Brace yourself - we’re in it for the long haul

And that is the simple truth - you have to realise that as a parent, carer or guardian of someone with special needs their need does NOT end once they have the diagnosis.  With these children, they grow to be adults and you have to be able to deal with the different things that can turn up and surprise you.

With both Kevin and I disabled, and knowing Johnathan was autistic did not change ANY of his needs.  And Kevin and I having disabilities made it even harder.  However, that did not change the fact that he is autistic and needs help.

For example, not only do I have to keep on top of the school issues, there are medical ones, his anxiety and in particular his separation anxiety, AND his autism and lack of friends.  

Both Kevin and I were delighted that finally we were blessed with a beautiful baby after four losses and I knew instinctively that he had a problem with the dark so left a light on for him.  Honestly, I could get exhausted trying to chase his feet around the change mat JUST to get socks on him - I generally resorted to babygrows because quite frankly doing each leg ONCE was more than enough for me!

But what gets to me is that a lot of medical professionals don’t count the child as autistic until it is diagnosed.  NOOOOOOOOO!  THAT is the point - parents need help BEFORE the diagnosis!  Drove me NUTS.  The local places I tried to get onto courses said that the child had to have the diagnosis first.

And once the child or adult is actually diagnosed you have to start considering the long haul.  It’s not as easy as it sounds but if you want to ask questions of someone who HAS got the diagnosis of one or more immediate family members - my suggestion would be to go at it!

You will discover that not all friends and family understand either what you have already gone through or will be going through as the years creep on.  Don’t get disheartened, but find others that DO know and DO understand.  And if I can be of any help, please do send me a message.