thank you, which, chances are, the person who made this comment's children do not. But they're still perfect of course. If he's not hitting anyone, causing a nuisance or a danger, honestly, I'm sometimes not all that bothered. But, as many parents of ASD kids know, sometimes you need eyes in the back of your head, and then some. They are escape artists, quick as lightning and sometimes you need to blink.

Maybe you’re just bad parents
Yep, maybe we are. Genetically defective maybe. Crap with discipline. Refrigerator mother and father. Yes. That's right. I'm getting tired of typing my way through this now.

But all children do that
That's right. No kids make eye contact. And many are still in diapers way after they start middle school. And the rocking, humming, spinning, stimming, that's all normal too. As are the constant ear infections, bowel problems, food allergies etc etc.
The sad thing is, people are normalizing to many of these things. Since when was it normal for so many children to be on medication for something, as kids? Something is seriously wrong people when you think this stuff is normal.

But your kid was so good for me
Lucky you. Back to the fact I'm a crap parent. Or you're a novelty.

Referring to your child with a nickname such as “rain man” or “stimmer”
Nice. How about we refer to you as 'asshole'? Seems appropriate. If I want to call my kid that, it's my choice, but if you do it, I'll go postal.

Anyway, so I've yapped on long enough, but I will leave you with this.
Raising a child with autism is hard work - back-breaking, wrinkle and grey hair-causing hard work. It wasn't something we did, nor a punishment the gods are handing out for something, it was just bad luck. Support us. Help us heal our children. Help us help them make friends. Be friends to us. I'm sorry if all I talk about is autism, pollution, food and allergies, lab tests and how stupid most doctors are. Console yourself with the fact that your life isn't swamped with this crap, your children are child-geniuses and you're the perfect parent.
Don't judge the parent in the supermarket who is trying to herd her hellion-appearing child. Maybe the kid has something else going on. It's more common than you think.

Mission Accomplished!

2011-06-08T18:27:00.000-07:00

So, Tom and I recently spent 10 days in Chicago for Autism One (I'll do a write up for that one when I get around to it!). We came in a little early to spend time with the Stockwells in Palatine and then I headed off to the Westin for a few days and Tom hung out with his grandparents.
Jeff decided to set his parents a mission for this trip - teach Tom to ride a bike. Well, needless to say with the Tomster, things are never predictable. It could go either way. In this case, it took him a ride to the park (about 50 yds) and back to accomplish this goal. Tom can now ride a bicycle, with training wheels of course.
Today, Jeff finished off the training - Tom can now use his bike (rather than his shoes) to slow himself down and stop.
Amazing. That's the only word I have for it. Tom is doing so well. We even had a great behaviour day today, despite no school or therapy and a trip to the commisery and BX, where he earned himself a new lego toy (rules = under $10). It was a castle, and since he's been all about Tom Thumb and Thumbelina on the free Comcast movies on demand, I agreed. He's had an afternoon of imaginative play and for the first time named something. His dragon (that came with the set) is called 'Flicker'. I'm sure it's a name he's heard somewhere, but that he came out with it by himself, I was pretty impressed.
Biomed works. Our son is evidence of it. He has a messed up system, but it's recovering and noticeably.
I think I might just finish off the bottle of wine tonight and enjoy what's been a wonderful day. Even the unpredictable Colorado weather has been co-operating lately.

DAN Doc Update

2011-05-15T08:47:00.000-07:00

I'm finally getting around to posting about Tom's DAN! doc appt.
The appt was a little hectic because Tom was his usual hyperactive self and the doc was running a little late. But, we got through it.
Tom's doc is pleased with how his labs and stuff are looking and was very interested in the levels that appear to be normalizing in his OAT test, particularly the pantothenic acid levels. He was also surprised by the mandelic acid level, which has doubled. He asked if Tom was bottle-fed, which he was, and mentioned that maybe he is finally peeing out some of those derivatives...
We've decided to keep Tom off the nystatin for now, because even though his fungal markers are up, so was his beneficial bacteria one and since the water kefir also includes yeasts, maybe the yeast levels we're seeing aren't from the nasty one, which would also explain why we haven't seen the typical behavior we normally see with a yeast overgrowth.

We are going to increase both his acetyl-l-carnitine, CoQ10 and Vit C though, based on the OAT test.
We are also going to continue with chelation, and will do another challenge test soon.
Add to this re-testing his food allergies. His doc agrees that 1.5 years is reasonable time that we can now re-look at his food allergies and intolerances to see if his immune system has calmed down enough for him to not react to as many foods.
We're also going to run a region airborne allergy panel to see if he has any other problems, just so we know.

We're a week away from leaving for Autism One. Tom will have a week with his grandparents and will no doubt enjoy himself immensely. From the Weds this year I'm staying at the hotel and having a break, to top up with the latest, as well as try and get as much information on mitochondrial dysfunction and Kreb's cycle problems, hopefully make a bunch of money for AO via the auction and catch up with friends. Can't wait!

His latest fascination is with cameras. He has figured out how to work mine and keeps stealing it to take pictures of anything and everything. Tom's also still talking all the time, to the point where we wish he would be quiet and his latest little nuggets are "Come onnnn", "You're mean!" as well as him petting me whilst saying "pleeease mum, pleease, I wuv you" for something he wants (usually the computer). Hmm.

Wasssupp!

2011-05-04T18:38:00.000-07:00

Well look at that, 2 posts in one day.
Tom's been playing on youtube and in the process, has discovered the Budweiser adverts of several years back. You remember them, like it or not. Some jackass decided that it would be funny to do the commercials with trains. Bad enough that I have a mimicker. Bad that I have a kid that likes trains. Super bad that said child sees combination video and it has now become his party trick.

Lab Test Update

2011-05-04T11:44:00.000-07:00

So, we got Tom's latest lab results back. As far as the CBC went, we now have slightly low white cell and neutrophil counts and RBC, hemoglobin and hematocrit are still high, but lower than they were, so, nothing majorly concerning.
His Vit D level has also improved a good amount, from 36.8 in Oct, to 60.1 in April. That's definitely good news.

