Lately I've been thinking about raising my children; well still raising, Samantha is 17. I think about Thomas of course and the inexcusable and inappropriate treatment I received from the many professionals and experts I sought help from for Thomas. I get angry. Even after all these years. There are some physicians who are still in practice and I truly wonder how they still have a license to practice. Not because of how they either misdiagnosed or did not diagnose my child, but because of the many other children they gave poor medical care to either before they saw my child or after. Parents talk.
Raising Alyssa and Lelly in retrospect was very nice. They were very typical girls. They met all their milestones ridiculously on time or early. Lelly was my early walker at 11 months and then she began to run! She's been on the move ever since. Alyssa as a child was very sweet and thoughtful. As an adult her personality is the same. Most importantly my Lelly and Alyssa allowed me to know what it was like to simply watch them *be* so typical and I loved to be part of their typical lives, I still love being with them and watching what comes next.
Many parent of special needs children say they wouldn't change a thing. Whether it be that they wouldn't change their child or they wouldn't change their lives with their child. There are many things I would change. I won't make a list. I wouldn't change the way we raised Thomas, not knowing what was wrong made Tommy and I treat Thomas as more typical than he was. We weren't given a correct diagnosis until he was 12 years old.
I would change that I stayed with his pediatrician much longer than I should have. It was only after we left the practice did I fully realize the depth of her belief that there was nothing seriously wrong going on with Thomas. At first, she refused to give me a copy of his chart; yes that is illegal. It was t until I wrote a certified letter giving her a date that I would come to get his chart that suddenly the chart was made available. And then I read parts of her notes. Notes about me. In my son's chart. Not good. We had already established care for all our children with another pediatrician. One who we adored. She knew I was having trouble getting a copy of Thomas' chart and by the time I got a hold of it I refused to give it to the new pediatrician. She had his immunization records and copies of reports from multiple specialists. That was fine.
I could go on… ok one more instance. When Thomas was 6, I requested a referral to a psychiatrist. She said she didn't have one. So I searched and searched online until I found a specialist child psychiatrist in Manhattan. Of course he did not take insurance but who cared at that point. This doctor requested all the reports from other specialists/physicians as well as reports and the pictures of MRI's and EEG's that were completed. I had kept a diary/ log of Thomas' behavior that he wanted to see. When the psychiatrist diagnosed Thomas along with appropriate medication to treat, Tommy and I agreed to follow his recommendations. I called the pediatrician and filled her in on what the psychiatrist said. Well it was a miracle… because she suddenly had a psych referral. I was speechless and said, I thought you didn't know anyone? No thank you we like this doctor.
Life was very hectic back in the day. The thought of trying to find another pediatrician was overwhelming even though I was treated and viewed so poorly. When I did leave that practice it was such a feeling of relief. I only wished I made that decision sooner.
I can't change Thomas, nor would I want to. I learned so much from being Thomas' mom and met people I never would have crossed paths with otherwise. If I could go back and change him, my life would not be as it is now. I have a good life. There were many dark seasons and storms but God placed particular people in our path and they held lanterns to light the way and/or simply walked beside us lending strength.
When we requested to have Thomas be transferred to District 75 (special education district) and attend The Hungerford School at age 12, it was wonderful. No one ever recommended District 75. At every IEP meeting it was recommended that Thomas stay in District 31 which is for typical children and attend a special education class of 12 students/one teacher and one paraprofessional. That was so very wrong and completely inappropriate for his educational needs. But…no one told us about District 75, ever. And how wonderful it would be for Thomas.
So there's a part of mind and Thomas' story.
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