Jadene Sloan Ransdell
Originally published October 1, 2014
After my first post, I thought it is important that readers get to know who Matt is, because he is so much more than all his diagnoses. Before I share what is happening with Matt as he ages, I want to tell about his life that brought us here.
When Matt was six weeks old, our pediatrician called and asked that both my husband, Joe, and I meet with him the next day to discuss the results of a test that had been done in the hospital. We were shown some photographs of the additional piece of the 21st chromosome; in medical terms we had a baby who was "Mongoloid," the label in vogue in 1974. We were encouraged to place Matt in a state institution that same day, as some pretty low expectations were set for Matt. Dr. K told us that Matt would never be toilet-trained, would never learn to feed himself, would probably never learn to walk and would always be a burden. We were told that having Matt in our home would cause psychological problems for our older son, Michael, and would put so much stress on our relationship that we would eventually divorce. Dr. K. said, "These children are just like puppy dogs; the longer they are around the more attached we become to them."
We didn't listen; Matt stayed in our home where he belonged. He was a beautiful baby and an adorable toddler. Many people had trouble believing that he had Down syndrome. He was so easy to care for and everyone who saw him fell in love immediately. We lived in Ft. Benning, GA when Matt attended a preschool program for children with disabilities. He left our home a tiny boy, secured in a plastic car seat and I was sure he would come back to me filled with new skills and a large vocabulary. During his year in this program, he was in a bus accident. It took the Army Transportation Group hours to finally reach us and tell us that our "baby" was at the emergency room at Martin Army Hospital. When we arrived we learned that the mini-van had been hit by a logging truck; I didn't want to ever let go of my little guy again. The next day I started advocating to get him into a kindergarten program for children with mentally handicapping conditions. It was a tough battle, but Matt started school the next fall. By then he had stopped using any of the single words he had learned. He began flicking his nose with his right index finger, sometimes so much that his little face looked like it had a very red strawberry sitting on it. I tried to get him to stop that injurious behavior and finally succeeded...only to have it replaced with him tapping the edge of playing cards with the tip of his index finger. I learned quickly that eliminating one repetitive behavior would only lead to another one.
When he was three years old, Matt took his first steps. He was physically small and it was another three or four years before he could walk very far; in fact, his kindergarten teacher would carry him from the classroom to the cafeteria every day at lunch time. We were stationed in Germany when I proudly sent an announcement to my girlfriend to share that Matt was finally toilet trained at age nine. There had been a lot of yucky diapers and I was ecstatic to put that delightful chore behind me.
Matt learned to feed himself, too. His favorite meal was canned Spaghetti-O's eaten not so neatly with his favorite spoon...the one the previous owners of our house lost under the kitchen stove. I debated for a couple of weeks about contacting them to return it, but when Matt would only eat with that spoon, I couldn't take it away from him. We kept a rather large piece of clear vinyl under his chair for many years, just to keep the mess somewhat contained. By then, we were pretty attached to Matt and we had adopted a rather large puppy from the SPCA. Our floppy, clumsy yellow lab, to whom we were also attached, quickly found a job cleaning the plastic of all the tasty morsels Matt dropped on the floor.
Based on the relationship Michael had and still has with his brother, I don't believe there was any psychological damage done. Yes, Michael missed out on getting both mom and dad to attend his baseball games and there were times we needed Michael to keep an eye on his brother because we had no one else to call on. I never knew for sure what Michael felt when we had to place Matt in a residential school while we were stationed in Germany. I have a pretty good idea, however, because it was Michael who insisted that Matt should not live in a group home when we were making that decision upon our return from Germany. Michael was in middle school at that time and I often reflected on how difficult life is for teenagers. I was quite pleased when he told me that if any of his friends didn't like Matt or didn't want to be around him they didn't need to be his friend. All the professionals, both in Germany and here in Florida, insisted the structure of a group home was what was best for Matt, but Michael was pretty adamant when he said, "Mom, Matt deserves to live here with us. After all he is part of this family." That was it; decision made...and no psychological scars.
Matt first developed some troubling behaviors when we lived in Germany. He broke a window in his bedroom by throwing a stuffed teddy bear at it. One night he decided he liked art and "painted" his wall with the contents of his diaper. What a smelly, nasty mess! He would clutch curtains and children's art work on the school walls, bringing them down with a quick yank. He grabbed his brother's hamster and squeezed it before I could get it away from him. Michael was, naturally, quite upset when he learned his hamster had died.
We tried several medications to control the behaviors; each one had its problems and Matt's reactions were not typical. The psychiatrist insisted that Ritalin was not a hallucinogenic, however, every day, 20 minutes after he took it, he would reach out and try to grab something in front of him...something that wasn't there. Eventually, Matt ended up on Haldol. Now that is a scary drug!
When we moved back to the states, we had to find a psychiatrist who would follow Matt and prescribe the medication he needed. I won't go into all the gory details, but let's just say that this doctor was afraid of Matt. When he walked in, during our office visits, he would stay very close to the wall opposite where we sat and quickly sit behind his desk. He put more value on the reports of Matt's classroom teacher than what Joe and I told him. At each appointment, the Haldol dosage was increased and Mellaril was added. Later, Matt developed a physical reaction to the Haldol called tardive dyskinesia; another medication was added. I was concerned about the amount of psychotropic drugs Matt was being given and kept reporting that the drugs were having an opposite effect than what was expected. It seemed that the more medication he received, the more troubling the behaviors became. Of course, the psychiatrist didn't listen. Eventually, I decided I had to get Matt off these medications and found out how to do it safely. Once he was drug free (it took me about 6 months to get him off all three medications) Matt was like a different child. I had my sweet, happy boy back.
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