Now, on to the OAT (Organic Acids Test). This one is a little more detailed, so I'll just give the highlights. Yeast markers of all kinds seem to be up, aside from arabinose, which has come down slightly. Still 190, which is well beyond a normal range of under 50, but it did come down a bit from the 200s. The interesting thing with the yeast though is we haven't seen the usual yeasty behaviour. We're not seeing head dragging or the obscenely hyperactive behaviour, beyond what we normally see. We are seeing some night waking, but not the type where Tom has gas or tummy pain that has woken him up.

Many of Tom's levels are normalizing, which is great news. We have a couple of levels that are elevated (suberic and subacic), but could be explained by the MCT oil Tom takes.

One big surprise drop was pantothenic acid. It's always been very high. I think we might have worked out why it's now in the normal range for this OAT.
Late last year we started Tom on acetyl-l-carnitine and continued his CoQ10 for issues potentially with his Kreb's Cycle. We've seen a huge speech and cognitive jump since then. I was reading a microbiology book last night on metabolism in cells and saw that pantothenic acid is a factor in the Kreb's cycle also. So, wondering if before, his cycle wasn't working properly and therefore wasn't getting to the point of using the pantothenic acid, so he just stored huge amounts of it. Now we have potentially fixed this issue by the mito supplements, he is using it and the levels have gone down. Logical argument?

Now add in another interesting level from this OAT test - very high mandelic acid. It's a bizarre level that only tends to show in kids with PKU, which we are pretty sure that Tom doesn't have, or with styrene exposure, which Tom hasn't had. Or has he? His doctor today asked if he was bottle fed, which he was. He said that maybe now Tom's Kreb's cycle is working properly, sufficient ATP is being generated to start flushing some of this stuff out, that might have been stored in fatty tissues (including the brain). Maybe. Again, sounds reasonable.

I'll post again in the next couple of days on how Tom's doc appt went today and what our next steps are, but, there were many promising signs today.

Oops...

2011-04-30T16:12:00.000-07:00

Here's my favourite little pic of Tom at the moment - taken on royal wedding day. We were going for a little drummer boy/military look, but I think we got a cross between Chris Martin and the Beatles. Either way, he certainly looks his half-British heritage on a very British day.

Looks like I made it almost a month without posting. Well, in our defence we have been a little busy. Between sorting out insurance claims and fixing things, we've had our hands full.

There isn't an awful lot to talk about wrt Tom. He continues to make great progress with his speech and behaviour and his speech pathologist is going to rewrite his treatment plan again before she leaves in May, since she's PCSing with her military husband and is having a baby. We'll be sorry to see her go. He's made solid progress with speech since we started therapy and it's very encouraging to see him meeting goals.
As for OT, he is making very slow progress. His sensory seeking behaviour continues to be problematic, and his fine motor control still needs work, although, again, is improving. We have been having him practice outside of his therapy times with dry erase markers and the Kumon workbooks (the Uppercase Letters one). It does seem to be helping though.
After switching out tutors at ABA because his old tutor got a new position, he is finally making progress again. He is making slow progress on some programs and we have added a fine motor one to help him in this area, but with others (categories for example), he is mastering quickly. It seems like many of his programs right now deal with fine motor, writing letters and his name, as well as sight reading, which I thought he might make quicker progress at than he has.
On the biological side, we have re-run his OAT test and CBC and Vit D levels to recheck. Hopefully his Vit D is in the normal range now and his OAT levels have started to normalize. That would be wonderful. We should get results next week on that front.

Also, slightly on the biological side, I've started 'brewing' water kefir. It's basically a bunch of bugs or 'grains' added to sugar water. The bugs eat the sugar and multiply, but also add various probiotics into the water. So, we've been giving Tom this with his juice, to try and increase his probiotic intake. Of course, I could just be feeding anything in his gut that shouldn't be there, but I thought it was worth a try.

We also had a visit from a friend of mine from Cambridge this past week and it was lovely to see him! It was good to chat to someone who, like me, has spent a lot of time towards a specific career, only to decide that he's really not interested in doing it as a full time position.
It made me wonder how many people out there do that - study and work in a field you just don't want to do anymore, but feel stuck because of expectations, mostly of others.
I am very fortunate that we can afford for me to stay home with Tom right now, since otherwise we would need a full-time nanny to manage all of his appts, also that I can retrain to do something I like.

Oh, and the weather in April in Colorado stinks. I'm sure some like it. Not me. I can't get to grips with 70s one day and 30s and snow the next. Don't get me wrong, I like snow, but, not in April. It seems like it should be starting to consistently warm up by this point. I've already lost 3 zucchini plants I prematurely planted out. My fault completely, but still. At least the peas are still alive.

Parasites

2011-03-31T11:56:00.000-07:00

For once, I'm not referring to any kind of biological parasite, well, ok, I suppose I am, but this particular variety is a self-contained, walking, talking complete waste of carbon.
Last week was spring break. We were looking forward to a week of relaxation, skiing, fun so left on Saturday morning. Sunday morning we received a call from USAA alerting us to fraudulent activity on a debit card of ours. Sunday evening brought a phone call from the police, to tell us that they had apprehended a shoplifter who, when searched, was carrying Jeff's social security card. At this point we knew someone had been inside the house and the police officer proceeded to come to the house and confirm the break in.
Monday consisted of a very long drive back to Colorado. The burglars had pretty much taken anything electronic from the house, as well as some jewelry (luckily not much since I don't own much), Jeff's Weapons School watch, his guns and his car, from the garage. They also stole debit cards that they used at Walmart (who knew that you can use a debit card there for up to $500 without showing ID and without needing a PIN?). And the kicker - they took Jeff's ABU cap with his rank and his blues shoulder rank. Why? Have these worthless individuals absolutely zero respect for the military that protects their rights?
So, our Monday and Tuesday sucked. We have been dealing with insurance, police reports, locking down our finances (since they also stole a hard drive) and changing locks and beefing up security since.
Roll on Wednesday when Jeff calls me into the office - his car was now sat on our driveway, with very little damage and the keys on the front seat.
Needless to say the police were a little confused by this, as were we.

