March 31, 2008

Old Days, New Days - 30 Years of Staying in Place

I was cleaning out the attic last week when two small cardboard boxes fell on my head. One held loose papers from the 1970s, when my daughter, Melody, began special education in Teaneck, New Jersey. Another held newsletters I wrote for the local special education parent association from 1976-1977. Oh, those infamous newsletters! When we moved to Teaneck in 1975 I was very pregnant with our son, busy raising our daughter and trying to help her in every way I could. Two weeks after we moved into our house, there was a knock on the front door. It was the president of the Teaneck special education organization. A friendly woman with 6 children, she came to welcome us to town. She visited a while and then asked: “Marilyn, would you consider being president of the special ed PTA this year? Nobody wants the job and it would be a good way for you to get to know the town. What do you say?” I was flabbergasted. She said the job was really easy and that all I had to do was to host a few meetings. How bad could it be, I thought. So I said yes. The next day she brought four shopping bags full of records to the front door and told me they were the special ed PTA files. I might want to look through them. That was in August of 1975.

It turned out that the PTA was a 501c3 organization that was to be completely separate from the school district. There were by-laws and specific descriptions as to what the president and organization was to do. One of them was to write a monthly newsletter for parents. All the names and addresses of the PTA Executive Board, all of the administration and teaching staff, and all of the parents whose children were in special education were in the files. Nothing said that I was to coordinate what the organization did with the school district and nobody from the school district called me. So I waddled around, sorted through and organized every paper in the four bags, and then wrote the first newsletter. It was to be dropped off at the schools and distributed in the backpacks of the special ed kids when they went home. Within an hour of dropping them off in October, I got a frantic call from my daughter’s principal. “Mrs. Arons, I’m sorry to have to tell you this, but the PTA can’t do anything unless the Director of Special Services approves what you do. We can’t distribute your newsletters because they haven’t been approved.” I immediately called the Director, Bernard Shore, and asked him about the newsletters. He was livid. Who did I think I was? Special Education was his and nothing happened without his approval and control. I apologized and then asked about the nonprofit status of the group. He said, “You mean you read that stuff? Forget it. It doesn’t mean anything.” That is how my introduction to special education began. Mr. Shore controlled where the meetings were held, the programs, and-of course, the lives of every special education child in town. I explained that I meant no harm, was a New York City schoolteacher, and simply wanted to be able to contribute my skills to the group. I explained that I knew how to write grants and might be able to get the kids some services they didn’t have. By now I was 8 months pregnant and Mr. Shore was betting that after the new baby came I would go away. He told me that this wasn’t my fault, that pregnant mommies had to be excused, and that I would get used to how things were done in Teaneck.

I met with the Executive Board before Christmas in 1975 and showed them what was in the four bags of documents. We decided to mail the monthly newsletters first class, wrote a swimming grant to get the kids involved with a local pool, sponsored an Art show to display their work, created a birthday card group, a lot of things. And we decided to have the PTA meetings in the places we decided and not where Mr. Shore was used to having them. By March of 1976, Mr. Shore asked to have a meeting at my house. He brought his child study teams, the superintendent, and prior members of the PTA. In my own living room they tried to fire me from the PTA because I was dangerous, refused to do what I was told, and had an unproductive “hypnotic” impact on the new parents. He asked that my Board impeach me. They refused. When everybody left, Melody tiptoed into the kitchen where I was crying. “Were you bad, Mommy? It’s OK. Don’t cry, Mommy.” Ray had his arms around me and Jonathan was asleep in his crib. Ultimately, I decided to resign, creating the job of Newsletter Editor for the next year. The first newsletter introduced P.L 94-142. Law was featured in each subsequent newsletter. This was the last straw for Teaneck. Telling parents that there were laws that controlled the services their children received was taboo. Brand new to the town, isolated because of having a child in special education, I was then doubly isolated because of being labeled a “radical” because I talked about “law stuff”. This was the caldron that forged the years to come. Those were the Old Days of special education.

How different are the New Days that young parents experience now? None. Not one iota. A gigantic business of consultants, special education attorneys, advocates, clinicians, and publications have gestated and evolved from the birth of special education. But from the parent perspective, it is as confusing and intimidating as it always was. Sometimes I think it is more difficult than it was because the information has become distorted, interpreted through a variety of political lenses that were not there at the start. Special Education is now a booming business of tutors, schools, research and gallons of snake oil for the desperate that will try anything. These thoughts go through my mind as, at long last, I prepare to finish what is my very last trial. I reflect on how this all started and how it is that I am still standing.

Next week I resume a trial I have been working on for three years. I can’t talk about it specifically until it is completed. But my feelings are new. I watch and listen to the very young attorney who represents the school district. He is overwhelmed and frantic. The due process system I know doesn’t exist anymore. Everything is overloaded and looking for a quick fix. There is little courtesy or reason left. The judge hearing the case had to receive a federal court order before she would follow the rules of her own agency- the Office of Administrative Law. I find myself in the middle of a case study and have seen this story before. There is anger that someone should actually read and know the law and demand it be followed. There is tension because the judge must now acknowledge the procedural mistake she made. I wonder how the trial will go, in a detached kind of way. But it cannot be more difficult than the Special Education Director firing me in my own house in the Old Days when special education was born. I look around and we are where we were at the beginning. We have run the special education race and look down to find that we are where we began- at the starting gate- with four unopened bags of paper that hold the keys to success- if we can only sort them out and read them.

Click here to see Special Education Association newsletter.