Autism Watch: 2007

Posts Tagged ‘GFCF

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.

No, not you. My son. Sorry, I’ve said it so often lately, it just comes out at random times now. I probably yell it in my sleep.

The last week has been a week of increased temper tantrums and meltdowns. All I have to do is say meltdown, and anyone with an autistic child understands, so enough said.

So what to do?

New autism program is working, but maybe we’re not doing enough. New supplements needed? Social skills training?

This past week, ds had testing at his karate class, to see if he could earn his yellow belt. Talk about painful. Other parents are laughing because a cute little boy was pirouetting (word?) between blocks and kicks, pulling at his upper lip and rubbing his hair and face every movement. They didn’t know they were laughing at a little boy in his own world, completely lacking focus and only listening enough to knock out the move and go back to his internal choreography. Dh blows it off, but I don’t want to hear him laughed at, even if I know they weren’t laughing to be malicious. Today, ds and I attended a birthday party for a wonderfully sweet and compassionate classmate of my son’s. Ds had a meltdown, and parents of children not as old as ds witnessed it. Sigh. So hard. Ds was on the floor and against the wall, in full pout-and-crossed-arms-yelling mode, and I was trying to calm him in front of 20+ other people. Thank God, birthday boy’s mom is one of the rare few who doesn’t judge; she helped me out but an understanding mom, not a lot of sleep and another social event where he stands out, in a negative manner, made me tear-y. So now you have Meltdown Boy and Emotional Mom.

Ever have one of those days?

We also went to Disneyland again on Wednesday evening, for dd’s birthday. The big 13. California Adventure closes early during the week right now, so we visited there first to ride Tower of Terror. Ds loves it. (And our occupational therapist encouraged this type of ride, if he likes it.) A quick visit to Guest Services, dd had her happy birthday pin, and ds had his special guest assistance pass. We headed to Disneyland after the ride, and went on a number of rides in a short period of time. Lines were short, but given ds’s mood, we still used our pass because I’m not sure he could have done even the shorter lines. We used his stroller (a larger-sized jogging stroller), worth its weight (and cost) in gold.

We made ds’s orthopedist appointment. It’s several weeks from now, but we know the ortho. She dx’d ds (pre-autism dx) with pronated ankles and flat-feet. His orthotics didn’t work, and years later, he’s still got the leg pain and muscle weakness. We’ll see if the ortho can help us figure out why, and what to do.

And on a good note? Ds got his yellow belt! He passed! All in all, very busy week for a little guy that’s easily overstimulated. And I wonder why he’s having such anger issues.

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 themĀ 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!

A bit of a different blog entry today — I wanted to take a minute to high-five Disneyland, especially since Knott’s Berry Farm and Magic Mountain have decided that autistic people don’t rate enough forĀ special accommodations that actually, well, accommodate their needs.Ā 

Ds has wanted to spend his birthday at Disneyland all year. We did it last year, so that started a tradition. We are annual passholders, so we go every few weeks but there’s something special about going for a birthday celebration. Disneyland manages to make it fun for the whole family, and today was no different. When we arrived at California Adventure, we easily renewed our guest assistance pass (thank you, Disney, for keeping that process painless and quick) and ds became the proud owner of a pin that announces it was his birthday. Huge smile on his face. To him, that button alone was a special pass. Then the guest services representative handed him the phone, where Goofy wished him a happy birthday. Even huger smile. (Huger=my new word for the day.) Then it was on to Tower of Terror, the first of many rides.

Fast forward hours later to our visit to Woody’s Reindeer Round-up by Thunder Mountain Railroad. Decorating, then eating, the huge sugar cookies is something the kids look forward to every holiday. There, and everywhere we went, Disney staff was telling ds “happy birthday!” Stuff like this, something that seems little, really does make a big difference.

Every ride we went on had a line of sorts, so the ability to avoid those lines makes the day possible. Without it, we couldn’t go to Disneyland. (And because Knott’s and Magic Mountain don’t have this, Disney’s got a very loyal fan base of families with autistic children.) We do want to teach line-waiting skills, but there’s a time and place for that, and a crowded amusement park is not the place. Children with autism deserve the opportunity to have fun, like every other child.

So where does the cotton candy come into play? Ds loves the stuff. Has to have it every trip. You know autistic children and routines, repetition, sameness, etc. Sometimes it can be hard to find when you need to, but today was the worst time we’ve had yet. We’d forgotten that with the 8pm closing, 7:45pm fireworks show, and several other earlier shows, half the park would be inaccessible, with booths/carts shutting down or moved out of their normal place. We asked a lot of Disney staff, only to get conflicting suggestions on where to find it. I finally stopped a woman who was carrying it — she didn’t want to even talk to me and tried to get away, but I was a mom on a mission, and I didn’t think I was asking much of her to point me in the direction of the cotton candy cart. Mission accomplished, though dh had to run and just made it in time before the cart rolled away. Extra exercise to burn off the Hefeweizer from lunch, right?

Next visit, the cotton candy’s being bought first time we see it, and stuffed in the stroller storage until it is time.

Onto other things — we’re gearing up to go casein-free in January, and maybe even gluten free, too. I’d love to go fully GFCF, yet we’re not sure. Before someone flames us for at least not trying it, fyi, we did. Almost three years, GFCF for several months, with only a minimal improvement, and even then, it was temporary. While I fully believe in GFCF and biomedical treatment, I also believe that as a community we need to be understanding of each other, which means not being dismissive to those who don’t believe the same things. I’ve asked a lot of questions on aĀ lot of lists over the years, usually with wonderful results and great support I get nowhere else, but there’s been a few who refuse to answer because we’re not 100% GFCF, or because we’re not chelating. I hate to see more stress added to the load of parents of autistic children because one side thinks they are more ‘right’ than the other side. Why have sides? Why not just one big group of people with diverse opinions and respect for everyone?

Anyway, back to my point — kudos to Disneyland. We will continue to be annual passholders as long as Disney continues to be truly accommodating to guests with autism. We will speak with our words in praising emails and blog entries, and with our money by purchasing Disney gear. We’ll continue to tell everyone what a positive experience our visits are, and how happy our little one is at each visit. We can’t say that about everywhere we go, and let’s face it, ds doesn’t want to go everywhere. In fact, he wants to go few places…and Disneyland is one of them.

And last but not least, pray or think happy thoughts for us. Ds’s birthday party is this weekend, and rain is forecasted for later that afternoon. If we can get at least enough rain-free weather to have the bouncer for some of the party, we will be satisfied. Ds is counting on the bouncer. And at this point, still not even one R.S.V.P. out of all 21 kids in his classroom. I will be talking to his teacher tomorrow to find out if it’s true that kids are saying they’re not coming, or if it’s just a case of parents not realizing the R.S.V.P.’s still are helpful. I would much rather it be the latter, because my little sweetheart deserves a party, and compassionate friends to at least visit. (But compassion is lacking in the world anymore, and less and less is it being taught to kids.) I can deal with no R.S.V.P.’s — I can’t deal with no guests. I’ll update later.

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