Autism Watch: 2007

Archive for November 2007

U.S. Appoints Autism Advocates to New Federal Panel  From Reuters

Dare we hope it’ll help? I’m thrilled by some of the names on the committee list though — Lyn Redwood (Coalition for Safe Minds) and Lee Grossman (Autism Society of America) are excellent choices. The mention of vaccines causing autism is a good sign, but it’s almost scary to get encouraged by the thought of that being mentioned in the same article as the CDC (Centers for Disease Control).

State Delivers Reprieve on Autism Aid  Times Reporter, Ohio

Like it should have ever been stopped in the first place? There’s too many disabled people, so they get penalized? NO words. There are no words that I can say here.

UN Designates April 2 as World Autism Awareness Day Pravda Online

Interesting.

No, it wasn’t me saying that.  I’m not a big happy wait-er, but I don’t yell like that. Okay, not usually at least…

I took my son to the neurologist today. We have a good neuro, but sometimes the wait is a bit long. What can a neuro do for a child with autism? Quite a bit actually, and we’re lucky to have one that we like. Anyway, we got there about 20 minutes early so I was glad I’d brought the Gameboy. Unfortunately, all 317 games in the Gameboy case were ‘boring,’ so he found several things in the lobby to keep him busy.

  • Standing at the receptionist’s desk making popping noises with his mouth
  • Staring through the mail slot into the hallway by the doctor’s office
  • Squeezing the fake stomach in the acid reflux medication advertisement model 
  • Playing “no, you can’t get me, Mom!” in the waiting room, while running around chairs in the empty areas
  • Sticking the entire ring pop in his mouth, ring part and all, while making loud licking sounds

When all those activities ran their course, the yelling started. Don’t worry, I did tell him to stop yelling ‘freakin.’ I’m not sure how the other patients felt about his outbursts, he was getting some looks from all those ‘healthy’ people waiting to see the neurologist after us. I then took him to the restroom, we sat back down, and blessedly we were called right in. Phew.

Ds has to get a panel of blood tests — he’s got unexplained leg/foot pain that won’t go away, resulting in quick leg fatigue and fits when we have to walk or stand for any length of time…say, more than 5 minutes. Let’s hope this blood test gets us going in the right direction.

I found some great news articles on autism today. Here’s a few favorites that are worth the read:

Clinton Unveils Autism Plan AP article

I don’t know yet who will get my vote come election time, but at least this is more encouraging than Bush’s “yes, I’ll get thimerasol out of vaccines” that turned into “no can do,” or his outright vetoes and refusals to sign anything that would take money away from the war in Iraq and spend it on American children with health issues.

And this one’s just fun — because who really ever believed it anyway?

Blog Debunks Study Linking Wifi and Autism  from the Financial post

..and he’s still happy! Not one meltdown!

We spent the afternoon at our friends’ home, a huge Thanksgiving dinner where we were the only non-blood-related guests — but family isn’t just those related by blood. These friends are family, and we had a great time. At one point, I told my friend how ds just doesn’t do this. He doesn’t just get comfortable, smile, giggle and have a meltdown-free afternoon every place we go, but he did today. She said maybe it’s because I was comfortable with him there. After a minute of thought, I realized she was right. I didn’t have to worry about him yelling, being too loud or saying odd random things. (And that he definitely did.) There were no judgmental stares, glares or comments. He was with a family of patient people who talked with him and not to him. So between that and the numerous pets wandering around for him to play with, he was happy. He enjoyed his day, from starting with the Macy’s Thanksgiving Day parade through dinner and then hanging out at our house afterwards.  And for that, I am truly thankful!

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Got a few minutes to feel sort of riled up?

http://www.11alive.com/news/article_news.aspx?storyid=106720

Read the comments. The article is great, the interview informative…but the comments? Ignorance still abounds. When in doubt, attack. It must be easier to deny, deny, deny and believe the CDC because, well, they’re the CDC, than it is to research and at least listen to those who are dealing with autism in the first place.