So, roll onto today when I got a phone call from the police. They have arrested 2 men, one of which was the shoplifter originally picked up, who had been identified on security footage from Walmart. They have also seemingly recovered a bunch of our stuff at a raid at the house of these men. I call them men, but I really mean disgusting, lazy, worthless, criminals who I would like to strangle so hard their eyes pop out.
I hope all kinds of unfortunate things happen to them in prison. The sad thing is, not only do people like this think they have the right to break into people's homes and steal things those people have worked for, but now we have the pleasure of paying to feed them.
At least, hopefully, they're not going back on the street for a long time. Our burglary is a Class 3 felony, carrying up to 20 years in prison. Hopefully the judge in this case will 'award' them the maximum.

Big One Beds - Part Deux and Parent Teacher Conference #1

2011-03-17T07:50:00.000-07:00

So, we finally have Tom's new big one bed. 'Just like Goldilocks', it's 'just right' according to the Tomster.
It was pretty funny yesterday when it turned up and we started moving out his old toddler bed/crib and emptying his headboard, which has been used as a bookshelf in the 'train room', aka the office/playroom. Tom just started giggling, he just didn't know what to make of it, although he was upset for a minute with us moving his 'library' out of the train room.

So, after Jeff having to return the bed frame we got from Costco because it wasn't square, mid assembly, we finally have Tom in a real bed. He was so excited about it. Now I know why the Pottery Barn one was $60 and this one was $35. Hmm.
We're also going to gradually transition him to more of a big boy routine for bed. Now we're going to give him 10 minutes of reading time, after story time, by himself. I expect he will be a pain for quite a while with this, but hoping that a timer might help.

Also last night was my first ever parent teacher conference with Tom's teacher. She went through the progress report for 3-4 yr olds, that normally she doesn't do with IEP kids, because, apparently, it can just upset parents to see how much their children are not doing. But, good news is that most of the items Tom does 'regularly' and those he doesn't do regularly, he does 'sometimes'. So, from that standpoint, Tom is on par for grade level with his typical peers. We talked about Tom's strengths, progress and problems in a class.
I always worry about my tinker getting bullied when he's older, if personality differences will make him an outsider. His teacher doesn't think this will happen, if signs now are any indication. She said he's a great advocate for himself, plays with most of the kids in the class, and she never has any problems with the other kids in relations with Tom. They are happy to play with him, sit with him, or anything else. So, that's good. You know you're in trouble when your kid is the kid no-one wants to play or sit with.
She also said that hyperactivity remains his biggest problem, but not in an ADHD way. Apparently he doesn't seem to have attention deficiency really at all, he pays attention well during circle time, in contrast to some typical peers even. In fact she said that although his primary 'disability' is autism, she said that in class, his autism is a minor concern, with hyperactivity more of a problem. Hopefully, as he gets older that will decrease, or we will find ways to manage it.
So, it was very positive. She doesn't see a problem with him transitioning to kindergarten with minimal support next year, especially given his amazing progress this year.
Yay! Got to love positive news. I left his preschool with such a good feeling last night.

Happy 4th, Tom Stockwell!

2011-03-06T19:12:00.000-08:00

Another year, another birthday in another location! We're hoping we have a few more birthdays in Colorado though.
So, the Tomster is now 4! This year his grandma and grandpa are in town to share his birthday with him and so he's been thoroughly spoiled, both in gifts and attention. He's quite the Candyland whiz and I don't think has lost a game since they've arrived, which is pretty amazing since he's played at least 10 times a day.
He got some train stuff, mobigo games, dvds, a space hopper and some clothes. We went bowling, did a little shopping, then came home for dinner, cake and he watched a little bit of Star Wars.
This year we decided to try cupcakes, since he's started noticing food other people are eating and we felt it was only right he have something to put some candles in.
So, courtesy of a good friend (thanks Erin!) we had a yummy chocolate cupcake recipe that was GFCFSF (I did add an egg) and Tom got to blow out candles, at least 3 times, since the first time he did it before his cupcake even hit the table.

Tom's made so much progress this year, but more importantly, he's a happier kid. He loves to play, is super-sociable, sweet, affectionate and is full of joy. Oh, and he's cute, which is always a bonus. I can't believe how big my tiny little boy has become.

Big One Beds

2011-02-20T19:20:00.000-08:00

Tom has lately been wanting a 'big one bed' since his 'little one bed' is apparently 'too hard work'. Whatever that means.
Anyway, it means that I've started the hunt for a new bed for him and hopefully this bed he will stay in until he can buy his own.
I never thought that the process would take so long. I never thought that I would spend so much time researching mattresses. It's sad. Not just sad that this has become quite the task it has, but that it should ever get to this point.
So, here is what I've learned -
- Mattresses are mostly made of synthetic foams, which, because they're petroleum-based, they are hideously flammable.
- Such hideously flammable materials need flame retardants because there are a few stupid fools out there every year who smoke in bed. I could argue that if you are stupid enough to smoke surrounded by synthetics, it's simply natural selection. But, in their 'wisdom' the govt has decided that the stupid are to be protected and the rest of us must be poisoned for their cause.
- The flame retardants used can apparently constitute 30% of the weight of a bed. They can be PDBEs, Boric acid (roach killer), antimony-containing materials. They can leach through the mattress cover.
- Wool is a natural flame retardant.
- Memory foam and other synthetic foams all off-gas, sometimes for the entire life of the mattress.

So, not wanting to expose Tom to any more chemicals than absolutely necessary, I just can't buy a bed that will do this for the 11 hours a day that he sleeps. I just can't stomach it. It makes no sense to do this.

