Saturday, May 30, 2009

#10 What's bothering you right now?

What about autism is bothering you right now, this minute? Please let us know if you're at peace with it right now, too. Our feelings can change so rapidly from moment to moment: some moments are good, some not so much! That's okay, natural and expected, don't you think?

Right now, I'm fretting about attention spans. I saw Jack working with his wonderful aide on Wednesday and once again am struck by how difficult it is to get him to focus. (It's not just me...the aide couldn't get much out of him either!)

While I can usually stay in the moment with Jack, this issue has me wondering about the future of his education. Fact is, he's made enormous progress this year, so it shouldn't bother me. But it does. It makes me wonder if his aide next year will be as patient and persistent, as kind and gentleand creative. Will his teacher be as good? Oh, the uncertainty of it all, and the difficulty of trusting in Jack and God that it'll be okay.

Deep breath, Susan. Deep breath.

Monday, May 25, 2009

#9 What makes you smile?

As you watch your child grow and develop, what things most make you smile?

My attitude toward Jack's progress has been, from the beginning, a joyous celebration of what progress we see. I don't compare Jack to other kids; I compare where he was and where he is now. Consequently, I see progress all the time. Sure, he's not reading or writing or telling stories like the "normal" kids, but he's making progress. In just the last week, he told a story (beginning, middle, and end) at the dinner table for the first time. It was rough, and he was recounting a scene from a movie, but he used spontaneous speech (interspersed with dialogue from the movie, of course). WOOHOO! He is also using longer sentences of spontaneous speech in general and is answering questions more often and with longer sentences as well. At the preschool end-of-year carnival, he managed to play for two hours before asking to go home. I was practically dancing as we left! At last year's carnival, he only made it twenty minutes before sensory overload hit.

I recently had a weird experience with a special education teacher. His special education teacher seemed really disappointed in Jack at the IEP meeting a month ago. Jack may not have met her expectations of progress, but he met mine. I sent her an email afterwards explaining how three years ago, Jack completely shut down at school, had no friends, wouldn't even touch a pair of scissors much less cut a straight line, wouldn't sit in circle time or at a table with other children, wouldn't talk at all, etc. He now has friends and interacts with all his peers (mostly appropriately), follows the class routine with minimal redirection, cuts shapes reasonably well, and talks to everyone (asking questions, answering them, etc.). So what if he has difficulty paying attention to undesirable tasks and won't take tests well? These are just the next things to work on.

The teacher appreciated my email and has seemed more upbeat since, but I really do feel that unrealistic expectations can crush any child--autistic or not. It's important to push and challenge all kids, but by paying attention to how the child is progressing--rather than standardized scores or curriculum guidelines--it's easier to find the positive in a child's development.

Besides, Jack is just funny. The other day, while talking to my mom on the phone, he dropped the phone into his lap. He picked up the phone and asked my mother, "Did I hurt you?" Bwaahhaaahaaa!

So what makes you smile?

Thursday, May 14, 2009

#8 How was your initial contact with the school system?

When you contacted the schools and requested an evaluation, how did the school respond? Did you feel that the school responded appropriately? Were the evaluations handled well? How hard was it to get your child's "educationally necessary" services in place?

For us, the biggest hurdle was the home visit. The child psychologist and speech therapist came to our home, where Jack is most comfortable. He acted so normal! By the end of the visit, the psychologist said she'd never seen a child with Jack's diagnosis act so social. The speech therapist said she could see some minor problems but nothing major. They wanted to return to our house the following week for more formal testing. I insisted they needed to see Jack at school instead. By law, one of the two visits must take place at school, so they didn't argue with me. But I just knew they were shaking their heads in disbelieve.

The school visit could not have gone any better, however. Jack completely shut down and became absolutely unresponsive to their best efforts to engage him. The psychologist said she'd never seen such a dramatic change of behavior, and the speech therapist told me that Jack had played her like a violin at our house, masking major receptive language problems by being totally in control. At school, where he was clearly not in control, he revealed significant language issues. She was proud of him for fooling her! We got maximum speech therapy, reasonable occupational therapy, and placement in the developmental preschool program.