Tuesday 29 October 2013

The start of our blogging journey

So today I decided to start a blog properly - I keep thinking I need to do one and never get round to it but today I have.....

This is really to introduce us and what we are about.

Stardust is 9 and he has a diagnosis of Asperger's Syndrome, Sensory Integration Disorder and Dyslexia.  I have a bit of a battle in my brain about labels as I find them somewhat of an irrelevance.  I think looking at an individual and working out the way they process information is kind of the crux of things.  Labels can help in some ways, maybe to access support and with financial bits and bobs but not really for our philosophy.  Stardust is a gem, he is like those shiny stars you see but never reach.  I am lucky because I have reached him. This is because I have let him be himself.

He doesn't go to school, he is educated at home and he has a team of adults that work alongside him.  He has therapists a teacher and a teaching assistant. Stardust has only been to school for two years of his 'official school life' he didn't like it and he spent a lot of his time stressed out and very sad and withdrawn.  He was in a small independent school to start with and then moved to a 'special' school.  I think he would argue that there was nothing special about it.  Neither of these places really understood life from his perspective or if they did they didn't trust him to do the right thing.  He came home one day nearly two years ago and said he couldn't go to school anymore, he said that he had quite had enough of the carry on.  We listened to him and we decided he was right. 

The next few months were very hard.....

We spent a long time just being - just doing what we could manage to do.  Sometimes this was as simple as getting up and eating some breakfast, sometimes it was a little more, like playing a game together.  As time went by we could do a little bit more and we started doing stuff like popping to the shops for just one thing, sometimes this was so hard we didn't make it through the shop door.  We took all the time we needed.  Some days were much better than others.  The bad days outweighed the good to start with.  Stardust was very sad and still very stressed, so he could become aggressive and angry without warning, he could withdraw into himself and he could stop eating for days at a time.  He would sometimes hurt members of the public and attack himself or members of his family and this would be very hard for everyone involved.  The thing was it was going to be ok and Stardust knew this because he knew that we were doing the right thing.   He knew that even though we were making baby steps we were going to move mountains.

After about 7 months of leaving school Stardust started spending time with other adults, not just me - he loved it and we started to do bits of 'work' with him.  He loved that too.  He loved it so much he started asking to do more.  He was working so hard and doing so much we had to start preparing and planning loads of things.  This has continued.  He works hard, not just at 'educational work' but also in his therapy and just on a general day to day basis. 

I have so many stories to share about how we have got to be where we are today - the approaches that have been implemented, the communication that we use and how  Stardust has continued with his strength and courage to become the empathic, sensitive and caring person he is.  We still have times when the world is overwhelming and something triggers an intense response.  These are things we are working on all the time.

Follow our blog and come join us on the path we travel .... it's a tough rocky road but we are getting there.  If you are lucky you might reach Stardust too and see life through the eyes of a genius.