Autism Watch: 2007

Archive for June 2009

I see it a lot — total immersion, 24/7, in autism. All discussions revolve around autism, even during the precious hours where the child’s happy/sleeping/calm. Even if/when mom and dad have quiet time together, thoughts focus on autism. There’s no break, just autism: behaviors, issues, research, treatments, therapies, news articles, shows, radio speakers, seminars, doctors, therapists, providers, the list goes on and on.

I remember back when my son was diagnosed. It was a 24/7 job at first. I didn’t know anything about autism, and I had a lot to learn. I also had a lot to set up, like his new set of medical professionals, schools, Regional Center services, biomedical treatments, not to mention getting our house more autism-friendly for him, for his therapists, and for us. However, after a while, it had to change. I realized it was taking up my whole life. My determination to help my son was taking center place in our lives, the lives of everyone in the family, to the detriment of time with my husband, my other kids, everything.

The need to help my child, of course, is how it should be. I should, as his mother, be his biggest advocate. But, to do that properly, I also need a little bit of time to be me. I need time to be a wife. I need time to be a mom of the other kids. I can’t do that if all I’m doing is looking up the latest autism news, spending hours on the phone lobbying for some law/bill, writing checks to charities, or sitting at meetings listening to what our government, school or other entity is planning to do or not do for our kids. It’s just plain not healthy.

Now, I am still my son’s biggest advocate, along with my husband. We’ve just found a better balance than before. I stay on top of the latest in all things autism, while still taking some time to make a pair of earrings, experiment with a non-GFCF dessert, and read through a magazine about food and wine and travel to places I’ll likely never go. My scrapbook stuff isn’t a dusty mess, and I found I’m pretty good at Wii bowling. I can do all this while writing a check for a chosen charity and contributing something to the autism community.

If you’re one who is constantly sending me something that I should write about, call about, fax about, send money for, or attend to ‘show our solidarity’ or ‘speak up on the behalf of our children,’ don’t assume my lack of response is lack of doing anything. Don’t assume you’re doing so much more than me because you don’t see what I’m doing. I just have other kids, a marriage I want to sustain, and a job. (After all, living on one income in Southern California, having four kids who want to eat, have medical coverage and attend college is darn near impossible.) I tire of the haughty attitudes I’ve encountered several times because I’m unable to afford all the time necessary to ‘make change’ and still actually parent my children, particularly the child who needs my help the most.

Anyway…if you’re having a rough day or feeling depressed, I think that’s normal. Our lives are stressful and challenging and exhausting. But, step away a bit. Share something on your Facebook that’s not autism-related. Watch something funny on TV or play a silly game on the computer. Even just a few minutes not devoted to autism will make you feel better.

I don’t know if it’s just me, but lately, I’ve been really hesitant to join or post to autism e-lists too much. I know people are having a lot of bad days — myself included — but we’re not a very forgiving crowd at times. We want everyone to understand us, but we don’t necessarily extend that to others in our own community. (Much like my church, but I won’t digress.)

I’ll admit, I don’t always carry the party line. I’m a working  mom, which isn’t necessarily easy. I don’t agree that we all deserve governmental money to support our children when they’re in school all day and we could possibly work. I don’t agree that we should complain about every decrease in our free money if we’re still getting a pretty fair shake. (Personally, I’d prefer to give up the Starbucks than complain about the decrease in IHSS here in California.) I don’t think that a disability means my child should get free summer camp or other stuff not deemed ‘necessary’ when parents of neurotypical kids have to budget to make it happen, or not have it happen at all. Don’t get me wrong — our kids deserve all therapies that will help them, but I don’t know if summer camp and swim lessons are therapy.

Anyway..if you share an opinion that’s different, you’re often blasted. And not in a nice way. Another example? My son’s on medication. He had (has?) self-injurious behaviors that are very dangerous to himself, as well as severe mood swings that very adversely affect his daily living. On meds, the therapies we provide (keyword: we — because we are a two-income family, we have to pay for much of ds’s help on our own. Fair? Heck no. But what is?) have a chance to work. Without meds, well, we won’t go there. For us, meds are important. They are necessary. Sure, they aren’t necessary for every kid, nor do they work for every kid, but does it mean my kid shouldn’t be on them? Does that mean that I’m uneducated or lazy because I use medication? No way, yet I’ve heard that several times. I’ve heard that I need to read up on side effects, as though I haven’t. Ha.

