It was our usual Saturday morning and ever since he had woken at 5:30am my non verbal son had communicated every way he knew how that he wanted to go on a train!
It is his favourite ever activity and we have a routine he adores involving a train ride, lift watching (his other major passion) and eating (another serious passion!).
We have it all timed so we arrive just before lunch and eat at a certain place before watching more lifts and heading home.
The only bit I ever worry about is not the challenges of two children with autism, or even the huge gaps between the train and the platforms; no the single most thing I worry about is the general public!
Today sadly showed me why.
As we boarded the train to come home having had a lovely time watching lifts together and enjoying lunch, my son decided he wanted to sit on the opposite side of the train to us.
This is common as he needs space to regulate and as his sight is deteriorating and he has no sight at all in one eye he naturally wants to sit at the only side he can see out of the window.
As he sat down on his own within plain sight of myself I noticed a much older lady smile at him and ask him if he was enjoying his Easter holidays. Gulp.
What do I say when he won't look at people, can't speak at all and has no understanding of what he was even asked?
I simply said, 'he does not understand you sorry. He can't speak at all and has some difficulties. Thanks for talking to him though.'
Maybe it was what I said, or the fact I seems a little worried or the fact my son was now making his usual noises and flapping; whatever it was I was still not expecting what she said next!
"You really need to pray to Saint Jude you know! He is the patron saint of lost causes!"
I smiled but remained silent. Inside I wanted to scream and cry all at once.
Lost causes. Lost causes. Lost causes...
Is that really how some people see my child? Maybe that is why speech therapy have ceased working with him?
Maybe that is why CAMHS discharged him despite him struggling with anxiety, control struggles and self harm?
Perhaps that's why all his teachers have left after teaching him?
He is 8 and still in nappies. He is 8 and non verbal. He is 8 and has the comprehension of a 14 month old. He is 8 and has the sense of community of a 3 month old.
His diagnosis is comprehensive and life long. He has no sense of danger and little awareness. He can not dress himself or brush his own teeth.
He has potential. He has life. He has vibrancy and capacity to grow and learn. He has personality and character.
I will never give up on my child. He may have some difficulties but sadly the general public often have much more difficulties than he does.
While he has breath in his body he has life and potential and a future. I only wish more could see that!
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