Monday, March 10, 2014

Tested Already

I had a very different post in mind for what I put up next.  The world intervened though, and my resolve to be less angry, to focus on the positive is being put to the test.  I thought about just following that old advice – "If you don't have anything nice to say just say nothing at all" but I believe this issue is one that comes up all too often to just ignore it.  I know I've dealt with it more than once and I believe all special needs parents do.  So I spent some time thinking about it, chewing it over, and trying – really stretching myself - to see it in the best possible light and not just go off.

You see, someone suggested to me that my baby, my son, my heart would be better off in an institution.  Even the very thought of that hurts me on so many levels.  Of course my first impulse was to lash out, to rage at them and at the world for ever thinking that was an option.  As always under the anger is pain.  “Do you think I am such a bad mother?  How can you believe I would give up on my son at the age of 7?  Why can’t you see the growth and joy and possibility in him that I see?”  And yet further under the hurt was my old companion fear.  “Maybe I am not doing what is best for him.  Maybe someone else could do better.  What if I am hurting him, holding him back from being who he could be?”

Stepping back from all of that to look for the love, the positive, the hope is very hard and very unnatural to me, at least it is right now.  Perhaps in time it will become second nature but hard or not I am trying to see it differently, trying to start putting my intentions to be positive, to live from a place of love and joy, into practice.  So where do I even begin?  I start by assuming good intentions on the part of the person making the suggestion.  I need to assume they want the same happy, connected, full life for my Little Man that I do and that they want the same for me, for all of our family and that this suggestion which pains and angers me so may be their best idea for how to help make that happen. 

It feels so gut wrenchingly wrong to me, probably because I believe passionately in inclusion as the best option for the neuro cognitively diverse.   (I believe this as an overall principle for ALL people but I also recognize that each individual is just that – individual.)  Perhaps the person suggesting this to me sees as I do that the world does not yet even come close to accepting, no less valuing, neuro cognitive diversity.  The efforts being made at inclusion for this group are by and large still efforts at forcing the individual who is different to conform as closely as they are able to the main stream vs efforts at adapting the environment to suit their needs.  This plays out along the range of scenarios from the small scale in Little Man’s class room everyday, to the much  larger stage nationally with the ARC campaign for “A Life Like Yours.”  Please don’t misunderstand me.  I appreciate the efforts the ARC is making to improve inclusiveness and rights for those that are “different”.   I even think that perhaps “a life like yours” is a necessary step in the evolution of thought to “we have lives that are different.  Both are beautiful and valuable. Together we bring more to the world because of those differences than if our lives were exactly the same.”   But "a life like yours" is still defining those who are “different” in terms of those who are “normal” with "normal" as the clearly stated goal.

Clearly this lack of acceptance and support is something that troubles me.  How very far short of the ideal we fall doesn't just keep me up at night worrying – sometimes it grips me in an iron fist of terror for Little Man’s future.   It is entirely possible that this suggestion was made out of a loving desire to protect Little Man, not a wish to move him “out of the way” or to “throw him away.”  I too want to keep him safe – of course I do.  I just believe I can do that best by keeping him close and fighting the battles needed to make the world more welcoming to him on his terms. 

A gentle explanation of my belief is much more likely to move us just a little bit closer to where I want to go.  Damn it.  I’d really rather kick some ass.  

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