Special Siblings: Why It Doesn’t Have to be a Snowman

 

It doesn't have to be a snowman

Photo: Disney

In honor of Autism Awareness Month and National Sibling Day (April 10), today’s post celebrates the unique, complex and extraordinary bond between special needs “Sibs” and their differently-abled brothers and sisters.  


Do you wanna build a snowman?


Come on let’s go and play

I never see you anymore

Come out the door

It’s like you’ve gone away
We used to be best buddies

And now we’re not

I wish you would tell me why!
Do you wanna build a snowman?
It doesn’t have to be a snowman.

Like many a kid-friendly household across the land, Frozen-mania has besieged the kingdom of Kimrendelle.  Our kids like it, too.

Elsa and Anna’s relationship dearly reminds me of the complicated yet loving “Special Sib” relationship our two boys also share.  The elder sibling carries a unique, isolating burden that no one –save their parents– can understand or appreciate.

We’ll protect her. She can learn to control it. I’m sure. Until then, we’ll lock the gates. We’ll reduce the staff. We will limit her contact with people, and keep her powers hidden from everyone. 

Meanwhile, Elsa’s younger sibling is feisty, fun-loving and carefree.  She’s bewildered by her beloved sister’s rejection.  Elsa appears aloof, reclusive and (intentionally) unavailable, emotionally.  Yet Anna pines for her sister’s attention, friendship and companionship.

It’s an all-too-familiar scene that makes my autism-mom-heart ache.

We’ll protect him.  He can learn to control it.  I’m sure.  Until then, we’ll lock the doors.  We’ll increase the therapy staff. We will closely monitor his contact with people, and keep his atypical behaviors hidden from everyone.

 

“I wish you could tell me why!”

Playing

“I wish I had a regular brother, so he could play with me.  Sometimes, I wish I didn’t have an autism brother…”

Like Anna, Justin longs to play with his older sibling.  He can’t understand why Jeremy appears to shut him out, repeatedly ignoring his pleas for attention.  From birth, Justin has instinctively understood that capturing Jeremy’s attention is a rare and costly prize.  Tragically, both Elsa and Jeremy desperately crave that closeness, too.  But neither is able to explain why it’s not possible.

Or so they think.

 

Neither snowman nor Rain Man

Arendelle’s king and queen’s frantic attempts to separate Elsa and Anna reminded me of “Rain Man,” (Yes, we ASD parents feel ambivalence towards that movie.  Just Let it Go for a moment.)  In the film, Tom Cruise’s character, Charlie, learns the existence of a grown older brother he never knew about, Raymond “Rain Man,” an autistic savant.   Charlie discovers that their parents had institutionalized Ray, intentionally raising the two brothers apart.

That’s why they put you away.  They thought you’d hurt me.

At the reading of the will, their father left his entire estate of $3 million dollars to Raymond.  And Charlie?  All he got was rose bushes.  He was furious.  I wondered if Charlie’s self-centered reaction would have been different, had they had the chance to grow up together.

As a special needs parent, I so get this.  Our departure from this earth and Jeremy’s subsequent care are never far from our thoughts.  It’s tacitly understood that we will leave everything we have in a Special Needs trust for Jeremy. As I age, I’ll probably start to pawn off any jewelry and valuables, to contribute every possible cent towards this fund.  And Justin?  He will inherit the delicate and thorny responsibility of caring for his disabled older brother for the rest of their lives.

 

“It’s just you and me.  What are we gonna do?” 

"I know you're in there.  Please just let me in..."

“We only have each other.  It’s just you and me…”

Please, I know you’re in there,

People are asking where you’ve been

They say “have courage,” and I’m trying to

I’m right out here for you,
Just let me in

We only have each other

It’s just you and me

What are we gonna do?
Do you wanna build a Snowman?

That scene destroys me every time.  Every. Time.  To imagine the day our boys lose both of us.  To imagine Jeremy unable to comprehend why we are no longer around.  To imagine our non-verbal son unable to ask where, why, or what happened, and unable to articulate his grief.  To imagine both sons longing to console, and be consoled by each other.

It’s a scene I’ve imagined and reimagined –yet dreaded– countless times.  It triggers a morbid obsession and denial, all jumbled up together.  It’s an unthinkable thought I can’t help but think about.

 

Sibling fight delight

" ...But there is a friend that sticks closer than a brother..."

” …But there is a friend that sticks closer than a brother…”

Because of Jeremy’s difficulty with social skills and speech, our boys have rare opportunities to connect or play in typical ways.  We’re actually happy when they fight and squabble, just like any other siblings would.  It even took years of speech therapy to teach Jeremy to say, “Justin, STOP IT!”

I delight over how Justin gets in Jeremy’s face, demanding his attention.  I smile at overhearing Justin refuse to take No (a non-response) for an answer.  Unlike every other house in the neighborhood, we savor when Justin tackles, hounds or terrorizes his brother, just to annoy and get a rise out of him.

Just like any other pesky, feisty-pants sibling would.

 

It doesn’t have to be a snowman 

Stopped

Stopped, in the name of love.  Photo: Brian Dokko

Once in a while, we’re blessed with a glimmer of Jeremy’s love for his brother.  When the boys were 2 and 6,  Justin had toddled out into the street on impulse.  Jeremy protectively pushed him back onto the sidewalk (“Anna, you can’t marry a man you just met!”)  Justin immediately shoved back, of course.

We were floored.

If you know anything about autism or Theory of Mind, you’re floored, too.  My brother just happened to capture the moment on camera.

A couple months ago, we found a balloon toy: A simple game taking turns shoving sticks into a balloon until it pops.  But it yielded giddy squeals and interaction between the two of them.  WE’LL TAKE IT.

