Stepping Inside

Autism is a spectrum disorder. My family currently lives somewhere in the lower quarter of that spectrum, blissfully apart from the devastation of self-injurious behaviors but firmly entrenched in a nonverbal world where pictures on his iPad are used solely to communicate. Of course, it all started with “wants” such as crunchy foods, breaks, preferred spinning tops and to go potty.  We graduated from a manual PECS over a year ago because his 3 ring binder with a strap his Ganny made became heavier than him and now we use an iPad. We also quickly learned that giving his access to a larger vocabulary that there was so much more he knew than we even realized now that he had access to so many more words.  I continue to believe that Cody lives in a more complex world in his own mind, and we constantly are trying to stay two steps ahead of him to ensure he does not get frustrated which can lead into behavioral issues. His iPad has helped tremendously to bridge the communication divide but we are still in working progress and trying to stay ahead of the curve.

I watch Cody.  I know his preferences. I know his rituals and routines, like how he likes his weighted blanket on him at bedtime and what intro to a TV program makes his hands and arms flap with joy the most and how he repetitively fills his mouth with water and looks to me to say “spit” while he brushes his teeth and how he insists to sleep with certain books.

But I may not know my son at all.

I do not know everything he understands from our shared world, or what he thinks about and is unable to express to me. Humans are programmed with a drive to communicate, interact, and share. I know my son has interest in human contact, but it is less clear how much he values sharing. It is possible that shared attention holds no importance to him, but it is also possible that he does not recognize that my attention is even separate from his and that he needs to bring me into his sphere. How, really, can I know? I respect my son too much to guess. So, with no other options, I accept. I love. I apply pressure to his legs and shoulders which provides him comfort or I tickle the inside of his arm which he pulls away but quickly puts back out for me to do it again. We laugh together and at times I get a glimpse of when he watches a TV program and laughs at the right time but the next day he may not do it. It truly comes in waves.

Most people do not understand this world of autism. When people hear that my son cannot speak, they tend to respond with: “It must be so hard to never hear ‘I love you.’ ” Really? Would I waste three words on declarations of love?

Occasionally, my son seems vocal in his Speech and ABA therapy sessions.  When this happens, I close my eyes and listen as if he was speaking full sentences. I learned to love these moments and they are precious to me. I strain to listen closely and remember every detail and if he says two partial word sentences, I add words to make it complete, thinking of his sweet voice saying it. I am never waiting to hear about love, or about myself at all. I simply want to hear my son’s thoughts about his world.  That’s the toughest for me. Him not being able to express his thoughts, concerns and happiness and I am always having to assume unless I am lucky to catch one of those random waves.

He and I have a special unspoken bond but sometimes I just don’t know.  I wish I could step inside his head just once and see the workings of his mind, even just once, to carry us through a lifetime.

Family highlights last week: 

Cody went on his first bus for a field trip!  His expression looks to be that he did not enjoy but Mrs, Gray said he has a blast!  I think this was his “cheese” face when taking a photo!

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Mom and Kirk got to see Camo warming on of the field for a playoff game!  Summer is here. It was a short visit and already miss them so much!

Cody enjoying his gym time on field trip with his Speech therapist Julie!

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Published by mamalamaneustupa

Bio My name is Shelley Neustupa. I am a mother of two cool boys and a wife of 22 years to my high school sweetheart. My oldest son attends the University of Oklahoma. Boomer! My youngest is in 2nd grade and was diagnosed with Autism and Mixed Receptive Expressive Disorder at age 2. Since his diagnosis, I promised him I would advocate and educate as hard as he works each day in therapy. I began writing and have been able to touch many parents that may be new to this journey providing them with actual experiences (not candy coated), support and resources through my entries. Writing is my therapy and my hope one day that my nonverbal son will be able to take these diaries and speak about his own journey and how autism relates to his own experiences. Who knows he and his older brother may become National Speaker’s one day? Come along on our journey to better understand our lives through the eyes of a boy with autism, his Skilled Companion dog Jude, his big brother (and best friend) and mom and dad. My raw vulnerability captures the everyday moments of our journey and will bring even more awareness. A week does not go by where we do not learn something new about ourselves and I want to share these chapters with you. My Sons Undeniable Strengths… Extremely smart and figures out things quickly. Has a memory that allows him to remember more things than I could ever hope for. Persuasive by his personality and sheepish looks. Overabundance of stamina and strength. Loves the outdoors. Enjoys life and always has fun with an unforgettable smile. You can find us here: Writer: Autism Through His Eyes Facebook Instagram YouTube Pinterest Canine Companions for Independence News Interview Cody and Skilled Companion Jude - Our Story

One thought on “Stepping Inside

  1. You, Brad, and Cam have your own special bond with Cody. And while he is not verbal to express
    his love in words, he FEELS your love and gives his in return. Thank you for your blog as it’s a
    good reminder to never give up in trying to understand the mystery of Autism.

    Liked by 1 person

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