Back to my topic.

Today I asked a question somewhere else online. A simple question trying to understand something, and the response I got was several curt sentences, as though I am stupid, punctuated with exclamation points. To quote Steve Martin, excuuuuuse me.

We can be a really tough crowd, high expectations of the way people treat our child or look at us, but not so forgiving with people that don’t agree with us or ask questions or point out a different side. It almost makes a person want to walk away…which plays into the whole ‘why isn’t the autism community united?’

One day on most autism lists will give you that answer. Spend a couple of hours in a meeting, and people are a little nicer because they’re face-to-face, but the gang mentality can still take place. We want tolerance, but we don’t give it. And we wonder why the general public doesn’t tolerate our kids.

I belong to a couple of groups where I interact with a lot of other parents of autistic children. While my son would be called “high functioning,” if we used the term, we mix together because so many of the basic elements of autism are there. The difference is severity and level of improvement. Some parents struggle to potty-train their children and get them to eat, while others struggle to get their child to stop using potty language when mad or to eat more than just a boxful of waffles cut a specific way with a certain kind of peanut butter, then syrup, on them. At times, our worlds couldn’t be more opposite.

We began to get our son help at an early age, as soon as we knew that we were facing an actual problem as opposed to just being different due to a premature birth after a difficult pregnancy. We’ve tried a litany of things since then, and each day, we work on more specific issues: not expecting immediate gratification, not melting down over little things, not having to control every conversation, eye contact, remaining verbal when upset, etc. Our son has shown such vast improvement in the last four years, I wonder at times if I took him to a new doctor and said “not sure, something’s just different,” would he still be diagnosed autistic?

A friend of mine told me a few weeks ago that she doesn’t believe autism can be cured. Well, neither do I. The word “cure” is pretty strong stuff. I think a child with autism can definitely be recovered though. And to do so doesn’t mean he/she was never autistic. Dh and I had a long talk about this, and we came up with our new terminology for BB — he has “Induced Autism.” To us, it’s different from the classic/severe autism that results in non-verbal children who are not able to function at an independent level and who see so much less improvement from the daily treatments.

If I was nervy enough, I’d say it was “Vaccine-Induced Autism,” but I’m not sure if that’ll result in getting the blind eye turned on me whenever I say it. So, I’ll stick with “Induced Autism,” meaning it was caused by something other than genetics. Some toxin, vaccine or other thing injected/put into his system that his body can’t handle. To me, that isn’t negating the heartbreak that the family of a severely autistic child faces by way of not dealing with the same types of daily living issues we do — I can’t fathom that, and I feel bad sometimes saying “autism” about my child who so clearly speaks well and looks ‘normal,’ whatever that is, a lot of the time. (The good thing? Almost anyone that’s had a little time with us, long enough to say he looks ‘normal’ is around us long enough to later see one of the meltdowns or issues and agree ‘ayep, something going on there. Definitely.’)

I do hope that one day, classic/severe autism and high-functioning autism are separated more clearly. My son, four years ago, was a checklist for autism, tick, tick, tick, going down the list, checking off things that fit. Now though, with so many years of learning, therapies, supplements, you name it, behind him, not so much. To see him in a class with other autistic children is like seeing two extremes, and I’m not sure it’s fair to either.

So from now on, it’s Induced Autism. I really believe his autism was caused by something that his little premature body just couldn’t deal with. What, who knows..a vaccine, probably, but I’m not sure that’ll ever be proven. I just know that he fit the autism criteria to a T four years ago, and with a ton of help, he’s way better than he was. We’re extremely fortunate, I know that, but I do believe it’s not just because we’re lucky. I think his autism isn’t going to be found necessarily in a gene but in his immune system, his intestines, and the way his body all handles the intrusion of something unwanted into his body as a fetus/infant/toddler. We’re just dealing with a different kind of autism, and it requires different help.

It has started already. School isn’t even out until Wednesday, and already he’s telling me he’s bored. The mom part of me is thinking “Bored?? BORED? You have a room full of games, toys, stuffed animals, video games/machines, TV, computer, books…..” and so on. The mom to a child on the spectrum part of me is saying “Breathe. Count to ten. He will find something to do shortly.”