So, the choices for organic, or natural beds and mattresses are confusing to say the least and the prices dazzling, and not in a good way.
It seems there is latex, both fake, real and multiple processes that involve freezing and not. There is wool, cotton, steel.
There are normal bedmakers like Sealy and Serta that tout natural ranges of products, but they all contain the roach killer flame retardant, or some off-gassing foam, or some other nasty.
It's all so confusing and I don't understand why things have to be this way. How did we ever get to a point where we sleep on such toxic products when we are supposed to be recharging our bodies and healing any damage we have done in the day. Why do people not know what's in these things? Why did it take us to have a child with autism for us to do so? Why don't bed manufacturers try harder to give us a clean sleep solution? Oh, and why, whilst we're at it, don't there seem to be any actual stores in a decent sized town, such as C Springs, that sell a 'clean' bed. Not one.
Anyway, we've come up with a bed decision for Tom after spending way way too much time on this subject. We're going for a Naturepedic bed, twin size (kids simply do not need queen sized beds, despite what the chap at Macy's suggested), for right around $1000. Sadly there don't seem to be any kind of discounts available either. Typical.

Skiing Fool!

2011-01-31T13:27:00.000-08:00

This past Sunday brought another excursion to Breckenridge. This time Tom had only one instructor and spent most of the time skiing on the main hill holding the hand of his instructor.
His instructor (Adam) tried to teach him to wedge his skis into a snowplow but Tom was having none of it, so we'll probably just go along building muscle memory until Tom just parallel turns by himself.
He spent the full 2.5 hours with Adam, then had some lunch on the deck at the base of peak 9, then Jeff and I took him up for a couple of runs down with his tether system. After this he was completely and utterly exhausted so we headed home.
I picked him up from school today to hear from his teacher about how he and another little kiddo in his class were talking about skiing and chair lifts. Apparently he was telling anyone who would listen..
We did manage to get a few pics this time though!

Together!

2011-01-28T18:44:00.001-08:00

Another day, another new word from the Tomster. This one is one of my favourites though, not a dreaded f-bomb or something equally bad to have to try and explain away to both Jeff and Tom's ABA tutor, but "together". It didn't even matter that it came bundled with yet another request for Plants vs. Zombies. Tom asked to play said game "together".
It even made us overlook the fact that he decided to poop just like his big brother Guinness, in the garden, although the description of the offending deposit was "it's beautiful".
He's making such amazing progress. I probably brag quite a lot about this, but I don't care. It's been so nice to hear from the speech pathologists at school and at his clinic that he has made such progress in the past few months, they can hardly believe it and I've had 3 such comments this week.
We still struggle with hyperactivity, which remains his biggest issue, but he is doing so many things that are unexpected.
- He regularly engages in role play, this week he's Buzz Lightyear (to the rescue) and has done this with us and with his toys, and he likes to act out stories he's been reading with his toys and trains too.
- He also seems to have finally got to grips with circle time, and now is working on a 20 minute circle time, having mastered 15 minutes this week.
I even left his binder at ACES today, rather than bring it home, since there are more new programs to go in there.

Other 'exciting' (everything is relative) news from us is that the search is on for a 'big one' bed, since he's apparently not digging his toddler bed anymore. That was a fun 10 minutes at Macy's today. Not. Thank goodness for a sales chap who has a 4 yr old and was happy to tell me that it didn't matter that Tom was jumping on the beds since they're being sold off as floor models in a week. Still trying to decide about whether to do an organic mattress for him, but leaning towards not. They're so expensive. We will probably just get a regular bed, let it vent before putting it in his room and get an organic cotton protector for it.
We're also going skiing again on Sunday. Hoping Tom has a lovely time again with the BOEC at Breck and that the weather is great for us too!

Interesting Day

2011-01-17T18:52:00.000-08:00

So, today was an interesting one. Tom started the day with a dose of DMSA, which we now have a new supply of, since our last lot ran out before Christmas and we were waiting until we got back from Montana to re-order from the compounding pharmacy we use. He takes one capsule of DMSA 3 times per week, every other day (and the weekends off).
Tom's been pretty hyper the past few days, not sure why exactly, but, today, aside from the hyperactivity, we had a couple of new experiences.
During sessions his ABA tutor runs his maintenance programs, one of which is yes/no questions and they tend to now be organized within situations, so if they're playing with trains, like today, she'll say (using today's example) "Thomas is purple and green" and waits for Tom to notice and correct using "No". Today, he went a step further, replying "No, he's blue, like the sky". This is an enormous jump for Tom. He's never used a comparison, ever. Was the DMSA a factor? Who knows? He does tend to have jumps though when taking it.

Then there was another new one tonight. After his bath, Jeff put Tom to bed and hears lots of noise coming from Tom's room, which is unusual, he is normally very quiet once he's in bed and drops off quickly (probably because he doesn't actually stop ALL DAY). Anyway, tonight, this is what we saw upon investigation -

Where is Tom?

There he is! Little toad had sneaked his Mobigo upstairs and was playing it under his covers.
Rumbled kiddo. Rumbled.

Zombies!!

2011-01-06T12:44:00.001-08:00

So, what do you think happens when you leave a 3 yr old with your laptop open to Plants vs. Zombies?

Well, if you've got our kiddo, he just starts playing by himself. Tom appears to understand that you first have to pick your plants, then work on positioning them to kill zombies, and you've got to collect sun along the way.

Yep, well, it appears we have an addict. But, he is an addict that can operate a mouse and get the concept of a computer game. So, maybe I have another bragging point. Awesome.

Aside from this little development, we're looking forward to next week's schedule being back to normal. Preschool, ABA, speech and OT all in one week. Yippeee!!

As for me, hubby told me to go and get myself a new hobby, one that wasn't related in any way to Tom or autism, or computer games (since apparently those are now linked to Tom and are also sad). But, I don't think he was banking on what I would choose...
Move over Torvill and Dean - here I come! I've always fancied learning to ice skate properly and since we do now live in the heart of USA olympic figure skating, what could be a more appropriate choice?! So, that's some of my weekly little 'me' time and hopefully doesn't turn into me and an orthopaedic surgeon time. I have also indulged this new hobby with a little purchase, in true Becky Brandon nee Bloomwood style - I bought myself a pair of ice skates. Woohoo! Very pretty they are too. And the chap that fitted them for me also does the current US figure skating champ Rachael Flatt's and is an ex US national pairs skater, and, has also fitted skates for Christopher Dean. How cool is that?
Looking forward to tonight's first class, will update with any non-embarrassing pics at a later date...

