When Normal Is the New Weird | Special Needs + Typical Parenting (Belonging Neither Here Nor There)

 

Special nee


“If I find in myself desires which nothing in this world can satisfy,

the only logical explanation is that I was made for another world.”


Many of us hold dual citizenship: Card-carrying creds from the world of Special Needs parenting, and membership in the “normal” world of typically developing children (“Sibs.”) We occupy both realms, but may not feel legitimate or fully included in either.  For those of us chronically aware of our “Other-ness,” we’ve experienced feeling like an outsider, even in the midst of an intentionally inclusive, cultural diversity event. 

 

Good News, though: Our Other-ness can also work for our good. The upshot to never belonging anywhere…

 

 

 

When “Normal” Becomes the New Weird

Last week, I attended my younger son J2’s “International Day” at school. Like most grade school events, it was absolutely darling — if not a little visually incongruent.  A room full of predominantly Asian and Southeast Asian 3rd-graders (we live in Silicon Valley), resplendent in German, Chilean and Egyptian paraphernalia.

To be honest, I’m always hounded by Imposter Syndrome at these events, attending as a “normal” parent, that is.  After twelve formative years as SpEd mom to J1, first, I just feel kind of awkward at these things. Doing “normal” has become the New Weird for me.

For the record, I am an official, card-carrying, bona fide Normal Parent.  Typically developing J2 grants me access and unlimited passage into the Realms of Normal.  Part-time, at least. But the primary, baseline part of me?  I was born and bred a SpEd Mom, from the moment of conception I was thoroughly steeped in the arts of IEP advocacy.  That is my default setting; that is how I was christened and birthed into the world of parenting.

Those panicky Early Intervention Years, being thrown into the deep end of IEP’s, ABA’s, SLP’s and OT’s, have completely scrambled and reformatted my maternal DNA (“It’s imperative we do forty hours a week of intensive therapy, while his disabled brain is still malleable!  We must smash as much in there, before it hardens like wet cement in a sponge… sponge… sponge…!)

Due to those harrowing years, it became unimaginable to engage in any other way.  I expected All Things Public School to be difficult.  No disrespect, but it was like SN Parenting PTSD.  Over the years, I morphed and hard-coded into a Special-Needs-Tiger-Mom-Wolverine.  Or something like that.

Like a person who learned to drive only on a stick shift, I’d never known anything else.  Then J2 came along. Then I had to reboot, reset and re-learn parenting all over again,

“Why do you keep getting all these birthday party invitations? Are you supposed to attend every single one?  That’s like one a month?!  If you can’t go, do we still have to send a gift?  Do we have to invite every one of these kids to yours?  What about the girls?  And how do all these other moms know about Little League and Soccer sign ups?  How am I supposed to find out about these things?”

With J1, I never had to deal with these categorically Typical Problems.  J1 never got invited to parties and he couldn’t play regular soccer or Little League.  We were exempt.  Life was blissfully simple in that regard.  Only now, I had to slow down and learn how to drive an automatic, aka “How to drive Normal.”

 

"Group Project Germany"

Typical Parent Imposter

At International Day, all the other moms seemed to know each other.  They chatted freely, probably arranging playdates and coffees, talking yoga and Lululemons or what not.  I mean, I could schmooze, too, if I wanted to.  Schmoozing comes easily to me. I’m an ambivert, for crying out loud.  I can do social.  But right here, right now?  I just want to eat my German strudel and deep-fried Chilean plantain chips, and slip out the back door.  Quietly.  I just want to get out of here.

Because I feel like an Other. I may look Normal on the outside.  But I know I’m not. Because as nice as the Normal Moms are, if I linger to chat, the topic of our other kids will inevitably come up. My older son J1 with autism will come up, usually followed by a sympathetic,“Ohhhhhh!” at bestor at worst, an uncomfortable, “Oh, I’m sorry,”  <awkward silence here.>

Depending on how special needs-savvy the other mom is (or not), I’ll end up explaining to put them at ease.  I’ll smile harder.  I’ll pump up the cheer.  I’ll make the effort to allay any discomfort and assure them, “Oh, it’s fine, really. It’s really quite alright!”

“Smiles, everybody, smiles!” as Mr. Rourke from Fantasy Island would say.

