J-Bear and Me

learning to navigate the world, j-bear style

Tragedies

I get very almost irrationally upset when autism is referred to as a tragedy. I cannot decide if this makes me a jerk or what, and I am coming to the conclusion that there will always be people who assume I am indeed a jerk and likely also conclude I am a terrible parent but I will never, for anything, treat autism this way.

Losing someone before they’ve even begun to live, even had a chance to tell their story… That is a tragedy.

Senseless violence scarring bodies, hearts and minds… That is a tragedy.

Anger, ignorance and blind hatred destroying lives… That is a tragedy.

Autism is not on that list.

How do I raise a child to be whole and confident if I act as though a very important facet of who and what he is is a harrowing thing? My son was not lost in the day he was diagnosed, he and those who love him were handed the terms we needed to start learning the way he operates. This is going to sound like a strange way to describe it, but we were given a gift: We were given the way to get through to J. We were given a path to take, the name of what we needed to study and understand, so that we could learn to make an inclusive world for him both within the sphere of his influence and outside of that.

It is not a sunshine and rainbows path. It is not easy but then again, what life is? We struggle, we fail, we get back up again and we keep going. There are days that are so frustrating that I wonder if I am the absolute wrong person to be on this journey with him, I cannot deny that. I feel weak, and stupid, and lacking in every trait he absolutely needs the most of me. I have no trust in myself, no belief in myself, yet that is when he clings to my side the most. He believes, even when I don’t, just as I believe in him even when he doesn’t.

The most important thing is that we keep getting that opportunity to fall down flat on our faces and get right back up again. When we get those moments to rise anew, I am reminded, it’s just autism and it is going to be just fine. A life lived differently is still, in fact, a life being lived and if someone else wants to throw away that fact and consider life a tragedy, that has to lay at their door. It cannot be something that lays at mine.

J has a long, beautiful future ahead of him. It will not be without struggle and accommodation but one day he’ll be fully in charge of telling this tale. It’s my job to help him get to that point and to be there in the background nudging him onwards still once he does.

There are no tragedies here, only boundless hope and a deep eagerness for what the future might hold no matter what struggles lay between here and there.

1 Comment

  1. Another beautiful essay. The tragedy is not in a “different” life; it lies in the attitude of so many in society that unless a life meets certain criteria it is worth less that a life that does meet those criteria. The older I get the more I realize that no one has a “normal” life – what is considered “normal” is often a veneer painted over their unique journeys. Hopefully, someday society will evolve to the point where we no longer try to put a label on every life – and make a decision as tho whether it is a “successful” life or not. You are accomplishing your mission, not only by raising your child, but in sharing your wisdom with the rest of us.

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