Goodbye 2010!

2010-12-31T06:59:00.001-08:00

So, we are at the last day of 2010. It's been a busy year for us and a good one.
Jeff finished up his master's degree at Air Command and Staff College and started his new job this summer at Schreiver AFB in Colorado Springs, doing something or another. It's the first time I can't actually visit him at work, if I were so inclined, so aside from that, I have no information to add.
He also finished up the last of his actual classes for his Texas A+M master's degree in Wildlife Resource Management (or something similar which I can never remember the actual name of). He only has his final dissertation-thing to write and I believe he is doing a book chapter with his advisor for this, defend it and then graduate and he is done.
Jeff was selected for promotion to Lieutenant Colonel and should pin on sometime this year, although it could vary from April to August as to the actual date. Always nice to get a pay rise - yippeee! He has now clocked up 14.5 years in the AF and we are inching closer to that magic 20, also known as retirement.
Jeff also decided to leave the fold of BMW drivers and traded in his car for a Subaru Outback, which he loves.

I've been busy too, I did some volunteer work, for Autism One, where I helped with the silent auction (and will be co-ordinating this for 2011) and with Schreiver AFB's Airman and Family Readiness Center with their special needs resource fair.
I decided this year to start towards a new career in dietetics. Having seen the big difference in Tom since both changing diet and adding some supplements, this is an area I'm really interested in and feel that there are a lot of parents out there not getting this information and their kids thus are being denied the progress that they might have. So, that's an area I'd like to work in. I've been working this year on the pre-requisite classes for entry to either a BS or MS in Dietetics, since I haven't actually done any biology classes at college level. I've managed to clock up 7 classes this year and am pretty pleased with myself for it. I plan on completing the other 3 pre-reqs this year and applying in January of 2012 for entry to the program, which will start in Sept 2012. In the meantime, I will try and get some work experience in the area.

Tom has seen the most progress this year. For the most part, his digestive issues are managed, we are working on his yeast. He is stringing sentences together and using pronouns. He can drink from a regular cup without problems. He potty-trained (including overnight).
He also started a new preschool, started speech therapy in earnest, started OT for some sensory and fine motor issues and continues with ABA, in which he has made amazing progress.
Tom also started swimming and ski lessons. So, he's been busy too.

As a family, we moved from Alabama to Colorado, where we hope to stay for as long as possible. We finally sold our house in Texas, which was a welcome relief. We also saw visits from the Harrises and the Stockwells. We took trips to Austin, Georgia and Montana and Tom and I spent a week in Chicago.

2011 will bring, we hope, more progress on the Tom front, Jeff's pin on, Jeff's completion of his A+M degree and the wrapping up of my pre-reqs. Who knows what else? We'd certainly like to get to the UK, especially now Tom is a decent traveller and we are expecting a visit from the Harrises at some point. Tom and I will also be going to Chicago for Autism One again.

"I Not"

2010-12-29T20:01:00.000-08:00

We've had a new milestone - Tom's now saying negatives. "I not going to bed", "I not brushing teeth", "I not happy, I not". This may not sound like much progress, and indeed, it's 'not' one I like dealing with. But, it's normal. First comes the "I want", then comes the "I don't" or, in Tom's case (although he has said 'don't' a couple of times) the "I not". So, that's another speech goal we have achieved. Yay.
Another little gem from him is the f-bomb. Yup. Sad when your kid has picked up an f-bomb, and both mine and Jeff's first comment was "well, at least he's using it appropriately". Oops.
So, that's one we're going to need to unteach somehow. Preferably before he starts back to school in a week.

Anyway, aside from those updates, we've just got back from our trip to Montana for Christmas. We has some friends join us and had a great time, skiing and sledding, as well as getting our fix of Bozeman.
Tom was completely spoiled of course, and luckily loved his toys, including some lego and a new VTech Mobigo. It was a toss up between the Leapster and Mobigo, but we went for the latter in the end because the Leapster is completely pen-steered and since Tom isn't so good with a pen, I didn't want to put him off the thing because it started off difficult. Anyway, the Mobigo was a hit and he has already got the hang of a few of the games, all by himself. Yay!
Another hit of the holidays for him was his first Toy Story viewing, so, now, he's all into that too.

We also did a few days skiing and Tom also had a few hours with volunteers from Eagle Mount at Bridger Bowl. They were wonderful with him and he thoroughly enjoyed himself. It's great to see adaptive programs at so many locations. Who knows, maybe when we eventually relocate to Bozeman (at least that's the plan), I'll be able to volunteer with them.
Jeff and I also tried skiing with Tom for the first time this holiday and we got a little ski tether system to try and help him get some extra time on the slopes. Of course my legs aren't used to snow-plowing all the way down the hill for multiple runs. Ouch. Jeff and I also tried skiing with him between us holding onto a pole the way he has done with his instructors and that also worked. So, hopefully now, although we will continue with lessons, this opens up an opportunity for us to go to a cheaper resort than Breckenridge and just get a few hours in for a few bucks...

Anyway, we're beat after a 12 hour trip back from MT today (we left a day early to avoid a big storm heading in), so I'll leave it there...

Where's Tom?

