Future Reflections Summer 1992, Vol. 11 No. 3
HOMESCHOOLING THE BLIND, MULTIHANDICAPPED CHILD
by Sandy Karpenko
In the year 1978, we decided to take foster children into our home. The first placement was a darling little 4-year-old. He just melted our hearts, and we think of him often and wonder how his life has turned out so far. The second child we had was a precious blind baby that I picked up right from the hospital at 3 1/2 weeks of age. She had been placed by her parents because they emotionally could not handle the handicaps she faced. She was thought by the doctors to be no more than a vegetable for life, with no guarantee of even being able to sit up or use her hands for anything.
After six months the parents, having no more encouragement from the doctors, extended her care in our home to a year. At the end of the year they were to make a final decision--take her home, place her in a state facility, or release her for adoption. It was a very, very difficult decision for them. It seemed that for them, in their emotional state, it was a "no win" decision either way. They were not uncaring people, or unloving. They had a two-year-old daughter who was a real handful, and the mom was just a "basket case" emotionally. We certainly have a very real understanding of the anguish involved in such a decision. In the end they asked us if we had ever considered adopting their daughter, and we admitted that we had. The following week the papers were drawn up, and the legal process began, making us Sarah's legal parents. She seemed to fit into our family from day one, and our five older children just loved her. They didn't think of her as handicapped--just special, and particularly beautiful.
Sarah was born with an encephalocele (a large sack on the back of her head) containing fibrous tissue and part of her brain. The sack (including the part of her brain) was removed the day after birth. She remains totally blind, is severely retarded, and has been seizure-active since birth. She has Cerebral Palsy which affects her legs in particular. She will bear no weight on her feet to speak of, and moves around by rolling only when it is uncomfortable to stay in one position. She is so content she will literally stay in one position for hours as long as she has something to play with that she enjoys. She is undoubtedly the happiest child I have ever seen, and she gives the best hugs and kisses of anyone in the world! She is happy, outgoing, (even though she says only a dozen or so words), and unusually affectionate—not at all a vegetable.
When Sarah was ten months old we enrolled her in a program through our local school system in Rochester, New York. It was a VIP program (Visually Impaired Preschoolers) in our home, where the physical, occupational, mobility, and speech therapists came directly to us. The therapists were wonderful, and through the tears of objection Sarah began to show signs of improvement. She sat up, rolled over, and objected less to the introduction of new toys. We went two steps forward, one step back, and have continued to do so through the years. Those therapists taught me as well as Sarah, and we followed through with the "teaching" during our hours alone. We will always be thankful for those wonderful people.
Then, it came time for her to go to school. We were now living in the Thousand Island Region of New York, away from the bigger city, and there were fewer options open to us (home schooling never occurred to us at the time). Sarah took a bus thirty-five miles to school and thirty-five miles home each day, falling asleep daily on the bus and being cranky and miserable much of each afternoon because she still needed a nap. We were as frustrated as she but saw no way out. The teachers seemed to be less than professional in general, and there just didn't seem to be the right placement for her. They put her where they thought best, but it was never right for her.
Then we began to see in the Bible where parents were really the ones responsible for the raising of their children. We had a family in our church who was interested in home schooling, and the pastor asked if I would help her get information. I did. And she got all set and started teaching. Finally, the Lord sort of tapped us on the shoulder and said "Hey, what makes Sarah any different? She's a child and you're responsible for her. So what if she's handicapped? Deuteronomy 6:6,7 was written for her as well as the next child." That was it. Within a week, we took her out of school. It was the middle of an optional summer program, and it was not necessary to inform the school of the reason for her absence.
We contacted HSLDA (Home School Legal Defense Association) and were sent an application form. We completed it and then, the week before school began, we sent our letter of intent to home school to the district superintendent. He very quickly replied and made some demands on us (which we knew were not legally required). We very politely refused his offers of "help", and have had no contact since, except for the New York State required quarterly and yearly reports.
