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How would it be?

My best BFF sent me a text this morning, the gist of which was did I ever wonder what our family dynamic would be without autism. I responded that I occasionally do, but it isn’t often I let myself go there because it can be defeating.

How would we be? How and who would he be without autism? I don’t know I can even imagine. He is who he is, and autism is part of that. It’s always been part of us, who we are as a family, even before he was diagnosed. I can’t really picture what our lives would look like if he weren’t autistic. I don’t know I can imagine who he would be, not autistic.

Would he be involved in a sport or some other activity? Would he be constantly outside, playing with his friends? Would he be a better student but with lower grades and test scores?

Autism is part of his make-up. Does it completely suck sometimes? Totally. It is often really hard? Uh, yep. Do I sometimes completely break down, wish it were any other way but this way? Yes, if I’m completely honest, I do. There are days I curse autism and the wreckage it brings. There are days autism wins in our household. When your nine year old tells you he wants to end his life so as to end the pain, you hate autism.

Do I ever ask, “What if?” Certainly. I wouldn’t be human if I didn’t. I don’t know any autism mom that hasn’t asked that question, maybe even begged to know why her child.

When I do try to picture him without autism, I don’t even see him the way he looks. He would have to look different, in my mind. Does that make sense?

I do worry about the effects of autism on my other two children. As difficult as it is for me as Little Man’s momma, they too deal with the fallout. I know it’s really hard for them sometimes. I also know they are much more compassionate of others with different needs, more patient and understanding because they deal with special needs first hand. Who would they be if Little Man weren’t autistic? What would their relationships be with their brother if he weren’t autistic?

This is why I don’t often think about it, ask what it would be. It leads to so many more questions I can’t answer. Would I take it away if I could? I’ve answered that question before, and I’ll say it again….I love my amazing child, and all the incredible things about  him that autism does bring, but I hate having to watch him try to navigate this world, a world which is not designed to accommodate people like him. I hate how much it hurts him. I hate watching him struggle. So, yes, profoundly yes, I would take it away if I could. But I can’t take it away, and so we journey onward. We are an autism family.

6 thoughts on “How would it be?

  1. We all ask the what if question. Especially when things are not easy, right? But then without all those challenges we would also miss out on things, or people.

  2. Such a difficult question when thinking about a unique individual – especially your own child. You answered the question with such grace, love and truth. So great you share all sides of autism, the bad, the good, and the in between. And what a great example of family ♥

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