Tell Us a Happy Story or Keep Quiet

They do happen.  The happy events happen from time to time. There are some positive outcomes sometimes, somewhere.  They might be temporary or they might be permanent.  But they are rare despite  the relative proliferation of such stories in all sorts of media. Any story about “recovery” from autism, is multiplied in TV programs or internet sites so often, that the false picture is formed.  Nobody wants to hear about lost fights, about daily humiliations of not being able to assure that your child is taught properly and not discriminated against in many unsettling ways.  If you don’t have a positive story to say, too bad.  It is your fault.  You are getting what you expected.  Yes, it is your fault.  You did not have positive perspective in the first place!

Maybe not. I did not concentrate on positive or negative. I concentrated on simple survival and finding a path that would not cave in under the load I was caring.  Later, I tried to be pragmatic while navigating between  Scylla of all kinds of false treatments and Charybdis of of neglectful attitudes. So no, I did not have any positive perspective.  The matter of fact I did not have any perspective.

If I had any moments of optimism they were put to the test hundred times a week, not by my child, but by those who were paid  to help him.  If the people WHOSE OBLIGATIONS, WHOSE PAID JOBS  are to prepare a child with disability for the future don’t help,  it is still the fault of the parent.  It is the parent who doesn’t know how to work with the teachers, administrators, or agencies.  It is the parent who needs a “calm” advocate, it is the parent who has to be trained how to talk to school.  Luckily, the schools, the state agencies, and non-profit organizations can make a list of better parents.  Parents  who are satisfied and ready to say so. Parents who can easily write about their positive experiences,

So, if you want to be heard, share your positive perspective and  swallow your bitterness mixed with a depressing hopelessness.

However,  the success stories with “positive perspective” don’t make me more cheerful. I am glad they happened somewhere, sometimes to someone, but they cannot be replicated, and that leaves the feeling of failure mixed with a  piercing loneliness and alienation.

It has to be told, that writing unhappy story  is much harder than reporting on successes.  You don’t share the fact that you go through bankruptcy proceeding the same way, you inform about your lottery jackpot.

We under-report the hurt, humiliation, and confusion as if they did not have a right to be witnessed. But they should be known so they could be addressed, maybe even helped.

That is why, I will start writing a very short but multiple stories about events that  frequently drained my optimism about my son’s future.  I will write about those thousand tiny things that kill an elephant before they drain the last ounce of optimism I still, surprisingly, have.

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  1. I can relate to what you wrote in this post. I can feel your mixed feelings about positive (and negative) stories. I have felt it when I started blogging, many years ago. I never wanted to write “horror stories”, and my goal was not to sugarcoat any of our daily struggles, but was not to make others feel like they could not relate: and the only way for them to relate was either they already knew what I was alluding to, or it had to inspire them, and disgust, or negative feelings are NOT inspiring.

    Autism has taught me to look at what we call reality in a different way: I try to see the world with a slightly different perspective always, knowing that I am missing something that I can perceive the way my son with autism is perceiving it. That in the process he can beat me up, break half of the valuables around him or hide his pain and misery in jumps up and down and endless grunting can be regarded as a terrible thing as well as a very interesting way to cope with chaos: there will always be two ways to look at things at least! I choose to look at them with hope and optimism and to walk, one day at a time, holding his hand on the journey until we reach some kind of promised land. If we do.


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