Wednesday, June 24, 2009

Diagnosis

Recently, a couple of people have asked me about how we came to have Ryan diagnosed. Might as well share with the group.

Ryan started using words around the same time as his friends, but they never gelled into sentences. At first, I thought the other kids in the playgroup were all really advanced, but the June before he turned three, when I asked his preschool teacher for her opinion, Miss Terry said, "I was thinking about mentioning that to you." She said that she and the director of the school, Miss Jeanette, had noticed that Ryan had been making normal steady improvement throughout the year, and then that summer he had just stopped making any progress at all. Miss Jeanette did an informal "language sampling," and based on her results, she recommended we get him tested by the Board of Education.

The process of diagnosing a child and matching him up with appropriate services is long and tedious. Summer is a bad time to get the ball rolling on anything that requires the Board of Ed; the summer that the Special Education department's office is moving is even worse. I started filling out paperwork in August, got an appointment to have Ryan evaluated by the Committee on Preschool Special Education in September, and got the PDD diagnosis from a developmental pediatrician in October. At that point, he started receiving some services in the context of his regular preschool. In November, he started at a special ed school. His occupational therapy screening finally happened in December, with OT services beginning soon after.

Throughout these early months, I was working through the emotional hurricane that comes with learning that there's something wrong with your child; educating myself about PDD and treatment options; and learning how to navigate the special ed system. I read a lot, cried a lot, cried while reading.

At first I thought he would be fine if he just received some speech therapy at his normal school. Then I saw what was possible with one-on-one instruction. Chrissy, Ryan's special ed itinerant teacher (SEIT) shadowed him in class one day, encouraging him to participate, and the other children gasped, "He can talk!" Soon after that, Stu and I went to Parents Night at Ryan's school. The kids' artwork was all over the walls. On one wall were 18 little construction paper people, with faces and hair drawn on. Rather, there were 17 with faces, and then Ryan's picture, with some random dots and scribbles all over. Next to those were 18 Halloween projects: 17 finger-painted pumpkins, and one made of tissue paper glued in a pumpkin shape, because Ryan refused to touch finger paint. After seeing this, I collapsed into a preschooler-sized chair and sobbed throughout Miss Jeanette's speech.That's when I accepted that he needed to go to a special school. I toured prospective preschools without really knowing what questions I should have been asking.

If you suspect there's something wrong with your child's development, start the evaluation process as soon as possible. They say early intervention is the key - the more help the kid gets while his brain is still forming, the better.

In addition, I offer this advice to any parent starting this process:

- Write everything down, and keep it in one place. I keep a spiral notebook that documents all our appointments, doctors' contact info, notes from meetings, what dates I left phone messages... It has been enormously helpful.

- Find support for yourself. I have a thing against therapists, but between support groups and online chat forums I'm starting to cobble together a sense of community that keeps me from feeling like I'm in this alone.

- When you meet with the board of ed, ask if they suspect your child is on the spectrum. As a matter of policy, they will not say the word "autism" unless you say it first.

2 comments:

  1. Thank you for sharing this...it is so valuable on so many levels

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  2. You're absolutely right that a teacher will rarely (if ever) suggest that there is something that needs attention and or use the word autism. The year I was teaching in NYC, I learned quickly that it was taboo. Even with a teacher's initative, getting that ball rolling is like pushing the waves back into the ocean.

    Ryan is SOOO lucky to have you and Stu advocating for him and making sure he is getting the best attention in the best situation.

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Keep it civil, people.