Autism Through His Mother’s Eye’s – The First 2 Years

The Diagnosis

December 15, 2015

 Brad and I wanted to let you know that we finished up with a team of doctors today that tested Cody on several things. The results of this evaluation presented clear current evidence that warrants the diagnosis of an Autism Spectrum Disorder.  Additionally, he has a Mixed Receptive Expressive Language Disorder.

 Our immediate next steps are Dr. Stormy White has sent a referral to a Pediatric Neurologist at Children’s and that he receives comprehensive, intensive intervention therapy to promote his well-being.  This entails pursuing ABA services and Occupational therapy on top of the preverbal program that we start next Tuesday 4 days a week. 

 We will learn to be the best advocate for our Cody Rivers – Learning more about his unique needs and abilities along with reaching out for support will enable Cameron, Brad and I to be a better family to CR and better partners for each other on this journey.

 We are still learning what all this means and trying to process but we will pass along to you once we can digest it all ourselves.

 Love you BIG, Brad, Shelley, Cameron and Cody

Reading the original letter sent to our family brings such chills.  I will never forget this day.  Deep in our hearts, we already knew but to hear those 3 little words, Autism Spectrum Disorder, no one can ever prepare you for that.

6 months into our journey, I then learned the hard lesson between Acceptance and Hope and how to balance the two. We never want to lose sight of hope but it plays a tricky balance with acceptance.  In February 2016, I wrote:

In the months immediately following Cody’s diagnosis, we were mourning. Mourning the loss of what we thought was a typically developing child.  Then we quickly went through all the grieving stages  (in no particular order) and still do at times.  Then you hit the panic button wondering what therapy do we choose and what is best for Cody? Of all the 200 methods out their specifically for Autism, where do you start and who do you trust to help guide you through this journey?

But then suddenly, we changed—our eyes, like Cody’s, opened. Looking at the same landscape and seeing something different.

We pressed forward with as much early intervention therapy Cody could handle.  Books stacked in piles on my nightstand along with countless articles found on my Kindle to research and sponge everything we could learn about Autism. Our lives rearranged.

Then about half way through the year, we began to get settled into a rhythm of therapies.  Books finished, different schools of thought studied, conversations about fundraisers started, prayers said, progress snail-slow (but subtly occurring).

And recently for the first time the word “on” is contingent and he makes a vocalization when he wants something “on”. Not always sounding like “on” but he knows he must vocalize.

It’s those small steps and brings us such joy and hope.

2016 brought even more growth. Everything had increased in his development, he seems to be more present in his own surroundings and he officially will kiss you!  He engages with those he knows, watching more children play, follows instructions, has great imitation and learning to makes requests through a picture exchange system.  None of this he could do in 2015.

So here we are in the final days of 2017.  Still writing to fuel my strength and keep fighting for Cody ’s needs.  Since starting Cody’s page and You tube channel, I found myself engrossed watching all his development milestone videos today and was in Ah for the past hour.  Little did I know the smile it put on my face watching his growth and progress throughout the year.  I did shed a few sad and happy tears but the feeling of accomplished quickly wrapped me like my favorite blanket my Aunt Pat got us a few Christmas’ ago.   Not only for him but also the growth in the bond between two brothers.  It was also a reminder of the strength our family has had to endure through tough, sad, challenging and amazing times throughout the year. It is evident that Brad and I have grown to be stronger partners and advocates for autism awareness.

At the start of 2017, I started a series, CROPS.  A close family friend told me she was going to start celebrating Cody’s progress and call them a CROP.  (Cody Rivers Outstanding Progress).  Her theory is there will be bad days but if we keep trying to let the good days over-shadow the bad, we can then stay focused and celebrate another CROP!  Guess what? She was right. When I reflected all the comments that popped up with the hashtag CROP, it brought pure joy.   I loved this.  I loved watching Cody Rivers develop in his unique way of how he learns.  You can watch some of these CROP moments on his channel, Autism Through His Eyes or follow our everyday on his Facebook page and of course my blog .


