Autism Watch: 2007

Posts Tagged ‘casein-free

It’s been one of those weeks — actually, a ten-day span of one crappy incident on top of another, interspersed with fun things and relaxing moments…followed by another crappy incident. Today, it was going outside to pick up ds from school to find that something (someone?) had 100% shattered my driver’s door window, rendering it undriveable. Here I sit, a birthday dinner to attend in two hours, waiting on an auto glass repairman. Ka-ching. Ka-ching. But what’s another $210, right? (It’s got after-market tinting, so of course it costs more. Sigh.)

Anyway, I had one of those autism conversations last week, one where you wonder later if you should have just shut your mouth rather than actually share your opinion and help someone else see the other side. The kind where you wonder why you should have to be the one to cave dare we lest ‘offend’ someone, when in reality, I was really hoping to share something that no one may have shared before.

I’ll back up.

We attended a Halloween party on Saturday. Family-style, with kids running all over. As usual, it was a blast. Lots of activities for the kids, and accommodations for my little guy so he didn’t have any (as many?) meltdowns. While sitting with some other parents, a woman married to teacher was telling me about vaccinations. I (mistakenly? stupidly?) shared that my friend had just experienced a vaccine reaction in her child, quite a severe one. Pretty banal comment actually, as we’d been talking about kids needing help in school. Well, the ‘teacher in the family’ light went on, before I even had a chance to realize it. Apparently this woman’s husband doesn’t believe in the GFCF diet, doesn’t believe in anything biomedical or anything, basically, outside of school- or doctor-provided therapies. Okay, fine, sad, because I have seen it work firsthand, but you don’t have a child on the spectrum, so it’s understandable she’d have no experience because she’s not living it daily. But, here’s where the enlightenment comes in. Turns out, her husband was outright angry at parents who do believe the diet because he doesn’t believe in it, and instead believes that the improvements in the child must be from the work the teacher does; in return, when a parent claims that their child is improving, it somehow takes away from the work the teacher is doing.

Thankfully, the games started so we were interrupted. I had no intention of getting into a heated discussion, so it was a welcome interruption. For me, it was enlightening — I had no idea before why teachers didn’t want to cooperate with the diet. I’d always thought it was the extra work involved. It never crossed my mind it was something as petty as resentment. Aren’t personal feelings supposed to be removed from the equation when it comes to teaching children? I mean, I know they’re not, but wow, the vehemence, the irritation towards the diet or anything biomed that could help the child. But, I don’t feel she was, and hence, he was enlightened. Instead, I think there was just irritation that yet another person felt that the teacher wasn’t the primary reason for improvement in an autistic child. And that’s just sad. It speaks volumes about why the different sections of the autism community can’t get it together and just agree to work together, letting each do their part and cooperating with only the benefit of the child in mind.

There are some great teachers out there, but until they all agree that we parents still know our child best, that they only see the child a small portion of his life and therefore need to listen to us, and that we are entitled to making the decisions about what a child needs and receives, there’s still so much work to do. There’s no place for resentment, irritation or hurt feelings when it comes to doing whatever it takes to improve our children. Even if something only helps one child, who is ANYONE to say it’s not a proven success? Isn’t that one child a success? Does a success have to be 100% of the time to count? 50% of the time? Who determines success? Would teachers be cool with us telling them how to raise their children? They’re there to educate our children, not raise them — vast difference. As long as school is mandatory, we’re a team and any good teacher will acknowledge that.

The more I think about this whole conversation, the more it worries me. We parents are supposed to be openminded and entrust our children to virtual strangers all day, but some teachers don’t trust us in return. It really does work both ways. Unless teachers are willing to truly listen and try to learn, we’re going to be butting heads for years to come. Don’t take it personally if parents don’t thank you for the GFCF diet improving their son’s bowel habits or removing rashes or stopping headaches; those aren’t your realm. A chid that feels better will behave better and may speak. It makes sense. You’re one important part of a big picture — if we can make it a co-op, we’ll all benefit.

If a parent talks with you about something, you don’t have to agree, but at least remember that you’re not dealing with the child 24/7. The parents are. They’re paying the bills. All of them. The diet, the biomed, it does more than help things that you’ll ever even see or hear about. Those hours with our child, it’s just a portion of the day.

I think we’re really, really lucky. We have an excellent teacher for our son right now, and we did the last 1.5 years. She works with us, and the more stories I hear about things friends deal with, or conversations I have like the one explained above, I thank God. Seriously. So to ds’s teacher, thank you. You are a blessing.

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Did you just hear that high-pitched scream? The kind that makes you wish you were only hearing nails on a chalkboard? The kind that makes dogs howl and cower under a bed? The kind that you think “wow, my kid’s tantrums don’t look so bad now.” That’s what just occurred here. We haven’t seen them this bad in a few weeks, and I didn’t miss them. Nope, not a bit. In fact, for a second, I was thinking “how did I ever deal with this all day every day?” Then he sat up with monstrous strength unknown to small children, and I remembered that this is why we decided to put him on medication. I couldn’t deal with it all day, every day, and neither could he.

