Autism Watch: 2007

Archive for August 2011

Autism, ADHD Share Genetic Similarities: Good article by Fox News.com and the title gives you a big clue what it’s about 😉     I saw this one in a news feed earlier today, so I googled it and found it’s referenced in quite a few blogs, so you may have already read it. That search then made me realize, I haven’t done a news entry lately, so here you go.

Autistic Maple Grove Boy Wins Battle for Treatment Coverage: a StarTribune article that’s inspiring to see as it’s a success story, but my first thought was “Why are we as a community still having to fight for this??”

Progress slow but sure in fight against autism: The Inquirer and Mirror writes a piece that makes me say “Really?” Where is this hope at the end of the tunnel? My son already has autism. We already get zip for help from any foundation or organization that all these funds raised go to, and because I work, we don’t qualify yet we can’t afford all the therapies out-of-pocket. I don’t want my son “cured.” I just want him happy and learn to regulate, and that won’t happen without services that the average person can’t get.

Missing Middletown Teen Reunites With His Family: Killingworth-Durham-Middlefield Patch article (whew, way too long of a name there). Feel good piece, as too often, these missing kids are found too late. SO nice to hear of a positive ending! For those who think Asperger’s and/or ‘high-functioning autism’ isn’t so bad, ahem, it’s still autism. Speech doesn’t necessarily cure much.

Autism Makes Multi-Tasking Difficult: ThirdAge.com article. To whoever did that research and came up with earth-shattering news? Thanks, Captain Obvious.

That’s it for today. IEP now set for next Tuesday…can we make it the remaining 3 days??

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I opened up my blog page, thought about the title, and then realized, why am I thinking on this? I’m definitely over-thinking this. So I decided to cut to the chase: this entry is about school and autism. Voila, the name of the entry.

First, the disclaimer: I’m tired and lacking creativity.

I slept well last night. Went to bed at 11:30 after watching the two-hour finale of Masterchef (yay for Jennifer!) and I passed out as soon as the TV was off, but 5:30am comes early. My mornings consist of getting BB ready for school, signing in to work, working, taking him to school, and working until I pick him up. Then I work another 30-45 minutes or so. I’m used to that, but when you’re dealing with your school every single day, and dealing with your child venting about school the rest of the time, it’s tiring. It sucks your creativity like a Dyson picks up dog hair. Sorry, BB’s service lab sheds like you wouldn’t believe so it’s an analogy all too in-my-face.

Moving on…these last couple of weeks have been the proverbial rollercoaster. We have a great day and things look good. The next day blows big chunks and he doesn’t ever want to go again, once the anxiety-induced migraine goes away and he’s willing to talk as opposed to crying and yelling. Fun stuff.

IEPs are good things to have. Nice handy legal documents that explain how things should work and give people guidelines. But much like a restraining order and a persistent abusive ex, it’s only a piece of paper that totally depends on people to follow it.

One teacher/administrator who doesn’t feel the accommodations are right, doesn’t want to do the accommodations, or just has assumptions about your child and the diagnosis can blow the whole thing.

Long story short, that’s where we are right now. We’ve got a wonderful team around us, albeit a busy one, and we have one person in particular who gets BB. And one person who doesn’t…and doesn’t seem like she wants to.

BB is burned out. I’m burned out. Dh is burned out. We’re at the crossroads of: This is Your Last Chance to Make it Work Road and Homeschooling Highway. Not a place I wanted to be but then again, I never wanted to be a part of the autism club either.

BB is happy tonight. He is positive towards tomorrow, so I will be, too. It can be a hard thing to tell yourself: think positive, don’t let the last two weeks of hassles get you down, shrug it off and have faith. But I’m trying. Trying hard, and letting BB lead the way. He teaches me more than anyone I’ve ever known.

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.


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