“Zach, Mommy’s taking care of Justin” I call to my littlest love as he once again requests juice and pretzels, a snack he is perfectly capable of getting for himself (but it’s so much more fun to ask mommy to get it for him). I turn to go back into Justin’s bedroom and find my son, who moments before was laughing with me, is now prostrate over his bed, bent in half, eyes fluttering, lost to the world. It’s a position we’ve seen him in dozens of times daily the past two months, and it happens in an instant. One moment he’s engaged- one moment he’s lost to us.
My pain on seeing him like this has not diminished over time either.
We are still not sure what is going on with Justin, despite the expert advice of two different doctors (welcome to autism and all its accompanying fun). We have begun weaning him off one medicine and instituting another, but the progression of this titration will take almost eight weeks, and then we will have to wait another week or two to see if this switch is really working for him.
Have I ever mentioned that waiting is not my forte?
We are doing everything we can. We have tests scheduled. We have his wonderful school taking data on his “spells” so that we can prove he’s getting better, worse, or staying the same. We’ve told his therapists and bus drivers so that they know what’s going on. We’ve talked to Zach about it and let those in his world know what’s going on in case he seems upset. We’ve dotted “I’s” and crossed “T’s”.
We’ve conquered so many challenges with Justin over the years. Insomnia has been put to rest (hah!), his aversion to eating anything other than a carb has been subdued (he eats broccoli now!), and aggression is mostly a thing of the past. I attribute most of our successes to Justin himself. He is a child who loves to be at peace with his world, and when not battling the challenges autism has brought his way he is one of the happiest people on the planet.
And yes, I know how lucky we are.
We have not changed our mode of attack on whatever is besieging our son over the years. We take a broad approach, get second and third opinions, and ask anyone and everyone who knows and works with our boy for their advice. Generally with this information we’ve been able to piece together a plan, and up until a few months ago, this strategy has worked for us (and we hope still will work for us). I don’t plan on changing our methodology any time soon.
But I did realize a few years ago that one thing I had to change was myself.
I try to take care of myself, I really do. While I won’t be gracing the Sports Illustrated Swimsuit Edition any time soon I’m in reasonably good shape for a woman of a certain age (!). I exercise, I eat decently (chocolate intake excluded), and I try to carve out time for myself. I knew my family was under considerable stress much of the time, but I’d accustomed myself to living that way. Or so I thought, until the day I went to my GP for an ear infection and they took my blood pressure, freaked out, and wouldn’t let me leave the office.
I realized while talking with my doctor that there wasn’t much I could change externally about my life. Justin’s severe autism was not going away, and there would always be more challenges. I was already taking care of myself in terms of sleep, diet, and exercise (most of the time). There wasn’t much on the outside that I could do to reduce my stress levels.
But the inside, that was another matter.
I’m a planner, have been since I was a little girl, and there’s just no changing that about me. When dealing with Justin’s autism I’ve often found myself needing a plan B or C, and having those alternatives has served us well. But the truth is no matter how well prepared I am with him, sometimes I’m still blindsided by a meltdown or resistance from my son who is now taller than me.
In other words, even I can’t control everything.
But what I have learned is that in some instances I can control myself. Justin’s spells often come at inopportune times, like when the bus has come or I have to get him out of the house for an appointment, or when I want to get him into bed so I can take care of his brother. I’m trying to practice my own advice these days, because when he’s in these episodes the only thing I can do is wait it out.
Again, not my strength.
But this is becoming my strength, because I need to find that calmness, that release of control, for my health, both mental and physical. I remind myself that these episodes always end. I remind myself that so often things with autism are cyclical. I remind myself that I’ve built in extra time for just such an occasion as this.
I remind myself to breathe.
And he’s always come back to me my boy, and by letting go of as much of my anxiety over this that I can the mom he’s coming back to is happier, healthier, and more whole.
I can only control myself.
And hopefully, I will continue to find peace.
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