AGGRESSIVELY SEEKING PARTNERSHIPS

An item posted on the site of the St. Petersburg Times has an all-too-familiar ring to the average parent of a child on the autism spectrum:

When her daughter Sydney was 3, Kathy Swenson enrolled her in prekindergarten at a Hillsborough County school. But Sydney wasn’t getting the services that Swenson thought were crucial to her development.

“I wasted three years of Sydney’s life,” she said as she stood in front of more than 40 people, including two state representatives and Hillsborough’s new school superintendent. “We want a partnership, not a pity party.”

Ms. Swenson, tired of trying to fight for what her child is entitled to under the Individuals with Disabilities Education Act (“IDEA”), wound up starting a new school to specifically address the needs of children like Sydney. But to make it work, she’s looking to the local school system for funding:

“Instead of fighting me, embrace me, because I can take you where you need to go in one year instead of five,” she said.

Like many parents, Kathy Swenson has learned far more about how to deal with autism than most of the so-called experts. And her cry is the same one many of us shout out. The schools are required to give our children the same opportunity to be educated in the least-restrictive environment that is reasonably possible. “Let us help you,” we say to the schools, “use your resources wisely to accomplish that task in the most efficient and effective way possible.”

In Hillsborough County, the new school superintendent said all the things we’re used to hearing. She said that the system does not have enough certified teachers because those teachers can earn more money in schools elsewhere. It’s always about the money, isn’t it? But that superintendent was at the meeting and actually listened to what the parents were saying, and she offered some hope in that they were looking at other systems across the nation to see what was being done to attract and retain teachers. Moreover, the superintendent vowed to talk over the parents’ concerns with her staff, and she made a frank admission:

“There are some situations you have told me about today that should not have occurred,” she said. “We have a lot to learn.”

With that attitude, they may be on the right path in Hillsborough County, but the superintendent needs to understand that it will take more than keeping teachers. Those teachers need to work with the parents to determine and meet the individual needs of each autistic child, for they are all individuals with unique strengths and weaknesses.

My wife and I hope that we are on the right track in St. Tammany Parish, Louisiana. Like many parents of autistic children, we tried to work through the usual process of evaluations and I.E.P. meetings. But despite being in a school with a principal who is willing to “think outside the box,” and who believes in integrating “special” students into the general student body, we still weren’t able to get our son what he needed at school. Without going into too much detail, we felt like last year was wasted.

So far this year, even with the chaos caused by Hurricane Katrina, we are off to a far better start. Before the start of the school year, we sent correspondence to the superintendent of our system that made it clear that we were not satisfied with the status quo, and we laid out specifically what we expected the school to do for our son this year. That led to a meeting between the superintendent and my wife, Sym, who brought along our friend, Sheila Ealey, who was at that time in the process of starting a new school program for ASD kids in the New Orleans area (a project that literally drowned in the post-Katrina flooding less than two weeks later). A little bit into the conversation, the superintendent decided that a new meeting was required: one with her special education team present.

A couple of weeks ago, we finally had that hurricane-delayed meeting. True to her word, the superintendent brought in the head of special education, the system’s top speech therapist, the head of occupational therapy, and a couple of other staff members who needed to be in the loop. They listened as we (well, to be honest, Sym did most of the talking) explained how the system must move beyond using cookie-cutter solutions because each autistic child falls somewhere different on the spectrum. We made clear what our son needed, and they gave us an idea as to how they would try to meet those needs.

Everything has not turned completely around instantaneously. We are still struggling to get some of the school therapists to understand what works with our son. But slowly they are starting to realize that although our expertise may not match theirs in their respective fields, we are the experts when it comes to our son. Things may not be perfect, but we’re finally moving in the right direction.

Would all this have come about if we had not made it clear that we would do whatever was necessary to get our son everything he was entitled to under IDEA? I don’t know. But I believe our school system is acting in good faith, and I hope that we are helping them realize that there may be different ways of serving the autistic community. I hope that the progress they see our so make will change the way they approach educating all autistic children. And it all begins with allowing parents to be partners.