It is very easy to home school in New York with a minimum of interference from the school districts as long as you follow the regulations. You don't have to have any special requirements, just a desire to teach your own child and some form of curriculum. We wrote our own from the reports the public school had written, originally using the same goals and methods. We have since changed those goals to some that we feel are more realistic, and Sarah is doing very well. Our goals and achievements have consistently been approved by our district superintendent. Sarah no longer comes home with any unexplained bruises from people probably lifting her incorrectly, and she gets her nap whenever she needs it. And most of all, she is being taught by the people who love her and know her best--her parents. She is being taught how to live in the environment and with the people that will be with her for life, not in a place where we never interact as a family and/or spend leisure time.
We are fortunate here to have a Public Health System that provides us with a respite care. My husband is a pastor, and we sometimes have appointments or services that are just a little too much for Sarah to handle. So we have our hours scheduled each week to fit our schedule at church. We can also call for help if we just want to go out to supper by ourselves, although last minute hours are not easy to get. This is paid by insurance. Unfortunately, most families don't have the advantage of a free service like this, and we count ourselves extremely blessed.
We firmly believe that Sarah lost much valuable time while attending public school special education classes. She had a teacher for two years who was qualified to bag groceries at best, and all the complaining to the head of the board of education got us parents nowhere until she was fired at the end of the second year. Meanwhile, our children had become stagnant, some even regressing (like Sarah), and we were helpless to do a thing. Sarah then had a wonderful, dedicated teacher who had a tremendous amount to make up for in what was lost in the previous two years. But it still was not the best situation for our daughter. Her stubbornness had only been compounded, and eating was a fight to the finish at most meals. (The former teacher had stood behind the wheel chair, arm under Sarah's chin, and force-fed her while she screamed). She would literally starve to death willingly. We had a lot of "undoing" to do before we could go forward very much.
I tried to be very structured in the beginning. I started at 8:00 a.m. and stopped at 11:30 a.m., and worked for an hour or two after nap--Yuk! It didn't work. I found I was being a slave to the clock, and Sarah wasn't having any fun. Now we do certain things like learning body parts while she gets dressed or she sits on the edge of the bed for a few minutes to do some balancing, a few leg stretches, range of motion exercises, and then into her wheelchair. She works on feeding herself her cereal (doing great), and then a little seat work, which for her is playing my autoharp or guitar (small finger muscle exercise). Then, maybe she'll take pegs out of the board or finger paint with chocolate pudding (not one of her favorites)! Then she does a little standing while supported between my legs, and then some hopping on the edge of the couch. Then she's free on the floor to play the rest of the morning while I get the dishes done, beds made, or whatever other things need to be tended. When she gets bored, then it's time to do some more work. We keep it flexible and do lots of things that wouldn't be done as a regular part of the curriculum at school, as you can imagine. It seems that a child like Sarah will find a toy and want to play with nothing else all day. At first I was not allowing her to do this, but now I find that she's happier and easier to work with (like all of us) when she's having a good time. Some days we never get to gross motor skills, and some days we sing all day long—joyful noises to the Lord! We put in our required hours along the way-- some days more, some days less--but Sarah is happy, rested, and being taught by loving parents, the way it was meant to be.
New York requires 900 hours of teaching a year, from July 1st to July 1st, and we have never had a problem achieving this. Her education is in just about everything we do, from morning to night. Do I ever want to quit? Sure! But then I think of the commands the Lord gave us, and I think of the bruises, and the napless days and long hours for Sarah, and teachers who will force feed her and let her cry while they stand around drinking Pepsi, and I change my mind so fast. This is the child the Lord gave us, a very special child who needs very special care, and I wouldn't dream of changing a thing.
Home schooling isn't going to be for everyone. I realize this. But some parents may have never considered it as an option at all. There are agencies to help with therapy, and in our state I could even take her to the school just for the therapies she needs. There are now national networks just for handicapped home schoolers. There are local support groups all over the country to assist the growing number of parents who desire to school their children at home; and there is an increase in the curriculums available, enabling parents to fit the curriculum to any child's specific needs. This is the bottom line--a child's specific needs. If your child is not thriving, or if you feel the school placement isn't right and a right one is not available where you live, home schooling may be just the answer for you.