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Parenting/Stress

The stressors of having a special need’s child while they may appear magnified are merely copycats of the stress related to having any child, neurotypical , typical or otherwise challenged.  In November, 2009 there was an article in www.disabilityscoop.com comparing autism moms’ stress to combat soldiers which I vaguely agreed with at the time, but more so a few years later.  5^th grade and I was trying to make sense of Jazz’s sudden onset of throwing up on Sunday night, vomit rolling out like that of a newborn as opposed to exorcist projectile sticky goop.  For three months this went on, until she found a way to share what was making her so upset & nervous.  No doctors, no anxiety meds, no nothing this usually magic mama said could ease her nerves so that puking became a norm which set us on edge as we were constantly waiting for an eruption; it could happen anyplace, anytime, with or without a toilet and waste basket present.  Shrill shrieks and some doe-eyed pleading glance would be her only warning.  So when they say it takes a toll on the parents of a kid with autism and well-meaning folks say “God sure knew what she was doing when she gave Jasmynn to you two; I’m not sure anyone else would have handled this so well.”  I smile quietly. 

First off, I doubt that God has time to hand pick parents given all of the other really tough issues in this world.  Secondly, had her father and I  not been old and tired out grownups, let’s say I’d been gifted Jazz as my first child at 17, I’m convinced that things would have gone badly and I wouldn’t be getting any Grammy for my performance.  But most importantly, I’d say having kids takes a monumental toll on anyone who ventures down that road.

Parenting a special needs’ child  or not, the challenges are the same with one exception…most kids expect  to fly the coop after graduating high school or college and begin their journey of finding their own life paths.  Even if she could sprout wings and leap the fence, our darling will depend on us, or someone like us, a caregiver, a job coach to model how to do simple employability tasks, in all honesty, longer than most kids; quite possibly, she is ours to eternity... And that’s our eternity. Then God-willing she becomes her sister’s dependent until one of them wears out & goes into that long, dark sleep.

That’s unflinchingly, gut-wrenchingly the hardest part about having Jazz.  There is so much out of our hands regarding her future.  We struggle with two questions, “Who will love our girl, the way we do, given the forever Herculean task of helping her navigate this world?” and finally, “How can I expect her sister(s) to alter their lives for a child they did not bargain for?”  When I find the answers, I’ll gladly share, but don’t hold your breath.   The unknown is what keeps me awake while most of the world slumbers.  It is the skeleton in my closet, rattling its chain, forcing me to puzzle and work through nagging fears.  They say that those on the autism spectrum cling to routine, constancy, and are thrown off by the abstract/unknown.  I guess I have a bit of autism in me then, for not being able to control that one tiny piece of her reality throws me to the wall like straight-line winds. 

So yes, I absolutely agree that having kids is a stressor. You have to stay 3 steps ahead of them at any moment.  You have to expect to stop traffic (and pray the driver is not texting so she/her will see your frantic flailing & hear your wailing lunatic mama shrieks) when your kid bolts for the street.  You face boundless nights of whimpering or perverse laughter which makes no sense as you calmly return them to their own bed/crib.  You become a magician in the kitchen, hiding the broccoli in plain sight, cajoling them to eat something, anything besides chicken nuggets and quartered grapes. Persnickety appetites and those strong willed kiddoes who expect “sameness” can honestly survive on three foods for years, which of course brings with it gut issues & toileting trauma. 

And the kicker, the clincher, the really BIG factor which rocks our worlds when we become parents is the transformation of our spousal relationship.  What used to be “ME & You” is now “WE 3 OR 4 OR 5 PLUS” so that date nights (exactly what does that look like, I wonder?) can become a hazy memory.    With Elmo taking center stage at the Archer house, and a thousand nursery rhymes memorized I find myself humming or singing along to the tunes, but I really don’t feel bad because just this past weekend I observed that my 4^th daughter also knows all of the words to “Wheels on the Bus” and sings along as she cooks, though her twins have run off to other distractions.  It is never-ending:  trying to juggle work, parenthood, partner in a healthy marriage with the constant needs of the child. Who bargained for any of this you might ask yourself?  But then those nighttime kisses from a booger-crusted, saliva slewing mouth erase any doubts we may have.

