Monday, 11 June 2012

First Contact.

I haven't written about Boo's condition for a while, mainly because nothing significant has happened, until now.

The first positive thing to happen is that we had a phone call from CAMHS offering us an appointment for Boo within 24 hours of the phone call, as they had had some cancellations.
Bearing in mind that CAMHS have a mega waiting list, and we had already been waiting for a few months, we jumped at the chance to be seen sooner.
The main reason for being seen is that Boo seems to have problems dealing with his emotions. He can go from being happy, to angry and, then to quiet and withdrawn in a matter of minutes. A big problem is also the amount of aggression that comes from Boo, and is mainly directed towards CJ, Roo and Daddy D.

During the appointment Boo was allowed to sit and play and draw pictures, while the doctor asked me some questions about Boo, his genetic condition, and the symptoms it causes.
Not much is known about Boo's condition at present, so the doctors are trying to figure things out just as much as we are.
It has been decided that the best course of action will be to refer us to the Family Therapy team and to Parenting Support. The first thing that came to mind was "oh no, they just think we are bad parents." The doctor was very reassuring and made it clear that the reason for these referrals is to help us find a way to work better as a family and to learn techniques to control Boo's behaviour that work for him, and can also be used with the others when they misbehave so that Boo doesn't feel singled out.
They are also going to work with us to try and improve Boo's relationship with CJ, Roo and Daddy D, and to try and establish why he can be so aggressive towards them.
All in all it was a very positive appointment and I left feeling as though things are starting to go in the right direction.
We probably won't receive the appointments for a month or so, but at least we know that they are coming and that we are going to finally going to get some help at home, rather than just at school.

Boo at the seaside.

Another positive thing that has happened over the past few days is that, thanks to Unique (the rare chromosome disorder support group), I have received some lovely emails from other families who have young children with chromosome 1q21.1 duplication.

At the time of Boo's diagnosis we were told that he was the only one with his particular duplication, that they were aware of.
This may still be the case as, although it is the same chromosome duplication as these other children, some may be larger than others and may be on a slightly different part of that chromosome.
Being genetics, it can all get very confusing.
The main thing is having this contact with these families. To know that we are not alone, and to share information with each other about various symptoms that our children suffer from, and to see if we can be of any help to each other.

I'm still learning so much about Boo's condition and am so grateful to Unique for putting us all in contact with each other.

So far we have only made first introductions to each other, but I am really looking forward to getting to know everyone better, and who knows, maybe one day we can all meet up.