Autism Watch: 2007

Posts Tagged ‘gluten free

First, I don’t really think that, but I was told again yesterday that if I didn’t try xxx on BB (for his autism) then I was a sheeple going along with the general public, just because my doctor said so. Well, I’ll be! Baaaaa-aaaaa. šŸ˜‰

After all these years in the autism community, I still get shocked at this mentality, the “I research, I talk about it, thereforeĀ  I am more educated than you” mentality. We’ve probably all run into that here and there. (Or am I just lucky?)

So many things are wrong with this picture. I won’t list them, because I have Valentine’s day cookies in the oven and quite honestly, don’t want to devote to much (more) time to nonsense, but the holier-than-thou attitude doesn’t fly well with me. I don’t go around tooting my own horn, telling you how many hours every day I research autism, how much I advocate for autism, or how many people I’ve helped; what’s the point of that? So just because I don’t tell you about it doesn’t mean that I don’t do it. So when you tell me that the new headache medicine I’m trying for BB is wrong simply because it’s not biomedical and instead is a prescription from the pharmaceutical industry given to me by a ‘drug-pushing’ doctor? You’re wrong.

Somehow this society has confused caring for another and looking out for their best interest with judgmental nosey-ness. There’s a way to share your feelings without putting down those who don’t agree or choose another path. You aren’t ‘better’ than someone, nor is your child necessarily any better off, so get off your high horse.

Just one of those days where I wonder why (not) the autism community can’t do something with the power of numbers: we can’t even get along with ourselves without inflicting the same judgment and nastiness the rest of the world inflicts on us simply because they don’t (choose to) understand autism.

Until that is fixed, we’re not going to make the change we want.

And with that, I’m off to get another tray of non-gluten free cookies out of the oven. (That didn’t work on my child, which makes me a pariah in some circles, imagine that. Autism isn’t bad enough, but because a remedy for only approximately 60% of the community doesn’t work for us, we’re fair game for questioning on that, as in ‘are you sure you did it right?’ It’s not rocket science, folks. But I will stop now.)

Happy Valentine’s day to all!

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 autismĀ 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.

TheĀ 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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