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My Decision to Home School My Disabled Children

Excerpted from an article I wrote, that was published in “Growing Without Schooling” in 1989. I rewrote it in 2004.

 It takes some searching to find material written by or for parents who are home schooling children with disabilities. Our society has tried so hard to brainwash parents of children who have a disability, it’s a wonder anyone ever dared to challenge it. But laws have changed now, giving parents of every child, a choice, thank God.

 Lest I sound like some crazy fanatic, please allow me to explain. I've lived long enough to see our culture change. Our society, with its many strengths, has a history of swinging to wild extremes in some areas. How it handles the birth of a disabled child is one of these areas. Forty years ago, and even less, a parent of a newborn who was mentally retarded, was pushed to give her baby to an institution. Often, parents were advised to simply let the baby die. Many times the new mother was not even permitted to see her baby, or go to its funeral. This happened to my own grandmother. It was believed that such a child would "ruin" the normal children in a family.

 Now, society has swung in the other direction. To be more accurate, it has become rather schizophrenic! At birth, the mother-child bonding of a newborn with disabilities is routinely interrupted by well-meaning professionals. The message they give the new mother is virtually that her new baby is so different from most babies, her mother-instincts are no longer good enough. That she will be unable to properly raise this child without professional guidance. This, at the very same time as the big push to discover through tests, whether a baby has a disability before they are born, in order to abort him or her!

 There are many things the new mother does need to learn, to parent this baby well. But they are pushed on her too hard in my experience. I realize this sounds negative, but the forceful insistence that disabled babies go to school, has impacted many mothers the way it did me. While a baby with a disability is different, and certainly has special needs, he or she is still a baby first and foremost. I know there are mothers who need and appreciate intensive intervention. Mothers who can benefit from time away from their baby. However, I am personally acquainted with many who find it a tremendous disruption to their family, without appreciable benefit to their baby. There are many things to learn, but I believe a home program would have been much better for my family. I experienced that one time, and enjoyed it through and through!

 I wanted to learn, and did learn a great deal from the teachers, about infant stimulation, and from intelligent and interesting therapists about speech therapy, and range of motion exercises, etc. But my babies screamed and cried so much in school, that I was upset every day too. After bringing my baby to the infant stimulation class, I had to sit in the waiting room for two and a half hours every morning, listening to my child sob, scream and roar on the other side of the partition. This was very traumatic to me, but there was no place to go close by. I felt like I was betraying my child. Then, I had to drive my exhausted baby back home where she would sleep all afternoon. I felt as though I were robbed of my baby's babyhood, and all those hours I wanted to devote to my baby while the others were at school. Eventually, I decided to do it myself with my little ones. This was infinitely more rewarding and fun for me, and for my babies. It took me three daughters, though, before I figured this out for myself. One child with Spina Bifida, one with Down's Syndrome, and one with profound mental retardation and Cerebral Palsy.

 When children are babies, the school programs involve the parents. They have to drive their baby, and also try to implement the teacher's directions, whether they agree or not. By the time the child is 3, however, somehow the parents' only purpose is to get their child out the door, to the bus, and to reel the child back in four, or eight hours later, depending on the law of the year. My children came home exhausted and crabby. I was not impressed with the crowded classrooms, and the bizarre behaviors my children were copying, from classmates, and children on the bus. I saw very little positive learning going on, for my children with mental retardation, and Cerebral Palsy. Children with severe behavior disorders were scattered through the classes, one or two per eight students. But one of these children is enough to disrupt much learning in a class of non-ambulatory, mostly non-verbal children. I knew several teachers who admitted being frustrated by this too.

 One of my daughters with Down's Syndrome was privileged to attend a class that was made possible through government funding. It was in the Experimental Education Unit at the University of Washington. She went there for three years in the early '70s, and it was wonderful. That was my first experience with school for disabled children, and I learned enormous amounts. I was allowed to watch my little girl learning, from the other side of a one-way window. The marvelous things I learned there, on how to teach in a positive way, benefited all my children, ever since. My grown daughter now uses some of their methods with her own son, who does not have a disability. "Good talking!" I heard her exclaim recently, to her seven month old son! If only all school experiences could be like this!