I don’t know what is wrong that caused this. Well, I do know what caused his anger, but for it to get to that level? Who knows. On a ‘normal’ day anymore, finding his Gameboy case on a shelf other than where he put it would cause some annoyance and yelling, but not the “Curse you, Bubba, curse you!” that it caused today. This week, he’s out of school, had some Easter candy (though none since Tuesday) and there’s been a few dietary infractions…but this seems extreme for that. Then again, who knows. Maybe the dyes are still in his system from the Easter candy he ate on Saturday/Sunday. Yep, who am I kidding, I helped bring this on.

Right now, he’s calm…after he exploded, the extreme sadness and sobbing kicked in. The heartwrenching, saddening sobs that make you wish for anything that could stop your little one from feeling that sad. That out of control. That much hate. (And hate it was, based on what he was yelling.) There’s gotta be more that can be done, but we’ve tried behavioral therapy…a lot of it. At one point, we were told that without medication, he may never truly get a grip on it. Now that scares me, though I have hope.

During Autism Awareness month, I truly hope not just the non-verbal, handflapping children are in the spotlight. Not that they shouldn’t be, don’t get me wrong, but people need to see ALL types of autism. They need to see the aggression of little kids with strength of someone twice their size, hear the venom coming out of their mouths, and hear a list of what little is available to help. We can’t let the public think that there’s two kinds of autism: non-verbal, and Asperger’s. They need to realize that there’s a spectrum, and this population of kids like mine exist, in big numbers. They aren’t spoiled. They aren’t products of bad parenting. They aren’t lacking self-control..well, they are, but not of their own or anyone’s choosing.

So now he sits eating a milk-free brownie. My older ds is astounded by his brother’s complete and utter lack of an attention span anymore, and I am in a way, too. He’s never had a long one, but this week, he’s bounced from watching Wonder Pets, spreading Pokemon all over my bedroom, spreading stuffed animals (his friends) all over his room, starting to make a book, playing a round of Guitar Hero, and back to Wonder Pets…all in about 8.4 minutes. How is he not exhausted, but everyone in his wake is?

Life with autism is unpredictable. As the saying goes, “If you’ve seen one person with autism, you’ve seen one person with autism.” They’re all so different. Yet, ironically, they’re each predictable in their ‘issues,’ if you will. I know my son will get up and want his pancakes heated on a plate, stacked, then cut in two directions, then slathered in syrup. He wants his ‘coffee’ (chocolate almond milk) in his white cup with the blue lid, and placed at his chair. From there, on a non-school day, all bets are off, but I know it’ll be a whirlwind of activities, many odd, in a short period of time. I know if we talk quietly so as not to interrupt him, he’ll accuse us of talking about him. I know that if a show he’s Tivo’d is deleted, he’ll scream and yell that he’s going to beat up the stupidhead that did it. I know that when his sister gets a phonecall and he doesn’t, he’ll flip out that he has no friends, and we’ll have to limit his talking about no friends to three minutes, or we could fall asleep to that same discussion ten hours later and he’d barely notice, only to have to start the conversation over, verbatim, if our snoring disrupts. And I know that when he falls asleep at night, finally, and only after his clonidine helps, I’ll cuddle him and hug him and tell him he’s the sweetest boy in the world.

As I type this, my little guy is laying next to me, sound asleep. Almost snoring. All things considered, he’s done really, really well this week…despite the dietary infractions (blue and red dye, yeast-y foods, way too much sugar, forgotten supplements) and serious change in schedule and social events. But the stims? Out of control, with pulling his eyelashes being the most common. The only time he’s not doing it is when he’s playing Wii boxing! (My personal recommendation: buy a Wii. Sure, it can be isolating but with multi-player games, many that require working together, you get practice in cooperation, frustration, and motor skills. And low-muscle tone? Lots of good exercise!)

In a couple of weeks, we’re ramping up the biomedical therapies — casein-free, adding in some more supplements (starting with biotin) and more dietary changes. I’m spending hours reading about removing more and more toxins (cleaning products, toothpaste with unnecessary additives, etc.) from the house. New Year’s resolutions? Heck no, who has time?

In the past week, we’ve gone to more parties than I can count on my hands. We’ve gone to our Christmas Eve church service, where we lit the Christ candle, which required quiet standing at the podium for a few minutes. Score. He handled it fine, with only some minor squirmage going on. We took ds shopping. We took him to the infamous karate class. We also expected him to handle all this on less sleep, as we were up later at night yet not necessarily sleeping late in the morning. Through it all, we’ve had sporadic serious wind gusts. Busy-ness + less sleep + more transitions + shopping + lack of routine + WIND = recipe for disaster. And what do I hear outside my window right now? More wind. (We have yet to clean up the wreck that is our backyard. At least we won’t hear the crash as the 300 lb barbecue blows over again. And the Christmas decorations it ruined or came close to ruining? Still in the garage. All I can say about them is poor Snoopy.) Winds mean more irritability and less sleep. Then he gets to look forward to the root canal and crown on Friday morning.

Holidays and children with autism are never boring at least.

And, while I’ve got you — if you’ve got some excellent GFCF or just healthy cooking or green home websites that you love, please comment and share them! I will keep adding them to my blogroll, too. Merry Christmas!


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