I started off writing this blog, “coming to terms with a disabled son” or “the impact of having a disabled son” we’re titles that I thought were suitable. I was fresh out of a meeting about Disability living allowance and feeling very melancholy about how ‘disabled’ Reed is and the injustice that we haven’t received support, help or guidance about how to care for our highly disabled son. I know Reed has been poorly for quite some time now, but this the first time I had heard of him being described as disabled. Therefore he must be disabled, right?
So once I stopped being a prat and feeling sorry about myself I got to thinking…… “Who is really disabled?” Cause it sure isn’t Reed! Yeah he has seizures and he is going to be having surgery (when they get round to it) but check him out:
Epilepsy is a bastard and wipes him out for hours at a time, but he gets up, finds his dummy, Gigi, taggy and he is off. Often a bit like a fast forward video or a mime artist. Annabelle and Reed were playing chase the other day giggling, He explores (extensively) every environment that he enters, he has started to turn pages of books and loves sensory toys and the allotment. He will give anyone a cuddle and regularly steals biscuits from the other mummies at play group! He has no problem demonstrating his needs and everyone will hear about it! He has no cares in the world and as long as we make sure he can sleep when he fancies it, eat when and what he likes and can climb onto a box and stamp around then he is as happy as a pig in mud!
Disabled seems like such a negative word and negative and Reedy do not belong in the same sentence. Reeds condition has been catestrophic to us NOT Reed, So I got to thinking if a label of disabled need to be applied then it is to us not him.