NEW Year-NEW Chapter

New Year’s Eve

12/31/2014

Cody’s Journey thus far….

The organized freak and the person with a plan always would read up the night before CR’s (and Camo’s) wellness check appointment the first 2 years of their lives.  I wanted to make sure milestones were being met and if it would drum up any questions that I might have for their pediatricians.  I typically would read about the milestones and what your baby “should be” or “might be” doing at a certain age…..Up until 16 months CR was exceeding all his milestones.  This is when we started noticing that he would learn something new but when we would add something he would regress and not do what he was doing a week ago. For example, waving bye bye or babbling syllables like ma ma ma or ba ba ba.

At his 18 month well check he still was not walking.  Doctor did not have high concern but asked us instead of waiting until his 24 month wellness check, to make an appointment at 22 months to ensure he was walking.  At 20 months the boy skipped walking and started running!  However, we still noticed developmental delays with his speech and noticed he was not playing with toys in the way they were intended to be played with.

One night I started researching these delays and stumbled across the M CHAT testing – this is a testing that most pedistricians have parents perform o see if there is any red flags with ASD’s.  I took the test several times over a few week span to see if I could come up with a different result as it kept coming back that CR was at high risk and should be checked with a doctor.   So, for sanity purposes and doubt that it might be just me, I had Brad, my mom and in-laws take the test too….After 3 weeks of us all coming up with similar results, Brad and I decided to make an appointment  with his pediatrician so she could guide us in the right direction.

On July 11th we went to see Dr. Conger who was amazing that we had already taken the M CHAT testing. She then spent 2 hours with us taking completing the more in-depth testing MCHAT offers.  At this point she was observing some of the same results and suggested that we have an ENT rule out any hearing issue first, then if hearing is ok, to then contact a Neurologist at Children’s.  So, on the same day, there was a cancellation and I was able to get CR to ENT for testing. Testing came back fine so our next step was contacting Children’s.  This was super frustrating time for us as we knew something was going on with CR but could not get an appointment to understand what we needed to do.  This was even with the help of a doctor’s referral to Children’s.  It still took 3 weeks for someone to contact us back to only let us know that we first needed a full evaluation done through ECI.  (Early Childhood Intervention)  Once I contacted ECI, the poor guy, I can still remember his name, Roland. I broke into tears when he basically said someone would contact me the following week to make the appointment to have this evaluation completed. He then was such a saint and went ahead and made the appointment for me. I then learned that we were going to have to wait until the end of the month.  This was a long 3 weeks.

July 28th, Brad, CR and I went to the ECI office where we met a Speech Pathologist, Amy Anderson and an ECI Coordinator. This testing took about 4 hours and they were able to now give a diagnosis but did tell us he was eligible for therapy. We were still NEW to this whole process and were not sure how it all worked but knew we needed to act now as I kept reading how critical it can be to receive therapy when they are less than 3 years of age.

The following week, we were notified that this branch of ECI and been acquired by another company and there would be another 3 week delay before Cody’s first therapy session.  I cried a lot these weeks. As a mom you felt helpless.  You wanted to make sure you were providing all you could do and nothing seemed to start quick enough.   The one positive thing was, I was able to make Cody’s appointment at Children’s.  The coordinator there kept saying intervention therapy is key so continue with this therapy based on what we know he needs from the evaluation until we can see him.  This was a conversation I had with her in August and the first appointment available with Dr. Stormy White was January 13, 2015.

The result from ECI evaluation was just shocking for Brad and I.  What we learned in a nut shell is that Cody was delayed in pretty much everything except gross motor skills.  When I mention delay, I am not talking about a few months behind but basically when he was 22 months he was completing tasks at a 9-10 month old level. The frustrating part is up until 16 months he was exceeding but in that short window he had regressed that much. Hearing the doctors share this news was tough and very hard not to just break down right there in the office.  Thank goodness I was feeding CR at the time they were telling us his lunch and Brad was taking notes – That’s the only thing that kept us both from crying and losing it.  We both were numb to the results when we got in the car. We went straight to the Blue Goose for a margarita!

