Day 28. Autism Awareness Month is nearly finished.
We are now medication free after a 2 and a half week weaning off process. It has certainly had it’s moments but it has been an interesting process to watch. James commenced on medication when he was 3 years of age and he has been on a variety of medications ever since. In the meantime he has received huge amounts of intervention. I’ve been eager to see how well he will manage unmedicated now that he’s a bit older. As expected, a few cracks are beginning to show. The two key concerns are hyperactivity and anxiety. The upsides are that he is his old, happy, flappy self and he’s clearly just feeling better and more energetic.
Sleep is an issue. Sleep is an issue for many children on the Autistic Spectrum. James is now experiencing huge amounts of anxiety in the process of going to sleep. This is new for him. He tells us, “I am worried about going to sleep”. He has come out to us two or three times every evening since he’s discontinued his previous medication. This is a concern. We have always found that if he doesn’t sleep well his Autistic behaviours increase. We will have to address this issue with his doctor very soon.
Hyperactivity. This is a really hard one because often high levels of anxiety present as hyperactive behaviour. James is pacing a lot, talking a lot, talking to himself a lot at a great rate of speech, giggling a bit too much, and it is difficult for him to sustain his attention to listen or reciprocate in conversation. What it look like – is that he’s constantly in fast forward mode! My gut instincts as a mum tell me that this is ADHD like behaviour and not simply anxiety … but sometimes I doubt myself.
Anxiety. Anxiety is one of James’ most significant issues. It’s extremely difficult for him to verbalise his thoughts and feelings, so it’s difficult to gauge sometimes exactly what level of stress he is enduring. He is much better now at telling us if he’s worried about something but he can’t articulate much more than that.
So where to from here? I’m concerned about sending him to school unmedicated tomorrow because he really was as ‘high as a kite’ this weekend. At home you can manage this but it’s much more testing in a classroom with 30 other children.
I’m in two minds about what to do next. On the one hand, I think we should give him something light initially to cover the anxiety. But then on the other hand, I think we should deal with the hyperactivity because that is the behaviour that is making it difficult for him to function at present. But even then, there’s no way to know if his anxiety drives this behaviour or if it’s purely ADHD. Very tricky!
I have accepted that no medication probably isn’t going to be a sustainable option for James in the long term and that’s perfectly OK. I wish however that the perfect medication could present itself and that we didn’t have to go through a process of finding the right one that might cause more distress to James. I wish that when we found this medication, that it would continue to work for the rest of James’ life but it doesn’t work that way. Sometimes medications cease to be effective for children. Many drugs have a ‘poop out’ factor – meaning that over time they cease being effective. So we are constantly reviewing and revising the medication in the search for a perfect fit. It is a very frustrating experience and a difficult one for James. It’s one of the many situations where I wish I could wave a magic wand!
I just love this child to pieces. Sure he’s difficult and challenging, and we’re constantly in a cycle of one step forwards, two steps back … but he is truly such a blessing. Both of the boys are! Tom is just a great deal more straight forward, bless his heart.
Since I gave birth to James my wants for my boys are very simple. I just want them to be happy and healthy – everything else follows. Sometimes keeping your child ‘happy’ is a harder task than you ever imagined. It’s scary, stressful and entirely heartbreaking to watch. This is why the decision to medicate is an easy one to me. I would not watch my child suffer needlessly and I would do whatever it took to help them to be happy and healthy. And so the journey continues … and I’d do it all over again in a heartbeat for these two little treasures of mine.
“You know, all that really matters is that the people you love are happy and healthy. Everything else is just sprinkles on the sundae.” (Paul Walker)