Introductions

Now I've finally managed to publish my first blog, after numerous failed attempts, I thought I would would introduce my family.  A is almost 20 and has a severe and complex learning disability (more of that later).  We spent the first 10 years of his life coming to terms with having a child with special needs and also looking after him.  Then we decided we didn't want an only child and had N who is almost 9 going on 14!  We then went a bit mad and had M who is almost 7 and R who turned 5 just before Christmas.  As you can imagine our house is never quiet.

When A was born I had quite a long labour and at one point his heart rate dropped but they put in a drip to raise it and let me carry on.  When he was born I just remember them putting him on me and taking him straight away to special care - just to keep an eye on his breathing.  This was the middle of the night and I had him back by 7am the next morning. 

At first everything seemed ok.  I didn't really know anyone with a baby and I thought they didn't really 'do' anything for the first year (having had 3 more how wrong was I??!).  At his 8 month check his health visitor said she was concerned that he wasn't sitting properly and should be moving around a bit more.  There began a round of never ending tests, hospital visits etc etc.  I am thankful that I had a good health visitor as she put lots of supports in place, got him into nursery early with extra support and ensured I had lots of information. 

Almost 20 years later and we still have no diagnosis.  Outwardly he looks no different (well almost!) to his brothers.  Inwardly it takes him ages to process information.  He can't follow directions - even asking him to get his shoes from his bedroom can leave him confused.  He has no concept of danger and although he knows why he shouldn't walk in the road he is unable to judge speeds to allow him to cross a road and cannot equate the fact he knows its dangerous with how to behave.   He knows that you spend money to buy things but has no concept of cost or how much to give the shopkeeper or how much change he should receive.  He enjoys social situations, but I worry about his safety as I feel now that he likes girls his behaviour is not always appropriate.   Because he looks 'normal' and he isn't as 'difficult' to look after as someone with multiple disabilities I sometimes feel a fraud.  Then I look at my friend who has a son the same age.  She can leave him to look after her younger children, he works, is learning to drive, has a girlfriend, goes out on a weekend and goes on holiday with friends.  All things that A is not able to do.  Maybe we all feel like this at times?

I worry about his future.  Big changes are happening as he reaches 20.  His money will change on his birthday as in the government's eyes this is when he becomes an adult.  Apparently he will need around £100 a week less to live on as an adult and will need to start paying a client contribution to his support.  I also worry about where he will live and how he will cope.  We have always discussed with him that he should have his own flat when he is older - but how old.  He is talking about it now but I still feel he is too young.  He still plays football outside with his younger brothers and their friends.  He wouldn't be able to do this if he lived somewhere else.  Also would his support ensure that he ate healthily, didn't drink too much coke, got out in the fresh air, went to bed at a decent time!  These decisions will need to be taken but for now we're just muddling along as usual.