No advance, no retreat

I had an advocate look at Ben's individual education plan (IEP) and was told it was in no way meeting his educational needs.

In looking back through Ben's school files, I see that I have been fighting for my son's education for a dozen years, since he began school at age 4.

In junior kindergarten he went to a segregated school for children with physical disabilities. When I picked him up one day I found him "restrained" by straps in a chair because he wouldn't stay at his art table. The principal felt this was the equivalent of a "time out." In senior kindergarten we moved him to a contained class in a Catholic school. His teacher was fabulous, but she didn't have the support she needed from the principal. When I asked for more integration, the principal said many teachers didn't want students with disabilities in their class and she couldn't change their attitudes. We couldn't have the class learn sign language because parents 'might complain.' There was always a reason why we couldn't meet Ben's needs.

The education assistants at the time weren't required to have any experience working with children with special needs. So the most inexperienced staff were placed with students with the most complex learning needs.

We began sending in our own well-trained worker.

When the board said it was changing its policy and would no longer allow families to send in their own workers, we moved Ben to an alternative public school. This school had a lot of parent and volunteer involvement and they were happy to have our amazing worker come in with Ben each day. For two years, three-quarters of my salary went to pay for the cost of this worker. Into our second year, the principal suggested that she could get the board to cover the cost. Against my better judgment, she put in a request. We were told that it was illegal that we were sending in our worker, but that all board funds had been allocated for that year, so that they could not assume the costs. Therefore, because Ben could not attend without his worker, we had to continue paying for that year (the board did assume the cost for the next year).

The upside of the alternative school was that it valued diversity, parents saw sign language as a learning opportunity for their children, and Ben had some authentic friendships. The downside was that the board provided no special-ed services there and the school had poor acoustics for a child with hearing loss.

During these years, we made two trips to the U.S. to look at schools that combined signing and speech. One was in Boston and the other was in Western Massachusetts. We tried to figure out a way we could move there, but my husband and I didn't have jobs that fell into the categories needed for a green card.

In my files are countless letters advocating for my son -- written to people at the various boards and the government. I even have a red file folder called "Ben, Human rights," based on what I understood to be infringements to his rights. My thought was that some day, when I had more time, I would pursue a legal case.

When Ben was about 13, we applied to have him attend one of the provincial schools for the deaf. He was turned down because in addition to sign, he needs speech, and the provincial schools are silent, signing environments.

He attended our local school for the deaf for one year and it was the best education he's ever had. But then he aged out of that school and because he'd had a psychological assessment that said he had a developmental disability, he ended up at a segregated school for students with life skills. We were told he couldn't get his high school diploma.

When I look at his IEPs over the last four years, they move from being detailed and setting high expectations, to being sparse, devoid of any academic goals, and not speaking in any way to who Ben is as a person. There is not a single goal related to reading in his current IEP and yet he is able to read.

Sometimes as parents we second-guess ourselves when educators tell us what we expect for our children isn't realistic.

And sometimes it's not just doubt that derails our efforts to advocate for our kids.

As a BLOOM reader wrote: Honestly, I don't think the board is used to parents speaking up. Everyone (myself included) gets tired of fighting!

But I see glimmers of hope for my son. I know that he will have an unconventional future that may not involve paid work -- but I know without a doubt that he can continue to learn.

His school is sending home some simple language homework, and he is able to demonstrate through it that he can read. Through the typing program he took at Holland Bloorview and the secret messages he does everyday, he is becoming more familiar with the keyboard. Last night we used WordQ again -- a word-prediction software -- and he was able to type a sentence very quickly (WordQ reduces the key strokes needed because you only type the first one or two letters and then select from five predicted words). He asked one of his classmates if he would come to the zoo with him. We are reading Harry Potter. We got a playstation 3 at Christmas and Ben is so adept at video games that his sister thinks he should be a 'computer gamer.' An advocate and a psychologist believe he has the potential to learn. Ben has four years of school left. And I'm determined -- somehow -- to get him the education he deserves.