My mother did try to warn me that having a child wasn’t all sunshine and joy, that there was a massive amount of effort and patience needed.
Having waited until our early 30’s to start a family, neither of us entered into parenthood with anything other than complete understanding of how hard things would be at times.
Ante-natal classes did nothing to prepare us for having a disabled child; and in the early days he was the only child we knew who was disabled.
I should say that Sam is not a burden, in any way.
He is fabulous, wonderful, cheeky and perfectly capable of being an utter and complete toad when he wants to be. But in all honesty, I do believe that we have it quite easy with the little chap.
For starters, he isn’t independently mobile, other than having a phenomenal ability to roll and wiggle furiously to get where he wants to go; children who have seizures and who are walking as at a very high risk of serious injury through falls due to seizures.
Sam is kept safe and protected in his wheelchair, at the perfect height and position for us to get to him and administer rescue medication or oxygen as/when required.
His understanding and ability to interact and respond to us and others is improving all the time, he can now communicate with others who don’t know him as well once we’ve explained the basics of Makaton sign language to them, and let them see what Sam does with gestures and vocalisations.
He doesn’t have the major behavioural issues that many of my friends have to battle daily, nor does he have to face repeated major surgeries to try and mitigate the effects of organs that haven’t formed correctly, or which don’t work as they should.
And because his disabilities are mostly physical and therefore blindingly obvious, I don’t think we have to fight as hard for basic equipment and support as others do, where issues are less apparent to those who make these decisions.
It’s a disgrace.
Granted, Sam’s disabilities are obvious, but the extent of his abilities are frequently overlooked. People talk over him, ignoring him.
Sam’s usual response to this is to apply one of his orthotic boots to their shins, with considerable force (I’m kinda proud of him for that)!
But spare a thought for the parents and carers fighting a system that doesn’t recognise those disabilities that aren’t so obvious.