Just last week, Justin made up a silly impromptu game on a road trip.  They took turns slamming their fists into Jeremy’s arm rest, like two guys hammering an anvil in a cartoon.  They cackled and cracked up.  Suddenly, that inane exchange was the most precious thing in the world.  Justin lit up knowing he was responsible for drawing his brother out and making him laugh. I was tempted to snap a picture, if only I hadn’t been driving 75 mph.

At age 7, Justin may be too young to understand the neurological complexities of autism.  Why his brother behaves this peculiar way or that.  Why his brother doesn’t do this or that, “Just like other regular brothers.”  But he does appreciate how rare it is to have his brother laugh and play together.  He’s also growing increasingly aware how different his brother is.  But that something called autism makes Jeremy Very Special.

It doesn't have to be a snowman.

See?  It doesn’t have to be a snowman.

 

It doesn’t have to be 1:1 basketball in the driveway.  It doesn’t have to be checkers, I Spy, or whatever else typical siblings play.  As long as they find a way to connect, I will be profoundly grateful.  It doesn’t have to be a snowman.  

I’m immensely proud of the fierce loyalty and protection with which he already covers Jeremy (“Don’t you DARE make fun of my brother!  He’s SPECIAL.”)  I pray that Justin continues to grow in his love, compassion and care for his brother, in our stead.  Especially for the years ahead, I pray that someday,

o-FROZEN-facebook

Photo: Disney

‘For the first time in forever,
I finally understand.
For the first time in forever, 
We can fix this hand in hand
We can head down this mountain together
You don’t have live in fear
‘Cuz for the first time in forever
I will be right here. 

 

Brothers

Brothers Goofy and Aloofy

 

A friend loves at all times, and a brother is born for a time of adversity.

~Proverbs 17:17

 

…but there is a Friend who sticks closer than a brother.

~ Proverbs 18:24

 

 

Much press goes to special needs parents and individuals with autism.  But Sibs live acutely aware of autism every day, too.  You are unsung heroes for our families.  Special thanks to all our special Sibs: past, present and future.  May God bless you richly.

 

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8 Responses to Special Siblings: Why It Doesn’t Have to be a Snowman

  1. Jessica April 22, 2014 at 1:59 pm #

    Your writing and story telling get me every.single.time. Diane, this may be my most favored and treasured post of yours yet. Both of your boys are heroes in their own ways, but I am especially praying for Justin and his understanding and wisdom as he grows. Your family is so very loved. Kudos friend. Excellently written for those without a firsthand knowledge of that sibling relationship.

    • Diane April 22, 2014 at 3:57 pm #

      Thank you so much Jessica! That means the world to me. In fact, it’s partly why I do what I do: To pull back the curtain and share “our world” with folks who may not have firsthand knowledge, but earnest hearts to learn and understand… like you 🙂 So grateful for your heart for families like mine!

  2. Kimberly Quinn April 22, 2014 at 4:19 pm #

    You have such an ability to put into words what we see and feel. The specifics maybe different, but so many of the feelings are the same. Mine are older and it is the oldest who is typical, but I see the same desire to connect, to just be a sister not always a care taker, to have her sisters have the ability to enter her world as peers. From her earliest days my oldest has been the ‘”little mamma” and as proud as we are of her, a part of my heart will always miss the fact that she has never felt the freedom to just be a kid.

    • Diane April 22, 2014 at 4:47 pm #

      Thank you Kimberly! And oh, I hear you about your eldest… Birth order does make a difference: younger sibs never knew life any different, whereas older Sibs do/did. These “Sibs” clearly mature faster and take on far more responsibilities than peers their age ever do — simply because they had to. It can certainly be a blessed burden… and/or a burdensome blessing :-/ May God bless and comfort her with special favor, for the exceptional heart and responsibility she carries!

  3. roofth May 21, 2014 at 11:13 pm #

    diane, i keep coming back to this post. part of it because we are now a Frozen household here (soundtrack in the car 24/7, the boys – they are 4 and 2 – want to sing the songs at bedtime in lieu of bedtime books, they want to watch it multiple times a day, a lot of diva-like “let it go” belting while doing potty time, etc..) And what you write about is EXACTLY how i felt when i first watched the fictional sibling relationship. my sons are 2 years apart, and my heart goes out to my younger one (his name is also jeremy) who tries so hard to enter into his older brother’s world. i remember the day that they actually had a true back and forth interaction (it was in the backseat too, where i could not really turn around to relish it with my own eyes). my eyes welled up and i immediately texted my husband once we got home.

    • Diane May 22, 2014 at 3:51 pm #

      oh, friend… isn’t it amazing to find a parallel universe, in each other? 🙂 what a comfort to be reassured we are not alone in our unique experiences with our children! just amazing… thank you for sharing with me. please keep me posted on how their relationship develops and i’ll do the same. God bless you guys!

  4. Andrea April 4, 2015 at 12:40 am #

    I’m just bawling at this post! I was just today thinking about, hoping, wishing, that my kids could play better together. My daughter, typical and 6, and my son, 3 with extremely high special needs. This is why I stop and stare and take pictures every time they connect. Thank you for reminding me that it doesn’t have to be a snowman.

    • Diane April 7, 2015 at 1:02 am #

      Oh, Andrea… I know how you feel! 🙁 Just today, Justin said to me, “I want to buy Jeremy a birthday present. But what do I get him? A game to play with his therapist? A book to teach him to read? But he doesn’t read chapter books like me. Something he likes to eat? Mom, he doesn’t play with anything!!!” Nearly broke my heart… again. At the same time, it totally encouraged me to see how in tuned Justin was to Jeremy. Very few people could have even guessed that much, y’know? As much as it breaks our hearts, there IS an upside, that is blessing both our typical and SNK’s in a way that typical sibs can never know. Let’s trust in this, amen? Sending you a hug!

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