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April 20, 2017

Alex’s birthday was today.  He turned 10 years old.  He’s into double digits now!  An auspicious anniversary, for sure.

I’d love to regale everyone with jolly tales of celebration and parties and streamers and balloons and presents.  But there wasn’t much of that.  In fact, I was the only family that physically saw him today. Plenty of reasons for this. I did try to make it as nice for him as I could, however.

Alex has been living in a group home for boys with autism for 8 months now.  Other than a few brief trips back home to celebrate the major holidays with us, his time has been spent at the group home or at school—a special place exclusively for kids with autism.  This has provided him a certain order and predictability—a routine that he can adapt to, that doesn’t add to his anxiety. Keeping him mostly at the group home was preplanned by Kat and I as a means of establishing and reinforcing his home there.  The staff agreed with our strategy.  It seems to have worked.

I haven’t written much about how he’s doing.  To be honest, I’ve been struggling—to describe the strange calm in our house in his absence, to measure the angst we feel knowing that someone else (many people actually) are feeding him, clothing him, trimming his fingernails, toileting him, tucking him into bed.

If you read my Facebook feed, you may know that Kat, Drew and I have enjoyed some far-flung adventures in the past 10 or so months, traveling to Europe twice, then to California for spring break.  All without Alex.

This is what’s hard to describe.  A feeling of juxtaposition, of being torn—between struggling to care for him under our roof while his behaviors corrode our patience and morale—and reveling in the swells of newly remodeled bathrooms, freshly painted (and repaired) walls, uninterrupted mealtimes, and even—gasp! —the time to travel away from home further than a short car trip.  All of which feels luxurious and extravagant.  And gratuitous.

While Alex spends the better part of his days at a group home.

Is this life? Is this living? For whom?

Yeah, we are living.  We are fine.  Kat loves to travel.  I do too—I even get paid for it.  Our lives have become easier.  But is this a good thing?  What would Alex say?

What would Alex think? An incredibly simple, obvious question.

Does Alex think?  What does Alex think about?  How complex are his thoughts?  Does he think only of himself?  Does he think of his family? What the hell is going on inside that mop-haired head of his?

I am fortunate to have widely varying interests and activities that vie for my attention.  But if you ever want to see me fall into a deep, sticky hole of rumination, just ask me if I have any idea what goes through my son Alex’s mind.

Yes, Alex is still nonverbal.  Yes, he still is prodded daily to use his iPad in the attempt to bridge the chasm between what he thinks and what we know.  But it’s slow going.  And not easy.  We’ve replaced Alex’s helmet, the one he wears to protect himself from, well…himself, twice in the past year.  It gets plenty of wear and tear doing its’ job.  It’s a sign that Alex gets frustrated a lot.  Still.

Which makes his birthday today a little bittersweet.  10 years seems an epoch ago, yet as vivid as this very moment.  So much has changed in that time.  And yet, with his mannerisms, Alex doesn’t seem much older than a toddler.  Besides, what kind of gifts do you give to a 10-year-old toddler?

I’m not trying to be grim about it.  Much of what Alex and autism has uncovered and demonstrated for me is fascinating and rich.  I consider him a gift that I don’t even fully appreciate yet.

I came by Alex’s school at lunchtime with cupcakes for everyone.  Those, plus a lengthy session of bubble-blowing seemed to leave Alex pretty satisfied.  Tonight, I planned on spending the evening with him at the group home.  Another round of cupcakes for the staff (and him of course) along with more bubbles.  But—I wanted to stay with him until he fell asleep.  That would be my “gift”.

The treat of watching endless YouTube Sesame Street videos after getting snuggled up by Daddy in his favorite fuzzy blanket was enough to elicit smiles and giggles.  He finally fell asleep next to me watching “Ladybug Picnic”, one of my all-time favorites. I think he liked my gift.

See what I mean?  I have guilt, frustration and lots of unanswered questions.  But I also have a wonderful, unique boy with an infectious giggle and endless kisses when I ask for them.  I think he gives me more gifts than I give him.

From → Alex, Autism, Family Stuff

One Comment
  1. Wanat permalink

    David, I have followed your blog for awhile now, after Heather and Jeremy made me aware of it.

    For many years I worked as both an RN and a social worker with developmentally challengeed children and adults, both in group home setting and hospital units. I could clearly visualize many of the situations you described, both while Alex was living at home, and now in his new living situation.

    I would like to say I understand, but we both know that the internal stuggle you experience is so individual that it would not do your anxieties justice. …but I can try…

    My own feelings when I read this latest entry was that I wonder if it would help you in any way to realize that when you sought some help in sharing care for Alex, hoping you where making the best decision for his overall welfare, safety and growth, your sharing the burden made so many other peoples lives worthwhile, and they are glad to be there for you and be able to share their time and skills and caring natures. In Alex unique way, he is bringing some joy and meaning to the lives of his new friends, caregivers, teachers, etc. For some people it will really give them a reason to get up each morning too.

    You made a very brave decision in trusting them to be there for Alex when you understandably could not. I will definitely be adding you and your loving family to my prayer list, hoping that this new path you chose for him will give you the peace and more restful and relaxing days you all can spend together feeling guilt free. You and your ENTIRE family certainly deserve it❤️.

    Cousin Joan Wanat

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