Friday, July 19, 2013

Summer School and Medication

My son had a long stretch of generally very good behavior at school. His major incidents were way down, and he had achieved a Safe Month in April and made it to Level 4 in May. It has been months since he’s come home with a chewed-to-shreds shirt.

This summer, he transitioned to a new teacher, something that we thought would be a big adjustment for him. After all, any type of change is difficult for most kids with autism, and Kai had had the same wonderful teacher for the past two years, in second and third grade. From what we could tell, Ms. Z had been extremely supportive of Kai. How would he react to a new teacher, who was also new to the school?

Summer school itself is a bit of an adjustment, as the schedule changes from the regular school year, and there is less structure. Half of the day is devoted to academics, while the other half is full of camp-like recreational activities.

In the summer following his kindergarten and first grade years, Kai seemed to have trouble with the looser framework of summer school. But he did much better last summer, and even with a new teacher this summer, he has been doing quite well.

His scores on his daily point sheet were consistently high, he had no major incidents, and he was in a great mood every day.

A few weeks ago, we consulted with Kai’s doctor about cutting back on risperidone, the medication that he has been taking on a small dose for over a year.

Risperidone is sometimes prescribed for kids with autism to reduce irritability and anger. It is said to work by calming down activity in the brain by blocking the neurotransmitters serotonin and dopamine. The thought is that too much of those neurotransmitters may lead to tantrums, fighting, and trying to hurt themselves.

We wondered if Kai would still be able to keep his anger under control without the drugs. Perhaps he had matured and learned to control his feelings well enough to do without the drug, which has a side effect of weight gain.

We started out by cutting the dosage in half. After one week, when there did not appear to be any negative consequences, the doctor agreed that we could stop the medication completely.

After a week off of the drug, Kai had his first relatively bad day at school. Was it a coincidence, or a direct result of stopping the medication?

This week Kai also started having a harder time sleeping through the night. He has always had trouble sleeping, but in the past year he has been better able to go back to sleep on his own. But in the past week, he has resumed calling for me in the middle of the night, complaining that he cannot sleep.

Yesterday, on his last full day of summer school, he had his first major incident of the summer. The school recently introduced the practice of saying The Pledge of Allegiance each morning. For a reason we don’t understand, Kai did not want to say the Pledge. He was asked to take a timeout, and during that time he hit and pinched one of the classroom staff.

Today, when the school went on a field trip to the beach, he had difficulty following directions to quit throwing water balloons at people when the balloon toss game had ended. He was given a time out, and responded by throwing dirt and grass at the staff in anger.

And so, it looks like maybe we should put Kai back on the medication.

We don’t like its side effects. But if was helping him control his anger as appears to be the case, then that is something that we will just have to deal with. We need to get back the boy who didn't have a major incident all summer.


  1. I am sorry to hear about the incidents. Hopefully, sometime in the future will be a time to try weaning him off of the medication. You know Kai best. I am always rooting for your family.

    1. Thanks, Shiroi. Hopefully, Kai will get back on track after he has been on the meds again, and then sometime in the future we can try weaning him off again.

  2. Sometimes you just don't know if they need a medication until you take them off of it and find out! Maybe he only needs the half dose? My boys have been on risperidone since they were 4 years old. Back then it was in liquid form and they only got one drop a night! Hope the good behavior comes back! He's been doing so well! The half dose might, too, be less of a weight gain for Kai.

    I know of another autistic boys that chews his shirts! Funny how it can be a common thing.

    1. Yes, oftentimes we are not sure if a medication is working or not. I guess the positive in this is that we apparently found out that the risperidone was working. We will start with the half dose, and see if that is enough to get Kai back on track.

  3. Janey also takes risperidone, and I feel like it saved all our lives when she first started taking it. Lately she has been doing well, and we've had thoughts of lowering her dose or taking her off it, for fear of the side effects (she really hasn't had any we can see, but the the potential ones are scary) It's very helpful to read this in thinking about our decision.

    1. Suzanne, it's a tough call to make. When your child is doing well, you don't want to change anything as you want to keep the good period going. But we really don't want to be on risperidone for a long time, so we thought we would try taking him off. It didn't work out this time, but hopefully there will still be a time when we can wean him off.


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