The Regulator

“Did you refill your pill organizer for next week?” I ask Nigel as he walks into the kitchen.

“Not yet.” He walks over to the cupboard where we keep his bottles of medication, takes a bottle out, and proceeds to shake it vigorously as he walks to the kitchen table. It sounds like he’s got a maraca in his hand. Then he puts the bottle down, opens it, and begins filling his weekly pill container.

Two weeks ago, we saw his psychiatrist and discussed weaning him off of one of his medications – Zoloft. He had been taking it for almost two years, and had been at the same dosage for over a year, in spite of the fact that he’d grown a lot in that time. The OCD behavior he’d exhibited that made me realize he needed the medication (systematically pulling his hair out and eating it) is no longer present at all, and hasn’t been for a while.  The doctor concurred, and told us to halve the remainder of what Zoloft we had, and Nigel would be completely off of it in two weeks. The Risperidone, which he has been on for almost a year, he will continue to take for several more months at least. I figured that it would take him about two years to learn to regulate his behavior himself, which is why he started taking it.

Before leaving, we stopped by the front desk to schedule our next appointment two months out, as instructed by the doctor. The scheduler, a friendly but disheveled-looking woman with erratic movements (tics, possibly?), gave a little “Yay!” and started looking through her agenda. I recalled her reaction six months previously, when the doctor told us to schedule the next appointment in three months, how the scheduler actually whooted and did a little happy dance. I politely smiled in response, not sure what the celebration was about. Yay, we don’t have to come back for three whole months to a place that Nigel despises? Yay, you don’t have to see us again for three whole months? Or Yay, we’ve reached a positive point with the meds and they don’t need to be tinkered with for a while? I’m guessing it was the latter. But still. My day of celebration will come when he no longer needs the medication at all.

And with the successful departure of Zoloft, we are getting there. The fact is that, even at small doses, the Risperidone is something that needs to be watched. Nigel was required to have blood drawn last week for several routine tests and had to see a specialist to make sure the drug is not affecting his joints, among other things. The fact that he developed a trigger finger on one hand and a sore joint in one foot, both in the past year, disturbs me. I don’t like this stuff. I don’t like pumping his growing body with chemicals.

I’m certainly not against medication; it is integral to the functioning of those who need it. I have seen how much it helps, and I know that some children truly need it for their conditions. Nigel needed it to stop pulling out his hair and eating it. Then he needed it to help with his behavior regulation, since his autism prevented him from regulating it on his own. But he’s learning how. And, as he says, he learns by doing. Each time he demonstrates appropriate management of his behavior, he learns from it. Yes, for now it’s facilitated by his medication. But as he learns (and as his dosage is not increased with his growth), his behavior regulation is going to become more and more his own doing, not that of the medication.

“How much longer do I have to keep taking this?” Nigel asks after he swallows his morning dose. He knew that he needed it a year ago and requested it, but he believes that it makes his scalp itch and wants to stop taking it. “Because even on days when I forget to take it, I’m still calm at school.”

“Well, that could be because it’s still in your system. But I also think it’s because you’re learning to regulate your behavior yourself.”

“Yeah. I am. I don’t get angry like I used to.”

I tell him that we’ll talk to his doctor about it at our appointment in January and see what she thinks. And maybe I’ll have my day of celebration sooner than I’d originally thought.

17 thoughts on “The Regulator

  1. Maddy

    I couldn’t ever envisage medication for mine, mainly because they were so small and there were no long term studies…..Anyway, with all the self-calming / regulating / biofeedback techniques we had in place I was sure it was just a question of time until they ‘learned.’

    Of course once we were knee deep in OCD / the angries and other self mutiliatory behaviour, I had a change of heart. I’m still sure that as they grow older they will learn some of these techniques / be better able to access them, but in the meantime…..

    I heard an interesting article on the radio not so long back about young people on anti depressants [now in their thirties] and their opinions were very enlightening.

  2. Cinda

    As you know my daughter is 23 and speaks about both her need for meds and her goal of eventually not taking meds to our audiences. She always adds, “I had to be stable enough to learn and use all the skills that I was taught as well as make all the healthy life style choices.” I think it is a dull, heavy ball of worry in every mom’s soul when their child is taking meds…..I guess the goal is not only for them to eventually get off the meds but be able to know when to get back on, and continue taking them as needed and managing their own health as they move into adulthood. Linea now calls or sees her doc when she needs a “tune-up”. Thank you for your post! Nigel is an awesome kid!!!

  3. Kim

    His comments always amaze me! It’s wonderful that he’s learning how to regulate and that he understands what the medication is for and how it has helped him.

  4. corrie

    It took six years to talk us into mediation for Jonathan. He’s on Vyvanse and Zoloft. I’m hoping he’ll learn to regulate and be able to come off too. The Zoloft alone made a huge difference. It was like he had no reserve when things hit him. Now he’s much more likely to go with it.

  5. rhemashope

    How wonderful that Nigel “learns by doing” – it’s clear he is learning to know and understand himself and his body.

    Whenever the time comes, we’ll be celebrating with you.

  6. jess

    He is incredible. And I am with you on the use of the meds – putting out the fires long enough to teach our children how to man their own fire trucks. and it sounds like he does it brilliantly!

  7. Tera

    i have a love/hate relationship with pills. i *wish* kaed didn’t need them, but he does…i’ve gotten used to the idea over the years. i liked reading that nigel takes care of his own medication. i haven’t thought to let kaeden take on this responsibility yet. maybe it’s time for consideration.

  8. dynamite girl

    Thanks for this post. I hope for Nigel the day he does not need meds comes sooner than later. I am with Tera on the love-hate relationship with meds for my kids. The side affects are devastating to watch, but without my children can not cope.

  9. cathy

    that’s so exciting! I agree–meds definitely serve a purpose–so great he’s becoming more self-aware and may not need them

  10. nicki

    Thats interesting that the scheduler had such happy reactions when she scheduled your appointments! Maybe she has some trouble regulating herself as well???!!

  11. Brenda

    I’m giving a big “Whoot!” right now for you! His self-awareness is incredible! Meds are a big struggle for all of us parents and I’m glad you had the courage to talk about it. xo

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