He stands alone in a corner of the dining room, having triumphantly liberated a toy from the garage I haven’t seen him play with in years. It’s a big material-covered cube replete with favorite nursery rhymes, and every side has something three dimensional to grab onto. I hear the sound of the spider string pulling and the familiar notes of “Itsy-Bitsy Spider” roll through the house, followed by something far more important, my son’s laugh. Not a chuckle. His big, loud belly laugh, a cacophony of sound I haven’t heard from him in over a year.
It is beautiful to hear.
Justin has gone through so much these past twelve months, from spending hours a day frozen, to having his sleeping and eating impaired, to a return of the unwanted aggression that reared its ugly head for a while. I will be honest with all of you- this past year has been horrible. It’s not only that I had to watch my child suffer. I had to witness him regress in many areas of conquered skills, and watch him lose any interest in his few activities outside of our home. I saw his personality diminish, observed his usual affectionate persona disappear.
Frankly, it’s been hell.
We are not totally out of the woods yet. He still has some aspects of the movement disorder we’ve come to believe is tics, but he is vastly improved, able enjoy his favorite pastimes again, the computer, his DVD player, his toys. We’re finally getting to see some smiles again, and once in a while a laugh, which is restorative to my soul. I won’t lie to all of you though- he is different. Not as playful as he once was, not as present, not as engaged in school as he used to be.
I know Kim. Baby steps.
Believe me, I am so grateful the renewed aggression has all but disappeared. His sleeping is back on track. He’s now eating at least two good meals a day, and regained some of the weight he lost distressingly quickly this summer. He makes more eye contact now like he used to, and his words are slowly returning, albeit without the clarity they once had. He’s doing better, but that exuberant joy has yet to be seen.
And I will tell all of you, I want it back.
Justin, as wonderful as he is, has been very challenging over the past fifteen years. Even at the worst points- insomnia, refusal to eat, refusal to potty train- he’s still had that “spark,” that unique element that made him Justin. It seems to be dormant now except in brief flashes, flashes which seem to be returning in more frequency every week. Trust me, this is not an aspect of his personality that a casual observer would notice. But to those of us who teach him and love him, it’s evident.
And I’m hoping that this trend we’re seeing will bring us back full circle to our ebullient boy.
Please keep your fingers crossed for him too.
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