August 16, 2008

Getting Ready to Start Again

The mums are budding. If you live in a city you won’t understand that this means that Fall is definitely here. Mums try to bloom earlier in the summer but you keep pinching them back so they don’t get scraggly and begin to bloom about this time. No matter what our age, nostalgia creeps in as we look at ads for new school clothes and see sales for notebooks, pens, and paper. Mums are usually in the picture somewhere. Yup. Those back to school advertisements are still with us even though the kids have ipods and laptops and cell phones and we try to be “green” about our carbon footprint and the disposables of the earth. All of us have our own unique blend of the old and the new in ways too complicated to figure out. It’s time to get ready to start school again.

A student I represented 25 years ago has a 6 year-old child who is classified as speech impaired in a New York school district. Neither he nor his wife have any idea about how special education works, in spite of his history of due process and watching his parents fight to get him the special services he needed. Out of nowhere last week, he sent me a large file captioned “HELP”. I read it through. The district wants to retain his child in first grade when school starts in two weeks. She cannot do the reading required in second grade and the parents can’t pay for private tutoring anymore. She has an IEP and it does not state that she is to be retained. The parents never consented to leave the child back but the school told them they are going to do it anyway. The file showed that the child had all kinds of language and memory issues one commonly attributes to dyslexia. She can’t remember letter shapes. She has no sound symbol association. She has difficulties with expressive language. She has severe auditory processing issues. She has at least average intelligence. Her only services last year were speech therapy for articulation, though she had problems in reading and math that the teachers did a beautiful job in documenting. To those of us who have worked with learning disabled students, this is a common profile we see every day in one form or another. There is no mystery- none at all- about what this child’s problem is and what she needs. And this situation is not surprising because her Dad and grandparents are dyslexic. During the father’s hearing in 1982 when he was a student in elementary school, the school district took the position that Teacher’s College made up the term and that there was no such thing as dyslexia. We joke about that to this day. But here they are a generation later and it is not funny. They are terrified. His wife cries and feels helpless. Confrontation with the school is something neither parent is comfortable with. But Dad is out of work. The home is one step away from foreclosure. They can’t find anybody to tutor their child for free. And they cannot agree to leave her back because they are certain it would ruin whatever self-esteem she has left. How do I get them ready to start the school year again?

I’ve promised myself to do no more hearings in order to complete the dream of having my own school based upon applying neuroscience principals to instruction, while working with the social and emotional needs of young children with disabilities. Some of you sent me unhappy emails when I wrote the blog about my last trial. But it must be this way. So what could I do for this family, one of my kids from long ago? We worked out a letter with some options and we’ll see if that works. Otherwise, the grandmother will do the hearing (she was in the original training program 30 years ago) and I’ll testify. But why should it have to be? How hard is it to do things correctly? The district told these parents, “We always do it this way.” I’m sure they do, because nobody told them they can’t.

Calls are coming in with increasing urgency. And not just from parents. Therapists of all kinds are calling because schools are refusing to pay for related therapies and insurance companies won’t accept the billing because it is a “school cost”. The New York Times recently ran an editorial about how awful special education was in Texas and the connection between going to prison and being learning disabled. My God, we have been saying this for 30 years or more. There are pounds of research studies on it and even a New York judge who created a Journal just to address the unmet needs of incarcerated children who should have received special education. But what is old becomes new again with each subsequent generation. It is as though the history and legacy of special education has been erased from the books and all that is left are “policies and practice”. Fewer and fewer professionals and parents make any reference to the law that controls special education because they do not know it exists. The growing chasm between reality and organizations who remain out there for families makes the availability of genuine special education both unavailable and unaffordable. But at some point things must officially change. Either special education disappears completely from the federal and state statutes, or what we have on the books must have a clearer voice with the power to enforce the law without cost to the parent. There must be a penalty for the kind of negligence that is a national pandemic. At this point we are in the limbo of having a pretend law that only the rich can enforce, while the rest wring their hands and cry their hearts out.

I have no answers and my belief is that nobody else does either. We still haven’t gotten past racism in this country. We still put children as our lowest priority. Each of us must do what we can for the families we know. It is a mission we share together- a faith-based mission of spirit. Each of us has within us the ability to reach out and help at least one family we know- no matter what our own circumstances are. It is our tithing to the church of tomorrow through the giving of time and skill and support. That is all I can do now, and I hope it will be enough. My reflex is to march into the school for this child and the other families who keep calling, to honor the call for HELP and do battle. But my discipline says that those days are over and we must find new ways, new associations, and new insights for those unable to help themselves.

I maintain my sanity by working in the garden each day. I play jazz and dance. I marvel at the wonder of my family. I can’t wait to teach each day. I’m even studying voice again and making sounds I haven’t heard in 35 years. Within the fullness of life must be shared joy. That is the ultimate goal of special education, too.