I don’t look forward to those moments.  You never know what you’re gonna get.  Life has enough surprises, both good and bad.  Some surprises, you can just do without.  To be fair, I’ve been delightfully surprised on occasion. One time, Normal Mom was a psychiatrist who worked with kids with developmental delays.  Another time, Mom turned out to a fellow Special Needs Mom: a bi-ped, a bi-vo, a two-fer, a Neither-This-Nor-That, just like me.  We sniffed each other out fairly quickly and shared a relieved laugh, one of mutual understanding: we were Normal Parent Imposters.  Our cover uncompromised, we then we went our separate ways.


Hyphenated: Always Neither-This-Nor-That

It’s not that I’m ashamed of J1.  I’m immensely proud of how hard we’ve worked, to get to where we are today.  It’s just that even the slightest addition of pressure is unwelcome: the expectation and burden of knowing I’m about to “represent” My People.  And I want to represent, to educate and advocate so well, so bad.  I’ll even put on lipstick for these gigs, that’s how much.  But it can be wearying, always having to be on, even when you’re off.

Does anyone know what I’m talking about?  Or am I just navel-gazing here…

I suppose it’s not too dissimilar to how I felt growing up as an Asian-American (or Asian American if you’re from Cal Berkeley. NO HYPHEN, thank you very much.)  Fifth grade flunkie-bully “Vinnie” would spit into my second-grade face on the playground, every chance he got.  He’d yank my hair and taunt, “Hey, Ching Chong Chinaman!  Go back to China, you Ching Chong Chinaman!”  

Vinnie failed to appreciate that I won the spelling bee, and was likely more fluent in English (and gender and geography, apparently) than he.  In Vinnie’s expert eyes, I would never be, “a real American.”

But I’m not fully accepted as a Korean either.  Any visit to my “homeland” (I immigrated when at age three and grew up speaking English) is a stark reminder I’m an outsider there, too.  My clothes, my casual assertiveness and mildly entitled air, all scream American without having to utter a word.  And when I do speak Korean, the local grandmothers and aunties berate me for my shameful ignorance of my mother tongue.

Regardless of what country I stand, despite the militant NO HYPHEN stance of my alma mater, mine will always be a hyphenated experience:  Neither-This-Nor-That.  Both-and-neither.  Always.

 

Cast Away, “I have made fire!”

In the film Cast Away, Tom Hanks’ character attempts to assimilate back to normal life, after being lost at sea and presumed dead. At his welcome back party, he eyes a platter of crab legs. The camera lingers for a moment on the stacked platter. You know he’s thinking back to the years of desperately trying to catch a single fish, to fend off starvation.  And here sits a mound of crab legs, piled over and ignored.  So easy for the taking.  And nobody cares.

Later, he sits alone in the dark of his hotel room.  He plays idly with a portable lighter, flicking it on and off, repeatedly.  Eventually, he rejects the bed in favor of sleeping on the floor.  As he’d grown accustomed to.

So much agony and struggle. So much fight to survive:  to catch a fish, to light a fire. After countless failures, the moment he finally succeeds in igniting a flame, he stokes it into a raging bonfire.  He preens about and bellows in primal victory,

 

“YESSSS.  LOOK WHAT I HAVE CREATED.  I have made FIRE.  I.  have made FIRE!”

Such easy access to comfort, luxury and convenience.  All this, after years of isolation and suffering, trying to survive.  He can never look at creature comforts like beds, lights, or crab legs in the same way again.  He can never do Normal in the same way again.

Like soldiers returning home from the front-lines of battle, many who suffer from real PTSD, it’s hard to snap back from Hell into Normal in an instant.

Easy is hard to do, when Hard is all you’ve done.

 

WE.  Have made FIRE.  Together 

Over the last twelve years, J1 and I have fought to survive and make progress.  At present count, we’ve burned through over 72 professionals, educators, therapists and clinicians.  Along the way, we’ve flamed out on a handful of incompetent therapists, and raked over the coals not a few administrators who turned out to be flat-out lying, looking out only for themselves at public expense.  But fortunately, most of his Team have been amazing and extraordinary.  I thank God for those He’s sent into our lives, blazing with passion to teach, reach and push J1 to be the best J1 he can be.

