Saturday, April 6, 2013

Autism Awareness Month 4/6 - Heather - Friend

When Jordan posted the request for submissions, I must admit I balked at first.  Jordan and I go way back.  We were friends in high school and through Facebook reconnected that friendship and soon found a kinship.  Both of our sons, both our oldest, have been diagnosed with autism.  Devin is bit older than Jack, but it doesn’t change a whole lot.  When we talk, we see each other nod in agreement and laugh at the similarities.  Our hearts tug when one family is going through a trial.

Like I said though, I had to think about it.  I’ve often considered writing a blog or book regarding the subject, but unlike Jordan, have never really found the time to sit down and put it into words.  Doubts filled my head; will I have anything to say that is unique?  Would anyone want to read what I had to say?

The idea has nagged at me though, so here I sit, typing away, trying to form the thoughts into something cohesive.

What is Autism? 

Imagine a world; too bright, too noisy, too smelly, too itchy to comprehend.
The sun hurts your eyes.  The lights flicker, hum and pulsate making you nauseous. 
You can hear everything.  Every noise EVER but can still decipher background conversations.  Everything sounds like a fire truck siren wailing right by you.  There is no volume control in your world.
Your nose assaults your senses, stomach, and mind at every turn. You find it hard to taste, eat or chew because you can feel every minute textural change.

Tags scratch your neck. Graphics on t-shirts feel gummy.  Jeans itch. Clothes in general are uncomfortable and you would rather be in something cuddly or nothing at all.

People who are uninformed treat you like your mind is incapacitated, when in fact you’re probably more intelligent than they are.  Most likely you have some kind of eidetic memory and memorization stems from visual stimuli.  Once you see something (a picture, a calendar, a book, a puzzle) you see it forever in its exact format in your mind’s eye.

Can you imagine that?  I mean if you try REALLY hard do you think you can?

Now with all that going on, you’re expected to fit into the world’s chaos while your mind screams. Pay attention. Make friends.  Forget all that overstimulation assaulting your senses.
And you wonder why our kids are prone to meltdowns…

What does Autism mean to me?

Simply, gut-wrenching heartache and indescribable joy…

My son Devin just turned 11.  He is what is specified as a high functioning Autistic child with Asperger type tendencies. He wasn’t always that way. He spoke at 2, engaged in eye contact, was happy and seemingly neuro-typical.  Or so I thought being a first time mom.  Having two other kids now, hindsight being what it is, I know now that something was always super special about my guy.

D wasn’t diagnosed until 4 and a half.  He didn’t show signs until 2 and a half. For two years I watched my only child regress into a world of his own.  No one knew what was wrong.  No one could help.  He stopped speaking, sharing eye contact, and generally interacting with me and the world around him. He began flapping his arms and screaming uncontrollably.  Wimbledon tennis and the ceiling fan were the only things that brought him solace.  I felt frantic and alone.  I knew something was wrong but couldn’t get a diagnosis for anything.
Developmentally delayed.  Speech Impaired.  These terms were tossed around by my pediatrician and well-meaning friends/family.
One suggestion was to read iambic pentameter to him.  It would help with the speech delay due to the cantor in the prose.  Mother Goose, Dr. Seuss, and Shakespeare became a staple.  I can still read “The Lorax” from memory. Every day and every night.  If he could speak he would’ve been the only kid on the block reciting sonnets.

Socialize him more was another suggestion.  So I took him to parks, put him in daycare for half days, instigated more play dates.  All with disastrous results.  Biting, kicking, screaming, and crying were all a part of the repertoire.  I’ve lost count at how many daycares asked us not to return.  I don’t know how many times I would lay there at night, trying to get him to sleep and we would cry together.  Both of us feeling completely alone in a world we shared solely together.

This went on for a two years and I have never felt so helpless.