It’s a darn shame it took until Jenny McCarthy stood up for this to get so much attention, but at least it is. Jenny’s doing amazing things, and I am one of many parents thankful to her.

If your child has improved with biomedical, it’s time to speak up.

The diagnosis of ODD has been tossed around a bit during the last couple of years, but we aren’t buying it. It’s not a permanent thing…okay, it’s not always that bad. This week though? Oh yes. In fact, the last 4-5 days have been a bad case of ODD: Obstinate Dude Disorder. (Ask me for my personal definition of PMS…go ahead, ask me. I am really creative with initials.)

This has been a day of obstinance. The last kernel of corn on his plate was the last straw. He’s now upstairs playing the newly repaired Gamecube, but unhappy about the disappearance of its memory card, which, of course, he did not lose. He had nothing to do with it. He, in fact, never has anything to do with anything and the rest of us are idiots.

Along with ODD, he’s a stim monster. Hands in the hair, fingers pulling the eyelashes (normally a sign of stress, but sometimes just a stim) and the most obvious? Shirt off the shoulder, cheek rubbing said shoulder. Over and over.

Stims are one of those things that are really common with kids on the autism spectrum, but that doesn’t mean we just let it go. We do pick our battles, and right now, his ODD is our bigger battle, but I do worry since the winds are apparently due to kick in within the next couple of days…four or so days of them. When the winds get bad, he normally wants to stay in his jammies all day and cuddle…or yell. You can’t really tell what kind of mood he’ll be in. That changes every minute, and I doubt even he knows what he’s going to do next. The good news? I work tomorrow and am off work again until Monday. I can pound Starbucks while working on some new ABA techniques that may help.

Speaking of ABA, I’m thrilled to be starting a new program within the next few weeks. Thrilled. Seriously. I know we’re in for a lot of work, but I am clearly not a professional behaviorist, and I welcome the input of those who have been in the trenches. I am looking forward to this to the point where my friends are probably thinking “oh no, she’s talking about it again.” To you who put up with it, you can come to our open house in December. 😉

Tomorrow I get to experiment and see if there’s another cookie I can make for ds that doesn’t have oatmeal or chocolate chips. Oatmeal makes him gag, in any form, and he’ll eat chocolate chips forever and I’d really like to bless my family with something other than that kind. Then I need to complete some jewelry I’m making for Christmas gifts, plan what pies I’m making for Thanksgiving dinner and dive into the stack of new autism books that are growing dusty. (And it’s not helping that I keep adding to it. I just bought Dr. Bock’s book on autism and epidemics of childhood and I have a highliter ready to go.)

Speaking of books, has anyone noticed the plethora of books on autism that are coming out over the next few months? Now we just need a bookstore closer to my house..like within 5 minutes. I can get to our closest Borders in under 10 minutes, but I want closer. Parking alone at that store takes longer than the drive. I also have TACA’s journey book that I have yet to crack open though I know it’s full of info that I definitely need to try.

Off to see if the memory card has yet been found. Ds stood on the stairs yelling about it, then crying, and for right now, he’s calm….the calm before the storm?

In each of my kids’ lives, I’ve had at least one day of ’11 more years of this?’ Maybe it was 8, maybe it was 4, but there was always a day where a school issue arose and it hit me that there were xx years of school left, and with it, xx years of hassle. I eliminated some of it by homeschooling, though this year I do have my 12-year-old daughter in 7th grade at a public school. So far, so good. My oldest graduated last year, and my second child will graduate from homeschool shortly, early. However, my youngest is only in first grade, and after one hellacious trial run at special education first grade, I’ve learned it’s not just the diagnosis of autism that’s the challenge, but the whole system.

Lest I seem unnecessarily negative, let me give you a bit of a run down. Last year, we had a teacher who had no experience teaching autistic kids, in any realm, and by the time we pulled him out before the year ended, we were sorry we hadn’t done it months earlier. We lost a lot of time at work, money on our attorney, lots of hours researching, studying, learning and observing, but mainly, I wondered what memories and fears our little guy was left with. He still sees the offending teacher periodically; I cringe on his behalf, and am thankful I don’t run into her. (And she still has our address and phone number, something I learned is never good — surprise visits and complaints were results of angering her and going to the principal.) We had a crash course that year that what’s the best for our child isn’t always what happens, admin doesn’t always really want to help your child as much as they may want to just shut us up and stop the cash flow, and autism awareness is still in short supply.