Together, Team J1, we have made FIRE.  YESSSS.  WE.  Have made FIRE.

After over a decade of tracking and advocating, pressing and persisting to get what we need; after seasons adrift, feeling like no one would notice or care if we drowned; after countless days of working hard all night but catching nothing, but by the grace of God, our little family has flickered on to forge a way.

It’s no simple thing to flip on a switch and jump back into Normal.

Easy is hard to do, when Hard is all you’ve done.

 

Made for another world?

Despite nine years of typical parenting and dual citizenry, jaunts into Normal still feel like field trips; brief excursions from our real life.  I do live in Normal. I’m a naturalized citizen with proper certifications and such.  But I still don’t feel like I belong.  I don’t know that I ever will.

It’s an odd, lingering sense of unresolve.  Like those contemporary songs that end with a minor chord or an incomplete progression.  It begs for resolution.  Closure.  But the song ends, and there is no more.  Just an ache.  An umet longing.

I’m learning to embrace this tension, of never feeling quite at home: Never fully at ease as a “Normal” Parent.  But never feeling fully qualified as Special Needs Parent either (don’t we all feel like we’re failing every day?)

I’m learning to be comfortable with discomfort: even nurture an affection for this peculiar, cultural and spiritual dissonance.  It’s the same fondness I feel towards my 3rd generation Korean-American son (who speaks not a lick of Korean. His immigrant grandparents are forced to talk to him in English), as he waxes on about German pretzels, Gutenberg’s printing press, and Bavarian Motor Works.

This kid makes me smile, because his insides so don’t match his outsides, especially right now. It’s almost comical. Oh, cutie. You’re so not German. You’re not Chilean. And you’re certainly not fully Korean or American. But none of that matters.  It wouldn’t matter in the least if he’s wearing a sombrero, a fez or cowboy hat.This darling little head, his entire body, mind and being — he belongs to me.  This beautiful little guy with the fresh pair of rabbit teeth, he’s all mine.  That’s the only, most important identity he needs.  And I can’t wait to swoop him up to take him home, to tell him what a great job he did.

 

Eternal Dwellings

The truth is, we dual-identity/bicultural parents, we’re all kind of Clark Kent-ing about on this planet, aren’t we?  There’s a whole other life we live (perhaps even a secret identity) that the Exclusively Normals and binary, monoculturals couldn’t possibly understand.

Caught somewhere between Normal and Not, we occupy a clumsy space that is neither and both. We may never feel fully at home in either, and that suits me just fine.  It serves as a daily reminder that my only, most important identity, and my ultimate destination was never meant to be here.

 
For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven not built by human hands.  Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, (2 Cor. 5:1-2)

 

We’ve been delivered, and shall be delivered in full.  Meanwhile, this light and momentary
awkward is but a blip in eternity. Our forever destiny lies in a glorious elsewhere.  Let our Otherness work in our favor.  Let us be nudged along, to re-orient ourselves appropriately. Our citizenship is in heaven. And we eagerly await a Savior there (Phil. 3:20.)

Praise be to the God and Father of our Lord Jesus Christ, 
who has blessed us in the heavenly realms with every spiritual blessing in Christ (Eph. 1:3)
 

 

How have you experienced this sense of Otherness?  If you raise both typical and children with special needs, how has your “bi-cultural” journey been?  Do you ever feel caught in between worlds?  Or do you identify more with one?

 

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4 Responses to When Normal Is the New Weird | Special Needs + Typical Parenting (Belonging Neither Here Nor There)

  1. AveStellaMaris February 4, 2015 at 4:28 am #

    (Looking over top of reading glasses; typing into Wiki very slowwwleeee) “Lululemon”…. Oh, Athleta. Okay. “Ammmmbbiiiverrrt”. Aha. Right.

    Now then! This is what I meant when I said we are ambassadors from another realm. Who is going to know the beauties and terrain of that place without a translator? God gives us dual citizenship in this life so we can better see the next one, and so we can appreciate things like the luxury of a soft bed while not necessarily needing one for a good night’s sleep.

    So far, I do not have typical parenting experience. We have three children (2.5, 5 and almost 7) and from the top to the bottom, there is a gradation of special needs. W did not speak until he was 5 and both he and S only understand about 25-35% of what is said to them. The baby, C, is speaking more words and understands more than both his sibs combined at this age. But that said, he still has odd conversational methods and gaps in his mental milestones. So I have no real frame of reference for what is “normal”.

