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April 18, 2014 / 18 Nisan, 5774
At a Glance

Posts Tagged ‘asperger’s syndrome’

Thank You, Aryeh United

Tuesday, September 24th, 2013

An incredible thing happened this summer to my 15 year old son, Joey. Unbelievably, he went white water rafting for the very first time. Now, you’re probably thinking, “What’s the big deal? Plenty of kids go white water rafting – nothing incredible or unbelievable about it.” Let me explain…

Joey has a diagnosis of Asperger’s Syndrome, a high-functioning form of Autism, which, along with other deficits, can affect an individual’s sensory integration abilities resulting in a range of sensory sensitivities. To put it simply, Joey hates getting water splashed in his face or the sensation of wet clothing. When he was younger, one drop of liquid on his shirt meant its immediate removal (public or private domains), regardless of whether another one was available to replace it.

Today, he strongly (and I emphasize, STRONGLY) prefers bathing over showering, to avoid the spray of water in his face. So, now that you know Joey’s relationship with water (splashed, sprayed, sprinkled, or otherwise), you can understand the significance of his first rafting experience (and might I add, a Facebook picture confirming a grin from ear to ear). It wasn’t just BIG. It was HUGE! For this ‘first’ and numerous other ‘firsts’, our deep appreciation and thanks goes to Aryeh United.

Last January, I received an e-mail describing this brand new travel camp with the goal of integrating high-functioning special needs teens with typical teens for a 10 day adventure to America’s South. I was thrilled. I was ecstatic. I would have cartwheeled across my living room if I could. What a potentially perfect opportunity for Joey! Our human GPS who loves geography, maps and anything mass transit, to actually GO to the places he constantly reads about ….. this was nothing short of amazing!

I contacted Yoni Glatt immediately and a short time afterwards, Joey was interviewed and accepted. I can tell you that for the next 6 months (the trip was at the end of August) all Joey would talk about was travel camp! He took out from the library every travel book he could get his hands on about the Smokey Mountains, Atlanta, Savannah, Orlando and other areas of the South. He studied maps, he devised travel routes (he became close buddies with the bus driver), he reviewed traffic patterns of the major cities they would be travelling through and personally rated all the attractions they would be visiting.

Finally, Sunday August 17th arrived and the adventure began. We dropped off Joey at Newark airport with the Aryeh United group. Yoni and his incredible staff greeted us warmly and we could tell that Joey would be in patient, competent, sensitive and professional hands. For the next 10 days, my husband and I followed the group via Facebook – pictures of Joey experiencing his ‘firsts’: white water rafting (with the big smile!), horseback riding, water tubing (Yes! More water!), sharing a hotel room with people he barely knew, adapting, adjusting and modifying his behavior or expectations in novel situations (with some guidance from the adults) and most importantly, being afforded the opportunity to travel with his peers in a setting that created a sense of normalcy for a teen whose life is often far from it. Sure there were some ‘bumps’ along the way. But any issues that arose, were handled by Yoni & Staff with compassion and the utmost understanding and professionalism.

Joey is still raving about his trip (to anyone within earshot) and is already suggesting ( or should I say, strongly recommending) what Aryeh United’s travel plans ought to be for next summer (expect an e-mail, Yoni!) I cannot express in words what it means to be able to have your special needs child experience what is readily possible for a typical child but next to impossible for your own. For Joey, Aryeh United has made the impossible possible. I thank you for your vision and unwavering determination in getting this trip off the ground (literally). And now that you are up and running, don’t stop…you’ve got a great thing going. Besides, Joey’s got his bag packed and ready to go….

Annie Schneider
West Hempstead, NY

Taking the Words from my Mouth (Poem)

Wednesday, January 2nd, 2013

Taking the words from my mouth,
Twisting them, stretching them, turning them round and round,
Negating their true meaning, as it was meant to be heard,
You hear what you want without really listening.

Although I squeak and stutter when I have to speak,
And I get so nervous, confused, and completely terrified to say the wrong thing,
One wrong word can alienate others, and make them stay away,
One ill placed word can alter completely what I meant to say.

Sometimes when I come near them,
People turn around and walk the other way,
Never speaking, never caring just how much joy
Hello would bring me, how much light it would bring to my life.

Every time I’m around others,
The need to monitor words, expressions, the language of the body
A conscious effort, a constant analyzing of others,
Prevents me from feeling comfortable, stops me from ever relaxing.

I would give so much, just to know, just to feel
What it would be like, just once in a lifetime,
Once, and only once for an hour
To be able to see as others see, learn as others learn, hear as others hear
The in between the lines of any given conversation.
Being me is like a scientist who can’t experiment,
A mathematician who cannot count,
An author who cannot write,
A teacher unable to teach,
A competitive runner being unable to use his feet.

Everything I want with all my heart,
Falls into the space of those things I miss,
The mannerisms, nuances, facial expressions, body language,
When talking to others, teachers, bosses, friends, parents of students,
All these things others take for granted, I practice, I sweat over,
Til I no longer feel incapable, I rehearse my lines as if I have a role to play,
This is my life, this is why I feel so disconnected, as if an observer, an outsider.

This is a description of what it feels like to be me, a girl with Asperger’s Syndrome,
Every conversation, every word thought over,
Analyzed under the finest microscope,
Before they, words, are spoken, uttered aloud,
Sometimes, mostly never, see the light of day,
Because its too late,
The time has passed to say them,
Their usefulness expired, as if never needed at all,
Always, forever, missing the boat,
Only ready to sail further when the boat’s 10 miles ahead,
Docked at new pier,
Ready to go to a new destination.

Forever on the outside looking in,
Never on the fast track,
Always slow, never have an in,
Feels like a piece is missing,
As if I am a puzzle, missing a piece,
A boat with no sail,
A snail without shell,
A butterfly with no wings;
Forever longing for the missing part of me
To take its place,
To be on the inside looking out with a smile,
To look out over the water and know that this time,
The boat and I will arrive together at a new point; in harmony at last.

Always wondering if what I see and interpret is right,
The emotions, signaled through a look, a motion of the body,
For those missing all these little signs, considered an insignificant skill by most,
For those without the ability, to discern, to differentiate,
Between one look and the next,
One motion from the other,
A challenge, a war waged, a battle ensues
Constantly, consciously taking note of every reaction, translating;
Working so hard to follow, to give the illusion, of sameness, belonging.

Wanting to share for the first time a genuine reaction to a joke,
Ironic statement, contribute a comment, observation,
Without missing the point is the opposite than its literal meaning,
Because of seeing one dimensional instead of three,
Thinking of it as flat not round,
Circle instead of sphere,
Imagining your emotions crumbling inside,
wanting to cry, as you once again realize-
You have missed the true meaning,
Getting away, tears streaming, truly defeated:
The feelings, you know once again, how much was overlooked,
How little you truly know about it all,
Life, that is, the way others are, the way others feel, conveyed
By the nonverbal aspects, the things people like me can’t seem to observe,
People like me miss the obvious to others,
In plain sight to see, but to have no clue of the how, the why,

It’s heartbreaking to know how simple others find it,
This skill that gives everyone, but people like me the ability to function,
To understand the whole of a conversation, read between the lines,
Sometimes, the tears come before I can hide,
Before I can imitate, be like everyone else,
Sometimes the tears, are the only way to show I don’t know,
Don’t comprehend, the confusing mess that to everyone else is the simple interaction amid the throng of humanity.

Printed from: http://www.jewishpress.com/blogs/guest-blog/taking-the-words-from-my-mouth-poem/2013/01/02/

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