Why is it in the great scheme of things parents of children with additional needs get let down time and time again. Don’t the powers that be realise how difficult life is for us anyway without throwing a massive spanner in the works and make it even worse.
We always seem to play the carrot on a stick game. You know the one where you get promised the earth , you get all excited about this and last minute it gets snatched away again. For me my carrot was respite not overnight or anything like that just a few hours once a month to give me a break from looking after 3 children with autism and maybe one day being able to go out with my hubby without kids. Last time we did that was over 9 years ago. Anyway after years of fighting for respite we suddenly are accepted for respite for Zak who is 21 months and profoundly autistic. This was the answer to our prayers people were listening and taking note.
So after a few cancellations of visits on my part due to kids not being well or myself we finally arrange a visit we can both can make. Only to be told that this in fact would be my first and LAST visit as the service was being stopped due to cuts. Unbelievable why bother making the appointment in the first place only to tell me that. I feel so let down, I do wonder why I bother. It makes you feel so despondent about everything. Its making me question everything I do, wants the point. This is not the first time I have been let down by the System .
Now Zak his autism is becoming more prominent and its getting to the stage where we can’t go out to places because it upsets him too much which in turns makes him scream and head bang. Not a good combination. I can’t stop going out altogether but it is putting a limit on what we can and can’t do now. Its trying to find that happy medium where everyone would be happy but with 3 autistic children that is not as easy as it seems.
I would love to see how the powers that be cope with 3 screaming autistic children, wonder how quick they would ask for help ?
