Playing the waiting game (edit)

Although this blog post is not about Rosie, I just had to add this photo to it cos its just so cute!  Here she is modelling a hat that Granny made for me; but that Rosie likes to wear. Isn’t she just too cute???

Anyway, down to business. Yesterday was Barney’s review appointment with the psychiatrist at the Communications Clinic.  The appointment was supposed to be to check that all help had started and was in place. But it hasn’t.  I had a list of issues to discuss that I took with me.  This is what I took on my list….

1. Panic attacks daily about our trip to Turkey in June
2. Irrational fears and intrusive thoughts about death, dinosaurs, disasters etc
3. Seeing things at night in the shadows and believing they are real
4. Worry about wasting things – paper, food, toys
5. Worry about hurting peoples feelings in the past
6. Needing protection – wont go upstairs on in other rooms without me
7. Voice in his head tells him upsetting things that he doesn’t really feel
8. Can’t bear any type of music as they all make him think emotional thoughts

He took notes of what I was saying whilst Barney sat playing at a table of toys with his baby sister who was squealing with delight the entire time.  I got the feeling the doctor was taken aback by the fact that I knew so much about my own child and was insistent on getting help! He started ‘googling’ books that might help me learn about anxiety in children which kind of annoyed me because he wasn’t recommending books that he knew to be good, and I can google books myself any time. Plus I am building up an entire library of books about Aspergers!  I laughed when Barney piped up and said “if we buy any more books Mum we will have more than the library at school!”

Barney is supposed to be receiving one on one help from the Autism team, using cognitive behaviour techniques. The reason he isn’t getting this is because some of the staff have gone off on long term sick leave.  Dr M is going to write to them and ask that Barney is made a priority because of his anxiety.  However, in the mean time he wants to put him on a medicine called Risperdal.  This is a temporary measure until the one on one therapy starts to teach him how to cope with his anxiety. I am cross that my child requires medication because there aren’t the staff to help him.  Risperdal is used to treat adults with bipolar disorder, or schizophrenia; as well as to reduce anxiety problems in autistic children.  I am not happy about this, but see no other option at the moment. It is cruel to let him suffer.  One of the side effects of Risperdal is weight gain, so he was weighed and measured and this will be monitored.  The doctor said his anxiety was bordering on the obsessional, and I’m well aware that OCD is often seen in people on the autistic spectrum.

The doctor has also referred him to see an OT, to be assessed for sensory processing disorder. This is because of the problems he has with sounds.  Sensory problems in autistic children can make them extremely anxious, and he wants to see whether this might be the cause of his anxiety rather than a sort of obsession thought process. I’ve no idea how they test for this but I’m sure it will be very interesting.

So there we go. Still playing the waiting game.  Still learning about all this mostly by myself and hoping for the best.