We are always guessing as a parent; conscious that our every move is going to impact our children.  Mistakes will be made.  Battles will be fought over Mac n’ cheese.  Our alone times, the what-used-to-be-us-time will be sidelined for some evening when exhaustion has not won and our eyes are wide-open.  Or you can alter what your expectations were. You compromise.  In my age old wisdoms, I’ve learned to pop a Sesame Street DVD in, but let me tell you, it’s seriously  a romance killer to hear “la, la, la, la, Elmo’s world”  as background ambiance.  We are all shell-shocked in this thing called parenting.  It’s not combat stress related.  I would never dare to include myself or my husband in such an exalted arena.  I carry worries not weapons.  I am selective in the battles I choose where Jazz will ALWAYS be the victor because her determination knows no end.  And her elephantine memory is long.  Keeping the peace at all costs, making sure her world runs smoothly, is how I get through the really hard days.  You’d be amazed at how the world looks after a bubble bath and a glass of Merlot so long as you’ve got a partner who lets Calgon take you away.  It seems that I often forget to mention that key component, but  I’m blessed with a wonderful husband.

Falling in & out of love

As mom to 5 glorious daughters I can say that I never knew love before they arrived.  Even at the very surprising age of 16, when I discovered I would be getting shotgun married within 6 weeks, and I delivered my firstborn while still in high school, there was such joy mingled with pain. And two very long and impatient years passed by before my next darling drew her breathe; I discovered early on that sometimes it is the thing you most long for that is kept at bay & for a  divine purpose not known to you. Then babies 3 & 4 came amidst trying to run a family orchard, pie baking by the thousands, crust crimping & flour-faced even in my dreams, how did the years run away so quickly?  Those older siblings left home, dug roots at college and there I stood with such an ‘empty-nest heartache’ that I can’t  begin to put that loss into words.  A mile long road of mistakes, changes, & two college degrees later I finally found myself alone.  My mama said, “you need to get a hobby” while I pined for the every-other-week visits of my girls who were having dad time.  I recall vividly saying to her, “I could be a mom forever. It’s what I’m good at. ”  (Be careful what you wish for, comes to mind.)

Fast forward, sitting at the breakfast table, 2 daughters present and my future husband, (yet we didn’t know that was what life had in store) getting  lectured by my 4^th wise child, informing me about methods of birth control and how many life spermatozoa are in a tsp. of well, you know. 9 months later, at age 41, their baby sister, my girlchild #5 entered the world as the midnight hour chimed.  Her birth was a blessing as all of my daughters were present for the labor as well as my mother, who’d birthed 7 kids herself but  never once saw a delivery from beneath the cloud of ether. A proud, nervous Dad stood by also, sturdy at the head of the bed, amazed at my fortitude and ability to withstand pain without screaming like a banshee.  Mom and the girls were trapped at the business end of the bed as the doctor refused to let them move once he’d arrived. They still speak today of that being the best form ever of birth control, though some 16 years later, they too have gotten past the horror & added 7 gorgeous grandchildren to our lives.

Jasmynn, all 8 ½ lbs. of glorious squalling red-wrinkled baby brought an elation to my world which I had been missing.  There is nothing wrong with a mom being smitten by her newborn. It’s expected. It’s normal.  So for 3 years I walked lightly. Danced is more like it with Jasmynn while my other daughters moved forward with making their own ways in life.  Yes, something was definitely “off” but who could notice between the xx’s and oo’s she brought to each day. Things were not going according to the milestone schedules I opted to ignore at each well-childcare visit to the pediatrician, but no mention of anything awry other than “she has too many mama’s at her beck and call.” She crawled late, walked even later.  Language didn’t come or it was shrieking, garbled attempts to make noise. She was clearly different, but I was not ready to see it just yet. So when that mind-blowing diagnosis came it was like something died inside.  Don’t get me wrong; I still loved her, but the pure joy of every breath came with a price and a weight I found myself buried beneath.

Getting an autism diagnosis is absolutely not the end of the world. “Things can always be worse.”  It’s not like she had a life-threatening disease. There were kids dying every day. But try telling the mama  who sets the sun and moon by her child’s smile that piece of advice.  It’s just better not to say anything at all and let each of us process the information at our pace, in our way. For if I’ve learned anything in all of this, it takes time to sift through the emotions, the loss, and letting go of the “what might have beens” we have for our children.  But only a fellow mama or daddy on this autism journey can understand that.