Being a “professional parent” for eight teenagers doesn’t mean that I always know what is best for my own three children. That is especially true for my son Micah, my son with special needs due to a syndrome called Kabuki Syndrome.
Everything about our parenting with him seems experimental. We are forced to constantly adapt to changes in his moods, energy levels, physical abilities, and academic abilities as he grows older. It’s hard to know what is right, what is wrong sometimes. How do we move forward?
Medication changes feel even more experimental, verging on a sense of haphazard sometimes, fueled by a sense of desperate hopefulness that we can help him with his emotional regulation, his anxiety.
This weekend Micah had a meltdown, a temper-tantrum, when he was outside at a nearby courtyard playground and he refused to listen or come home. He threw himself around, argued loudly, ran into the street, bit Sarah, and even opened the sliding door to the van and ran out of it as Sarah was starting to drive home.
He recently had a med lowered, but his oppositional behaviors spiked almost immediately after having the med lowered. The downside of having the med not lowered is that he can get sleepy at school sometimes.
We don’t want to sedate him into some sort of stupor, but at the same time we want him to be able to manage his own emotions, his own temper, to be able to deal with frustrations and not go into a kind of fight or flight mode.
When he gets locked into this mode, I just imagine his brain releasing a bunch of hormones that kind of lock his amygdala into this state. He seems sort of stuck in it. Sometimes he can even rationally see that he is being unreasonable, and later he regrets it. But when he is like this he has very risky and sometimes very dangerous behaviors.
After his melt down with Sarah, I had a sit down and discussion with him in my room. I sat him on my bed and tried to figure out with him why he did what he did, why he was acting the way he was acting. He told me that he should “run away and become an orphan.” He told me that he hates that he is “stupid” and that he “always does stupid things.”
Other things he’s said to me:
“Why am I like this? I don’t want to be like this. I want to be normal. I just want to be normal, not stupid!”
“I’m stupid. All I do is stupid things. I don’t want to do stupid things. I should run away so I can just be Micah and do stupid Micah things.
“I don’t want to live here. I should be an orphan.”
You might imagine how that breaks my heart to hear him say these things.
I’m not sure exactly where he’s getting this concept of being stupid because that is not a word we really even allow to be said in our home. It’s not something that his brother has said to him that I know of. It’s something that maybe he picked up from school or he is simply just telling himself due to being aware of being academically behind students his age.
As his dad, I just gave him a hug. I’m torn by wanting to scold him for some of his risky and dangerous behaviors, but also wanting to affirm him that he belongs with us and is loved and he is not stupid. But that sometimes he feels out of control and does things that he doesn’t want to do, or regrets doing.
“I’m your dad, and I love you. You are not stupid. I want you to be safe and I need you to understand that you are safe here with us. Please don’t ever run away. Please be careful and listen to mom and dad when we are giving you instructions because we love you and want to keep you safe.”
With his head buried under a blanket, he simply said, “Ok.”