My hopes, are simple and have not changed for Cody:

If he continues to grow in the way he did this past year, that is all I hope for.  As I have said before, I believe changes will continue to come and I will never lose hope.  I also have learned new things about myself that Cody has taught me.  We also have a better understanding of how he learns, what makes him happy and helping him find his voice and never giving up on him.   So thank you for my followers.  Thank you for the 8,340 views and 4,265 visitors especially those following me in Ireland and United Kingdom.   Be on the watch in the coming weeks of Cody’s journey through his Big Brother’s eyes.  May your holidays bring you joy and peace.

Here are a few comments on his CROP moments for 2017: 
This is absolutely incredible. It’s all in there, we just have to get it out!  I come down from working and Cody’s therapist did some probing and learned he can SPELL!! Pig, Mom, Dad, Cat and Dog are the ones she has probed but there’s probably more in there!  This kid is simply amazing!
 Highlight was Cody speaking to Santa on his iPad telling him his Christmas wish!
3 weeks ago before we left for New Mexico, Cody found his train set behind the Christmas tree in our LR. This is clearly a project for Dad. I told him not right now and ended up taking the train set and putting him it in my closet. Last weekend he found it in my closet and said, “open!” We were headed out the door to visit Santa and I mentioned he needed to ask Santa for a new train! We added it to his Proloquo2Go and that was his request Sunday while visiting him. Fast forward to tonight…. I was working my puzzle in the living room with a glass of Pinot, and Cody came out of my bedroom holding the train set box in his hand! He said,”Open! Open!” I called Brad and said I have a project for you as soon as you get home.
It’s the little things that make us so happy. The bonus is he also tried chicken breast nuggets tonight for first time and ate them too! #reinforceronsteroids
 Counting to 18….verbally!
Emotions are tough to learn but he is getting them! Watch this! #Bedhead
#AutismAwarenessEverydayA new Independent Work Task in action. Loving these different tasks.  #IndependantWorkTask
 A must watch! Learning to read…..My mom got him these robots and it might be the start to a great reinforcer to get other goals we have set for Cody. Every week this boy is doing something amazing!! 
 CROP: “I want up!” Well of course I lifted him in the air after he read this!
We are still shaping Cheerio so right now we say eeeeee-ooooh. This kid amazes me.  It’s so odd to me how a switch just like that, can just be turned on with autism. 

Last night he opened another wrapped gift and again you can just see the pure joy of the anticipation of what could be inside…. (Thank you MomC) Brad and I have been waiting on this precious look since his very first Birthday. Just like a light switch, this part turned on inside his brain. Makes you really understand the symbol of the puzzle for autism, until all the pieces fit….

 We have been trying to show this guy since his first Birthday how to unwrap a gift…. TODAY he actually unwrapped a gift for the very first time. I know it’s seem trivial and simple but this actually made me shed a tear. It’s the little things for sure. I could see in his eyes for the first time the suspense a child gets to see what’s inside. Pure joy.
CROP Moment: Receptively Cody understands when I read to him but check him out expressively starting to read to me! #Soproud#BobistheBEST #FirstReaders  Red and Ned got on the bus!
 Yep you just heard that… Lily and Molly 🐾 What else does he know that we don’t know??!!??
 Check out those swim strokes from lesson today! He’s getting stronger everyday!#Myfish 
 iPad is still a reinforcer for potty success! Success = 4 minutes of iPad 

The kid decided to work on learning cursive tonight! Watch this!