Part of the challenge is getting ds to be willing to try different things, to pull out dusty toys, some still unopened, from his closet. The other part of the challenge is for me to develop some patience. I am definitely a much more patient person than I was pre-A (pre-autism) but I still think I have miles to go. I work from home full-time. This means meetings, phonecalls, and tasks on a regular basis. Ds aka BB needs to be able to keep himself occupied more than he’s done in the last week — which is weird, considering that he was getting much better until then. I’m thinking he’s already picking up on the lack of structure, something he thrives on. At school, transitions could be difficult but having a schedule is a huge help for him. (One day, a few years ago, pizza was delivered early to a class holiday party so the teacher wanted to have pizza before recess, instead of after. BB went ballistic, and the schedule had to go on as had been previously announced. Crisis averted.) Yet, having a schedule at home is not only difficult, but life doesn’t work on a schedule 24/7, so I’m not sure that developing one for his ‘free time’ is in his best interest.

Right now, he’s got all 158 Pokemon animals scattered throughout the dining area and office. I hear his little sounds as they ‘battle,’ and he’s literally spinning on the wood floor. He’s happy, and I’m thrilled. Five minutes from now? Who knows.

Things look good, they appear fine, ds is playing quite happily and I’m enjoying the sounds he makes while he battles with 138 stuffed Pokemon animals in the diningroom. His “playroom,” if you will. The diningroom hasn’t been used in, hmmm, six months? At least? I think since our Christmas open house.

Anyway…he’s keeping himself occupied and I’m able to get something done. Then suddenly, out of the blue, I hear moaning. Mooooom-mmmmmmmy. A very whiny plea for me to come to him. At first, I used to run in. What’s wrong?? Now I walk, sometimes with a sigh, because I never really know what is coming next and how long it will take him to move onto something more productive. I get to him and find out that it’s awful, it’s horrible, he can’t walk…his toe hurts. Other times, he is so hot, we have to put a wet paper towel on his back, like a cape. (He hates to wear shirts so they come off as soon as he’s home.) Thing is, he’s not really hot. He just feels that way. I got a call from the school nurse on Monday. He’d visited because “My hip hurts, I can’t run, the doctor says it’s swollen, like my mom’s.” First, I have bursitis in my hip from running too many 5-milers on an incline. Second, he hasn’t seen a doctor for any injury nor did he go with me when I went. I explained this to the nurse, we both got a little laugh (shhh, don’t tell bb) and I told her that if he returns and asks for pain reliever, yes, he can have one. We have a bottle on hand for his headaches. He hates to take it, since we have to break it in half or he gags, so I know if he asks for it, something really hurts. Problem is, what?

As I’ve said before, bb is very verbal. But, speech isn’t communication. He views stress and anxiety as physical ailments at times, and finding out what’s really wrong is like pulling teeth without novocaine..for him and us. Not only am I going to focus on social skills over the summer, patience in waiting on something he wants (instead of an immediate response, even if we’re discussing something or using the restroom) but I’m going to work on learning what he feels, to distinguish between a physical feeling and an emotional feeling. Any suggestions?

Today’s park day for his class, but the thunderclouds are booming though the rain stopped. Not sure if they’ll have it, and not sure I want to spend 1.5 hours in his classroom instead. (Parking alone at the school is a nightmare.) Wish us luck!

Yep, two posts in a row. Unheard of!

We are huge Nascar fans. Huge. I think I’ve shared before how it’s a family interest, with everyone having a driver and getting into it on their own level. Ds doesn’t do well for long — too loud, even with headphones — so we only take him to qualifying when it’s local, but he will watch here and there at home, cheering for Jeff Gordon. (I know, I know, we are not Gordon fans, we are Jamie McMurray fans, all the way down to the custom-made gold crown belly ring with amethyst tips that I wear. Yes, fanatics.) We were excited to see that another race was sponsored by AutismSpeaks, held in Dover, DE yesterday. I am not a fan of AS, I’ll be clear — the only time I ever hear/heard from them was to ask me for help or donations, but I am all for public awareness if it’s done properly.

Yesterday’s race broadcast missed that boat by a long shot.

When it was breast cancer awareness month, everyone wore pink ribbons and talked about breast cancer, early detection, and its impact on lives. I am not trying to demean that in any way, I want to be clear about that, too. (I recently got another mammogram, women everywhere need to be checking themselves.) But, the difference between Nascar/Fox’s broadcast during that time and the AutismSpeaks 400 is so vast, I can’t even put it into words.

During the AutismSpeaks 400, I never heard one.single.word. about autism. Not one explanation of what it is, how to detect it, how to treat it, or its devastation on families. Several Nascar drivers have family members with autism, yet they weren’t interviewed, nor were they mentioned, or their work towards the cause.

