It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He needs full support to meet his every need. But something quite fundamental has changed for him.
For the first time his invisible disabilities have become visible.
He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.
He has always made strange noises and avoided eye contact. They have just made people look the other way and pretend they don’t notice him.
We have used disabled toilets now for some time. I think some people think I am someone very special because I pull a key out my pocket to open the locked doors.
We park in disabled parking spaces and display a ‘blue badge’. But still we get questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?
We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.
We have had to live with the fact our son did not ‘look’ disabled so according to most people that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.
But now that has all of a sudden changed. His invisible disability is now blatantly obvious. And the difference in the public attitude is incredible.
We have just been given a wheelchair for Isaac.
So suddenly people are smiling at his flapping, they find his noises endearing and cute, they even open the door to the disabled toilets to help me in. They no longer have issue with me parking in a disabled bay because they see a wheelchair coming out of the back of the car and a child lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself people are wanting to help and asking what they can do to assist instead or avoiding, talking about us behind our backs, or staring at us in disgust.
When we take him to appointments now people are going out of their way to help and support. Even medical professionals seem to take thing a little more seriously. People are listening, respecting and supporting where before these were all major challenges.
All we did was sit him in a chair with wheels. But it shifted things.
They told me having a wheelchair would be life changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable, and much safer. I was expecting it would be major for us.I just never realised how major it would be to everyone else.
When the invisible disability suddenly becomes visible we change how we behave. I viewed my son as disabled but now because of a simple wheelchair others see him as disabled too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.