Special Ed...From Where I Stand, Part II

So, I wasn't worrying about school. I was too scared of what they were testing my daughter for. Each day, I would get her up, she would go to school and when I knew she was gone, I would cry. I made sure I stopped by at 1:30... so by the time she got home I was something like calm. I also assumed she did not know anything was wrong... something I learned later was untrue. She did know... she just didn't know what to ask me.

The first tests were blood cultures — genetic mapping to search for certain markers. After three weeks of waiting, they ordered another test... one I was familiar with, called an EMG. I'd had a few of those, and hated them. They are described as being "somewhat" painful. My doctor was very good with them, so only the last part of the test was bad.

But Desi was 10. She hated the whole process, though she tried to soldier through. I expected the doctor to be kinder... because it was a pediatrican.  Instead she was aggravated that Desi was resistant. "Hold her DOWN" she barked. I complied, and when Desi started to cry, so did I. When she begged me to stop it... I went to the special hell reserved for parents. By the time the test was over, I was so angry, I wanted to hit someone... literally.

We ran into her specialist as we were about to leave the hospital — and he was glowing. "I heard the good news... this is terrific!"

I stared at him.

"Didn't they tell you?"

"Tell me what?"

"She doesn't have Freidrich's ataxia, or nueromuscular dystrophy... if she had she wouldn't have felt a thing."

I stood there and stared at him. Never in my life have I wanted to do some violence... and also wanted to KISS them. I was numb. My girl would be OK. She wasn't going to die. It didn't feel real. I spent three weeks steeling myself for a world without her... and it was unthinkable. Processing the information was hard.  I was afraid to feel happy. I was scared to whoop.

We discussed what the next step was. He explained that Desi would always have fine and gross motor skill deficits, but no learning disabilities. He still suggested a special school. Dyspraxic children get targeted for "negative" attention. I was only dimly aware of special education. But it didn't matter. We would find a place for Desi.

I had heard that the district didn't favor "private placement." I started researching about Dyspraxia, which was tricky. At the time, there wasn't a lot of info about it online, and most of it didn't apply. A good deal of it came from the UK, New Zealand, or Australia, but it gave me a starting point. There were 39 schools on the list when I started searching. The district offered to "try" to fill Desi's needs... but no one on the study team had ever heard of Dyspraxia. That didn't seem like a promising start.

I started making calls. Yes, they had dyspraxic children... but no high function ones. Many dealt more with autism, or ADD. Not a fit. And then there was one. One school. I'd read their info, and they made an interesting promise. They taught children not only based on their deficits. but their stregnths as well. I went to visit the school, not really hoping for much.

And I found a small miracle.

The High Road School (now known as the New Road School) dealt with a wide spectrum of children in special needs. They carefully evaluated each child, and they believed they could help my daughter. At the time, she had an educational deficit as large as three years in some areas... and she needed all the help she could get.

I went to the child study team, and asked for Desi to get outplacement, bringing all the supportive documents. This meant tests, doctors reports, even an analysis by a pediatric psychiatrist who had run an IQ test on her, and said she was not performing to her potentials. The evaluation process is long, and grueling. I knew nothing about it when I began, but I needed to learn fast. The clock was ticking. I saw it as a limited window of time, before my daughter's educational issues became permanent.

I wish I could say we had lots of support from friends and family... but people thought we were nuts.  Fine, I would be a nut... but Desi would get her shot. After what seemed like forever, they finally approved the outplacement. Desi would be allowed to go to New Road. The first time I heard someone make a joke about "the short bus" I recoiled. That was her transportation. I had an attitude about what I called "short bus thinking." That was usually people who knew nothing about special ed at all... but assumed the worst. We would see about that.

Her first day, Desi hobbled on the bus in a soft cast. (She managed to break a small bone in her foot the week before.) It was the first time in two years I saw her happy about going to school. In less than a month, she was a changed girl. She got up in the morning, dressed fast, and was out the door like a shot. She acquired cursive (something they didn't manage in district) and started gaining on the losses. In six months, all her skill levels were age appropriate.

And then she started to do better than we dreamed.

The speech therapists in the district had not heard of dyspraxia, so they didn't know the therapy they suggested wouldn't work. Six years of it, and Desi was frustrated, Part of the reason she stopped talking. At her new school, they took another route, and her speech improved immediately. I'd heard of the "stigma" of special education. But that was nothing... compared to not getting educated. Most schools think of special needs in terms of LD's... learning disabilites. Desi's issues were more about teaching herself how to do things her body didn't understand, so she could get the work done.

And so we began our Special Education cram course. She was in 6th grade, and started to bloom like a rose. And that was the beginning.