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Tuesday, February 26, 2013

An Open Letter to Adam Lanza, The Media, and Society from an Adult with Sensory Processing Disorder




There are three things I know for sure about Adam Lanza thanks to the news media, as I sit and watch from my cushy perch miles away from Newtown: he had brown hair, he lived with his mother, and he inexplicably gunned down defenseless children. Oh yes, and he had Sensory Processing Disorder (SPD) – a controversial, neurological puzzle of a diagnosis direly lacking in research and medical support. I too have brown hair. I too have SPD. But there is one major difference between me and the skeletal figure whose face haunts the news: I would never hurt a fly.  

I was diagnosed with SPD in 2010 at the age of 27 after my new, forward-thinking therapist noticed I had some unique sensitivities. Rediagnosed, I should say, as I had been diagnosed with Panic Disorder, an anxiety disorder, back when I was 14. My old diagnosis never fit quite right. Yes, I felt anxious frequently, but under very specific circumstances – when the lights were too bright, when a noise was too loud or too high-pitched, when I could not tune out the myriad of voices conversing around me. I also hugged everyone in sight, and ravenously craved deep pressure in my torso and legs, and softness on my fingertips. I slept under piles of blankets – and never very well, I might add. I was scared and cautious about being in new environments. An old therapist once told me I worried about the wrong things – not for whether a neighborhood was safe and free of violence, but whether I would feel well in my body. Teachers described me as sensitive, and I cried (and still cry) at the drop of a hat. I was (and still am) quick to agitate, particularly in environments where the sensory input – the lights, the noise, the movement – feels big, bold, and out of my control. It is, as Beth Arky says in her piece What Is Sensory Processing Disorder? How To Diagnose Children With Sensory Issues in the Huffington Post, a “neurological panic.” A phrase I cherish. But I have always been very outgoing and bubbly – a friendly, passionate go-getter with a quirky sense of humor and a love of people and writing. SPD did not make me a murderer, it made me a little bit different, it made me strong; it made me a fighter.

I am a child of the 80s, born during a time when SPD wasn’t a familiar acronym, and so I managed to go untreated for a very long time. Once it was determined that I had SPD, my world finally came into view. I understood that my anxiety is a side effect of SPD and not the root of my problems (attempt to cope with the pain of poorly-processed sensory information for years, and I promise you will feel anxious too). I finally had a title, and a neurological reason, that explained in gentle, loving detail who I was, and why I have struggled. The SPD community is filled with adults who, like me, are coming to their senses and finally getting occupational therapeutic help. There are nurturing parents who want to help modify their young children’s’ lives to fit their needs, and parents learning how to assist their adult children in succeeding. There are adolescents learning how to transition into adulthood with a burdensome package of sensory requirements. Sure, our sensory qualms vary widely – there are seven senses (surprise! And a hotly debated eighth) and we can easily be over-responsive, under-responsive, and seeking sensory input all at once. We do battle with our senses on a daily basis, in the face of a society that has yet to understand our cause, and this struggle unites us in such positive ways.

Struggle, sure. Frustrating, yes. Disheartening, sometimes. But SPD is not a trigger. It is not the pulse of the horrific actions that occurred in Newtown, much the same way the Lanza’s brown hair was not the reason for the senseless slayings. We need to keep this in mind before we point fingers in a Salem-style witch hunt – before we look sideways at a young child who crashes into things more frequently than others; before we sever ties with an old friend who couldn’t keep up with our highly-social lifestyle; before we blame our children, neighbors, and closest confidants for being differently wired. Adam Lanza stole beautiful lives from aching hands. I will never dispute the horror and the tragedy of Newtown, and my heart is filled with love for the families of the lost. Adam Lanza also stole away a diagnosis in its infancy, yearning to be understood by society and the media. He put such an ugly spin on something I thrive with on a daily basis, in spite of the challenge. Those of us with SPD are the silent victims; forever entwined with the gaunt, hollow eyes and thin-lipped mouth of a killer.

3 comments:

  1. Beautifully written Rachel. The world needs to know and to understand.

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  2. I can't tell you, Rachael, how much I appreciate you sharing what life has been like for you and how you feel about the media making it look like people with SPD could be or become killers. Not long ago Oprah Winfrey did the same thing when she aired a story about a boy with SPD who was threatening to kill his mother to the point the mother had to lock herself in her room when she slept at night. Soon after the SPD Foundation disputed this with the Oprah show as they supported that SPD is not a cause for this type of behavior. My little precious boy who is 8 years old has SPD as well. He is such a joy and a blessing to us. What you describe about yourself describes our son. He was not diagnosed until he was 3 1/2 years old, despite us asking again and again, as professionals did not know how to diagnose him. Finally a friend suggested we have our son evaluated by her friend who worked with special needs kids in the school system. He was then diagnosed with SPD. We are so grateful for all we learned and all of the professionals who have helped us along the way. The SPD Foundation and Dr. Lucy Jane Miller have helped us in many ways, most especially through the book written by Dr. Miller, Sensational Kids.

    Due to our son's SPD, which is severe, we homeschool him using a tutorial group and curriculum called Classical Conversations. Our son meets one day a week with a small class of 6 kids, and a tutor for a day of school. They eat lunch together and do recess. All of the parents are required to attend and be in charge of their own child's behavior and needs. This is a class of typical kids, except our son. The rest of the week, we take our son to his special classes such as Legos, robotics programming, sloppy science, and a gym class that is like big kid OT as well as do OT, PT, speech, and vision therapy. We accomodate in every way possible for our precious little boy each and every day. We have used a nutrition plan by Dianne Craft that helped his speech improve and helped with some of the sensory overload. We also have him wear his earmuffs when the sounds are too loud for him. He wears an Under Armour style "squeezy" shirt as a T shirt or undershirt almost every day. He has always brought around his soft blanket with him for calming as it is very soft.

    Oh, I just can't tell you how much I appreciate hearing your story! Hearing from an adult with SPD helps to give us much hope for our son and validates that we are doing the right things to help him in the very best way we can.

    I don't view you or my son as any potential killer due to what Adam did. Sounds as though Adam was given very violant videos and video games and was left isolated and alone for a long time. With what all his neurological issues might have been, he may have not recieved the help he needed. We can only speculate, but I do know how this news coverage about Adam has made you feel, as it has made me feel the same way as a mother to my son with SPD. I hope that more awareness of SPD will come from this however, and that soon SPD will be included in the DSM V to validate the severeity of SPD in a person's life.

    After hearing from you, I don't regret for a minute all of the ways I have changed our life drastically to meet our little boy's needs, even when I didn't understand. I know his little life must be so challenged due to SPD more than I could ever imagine. I am so happy to be the one to stand with my son day to day, helping him cope, and making life the best it can be for him.

    Know, Rachelle, that I am very sorry that you have had to endure SPD for so long and not even know what it was! I am happy that you know now what you had been living with. I hope you are able to modify life fully so that you may live happy and comfortably.

    Many blessings to you! Susie

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  3. Rach

    Just re-read your blog entry as published on the SPD University website (www.spduniversity.org) and the SPD Star Center (www.spdstar.org). This is a touching and powerful piece, bringing into focus your personal experience of living with SPD while at the same time pressing for the media and public to not judge the acts of a madman as an SPD-driven event. I look forward to reading more on your advocacy toward the recognition of SPD as a DSM diagnosis. Well Done!

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