Autism Watch: 2007

Archive for July 2010

BB’s loud. I’ve probably said this before, but he’s frequently loud. He’s loud when he’s happy and loud when he’s sad. But when he’s mad, he’s LOUD.

He yells. He yells when we knock on his door, when we ask him to take his eardrops for his ear infection, when I tell him to pick out his clothes for school, and when it’s time to come to dinner.
We’re working on it, but it’s so annoying. He escalates into a fit, and if we push it too far, he cycles into a sobbing mess. Then it’s ugly. Then everything we say goes by the wayside, he doesn’t hear us. He can’t hear us.

What do you do about yellers? How do you get them to realize it’s not socially acceptable to yell at people who don’t do what you want? And what about when it’s mainly your parents you yell at?

Then again, I should be glad he’s not yelling at anyone else, right? At least he has manners in public. (The nurse called me yesterday. His snap on his new jeans..thanks, Sean White and Target, they lasted us one wear..had broken and he wanted a “freaking belt.” Luckily, I had warned her that his language gets rude when he’s mad. She wasn’t offended. She is a sweetie, and I’m glad that our new school appreciates him for him instead of seeing “here comes the pest.” Thank you, thank you, and thank you.) But I am tired of being yelled at.
In fact, right now? I’m just tired.

My son likes music. His music, the style he likes at the pace he likes and at the volume he likes. He’ll beat the drums when he’s up for it, and he likes the guitar. But music class? Not so much.

He’s got a beautiful voice. I sing, my sister sings, and both my daughters sing; we aren’t athletes, but we can belt a song and stay perfectly on pitch, so it’s not a surprise that he’s got this gift. I want to encourage it, but without overwhelming. After all, he’s got music class at school to do that for him.

I’m big on music being offered to all children. Music and art help the brain process other information more properly, and it’s also a stress-reliever. I want BB to take music class and come away feeling he’s learned something, and to look forward to it next week. So far though? Not so much.

Apparently the music teacher is not aware of his IEP, or “his issues,” for lack of a better word. That’s a problem we’ve run into frequently at schools throughout the years — people not being kept in the loop. They treat him like anyone else because they don’t know, and if they aren’t a patient person, he tests what patience they do have and it’s even worse.

BB wasn’t happy with music last year. He’d tell me then that he didn’t think she liked him and she was meaner than anyone else, which puzzled him. She’s still there this year, and I haven’t met her, but I also haven’t met a mean soul at this school, so it surprises me. However, his story doesn’t change, week after week, so I don’t think he’s embellishing. The drums in the class hurt his ears, and in his words, she “snapped.” BB had a headache and an earache when he came home, said his “tubes popped out” (impossible since they fell out in ’04) and he went at his sister (though she may have deserved it) like I’ve not seen him swing at anyone in a few weeks, so I know he’s on edge, and it’s likely the music class that generated it. Sigh.

I’m not sure what all transpired, but the Dh called and spoke with administration. All is good, I’ve been told, but I am looking forward to hearing the whole story. I want BB to look forward to music, and not dread the one day a week where he has it — which will ruin the whole day and take away from anything he tries.

What’s your thoughts on autism and music? Any special accommodations you’ve found that work or don’t work? Tips?

After we moved, we considered moving BB to the closest school to the house. We thought the shorter drive would be good for him, and that he’d meet some kids in the neighborhood to play with. We brought it up to him, but talked about how I didn’t mind driving to the current school, how he already knew the routine and teachers, and how there was no real reason to change. Dh and I are also happy with the services, so we hoped BB wouldn’t want to change and we never really had to consider it further as he said, “No, that’s okay, I’ll stay where I’m at.”

Phew.

Then he continued: “But if I mess up this school, I can go there, right?” He talked a bit further about switching schools but I was stuck on his first comment. No small child should have that worry. What pressure he’s put on himself!

