Perhaps too soon

Gus had a horrendous day on Monday, which led to a phone conversation with his counselor and with her once again trying to convince me to try him on medication. I was getting very worried about his impulsivity, so I spoke to his pediatrician (the specialist he sees is also leaning towards medication). Everything is in place to decide on a medication trial - either Focalin or Strattera.

The funny part is that Tuesday, Wednesday and Thursday, he was great at school. Not a single complaint from his teacher, and he even got to go with her to the school plant sale where he picked out some marigolds for me.

This does not sound to me like a child in need of medication. Maybe we're jumping the gun on this.

I'm reminded of a Dave Matthews lyric from a song called You Never Know:
"But rushing around seems what's wrong with the world..."

You're not kidding Dave.

Rush to vaccinate, rush to medicate, rush to integrate.... Can't we just slow down a tick?

Is This What It Feels Like?

I had a very uncomfortable experience last night and somewhere in the midst of it, I started to wonder if this is what Gus feels like when he's wound up. If it is, I really feel for him, because it felt awful to me. This wasn't the first time I'd felt this way, but it was the first time I'd ever connected the feeling to what he might experience.

I had to work last night so I had a fifteen minute nap around 8:30 and some caffeinated tea around 9. After I finished my tutoring shift, I stayed up to take care of some other business until around midnight. I was thoroughly exhausted, but I could not fall asleep. After forty-five minutes of tossing and turning I started to look more closely at what I was feeling and I actually started to write down all the different sensations.

At 12:53 am, there was a loud humming in my ears, like the sound of a high voltage cable. This was mostly what was keeping me up. It was coming from inside my head and no matter what I did, it wouldn't stop. Not only could I hear it, but I could feel it - like my entire body was vibrating at a high frequency. Nothing worked to stop it and after a while, I really wanted to beat my head against a wall. The last time I felt like that was when I tried to go vegetarian years ago. I ended up with WAY too much energy and for 5 months, I couldn't sleep and always felt that humming/buzzing going through me. It didn't go away until I started eating meat again; the meat had a grounding effect on me.

In addition to the humming, the other noises in the house started to seem louder - I suppose darkness does that, but it made me extremely jumpy. I made my husband get up and check the downstairs once and two other times, I sat bolt upright, on high alert.

My muscles were tight. Being a yoga teacher, I've become very attuned to my body and I'm accustomed to a feeling of muscles hugging the bones when the muscles are engaged. Last night my muscles were choking my bones, causing a dull ache, and I had to keep stretching and flexing because of the discomfort.

Last, my mind was racing. I had more images and ideas than I could even keep up with - they just added to the internal noise. For a while, I was preoccupied with the stuff that's been going on with Gus's school, then with all the things I have to take care of...stupid things like applying for a new library card. That is not something that should keep me up at night.

I don't know if it was the caffeine or too much computer time just before bed that overstimulated my brain. But I have to work again tonight and I have a busy day today, and I don't know how I'm going to drag myself through it. One thing I do know, I'll be a lot more sensitive to Gus next time he wakes up in the middle of the night and can't go back to sleep.

The Never-Ending Battle

Yesterday, Gus was presented with an award at school: the Principal's Award for Outstanding Effort (he also got Academic Achievement). I say presented because when his name was called, he bypassed the principal, grabbed the microphone and shouted to the entire school, "Hey! Is this thing on?"

I've been chastised by at least one friend who took exception to the fact that I made him apologize to the principal. She felt that it was normal kid behavior and that the school has unrealistic expectations of kids, particularly the ones with special needs, and that it was funny. A few people thought it was funny, and at a certain level it was.

It also provided a little more ammunition to the school to push for medication.

I'm starting to think I'm fighting a losing battle here. He has no impulse control, and the boy tries - his efforts are Herculean some days. He cried at least twice yesterday because he knew that he shouldn't have done it, but he'd already been having a rough time and he just could not hold it together.

Part of me wishes that they would just get off his back. In a sense, my friend has a point - kids do things like that. But at the same time, the inability to control his impulses can get him into some serious trouble, possibly even danger. For example, he has walked into people's houses (and I don't necessarily mean people that he knows well) - just saw the door opened through the screen and waltzed in. That's a dangerous thing for a kid his age, but imagine the consequence if her was, say fifteen, and did that. He could get arrested, that's IF the person didn't have a gun and decide to shoot first and ask questions later.

At any rate, the counselor jumped at the opportunity (I had requested to talk with her because I'm concerned about how his self-esteem is slipping because he can never seem to meet the high expectations, which may be unreasonably high) and she talked to me about trying meds. She suggested that we look into Strattera and doesn't feel that Ritalin works well for kids on the autism spectrum. I said I'd look into it. I mean, should I wait until they threaten to kick him out of school because they can't handle his behavior?

I haven't done extensive research on Strattera, but it seems that is not a stimulant (a plus) but has also been associated with liver problems and suicidal thoughts.

If anyone has experience with this or any other medications, your thoughts would be appreciated. This is a horribly difficult decision that I'd rather not make, but I don't think I will be able to dodge it much longer, not if I want to keep my child in public school.

I.E.P. Diplomas Mean Squat

At Gus's last CSE meeting, it was mentioned that we have another year before we have to worry about standardized testing. I had asked about it last year as well. It boggles the mind how students in special Education are still required to take these tests. What's more disturbing is that if they don't pass the tests - or at least a certain number of tests - they do not become eligible for diplomas. This means that unless they complete at least an additional year of schooling AND pass a GED exam, they can't go to college or enlist in the military (military being a moot point in most cases anyway, I'd think).

This has bugged me for years, even before Gus was born when I was teaching high school. I worked in an incarcerated setting with children who were navigating the legal system. The last thing on their minds was a Regents test. So almost across the board, they failed and were rendered ineligible for regular high school diplomas even if they avoided long jail sentences.

What is the point of forcing a child who can't sit for thirty seconds, let alone three hours, to take an exam that stacks the cards against them? Years ago there used to be allowances for Special Education students to provide portfolios to demonstrate mastery of the state curriculum, but those have been phased out. It was certainly a fairer assessment tool than the damned standardized tests that are killing our educational system and leaving every child behind.

Test taking does not equal learning. There will be some brilliant kids denied higher education because they can't pass a stupid test, while those who can pass the tests will only have managed to prove that they can regurgitate information at least until that three-hour block of time is done, but not that they can necessarily think critically or assimilate the knowledge beyond the piece of paper with the annoying little circles.

Gus would probably be able to pass the third grade English exam now, if he could actually focus long enough to finish. It's going to be a thorn in my side for sure, but hopefully they can give him accommodations that will actually allow him to show how much he can spit back. No test will ever give a true picture of how smart the kid really is, but if he can get a diploma and go to college, I'll be satisfied with having that knowledge for myself.

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! :-)

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.

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.