To be fair, they did discuss the golf tournament held last week, in which autism was the charity. It got about a minute of airtime pre-race, but also really didn’t talk much about autism, briefly showing some autistic children smiling during a photo-opp with the Nascar celebs. (I did have to wonder when someone said they were so glad to participate in raising money so the kids could get help. In what way does AS give back to the actual kids with autism? I have yet to see it. I hear only about research and their $1,000,000-per-year apartment in Manhattan.)

To make matters worse, the three Fox commentators still wore breast cancer awareness pins. No autism pins. They even ran a Komen commercial. No autism commercial. Again, don’t get me wrong, I’m not against breast cancer awareness by any means, but what does it take to get some autism awareness during a race sponsored by AutismSpeaks? What was the point of having the sponsorship if no education/awareness occurred? We saw blue puzzle pieces everywhere, but those stand for AutismSpeaks, not autism. The puzzle piece ribbon stands for autism, so were we getting excited to see the AS logo, or for autism help itself? Really confusing.

Kudos to Rutledge and Krista Voda, who both wore puzzle-piece ribbons and pins. It was at least something. But otherwise, Fox let us down in a big way with its poor broadcast. And then there’s Jeff Gordon, who was briefly interviewed pre-race, who had to interject that he had a foundation, too, that was collecting money for kids, “but we’re dealing with kids with life-threatening illnesses.” Wow. So autism isn’t life-threatening, so it gets the “but…” statement. So many things I could say, but I won’t. I’m sure he didn’t mean to sound so, uhm, rude, callous and cold, but he did.

I’ll still be back watching Nascar next weekend, I don’t hold the sport responsible for bad broadcasting by Fox, but I do hope that next year, when this time comes around again, things are different. It also greatly helps that Fox is done broadcasting Nascar for the season, and coverage switches stations. (Phew. It can’t come too soon. DW was about to drive me crazy.) Nascar is one of the most charitable sports out there, with its drivers being amazingly giving. The broadcast network needs to keep up and do its part, too.

Next week, dd graduates from 8th grade (a big deal here apparently) and she completes confirmation. Her schedule rivals that of an executive’s right now, and I’m tired of just thinking of getting her everywhere she needs to be, though I am relieved that all the shopping is completed. Now, to choose a bible verse for the ceremony…

Because of the upcoming events, we decided to have a relaxed weekend, one without a lot of plans. We had the pleasure of attending a birthday party for a 98-year-old neighbor, and spent the rest of the time doing things around the house, with the most strenuous being washing the two cars and the truck. How did we get uninterrupted time to do that? Dd took BB out to see Star Trek, and he loved it! Aside from extreme adhd behavior, and a last-minute “I have to go potty NOW” trip five minutes before the movie ended…oh, and the insistence that he had to have sour candy during the movie…he did really well. I think the movie was a bit over his head, resulting in his inability to sit completely still, but he enjoyed it and it was a good time with his sister, so we’ll call it a success. He also played outside during the birthday party, and had no incidents!

I’d be remiss if I didn’t mention a HUGE achievement for him — he played baseball with another family for about an hour, and did great! He’s not a team sports person, yet. Dh tries to get him to play, but he doesn’t respond often. I guess the key is playing with someone else, so now he wants to practice. I can’t tell you how awesome it was to watch him play, with other kids, with a smile on his face. (I did give him a ‘the bat is not a weapon’ speech after, and he did the “Mo-om, I know that” (duh) reply.) Can’t wait to see if he follows through and keeps up the interest!

Recently, we’re in flux a bit about our worship situation, so we didn’t attend yesterday. We’re not sure ds is getting what he needs, yet we weren’t sure how he’d react if we didn’t go, as it’s routine for him — if we are home on Sunday, we go to church. I told him and he sighed in relief. So much for worrying about him reacting if we stop going, which more solidifies my concerns that he’s no longer happy there. Sad but definitely something for us to think about.

Pretty boring blog entry, I know, but sometimes, boring is good, right? Eight more days of school left, and summer is here. He’s got summer camp, an experiment, and I have high hopes he’ll do well. (If not, I’m not out too much money at least.) No VBS this year — dates were changed and it coincides with camp, so he can’t go. Good thing that when I told him, he gave another sigh of relief. One less battle.

I’ll try not to be boring next time. 😉


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