The Invisible Disability

I often hear, How can he have autism? He looks so normal.  He makes great eye contact.  He must be high functioning.  Autism is an invisible disability and it does not have a certain look.  The reason I am so transparent with our journey is because of learning the lack of education about autism.  I don’t judge these people because I realize what I was not aware of before Cody was born.  If you only looked at photos on social media, you will see a very happy boy, always smiling who seems to be developing and thriving at the same pace of his peers.  You may even have people judge your journey or not have a full understanding of the challenges he overcomes every single day of his life.

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I love questions. I love when people are inquisitive and want to have a better understanding. Most of the time the questions do not come from adults but from the 6 year old friend who may be waiting in line behind Cody. Why does he not talk? Why does he flap his hands?  This gives me, as a parent an opportunity to not only educate them but also their grandparent, mom, dad or sibling that are typically nearby.  Yes, sometimes I just ignore so I am fully present with my children but most of the time, I find myself sharing autism with others.

Cody’s progress has been off the charts and it’s undeniable how hard this kid works every single day since he was 2 years old.  We celebrate progress regardless of the size.  We recently celebrated his upcoming birthday. Reflecting back on the photos, it got me thinking how much this does not show his everyday challenges.  I am one to focus on successes, progress and achievements and never the challenges but I feel it’s important for you to see this side as well to gain understanding of autism and understand it’s not always easy for him and others.

Communication:  He understands often what people are saying but expressively cannot speak back to you completely.  Imagine a friend asking, This water slide is cool! How many times have you been on it?  Cody knows what he wants to say but it’s tough to expressively share it vocally.  So, you may not get a response but instead he may jump up and down flapping his arms due to excitement!  Typically, we are nearby to respond for him but it can appear that he is just ignoring his peers or spur another question as to why he is flapping his arms.

Elevators: These used to be impossible. Literally we took the stairs. Then they became tolerable but anxiety would peak. Then we had to practice breathing techniques and had Jude, his service dog and they became more manageable.

Stimming:  He likes to flaps his arms to help self-regulate when he gets excited.  Not a struggle but for sure raises questions with peers who surround him.

Water Parks:  Last summer, we barely got into the front doors and ended up having to leave at a local water park.  This meltdown all stemmed from the loud music and a bracelet he was required to wear while in the park. (sensory overload)  This past weekend, we literally could not get him off the slides and out of the lazy river.  Open slides of course because he wanted no part of the closed tunnel slides.  I am sure the closed in, echo and darkness was too much sensory for him to endure. It kind of was for me too.

Social Gatherings:  Cody can sometimes be a sensory seeker and other times it’s just too much to manage.  We attended a pajama dance party for his Birthday last weekend. He loved his new Batman PJ’s and even wore a cape and mask for a short time.  We only got to stay a few minutes before he got to upset.  The sensory input with the lights and music was just too much for him.  We did not have Jude on this overnight trip since we spent a lot of our time outdoors in the hot sun but this would have been a time she could have helped Cody manage.  These things take practice and we just never know what the outcome can be.  The bonus though, was when we went back up to our room, we were able to capture a firework show from inside from our window.  Lots of fun lights without the noise.  He loved it!

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Bathing: We struggle with taking baths outside our home.  This takes two of us to assist with bathing and they have become a little more manageable over the years after the first initial bath.  We get very creative.

Meals and Toileting have to be thought through when staying overnight.

It’s taken us a few years to understand that the outcome may be different than what we envision with our outings.  We do not set an expectation anymore and we roll with whatever the outcome may be without getting upset or discouraged.  The amount of times we have gone to Plan B are countless and we have learned to roll with the punches.  We will continue to explore and as Temple Grandin would say, A gentle push in trying new things. Cody’s challenges that he faces every day and observing him overcome these as time moves forward, will literally change you as a person.  He has changed my life, given me perspective on how to really love, living purposefully, providing me with patience and a deeper since of compassion to those around me.  I am a better human with an open heart because of him.

So the next time I am celebrating him say a 3-5 word sentence or him saying I love you (unprompted), just know this is a true challenge and a huge win with autism!

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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

2 thoughts on “The Invisible Disability

  1. Cody is one of the brightest boys I know. I feel so blessed to have him for a grandson. He has accomplished so many tasks and meets his challenges head on. When I wake up each morning,
    I feel so grateful that God has granted me another day to love Cody.

    Liked by 1 person

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