Today I was thinking about the decision I came to about seven years ago. My son was about twelve years old. Our family had been through some real difficult couple of years, caring and losing my husband's father, a difficult surgery for me with complications, a job loss, a move, a career change, and we then we decided to move to east Tennessee for my husband to go back to the university. Once we got settled in, we began to realize how much difficulty our son was having coping with life. Remember, we still didn't know the full diagnosis. We had been told bi-polarity, but that was all. That's when I really started to notice my son's behavior, moods, facial expressions, routines, and inability to cope with daily life. He had very little quality of life whatsoever. One day, something in me snapped into reality, and the decision was made. I was going to make sure I helped my son learn to cope with life whatever it took. I was going to do whatever I could to help him develop at the best level possible. Little did I know then the sacrifice, time, commitment, or determination it would cost me, my husband, or my family or the people I would have to fight to insure the best for my son.
This decision has led us to do what some might call radical behavior. Although we home-educated for years, my oldest was going to public high school. We had thought that our son would benefit greater from a public Jr. high with some assistance. The school did all the testing and because he was so intelligent, they really didn't see the need for too much assistance. I learned fast that those IEP (Individual Education Plan) meetings took lots of time and guts from me to step up and insure my son was getting what he needed. We did a year. We had to increase meds probably 6-7 times. His anxiety levels were off the charts even with constant adjustments to his schedule and classes. He didn't improve in any area of importance to quality of life. We went back to homeschooling despite opposition from the school saying we couldn't offer our special needs son what he needed. WRONG! I went to his developmental pediatrician, asked for some therapists. We found a pediatric occupational therapist in our city, had a thorough evaluation and started seeing them 2 full hours a week. We found someone in a near by city for counseling and life coping skills and took him there for 1 hour week.
Did it get tiresome? Yes. All of these were with the all of the visits to the specialist who did repeated blood work, tests, evaluations on him every few weeks. This went on for a couple of years and we started to see improvement in his quality of life.
Currently, we do almost the same and have since we moved to Nashville. We see a therapist for life coping skills for an hour a week, an OT for a hour a week, and his psychiatrist for medications and tests. It takes at least one day every week, sometimes two days. The decision to help him achieve his highest functioning level keeps us diligent to these tasks. We continue to see advancement in quality of life. It is a slow process for developmentally or mentally ill children, but it can happen. I believe and so do people very close to us, that the steps we have made have paid off enormously for my son. He is functioning at a much higher level. His communication skills have increased tremendously. Is he where he can be? No. Our mission is still to continue to help him achieve the highest functioning level possible. We believe our steps have been ordered and supported by our Heavenly Father.
I know it's a huge commitment. You will have to sacrifice. It may consume your schedule. Make the decision to help your child reach their highest functioning level whatever it takes. Your choices or steps are your own, as the needs of your child will be different than any other. Do what you can. It will make a huge difference several years down the road.
Be strong and courageous!
Lynne
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