Tuesday, October 28, 2008

A Diagnosis Story

This morning I shared my family's experience as a panelist with a classroom full of college students taking an early childhood class. Two other parents shared their stories as well. I told them my ten-year-old son with autism was a better speaker than I and meant every word. I missed my little shining star.

Mostly I shared the reasons behind our delayed diagnosis and pointed out my son may have been a stronger candidate for full inclusion in the schools if he had been able to get more early intervention. My major point, however, was that early childhood education teachers (both a special education and a regular education teachers) played a stronger role in both identifying the delays and the reasons and providing early intervention than the doctors did.

To make a long story short, our family doctor had no clue why my son had some delays. He wanted me to go to a psychologist who was going to charge $1000 to implement a diagnostic survey. My insurance would've only paid $400 of that amount. So, I thought that we could do without seeing the psychologist.

Instead I enrolled my child in a regular preschool program. She noticed that he was delayed and had a speech therapist watch him. That therapist agreed my son could use some intervention so the teacher helped us get an assessment done by our school system. An Individualized Educational Plan meeting was set up and my son was enrolled in an early childhood program.

Then we moved three months after he began the program. We brought the IEP with us. We decided that maybe my son should see a pediatrician instead of a family doctor. That doctor listened carefully to my concerns and suggested that my son might have autism. I thought 'no way' because I thought autism applied only to people with more challenging autistic traits.

After looking at the survey she gave me I changed my mind. After looking at my answers, she suggested we see a developmental doctor in Ann Arbor. It took eleven months to get in. The developmental doctor exasperated us when he said he liked to see children come in at a much younger. My son was six years old at the time. I would have liked to come in much sooner too, but that was not meant to be.

While we were waiting to see the developmental pediatrician I had a fall conference with my son's preschool teacher. All the therapists (occupational, speech, etc.) were there. I was going to tell them I thought my child had autism and they were going to tell me the same thing! So an assessment team of four professionals was assembled and each spent twenty hours observing my son in our home and the classroom as well as reviewing his case. He qualified as AI (Autistic Impaired). He was five and a half at the time.

Besides sharing the diagnosis story, I also told the class that my son spends half a day in regular education and half a day in special education and that he also gets speech, occupational and physical therapy. I added that I have been happy with my son's progress since the day he began the the special education program. I also talked a little bit on the subject of siblings and marriage. I think the students appreciated our stories, although I think I would have enjoyed having my son (who was in school at the time) talk more so than talking to the students by myself.


Anonymous said...

What a great way to teach students about how difficult finding a diagnosis can be. We did not get M diagnosed till she was nine. OF course we had every diagnosis in the book up until then.

Casdok said...

Well done you! I bet you did miss your shining star. but sounds as though you did really well.