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By Brenda Kosky-Deskin

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An Open Letter To Jimmy’s Neighbors About Autism

April 1, 2013   Comments (0)

Advocacy & Awareness Advocacy Advice

Getting To The Heart Of Autism Awareness

Dear Jimmy's Neighbors,

I received the most distressing message via Facebook last night from a man by the name of Jimmy. While Jimmy is in actuality a stranger to me, I feel that in many ways I know him, in that we share a very special common bond. You see, like me, Jimmy is an Autism Parent. And like many Autism Parents, Jimmy and his wife don't get to experience many of the things that most other parents of non-Autistic children often take for granted... something as special as hearing your child utter the words "I love you" for the first time, or something as basic as a good night's sleep.

In his letter, Jimmy describes that all too familiar scenario of his son "waking up in the middle of the night full of energy, hopping around his room and giggling and laughing at the top of his lungs." Sleeping problems are common among autistic individuals so although I could immediately empathize with Jimmy's situation, I was not at all surprised by it.

Jimmy's letter continued, but not once did he mention the many other difficulties that are so commonly associated with having a child on the Autism Spectrum... the financial devastation brought on by the need for therapy that the majority cannot afford; the profound sense of loss and grief a parent experiences upon discovering that their child will most likely never marry, hold down a job or establish any meaningful friendships for the rest of his life; that individuals on the Autism Spectrum are three times more likely to be bullied than their non-Autistic peers; that children with Autism become adults with Autism who often have no one to care for them when their aging parents cannot or are no longer alive.

So why was Jimmy writing me? I was so saddened when I discovered that it was about problems he was having with his neighbors. It seems that some of you who reside in the same apartment building as Jimmy and his family have not been as understanding as I think you could be about the plight of Jimmy's son. In fact, he states that on two occasions someone in your building has filed a report with the New York City Administration for Children's Services.

Now let me be absolutely clear here. I don't know Jimmy and I don't know any of you. If indeed, you genuinely suspected that Jimmy and his wife were in some way compromising the safety and wellbeing of their son, then I support your actions 100 per cent. However, from what Jimmy has told me, on both occasions the A.C.S. found nothing wrong and closed the investigations. Could what Jimmy suspects really be true? Would someone really be willing to have a child taken away from his loving and caring parents, all for a night's sleep?

I am doing my best to remain objective here. I know all too well what it's like to be so sleep deprived that it hurts. But I also know that this family and their child need and deserve better. I know that it sounds cliché, but we parents didn't choose the Autism Life. It chose us. And with the prevalence of this dreaded disorder continuing to skyrocket, it is choosing more and more families with every passing day. And instead of helping, you are rubbing salt in the wound, a wound that is already very deep and very painful.

April is Autism Awareness Month. Let's all use it as an opportunity to learn and grow. Your story so very well exemplifies how Autism is so much greater than every individual family's problem. It is society's problem and everyone is impacted.

I understand how miserable it can be to have your sleep interupted so frequently and I know how it can make the best of us act in ways we would not otherwise behave. But I implore you to rethink your approach. Instead of finding ways to get rid of Jimmy's family, embrace them. Educate yourself about Autism. Donate to Autism research. Ask how you can help. Bring over a meal or offer to watch their son so they can grab a nap or run some errands. Brainstorm together about how you can perhaps assist them in finding a solution that can help everyone. Maybe it's soundproofing their child's bedroom. Perhaps it's all chipping in to provide the child with an iPad if his family cannot afford one, so he can have something to engage him quietly when he is uable to sleep. Above all else, be understanding.

And if all of that just doesn't sound like it's within your reach, consider moving, because as difficult and stressful as it would be for you to move, that stress and strain would be exponentially greater for Jimmy and his family as individuals on the Autism Spectrum find change to be exceptionally difficult to deal with and in some cases, even intolerable.

However, should you choose this latter option of moving, be forewarned... With statistics like the ones just released by the Center for Disease Control stating that 1 out of every 50 school children has Autism, you might very well end up with another Autistic neighbor.


April 1, 2013   Comments (0)

Advocacy & Awareness Advocacy Advice

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