“Don’t take me off this medication Mom. It’s helping me focus better.”
But I wondered as Michael said this. It was also stunting his appetite and having Type 1 Diabetes means eating full carbs at each meal or else having sugars that are too high or too low. I also noticed he was having a crash with this medication late day. His psychiatrist told us that we could supplement a half dose of another ADHD medication to help him carry through until bedtime. Often times when kids crash there are higher bouts of anxiety, (check) and aggression (check). Michael and us experienced both a couple of days ago. So we tried that. It worked. Then we remembered if we adjusted his insulin, chances are the sugars would get better which in turn will help, most of the time, with anger control. Surprise, surprise they did. This came after countless, and I mean countless other medication trials for ADHD that had terrible side effects, made Michael crazy and us crazy. I wondered if maybe I was wrong and we took him off too soon, but now that I see that this medication is going quite well, I realized I think we did the right decision. Michael’s feedback, of course, also played a huge part in keeping him on this medication as well as another one that is helping greatly.
What I just described is the typical day in Michael’s life and ours, but we are far from unique in our special needs community. Many exceptional children and their families are dealing with other co-morbid physical and mental health conditions, and trying to find the balance in teaching our kids to live their lives healthy, happy and as calmly as possible in order to have as many regular childhood experiences as they can. I have been advocating for Michael since I first saw signs of his delays and I will never stop, but it is exhausting work. Many of my friends and other fellow exceptional parents too experience trying to raise a child with all the normal children’s stuff on top of mental and physical challenges and have their moments when they want to run for the hills. Sometimes they burn out. It takes its toll. But of course, they always return stronger than ever. This child is yours and you will fight for them to the ends of the earth and beyond.
Also this eventually becomes the new normal for all of us. No, we are not super parents as others call us, but rather parents who love their child, sometimes get it right, sometimes get it wrong, but for better or worse, work on helping our children succeed to the best of their abilities. Any parent of any child would do this. Our children miraculously too adjust to their new normal.
Then, if we are lucky, and some of us are, we can slowly start teaching our children to advocate for themselves-self-advocacy. I am at that stage, as I slowly start trying to show Michael how to figure out what his body and brain need, how to balance all his health conditions, while still learning it myself. I show him, most of the time, how to do this calmly which is an art. It’s not always easy, but with his new feedback on what he says is helping and hindering him, the team we have , and of course, trusting my own parenting gut, we are slowly getting there.
Exceptional Parents, how do and your child juggle it all as individuals and a family? I’m sure you have your easy and hard days. Just remember, self-pity is never a good idea for you and your child. Take it one day, one moment at a time. Deal with the most challenging things first, then work the other things in slowly. And most important of all, know that your child has already adjusted to their new normal. Hopefully they will be able to advocate for themselves one day and handle it all, but teach them first and foremost how to enjoy being a child and building wonderful memories with family and friends around them. Until next time.