July 25, 2016

Whatever We Can

Posted in My Take on Autism tagged , , , at 10:13 am by autismmommytherapist

Zach Arrives and Justin 4 089

I hold you as you sob, my arms wrapped tightly around your torso, as behind me your father holds your hands so you won’t pinch or scratch me in your grief. Tears are welling up in my eyes with you, because I know what you so desperately want to do, and I can’t give in. You see, your OCD or your autism (I can’t tell you how much I don’t care which one it is anymore) is telling you to throw your brother’s play station controllers behind our speakers which will undoubtedly break them, which will cause holy hell to be unleashed in our home.

Your brother has a deep attachment to his play station.

You cry uncontrollably, your grief palpable, and I know that for you, in this moment, it just feels so wrong for them to be sitting out in plain sight. I know we could hide them for a while, but honestly you find everything, and your father and I feel it’s best if we stand firm, and just say no.

Your father holds your hands with one of his and manages to find the remote with the other and put one of your favorite Baby Einstein’s on tv, and I feel the tension slip from your body. With a last hiccup I see your radiant smile break through your tears, your eyes meeting mine as you share your happiness at witnessing this old fave, controllers (for the moment) forgotten.

It will take me longer to forget.

We’re trying Justin, please know that. Your OCD and/or the more perseverative aspects of your autism have been ramped up considerably for the past year-and-a-half, and neither the behavioral plans nor the medications we’ve tried have really helped. We’re giving you something new now that will take weeks before we know if we’ve hit the jackpot or not (here’s hoping), because your obsession with arranging things not only keeps you from more productive pursuits, but wreaks havoc in our house and, worst of all, frustrates you to tears.

Sometimes Mommy joins you there.

Part of the problem, son, is that Mommy is a “future girl”, and when I look ahead at yours and know one day you will no longer live with us I anticipate that this behavior will not be looked upon with delight in your group home when you’re fifty. The people who will one day care for you will not be paid enough to have their entire closets rearranged, nor will they want to take twenty minutes to get you out of the house as you try desperately to angle a shoe just so.

I just want to help you.

The truth is when you’re in these “spells” as I’ve dubbed them I look in your eyes and the boy I know and love is no longer there, the bleak stare of obsession replacing the kindness and calm you radiate at all other times. This is so different from the stimming you do on the computer or on your DVD player, an activity which gives you joy and I believe if anything alleviates whatever frustrations you’ve been having.

This is just different. And I’ve been told it’s one of the hardest things to help in any autistic individual.

And frankly, that just sucks.

In the meantime we’ll hold out hope for this new med, and try to distract you with other pursuits whenever we can. We will prevent you from inadvertently hurting yourself or destroying things. We will hold you when you are overwhelmed and frustrated.

We will be there for your tears.

As long as we can, we will always be there.

As long as we can we will love you through this, and everything else that comes our way.


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  1. Grandma said,

    This issue moves me to tears with you. It hurts my heart to see him in such pain and the family so stressed and sad. When Justin smiles he lights up a room and our hearts. I pray that this new med will work as well so our sweet boy can enjoy his life to the fullest. Love, grandma

  2. Joyce F said,

    *Hugs* Tears swell up as I can certainly relate to this & many of your encounters. We want so much for our kids and this is probably the most heartbreaking…not being able to give them what they want. In the end, we can only love & endure and do the best that we can 😊

  3. Amanda said,

    (((((Hugs)))))) and crossing fingers this will pass for you all. I’ve said a prayer and wish you the best.

  4. Roberta said,

    Sad to hear Justin has lost some ground. So many of your posts used to be radiant with the joy of Justin’s improvement. Hope this is a phase. Best of luck. Is Justin still horseback riding? Don is but I haven’t been able to bring myself to get back on.

    • Thanks, I don’t think this is a phase unfortunately, but we’re trying to make the best of it. Justin doesn’t ride at Rein Dancer anymore. I truly hope you can get yourself back on, I know how you loved it. I miss our Saturday talks!

  5. My children are both in camps today and I went for a walk and I looked at every house like, “would THIS be a good place – ie a place where he’d have his “own” space – where G could live with me when I am old?” Then I strategize about what agency I could entrust it to after I am gone to oversee my G for the rest of his life. Fun thoughts…I hear you loud and clear.
    Sending sisterhood,
    Full Spectrum Mama

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