The last 7 years

Leading through the ninth month of pregnancy, you have this perception in your mind of what life‘s going to be with your new bundle of joy. I can remember vivid conversations Cameron would say about playing baseball with his brother and Brad would jokingly mention how we would send Cody on Cameron’s dates to sit between him and a girl at the movies.

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Sixteen months later after Cody was born, I began to notice some differences.  I would doubt and question myself so I would go straight to the ole faithful book, What to Expect the First Year and quickly learn we were not hitting certain milestones.

Over the next 4 months, I found myself reading a lot to educate myself on his developmental delays. I found a questionnaire called the M-CHAT (The Modified Checklist for Autism).  I must have taken this test a dozen times desperately trying to get a different outcome.  I even sent it to my closest family members to take as well hoping they would get a difference response.

I can remember the Tuesday night I texted Brad (he was traveling for work) and said I made an appointment for next week with our pediatrician to discuss our concerns.  This was the first step and one of the hardest.

After sharing the results of the M-CHAT with our doctor, she sent us to an ENT that same day. We ruled out any hearing concerns and she sent a referral into Children’s (CADD) for us to have a full evaluation on Cody.  It took us six months before we could get in for this testing.

During the longest 6 months of our lives, we started therapies to help with the developmental delays we were seeing with Cody.  Looking back at this time, I believe is was God’s way to allow us to grieve and find acceptance in how different our lives were about to become.  I believe it gave us the time to research, educate over selves and grasp a better understanding of autism.  It prepared us to be warriors when that day finally came that we learned he was diagnosed with autism.  We knew we needed to be aggressive with his therapies because there was proven evidence that early intervention was key.

January, 15, 2015 we were presented from his doctor with a clear current evidence that warrants the diagnosis of Autism Spectrum Disorder and Mixed Receptive Expressive Language Disorder.  Brad and I both were numb.  Even though you had suspicion, nothing can prepare you for a doctor to share all what your son can’t do. To this day, after hundreds of evaluations we have gone through, it still is tough.

Driving home, our biggest worry was Cameron.  We decided to take him on a walk after he got home from school to share with him the news about his brother. That walk made an impact on Cameron because fast forward 5 years later he wrote about that walk in his college admissions essay.

You go through a grieving process.  1. Denial and isolation 2. Anger 3. Bargaining 4. Depression 5. Acceptance.   You don’t necessarily go through the stages in the same order and you tend to cycle through them a few times.  It’s very tough.  How can you grieve when you have this beautiful boy standing in front of you?  

Acceptance. You gain this sense of strength.  I did this by writing my blog and starting Cody’s page.  You will do anything for your child to provide whatever necessary therapies are needed. Whatever education you need to provide to you and others around you. And whatever training you need to provide for yourself and your family.

While exhausting all therapy resources, I can remember crying a lot the first year. Your mind wanders thinking of all the things that your child might not be able to do. The thought of the future is so overwhelming it makes you freeze up so you quickly remind yourself to stay focused on the tomorrow.

365 days pass and it hits you. Your child can do really everything.  May take a little probing and some great therapists but we quickly learned it’s been inside his head all along. One afternoon we discovered at his ABA team meeting, Cody, now three and a half years old, already knew his numbers, shapes, letters and colors!  Even though he could not expressively tell us, his therapists had done some probing through receptive labels and his data was off the charts that day!  So word of advise, just because your child may be non verbal, does not mean they do not understand.  Who knew that video modeling was the way Cody learned best at this age?  And watching Preschool Prep videos would be the key to the basics that soon grew to more. Site words, Phonics, Math, etc. It may be taught differently and not what you may see in a classroom but we quickly learned that its possible for Cody to learn and excel with his peers.

Cody could tell me he loved me through his eyes and not his words in the beginning.

Cody would squeeze my hand, instead of giving me a hug.

Cody would leave photos in common areas if he missed someone or a favorite memory of his.

Cody outgrew his Picture Exchange System. His binder grew so fast it was too heavy for him to carry around.  We learned we were limiting his language using his binder once we started using Proloquo2Go on his iPad.  This opened a huge door for him and a world of vocabulary.

Every week, we would learn a new discovery. You will hear me call these CROP’s in my blog.  (Cody Rivers Outstanding Progress)

Today, this 7 year old boy who has already spent five years and eight thousand and twenty five (8,025) hours of therapy so far, still is growing and achieving wonderful “firsts” and progress every single week.

So why share our journey with you today? Because after speaking to another new mommy this morning who recently received a diagnosis needing guidance, I felt the need to share our story from the beginning.  My purpose is to provide what I felt missing when we first learned about Cody.

I am at peace and also a little intrigued how differently he learns but masters whatever is thrown at him.  My heart is full of the inclusiveness and acceptance of all different humans I feel in my community. I am grateful for the blend of school, educators, therapists we have in place right now and forever grateful for our Skilled Companion dog, Jude VI who has enhanced Cody’s independence tremendously.

Last week, Cody attended Specials, Recess and Lunch with no teacher supports just his peers and a few friends guiding him through the routines. I am proud of this boy beyond words.

I have learned how to be the best advocate for Cody Rivers.  I have learned his unique needs and abilities by reaching out for support and my involvement.  This has enabled Cameron, Brad and I to be a better family to Cody and better partners for each other on this journey.

Keep going and never give up. Autism Strong.

 

 

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 “The last 7 years

  1. God allowed Cody to choose his own parents and sibling because he knew there were none better than y’all. Because of you, Cody is truly the wind beneath your wings.

    Liked by 1 person

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