Wednesday, May 12, 2021

Comments by Bebe

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  • My son has congenital heart disease and had his first open heart surgery when he was 5 days old. He recovered very well physically, but I wondered how his early life experiences would affect his brain development. He had some mild developmental delays, but caught up. When he started elementary school, he had problems with the motor aspects of writing, and some mild behavior issues. That led to testing, and multiple diagnoses — what was clear to me was that his brain worked differently, and even though he was highly intelligent, he had some challenges. After a second heart surgery at age 9, he was frightened of the dark, and had nightmares — a real post traumatic stress response.

    When we sought therapy for him, he was quickly assessed and diagnosed with ADHD. That wasn’t what we were looking for — nevertheless, we tried medications (methylphenidate). At first, he said it made him feel less bored at school, but it came with horrible daily withdrawal effects. He would be an emotional wreck as the medication wore off. After his teachers told me they saw no difference on or off meds, he stopped taking them.

    My son is a daydreamer. He is highly emotionally sensitive, funny, and a budding actor. He is so much like me. Yet I know that he has some brain differences, based on his early experiences (perhaps some anoxia, and alot of morphine during his first days after birth). He is also very much like my brother as young teenager — who hid in his room and read science fiction novels. I have no doubt that my son has a rich interior life. It may be more interesting than what he learns in school.

    What works best for him? Lots of emotional support. A keyboard to overcome his challenges with handwriting. And teachers willing to give him credit for what he accomplishes.