After I absorbed his worry, coming up with the best response I was able that didn’t dismiss his worry but didn’t lead into it further was a bit hard but I think I managed. I hate that he has to have a back-up plan, as he’s not a bad kid. He’s just got autism.

“Just” autism. Doesn’t sound right, but he isn’t an unruly child causing problems. He just is afraid he’ll mess up socially, the kids won’t like him, and he’ll end up branded as the child no one plays with, just like our old school. I wish I could go back in time and face up to the parents who told their children to not play with him. I wish I’d swung my finger in the face of the neighbor who told people he was a problem. (I did face up to one of the neighbors, but it was a losing battle and I had to worry about my child instead of a narrow-minded adult’s problems.) He shouldn’t have to worry that people here won’t like him, but when you haven’t been invited to a birthday party in so long you can’t remember, it’s an important thing to a kid.

Don’t worry, BB. This school won’t turn out like the old one. If you do switch, it’ll be because of something other than social issues, Mom promises. And moms don’t break promises.

I’m back on the horse…I think.

BB goes back to school on Monday. We’ve been in the house almost two months now, and we’re done unpacking. Renovation projects aren’t a daily thing (though we’re still working on a few smaller things, all cosmetic) and errands take half as long now that I don’t have to pull out my GPS every time I want to go somewhere. The garden’s still producing but not to the point where I’m canning or chopping endlessly. I’m back to my studies and workout routines, and I have hopes of school helping BB stay in more of a routine. Hopes.

As a result, I hope to be back to blogging more normally. If you ever plan a cross-country move, where your husband quits his job and has to find a new one, and you have to get your kids and pets and belongings from one coast to another, plan on things taking longer than you thought they would to calm down. A lot longer. Looking back, it’s only been a little less than four months but on the other hand, wow, it feels like a whole new world.

Today I have no titillating stories to share, no sarcasm and no areas where I can speak out against something…imagine that! 😉  I do want to share though that I took BB out to lunch yesterday with a friend and children, and he did AMAZING. The most polite little man, the sweetest, and social though it was a little loud at times and his eye contact wasn’t so hot. But I was SO impressed, so proud and so encouraged.

Other than that, on with some recent autism news:

The Utah News reports: Quality of Life for Autistic Adults Subject of New Study. This is a longterm study of 400 children and not entirely inclusive or surprising, but interesting nonetheless.

Age of Autism: New Study Shows Vaccines Cause Changes Found in Autism. I’m sure the only news play this will get is people ripping it apart.

MyFoxDC.com reports: Autistic Teen Jailed for Officer Assault. This one just proves that the authorities need more training so that they remain safe while also working more appropriately with disabled people. (Though the question of how they know an adult is disabled in an ‘invisible’ way is always going to be difficult.)

DisabilityScoop.com’s got another interesting one: Advocates Urge Congress to Address Growing Needs of Adults with Autism. So true.

There are so many good blogs out there about autism, I would be hard-pressed to choose some to highlight, but I think once a week, I’m going to try to do that. (Now I just have to remember in the rush of the first week of school that I said that!)

Have a good weekend….

Just to start out, I’m going to say no. Categorically, no.

I’ve been a part of the community now for almost six years. I didn’t want to be a part of the community, but I am. On most days, I’m glad to be a part of it — it got me through some very difficult days, I’ve made some wonderful friends (online and offline) and I continue to check in for resources and to get/give support as necessary. On other days though, I’m disappointed.

If you’ve read my blog at all, you know I speak my mind. Autism tends to do that to you. You don’t have time to mess around, so you get around to the meat of the issue or you just walk away and leave it because you have more important things to do. For a while now, I’ve just walked away because I have, like everyone else, a busy life, but there are times when I shake my head and sigh and think “What a shame.”

