Like Walking On Your Hands: Insights from a Life with Special-Needs Children

By Susan Sammer Catalano

When two of your three kids are born with vast and varying special needs, you tend to become an object of fascination for some and pity for others. Your family might be seen as a project or a cause, occasionally a threat, an inspiration or a drain, but always as some kind of anomaly. Like Walking On Your Hands is a book about raising and loving special-needs kids, the similarities and differences of this life with those who have "typical" kids only, coaching anc caring for them as they navigate their special needs while giving equal support to your typical kids, and the burdens and priviledges that come with all of this. The book is not an advice-specific "how-to," but a window into the kind of life families like ours are made to lead in hopes of providing understanding through honesty, heart and humor.

• Language: English
• Publisher: Lulu.com
• Release date: Feb 26, 2013
• ISBN: 9781300562078

Book preview

Like Walking On Your Hands: Insights from a Life with Special-Needs Children

Like Walking On Your Hands

Insights from a Life with Special-Needs Children

by Susan Sammer Catalano

For my three beautiful babies,

all of whom were born perfect.

"We have to forego the life we planned

in order to have the life that was meant for us."

– Joseph Campbell

Copyright 2013 by Susan Sammer Catalano

All rights reserved.

ISBN: 978-1-300-56207-8

INTRODUCTION: LIKE WALKING ON YOUR HANDS

My life fascinates some, which wildly fascinates me.  It’s not like I don’t know what’s completely different about what I have and how I live, but I’ll never get why it changes anyone outside of my own home.  So in an anemic effort to make sense of the obtusely unanswerable question, What’s it like having two of your three kids born with special needs?, I’ve devised an equally vague response: It’s just like walking on your hands.

Imagine having walked upright all of your life, ambling among the crowd and enjoying the freedom of moving unnoticed and choosing the way you want to go.  Actually, this isn’t the part that’s so hard to imagine... it’s what most of us experience, thankfully, and the reason some people like populous cities, concerts, and professional athletic events... the energy of a crowd is infectious.  But then something happens that renders your feet useless (maybe your bones fuse together or something?) and you’ve got to find a new means of navigating.  And fast.  So you’re still for a moment while you re-group, the crowd still moving like a stream around you, a little miffed that you’re blocking their collective flow but otherwise not noticing you much. And you know you might be flooded out if you don’t do a little quick thinking. 

Your hands are strong... why not as strong as your feet, for all they do?  Also they’re readily available, and pretty much your only option.  So you dive down and feel a little pavement on your palms, falling over continuously until you start to sense this new balance.  Then you fall less.  Eventually you balance, and stop falling at all... but you can’t walk yet.  Then you fall some more while you learn the ambling part.  And it takes years (at least it did for me), but you’re eventually walking among the upright amblers again, seemingly like you’ve always done this except for the fact that some uprighties still stare at you sometimes, as if you’re trying to draw attention to yourself.  Believe me, Pal, you think, I’d rather be buying stylish shoes instead of wearing-through work gloves.  But since those who still stare aren’t worth addressing, you just smile and stretch your middle fingers up in their direction as your now-capable hands take your next few steps...

So there’s nothing magical about doing what you have to do.  Adaptation and improvisation has gotten us all further in history than we really deserve anyway.  The only magical part might be holding your tongue when what you have to do somehow offends someone else, but thankfully that doesn’t happen much (and when it does, you just wear mittens instead of gloves so they can’t see your middle finger).  Most of the time, you’re too focused on the thing that put you on your hands anyway, which for me was my kids.  The other magical part is finding things you never knew existed, both within yourself and without in the world... things both dark and light... some of which you can fight off and some you’ll want to let in to your kids’ unique experience as well as your own.  And the quality of my kids’ unique experience will always come first, however I have to walk to maximize it for them. 

But the coolest thing about walking on your hands is that it changes your perspective --and very permanently – not only because you’ve come through the adjustment and found strength and resourcefulness you never knew you had to tap, but because you eventually have to look around yourself again after the adjustment, and the view is entirely new.  Of course it is.  You don’t meet as many eyes as you used to from here (though when you do it’s extraordinary), and sometimes you almost pity the crowd’s feet when you finally recognize the uniform rhythm they move in... especially when you remember once-knowing that same beat.  Down here, you realize the alternative.  If you hadn’t the opportunity to find your hands, would you have ever found yourself?  Stronger people I know would have regardless, but not me... I am a natural follower and easily contented.  Still, I’ve felt since I was little that others sensed something in me that I didn’t.  Well, who knows?  Maybe this is what they saw first... some small degree of strength and flexibility that I had to be forced to take up by something I loved more than myself to find.  Well, no matter.  It’s not a life-perspective I would have chosen, but now that I’ve got it I wouldn’t change it for the world.  And I will happily go through as many pairs of work gloves as it takes to always keep it.

BACKGROUND: THIS, THAT, AND THE OTHER

Part One: This

This is a very easy word.  After all, This is often what is right in front of us, and so This is usually shared.  When we talk of This, it’s mostly because This is present and a given... as in Look at this! or Walk this way or "Can you believe this?! (sometimes even with emphatic gesturing if this is either SO obvious or crazy).  Very often, This is necessarily visible, tangible, or readily apparent.  And so This" often references a shared experience or common truth.

