Liz - Interview 2 ' Parents of children on the autism spectrum

Age at interview: 45

Brief Outline:

Liz's son, Jonas, aged 11, has been diagnosed with epilepsy, ADHD and Asperger syndrome and Raphe, the youngest son, has Downs Syndrome. Jonas attends the local mainstream primary school but Liz is worried about the move to secondary school.

Background:

Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality' White British.

Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty giving insulin to a child with diabetes.

 He is – well he has been on everything but he’s been Strattera, Ritalin. Also they use the Epilim for the epilepsy, they also use some of that for the ADHD because it can control. And now he is on Imipramine which is three tablets taken at night time and basically what the Imipramine does is it helps him concentrate a little bit better but it mainly helps him to sleep and if he doesn’t take them he is awake because that was the other thing, that the first six, seven years, he would be up at three, up at four, up at two in the morning, you know completely wide awake. So you know it was affecting all our sleep patterns.

Then having another baby was like the baby waking up every hour and a half plus the child waking up as well, plus my husband having to wake up at 5.30 to go to work. So it was very, very intensive in that respect. We were all very tired. So I felt that although it doesn’t control his behaviour as much as probably I would like to, I think the fact that he is sleeping has got to be better, so that is why with the psychiatrist we are trying to stay on that at the moment, because I think if he has a good night’s sleep then you are able to cope with things better during the day, but I think during the day, he could do with having another one, but it is just the fact that it affects, it has other side effects. It could affect his heart beat, so that is other thing, is that you know you give them medication on one hand, and it helps with certain things but it could aggravate others and one of the things that the medication can aggravate as well is the epilepsy, so you are forever having to juggle this decisions and medication is a very complex subject as well.

 

A lot of parents don’t want to medicate but if you don’t medicate when they get to be teenagers all the problems are a lot worse. So it is a very fine line, it is a very, very difficult one, and one that we feel guilty about as well. Until my psychiatrist said, “Would you feel guilty of giving insulin to a diabetic child?” This medication for the brain is for the chemical reaction in the brain so we mustn’t feel guilty. But you know you are always still borderline with that. So yes…