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Living with children on the spectrum

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Hi, I’m Jess, I’m a married mother of three wonderful boys who all happen to be on varying levels of the autism spectrum.

My eldest is 11 and he has Aspergers and ADHD. My middle child is 10 and he is smack bang right in the middle of the spectrum. My youngest is 6 and he has severe autism and is completely non-verbal. Meaning he doesn’t speak, at all.

Patrick has always been my most complex child. He was born 11 weeks early and both of us nearly died due to complications in my pregnancy. He was in a neonatal intensive care unit for 6 months due to breathing difficulties.

Then at 2 years old, Patrick was diagnosed as having severe autism. Patrick had developed normally as a baby, he was able to wave, clap hands and babble Mum, Dad and Bub. Then one day this all stopped. It was like a light was switched off inside his brain.

After having all three of our boys diagnosed with autism, a traumatic birth, facing my own mortality, I was diagnosed with PTSD, anxiety, control issues and OCD tendencies.

Patrick is so hard to describe in a short story. He is funny, he has a very cheeky sense of humour. He is loving, and just two weeks ago started giving us our first kisses.

He also can not speak. He can not use sign language. He mainly uses what’s called hand on hand leading to tell us what he wants. He will grab my hand and place it on the item he wants or needs. He’s just gotten very good at this.

Being unable to speak means sometimes Patrick uses undesirable forms of communications such as banging his head, he has to be restrained when he does this and has split his head open before. He also bites himself, his hands are covered in red welts at times.

Patrick can be hard to engage with, he can become so focused on an activity, such as bouncing a ball, that interrupting this can cause a huge upset. He’s obsessed with outdoors and we must keep our house deadlocked and all windows shut. He’s pushed fly screens out to escape before. He loves eating but has no control so we have locks on our pantry and fridge.

If Patrick is in pain, he can not tell me. Last year he was cutting his back molars. Obviously, he had no way to say this and for two weeks he screamed in pain while the doctors and myself could find nothing wrong and nothing that helped him. This led to two weeks where Patrick screamed non-stop. I began to feel completely isolated and depressed and had suicidal thoughts.

You do feel judged and having anxiety means going out in public with my children leaves me constantly worried and upset, thinking people must think I’m a terrible parent. When in truth it shouldn’t matter what strangers think and my kids are actually well behaved.

It’s commonly said to me that I am amazing and its something that has never sat right. I feel it puts so much pressure on me to be this super star, Mum. When in fact I’m just doing my best like every other Mum out there.

I hope reading this gives you some insight into the struggles families with children on the spectrum can face,

Jess.

 

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