The Giant Dipper

Imagine your favorite roller coaster ride.  At times you felt joy when you hit the dive drop and wanted to hold your arms high with the wind in your hair, other times where you felt worry as you were clicking your way to the top to lift you to the initial launch hill and other times where you just flat out were pissed because you have to wait in the long line that took over an hour long to ride this thriller coaster again! Pretty much sums up my week lastweek!

Watch the first minute of this video to feel these 3 emotions:

I tried to gather my thoughts on several occasions to post an article and found myself starting about 4 separate blogs all of which unfinished. So, her is my Joy, my Worry and my Pissed moments from a crazy week.

Let’s first start with pissed and conclude on a joyful note.

Disclaimer:  By now you know me well enough I will try to find a little joy in every moment.

My PISSED:

After 3 ARD meetings, 2 pre ARD meetings, 2 different schools and 2 sets of evaluations from OT, Speech and Behavioral people and about 10 bottles of wine,  I am excited to say, Cody will be a Flower Mound Falcon and his parents are looking forward to working with their teacher in the Self Contained/Communications Class with additional Speech and OT.  This teacher came highly recommended from 4 sources and hear great things about her kiddos. (She was also teacher of the year 2 years ago)   We started this past Monday and plan to attend 2 days a week and will gradually add a 3rd day in May until end of school year.  Depending on how summer goes, we will then continue when school starts back up 3 days a week.

He is the youngest in his classroom and with CR having a September birth we will gain an extra year.  The principal started and I quote, “Everyday he is not here is a hit again my attendance so keep that in mind that is a strike against my school!” I politely and gently explained even though I was boiling inside, “This Admission, Review and Dismissal (ARD) Committee meeting is about Cody Rivers and not a school and their attendance counts and funding. This is something you should discuss with The District or the School Board and not the parents  if you get “strikes”  against your school but we are here to discuss Cody and what Cody’s needs are for his development.  This is a committee meeting for him.”  Brad said I handled it well and he was proud of me and thank goodness he was sitting by my side so I did not lose my cool.  I know she is just doing her job but these are things that are not my concerns and when you are gathering to discuss Cody’s Individualized Education Program (IEP) that’s the only thing we should be discussing.  After all, that is what they say the ARD committee is for right??!!?   I share this with all of you because I think I had my first “bully” experience last week when she learned we were not going full time (yet).  Again, I know everyone has their jobs, but wrong place, wrong time.  This meeting was about Cody.

As we have learned from each other, all our journeys are different and the therapies will always look a little different depending on our child’s growth and their individual needs. I know in my heart Cody needs 1 on 1 right now at the frequency he is currently getting at home.  It is making a difference and I believe the blend of his 30 hours ABA plus 6 social/school hours at his new school will be perfect blend right now.

My WORRY:

So I was not the only person who felt bullied this week.  Before I continue, no words can express the proud moment I had for Cameron. Last Thursday, he chose to wear his Autism Awareness t-shirt to school.  In one of his classes towards the end of the day, a boy started laughing at his t-shirt.  He then started explaining to the boy about autism and how his brother has it and that he should not laugh but the boy continued. At that point, Cameron’s’ friends chose to step in and tell the boy how disrespectful he was being but he continued to laugh.  I asked Cameron what he was doing during all this? He said, “Honestly Mom, my hand was tightly in a fist and I was ready to kick his ass.  But, I thought about it, and did not want to spend even more time with him in ISS (In School Suspension) so I ignored him.” I then asked was he a big kid? He said, “no, I could have taken him out in one punch!”  My eyes filled with tears because as a mom you worry for your children and don’t want them to have to fight these battles. I did tell Cameron, this will probably not be the last time this will happen simply because several people especially middle schoolers do not have the awareness.

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Last Friday, Cody has his routine follow up with his Pediatric Neurologist.  We no more got out of the car and he started crying by the looks of the building as we were approaching the entrance.  We approached the sliding glass doors and he actually stopped crying for a split second, stimmed when they flew open with excitement and I seemed to even get a quick smirk. We then walked past the main desk and around the corner to the elevators and the tears started up again. Elevators are not FUN. And his neurologist is on the 4th floor and the stairs are at the other end of the hospital. So as any mother would do, I started trying every calming technique I know but his  anxiety was building and building. So, I am going to end this part of my worry portion because it only got worse. Dr. Golla did not get to even get 2 feet from Cody and we were not even able to get his weight on a wheelchair type scale!  The upside was I got the referral I needed to the ENT Specialist which was the main purpose.

My PURE JOY:

This feeling started Wednesday and was sprinkled in through certain hours of the day through Friday evening.  Some might call it a piece of the puzzle and others might call it a switch went off for Cody Rivers and his sudden burst of progress.  We honestly could not keep up and continued to increase his visual learning in therapy by leaps about bounds over that 72 hour period! Actually, we are STILL having to change his programs from one session in the morning to that afternoon session to keep up with the momentum we are enduring.  I love his therapists and thrilled that they are quick to make shifts to respond to Cody’s actions he has been displaying.  Today, we will be implementing a Picture Communication System so we can continue with this growth. BEST part is I was able to capture so much of this growth on video and share it with my family and close friends.

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We all have that person, that one person that is our “go to” when you need advice on therapy options or resources.  Zahra, a childhood friend of mine has been there for me early on before Cody’s diagnosis. I shared his progress with her today and gathering her opinion on a few communication systems and after sending her a few of the videos, she sent this message to me and it stuck with me. A moment that explains so much of what might be happening in the mind of a child with Autism.

She said, “It shows that Cody could simply not process auditory information without the visual aids. He is there. He understands everything. He just heard static and adding a visual to the auditory, he’ll be like, “Oh!! Of course!!! So THAT’S what they were saying!!”

THIS IS EXACTLY WHAT I BELIEVE HAPPENED LAST WEEK.  Zahra gets its and has lived it and truly has the knowledge and love to share with other Mom’s like me.  I am blessed to call her a friend.  So, I am holding onto hope that this continues to build and there will come a day in the near future where Cody will be able to express his own feelings to us. How amazing will that be for me to know when he is happy or sad?

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Think about this quote:

“Life can be like a roller coaster with its ups and downs. What matters is whether you are keeping your eyes open or closed during the ride and who is next to you.”

― Ana Ortega

Always learn from all your experiences whether they are make you pissed, bring you joy or give you worry.

rollercoaster

 

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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