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Steven Jr.
Steven Jr. was born in 1977 with cerebral palsy.
When family members found out about his disability I was fascinated how each of them seemed to be concerned about only a certain aspect of his condition. Some were worried that he would never walk, some were concerned he would never talk, and some were concerned that he wouldn’t be able to care for himself. My main concern was that he would have all of his mental capabilities. Even if his limbs wouldn’t work for him, I knew that if he had a normal mind, he could do anything he wanted to do.
The brain damage was to the left side of his brain and his central nervous system. Chances of his ever talking were slim. He was classified as quadriplegic, meaning that his whole body was affected. The only limb that he could control well was his left arm and hand.
Crawling was out of the question, he didn’t have the body control to even get into a crawling position. We showed him how to move his left arm out of the way and he just rolled to where he wanted to go. He soon discovered he could lay on his back, push with his legs and get to where he wanted to go much faster. He had a perpetual bald spot on the back of his head from scooting around the house. It may have been unorthodox, but it worked.
By the age of 2, he was facing his first surgery. His legs were spastic and held so tightly together it was impossible for him to sit up unassisted. His hips were so tight, the balls of his hip joints were slipping out of the sockets. The orthopedic surgeon cut the tendons and nerves. It was another 2 years of physical therapy before he finally was able to sit up completely by himself. By this time, he was able to do a sort of “combat crawl” with one arm. The evening he sat up for the first time by himself, he had crawled out in front of the TV, his favorite past time, and just pushed himself up into a sitting position. We were flabbergasted. We cried, we laughed and all of our family and friends must have thought we had lost our minds as we phoned each of them to announce that JR had sat up by himself for the first time!
It would break my heart, as I would watch him awkwardly climb up on the couch and watch through the living room window as his brothers, sister and neighbor kids ran and played outside. Only having the use of one arm and hand he couldn’t maneuver a manual wheelchair. For his birthday one-year we gave him a skateboard. Our families thought we were crazy, but he quickly figured out he could lie on it, push with his one hand and legs, and up and down the sidewalk he would go. He was thrilled. He couldn’t keep his balance on the tricycle we had bought him, but he found he could put his knees on the bottom plate, kind a half lay on the seat, steer with his left arm and push himself along. Again, up and down the sidewalk he would go. He was now one of those kids playing and having so much fun outside.
He received his first electric wheelchair when he was 6 years old. The freedom he had suddenly acquired was so exciting. He could now go anywhere he wanted to go and was no longer dependent on who was
Communication has been an interesting challenge for him. Because of where the brain damage was he has never been able to speak. Traditional sign language is mostly done using two hands. Since JR only has use of one hand, we had to modify his signing for him. He has had three different electronic communicators over the years. The first one I called the “$2,000 Toy". We would spend weeks programming words and phrases into it phonetically, just to have it malfunction and erase all of that hard work. The next one he had came with everything already programmed into it. It didn't’ speak for him but instead put out a printed strip of what he wanted to say. It worked well until one day while he was sitting in class, it started to smoke, and the paper strip caught on fire. We called the company and were not surprised to find they had gone out of business. The device he has now, speaks for him, has an LED screen and never malfunctions. I guess technology has finally caught up with his communication needs.
JR started school when he was 7 months old. I took him several times a week for physical and occupational therapy that taught his father and I to handle him properly. He needed daily exercising to keep his limbs as loose as possible.
When he was old enough to attend school by himself he was placed in special day classes for multi-handicapped children. The school he attended was over 30 miles away, which meant he spent almost 3 hours a day on a school bus. Each time we attended his yearly Individual Education Plan meeting we would ask if he could be mainstreamed into a regular class in our local school district. Each time we would be given a list of reasons why they couldn’t accommodate him because of all of his special needs. When he was 11 years old, it was becoming apparent that the education system was failing him academically. He could only do pre math and was reading at a 2nd grade level. This was a child that at 4 years we were told was mentally gifted. My husband and I were feeling very frustrated as we sat in his yearly IEP meeting that year. We had been told that no he couldn’t be mainstreamed so many times in the past, we could hardly believe our ears when Jerri Murphy, the new Director of Special Education at our local school district said, “Yes, I think we can accommodate him and his needs.” He was given an aide to interpret signing for him and a special desk that his wheelchair would fit under. Because he was so far behind academically and would need so much extra help to catch up, it was decided that the school he would be attending would ask for a 5th grade teacher to volunteer to take him on. At that meeting a very special teacher, Larry Partain stepped forward and said he would be glad to take on the challenge. With an unbelievable amount of hard work from JR and Larry Partain’s help, encouragement and great teaching methods JR was able to catch up to a 5th grade level in one year! In high school a keyboarding teacher Mr. Andrews took on the challenge to teach JR how to type with one hand. JR graduated from high school, is now attending college and
JR’s father and I made the decision long ago that JR may have a disability, but we were never going to allow him to be handicapped. We have expected him to do everything that his body would allow him to do. Consequently, JR is fiercely independent and is a very determined young man. He knows that the sky is the limit and he keeps reaching for it in everything he does.
Music
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