By Debby Shulman
April is Autism Awareness Month and it bears great meaning to my family. It’s easy to hop on bandwagons of organizations we believe in, and occasionally volunteer an hour or two but it’s another thing to throw yourself into something you feel an emotional commitment to – because it’s the right thing for YOU.
I never understood or realized how personally committing to a cause could bring such intense gratification and inner peace. I never grasped how attached my sister was becoming to her volunteer life, until it became a full-time job. I have never been as proud of her as I am today because she silently fights, researches, and recruits doctors, politicians and businesses to rally behind her and make Autism a national cause for immediate concern and awareness.
My nephew Dylan has Asperger’s. He would want me to tell you that he is “on the spectrum” and that for him, it is all he has ever known.
He is articulate, funny, and incredibly bright with a warm personality. But get into a conversation with him and the idiosyncrasies that are typical Dylan start to creep up. He is literal – so literal that when my sister told him he had the middle aisle seat on an airplane, he sat in the middle of the aisle … on the floor. Using idioms like, “It’s raining cats and dogs” would send him looking skyward, and throwing a slang term into a sentence like, “he is so hot” has him wondering if someone has a fever. He communicates his emotions through writing; his journals, poetry and love letters to my sister, my brother-in-law and his little sisters are filled with proclamations of deep love, inherent kindness and heartfelt attachment. He can write what he feels beautifully, but there’s a mysterious disconnect when he wants to say it out loud. When he verbally emits emotion, it sounds somewhat mechanical and rehearsed. It would make sense – he has been taught to respond with the right words at the right time and while we assumed long ago that he might not register feelings and emotions the way we do, we were quite wrong.
Eye contact is hard but he overcomes that obstacle because he has so much to say and offer.
His “Little Man Tate” personality is addicting; his photographic memory is nothing short of crazy. He took one look at a city map of London and proceeded to guide my sister, brother-in-law and nieces all over the city for days on end … never getting lost.
My sister is his emotional compass and guide. Kids with Asperger’s need to have a map; both literally and figuratively. It helps them gauge where they are going and what is going to happen when they get there. She registers where he is, emotionally, physically and arguably, academically as well. She is forever one step ahead of him – preparing him for what comes next, knowing what he will need before he can predict it himself. It is not an easy road and filled with so many obstacles … because life is so unexpected. So, when she became involved with Autism Speaks, I assumed it was a way to garner more information and do a little community work. I figured she would meet some good people who had similar stories to tell and that it would be a meaningful experience for her. And while that might have been her initial expectation as well, her life is now a whirlwind of professional obligations, public speaking, travel and fund raising – all on behalf of Autism Speaks. This cathartic, life-changing experience has brought her beautiful new friends and colleagues, experiences that are as emotional as they are enriching and an opportunity to do something very significant for the thousands upon thousands of children who are diagnosed with Autism and Autism Spectrum Disorders each year.
Every single one of us, right now, knows a family who has a child on the spectrum.
Every 11 minutes a child is diagnosed with an Autism Spectrum Disorder. Our schools are not at all equipped to handle the academic needs of these amazing students and while we may label them, “Exceptional Learners” — there is not a curriculum that assists our teachers as to how they can best meet the social and emotional needs of these unusually talented, ‘exceptional’ kids. So, mothers and fathers like my sister and brother-in-law, and so many others, arm themselves with research and information and take on this grass-roots fight on their own.
Medical advances are on the horizon. So many children on the spectrum are medicated – to help them focus, tune in and appropriately concentrate – and these medications are getting better and better. Strategies and diagnostic tools for early detection and intervention are out there, and good pediatricians are spreading the word about looking for signs as early as 3 months old. The recognition of that beautiful blue puzzle piece is beginning to resonate with so many people. Understanding what that piece signifies is critical…
Kids with ASD seem to be missing something and putting the puzzle pieces together is what the Autism community is looking for.
So without reservation, I am asking you all this month to change your outdoor light bulb to blue. Easy, right? I am stocking up and making deliveries to my friends and neighbors, to the people who I love who know Dylan and love him fierce. I am watching my kids bring awareness to their school community in order to provide compassion and understanding to their fellow students who need it the most. I am supporting my (little) sister, who is my rock, my girl and my role model and I am finally understanding why she is tireless in her efforts to make it right on behalf of everyone who is going through what she has.
Nobody should go through it alone.
Let’s Light It Up Blue. Show that neighbor, your friend or your sister that you can shine a light on something that touches our lives each and every day. It’s the smallest of endeavors that say the biggest things.
Lisa Barr, Editor of GIRLilla Warfare: Debby Shulman is a college essay consultant and academic tutor with a private practice in Northbrook, Illinois. She also professionally collaborates with Amy Simon College Consulting in Bannockburn, Illinois. Debby also blogs about Motherhood/Teen issues for Your Teen magazine (www.yourteenmag.com). Check out her valuable advice.