I am a parent. So by nature of the job description I worry for the future of my children. I worry about wars and disasters and car crashes and bullying and wether or not my children will be messed up by my parenting. But mostly I worry if anyone will understand my son.
Because at six years and nine months old I still struggle to understand him myself.
My child is so unlike me. I try to imagine what life is like for him but in all honestly I just can’t.
I talk to him all the time. But he never talks back. I read to him every day but he never asks anything about the story or attempts to learn to read it himself. I make him food and although he eats it I have no idea if he is just tolerating it out of hunger or if he actually enjoys it. I sing nursery rhymes to him but I have no idea if he understands a word I am saying.
I know he loves lifts, hand dryers and mash potato. But I have no idea why.
For over 600 days all he would wear was the same jumper. Lots of people have had guesses as to why but only my son really knows. And he can’t tell us.
I took him to a sensory room recently where there was something called a musical wall. He touched that wall in the same place over and over again to hear the same song. I was so desperate to ask him what is was about that wall he so loved. I would have loved to hear his little voice join in as that wall sang ‘you are my sunshine’ for the hundredth time.
What was he feeling? Has he enjoyed the other places I have taken him this summer? Does he like school? What would he like for his birthday?
There is just so many unknowns.
I have read books. I have spoken to therapists who apparently have trained for years in his conditions. I have attended so many courses. I have even spoken to many adults who have the same conditions as my son. I have spent six years and nine months living with my son.
Why can’t he speak? Why does he flap? What is it exactly about lifts and hand dryers that he likes so much? Why is it so traumatic when I cut his nails, or wash his hair, or use a different plate for his dinner? Does he miss me when he isn’t with me?
I want to know. Because if I don’t know who else ever will?
So yes, I worry about the future of my non verbal, severely autistic son with neurofibromatosis and learning difficulties.
I worry that people will take advantage of him. Or hurt him. Or never allow him to be himself. I worry about whether he will ever learn to communicate or whether anyone else will be able to communicate with him.
There were moments today as he pulled my glasses off my face yet again and climbed all over me that I wondered how much longer I would be able to care for him full-time. And that scared me.
He is my son. I adore him. But I don’t always understand him.
And not for the first time I wonder…
What if no-one ever understands him?
If he was your baby would you not worry about that too?