2010-12-13T15:21:00.000-08:00

So, yesterday we returned to Breckenridge for another ski lesson for Tom (and a little fun for ourselves).
We got there, saw Tom off with his two instructors (this time Ashley and Tim), who were fabulous, and headed off to the lifts ourselves. We watch Tom from the lift, already on the magic carpet and shuffling around having fun and looking really cute.
Jeff and I skied for about an hour and a half and decided to go and spy on the Tomster, so we headed down to the magic carpet area, and low and behold - he's not there. Upon thinking he had already had enough Jeff pointed something out, coming down the main hill behind us - 2 instructors holding each end of a 6ft red pole, with Tom between them, skiing, holding onto the pole.
It was really cool, he's definitely got a good feeling for skiing. We watched them ski down to the chair lift (the big 6 person one), hop on with him and we followed him up, 2 chairs behind.
He did another run all the way down the hill and then looked so beat he called it a day. But, again, he lasted 2 hours, skied the whole time, had a ton of fun and apparently was initiating his own turns whilst holding onto that pole. We met him at the BOEC office where we found him hanging out, having a drink with his instructors and insisting he had to sign his name on a bunch of their forms.
So, I get to brag. It doesn't happen very often. Tom doesn't say as many funny things as other kids, because his speech isn't as well developed yet. He is a handful. I get parenting advice from strangers that don't understand that his behaviour is not his fault, but also not mine. He is impulsive. He couldn't do a group lesson at anything right now. I have to hold his hand everywhere or he will run off. He hits at preschool when he can't communicate what he wants, or doesn't want. But, I now have another boasting point. Not just that he could do a 48 piece jigsaw puzzle at 3, unaided, and quicker than some of our friends. But, he can ski. At 3.5.

Adventures in Biofilm

2010-12-10T20:52:00.000-08:00

So, we had Tom's DAN! Doc follow-up yesterday and we also met with the nutritionist that works with him. We went over his test results and given that he does have diflucan resistant yeast, we're going to have a go at a biofilm protocol.
A biofilm is what can form around bacteria and fungal species, protecting them and preventing anti-microbials and anti-fungals from doing their job. It could be the reason for the diflucan resistance.
Biofilm protocol consists of dosing a combination of enzymes to break down that film and also, in our case, Na-EDTA to bind the metals that comprise part of the biofilm matrix. When the film is broken down, the anti-fungals are able to reach the yeast and kill it. We then dose with a prebiotic and probiotic to help sweep away the dead yeast cells and repopulate the gut with good bacteria.
Tom also has klebsiella in his gut (from last stool test) and this protocol is also effective with that.
So, we will add this protocol once a day during week days and twice on Sundays, since it has to be started on an empty stomach, away from food and that is pretty tough to do even once a day with a toddler who gets ratty if he hasn't eaten.
We are using Klaire Labs Interfase Plus and Biotagen to work this protocol.
Hopefully this protocol will help reduce the speed at which he declines into a hideous yeast flare the second we pause with an anti-fungal. I have heard that it's almost impossible to get rid of the yeast until the metals are normal, but, this certainly can't hurt and might even help, by improving his gut health and therefore his vitamin absorption and immune function.

So, onto the chelation review - we have decided to continue with the current protocol of 3 days per week, one cap per day of DMSA (when we get some more) since it is pulling out metals that are not good for Tom (lead and mercury) and we are seeing reductions in other nasties, such as Al (which has been implicated in Alzheimers).

Add to that our recommendation to increase Tom's Vit D3 supplement, since the days are shorter, sun less strong and it's colder, so Tom doesn't go out as much. Also, since his level was low, we are going to try and improve his stockpiles.

Finally we are going to try and help calm down his hyperactivity with either a revisit to GABA or 5-HTP (similar to tryptophan - that of the turkey coma). So, both natural, but since Tom's hyperactivity is one of his biggest problems, we need to see if we can help him regulate better and so this is worth a try.

I lied about photos, I haven't taken any, but we're taking Tom for ski lesson number 2 on Sunday, so there might be some then...

Heavy Metals....

2010-12-04T18:49:00.001-08:00

So, I'm finally getting around to posting regarding Tom's heavy metal issue.
It all started with a blood test when we were in Alabama that showed detectable levels of lead in his blood. That's not normal. There is no safe limit for lead in a child's blood. We tested everything in sight to try and determine where it came from, but had no luck.
When we first got to AL we saw Dr Adams, a DAN! Dr that worked out of Birmingham. After the blood test, we agreed we should consider chelation.
Chelation is a bit of a dirty word in the medical world, especially with respect to autism. Indeed, at the appointment in TX when Tom was first diagnosed with autism, the doctor used a couple of half-truths to try and scare us away from it. Luckily, I knew of the cases he was talking about and pointed out that there was more to the story and that we would make our own minds up if the road ever led us in that direction.
Well, that blood test firmly sent us down the road.
Heavy metals have an affinity for fat, so, considering the big old lump of cholesterol known otherwise as a brain, you can guess where this is 'head'ing.

So, after a while in AL, we decided that although Dr Adams had been helpful with our testing and yeast issues, we felt we didn't have enough support, due to distance and the fact that he does not practice as a full-time DAN!, to pursue chelation there.
Roll on to Colorado Springs and our new wonderful DAN doc.

We decided to firstly run a hair elements test, which showed that he had very high levels (over 68th percentile) of Al, Sb, As, Cd, Sn. Lead looked oddly normal, as did mercury. Using the counting rules, Tom also met one of the conditions for derranged mineral transport, in other words, his metal representation in his hair test did not show the correct distribution one would normally see.
So, given this info, we decided to try a chelation challenge, using DMPS.
The challenge consists of a pre-challenge urine sample and then a post-challenge (which involves a single dose of DMPS) test which is timed over 6 hours. Let me tell you, it's much easier when kiddo is potty trained, probably another good reason for waiting a little while to do this, the sample collection was pretty easy.
So, we sent both of the samples off for metals analysis and this is what we saw -

Barium output went from 5.4 to 33
Lead went from 0.7 to 2.4
Nickel went from 6.1 to 12
Tin went from 0.5 to 2.5

Interestingly no mercury was detected. None. Zip. But, of note here was that we seem to have stockpiles from which to draw barium, lead, nickel and tin, none of which are considered good for someone. We knew he had lead, and seeing a tripling of the output level, decided to go ahead and use the DMSA we had got in AL, but not used. Our regime was just to use one capsule every other day for 3 days per week.
I should also add that we had a bizarre development the day after the DMPS challenge dose. Tom had always called me 'mama'. No idea why, it's not something we ever taught him, or really encouraged, I always used 'mummy', but, the day after that dose, he woke up and has called me 'mummy' ever since. I'd given up on trying to get him to say it, and even started using 'mama' to try and be consistent for him. So, that was a weird one and I'm sure many will think it was a total coincidence. But not for me. It was a breakthrough.

