“The Light of My Life:The Joys of Raising a Special Needs Child”

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Joshua Kimerling

My son Julian Austin Kimerling was born on June 17th 2011.  Pretty normal pregnancy for my wife Priscilla. No major concerns that would lead us to believe there could be issues down the line. During the birth, I held Priscilla’s hand with a blue curtain safely separating my eyeballs from the gnarly scene that is a caesarian section.  I remember looking at my beautiful wife who was high on hardcore hospital drugs, a giggling madwoman while I was sobbing like a grounded 7 year old.  Two emotional wrecks.  When the doc emerged with my baby boy, I was full on hysterical crying. Julian’s raspy newborn yells might as well have been angel music straight from heaven.  It was the happiest day of my life.

For you to fully understand my emotional state, you should probably know that I was adopted.  I never met or even knew who my biological parents were and struggled at times to find a connection within my immediate family.  So this noisy little chicken nugget who came out of my wife’s body is my only actual known blood relative.  A little fact that ratchets up the emotional factor times a thousand.

The first few months of raising Julian were bliss.  He was a happy healthy little dude who ate and pooped like a tiny linebacker. After month 3, we put him in daycare and it wasn’t too long after that the concerns started.  Julian and another baby were being cared for by a friend of Priscilla’s.  We noticed quickly the other baby was crawling, moving around, crunching on cheerios while Julian could barely sit up.  He wasn’t crawling, holding toys or chewing.  After a couple more months, Priscilla’s friend could no longer care for him because it was obvious he needed more qualified care.  This was when we went on a Doctor appointment marathon. Over the next 3 years we saw every pediatric neurologist from NY to Boston and in between. Julian had EKG’s, X-Rays, CT scans and genetic testing.  To this day we haven’t had a single test come back conclusive.

So just to put something on paper, Julian was ‘diagnosed’ with Global Developmental Delay Syndrome as well as Hypotonia (low muscle tone).  GDD is a general term that means they don’t know what’s wrong with him (we may never know) except that he’s not developing at the pace of his peers.  Hypotonia is another general observation that means his muscles are weak, affecting his ability move and support himself.  Julian was also observed as having symptoms of Autism – stimming, staring spells, severely decreased motor function – and mild Cerebral Palsy – Low tone, poor reflexes, balance, delayed milestones… All this being said, there was behavior in Julian early on, where doctors just couldn’t conclusively diagnose him with either Autism or CP.  For instance, he connected with adults, didn’t have any major behavioral issues, he always ate like a champ (soft food since he couldn’t chew) and just showed an overall disposition contrary to those disorders.

Fine.. He still needed a ton of help so by 9 months we entered him into Birth to Three, an ‘early intervention’ therapy program that would help our little champ get on track.   It’s also where we met our godsend Isabel, a no nonsense physical therapist who’s only mission in life is to get disabled children to reach their max potential.  Unfortunately, once Julian turned 3, his birth to 3 services ended so that meant Isabel could no longer see him.  We had to make a private arrangement and she we pay for her to make house visits every other Saturday.

We also found a daycare that would work with Julian’s special needs, another godsend.. especially since most day-cares we visited would not.  He’s been there since 9 months old and now splits his time between a specialized school program.

As a result of Julian’s therapy, he started walking at 2 and half yrs.  I can honestly tell you there were times especially after he turned 2 that I wondered if he would ever walk.  However, with therapy and determination, Julian continues to get stronger.  It could be something as simple as getting down a step, putting his cup in the sink, opening a door or figuring out a new toy.  Any action we can pinpoint cognitive function is everything.  Even if I never see Julian hit a home run or score a touchdown, the feeling I get from watching him tackle another milestone is breathtaking.

In all the joy we experience we do have to acknowledge certain realities.. Julian is going to be 5 years old in June (2016).  He hasn’t spoken his first words yet, he can’t dress himself or use the toilet (still in diapers), he doesn’t chew crunchy foods, he can’t run, walk a flight of stairs unassisted and just recently was able to get up off the floor without help.  His motor functions are extremely limited and he doesn’t engage with toys or puzzles the same way other kids do.  I’d say the best way to describe it is it’s like raising a 1-year old baby for the past 5 years.  Does the occasional reality check freak us the hell out?  Perhaps. It’s impossible not to think about it, but I assure you it’s less than .01% of the time.

To put it in perspective, I remember having a conversation with a father whose daughter has similar developmental issues to Julian.. We were watching our kids from a distance and actually had a laugh about the expectations parents in general place on their kids.. Now mind you this guy is a 6’3” athlete carved out of rock and his wife looks like Miss America.  I’m sure at some point they thought they were going to have some little super kids.  I know Priscilla and I used to joke about the ‘elite athletes’ we were going to raise.  But you know what?  The minute you realize it’s not going down like that, you could care less.  You’re too busy loving and ADMIRING your little soldier who shows you what strength and determination really is. Everyone else has it EASY.

It’s a pretty basic instinct that kicks in when you realize your child is going to face challenges.  You get the support system in place then it’s all about execution.  And although I am the one writing this piece, it’s my wife who deserves almost all the credit for finding that support system.. the Doctors, therapies, daycare, schooling, lawyers (if you have a special needs child, you’ll need one).  She organized it all and while I try my best to be his rock at home, Priscilla is his advocate in the streets – she’s amazing and what would seem like a hardship has brought us extremely close and we will NEVER let this kid down.  Ever.

 

As parents we try not to dwell on what we can’t control so we just enjoy parenthood like everyone else. Every day we come home or pick Julian up from school, he reacts like he hasn’t seen us in 6 weeks. It’s a reception that never gets old.  He’s a riot, constantly screwing with us in his own way.  He’s full of personality, walking around like a little boss in outfits his mom carefully curated like he’s going to be in the next baby GQ mag.  He’s super happy and loving and his classmates adore him. His relationships with his therapists are hilarious.  He has a little con game where he tries to get out of working by hugging them. We always have to warn the new ones about the hugging thing because when he’s hugging, he’s not working and lets be real who can resist a hug from a frikkin adorable 4 year old?

No one. That’s who.

– Joshua Kimerling is an apparel designer in New York City and owner of cousinsbrand.com

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parents and special needs

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