In my own paradigm, This was Henry, born March 23rd in 1998 under no extraneous circumstances and after a normal (even lazy) pregnancy.  Basically, Henry happened without hindrance or a hitch.  I even grew an extra layer of bonus fat while pregnant to give my beautiful baby additional protection from all the relentless antigens swarming around in the outside world he would invariably find harsh enough, soon enough.  Well, that’s what a daily cup-or-so of peanut butter with the occasional apple slice will do for you.  But true-to-task, Henry was born as healthy and noisy as any baby could be after the kind of fight they all put up to stay in their comfortably-insulated environment.  And as alien look-alikes go, he couldn’t have been any cuter.  His beautiful brown eyes were so large and wide that I had to wonder whether his head had finished growing into them.  Well of course it had; his long and exhausting birth was proof enough.  Still, Henry’s were the most glazed and garbled and glassy and gorgeous eyes I’d ever seen... they had never seen light before then, but they lit up my own eyes more than anything had before.  And when the doctor finally laid him in my deflated lap and he set those beautiful buggy-browns on me, all I could manage to say was, I’ll keep him!  And as the mother of only pets to that point, this had always been my initial response of love when I felt instant attachment.  I was so love-drunk and exhausted that I never might have known how my first words about my new son sounded if it weren’t for the doctor’s response:  Very glad you feel that way, Susan.  Because we don’t have a return policy.

So This was about as this-like as any new parenthood experience could be for awhile... all the sleepless nights that feel like the worst-ever-experienced by anyone and new worries you didn’t know you could imagine (much less care about) arrived like clockwork, and the effects were equally predictable.  Henry grew – maybe a little too fast (he looked like the love-child of the Michelin Man) – otherwise, I had only to worry about the usuals. Would he sit up on-schedule? (well, if he didn’t, his body weight might be the cause).  Was he able to balance himself? (again, body weight could be blamed).  When would he attempt to walk? (well, with that incredible body weight, who knew?)  Other than earning himself the nickname Hank the Tank, my son was perfectly healthy and able, even happier than most.  There was not only no cause for complaint, but tremendous cause for celebration and for hope in the vast potential of this new life.  Henry may have only been a baby, but in almost every way we already knew that as a new member of the world he just-plain rocked!

But for as little as I had to complain about, I still found plenty.  I guess all new mothers do.  And again like most new mothers do, I thought I could pick up my old life exactly as I had left it.  (Wait... where exactly had I left it again?)

When I got lucky enough to return to my doctoral studies at the University of Tennessee that fall, I took up the schedule as I had always done, just as if it were the inevitable next-step waiting for my cue.  Fat alien babies were wonderful but never figured consciously into my career plan, largely because there wasn’t a set plan but only a vague vision in the distance of my life as an English professor.  Well, why couldn’t you go back to where you left off before?  Babies were like pets at Henry’s age and slept most of the time anyway (except when they were supposed to in the early morning), still unable to do much and so forced to be flexible.  So if the child was fed (and in Henry’s case, fed and fed again), and kept relatively dry and comfortable, there should be no reason for worry or tremendous life-altering.  At least not until they got to be teenagers... you know, unless you were wuss enough to need a full-night’s sleep or something.

So when Henry was four months old after a full summer of adjustment and discovery, I blissfully resumed the doctoral study I had started before my pregnancy.  When we were asked to report for duty as Teaching Assistants – appointed respectfully, as knights were, with the hallowed trust of the English Department – I was excited as I had ever been pre-Henry to report for academic duty (which is to say, as excited as anyone could be to get paid peanuts for the responsibility of digging deep and vast intellectual trenches in the minds of America’s youth, usually against their will).  So I thought I was ready to go, just as I had always been, just as every August had come before this one.  And then I looked around.

I had taught English at the collegiate level for a good five years at that point, both for scholarship money and as a free agent for universities I didn’t attend who needed semi-educated, starving monkeys to cover their curriculum schedule.  At that point, I had five universities under my teaching belt already, thank you very much.  But as I looked around and saw people I had been muddy with in the academic trenches – and even revered for their combat valor  – the unsaid understanding between us now seemed somehow diluted.  Where I once saw noble minds devoted to the cause, I now saw a bunch of sorry elitists too narrow in their focus to see the world outside the ivy walls.  Most of them weren’t even married, much less parents... so what really gave them the right to impart wisdom?  Sure, they’ve read a lot of books... some had even written them... and they knew how to research and process the information analytically.  But even I could do that.  And I didn’t need a black turtleneck, oversized coffee mug, or haughty attitude to do it.  And I didn’t have to live with my mother.

Okay, not everything I was thinking about my fellow scholars was necessarily fair... some of them had lives outside the academic vacuum, even personalities.  But I couldn’t help it.  I had felt a tinge of that resentment even before my alien baby was born, when I was just an adjunct-professor newlywed sharing two full pots of coffee daily with my law-student husband.  Few others I knew of in the Program were married, so they diffused stress and opened their philosophical thoughts with semi-regular nights out together at a bar, or at someone’s loft apartment smoking some illegal (though potentially medically necessary) substance that’s always too-easily found at a state university.  Lucky bastards.  I was no free bohemian like they were, but it seemed like a fine life to me then.  I wanted to smoke their stuff, keep up with their drink-load and their esoteric discussions, even wanted a tattoo.  But the most I rebelled against the establishment that embraced me as a young married teacher was when I voted Democrat.  There wasn’t much to argue about when change came as slowly as the melting of an iceberg to the people who loved me most. 

So there I sat with altered vision in that Teaching Assistants’ meeting – my first since Henry – mindset warped and completely more distracted than I had ever been before.  Teaching workshops were static enough – always fraught with untested philosophy and pedagogy and overt optimism.  Idiots.  Well, I was one of those idiots until Henry rescued me a few months earlier, wasn’t I (well, except for the pot-smoking)... and didn’t I even love it?  Damn the course of life.  It seemed the more clear my purpose was becoming, the more confused it left me for the way I had thought it should