Saturday, May 3, 2008

A Break from the Gloom and Uncertainty

Two fun things about Gus today...

Gus woke up around 5:30 and came into our room as usual, said good morning and turned on the light. He lay down on the futon in our room for a few minutes, but then got bored, so decided to climb on us instead. Daddy took him to his room and set him up with some toys, where he stayed very obviously content and happy. How do I know this? He started humming the themes from Mario Kart - his favorite video game! I was only half awake through all this, but what a nice way to come into full consciousness, listening to your happy child humming away without a care in the world!

The really big thing is that Gus is receiving a Principal's Award for Outstanding Effort! Woohoo!!! I can't even express how proud I am of him! It seems as if this is a school-wide award, meaning that he was selected out of all the students in his school, not just his class (I think that's the case anyway). I know he's been mainstreamed into one class - music. I'm just floored.! The assembly will be on Monday and I won't miss it for anything :-)

So that the good Gus news of the day! :-)

Friday, May 2, 2008

Still Unresolved

Gus had an appointment with the Developmental Specialist on Wednesday, which of course through my new found sense of relative equanimity out the window. He seems to think that we should consider trying Gus on ADHD medication in the fall. He'd start with a low dose of Ritalin and see what happens. One thing I'm pretty well convinced of is that I don't want my son on drugs. I've got two major concerns, just about the physical impact of those drugs:

Increased heart rate
Decreased appetite

My child already has a pretty speedy heart rate; I can't imagine giving him something that would speed it up even more. That seems ludicrous to me. And he's skinny as a rail, despite eating as much as he can get his hands on. He certainly does NOT need to lose his appetite.

These are just the immediate physical problems that I'd worry about. Then there's the long range effects, which I refuse to believe don't exist as the doctor keeps trying to assure me. And do I really want to start a seven-year-old on the road to a drug dependency? I just can't see my way clear to that right now. Also, my husband was put on Ritalin as a kid for a short time; all it did was zonk him out. He didn't focus any better. This suggests to me that Gus might have the same result.

In my panic, I suggested to my husband that maybe we should try gluten free, just to be sure. Why should it be easier to consider drugs than dietary change? He said he'd go along with it, but was clearly not pleased. That night I started thinking, again.

If I look at each of Gus's 'issues' individually, I can trace every one back to myself or my husband. His biggest problem (academically) by far is attention span and difficulty with sustained attention. Both his parents continue to live with that. I don't have ADHD, but I've always had a wandering mind. No one ever thought twice about it because I was a straight-A student. I also talked incessantly in school; Gus talks incessantly all the time. Most of the hyperactivity and attention stuff, not to mention the fine motor skills are things that my husband still struggles with. I've had loads of sensory issues forever, including trouble with noise, cold and physical contact (getting a massage is like torture most times). But for all those difficulties Gus seems to have inherited from us, he's also picked up an incredible memory, a high level of intelligence and a lovely affinity for music (perfect pitch, even though he can't play an instrument or read music). So I'm not trying to make excuses or diminish his successes, just making the point that as far as I'm concerned his weaknesses are genetic, and it's not unreasonable to note that some genetic conditions worsen with each generation.

Does any of this mean that he wasn't effected by mercury? No. I double checked with the specialist and apparently, they DID NOT test for mercury a s I thought. Only lead. And, we realized this morning that last summer, my father-in-law had broken one of those new lightbulbs - the ones with the mercury in them (which I didn't know at the time). Hm...interesting to note. I wonder what they would have found if they DID do the mercury screen after that. The medical field amazes me sometimes. I think I will pursue this, just out of curiosity, but that doesn't mean I'm heading towards chelation - let's be clear on that for now.

I tried an experiment last night. We had taken the kids out for MM's birthday. I tried to steer her towards a Japanese hibachi place, but she was set on a steak house. So I decided to ease up on the dairy ban for a night, just to see what happened. Gus had a cheeseburger and mashed potatoes. By the time we got home, he was very gassy and his use of words slipped. He was still talking, don't get me wrong - the difference was very subtle. But he wasn't being as clear or lucid as I've come to expect. The past two nights, he's been exhausted to the point of tears. The first night he curled up in my lap and clearly told me what was upsetting him. Last night, he did the same thing, but part of what he was trying to tell me came out mumbled and garbled. Even this morning, my husband was trying to talk to him and had to remind him to use his words. Gus was talking like a Pokemon more than using his words. Was this in response to dairy? Maybe, maybe not. But I think I'll stick to casein-free for a while longer because if nothing else, the air in the house will be more breathable without it.

Wednesday, April 30, 2008

Straddling that Yellow Line in the Middle of the Road

I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.

I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.

I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.

There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.

My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.

All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.

Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.

I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.

When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?

I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.

I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.