Are we really ordinary?

Recently a video on the secret world of autism from finding coopers voice seems to have polarised the autism community. Some people found they could relate to it, yet some found they completely disagreed. For me it shows that Autism is a spectrum disorder. It varies from person to person. In recent years there has been a wave of awareness through tv shows like the good doctor and Atypical. This is great, the more awareness the better. It also romanticises the idea that kids with autism will grow to be quirky, loveable, successful people. Which yes some will.

Having three children on the spectrum I have experienced three different sides to the spectrum. One child who took years to be diagnosed because although he struggled to talk for years, was super smart and engaging with adults. Another who was diagnosed early but with ample hard work and therapies began to come out of his autism world and engage with us. Both were and still are a lot of work. Both still struggle to understand some concepts of life and both still struggle with sensory issue. Both of these boys are also able to talk and doing well academically and socially. They can take part in every day life activities although this has taken work and wasn’t always easy it was worth it.

Lastly I have my Patrick. The child who has the kind of autism people don’t want to know about. The kind where it is easy to lose hope for any kind of normal life. The kind where he self harms. The kind where he has violent outburst anywhere anytime. The kind where he smears his poo. The kind where he can not follow basic instructions. The kind where it has become hard to take him out in public because a screaming, headbanging, diaper wearing 7 year old is hard enough to wrangle with out the constant judgement, whispers and stares. We persevere and take him out because we want him and us to be able to live a normal life, but it gets harder and harder and you do lose hope. You do feel jealous and you do wish that you could take his autism away.

I remember the moment I lost hope. It sounds awful but it’s brutally honest. We were watching an animal show on television. Patrick was 5 at the time and this pig was doing a puzzle and I started crying as I thought to myself, Patrick can’t even do that. This pig is smarter than my child. What an awful thought and an awful thing to say but it’s a funny thing grief. You can’t control it.

I know that there is a spectrum of autism that people don’t want to hear about because it’s hard and it’s messy and it might not have a happy ending. I know because I’m living it. Unless you are too you will never understand.

1 thought on “Are we really ordinary?”

  1. Don’t lose hope! Ben is just now fully potty trained at 9.5 years old. He always surprises me with what he knows. Just because he may refuse to answer a question or do a task doesn’t mean he doesn’t know or is unable. Most of the time he just doesn’t want to.

    These high support kiddos can be physically and emotionally draining. I just try to keep in mind that the “behaviors” are the only way they know how to express how difficult they find living in a loud, bright, smelly, demanding world.

    One thing for sure, if someone hasn’t lived it, they will never *truely* understand. I understand. Hang in there💌💌

    Liked by 1 person

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