There's Something About Alex

Living with Down Syndrome and autism

April 9, 2014

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Your Autism is exhausting my reality

Let’s get real folks. If you are a parent of a child with autism or Downs, no matter how much you love them, it’s exhausting!
The Downs in Alex is obvious for people to see, but the Autism isn’t and that’s the hard part of his disability. Well, the doctor likes to call it Autistic tendencies. Children that just have Autism usually look normal and others wonder why they are acting out and expect you to just fix it and make them mind.
With Alex it surfaces in his room. Everything has to be in a specific place and heaven help us if it’s moved. His routine for putting his things up in the morning and at night is religious. There is no getting around it or rushing it. You just have to plan ahead and allot for enough time. These are the little things that change in your world when you have a child with a disability. And while it may seem small, this is an everyday occurrence that if breached results in an all out melt down complete with rocking and arm waving with the dog watching with an ever confused look.
Lately however his scope of moving things to where he thinks they should belong has expanded around the house to other objects like my purse and car keys. It has become a game on my part of “If I were Alex, where would I put my purse today”? Kind of like our family’s version of Where’s Waldo?

This has made the process of getting ready to go even longer. But when I ask him where he put my keys and he turns his cute little face up to mine and smiles that cheesy grin and I know he has no clue what I’m saying, how can I get mad. It’s just the world we live in now. It’s Alex’s world.


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