This little boy is my heart and soul. He knows how to make me so proud and he wants to make me proud, but there are times that he also does an equally good job of breaking my heart. I know that inside his little body, he doesn’t want to hurt me or hurt others, but as he has said, he can’t help it, his brain doesn’t always tell him to do the right things.
Due to his autism with mood swings, aggression, inability to slow himself down to make the right decisions, and intense anxiety that most people will never understand, he takes medicine. He takes a lot of medicine, in my opinion. He takes 4 pills in the morning, 3 for his autism and related symptoms, 1 for his reflux. He takes 2 pills around 2pm and then he takes 3 pills at night.
I babysat a little boy when I was in college that took a lot of medicine. In fact, he took one of the same medicines that D takes. I had students, as a young teacher, that I could not believe took those medicines. I was of the opinion that people should work harder to parent their children, create an environment that is more engaging and will keep the children busy, work with the child more intentionally.
I had all the answers.
When D was born, he was a perfect baby. Though looking back, I can see indicators even as a small infant. He was happy if his needs were met, even if he was not being held. To sleep, I could just hand him a cloth diaper and a pacifier. No need to be rocked. He gave his first spontaneous smile at 4.5 months, all of my other children were so much younger.
As he grew and we became more concerned, I was adamant against medication. We would teach him skills to keep him from exhibiting his signs of ADHD. We would work with his idiosyncrasies that came with the autism. We would ensure that he would not have to be medicated. Unfortunately, everything we did was not enough. It became more and more clear that he needed pharmacological help, in addition to psychological and therapeutic help.
At that point, I was adamant that my son would not take so much medication that he lost his personality. I was of the opinion that less is more, there should be one medication that would help all of the things he was dealing with. There is no reason a child needs to be on so many medications. Oh, except that each medicine deals with one set of symptoms and sometimes the chemical makeup of a child’s brain calls for a combination of medications to reach a point of stability.
Every day, as I dose out all of that medication, I hurt. My heart hurts that my son is not like his classmates. My heart hurts that he has to take so much medication just to maintain on the good days. My heart breaks that he is on so many big gun medicines and he still has days that make me consider the possibility of residential treatment or hospitalization again. It breaks my heart that my beautiful son knows he is different and that his heart hurts because he wants to be normal.
There are times that it is harder for me than others.
We have been building the K’nex roller coaster he bought with money for finishing his summer school program. There have been 624 pieces of roller coaster potential spread across the living room floor. I separated them in zipper bags and we have been working through approximately 35 pages of instructions.
We admittedly started kind of late the first night, but his bedtime medication makes him so garbeldeefluked that he could not concentrate. He was so tired he could not focus on the tiny pieces and make his fingers work to pick them up. It was so heartbreaking when he wanted desperately to put the coaster together, but couldn’t. It was one of those times that I thought, I wonder if we could take him off of all of his medication and have him remain stable…no, I know we couldn’t, but I would love it for him.
However, we continue to medicate him because that is what he needs. That is what is necessary to give him some semblance of normalcy in his life. It is what allows him to function in public so he can experience things like going out to eat and shopping with the family. That is what allows him to make himself get out of bed and go to school, which is difficult at best even with medication.
Medication is what gives him the best days he has, and honestly, I do not want to relive the worst of days with no or wrong doses of medicine.
You know what else? The medication is what lets us see his personality and enjoy the little boy that is deep down in his heart. It does not mask his personality or change who he is, it helps him be who he is.