So what happened this time? Yes, that’s what I feel like when I tell people. Another problem. An issue “again.” It’s almost difficult to believe, at least in my head, that we could end up with two bad situations two years running, but it’s a reality. We had an aide for my son that we thought was working out. My son wasn’t always happy with her, but he’s not always happy with me even. I don’t know any kid that loves their teachers every single day, so I took what he said with a grain of salt. As an adult, as a parent, it doesn’t take a degree for me to realize that kids do that — they say things in anger, they say things without realizing the implications, and the world is more about them than anything/anyone else. For a kid with autism, this is just amplified. Again, no degree in special education or child development was necessary for me to know that. Maybe I was naive, maybe I was just stupid, but I assumed that one of the basic tenets of working with special needs kids is that you’d be aware that their personalities were affected. However, this aide took it all personally and had extreme expectations for my son. He was to be respectful, positive, non-demeaning and nice at all times. If he wasn’t, she refused to tolerate it. That is a quote. She outright asked me if his rudeness and lack of respect didn’t drive me crazy..and that was probably one of her nicer comments. The conversation digressed from there, and it was quickly apparently that she not only didn’t like my son, but she didn’t understand him or autism in the slightest…and she felt it was within her rights to tell me she didn’t see autism in him at all, only behavioral issues. (Uhm, hello, autism book, research, training 101, anyone?) Not only do I have an excellent memory for verbal conversations, particularly those that are about one of my kids, but my older son (almost 18) provided an excellent witness, so I headed to the office immediately after. He now has a new aide. (I am blessed, this year, with a great district and admin.)

Why am I sharing this? I want people to be aware and alert. I want others to know there is always a need to check in, get to know your child’s aide, stay in close contact with your child’s teacher, and ask questions. And request training. Ask that your child’s aide be trained in autism overall, and more specifically, the details about your child and his/her level of autism spectrum disorder. I had already talked with school staff the week prior to this situation, and I’d been under the impression my child was simply being difficult, the way he is when he gets comfortable with someone. If I hadn’t approached the aide directly, to explain that she can talk to me, I’d not have known all of this. Where would we be then? Blaming my son? Dealing with what? God forbid, being the next case of an aide filing charges for assault if he accidentally had hit her foot when he pushed out his chair?

 That day, I admit to thinking “Eleven more years of this?” I want my son’s school years to be happy and successful. If he was just there for educational purposes, I’d homeschool him but he needs so much more. I do worry now, more than I did. If these special needs aides/teachers have already proven to me, by first grade, that not everyone who goes into this field is equipped for it, I’m scared. Which leads me to my next question, why be an aide if you expect a child to be perfect? Why think your few hours a day with a child qualifies as reason to question the diagnosis nine other doctors/specialists have applied? If someone can’t handle bad attitudes and tantrums, take note: you aren’t qualified for the special education field. If a parent has to worry more about your personal feelings and you forget the needs of the child over your unrealistic expectations for their age, you aren’t qualified for the special education field. If you think a parent is going to agree with you and say “I know, what a brat,” you aren’t qualified for the special education field. And if you get so mad you have to start taking jabs at the child, such as talking about intelligence, you shouldn’t be in the education field, period. Don’t take any babysitting jobs either.

Vigilance is my new motto. (It used to be ‘never pay full price.’ How things change.) I want to be cooperative and understanding towards those working with my son, but bottom line, my son comes first. If someone can’t understand that, well, they either aren’t a parent or pity to their kid(s).

My daughter’s looking for a job as an aide. She’s studying special ed. in college, and she lives with her brother every day. She also passed the test. Poof, she can be an aide….she’ll be good at it, but at some point, the requirements to be an aide should be more. Raise the bar. Accept nothing less for our children.

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