A few years ago, I was being included in an article about autism, parenting, and alternative autism treatments. I was excited to be part of it, because I really believe autism is not displayed to the world for what it really is.  (More on that later.) I also wholeheartedly believe in biomedical treatment for autism, be it whole hog GFCF diet and a bunch of supplements or just the addition of a healthy vitamin and removing dye from a child’s diet. I readied for my interview, and on the day it was to take place, received a call notifying me that we weren’t going to be able to be included. What? I fit the requirements of what you were asking for — I’m a parent of a child on the autism spectrum who is receiving biomedical treatment living in a certain locale, and my child is a male within the required age-range. How did I fit before but not now?

I was surprised at the answer: “You aren’t biomedical enough.”

Really?

First, what is “enough?” Secondly, why didn’t requirements list that up front, and probably most importantly, (thirdly?) why isn’t your article showing people that you don’t have to be GFCF, anti-yeast, seven daily supplements, chelation and HBOT to actually have biomedical success? Why is only the extreme being included?

They didn’t give me a good answer, but I gave up. This was when life was even busier now, as my child was younger and his issues were worse, and I didn’t have time to fight every battle. I wish now though that I had.

Much of the autism community longs for acceptance by the rest of the world. We push for it for our children, and we want mainstream medicine to give credence to our feelings and facts. We just don’t give it to each other. We aren’t doing ourselves any favors if those ‘facts’ only include only those that are the worst, only those that are the most extreme, or only those who make for the best media interest.  We don’t like it when autism research is ripped apart and nitpicked, yet are we guilty of it ourselves if we don’t allow for all those on the spectrum to be represented?

At the time, my son was taking a multi-vitamin designed for children with autism, was casein-free, was on an anti-yeast protocol and zinc for a mouthing/licking tic. And he was improving. Shouldn’t that have been enough? Then again, I heard then (and still do) from other parents that he should also be gluten-free and on a bunch of other supplements. We can sure be the harshest support system ever.

Another case in point: many autism segments on television shows, movies or news segments include the same families and usually severe children. My beef’s not with seeing the same people — they have the right to participate in whatever they choose — but what about the rest of the world? Are they not volunteering or are we just using the same spokespeople over and over because they make a bigger impact? How does one get ‘in the loop’ to be included so the general public can truly see the variance in autism? I won’t go so far as to use the word “clique,” which I’ve heard it referred to numerous times, because I’m not sure what the cause is, but the world is full of amazing autism families, and the same few are the only ones that will ever become known to the world. I also feel strongly that mildly affected children should be included as well as moderate and severe. Maybe it’s because I’m tired of hearing “really? Your son has autism? I couldn’t tell” because they don’t know enough about mild autism and therefore, they don’t think “hmmm, maybe he has autism” and instead think “What a brat.” Or maybe it’s because there are so many parents out there not getting their own children the help they need because the kids they saw in the piece about autism on last week’s news show all were non-verbal and very obvious developmental issues, tics or other obvious things. Probably some of each, and a few other reasons, too.

The next charity autism mini-movie that I see, I’d love to see it include those with Asperger’s who are so desperate to have friends that they would do anything to fit in but don’t know how, some verbal autistic children who are grades ahead in their class at school but can’t handle the blinking lights in the classroom, the children who aren’t potty-trained but are vocal enough to tell you their feelings on being teased for their diaper, along with the non-verbal children who stim and spin and hand-flap. That’s the real autism community, from one end of the curve to the other. It’s the very real spectrum, and maybe it won’t grab hearts as much as just the extreme kids, but why not show it like it really is?

There are awe-inspiring people in the autism community, and I’ve been lucky to meet many of them. When I need some help or want to share something I’ve learned, I’m equally lucky to know that they’re there. But I think we fall seriously short of equal representation. We want to show our worst, our noisiest and our most renown — it makes for better media. But does that make it better in the long run?

For the quiet, unknown moms, dads and children  in the autism community, the ones who aren’t online much and are working just to get through the day, you deserve the covers of magazines, the spotlight in a news piece, or the focus of a written article. I can’t give it to you — just a small blogger who probably speaks her mind too much, but I wish I could.


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