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It’s hard

July 13, 2016

Drew likes sitting with me on the little wooden bench outside our home. It’s after dinner, after Alex has gone to sleep, usually.

Yesterday, while we sat together enjoying the warm summer evening, he turned to me.

“It’s hard living here. With Alex.”

The tone of his voice was soft and thoughtful, reflective. Hoping to open that door a little wider, I asked him to elaborate. Drew was quick.

“Alex is whining and hitting himself so much now…all the time.”

I also heard frustration and sadness.

“It’s just…hard.”

Along with Alex’s caterwauling and the obvious discomfort of seeing him wallop himself with his fists, or his tablet, mom’s cell phone or whatever’s hard and nearby, Drew receives little of what a typical sibling might receive in that rambunctious interplay that brothers have.

His is a brother that only shares disquiet and tension–and the occasional thrown punch or kicked shin. Little more. For his part, Alex siphons much more from mommy, daddy and everyone else, including Drew. Alex is not much of a companion. Definitely not like my brothers were to me, even when we were impetuous punks to each other.

But still Drew tells me he loves his brother. He tells me often.

And even while we were on a much-needed vacation in Italy earlier this month–and with it all the richness and beauty of this gorgeous land, Drew would sometimes confide in me, all of a sudden.

“I really miss Alex.” A completely disarming innocence in his voice. “I wish he could be here with us.”

Alex couldn’t, of course. He is far too volatile, far too impatient and far too disregulated to be locked inside an aluminum tube with 200 other passengers for over 10 hours.

Even so, Drew feels like Kat and I feel. All our joyous trips to the beach, or out for gelato or just soaking in the sights…none of it was quite as complete without Alex. Ours wasn’t a true family without him.

This is one of our goals, but we’re not there yet. Today, Kat and I took Alex to tour a small group home.

On the surface, it’s the opposite of including Alex in our world.

It’s a place where autistic boys, aged 10 to 18, might live under special circumstances. And with special supervision. We were invited to leave Alex under the simple premise to see how he would react.

Frankly, this rationale had less to do with Alex and more to do with the other residents of the home. If Alex was going to take too much of the caregiver’s efforts and attention, he might not be invited back. Today was a test for him.
I don’t think you can study for this type of test. You just go and do and let the chips fall where they may.

We did.

Initially, Alex was upset. This necessitated us fastening his helmet to his head. Which got him even more riled. Luckily, Kat remembered that she had packed some bubble juice and a wand. “How about some bubbles, Alex?” She asked.

Like a Hindu snake charmer and his pungi, Kat was able to distract Alex from any other disruptive behavior long enough for us to sneak out the door for the two hours they requested to evaluate him.

I am cautiously pleased to say that Alex seemed to have a ‘typical’ time at the group home. We will hear more later on this week, presumably with more information on what support this group home can give Alex. And us, of course.
Because…for Alex–he needs constant supervision. He needs careful assistance with everything from toileting to tucking himself into bed and so much more in between.

And we as his parents are tired. And weary. It’s hard, just like Drew said. We feel guilty too.

But like Drew said, we still love him. We always will.

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One Comment
  1. Margaret permalink

    Praying for you and your beautiful family. Thank you so very much for sharing. Love, Peggy

    Sent from my iPad


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