So, we started with that and typically Tom got sick in the middle. So, we did a couple of weeks, then took a week off, then restarted.
Our final week we did the DMSA for 3 days and after we finished, the next day we did our check up DMPS challenge to see what had changed.

We got -

Antimony - 0.4 (previously undetectable in both tests)
Barium - 15 (down from 33)
Cadmium - 0.3 (previously undetectable)
Lead - 2.9 (up from 2.4)
Mercury - 2.9 (previously undetectable in both pre and post challenge tests)
Tin - 25 (up enormously from 2.5)

Our nickel, aluminium, arsenic, caesium levels all went down from previous testing, which can't be a bad thing.

So, what does this latest test tell us -

The chelator pulled from different reserves, maybe because the other metals are starting to dwindle? But, the lead went up again. So, unless Tom's been chewing on some old lead solder, there is more in there. Also, very interesting that the mercury started showing. He hasn't had any mercury exposure that I know of. We stopped vaccinating Tom at 18 months, he doesn't eat tuna.
But, it seems that somewhere he has a little reserve of mercury, still has lead, apparently has tin, some cadmium and some antimony.

I also wonder if the enormous jump in his speech in the last 2 months has had anything to do with this? It wouldn't surprise me. It also wouldn't surprise me if the eye contact improvements and pretend play skills are linked to it.
I'm not going to say definitely, but, it's one hell of a coincidence. He's mastered over half of his ABA programs in about 3 months. He's finally learning to colour and draw shapes other than circles. His progress is jumping at a very fast rate.

He's still very very hyperactive and has the attention span of a flea. But, we're seeing progress and whatever is going on with him right now is good and is working.

So, no pics with this post, but I'll add some in the next.

We also have an appt with his DAN next week and I'll update then as to what our next step is...

Little Bode Miller!

2010-11-26T15:20:00.000-08:00

Yup, we were right (and are so proud) - Tom took to skiing like a duck to water.
He loved it. We booked him a 2.5 hr lesson with the Breckenridge Outdoor Education Center, which runs an adaptive program that also caters to kids on the spectrum. They were fantastic with Tom. He had his own instructor, actually today, he had 2, which was cool and it only cost $115.
We did wonder how long he would last, but he stayed out pretty much the whole time, maybe came in about 15 mins early because he was completely zonked (after also going on a chairlift ride).
So, definitely good to go again. Hopefully we'll get another lesson in for him there before Christmas. But, we are thrilled that he enjoyed himself. In his instructor's words "he had a smile on his face the whole time". Smashing. Here's a quick video of the Tomster in action (complete with little dance moves at the end):

Jeff, Tim and I got to get a few hours of skiing in ourselves and luckily the snow at Breckenridge was great, especially considering how early it is in the season. Ahhh. I love living in Colorado. of course we'd rather live in Bozeman, but for right now, this is awesome.

Here is the end result. We left after lunch because Tom was so tired and we didn't want to make it too late a day and we had a 2.5 hr drive back to C Springs.

Ready For Ski Season!

2010-11-20T15:12:00.000-08:00

Tom is officially now ready for ski season! We got him a season rental of skis and boots today and are planning to head to Breckenridge on Friday, and hopefully will have him set up with his first lesson.
A word of advice for Colorado Springs peeps - if you want to rent from outdoor rec at USAFA, don't leave it until November - apparently they only rent out 500 sets, which is usually done by the end of October. But, for pretty much the same price you can go to Christy Sports on Academy and get a season rental for $89. Oh, plus $5 for a damage waiver, which, considering Tom, is a bargain.
So, of course I couldn't resist getting him to try on all his gear for a piccie or two. Very very cute.
We also had him walk around a little bit on the skis to see how he did, I have a feeling he's doing to be a natural...

In other news, we no longer own a house in TX! Woohoo! Extremely relieved and happy to be done with that extra stress and especially to be closed 3 weeks after the offer. Awesome.

"Christmas Tree!"

2010-11-09T18:17:00.000-08:00

This year for Halloween, Tom was a pirate, again. Since his costume from last year still fit him, we figured we may as well save the $20. It's not like anyone here remembers. This year, we decided to give him a few pointers on trick or treating and he got it easily. He even responded appropriately when we asked him what a pirate says and what he's supposed to say.
Jeff generally takes him around the block and I stay home to hand out sweeties. He did great. He found some kids to walk with and would happily say "Trick or Treat" (which for a while he thought was actually "Christmas Tree"), then say "thank you", after helping himself.
He was so excited all evening, even after he got home he loved handing out stickers (we decided to do stickers and tattoos this year rather than sweets). He even took his pumpkin out on the lawn to see the kids. Bizarre, but in some ways cool -got to love pretend play and consideration, even if it was for a pumpkin.

We've also been a bunch of sickies here in CO. Tom and I both got colds, then both got some kind of virus/stomach flu. Tom got the easy dose of it, me, not so much. Plus, mine came on rather quickly, just as we were leaving Phantom Canyon brew pub in downtown CO Springs. Nice. Haven't had to puke in the bushes since college. Ah, the memories.

Good news on the ABA front - Tom's mastered most of his current programs so we're going to start on some new ones soon. He's also finally starting to get the hang of colouring (yay!) and whereas before I was wondering how he would learn to read, since he knew all the letter sounds, but had trouble putting them together, he's starting to sound the letters in simple words. I think he'll be starting down the reading line soon, hopefully helped along with an ABA sight words program.

Finally - we got our first snow here in CO this afternoon/evening. Lovely to see snow, but hoping the novelty isn't going to wear off!

Latest Gettings Up To..

