October 5, 2016

I See You

Posted in AMT's Faves, My Take on Autism tagged , , at 1:51 pm by autismmommytherapist

Justin's First Digital Pics 056

 

Dear Much Younger Me,

 

I see you, with your white-knuckled grip on your eldest son’s stroller.  I watch you struggle to maintain his diaper bag on your arm and not lose your grip on the incomplete, badly-stapled articles with the word “autism” in the title that your utterly unempathetic pediatrician just thrust into your hand as he wished you an ascerbic “good luck.” I witness the white hot fear that’s been washing over you in waves take up a permanent residence in your heart.

I see you.

I watch as you wonder what could have possibly changed between your last visit a month prior where said doctor was not overly concerned about your toddler’s development and today, rage competing with denial competing with acceptance competing with overwhelming sadness as you trudge to your waiting SUV to call your husband at work.

I see your confusion.

I see you as you tell relatives, friends, neighbors about his eventual diagnosis, cringing every time a well-meaning soul implies he’s so young, he’ll grow out of it, he’ll be okay.  I watch as you try to figure out what okay really means, realizing your definition is going to radically change.

I see your sad heart.

I watch as you go through Virginia’s Early Intervention process and witness your disbelief as you realize they will only offer you eight hours a month of therapy, no ABA, despite having a formal diagnosis.  I see you realize that since your insurance won’t cover ABA you will have to deliver his services, will attempt to do at least thirty hours a week with him for at least a year until your beautiful boy is eligible for a pre-school program.  I witness you process what this will mean for your relationship with your son, your ability to work, your life.

I see your rage.

I see you and your husband less than a year later realizing the pre-school program offered by your county is not enough, that Justin will never get the one-on-one aide he needs both for his academics and for his need to be engaged. I watch as you process this means you will have to move back to Jersey, and despite leaving most of your friends and putting an end to your now on- hiatus- career, you are grateful you have the choice.

I see hope spark for the first time since his diagnosis.

I watch as you slowly comprehend your boy, despite everyone’s love and work and patience, will not shift to the milder end of the spectrum, will instead dwell on the more severe end for life. I see you struggle to change, not diminish (not ever) your expectations of what his life will be.  I watch you refuse to regard this altered life plan with sadness if only he will sleep/eat/not aggress/not suffer/please oh please be happy. I witness your bargain with the universe that those glimpses of transcendent joy that keep both of you going will become the norm, not the anomaly.

I see that you are very tired.

I see your hope spark again for your second baby, conceived the old-fashioned way rather than a test tube in a sterile lab in Virginia. I watch as you plead with the powers that be that he’ll end up in the 90% of siblings who don’t have the neurological disorder, not because you view an alternative neurology as a bad thing, but because you don’t want to watch him suffer too. I watch you wonder if your marriage can handle this again if lightning strikes twice.

I see both your fear, and your joy.

I watch as your second son develops typically for eighteen months, and although you know he’s not out of the woods yet, I see you tentatively explore the possibility of baseball games, playdates, a first crush.  I witness you and your husband reel in despair after two back-to-back illnesses seem to claim your child, leaving a non-verbal, cranky, not-present child in their wake. I watch as your husband clings to hope and you spiral into despair, dwell there for months.  I see hope kindled in you both as your son slowly reemerges changed, but healthy, happy, and making progress every day.

I see you come out of the abyss.

I watch as together you conquer hurdle after hurdle for years, immersing yourself totally in their world, fighting for a toehold on every skill.  I see you doubt your eldest will ever be potty-trained, eat anything other than carbs, sleep through the night.  I watch your all-encompassing relief as he eventually does all of these things, all in his own time. I witness your exuberant joy as your youngest regains his words, makes attempts at social contact, thrives in his local pre-school program.  I watch as you put your life completely on hold to make every second, every interaction with them, count.

I see you lose yourself.

I see that fear that took over your heart loosen its clutches, as your eldest, despite some relapses with aggression, emerges into the affectionate, kind, happy child you knew was in there all along. I watch as your second son challenges you with his high energy level (if only you could borrow some) but eventually mainstreams, has friends, makes mostly good behavioral choices with ease. I witness your forays into your own social world, your reduced anxiety levels, your reemerging smile. I watch you actually have fun.

I see you find yourself again.

I see setbacks, and struggles. I see accomplishments, and triumphs.  I witness your rebonding with your husband, as you embark on some of the trappings of a more “normal existence,” whatever that is. I watch as you integrate autism into the fabric of your life, a patch (or two or three) on your quilt, but not the whole quilt, not anymore.  I see you begin to breathe.

I see you, forever altered, indestructible, happy.

I see you.

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9 Comments »

  1. Mary Lou Cancellieri said,

    Life changes, but it will beautiful in small doses. It will be created to hold all the pieces together. Love will be the glue. Mary Lou

  2. william preston said,

    Truly amazing!!!!! I do not know how I could be any prouder of you all!!!! so lucky to have you all in our lives!!!!

  3. Sofi said,

    This has made my day, and compensates for the last 3 weeks, when my son was diagnosed. Thank you for such beautiful words and the strength you communicate with them, thank you for the hope tha there may be better days, thanks a lot!

    • Thank you! Hang in there, I hope things get better for you too. Please remember to take care of yourself!

  4. Jen K. said,

    Needed to read this today (1 year and week since diagnosis) after yet another night of our non-verbal son being up for over 3 hours jumping, running and loudly babbling for no clear reason. His sleep doctor said we are doing all we medically can and just need to stay the course, as my husband and I look at each other like our lives will never come out of this abyss. You give me hope! 🙂

    • Hang in there! I never promise anyone it will get better, but I’ve seen so many of my friends’ kids with moderate to severe autism eventually sleep through the night that I have hope for you. Some of them have used different techniques, some melatonin, some medications. I hope you find what’s right for you, I know this is really tough!

  5. Beyond beautiful. You’ve helped me to cherish and forgive all i have felt, endured, enjoyed through your generous sharing and wise self-talk. What a journey. I am so grateful to be on it “together.”
    Thanks and love,
    Full Spectrum Mama


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