Severe, profound, impaired.
These are just some of the words used to describe children like my autistic, apraxic son Joshua.
I have to use some of these words too.
In order to secure the support he needs and deserves, I have to fill in endless forms focussing on all the negativity surrounding his disabilities. About how he eats paper and pens, has no sense of danger, and can’t advocate for himself.
I find this really difficult.
To me Joshua is joy.
Yes, he does require a high level of support because of his disabilities, but that doesn’t change who he is as a person.
His infectious smile. Cheeky sense of humour. And sensitive soul.
I’m his mum so I want to shout about how much I love him. When he nestles into me for a cuddle. Or when he says “I love you” on his Monty (speech-generating device), or says “Mummy” with his mouth.
I don’t want to spend my time focussing on the negatives using words like severe, profound, impaired. I want to focus on the positives.
It’s a shame the system designed to support children with disabilities forces us to focus on the negatives. Repeating the same information in endless forms every single year.
I will never define Joshua by his disabilities, he is so much more than that.
And I pray, with Monty by his side, and his newly-found spoken words, he is empowered to find his voice and achieve his dreams. 💙
