I have been so proud of Barney lately. Last week he celebrated his 7th birthday The changes he has made in the last year have been phenomenal. It was just a year ago that he was practically housebound through fear and anxiety. A lot of this was due to sensory issues that we weren't aware of at the time. He has spent 9 months now taking a medication that the consultant said he would only give him for 3 months. In this time he has had a lot of therapy in the form of schedules, timers, breathing exercises, visualizations etc, from the Autism team. And he has also been attending weekly Occupational Therapy sessions. (see the photo below)
Well, this week has had his review appointment with the consultant; the same person who diagnosed him. He said that he could see a remarkable change just by talking to Barney. He really has been like a different boy, and it has been wonderful to watch him enjoying his childhood, instead of being crippled by fears and worries.
But because he is doing so well Dr M decided that it is time to take him off of his medication. Barney immediately panicked and curled up in a ball on his chair begging the doctor not to stop the medicine. I expressed my concerns that I was worried he may psychologically feel that he can't cope, and perhaps a placebo might be a good idea. He decided to wean him off the meds over 3 weeks. So he is now taking them every other day. The idea is that on the days he is not having medicine he will see that he is coping and gain confidence that he can cope without.
He is on day 4 of this alternating meds schedule and the changes are already causing concern. Thankfully, the anxiety hasn't returned yet, and for this I am truly grateful. But he is once again, very suddenly, a typical 'Aspie'. I hadn't realised that the medication had not only reduced his anxiety, but totally altered his personality. Whilt I love the aspie aspects of this personality, I am also very aware that they make daily life more of a challenge for him; both at home and at school. The staff at school have already called me in to discuss the difference. Then yesterday he went to what was supposed to be his last OT visit. But after seeing the change in him she decided she couldn't end his therapy yet. He was, to quote her words "a different child". He wouldn't listen, wouldn't take instruction, cried and sulked when he couldn't do something, answered me back rudely, had huffs and tantrums, dangerously hit at the equipment and wouldn't co-operate. He was also totally hyper, seeking movement and deep pressure stimulation and generally manic. The OT stood with her mouth open for most of the session and said she had not expected such a dramatic change. I felt like crying when I came out. What happened to the polite, well behaved child that I had been taking to OT for months?
Anyway, things could be a hell of a lot worse, and if they continue like this then we will all cope just fine. But I have a deep fear that things will go right back to the way they were, and I really don't want that for him, or for the rest of the family. Fingers crossed.