Go tell it on the mountain

When it comes to Autism, I have always prided myself on celebrating the good.

Revelling in every achievement, sharing each success whilst omitting details of the hard work  it takes from us both to sometimes just get through the day.

Hiding  the hard stuff and minimalizing the harsh reality that is all to often our world is intentional. 

No one wants to read about how fear for the future  keeps me awake at night or what a difficult day we have had due to a minor change in Evans routine.

A stupid and ill thought out comment recently from someone we know about how ‘lucky’ I was and how they perceived  autism affected my little boy made me realise that perhaps the occasional hint of honestly or a glimpse into our real world is sometimes called for.

I have mentioned smearing in passing in previous blogs without going into detail. This is a heart-breaking aspect of our world.

When Evan is not coping  he generally takes himself to bed or completely shuts down. He is very rarely emotional, he doesn’t express anger, sadness, excitement or happiness in the usual way.

When he does it can be really quite devastating to witness

Last week whilst out walking on the fells Evan appeared to simply come apart at the seams.

10 years of pain ,hurt, confusion ,anger and fear came tumbling out.

The straw that broke the camels back was minecraft related and to anyone else trivial.

Evan screamed.

Evan hit himself hard in the face and head over and over again.

I was unable to get close until his rage abated. When it did I held him and we both lay there on the fell holding on tight to each other sobbing for different reasons.

I do not believe autism makes Evan who he is, I believe it simply makes every single thing he does, every step he takes that bit harder.

I have lost count of the people that have said ” but you wouldn’t change him for the world, would you”

Would you choose for your child to move through life along a smooth straight path or to have to wade through waist high mud on rocky terrain?

Its a no brainer.

Would I change him? Would I take his autism away?

Yes! Absolutely! In a heartbeat.

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