Misty and Joshua's school classroom.
The arrows point to my children!
Since Misty had learned to know me at last, and she was five years old, I decided to put her in the public school system and see if they could teach her something I could not. Perhaps she was ready now, and able to make a little progress that I might not know how to help her make.
I went to visit. I got to know the head teacher, Cilla, who was absolutely wonderful. I saw all the fascinating, fancy things they had there, to try to help every child learn whatever they could. I put her in.
I visited often. I watched them work with her. My Misty always spent her days, shifting her eyes back and forth. She would look to the left, and then to the right, all day, every day. I noticed that the teachers would hold toys to one side of her, and every time her eyes moved that direction, they would tell her what a good girl she was! I wondered if they were mistaken, or if I was. I did not believe she was looking at the toys. I did not believe she saw anything any more. But I could understand the concept of encouraging her, just in case she WAS registering what she saw. Perhaps she could learn to register what she saw.
They put an pad like a four inch button on her wheelchair tray. If she so much as touched it by accident, it would make a toy move, and make noise, or play music. If a child couldn’t see, they could hear it. If they couldn’t hear, they could see it. Misty’s trouble was, she could not learn to touch the pad on purpose. It was always by accident, as far as I could see.
The teachers and therapists tried many things, to help my daughter learn. I appreciated them all.
But the thing that made me sad, as the years went by, was that after school was on for several weeks, she definitely recognized and responded to her teacher Cilla, but forgot me. Her horrified quivering and shrieking at every touch came back. This was deeply upsetting to me.
After summer was on for a few weeks, she always learned to know me again. Then the house rang again with her bell-like giggles for me, like she always used to. It seemed she could only remember one person at a time - the one who spent the most time with her each day.
Christmas and spring vacations, she just seemed kind of lost. She couldn't learn me over again that fast.
Misty enjoyed camping, and we camped every time we could. Every spring vacation we camped for nine days. Every summer, we traveled to many states, and camped. Behind our van, I pulled a 27 foot Wilderness bunkhouse trailer, and we had built in extra beds, so it was packed to the gills, but we all had tons of fun. No phones, no doctors, no hospitals, no stress, just fun, fun, fun! I just about lived for summers. My children with mental retardation made more progress in the summers than during the school year. They particularly improved their language skills. I spent so much time talking to them, and they, to each other.
Eventually, I made the decision to home school my children. Just one, at first, in a school crisis. Then, as I developed a program for the ones who were very unhappy in school, one more, two more, and our little classroom grew. It was the best decision I ever made, as a parent. It was marvelous!
Gone were the hours spent per day spent sending five bus loads of children off to five different schools in the city, and reeling in exhausted, crabby bus-loads of children three times a day. As it had been every summer, we got to get up peacefully, eat leisurely, and learn together. I had the time to read to them every day, with nothing rushing us. My children began to learn like they never had before.
I had never known my children so well, and they had never had so much time to tell us what they felt, who they were, and what they were interested in. It was beyond description. I felt like I was spiraling into a sky full of joy, each year better than the one before! I was able to watch my children learn beside me, and together, and was having more fun parenting than I had ever had before.
We made new friends - other home schoolers - and had countless field trips together.
So it was, that there came a time when I was home schooling all my children except Misty. Even though Misty’s school was wonderful, I took her out at last, as she had not learned anything at all, except how to forget her mommy. I kept her near me, and she remembered me for the rest of her life. We had rich years of giggling together. Another good side effect, was that she no longer caught all the diseases that her classmates had given her. Some parents of children like Misty sent their children to school, sick or not. These children would be on the bus in dirty, wet pajamas, unbrushed hair; coughing, sneezing, runny nosed. Next thing I knew, Misty and Joshua would be sick too, and I always kept them home when they was sick. I felt discouraged that my children were sick so often, with things they caught from school. Her teacher explained to me that many parents with children like Misty felt overwhelmed. They had given birth to their child. They were working, and there was no day care available anywhere for children like this - especially sick ones. So at school, the teachers would bathe them, give them breakfast, put on the extra clothes all parents had to keep at school, and try to keep them away from the well children.
I could understand the problem. The teachers and helpers in the class, caring for the up to twenty-seven or so children, from ages three through twelve, were exceptional people. I was very grateful for all the time they spent with Misty, and the cute pictures they took of her for me.
By the time Misty was seven, she had grown to be a big girl! She was round and healthy, and was two years into an early puberty. Gone were the days when she felt like a feather, and hung like a noodle. I had obtained a hospital crib for her, which I painted bright orange, and she was at waist height for me to work with then, which was handy.
One very helpful thing I had installed, was a second bathtub above the regular one in the back bathroom. This way I could bathe her at waist height too, which took away the strain on my back. I could carry her with no problem, and get her in and out of her wheelchair, because its seat too, was high off the ground, at my request. I had a Hoyer lift, which I could use to put her on the floor, and get her up again, but she never did care for that, so I did it less and less.
At home, above her hospital crib were posters that read things like “All my tomorrows depend upon your love.” And, “Real love is not expecting anything in return.” Misty had taught me a kind of love I had never known before. Pure and unconditional. She was my little teacher, sent from God.
Another wonderful thing about home schooling was that, at last we were free to camp all year round, except when it snowed. We could see so much more of our world. The most wonderful part of life was traveling. Every single child loved it. We sang together as we traveled down the road, quoted poetry together, and chanted the arithmetic tables. Everyone who could see, gazed and drank in the mountains, the ocean, the deserts, and every kind of beautiful nature we could find. It was just a marvelous time of life.
Misty always remained a great traveler. She "mu-ha-ha’d," smiled, drooled, jerked, and just was her normal happy bubbly self. She never complained. She never argued with her siblings. She never whined for a hamburger. She never had to use the bathroom. She never asked when we were going to get there! Oh, there were lots of things to appreciate about this little daughter! We all loved Misty. She was accepted just for who she was, by one and all. No one expected her to be anyone else than her own sweet self. She had already fulfilled all my hopes for her - she knew me, and she was able to receive joy from me, and her siblings who played with her.
As the years went by, Misty's body slowly became stiffer. I had to cut every new lovely dress down the back, and sew on tiny hooks to hold it closed. That was the only way I could get dresses on her any more, she was so stiff. I did range of motion exercises with her, which she didn’t mind any more, but they did no good that I could tell. Her brain damage was making her become stiff.
Misty had brothers and sisters around her all the time. She was a joyful little girl. She was a central part of our family, and our lives.
I held Misty in our big old rocking chair in the living room, and rocked her, and though she was becoming more stiff, and harder to hold, and still did her sudden jerk thing, she cuddled happily in between jerks.
I climbed into her big hospital crib often, and held her. She let me hold her on my lap, and laughed with me while I tickled her tummy. She went many places with us, in her wheelchair.
By ten years old, Misty had a wheelchair that tipped backward with a small motor, so that her skin would not break down, and also, when she dozed in the chair when we was out, I could tip her backward, and she would be comfortable. These were wonderful, happy years!
(C) 2002 Rosemary J. Gwaltney