Medicine. Good grief. It’s the topic I have yet to mention, even once, in the 14 months I have been writing about Ted and our journey with Aspergers.
For eight years we put prescription pharmaceuticals in our child’s body.
I said it.
And for eight years we wondered, did all those syrups, pills and patches do the least bit of good.
In Ted’s case, and since this is my blog, I can say it as I think it…
I don’t believe any of the medicines we gave Ted, really, truly were any help, and quite possibly, they may have been detrimental. Moreover, I do not believe those who prescribed his medication really, truly, although well-intentioned, had any idea what they were doing. Ted’s experience with the prescribing of medication was at best, guess-work.
That said, I can’t go back and do it differently. Instead, I accept what we did because, well it’s over now and we can’t change it, but at least I can share with you some of the experiences we had and our lessons learned.
It all began in 1995. What a year. I was pregnant with our second child and frantically trying to find a professional who could tell us what was happening with our 3 1/2-year-old son. Well, the baby came before the diagnosis. Meg, our daughter, turned five months old on the day, November 30, 1995, Ted was diagnosed with Aspergers.
He was four years old and it was a week later, in December, that our eight-year pharmaceutical journey began.
Kate was our nurse practitioner and my autism go-to person. She referred us to Louisa, who diagnosed Teddy, and she also got us to an occupational therapist, speech therapist and physical therapist. For a while I even had private sessions with her to help me cope with the stresses of raising Teddy.
It is not with a dose of over sentimentality that I say I loved Kate. I did. Nor it is an over exaggeration to say that she helped save my life. She did. She was always there for me. She listened, she understood. She had the perspective I needed to get through. And she knew all too well the challenge I was living, for she too lived it having a teen-age daughter with Prader-Willi Syndrome. So when she looked at me the way she would look at me, with total and complete understanding in her eyes, and when she nodded her head as she read my “Teddy Updates,” I knew the nod came from that place only mothers who have lived it know. And there was no better comfort than talking to Kate about what ever it was happening with Teddy and even when we moved a state away, every four months, Ted and Meg and I made the 10 hour round trip to see Kate for med checks. And even when we finally did move on, and finally found practitioners in our hometown, when it really mattered, when I really needed to know what was happening, it was Kate I trusted and to Kate I returned.
The first medication she prescribed for Teddy was Dexedrine, a drug often used for ADHD, which along with Aspergers, anxiety and OCD was part of the string of diagnoses longer than Ted was tall.
Dexedrine is a stimulant. I remembered a friend in high school who used it to lose weight. So I asked Kate about the logic behind giving a hyperactive child a stimulant. Seemed a fair question. The short answer was that in children with hyperactivity it can have the opposite effect, it can actually be calming for them. Seemed a fair answer.
Besides, I had heard the word calm.
That was an adjective I had never once associated with Teddy.
A calm Teddy.
Now that would be something to see.
So he began taking Dexedrine.
Fast forward seven weeks to one evening in mid January, 1996. We had put the kids to sleep, Meg in her crib and Teddy in his bed, in the room they shared in our two bedroom apartment. Neal and I then stayed up a few more hours, enjoying those sacred kid free hours you treasure when you have little ones. The house was quiet. I remember it was a quiet evening. I remember that because of what happened next.
When it was time for us to go to bed we went into the kids’ room to check on them. Teddy wasn’t in bed. We looked around the room and there he was, under Meg’s crib, faintly illuminated by the outside street light, with a pair of blunt-tipped scissors in his hand and his NY Yankees baseball cap on the floor in front of him and filled with his hair.
Unable to sleep, for two hours he had sat under the crib, quietly and calmly cutting off all his hair. Huge patches of hair, to his scalp had been cut off. And yes, blunt-tipped scissors can cut hair.
I was horrified.
If this is calm I thought, I didn’t want any part of it.
The next day I took Ted to my hair stylist who had to shave off all his remaining hair. His beautiful, curly hair was cut off to the scalp.
And then to Kate we went because I refused to give Ted one more Dexedrine. We switched meds and thus the cycle began. For the next eight years when something happened, if he was aggressive, or couldn’t sleep or unable to cope, we would either adjust the dosage of his current medicine or start all over with a new med.
Our story of medication trials started with our four-year old, bald and underweight from weeks of not eating and people asking, yes, they would kindly and gently ask if Ted had leukemia. “No,” I would answer, “he is autistic and took Dexedrine.”