Appreciating the services our kids get: a guest post

This guest post is from Jane Schulz, Ed.D., over at Grown Man Now. She's the author of a book by the same name; the title refers to her son Billy.

Jane, a mom of four, is a longtime advocate for the rights of people with disabilities. She's an inspirational speaker, writer, and educator; she is considered a pioneer in the fields of special ed and civil rights. She literally wrote the book: "Mainstreaming Exceptional Students: A Guide For Classroom Teachers."

The book is available in paperback and on audio.

I don't think the words "dedicated" or "determined" or "intrepid" even begin to describe Jane, a woman who has a picture of herself parachuting on her profile photo. She and Billy live in Kingsport, Tennessee, where the two often speak at churches and youth and civic groups. Please, give her (and Billy!) a warm welcome! I know she'd be glad to answer questions.

Dear Parents,

I have read your blogs and comments and I understand. I understand because I’ve been there – starting 55 years ago. How different our lives were from yours! We didn’t have to deal with the speech pathologists, the physical therapists and the early childhood specialists…because we didn’t have those services.

My son Billy was born in 1956; we were sent home from the hospital with the assurance that everything was fine. But Billy was our third child, and we knew better. It seems impossible from today’s viewpoint, but it was eighteen months and three pediatricians later that we were told he had Down syndrome (they called it Mongolism).

Somewhat relieved to have a diagnosis, we asked the doctor what we should do. He said, “Take him home and love him. He will be sickly and he will like music.” On the way home we stopped and bought a humidifier and a record player. This was our early childhood intervention.

We learned later that many babies with Down syndrome had been institutionalized. That would never have been our choice.

In our ignorance—or wisdom—we raised Billy in the same way we raised our other three children. They became his teachers, prompting his speaking, encouraging his social interaction, teaching him songs and dances. We took Billy everywhere, experiencing the stares that you still endure and yes, becoming angry with rude strangers. I even developed strategies like staring back and in one instance saying, “You seem interested in my son; would you like to meet him?”

The real beginning of my advocacy (the school officials would probably use another word) came when Billy reached school age. The custom at that time was for children with disabilities to attend a special school. In attempting to enroll him at age six, I found that he wouldn’t be eligible until age eight. (Other stipulations were being toilet trained and able to speak his name. He qualified on these requirements.)

Billy’s younger sister was entering kindergarten at age five. How could Billy be denied school entrance at age six when he clearly needed educational benefits? How could I explain that to him?

I found that at that time, in Georgia, certification or a college degree was not required for kindergarten teachers. Mustering my courage, I applied for and obtained a position as a kindergarten teacher in a local school. With the help of my daughter and her daily experiences at another school, I became a teacher, with Billy entered in a class adjoining mine. We were pioneers in inclusion, which became a passion of mine and which determined my new career. Billy blossomed and we were sure that the next year, when he was eligible for the special school, he would really learn.

The teachers at the special school were kind and patient, and required little from the students except that they play well together. I wanted my child to learn! At home, we made picture word cards, played games, and counted everything (just recently my other children and I shared the habit that each of us had acquired; even now we count pills, slices of cucumber, everything we do).

We established a Cub Scout group in a garage, started a Sunday School class for exceptional children at our church, and did everything we could imagine to help Billy learn to interact with other children in organized settings.

What Billy really needed was the opportunity to be part of a good school. In the 1950s that didn’t seem possible. Only through parent advocacy and determination did educational services for children with disabilities evolve. Such advocacy and persistence are still necessary to insure that good education, in the least restrictive environment, will continue.

Raising a child with a disability is a tremendous challenge but I can assure you, from decades as a parent and a professional, the rewards are great. Billy and I rely on each other in many ways: he folds my linen and I cover his over drafts. In all honesty, I can join him when he says, “I got a good life.”

Please, share your thoughts with Jane—and like this amazing woman's Facebook page.