 I was aware of one class where truly wonderful things were going on, year after year, and still are! It was the one for all the children in the county who were profoundly retarded, ages three through twelve. This class had many teachers and aids. The head teacher was a wonderful, gifted lady named Cilla. (I am still in touch with her.) It was held in an enormous classroom, with many partitions for individual work. It had around twenty-eight students each year. It was a bright and cheerful place, where each child was really loved, and every tiny step of progress was rejoiced over. Cilla took pictures in class of each child, every year, to send home to their parents! Now this class was fascinating to visit, and I learned more there, than in any other class. No child was permitted to hurt or frighten another, and each one had learning experiences created and implemented just for them. It was very much like home school.

 Unfortunately, the majority of classes can not be like that. I sent my children to school because, like most, I believed I had no choice. During those 14 years, I had contact with over 144 teachers, most of whom I liked. Then of course, there were the aids, therapists, bus drivers, and all the others involved in my children’s education. (That’s not counting all the doctors, nurses, etc., who kept in contact with the school from the hospital clinics!) I learned a lot from my children's IEP conferences, but could not truly influence much of anything. The school system doesn't have the time or inclination to alter their ways just because of a parent's opinions. Eventually I stopped trying to change things. I hated sending my children to school, but I kept silent. I lived for spring vacation, and summer. Much joyful time was spent in planning our long, wonderful camping trips during these free times.

 I had a burning desire to have time to enjoy my children, to know each one well. In the summers, we read books, went camping, talked endlessly. We played together in a kind of non-stop marathon to make up for lost time. We all slept together in our huge living room at times in a giant slumber party, just for fun.

 Each child made progress in the summer, especially with speech. They grew close to each other. They had time to become true friends with each other. They began to play creatively, to show interests in things they hadn’t before. Joy sparkled in their eyes. As months went on, they dropped all the weird behaviors they had learned from their classmates and from the children on the buses. They became interested in stories I read them. They no longer acted exhausted and burned out.

 Every fall, they all slid downhill again. I knew something was terribly wrong. Why would they learn all these good things and make these marvelous changes in the summer when all we were doing was playing? Why did they NOT make these improvements during the nine months I struggled to keep them well in their classes, color-coordinated and with a warm breakfast inside? Was all this effort worthwhile? I knew the answer was no. The only thing missing was a solution.

 A crisis brought it all to a head. One mentally retarded son had been sexually molested in his mainstreamed middle school by a group of "normal" boys. I kept him home as he talked about it, and sobbed out his rage and humiliation for weeks. The school district was uncaring. They refused to even believe my son. Their position was that he had to be mainstreamed anyway. They would not budge from this position. I was determined that this son, who could barely keep his balance enough to walk, would never go back to the crowded halls of a school with 700 "normal" middle schoolers. But I had no idea what to do. Then, one Sunday morning, a Christian lady at church, named Thea, happened to tell me that she home schooled her children. It was a thrill unlike any other, to learn about this. I believed that God had brought the two of us together. I knew immediately that this was what I had waited fourteen long years to hear. Thea and I became close, and lifelong friends.

 I felt excitement, filled with hope - hope that it was, after all, possible to change the wrong to right. And it has worked out just that way. It is a great privilege to watch my children learn at home. They have learned better, more, and with wider experiences than ever before. They have learned to be kind and good friends with each other. We have all the benefits of summer and more, year ‘round.

 Each year there is more information available. There are resources for parents who search. Now there is even a magazine called NATHHAN just for people who home school children with disabilities. While home schooling is obviously not for everyone, the movement is growing at an ever-increasing rate. Home schooling is tremendously rewarding for me, and for my children. Any parent who is interested and concerned, and who wants to home school, should feel secure that it will work. Each family develops the style that works best for their child. I would encourage all parents to carefully, prayerfully seek what is individually best for them, and their children.

(C)1989 and 2004 Rosemary J. Gwaltney