Twinges.

I know, intellectually, that there is no cure for autism.  And yet, I hope.  Every day that my son wakes up, I hope that he will surprise me, look in my eyes and say, “Good morning mommy!”  Every morning that it does not happen, I feel the tiniest twinge of disappointment.  With that over, I take a deep breath, and our day begins.

I help him get dressed.  When I brush his teeth and comb his hair, I hope he will take over these tasks on his own.  Even more so, I hope he won’t fight me at every turn.  And yet, every morning is a struggle.  Some mornings more so than others.

We get in the car and ride to school.  I leave him with his tutor and hope for a good day.  Upon my return, I ask how he did.  He has moments of concentration, but mostly?  He is not focused and not responsive.  There is that feeling again – that twinge of disappointment.  It hits me harder when I hear there is no progress at school.

And in every corner of the internet, there are hucksters selling ways to improve my son’s life: his focus; his ability to meet the things neurotypical kids take for granted every single day.  Their normal conversation.  The swinging, cartwheeling, throwing and catching they are able to do without a thought or care.  Things my son cannot accomplish without intense concentration and effort.  There are promises that if I take this, or refrain from that, or use this device or that, my son will improve.  And none of it is real.  But I want to believe.  And so, before I turn away, my finger does not click the window closed right away.  But when I do, there it is again – that twinge of disappointment.

There are consults, recommendations, and evaluations. There are blood draws, EEGs, MRIs, medications and rechecks.  I give.  I take.  I stress.  I wait.  No change.  And, disappointment.

There are findings and fear.  So many fears that they physically wear me down at times.  I am so tired, literally and figuratively, of thinking of them in the middle of the night when they startle me awake.

There are threats to take away the only things that work.  The school setting.  The behavioral therapy.  Threats to transition him away from the things he is just getting used to that make the very strange world around him a little less scary.

There are fears of neglect in the hands of others.  Fears of future abuse, verbal or physical, based on news stories involving ASD children.   Stories that don’t surprise me, yet at the same time, always shock me. There are fears based on his inability to understand the danger of running through a parking lot, touching a hot stove, or putting his fingers in the door hinge.  Fears that he will slip and fall due to clumsiness and inability to know where his body is in space.  Fears that he may hurt himself in the bath or hit his head.

As I sit in the waiting room of his speech or occupational therapists, I wonder what he takes away from each session.  I wonder if any of it sticks.  Or if he grows and becomes stronger because of his own will, at his own rate, in his own mind and none of the speech or OT sessions make a difference.

He comes out.  He looks cock-eyed at the ceiling and runs back and forth across the waiting room as I get a report on his session.  Most of the time, I don’t hear half of what the therapist tells me because he is touching what he shouldn’t, climbing on a chair, playing with blinds or running and falling.  And I leave with that twinge of disappointment.

Almost everywhere I go and everything I do is for my son.  I spend hours waiting, in meetings, researching, consulting, shopping and living to make his life better.  And every day, at least 10 times a day, I feel the twinge.  I shrug it off.  I bury it inside and smile and laugh and play with him, oblivious on the outside.

But inside, it hurts.

It shows in the bags under my eyes.  In the shuffle in my walk.  In the lines on my face.

Love is like that.  I would walk across burning coals for this boy just to hear him say “I love you mommy.”  I hear it more often now, and sometimes, when I least expect it, I get eye contact too.  And therein lies my joy.

Sometimes, I will feel a tiny hand reach out for mine.  And when my tears begin to fall because of all the twinges I’ve bundled up inside, that little hand will bring me a tissue and say, “Mommy, be happy.”

And I will.

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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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20 Responses to Twinges.

  1. I don’t know if disappointment is the word I would use for myself, but I completely get it! I would say sadness for myself, along with fear. The sadness comes out of nowhere, and it’s frequent. Sometimes is blindsides me. I hate it.

  2. blogginglily says:

    A lot of this I could have written myself. One of the bennies of reading almost exclusively from blogs of parents of kiddos on the spectrum, I suppose. I don’t know why it surprised me to read it, but I was laughing at myself as I was reading along and thinking, “I KNOW, RIGHT???” despite the tone of the posting.

    I’m developing my own method of dealing with all of this, but honestly I get rattled out of it relatively easily at times.

    Hang in there.

  3. dixieredmond says:

    Oh, the tiredness. I understand!

  4. Flannery says:

    I think I decided long ago that I will never again know what it feels like to be “rested.” While I can’t speak for the efficacy of therapies, I can say for certain that YOU are making a difference every day. Hang in there, lady!

    • solodialogue says:

      Funny how we think we don’t need the rest after a while. Wasn’t there a study on cats who were kept awake and went crazy?

      Thanks for your sweet words, my friend. 🙂

  5. Know what you mean. Sometimes I feel so sad about it all that my body aches. It’s funny how it moves from grieving that your child has autism to worrying about what you should do to feeling an intense frustration and hopelessness that none of it seems to help.

    • solodialogue says:

      You really sum it up. But then there are those little bursts of sun through the clouds when they do something that just astounds us. That completes the cycle and we’re right back to hoping again…

  6. I call them paper cuts. They sure do smart at times. ((hugs))

  7. Kelly Hafer says:

    Paper Cuts – perfect for describing these twinges we all have. I have spent the last three years trying, in vain, to find the right medicine, therapist, toy, and combinations thereof to “fix” Ted. Every time we start something new, I am so over the moon hopeful – giddy, really. Then reality crashes me down. I wonder, in the back of my mind, how much longer I can hold out hope that something will make a difference. The bone crushing feelings of defeat when these things all inevitably fail are adding up and taking their toll on me. I am physically and emotionally exhausted. Ted’s autism has affected me physically (stress alopecia and high blood pressure) and emotionally (I’ve tried a couple antidepressants.). It wreaks havoc on friendships, personal lives, marriages and extended family. So, I guess in a way Paper Cuts describes all these twinges, but Nuclear Bomb describes the combined effects (or affects – never sure with that one!). At least for me. Hang in there, Karen. I guess we need to stock up on Band-Aids!

    • solodialogue says:

      I cannot tell you how much I feel exactly what you feel. The defeat is so hard when you get that hope built up and it hurts when that crash comes. The little chips and bangs add up and take their toll on us. (the stress alopecia – oh no! and no salt for you!!) I know what you mean by the nuclear bomb. We had one tonight. Little T decided to do a face plant into the door chasing a toy across tile in his socks – which generated a nasty cheek bruise accompanied by a two hour meltdown and then more reckless running and jumping and falling. So, I literally need band-aids and ice packs, and hooray (not). for all the questions and looks I will get tomorrow. 😦

  8. Kara says:

    It ain’t for the faint of heart, is it? The juggling of hope, reality, and setbacks is exhausting. You never really know which one will land on which day. I’m so glad that little hand gives you a tissue when you need it. Your post kinda sucker punched me though and I was hoping he could reach one over here. Hugs to you.

  9. eof737 says:

    This is so heart-wrenching to read Karen… Yet, what you say is so true… and all I find myself thinking is to say ‘Karen, don’t give up hope, continue to believe because that is what will make each day of growth and change; albeit subtle ones, a day of miracles…’ Sending you a virtual hug (((((Karen)))).

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