We started therapy with a Specialized Skills Therapist and a Speech Pathologist Therapist that came to our home each week. We then would learn what they taught us and would put into place.  CR also started day school and Faith Lutheran 2 days a week. This was to help him with social play. The transition was very tough and very hard for him – It took us about 7 weeks before he would go and not be upset.  He now loves and will walk in on his own and go straight to his room.  He typically will isolate himself and not play with the others but loves Ms. Cheryl and Ms. Lauren and I particuality have loved going to chapel with him every Wednesday morning. We have noticed great progress with his fine motor skills and learning to play with some toys the correct way and being in social environments. There is a love that Brad, Cam and I see when we watch him that is very hard to explain.  He truly is a hero to us and deep down know that he will start speaking soon.

I reached out to a high school friend who has a daughter on the spectrum and she mentioned an amazing program that the Callier Center offers downtown.  She was able to give me the direct line for the doctor that runs the program down there.  After speaking with her and where we were with Cody, Brad and I decided to get on the wait list for this Pre-verbal program. Recently, we were contacted and asked to bring CR down for a trial date to see if it would be a good fit in the event a spot opened.  We absolutely fell in love with the place and also learned that when he goes to his appointment in January, the Speech Pathologist that will be part of his evaluation also works at Callier. A week later we received the call that there was an opening and he will start on January 20th! This therapy is pretty intense and will be 4 days a week for 10 weeks. (maybe more)  He will get 10 ½ hours a week of therapy and will have one therapist solely focused only on Cody. How cool is that??  Callier just celebrated 50 years and is ranked in the top 4% in speech-language pathology of U.S. programs. It is also the nation’s largest speech-language pathology graduate program ran thru UTD.

Where we are super excited about this program for CR, it also brings a lot of anxiety for us all. Starting something new and the adjustments are tough for this little guy and Brad and I have shifted our work schedules so we can accommodate the commute downtown with our jobs and all of Camo’s activities. With my amazing husband, we got this!  We have an amazing support system with my in-laws, my Mom and Kirk who I typically will vent to weekly and my dear friends who keep me strong and my sanity by allowing me to talk about it or NOT talk about if I just need a break from it all.

We are also sad because his last day at Faith will be January 16th.  The Director was so kind and let us know he always has a spot even if he wants to pop in once we know what the new schedule will feel like.  My hopes are that we will be able to start back at Faith if we can get this little man speaking. J

I learned to really get to know and like his ECI therapists too who have been tremendous support for me and who has shared lots of resources and knowledge.  We will still keep our Specialized Skill Therapist once a month just so she can transition and connect me with the pre-school programs through LISD for Cody.  We will actually set up a meeting in March-April with school district so I can research their programs too.  This is something (if needed) Cody can start after his 3rd birthday in September.

So this is where we are as of today, December 31st, 2014. I sent the below to some of you and looking forward to what 2015 brings.

2014 was the year of the UNKNOWN for all of us.

2015 will bring us ANSWERS. Answers will bring us POWER. Power will allow us to be the best parents and provide the right therapy for Cody. POWER also brings FAITH. Our faith will give us the patience, comfort, love and acceptance for the path God has chosen for our family.

ANSWERS, POWER and FAITH brings PEACE of MIND.

PEACE of Mind brings REAL LOVE.

Yes our hands have been full but you should see our hearts. Full of REAL LOVE.

We can conquer anything when you know the UNKNOWN.

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I am ready!

Thank you for your support the last several months for Brad, Camo and I.

Happy New Year! Love you
I know deep down everything will be fine – we just want to make sure we offer all support CR needs at this developmental age. His brain is a sponge right now…  With it all being said, CR has not been a challenge but truly a blessing in disguise.  His winning smiles and laughter will literally make your heart melt as most of you see from my photos and videos.  The brotherly love is still going strong and wonderful to watch the 2 of them together. We have kept Cam in the knowing thru all of this and will continue to always keep him in the loop of CR’s progress.

Love to all, see you next year!

 

 

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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