Writing Fuels My Strength

March 6, 2015

Writing fuels my strength for our Amazing CR…

We know we are going to see ups and downs during CR’s journey and at times I really think it’s just God’s way of making sure that we keep up with the knowledge gain we can learn about Autism and the many other diagnoses that come along with Autism.  Plus, it’s a reminder of the progress our Amazing CR has already shown!  What we have seen already is this unconditional love the 4 of us have for each other…sounds corny but we are even a closer network than we ever have been before.

Today was the day that we went and met Dr. Golla, Cody’s Pediatric Neurologist.  She primary offices at Children’s downtown but also works PT at Children’s Legacy.  The appointment went as expected (not one of CR’s favorite outings) and there was no shocking next steps that we were not already prepared for.

Brad and I did leave feeling that overwhelming sad feeling again we once had with his first evaluation almost a year ago.  Not because of any new information that was given but just another doctors perspective of “how to treat Autism” and made us question if we have the correct blend for therapy again…. Man, we wish there wasn’t so many options- it sure has a way of doubting your parenting!  But then Brad mentions to me the 21 therapy sessions (to date) he has already had at The Callier Center and then we are quickly reminded of what great strides CR has made already in this short time.

So what are the next steps?  Cody will be scheduled for an MRI and Genetics testing on April 11th at Children’s Hospital. We will go through admissions at the main hospital for this one because they will need to do a sedation for the MRI. Good news is they will be able to get the blood they need at the same time for the genetic testing.  I wish they had a barber and dentist to give him a quick cut and teeth cleaning all at this time too! Ha!   The thought of this just makes me want to cry… Maybe they will sedate me too! 🙂

The reason Dr. Golla ordered this testing is because a lot of the behaviors of Autism are very similar to different brain disorders and can look similar from the outside. The genetic testing will include an array of Chromosomal analysis too.

As of for therapy, our plan is to continue with what we are doing with his music class on Fridays, ECI monthly and his preverbal program 4 days a week at Callier. We have set up a PEC’s (Picture Exchange Communication) System at our home which will help Cody communicate until we can get him talking.  We even made one for Ganny too!

We will be filling the time between semesters at Callier with ECI therapy and possibly looking at additional Speech Therapy or Occupational Therapy. We might even get lucky and one of Cody’s clinicians will come to our home during that time too! There is a Feeding Specialist that will evaluate him at Callier very soon as he could have a sensory processing problem.  Basically this is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.  We mainly see this with eating and touching of certain items –  It can be common with autism too.

Writing is like an invisible cape that makes me feel powerful, hopeful and strong for our family…Thank you for reading.

I will now wear my cape and update you again after CR’s next testing.

Love to all –

 

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

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