Autism Watch: 2007

Posts Tagged ‘borders

I whined yesterday about all the things going on, but once just isn’t enough. Be warned.

Awards event at school yesterday, and ds was unnecessarily upset (not his own fault, imo) by a technicality. Sometimes I really wish people would understand how important these things are to ASD kids. Little upsets that just aren’t worth the fight can ruin an entire afternoon. And this did. I’ll leave it at that, but I just want to be like other parents, go and watch something and have a smiley child who is enjoying himself. Heck, I’ll forego the smile, I just want him to enjoy himself.

With no respite last night, I had to tote him along with me to Borders. He didn’t want to go, but the bribe of a chocolate chip cookie was too strong to ignore. But..and this shouldn’t surprise me, given how our week is gone..Seattle’s Best was out of chocolate chip. They had some delicious looking other flavors, but no chip. Oh no, he’s getting anxious. Oh look, a bakery next door. Run across the street, find the cookie. Crisis averted. We find Jenny’s latest book on the “new” shelf, pay the cashier (feeling the ridiculously increased tax hike for the first time and nearly cry…if I feel it on a book, what about when I shop for clothes for the kids or order his new supplements??) and enjoy my non-fat Blackberry Cream Latte. The little things in life. I was trying to keep ds calm about his cookie, then realized: would I be upset if I couldn’t get a coffee right then? Probably.

I am exhausted. I am so thankful it’s Friday. I’m not sure if the weekend will be a relaxing one, it’s too early to tell — as in, I don’t know until five minutes beforehand, and sometimes not even then — but at least I won’t be throwing work into the mix. I’ve been working earlier most days anymore, so I can be sure to put in my time around any issues with ds. It’s do-able, but when you dream of being chased by scary dogs, when ds isn’t coming into your room due to another nightmare, sleep is fragmented.

Today we’re going back to Kirkman’s chewable multi-vite. Ds isn’t currently GFCF so it’s fine. We saw the biggest improvement on it, but he hates the taste. I am not a walking checkbook, so I’d like to get him to use this bottle before I switch to a liquid or other version of it. I’m also starting him on double S. boulardii, a good probiotic to combat the yeast that’s probably built back up in his system. We did an anti-yeast protocol around 18-20 months ago and it was fantastic but it can return so it’s a good time to try again.

And, because it’s fun, ds is home from school again. Okay, it’s not really fun but you gotta laugh to get through the neverending stuff or you’ll go crazy. He woke up at 5:40am and said his leg is burning. No swelling, joint is fine, but it hurts to touch. What now? He’s near tears, and when he’s not looking, we tested it by touching the leg. OUCH!! So, a new symptom added to the mix. We’ve decided that it’s time to go back to no dietary infractions: all homecooked/homebaked stuff and no dyes. (Dad bought him Fruit Gushers earlier this week, which to me is just a big package of HFCS and dye, but Dad was giving in to a sweet boy who’d already had a lot of stuff going on and really wanted to try the gushers. Who knew.) He also had a couple of processed foods, like pizza pockets. Yanking those out of the diet too. He was already acting odd/off by then, with the lip licker’s dermatitis and headaches, so at least we can’t blame those on bad food, we really are careful with his diet. But this leg thing has thrown me for a loop.

It’s a rainy day here, so I’ll be getting the fireplace going shortly and will make it a snuggle & cuddle day. We got AT&T U-verse installed, so he can watch anything he records on any tv, and he’s got his own tv in his room. Well-worth the cost. (And the money we’re saving over our prior services is a good thing, too. TV, phone and high-speed internet together is way cheaper.)

Enjoy the weekend. Not sure if I’ll be blogging or not. I do have to say I’m disappointed I saw so little about World Autism Awareness Day, other than some online mentions in the appropriate autism-related places/communities. Nothing on TV or on the news. I guess it’s less important than what the latest loser celebrity is doing or other ridiculous news stories I did see on. Shows you where our priorities lie.

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First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!


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