428 hours in Waiting Rooms

As a mother with the child with autism I think about the countless hours I have sat in waiting rooms.  Actually it’s been about 428 hours but who’s counting!  I have this knowledge because of my amazing husband who tracks Cody’s therapy.  You might think what a waste of time sitting hours on hours but I must tell you it’s been some of the most effective and well spent hours for me.  It a time for me to reflect, educate, increase my resources, cry, celebrate and focus on my own well-being by surrounding myself with what I consider close friends now or spending some time alone.

IMG_2715

I can recall when I first started down at the Callier Center I had the opportunity to observe and watch Cody from an observation deck waiting area where I truly learned his behaviors. This is when I really understood the meaning that when you’ve met one child with autism, you have only met one.  At this time, we were new parents learning about autism with Cody’s recent diagnosis.  We would sponge and listen to every single word that every parent would say about their child, therapy options or understanding what all the different types of doctors we should consider.  We would even try to read the lips of the professors through the glass windows when they would talk to the clinicians giving them suggestions on what to try or improve upon when working with Cody.  Brad and I would then come home in the evenings sharing all about what we captured from those waiting room hours.

Once I learned the schedule during the three hour wait time, I then would strategically plan a walk during the time that I knew I could not observe because they were off having a snack or on playground.  Walking was my anxiety release and this is when I purchased my Fitbit!  If I am not writing, I am walking… I guess you could call me Forrest Gump.  Where I did not walk from coast to coast like Forrest did,   I did walk and learned every high rise building in the medical district in down town Dallas!  The campus security got to know me by name and if I was walking the perimeters of the parking lots they would drive to check on me.  There was not a piece of concrete that I did not touch.  On rainy days, I would tackle each floor of the T. Boone Pickens TWU Medical Building climbing the stairs and walking each floor up 15 plus stories.

This particular year is where I met some of the most loving parents to this day.  We were all faced with the same journey wanting the best for our children and trying to figure out what those therapies should looe like for our children.  There were times in the waiting room where we would cry, be scared because of an upcoming MRI or genetic testing appointment, sad that we were observing some regression or question over selves as to if we were doing all we could do for our children BUT what we also did is made each other laugh, remember how to smile and celebrated every small step.

Brad sent me a  quote this week while he was traveling for business and he said,” Maybe it’s not about everyone showing Cody how life should be rather it’s Cody showing us what it really means to live.”

I will say the countless hours in a waiting room has taught us alot.  There is no right or wrong way of what you’re doing for our child and you sometimes just have to go with what feels right and follow your heart.  Or, call one of the Callier Center moms or dads to talk through your options.  This always made me feel better!

When Cody finished up at Callier Center, we moved to a different building in the same medical district and started intensive outpatient therapy for Cody at Children’s.  This was 4 hours a day for 4 days a week and they had no observation area and only three children worked together at the same time so you did not meet many parents.

This waiting room is where I spent a lot of time educating myself on how to continue therapy around the clock outside the times Cody was working with therapists.  Brad and I started attending parent training and meeting with a support group every week during this time.  If we were not doing parent training, we would find a quiet spot and this is where I started gaining ABA knowledge by studying and reading in the wait area on how we could offer Cody 24 hour therapy that he needed.  This is when we realized therapy never ends and needed to be happening all the time to be able to gain the momentum and learning opportunities needed for him.   We spent about 22 weeks in this waiting room and I now feel more confident and understand Cody’s needs.  I also feel like I can ask the right questions with speaking to his BCBA and Speech therapist to ensure that we all collaborate and on the same page when we discuss Cody’s goals. .

Today, I spend less time in waiting  rooms since we now currently have in home ABA 30 hours a week plus speech therapy on Friday’s.  This is when I started focusing more on my health and well-being.  I saw on social media this week a quote, “ Autism Moms be like – I definitely cannot die. Not even of old age. Confessions of Asperger’s Mom. “   I need to stay healthy for both of my boys. I do not know what the future will hold for either of them.  And for Cody, at this point I do not know if he will even be able to live independently.  So my waiting room these days as been in the kitchen preparing clean eating or on the trails in my Highland Village challenging my Fit-bit friends to workweek challenges.

IMG_2721

As I sit here this morning in the waiting room at Cody’s speech therapy, listening to him work so hard to say the most simple sounds, it inspired me to share what has been happening all these months why sitting in waiting room. I chose to work just as hard as my Amazing CR does and will continue to do so.

IMG_2713

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 “428 hours in Waiting Rooms

  1. Cody will always be a determined boy and ever so grateful for all the support and love given to him
    by his mom, dad, brother and countless friends.

    Liked by 1 person

  2. We are so proud of all of you so Shelley, Brad, Cam, and especially Cody, 😍 , it’s one day at a time, your blogs are so meaningful , helping everyone to understand

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

<span>%d</span> bloggers like this: