Interview about life with autism...

Happy Spring, everyone!

About eight years ago, I gave an interview to Donna Satterlee Ross. She was working on a help book for families of children with autism. This is one of the section of her book called That's Life with Autism which features part of Ben's story! :)

I hope that you enjoy reading it as much as I did getting interviewed and sharing my tips and knowledge!

Sophie and Ben (10)
I attended an IEP meeting back in February. Usually I sit across from the
school district representative, however this time we were crammed into a
little room so I ended up sitting next to her. As we discussed each service
Ben received she would type the team’s recommendations into her laptop
computer. After each decision was entered, a separate page would pop up
with the total dollar amount per school year. I thought Ben was a pretty
expensive kid to have in their school district, but when I saw the final total I
School Daze: Our Experiences Navigating the Educational System 71
nearly fell off my chair. Incredibly, it cost over $25,000 for one school year!
Obviously, the level of help is great here and this district is trying to provide
what is best for the kids.

In the beginning I had to fight to get the regular doctors to point me in
the right direction. There are so many types of services available here in
Pennsylvania but at first no one would tell me anything about how to get
them. Everything was very hush-hush. Finally someone told me to check
out Early Intervention, but they didn’t give me a phone number or an
address. I felt like a detective searching for clues on how to help my son.

One of the first meetings we had was with a special education teacher.
When I brought Ben into the classroom he was fine but once he saw the
teacher he started screaming his head off and hid under her desk. Over the
screaming she acknowledged that she would do her best to help. Her face
seemed to betray a feeling of dread—and this was from a seasoned professional
who had been teaching for over 15 years. No doubt she had seen it
all, until now. He screamed throughout our entire conversation. Finally, we
dragged him out from under her desk because the speech therapist wanted
to evaluate him. No luck that day!

Oddly enough, Ben remained in that classroom during both years of
preschool and loved the teacher. He entered kindergarten on schedule the
following year. At school he learned “The Pledge of Allegiance.” Although
he still couldn’t speak very well, I could tell what it was. I brought him back
see his old teacher and said, “Come on Ben, let’s say the pledge,” and he
did. She couldn’t believe how much progress he had made in a year.
Several months ago, the psychologist who re-evaluated Ben accidentally
left out the diagnosis of autism. The school officials were unable to do
anything for Ben until we had him put the diagnosis back in the report. He
was new to the job and didn’t realize the significance of that one word:
autism. Paperwork is a big issue with the schools and you have to make sure
to state each time there is an evaluation where your child falls on the spectrum.

Ben continues to progress on the spectrum: when we first began
everything he was in the severe range, now his symptoms are more under
control. One of the psychiatrists mentioned that he might end up having
Asperger’s Syndrome. At this point, I don’t care what they call it as long as
he can function.
Actually Ben has a dual diagnosis of autism and mental retardation,
which I found it really hard to accept at first. How can they expect someone
who can’t communicate to take a test that truly indicates their intelligence?
However, it qualifies him to receive additional services so now I just view it
as another part of the paperwork. I know he’ll never be a rocket scientist,
but Ben’s labels don’t make us love him any less.

For the longest time Ben was in what the school system called an Autistic
Support Classroom. Recently we moved to a different district so he is
now enrolled in what they call Multiple Disabilities Support. Before we
switched schools, all the children in his classroom were autistic spectrum
kids. Here they are grouped on the basis of functional level, although the
diagnosis may differ somewhat. I think half of the kids in his class have a
PDD-NOS diagnosis. I actually prefer the set-up he has now, because there
are only six or seven kids in the classroom and as many staff members; basically
it’s one on one. The structure is very beneficial because Ben needs a
high level of assistance.

Ben thrives on routine, so going to school provides him with the structure
he needs. Right now they are working on harder things at school, so
he’s been having some difficulty. He’ll tell me school is boring and that he
doesn’t want to go. However, once he realizes I’m not going to give in and
let him stay home he’ll decide that he wants to go. He stares out the
window repeating, “Where’s my bus?” in anticipation until it arrives.

Sophie’s tips

• Keep being the squeaky wheel.
• Talk to everyone and ask lots of questions.
• Take advantage of the Internet; there is a wealth of information available.
• If you know in your gut something is not quite right—investigate.
• Don’t wait! The earlier you start,the easier it is to establish language.
• Be aggressive and demand what you need.