learning to navigate the world, j-bear style

Tag: never fix what is not broken


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.

Rant Pants

Lately, I’ve felt very ranty on a lot of fronts. This is just one of the areas I’ve felt ranty on. If I remember more rants later, I’ll come back and add them to this post.  Why fill the whole blog with rants when I can consolidate them into one pile? Such efficiency.

Rant of the moment: “Curing” Autism

If a person born and raised in a foreign country with no concept of the culture, language and manner of where you lived were dropped on your doorstep for you to care for… Would you spend your time trying to “cure” them of the culture to which they were born?

No. You’d start finding ways to teach them how to function in the world which they now live, all the while learning to see the world through their eyes. At least, if you had a lick of compassion in you, that’s what you’d do.

So why are people out there trying to cure my son?! He’s not sick! This makes me angry beyond belief. A woman inferred that I was a terrible mother and torturing my son because I am not out there chasing down every snake oil salesman with a cheesy claim trying to “cure” my son. If my son has a clear medical problem I damned well will travel the ends of the earth trying to get him every bit of care and assistance he needs to if not cure the problem then to put it into remission enough that life can proceed in reasonable peace and comfort. Autism? It’s not on that list. Each day, I learn his culture as much as he learns mine. The next person who makes a move like this woman did is going to get an earful. I swear, the only thing that kept my tact in check was the board on which this occurred being otherwise a tremendous resource and the fact the direct thread was a mother searching for help and answers.


Posts upcoming:

  • Working on an update to our J to Dog fundraising including making our Thirty ONEderful way to Ohio.
  • Meet Ted E. Bear, J’s latest bestie
  • A post of Anne’s choosing because she made a lovely donation to our journey!



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