Different Kinds of Invisible.

Winter has returned to California.  On Monday, the dark clouds, the wind, and the rain that inevitably follows came back.  It’s always strange to see the contrast of the dark, wintery sky against the blossoming of the cherry trees as I look for the first sign of spring’s return.  The calm before and between the storms.

Looking at the odd combination of harsh winter and rebirth of spring, I realize how winter is not ready to release its hold on us yet.  It is far too early.  The wind screeches wild and strong, echoing through the trees.  It seems to be winter’s voice, speaking to me loud and clear.  The rain pelts down and sideways, mixed with hail and occasionally, lightening strikes.

I often feel these early years, the time when all the therapies are consuming our every breath, are the winter of my understanding of autism’s grasp on my son.  I wonder daily how much progress he will make, how independent he will become as he grows older.  I worry about the emotional storms which rain down on us with such fury.  I wonder if autism will hold my son tighter, relax its grasp or maybe let go of him someday.

It’s a darkness that I cannot really describe to you if you do not walk in my shoes.  As parents of children with this invisible storm living in their children, we do everything we can to learn, to understand, to recognize the reasons for the storms in our children.  The affects of autism can be felt, its aftermath noted.  But, like the wind, autism cannot be seen.  It is invisible.

There is an ASD parent, who comes to mind, when I think of the invisibility of the diagnosis.  I met this parent through a local autism group.  She was the group’s librarian and was providing some cards for my son to use in in conjunction with applied behavioral analysis.  (The picture cards run about $200 and are provided as a service of the group to the therapists of ASD children without charge).

When I met this mom, she told me she has two sons with ASD, both considerably older than mine.  She shared that one of her sons “lost the diagnosis” when he was 11 years old.  She said that he was no longer considered autistic.  I immediately took this as a sign of hope.  Was it possible that the invisible condition disappeared?  That it was cured?

I saw her only for a few moments when I picked up those cards.  But I think of her often.  I wonder how she has coped.  I wonder how it came to be that one of her sons “lost the diagnosis”.  What does that mean?  Does it mean that someone found him “cured”?  Does it mean that he is so high functioning as to blend with  neurotypicals?  Or does it mean that he was simply forced through school and/or assessments and designated no longer autistic because it would cost to much to fund his continued care?

There is no cure of which I am aware for autism.  I do know that with early intensive behavioral therapy, children can progress to a point where they are so high functioning that they are considered indistinguishable from their peers.  They blend.  In a way, they become a different kind of invisible.

I want my son to attain this indistinguishability from his peers.  I want this so that he can avoid the bullying that comes from being “different”, so he can have the opportunities that all the other children have, so he can live independently and succeed.    I want his peers to think of him as fun, happy, someone with whom they want to cultivate a friendship.  Someone who is recognized for who he is, not how he is different.  This is a good kind of invisible.

But I do not want my son to be the other kind of invisible.  The kind of invisible that comes from isolation, from bullying and from intolerance.  The kind of invisible that lets a teacher ignore and push him through a system that does not cause him to learn.

I will not allow him to be ignored.  I will not allow him to be denied every available tool to enable him to succeed independently in his grown up life.  I will not let anyone force him to blend into a wall to save a buck.  This is a bad kind of invisible.

I wonder though, through these cold winter nights, how I will implement all these lofty poetic goals I have for my son when he is older.  How will I force him to be the good invisible and prevent the bad.  It will have to be by devoting time to him.  It’s as simple as that.  Time to listen, to learn, to share and to intervene.  I will force my way into parent-teacher meetings on a regular basis.  I will ask around.

Maybe I won’t be liked.  That’s okay.  I’m a mom.  I gave up on being liked by everyone quite a while ago.  If raising hell is the only way I can get my son what he needs, that is what will be done.  And I must never be invisible because my presence must be felt and heard and seen.  There will be no retreats no matter the season.

But I do love the spring.  The sun warms your face.  The song of birds, absent in the harshness of winter days, returns.  Spring is so full of freshness, birth, regeneration.  It’s all about the new, the delicate beginning of so much.

In the spring, the winds become a breeze. And soon after that, the breeze disappears.  And one day, when we are not looking at all, the nights are still and warm and full of stars.  And there is peace.

I hope one day, when I’m not looking, I glance back and see that, by my being visible all that time, my son has achieved that good kind of invisibility.  Then I will, truly know, spring has arrived.  And, I too will relax and fade into a nice breeze.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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4 Responses to Different Kinds of Invisible.

  1. Deb Mangum says:

    Karen, your willingness to wade in and examine that jumble of thoughts is humbling and awesome to me. I constantly feel the pressure of uncertainty, hope, fierceness, weariness, and joy that surround our journeys with our darlings on the spectrum.

    As you know, my son is thirteen and a half now. On Monday, a good friend told me to “lighten up” on Spencer because he seemed so very present and regular. She had met him for the first time, and was expecting a child manifesting every one of the quirks, symptoms, and traits that I had been venting about with her for a couple of years. I think that is part of the fear. We know all of the behaviors that can occur when things go sideways, so we are constantly prepared for all of them. Too much, too much to even allow us to drop our “ready” stance.

    When my dear friend looked at me so kindly and gently, I took a step back and just let them make a relationship without my protective vigilance. I had to trust both of them. I am slowly and reluctantly trying to allow Specner more space to succeed, to watch him flail, and then to recover without my hovering. I don’t know about “losing the diagnosis,” but I do know about a gradual lessening of the heavy stones in my backpack.

    You will find your way with your son, and each moment won’t be quite so fraught. You will even have strings of hours in which you can trust that it is going to be safe to breathe deeply and put your feet up. I promise.

    • solodialogue says:

      Thanks, Deb. I hope that I can stand back but that time seems so far away. I try to a little every day but then I swoop back in as the “catch-net” for anything bad that could possibly happen. I know I cannot do this forever and I do see him growing every day, but that’s the mama in me! I think that “losing the diagnosis” will stay with me for quite some time. I must find that mom and talk to her again…

  2. Its funny that you talk about “losing the diagnosis” today. We had a frustrating day with Kaia’s OT in which the OT told me that Kaia’s problems were mostly behavioral and she would likely “grow out of it.” We don’t even *have* a diagnosis yet.

    Like you say in your post, I think that there is hope for us parents *and* that our kids have a really great chance for life ahead — but that’s not going to come without a fight. Looking at the road ahead, it’s exhausting — just like waiting for that first *real* spring day after months and months of cold.

    • solodialogue says:

      Wow, those are some frustrating words. She probably meant to be encouraging but that is pretty insensitive and strange communication from an OT. I hope things get better with that OT or I’d ask for someone else…

      The road ahead might look exhausting but you know as well as I do that we will have many good stops along the way, full of laughter and warm cuddles while we wait for spring. Thanks for always being here Karla. It really means a lot to me!

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