Shortly after diagnosis day I found myself in the office of a Developmental Pediatrician running interference between the office furniture and my barely two-year old while answering questions about what EB could and mostly could not do. At the end of the appointment, I was thirsty and sweating from the unintentional workout of keeping my child safe and the office not-destroyed.
It was at this moment that the doctor actually looked at my son for the first time, scribbled a prescription for a medication and told me that it would help him “focus”.
He said to call if I needed anything else and exited the room.
I carried EB to the car, put him in his car seat, and put on “more “moonshadow”. Then I sat there in the car and quizzically studied this piece of paper.
Did my two-year old need medicine? Did I say something to suggest that was what I wanted? What does “focus” look like in a two-year old anyway?
Nonetheless on the way home I dutifully filled the prescription.
It’s still sitting in our medicine cabinet four years later. We never gave him any of the pills.
We saw another Developmental Pediatrician about two years later. He asked me what medication we wanted to try. I told him we didn’t really think we needed any and that we were just there because our child had a Developmental Disability and he was a Developmental Pediatrician and it just seemed natural for him to be followed.
He thought this was strange. I thought I didn’t like him much either.
Then I heard about another doctor and figured that we’d try once more. This spring we saw him for the first time. He spent several hours with us, interacting with EB and building a rapport. He didn’t ask us if we wanted medication. He didn’t seem to think we were weird for being there. He took us on and we were glad.
I’ve never been against medication. I certainly always expected it was in the cards for us. I’ve just always felt that when the time came that it would help improve the quality of EB’s life and not help make our lives “easier” we’d explore it.
A few weeks ago that time came. Our little boy slipped into a very dark place and it became increasingly clear that we had to try something pharmacological as well as therapy.
We have a doctor that knows our son and that we trust to help us make decisions. He listens. He is invested. He agreed that it was time.
When I picked up the prescription I cried. Something about taking medicine makes things so real.
It’s been ten days since we started the medication. These ten days have been some of the worst in our journey thus far. The biting, hitting, crying, and anxiety have continued. There have been glimpses of the boy that’s been missing for a while now, we have hope that it’s helping, or that it will.
We practiced by swallowing tic tacs. I put a chart on the fridge and offered a star for every time he took the medicine for the first week. I ordered this amazing little cup that a friend recommended and he has done well with it.
He earned a new video game.
I earned three new gray hairs.
It doesn’t feel like I thought it would to medicate my child. I don’t know what I thought I’d feel or if maybe I haven’t gotten there yet. I’m pretty fatigued from this latest round with Autism as it is, so maybe it doesn’t seem that enormous anymore. You know, when it’s the only option you have left.
I never thought we’d be here, it’s true. It’s scary to think about what this means now and for the future. But the future is always scary. If this pill makes my son’s life easier for even an hour of the day then I feel it’s worth it.
I’ll worry about everything else tomorrow.