CROP: Beginning stages of learning to vocally read. #Bobbooks  Learning site words early on was key. #Preschoolprep phonics blends and site words!  #proudmom
 Getting stronger and building some trust with Rachel. Watch how she pushes away and makes him swim to her!  CROP Moment! 
Early stages of reading! “The N-Da” (The End)
 Today marks 2 weeks on this Potty  Train! Go Cody! 
 CROP Moment! This little fish no longer used his puddle jumper and has shifted to the noodle and then at the end of lesson used only his therapists hand on his chest. So proud of this guy embracing and loving it! 6 lessons ago, he would not get into pool! Making great progress and pray this transfers to other pools we may swim in the future! 
Counting and giving how many fingers too! Learned yesterday and transferred to me this morning! #CROP
 Last week we worked on words on cards and Cody would match word with a picture of the word. For example: Boy and a photoof a boy.  This week, they show picture or word and he is saying them! #MyNEWReader 
Imagine that more 🐻 bears! Colors, counting, sorting, you name it. He has mastered.
 L sounds have been a booger! Look how proud he is when he does it. Love Raz Kids
 Colors! Cody can identify any color but we’re working on vocalizing them. #Breakfasttherapy #bedhead #sunday
CROP Moment! He knows his numbers up to 20 by receptive labeling and truth be told probably much higher…… BUT listen to him vocalize his numbers without being prompted up to 10! #Sevenisatoughone #TeamCody
Nothing better than a little morning conversation with this one. #progressinmotion #workssohard
Walk on Mulan!
 CROP Moment PART 2: Minutes late of shaping the word, we officially get bubble! So proud how hard this kid works!
 CROP moment! PART ONE: Once Cody learns a new word and makes several requests we then start “shaping the word” to how it’s a pronounced properly. This first video will share how he first starts saying the word, bubble.
 Another CROP yesterday! We started using Cody’s number folder on Proloquo2go to count. Therapist used an index card with number at first then transferred him quickly to select off his iPad. Today they will now pair with vocal and remove the PECs all together and wa la! The boy can count objects!
 What does the monkey say?? What does the horse say?
OT success! Getting stronger, following direction, imitation, coordination, listening, gross motor!
Since Spring Break week Cody’s vocal imitation has drastically gotten better! He has closer approximations when requesting, is imitating things we are saying on his own, starting to blend and can elongate sounds. His vocals have made a huge jump just from last week! 
Camo made this video for me to share next week when I train his school on Proloquo2go!
 Another CROP happened! Loved our lunch with “Papa” and “Ganny!”
 Working hard to earn his reward he picks off his iPad/Proloquo2go! Once the token board is completed, he will select a toy off his communication device. #ProgressDaily#Autismawarenesseveryday
Next step is to get this question to transfer to anyone that asks him. Next time you see him please be sure to ask! #Progressdaily #AutismAwarenessEveryday
 PE teacher was getting ready for her first class this morning at school and Cody went over there and started dancing! Brings back so many memories when we used to do our music class together! He loves it. 
 2 weeks behind on this one but saying “bok” for block! New word… notice how he perfectly aligned them too! He also throws in a a few of his typical dance steps when he hears music! 
 Proloquo2go paired with great therapy has opened up so many more doors…. in less than a month, Cody navigates through several folders with over 100 words and tonight he decided to say his first sentence! He whispers it but I’ll take it. So proud of you Cody Rivers! 

No editing needed… “I want spin” 2x’s in a row! Our boy made a sentence!

 Pa- ink! #Texan
 So fascinating to me…. you prompt Cody to wave paired with an imitation of how to do it. He literally waves just as MY hand looks by standing in front of him saying hi. Look how he turns his hand to face him to match mine? These are the teaching moments where you work on how you can teach him in the way his brain learns not how typical brains may operate. #Differentbutnotless#learnsliterally #smartboy #lovehiminblue
 Someone recognized a cool way to sing the alphabet! Thank you for helping my son find his own voice through music! Loving the Music especially from a Mom that grew up listening to Cheap Trick!  #AutismAwarenessEveryday #RockYourSpeech
 Already building sentences! This is phase 4 of 7 in the PECs system. Once he gets that concept we will then transfer him over to proloquo2go
 For the last 3 weeks he continues to grow! Letters and numbers week one, shapes and colors week two and different colored shapes week three! Go CR!
 They did a little probing today…. look what the stinker knows that we didn’t even know!! HIS SHAPES!!!!! He’s never seen these cards until this video was taken! So much bottled up in his little head! #AutismAwarenessEveryday


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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