Autism Watch: 2007

Posts Tagged ‘diet

I had an IEP yesterday afternoon. Lately, these IEPs have been pretty standard — we know what’s going to be discussed, we laugh a little, we agree on further services, sign the attendance sheet, and leave with the IEP paperwork to review once more together, at home, before we sign. Pretty simple, especially given that our school is up-front and offers services without hassle. Dh couldn’t go with me, and I wasn’ t worried; I figured I’d be in/out in less than an hour and we’d go on as usual.

Just when you least expect it….wham, the punch to the stomach.

First, the teacher came in to meet me early. I like the teacher, she’s good for him, and I trust her, so when she laid out several issues he’d had yesterday, I believed her. Then she started talking about Tuesday…then Monday. Then another teacher came in and added to it. Then the special ed. director/teacher concurred as she’d seen it. They were very nice about it all, and their approach was fine. It was just that the information, the surprise of it, was a bit…overwhelming?

I know my son has social and behavioral issues. I love him to pieces, and we work daily to fix things and help him improve and learn how to be independent and function in the world, but when you hear there are more issues, or things are worse, it’s still difficult to hear. That’s when I got butterflies and started to do the smile and nod. It wasn’t a ‘how funny!’ smile, but a ‘yes, I’m listening, thanks for sharing’ kind of smile. The kind of smile that signifies I’m holding together just fine, and am rolling with the punches. Inside, I’m sighing and wondering what the heck just happened.

The questions came, and I didn’t have any good answers: had there been a recent medication change? (No, he’s on no meds.) Had there been a dietary change? (No, we eat primarily homemade healthy food, same as always.) Had we noticed any change? (Yes, we’d noticed a few weeks ago that he was more active, his attention span was shorter and he was having more mood swings and control issues.)

While I already knew he was hyperactive — ADHD often goes hand-in-hand with autism — and I knew he had social issues, to hear that he’s now acting out in order to fit in, that he’s trying harder to manipulate situations in an attempt to control his environment (not necessarily to be devious), and that he’s showing lack of focus, lots of fidgeting and difficulty getting and staying on task, well, it was a lot to hear.

New and increased services are in place, and we’re working with the school to be sure we’re consistent and employing the same tactics and strategies at home. Bigger picture, we’re revamping his diet, which is a real challenge as he already eats pretty darn healthy. We’re working on solving his intestinal issue, trying another round of anti-yeast protocol, and seeing what we can do to decrease his level of activity as well as eliminate his headaches…all without medication.

Not sure where to start, but away we goooooooooooo………..

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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.

My son’s big on routine. Sameness. Repetition. Familiarity. It all holds true with his diet, too. I’ve mentioned in a prior blog entry how food is a huge issue for us. He has a limited set of foods he’ll eat, and those foods need to be prepared the same way, too. (Only pancakes for breakfast, cut a certain way. Only a turkey or ham sandwich for lunch, no cheese, no mayo, just mustard. And no crusts.) Dinner is our experimental meal of the day. Because I have to cook for at least six of us daily, I don’t have the time to cook two meals — nor do I want to — so we try to get him to eat what we’re eating each night, some with better success than others. He’d eat chicken nuggets nightly if we let him, but only if they’re not crispy. (He’s got issues with smells and textures, and has been known to gag up many a bites of food and never look at them again.)

So, what to do? Each night we try to get him to try what we’re having. I made gumbo on Wednesday night (homemade, and may I say it rocked?) and for his bowl, I picked out the green peppers. I also didn’t use onions and very little spice, just enough to be tasty for everyone but not too ‘spicy’ for him. (Everything that tastes odd to him is ‘spicy.’) He ate it! He loved the rice, sausage and chicken. I tried to get him to eat some leftovers of it yesterday, as I was out late through dinner and suggested dd give him a bowl of it, but he wouldn’t try it.

If he eats something one time and it’s bad, chances are, he won’t try it again. He’ll shy away from it faster than you can say “I’ll make you more chicken nuggets!” We’re a non-red-meat household, so we eat a lot of meals that include chicken and ground turkey. We cook pretty well and can be creative, but with him, creative in the traditional sense doesn’t work. Instead, we need to be creative with food preparation in a boring way. Same ingredients, different ways…and every now and then, we throw in something different and hope he goes for it. He’s got a nose that beats most any I’ve seen, and he senses out a different smell, and taste, before the fork gets to his mouth….holding half the food initially on the fork before it left the plate and the ‘non-messy zone.’

I’m going away to the conference this weekend, so I am curious how things go with dh and their meals. Dh can be great at persuading him to try different things….but ds is really stubborn and too much pushing can result in a nightmare of a meltdown. Seen a few of those this week, but at least the bitemark faded!

So how do you introduce new foods into your child’s diet, especially if you avoid certain items? How do you get him to eat enough, and is only eating a few things a big deal, other than trying to find ways to make sure the diet includes proper vegetable and fruit amounts? Without anyone going crazy? 😉

You poor thing! You don’t have to finish that. I don’t want you to have a sickness, by all means throw the rest away…after you stop gagging.

You’d have thought it was brussel sprouts. What was it? A chocolate covered donut.

My son’s feeding issues have returned with a vengeance. Years ago, he ate 8-10 things without complaint. Then it increased, and he ate much better, though still with sensory issues — he’d gag easily, as textures really bug him, smells would bother him, and he was very limited in what tastes he wanted. Chicken nuggets have lasted throughout the years, and pizza’s a favorite the last year or so. But lately, he’s back to only wanting pancakes for breakfast, a turkey sandwich (no cheese, just mustard) for lunch, along with a selection of several snacks (like certain crackers, grapes, homemade cookies) and every dinner he wants chicken nuggets or pizza. Everything beyond that is a battle. He gags, wretches, whines, complains and will run and hide if made to eat anything else. Part of it appears to be the food, and part appears to be just the act of sitting still.

So, I didn’t say a word when the donut went in the trash, and I happily heated up his pancakes knowing he’d at least have a full tummy. But, in the end, what to do? Are food issues a problem with your child? I’m open to any/all ideas on increasing my son’s interest in food and getting beyond some of these sensory issues.


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