Sunday, February 21, 2010

#31 IEPs

We just got a notice from our son's teacher that she's preparing for his IEP meeting and wants to know what goals (social, academic, speech, OT, PT) we want to set for second grade. Frankly, I'm always baffled by these request. I sort of know what I would like to see but the specifics are really not in my specialty.

I'd like for him to be reading at grade level before the end of second grade (which is, I think, very realistic at this point and with this teacher), but beyond that, I'm not sure what sort of academic goals I would push. "At grade level" seems good to me, especially since this school district isn't slack in academics. I'd also want him spending more academic time in the typical classroom, as he becomes able to do so.

As for social, I want him stimming less at school, and I'd like that to be a measurable goal. Not sure how, but perhaps the teacher will have a better idea. But that is becoming a big barrier between him and his peers. They just don't know what to do when Jack starts spouting movie lines randomly.

OT, PT, and Speech are much more measurable. I want Jack's handwriting to be more controlled, his core strength to continue improving, and his receptive language and conversational reciprocity to improve. Also, I'd like the OT to work on sensory techniques to get Jack concentrating better in the typical classroom. She's had amazing success with my firstborn.
Then, there's the bus. Nick will be in fifth grade (the oldest grade on the bus), and I wonder if he would be enough of a supervisor for Jack to ride the regular bus. I am pretty sure one friend of mine thinks I'm being way too overprotective having Jack on the "special" bus as it is.

Anyway, to today's question: How specific are you with requests like this? Do you get detailed with goals, or do you feel comfortable with your teachers, intervention specialists, and therapists taking care of the specifics? I feel a very high level of trust with the school, but if I didn't, I'd be a lot more concerned.

Tuesday, February 9, 2010

#30 A Question of Words

My other blog, Questioning my Intelligence, touches on the topic of autism today, and today's question stems from that essay.

Has anyone shared kind words with you? Sometimes, it seems that parents of children with autism only get dirty looks and criticism from others, but I know that there are people in the world who share kind words and smiles, too. Today, let's share those stories...either of kind words you've given to others or kind words someone has given to you.

One day about a year ago, a woman who works at our church preschool stopped me and shared a story. She had helped a friend by watching her children one morning. One of the children was autistic, and the experience helped her see just a bit of what parents of kids on the spectrum deal with day to day. Her friend had a hard time finding someone to watch her kids and really had appreciated the help.

The preschool mom knew Jack wasn't as severely affected as this other child, but she told me that if I ever needed someone to watch him, even on the spur of the moment, to call her.

I'd recently been dealing with the fact that a neighbor didn't want Jack in her house because he makes too much noise. At least, that's what she said. To have someone reach out to me with such a generous offer really helped assuage some of the annoyance and hurt I was feeling.

What kind words have you heard or given? What effect did they have? What keeps you from speaking kind words when you can?

Thursday, February 4, 2010

#29 Dealing with Ambiguity

Given the Lancet's recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.

And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.

And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.

And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.

There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.

Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"

I really hate that little voice.

I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.

How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?