World Autism Awareness Day

Today is April 2nd, otherwise known as the seventh World Autism Awareness Day.  There will be people “lighting it up blue,” people boycotting Autism Speaks by not “lighting it up blue,” and many beautifully crafted posts on blogs and websites talking about autism, autism awareness, and yes, autism celebration. 

In my house, at least in the early hours of the morning with my two autistic boys, it will be Wednesday.

Eventually, my sons’ buses will come to carry them away to their beloved schools and I will have time to consume my own beloved Coke 90 and sugar-free chocolate (I know, but every little bit helps, right?).  I will have a few minutes to contemplate what I like to call the “state of autism affairs” worldwide, and equally importantly, the “state of autism affairs” in my own home, and what I’ll be writing about.

In truth, every year I like to have a theme for my posts in April.  Last year I celebrated by writing about exceptional autism advocates in my community. This year, as I approach the ten year anniversary of my eldest son’s diagnosis, I’d like to take a different approach.

I’m going to celebrate the hell out of my kids’ accomplishments.  And in doing so, I hope to inspire and offer hope to anyone just coming to terms with their child’s autism spectrum diagnosis.

Ten years ago this fall a kindly developmental pediatrician gave Justin the diagnosis of Pervasive Developmental Disorder (PDD), a label I knew in my soul was just the precursor to the autism diagnosis I was sure would come.  Four years later I sat in my living room as my Early Intervention provider told me my youngest son Zachary, following a series of back-to-back illnesses, had lost six months to a year in all areas of developmental growth in a matter of weeks.

The latter reckoning was particularly difficult to deal with as Zach had appeared to develop typically for eighteen months, plus Justin was going through a particularly challenging time as well.  I well remember sitting on my couch in my living room, wondering how the hell I was going to continue a hellish attempt at potty training my eldest child while simultaneously trying to help my youngest retrieve the glorious words he’d lost, not to mention what appeared to be the very light in his soul.  I recall thinking it was all too much, that my dream of how my family would be was irrevocably shattered.

The dream, by the way, was simply that my boys would be safe, productive, and happy.

On this blog I will never promise anyone their lives and those of their autistic children will definitely get better, as I don’t know all of my readers’ particular situations, and honestly, better is a relative term. 

I will say this however. 

I have two children with autism.  One is severely affected, and will require life-time care.  One is considered on the milder end of the spectrum, and one day may well be president.  In their early years both suffered, truly suffered from autism. 

Now, for the most part, I can honestly say they don’t.

We still go through difficult periods with each child.  At times Justin can be caught in a vicious OCD cycle, difficult to reach, almost impossible to placate.  His long-buried aggressive tendencies can rear their ugly head despite the behavioral techniques we try, rendering our family life challenging at best.  Zach goes through periods where he truly struggles to focus both in school and out, and his impulsivity can stretch us thin. I’m not saying it’s a walk in the park here by any means.

Again, I will never promise any of my readers things will get better, although I fervently hope all families can reach the sanctuary of acceptance, and yes, at times celebration, that this family has.

But truly, after years of therapy, acceptance, maturation, and simply love, both of my boys are predominantly happy.  Both thrive even working through, and sometimes because of, the lens of their respective diagnoses. 

Both, in their own respective ways, tell me frequently that they love their lives.

And to me my friends, that is everything.

Jade Greene April 03, 2014 at 12:56 PM
We are producing a play at The Grange Playhouse in Howell this month that was written by and stars a young man with autism. The play is a coming of age story with a twist: our hero is autistic. It's inspiring to watch Brian Lodato, a fine actor, move through his first attempt at playwriting in fine style. Thplay will be presented Fridays and Saturdays April 11, 12, 18, and 19 @ 8 pm and Sunday April 13 @ 3 pm. Call or text for more info : (732)768-2709.
Bill Erikson April 03, 2014 at 01:15 PM
genesko, my heart goes out to you. I've done most of this on my own. Until someone actually has a child with a disability, they will never truly understand. I can respect that. Had my son not had the stroke, and the severity of the Autism did not subside, I don't know how I would of made it. CHOP Neurological never could explain how the severity subsided. Just Luck. A trade off if you will. My Son drives, yes, but sometimes his emotions overwhelm him. He has learned how to recognize that, and he knows to call me first. But the Joys are great. He can read other's clues for social interaction, and he is always improving there. But again, a lot of work at home was required. I know depending on the severity of the situation, it may never improve. Regarding the group homes, you are right. 20 year waiting list. I'm reminded of my Late Dad's best friend who's oldest son is Autistic. He is now about 57, living in a home. He was lucky. His parents were very upper middle class. They were able to afford what was needed and was able to see to it. Unfortunately today, many of us cannot earn the incomes of our parents with the health benefits that they had. The best advice I can give you, which I am certain that you know, is to keep your children close. Raise them to appreciate and love each other. So as we go to the great beyond, we may hope our disabled children will still be loved and looked after by their siblings. A burden their brother's and sisters never asked for. But a love and appreciation of life and for life, that perhaps most in our country today seem to lack.
Theresa White April 04, 2014 at 12:38 AM
Yvonne April 04, 2014 at 07:48 AM
You continue to shine your special blue light on all with whom you encounter. You've raised 2 amazing sons with love and light. I love that you continue to focus on the good and the positive. Shine On Kimberlee!


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