2010-10-17T19:27:00.000-07:00

It's been a reasonably quiet few weeks here in the Stockwell house.
We did go to Montana for a week, but even that wasn't as action-packed as usual. We did go to Yellowstone NP this time, which we haven't done for over a year or so and the fall colours there were just lovely. We also took Tom around some of the geothermal features to see what he would notice or be interested in. He actually seemed to like it, loved the Bison and called the geysers 'big hots'. He even waited reasonably patiently for Old faithful to go off, 10 minutes late. Tut tut. what do you mean you can't accurately predict it closer than about 10 mins. Surely they have better sensors than that? Anyway, we gave him a lollipop to eat and he was perfectly content.
We've always had interactions with Japanese tourists at Yellowstone. Last time it was Guinness who was fawned over by a couple of young girls, who were 'so proud' of seeing a Japanese breed in the US. This time however it was our own little tinker that a lady wanted a picture of, complete with red lollipop. So, somewhere, Tom has become a tourist attraction in Japan.
I think we were both just tired out from the past couple of months of getting Tom back on track and settled into school and therapy. Jeff did get to go fishing for a day though to a spring creek about 10 minutes from the house and we did enjoy just relaxing in the most lovely place. We love Bozeman. Hopefully our plan to go there after Jeff retires from the Air Force will come to fruition

We're very lucky to have a great little traveler. We've misplaced Tom's DVD player for the car, so decided to risk going without it. It really didn't seem to matter. Since there were 2 of us plus Tom, we were able to keep him occupied with books, various toys and food and he did just fine. Thank goodness. 12 hours with a kid screaming for Bob the Builder or Phineas and Ferb really would have been hell on earth.
So, what else have we been doing? We did go to the AF -Navy game at the academy, which was great, even better since they won. Tom now thinks that every time we go to the academy we're going to see football. We also went to Oktoberfest there yesterday, which was basically a couple of beer and brat tents and a ton of inflatables for kids, a little train on wheels and a bunch of animals to pet and ride on. Tom loved it all - bouncing like a fool, petting animals and of course the train, which he went on by himself.
We have a couple of notables from some of these activities. I saw Tom yesterday on the bouncy castle patting a little girl who had fallen and was crying, saying "it's ok" and also when Jeff took him to see the goats, he was shoving hay at the goats saying "try, eat". Hmm. I wonder where he got that from. But, nice to see those little observations anyway, real glimmers of recovery from him.

His speech is doing really well lately. Not only are we able to understand more, but he's putting longer sentences together, the other day we had "I want to go outside and play a game again". One thing when you have a speech-delayed kid is that you notice all kinds of things people don't, even other parents. For us, this was a big one - he is linking 2 thoughts into a sentence. Huge.

As for food, also far fewer protests and more variety of tastes and textures. He now eats a bowl of veggies with his dinner many nights and although sometimes doesn't seem keen, if you tell him he won't get his cookie if he doesn't eat them, he just gets on with it. Broccoli, peas and carrots have been recent ones. We re-introduced peas after a year off them to see how he does with them now, since his gut has settled down so much and we've seen no ill effects.
He protests so little with new foods these days that we've put on hold his new foods ABA program.

As for ABA he continues to make progress. One of his programs is a safety one, so that if he does wander, he knows his personal information, and our contact info. He has mastered his name, date of birth, phone number, mine and Jeff's names, his address and his school. I'm not sure what other information he will need for this program. Not bad for a 3.5 yr old.
He's still working on attending and reward systems and is still not very good at pronouns or cutting and colouring, but, is gradually improving.

He also loves his new school, and we're even now at the point where I just send him in at the door with his backpack. Awesome.

Anyway, that's about it, this post is long enough already!

Settling Down...

2010-09-20T19:25:00.000-07:00

Things are really settling down here now in Colorado. Jeff is settling into his job and Tom and I are finally getting close to a routine.
This past week we had Tom's IEP meeting with District 20. Tom goes to the preschool at Briargate and has settled in well. His teacher is wonderful and the aides and therapists at the Briargate facility have been nothing but helpful and kind.
The preschool is an integrated program and Tom goes 4 mornings per week for a total of 12 hours a week. The main aim for me is that Tom interacts with typically-developing children, so that he can model his behaviour on them, but for him the aim is to spend time with children his own age and hopefully make some friends along the way.

I got warm fuzzies about the district when the nurse called me to discuss Tom's food allergies to ensure that it was included in his IEP. The actual meeting went well. There was the OT, SLP assigned to Tom's class, his teacher, the district autism specialist (who also happens to be a military spouse - yay!), the social worker and me. We talked over the goals for Tom and therapy provision for him to help achieve those goals. We settled on 2 speech sessions a week, 1 group and 1 individual and 1 OT session per week. He will also get 30 mins of one to one time with his teacher, who is both an early and special education specialist and the autism team will provide support as needed. I am more than happy with this provision for him. Any more I think would distract him from the social experience that I think preschool is important for, for him.
So, we're good to go on the school front. His teacher and the paras in the class report that he's settling in well to the class routine.

On the private therapy front we've got our week pretty loaded. Tom has private speech therapy (30 minutes each) twice per week and OT once per week (for 50 mins) in addition to his ABA, which, after Oct 1st will settle to 15 hours per week. We've been trying to use a little extra money we have left over from this fiscal year's allotment, so he's been getting an extra few hours per week. On that front he's doing great. He's already mastered a couple of his ABA programs and continues to make progress. His speech is also improving and we're working on his sensory seeking issues. He is finally starting to listen to us when we tell him to 'stop'. This is wonderful, since we fear very much that he will run into traffic.

Add to all this 'fun' a weekly swim lesson for Tom. He's had 2 lessons so far and he LOVES it. It's a battle to get him out of the pool each week and he loves his cute little instructor at the Y. She has previous experience teaching children with autism and is very good with him. We're opting for private lessons for right now, since he's very distractable and probably wouldn't do well in a group environment quite yet. Maybe when he can swim, we can enroll him in a group-based class for improvement purposes, but first strokes first.

It probably seems like we're putting a lot on him, but most of his therapies are fun for him, ABA especially, since it involves such a lot of praise and positive reinforcement and much of it is play based.

We are really trying to catch him up with as much therapy as we can, so that over the next two years, hopefully, he will improve enough to be able to function in a kindergarten class with little help, maybe a pull out or two for speech and OT, but otherwise, he will be mainstreamed.
We think it's a reasonable, achievable goal, as do the IEP team. I hope we're on the right track.