By Jean Bugbee, Parent
Reprinted with permission from Future Reflections, Winter/Spring 2006
Abstract: A parent shares her journey in encouraging her daughter's learning through play 'on her own terms at home and at school' to illustrate the importance of respecting our children for who they are, communicating with them the way they communicate, supporting their learning in the way they learn, and being mindful of whose goals we are trying to achieve.
Key Words: family, blind, active learning, communication, concept development, educational programming
Editor's Note: The following article is edited from a presentation given at the North American Active Learning Convention sponsored by the Lilliworks Foundation, February, 2005.
In 1983, I adopted my daughter Renee. I was single; I had experience working with disabled adults but not a clue about babies. Renee was five-and-half-years-old, weighed thirty-five pounds, functioned at about the nine-months level, and was very cute. When she smiled and reached out her hands to be picked up, it was love at first sight.
Renee was injured by a medical mistake when she was fourteen-days-old in 1978. She has moderate cerebral palsy, mental retardation, epilepsy, and hydrocephalus that is controlled with a shunt. She has no ability to suck, and had a great deal of difficulty mastering swallowing. She went from the hospital to a medical foster home at age sixteen months. She sat up alone when she was four-years-old, and crawled and walked holding hands at age five. Today, she is twenty-six-years-old, and still walks that way.
I met her at her special school. It had lots of equipment for training severally disabled children. Her IEP goals were to stack blocks, stack rings, work shape sorters, brush her teeth, brush her hair, use the toilet, feed herself, walk, and talk. They used patterning, modeling, hand-over-hand modeling, and verbal and physical prompting. None of it was working.
She was throwing, banging, and dropping things; mouthing objects; taking off her clothes; pulling hair; grabbing people's glasses (and anything else she could grab); and vocalizing at the top of her lungs - all with great joy and gusto.
I took her home, but it took two months to convince her social worker it was OK. It was "Catch 22." Only a crazy person would want this kid, and they don't give kids to crazy people. She had a great foster home. Her foster mother was a retired physical therapist. She was surrounded by love, which was good 'but she was also always surrounded by her crib, play pen, high chair, or stroller' which was not so good.
Our first few weeks together were an incredible learning experience for me. She threw her bottle over and over again, so I got her a tippy cup. I put her in her play-pen with lots of toys. She threw them all out, so I put her outside of the playpen and she filled it up. I let her take my hands and lead me around the house to explore things. I made the house Renee safe. I put her mattress on the floor, put a baby gate on her door (so I could sleep at night), and I turned her loose.
When she showed interest in something, I got more of that type of thing. She likes "busy boxes" so I started collecting them for her, and I continue to search for things that interest her. The house was a wreck, but she was busy and happy. This went on for over two years. We were having a lot of fun, but I was worried that I wasn't doing it right.
For years the teachers told me that she had to learn sorting and staking skills so she would do well on IQ tests. The school also offered Renee functional skills training, like teeth brushing and toilet training When she wasn't making enough growth in sorting, stacking, and functional skills, the doctors and teachers said that either I wasn't trying hard enough or she was just too retarded (or both).
Somewhere along the line I realized that everything she really knew how to do, she had learned from her own play. She had to be motivated by the activity in order to do it. She liked sound, so she banged, dropped, played with musical toys, vocalized, and shook things to see if they made noise. She liked what she could do with her hands, so she did more of all of the above. As for sorting or stacking, she could care less about those activities. If it didn't make a pleasing sound, why do it? She liked having her hair and teeth brushed by me, so she didn't want to learn to do it herself, even with praise. She didn't seem to have enough language to understand what I wanted, but maybe she didn't care to please me by doing something that was meaningless to her.
I learned to let her show me what she was interested in and what she could do. If she didn't have the component skills and the activity wasn't motivating in itself, she wasn't doing it - period. If I wanted her to learn to do something, I had to provide materials or activities that would develop the essential skills, then make the activity "pay off" for her. I had never heard of Active Learning, but I was doing it.
By middle school, she was the only student at her level of disability in her class. She was one of a kind. I decided I didn't care about IQ tests, and a lot of self-help skills were not going to happen. I was tired of them testing her on what she could not do, instead of valuing what she could do. I used the IEP to protect her rights and opportunities, but didn't expect them to teach her much.
But I persisted in providing her opportunities to learn through play and on her own terms at home, and over time her skills became functional. She turns lights on and off, puts laundry in baskets, garbage in the trash can, and mail in the mailbox. It's her job to carry the plastic basket in the grocery store, put things on the counter (usually with a bang), and carry the bag of groceries home. And Renee communicates with me very well, just not in English.
Today, her adult day program has to have goals, and insists that she must learn to wash her hands. They complained that it took a long time to get her to do it; that she was dependent on a lot of physical and verbal prompts. They worried that they just didn't know how to teach her. I explained that Renee loves to play in the water and wants to get as much attention from the staff as possible. Renee had a goal, too, and she has achieved it. She is retarded, but she isn't stupid.
Renee is very happy. She can do a lot more then anyone ever thought she could. She now "gets" the whole concept of cause and effect. She can feed herself, play for hours without frustration, and hold the hand-held shower. She can take her clothes off, and put socks on her feet and hands. And she thinks the remote control for the automatic garage door is wonderful!
We must remember to respect our children for who they are. Communicate with them the way they communicate. Support their learning in the way they learn, and be mindful of whose goals we are trying to achieve. Raising kids takes love, patience, and a sense of humor. It is also the hardest and most fun you will ever have.