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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