In 2006 my 2nd child, Ayla was born.  4 days after she was born, Devin was diagnosed.  I remember that day well.  My newborn daughter in her car seat, sleeping peacefully by my feet, me hormonal, D stimming on a light switch.  All while a doctor specializing in ADHD broke the news to me.  Time slowed down. I heard the fan blades moving above me, the lights flickering on an off as I stared at my sweet precious boy.  What kind of life would he have?  What kind of life would I have?  What happens when I die?  What will happen to him?  Thoughts darted through my mind as I had my own inner meltdown and I began to realize.  To understand.

I know it’s unoriginal and I find that it’s a common theme.  We as parents know EXACTLY where we were, what was going on, even the smell in the damn room when we were told our child was unlike other kids.

Strangely, I didn’t take the news as devastation.  I had an answer!  Finally!  I swung into action with a vehemence and gusto I’d never applied to anything in my life thus far. I started reading on the subject and haven’t stopped.  I set up assessments through our Regional Facility (4 different times in fact) only to be shot down and told D didn’t qualify for services.  He was too high functioning.  He wasn’t speaking and was stimming ALL THE TIME…but still considered too high functioning for state aide. HOW? Couldn’t they see my child was miserable?  Backpedaling by the minute into his own world where he felt safe?  Building his walls so high and so thick that I’d never be able to break him back out?  Didn’t matter.

Alone again.

Ok fine. I went a different route.  Private pay.  Got him into OT, PT, ABA, and Speech Therapy.  Paid a small fortune to provide these services out of my pocket for my child.  Accumulated a library’s worth of knowledge on the subject and begun to educate myself.  No one was going to say my child was less.  No one was going to deny him a chance due to his disability.  No one was going to stand in our way to help him succeed.  I would break down his walls, pull him out, and see the light in my boy’s eyes again if it was last thing I did.

I wish I could tell you the years brought sunshine and roses.  That the skies parted, angels sang, and all of a sudden things clicked and D magically began to do better.  But I can’t.  Any parent of a child with Autism knows the drill and has run the gambit of diets, strategies, and trials.  Each of us knows it’s a hit, miss, or month’s long arduous adventure for our kid to finally quit fighting and latch on to something.
I can say now, 7 years later, we are all still learning.  But we are all starting to see some real progress.  There is hope.

Structure, schedules, and continuity have helped.  A safe place to fall without judgment, with unconditional love, and with a lot of humor helps in ways that I cannot describe.

 We recognize that if he perseverates on something life changing he’s trying to work it out.  It may take 2 hours, 2 weeks, or 2 months, but he will retrain, wrap his brain around it and understand as much as anyone can. 

 We have learned to find joy in the littlest things. That the tiniest comment on our part will cause an obsession of epic proportions.  Cute and sweet and first, it takes saint-like parenting to act surprised about a canal that you see every day, that has been pointed out every day, for the last year, and still have it carry the same joy as it does for him.

We have tried to separate.  To give our NT girls the attention they so desperately need and sometimes don’t always get. To not treat the girls like our son and vice versa. Try to go beyond loving each for their individuality but for their uniqueness as well.  To not freak out because the baby walks on her toes so OMG that must mean autism!!  To take a deep breath and realize that our 6 year old daughter has Autism-like meltdowns because she is being raised with an older brother who has Autism.  Children mirror their siblings and it’s nothing more.  Maddening and difficult yes, but (deep breath) this too shall pass.

With all the ups and downs, we have learned to celebrate. No accomplishment is too small. 7 years later, D is a happy, talkative kid who loves history, art, and music.  He loves hugs and understands sarcasm.  He mainstreams in a NT 5th grade classroom but still draws on ASD services through his school.  He is the sweetest, gentlest boy I know who tries his damnedest every day.

So what does Autism mean to me?  A lot of hard work.  A lot of sleepless nights.  And a lot of worrying and crying. 

But also has given us a huge payoff. Devin.  Every day he makes me proud.  Every day I see him try and struggle and not let this “disability” get him down.  I can’t imagine my son any other way than what he is and wouldn’t want him to change for anything in this world. 

He gives me hope, makes me strive to be better in everything I do, and to realize how damn easy I have it.

Simply, Devin is my heart, my joy, and my hero.

Good job son.  Every day.  Good job.

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