Monthly Archives: February 2013

Bath

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Three rubber ducks in foam bath

Three rubber ducks in foam bath (Photo credit: Wikipedia)

Evan loves water.  He loves to swim, and loves oceans, and rivers, and baths.

He loves water so much that once he left a neighborhood party (in early May), and wandered onto a neighboring property.  He shimmied down an embankment, walked along a retaining wall until he got to a low point in the wall, and jumped down, into the pool area.  I noticed he was missing, ran across the front lawn of the house we were visiting, and saw him down in the next door neighbor’s backyard pool area, standing on the edge of the diving board.  He was peering down toward the water, grinning, and flapping his arms.

I simultaneously screamed for my husband  (or maybe I just screamed unintelligibly, which is far more likely) and ran toward the pool area, hoping that the gate was unlocked so I could get in without any of the gymnastics Evan had performed.  By the time Randy and I got to Evan, he was in the water.  We reached down and yanked him out…cold and sputtering, he looked at us for a second, and walked off, splash splash splash, down the driveway and back to the party.

Since then, we’ve really worked very hard to keep him out of the water.  (We’ve also worked on his swimming skills).  We’ve never had to try to get him into water.

Until last week.  Last week, Evan decided that he has had enough water and never wants to get into the bathtub again.  Not that he told us this.  He didn’t have to.  He just stood outside the tub, buck naked, looking in, and refused to move.

Evan’s a skinny kid, but crazy strong.  Have you ever forced a 50-pound naked kid into a tub?  It isn’t easy.  Ever tried to reason with a naked autistic kid?  Virtually impossible.

We’ve had conversations like this.  “Evan, get in the tub.”
Evan:  “Get in the tub.”

Me:  “Evan, get in the tub.”
Evan:  “In the tub.”

Me.  “Evan.  Look at me.  Do I look happy?  Or Angry?”

Evan:  “Happy or Angry.”

Me:  “Mommy is angry.  You need a bath, Evan.”

Evan:  “You need a bath.”

Finally, I put one of his favorite Youtube videos on my phone.  I get the video queued to the opening scene and pause it.  Evan yells.  I tell him I will play it when he gets in the tub.  He dips a toe in.  I press play.  He pulls the toe out and up into the air.  I press pause.  I tell him to stand in the tub.  He puts his toe back in.  We go on like this until I start demanding that he stand with that foot in the water and put the other toe in.  Play, pause. Foot in, play, foot out, pause.

This goes around and around for an hour or so.  AN HOUR OR SO.

The next night we repeat it, maybe getting him standing on both feet for the duration of the six minute video, while we essentially sponge bathe him in the tub.  On subsequent nights, we move to squatting down, kneeling, sitting with one arm raised up in the air (we still have no idea what’s behind that move).

During the day, we remind him, “Evan, tonight you’re going to take a bath, right?”  He looks right at me, smiles, and says, “Angry!”

But at night, we’ve made incremental progress.

Until yesterday, when we started at zero again.  We don’t know why this happens.  We’ve adjusted for all variables…time, temperature, tub toys, washcloth.  I asked him if he’d rather take a shower, and he practically flung himself from the tub to avoid the terrifying shower head.  Tonight, we’ll start all over again.

I wish I could say that there is some magic formula that is going to stop all of this, but I know better.  It is more likely that eventually we will slowly work back into the bath habit, until the next eccentricity comes along.

Siblings

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35567_1445819738044_2510457_nThe profound effect of autism is often felt most acutely by the siblings.  It can be painful see the degree to which even typical children have been transformed by this strange and unpredictable affliction.

Like so many other kids, Evan’s siblings handle our situation with surprising humor, candor, and pragmatism.  They are matter-of-fact in answering questions about their brother and about autism.  But their comments can often reveal that this autism thing is bigger than they are.

One day, about a year or so ago, Ryan had a friend over.  As they were walking from the basement playroom up to Ryan’s room, I heard the friend ask, “So, I forget, why doesn’t your brother talk again?”  Ryan sighed, “Because he has autism.  I’ve told you that, like, a million times.”  The friend pressed further, “But what does that mean?”  and Ryan calmly explained, “It just means he can’t always play and he doesn’t really talk.”  And then, after a pause,  Ryan added “…I have no idea how he’s ever gonna get married, though.”

After I stopped laughing, I had plenty to think about.  That simple conversation told me so much.  First, that Ryan is more practical and matter-of-fact about Evan’s abilities and needs than most adults I know.  But also that Ryan still can’t quite figure out how Evan’s going to fit in to the grownup world that awaits them.  I didn’t chime in, although part of me wanted to assure Ryan that I know plenty of people who would be thrilled to have a spouse who could keep his thoughts to himself.

Elena is equally unimpressed by Evan’s symptoms.  In fact, she seems to think she’s a bit of an autism expert.  One day, when she came home from Kindergarten, I was asking her about her day.  As I often do, I randomly asked about specific kids, mainly to encourage her to consider all of the kids as her friends (and not just the two or three that she always wants to tell me about).  “How’s Susie?”  “Oh, she wasn’t there today; she was sick.”  Oh.  I thought of another kid I noticed when I last volunteered at school.  “How about Billy?  Do you ever play with him?”  She looked thoughtful for a moment.  “Sometimes.  But he has a little bit of autism.”  That one stopped me for a moment.  “Really?  Why do you say that?”  She shrugged, and picked at her sandwich, saying “Well, he kind of makes funny noises sometimes, and does crazy stuff with his hands when the teacher is talking.”

Hmmm.  “You know, honey,” I started cautiously, “There can be lots of reasons a kid would do stuff like that.  I know that you are used to autism, but that’s not the only thing that makes kids act differently.  There are lots of reasons Billy might do that stuff.”  She considered that for a short moment, and then shrugged again.  “Oh.  Okay.  Well, whatever he has, Jimmy has it, too.”

Super.

I have to admit, this story cracks me up.  It is important to remember that there is nothing at all mean-spirited about it.  The remarkable part of this story is how unremarkable an autism diagnosis seems to Elena.  It’s just another thing some kids have.  I realize, however, that to the mothers of her classmates, this story isn’t funny at all (be assured that the kids’ names have been changed).  But autism has been a part of Elena’s life since she was about two months old.  To her, it is totally normal.

This is not to say that it doesn’t cause pain for Elena or Ryan.  When Evan starts to tantrum, and I see Ryan’s entire body recoil and tears spring to his eyes, I realize that the kids have had a lifetime of emotional upheaval.  When Elena said, at around age four, “Why don’t Eban lub me?  Ryan lub me.  Eban don’ lub me” it rocked my world.

So, what do we do?  We have therapists.  We have sibling groups.  We work to involve all of the kids in activities that they can enjoy together, regardless of ability—skiing, sledding, swimming.  We also make sure to give each of the kids time alone with us, and time with typical kids.   And, we worry.  We hope that we are giving them enough tools to process this crazy life they’re growing up in.  We hope that they have enough good stuff in their lives that, 30 years from now, when they look back on their childhoods, whatever PTSD we’ve subjected them to will be outweighed by the happy stuff.  And that they grow up to have a healthy bit of confidence in themselves and a decent amount of compassion for others.