Yesterday was my birthday- and it was… compartmentalized. And very, very sad that I just won’t let myself dwell on or I will give in to sorrow. Can I vent? Can I just pour out my hurt and my despair and trust that you won’t judge- that you will listen?
We had an appointment with the pediatric neurologist for Ray yesterday- on my birthday- the neurologist who had recommended Daytrana for Ray’s ADHD. I walled away my anxiety about going- focusing on my teaching, my fun green outfit, talking to my mother. We were crabby about going, because the medication has had… mixed results.
There was a little girl- ok, boy
Who had a little curl
Right in the middle of her -his- forehead
And when she- he- was good, she- he- was very, very good
And when she- he- was bad, she- he- was horrid.
When the medication is working, during the middle of the day, Ray is great. He’s focused, charming, funny and writing poems. And when the medication is wearing off, he’s awful, awful, awful. Worse than not on medication. Awful. And it takes three hours for the medication to wear off. Awful. Irritable, right on the edge, and sometimes falling off of control, hurtful and sensitive. I mean- awful. And the medication makes his Tourette’s worse. Like very much worse. Like he’s spitting, which despite my best intentions, just totally grosses me out. When the medication is working, he’s in charge of his Tourette’s, and when it’s wearing off, it’s awful.
So, we told the doctor that while we kindof liked it, we really didn’t like what else it did. Was it worth it? We weren’t sure.
So, she put him on a medication, Clonipine, to help with his Tourettes- similar to the guanfacine we had originally wanted, but “with less dopiness”. Good? Is this what we want?
On the ride home, James and I talked- about how we feel boxed into the medication route, but that we didn’t know enough, we’re too involved as parents. We don’t feel we have good access to therapists here- we’re driving 2 hours one direction just to talk to this one neurologist. Are we grieving and don’t want to accept this? Is this a small problem that you throw a couple of pills at and all is well? Is this a major problem and we need to treat with lots of therapy? Are we making too big of a deal out of it? Should we do something now before it gets to be a big deal? So many questions- and no good answers.
And therein lies the rub- I’m a professional. I can help other children. But my own child… my own child- all of my professional knowledge and skill goes out the window. And Ray doesn’t see me as a professional to help him- he sees me as Mommy. Mommy to love and Mommy to fight. Mommy to argue with and Mommy to hug. Mommy who doesn’t know anything, but knows too much. Ahh- the dual nature of Mommies.
And so, on the long, long ride home from the doctor, he fell apart. He started saying horrible, mean things- things designed to hurt. ”How dare you! How could you drug me? What kind of mother gives her child something make him sleep?”
“Wait a second!” I defended myself/us/our decisions. ”This medication is for your Tourette’s. It makes you sleepy, so you have to take it at night. But if you don’t want it, I’m not going to make you take it. This is just to help you with your Tourette’s.”
And during that long, long car ride home, he wobbled back and forth between shrieking that we were too noisy, we were talking too much, the road was too bouncy, leave him alone- and lashing out at his sister who was teasing him, who was pestering him, who was in reality, sitting there quietly, playing with her own game, her own string, humming-lost in her own retreat. Autism as self-protection.
And as we waited at Sal’s Pizza- the best pizza in the world where our friend Vicki was meeting us, he stood sullen, asking over and over, “Why can’t we go home? Why do have to wait here? It’s going to be 30 minutes of waiting- we need to go home NOW!” Fixated on going home.
At Sal’s, we ordered pizza and breadsticks- trying to get some food into him- all of which he refused, adding hunger to his mix of misery. He “agreed” to take one bite of pizza, which did turn into 1/2 a piece, but all through out the presentation of the homemade apple pie Vicki brought me for my birthday dessert, and the funny book and oh-so-sweet card James got for me, he glowered and hmphed and growled and sighed. He did sit. He didn’t make a scene. He did play quietly with his pizza dough. His anger was absolutely directed at me, at us, at his resistance to our decisions- at his Tourettes and his anxiety and our defining it as a problem. I walled out my own anger, my own frustration, my own feeling of inadequacy in the hubbub of the pizza place. I ate three slices that might as well have been cardboard. I smiled. I chatted with Vicki. I made small talk with the waitress, who wished me “Happy Birthday”.
And when we got home after a long day, with birthday party preparations, he slammed the door to his room. James went in when the candles on the apple pie were lit (the 4 and the 3 from the children’s collection) and asked him to come out- “NO!” resounded throughout the house and the door slammed shut- again, for extra emphasis.
I know, I do truly know that he was “going to ground”- that it was his way of handling stress, of feeling “less than”, of coping. But as the (off-key) “Happy Birthday” was sung by my daughter, my husband and my good friend, I ached that my son was not/could not be there. I was not going to let him control the situation- I knew that he needed to know that the structure of “home” was something that he could depend on, I knew that he had to learn to calm himself down and that any drama would feed right into his rocky sense of insecurity. And so, I laughed and smiled and accepted the good wishes- and walled off the grief.
I bent down to blow the candles out, and in addition to the general “Health, Wealth, and Happiness” that I always ask for, I added “And please help Ray this year”. And I walled it away and laughed with Vicki and ate ice cream and pie and pretended all was well. Which, it was, in a way. Last birthday, I was by myself, teaching in KY while my family was here. The birthday before that, James was in CA. At least this birthday, we were all together, facing it together. There is strength in that.
Ray- finally- came out of his room at 10:00pm- an hour past his bedtime. He came out to ask for the new medication, to ask for help, to ask for a hug. I asked him if he was sure- if this is what he wanted to do and he said “Yes. I want it to go away”.
“It won’t go away,” I told him. “This is just to help your body regulate it”. And he chewed it up with an expectant look on his face.
I held him close- and the walls that had held up all day- his and mine both, finally cracked.