    I *do* know that all the things I looked forward to when we (finally) became pregnant — tee-ball, gymnastics, little league, sleepovers — I really didn’t miss when the reality of rearing real-life, flesh-and-blood children actually occurred. I honestly don’t know how typicals do it, all the running around and sports and events and yaaa-duhhh-yaaaa-duhh-yaaaaa-duhhhh. Mind numbing. I don’t think I would survive in the “normal” world. And my kids would likely resent me for being the mom who just can’t stomach all that hullabaloo.

    My kids aren’t typical but they ARE sweet, innocent and full of a kind of *life* that most typical children aren’t. By that I mean, no pining for the latest toy; no nagging to play Xbox (though we have one); no sulking because they don’t have their own iPhone. I don’t worry about them surfing the web and seeing things they shouldn’t; hating their siblings (they are all besties); or, most importantly, leaving the Faith. They play in the dirt, love their new puppy and know every first season episode of Curious George by heart. They know Scripture verses, do their chores, love the ABC’s, are learning to read and they have a sweet energy and enthusiasm that other parents marvel at.

    Since we homeschool and are surrounded by other homeschoolers, there is WAY less pressure to “fit in” and I am the author and administrator of my children’s IEP’s 😉 It’s exhausting some days, but when I hear my son reading aloud to me (this, the child who was “never going to talk”) it is driven home to me just how worth it all this work is.

    I used to feel self-imposed pressure to “represent my pippa” when we hiked up our packs on the road of SN. But as the years have gone by I find myself less and less “representative”. For me it’s more a case of, “So nice to meet you! These are my kids. Oh, your children are darling!” and they will sort themselves out. I might mention it, I might not. I might advocate, I might just smile instead. Some days I am have-it-all-together-smiling- serene-earth-mama. Other days I am haggard, tired, grizzled and barely holding on. Just like every other parent. I am less and less afraid to be “an example” either good or bad — HA! We jus’ doin’ our ‘do.

  2. Ruth February 4, 2015 at 7:35 am #

    YES. My default parenting mode is my ASD first-born too. It is truly strange to parent the second time around with an NT kid. I feel like a weird first time mom all over again. I co-lead a moms group at my church, and ever since the dx, being in that group was so difficult. Our topical studies always surrounded parenting, everyone’s kids were all the same age. Don’t get me wrong, it has been a great support group, but only for parents of NT kids. I felt like I wanted to jump out of my skin in tears every single meeting. It’s gotten a lot better though, now that I’ve had some time for the dx to settle in and we’ve (the group) changed directions and our study topic is now something else. I still feel like an alien/imposter among parenting circles, but I’m learning to fake it a bit (fake it til you make it?) and try to relate and build bridges by trying to find common ground based on my own experiences with my NT second born. But it sure is weird!! Because even my parenting journey with him is not quite typical either, because of how my first born initially “trained” me to be a parent. I see everything so different from others around me. The bi-cultural analogy is such a similar dynamic, I agree!! (I’m
    2nd gen Chinese American)

  3. Anonymous February 4, 2015 at 9:03 am #

    What you do with words is amazing!!!! I savor every post!

  4. Anonymous February 4, 2015 at 9:22 am #

    I could totally relate to so much in your post! I have felt the “otherness” throughout life as a: Korean American born and raised in the U.S. barely speaking any Korean, as a PK who couldn’t wait to escape that microscope/fishbowl the minute I left for college, as a full-time working mom who feels the pressure to be awesome at her job at the same time trying to be 100% there for my 3 children, and of course as a SN parent with two normally developing kids who need just as much attention as my little Andrew (who is autistic). My “otherness” has me stretched tight across several places, and I pray God keeps me nice and limber. (Haha, like I’m playing Twister and trying to keep a limb on every dot without falling over!)

    I think one of the hardest things is when I know going somewhere like a playdate or party with someone would be fun for Andrew’s siblings, but I always have to consider if we could go with Andrew. A lot of times we just can’t.

    I had the normal parent to SN parent transformation. I am fluent in both worlds. I still struggle more with being in Andrew’s world though. It wasn’t my first language.

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