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Wednesday, January 2, 2013

Another piece in the puzzle we call Life

     We have thought long and hard about how, when, and if we should share our "family business" as some would call it online or with many others whom we don't interact with on at least a monthly basis. After contemplating long and hard, we believe now is the time and I will explain why more towards the end. This is probably going to be SEMI-long so just bare with me.
     Wes and I have for some time been concerned about our 2.5 year old son Izaiah's development and what some people would call "odd behaviors" which we had just come accustomed to as Zay just "being Zay".  Being our first child we added all this up to being what many parents and people know toddlers and children in general as just doing strange things.

    It was probably around age 18 months when we really started noticing differences in his development and children of his age. He was doing things that he should have been doing months prior, wasn't interested in things that children his age should be very interested and entertained by.  While still hoping he was just a late developer I continued to research as most parents do. It seemed as though everytime I started digging around the internet and in my textbooks for answers to Izaiah's behaviors and delays, I was continuously being pointed in ONE direction.
   As many of you probably are unaware of I attend WKU majoring in Sociology with a minor in Child Studies and Family Studies. Therefore Child development was not a subject that was rarely visited.  In the midst of all my worrying as a mother about my child I was learning all about what would lead me to helping my son.  This past semester I was for the second time required to observe Infants, Toddlers, and Preschoolers.  My observations were a huge eye opener for me. Some of the development I observed in the Infant age 0-15 months was more advanced than my almost 2.5 yr old (not all domains of development obviously) but some.  Most of the toddlers were drastically advanced cognitively, socially, adaptive, and language. And of course the preschoolers were beyond his level for the fact they were older. 

   I was convinced, something was not right and as parents we knew we couldn't wait any longer. Having him evaluated was not going to hurt him in anyway.  We had put it off for a while, and at the beginning of November the opportunity to mention it to his pediatrician arose when Izaiah become sick with his "yearly" bug.  Dr. Lowery referred us to Dr. Liz Sternberg to set up an evaluation for Izaiah.
   After Izaiah got over his illness I got a phone call from Dr. Sternberg whom I spoke with on the phone for over an hour about some of our biggest concerns and what mostly led us to contact her. She agreed that it seemed as though something was going on and we set up a date for an evaluation.  She sent us a HUGE packet of information including basic info, surveys, questionnaires, and all sorts of stuff to fill out and send back to her.
   The day came for Izaiah's big evaluation Friday, November 30th.  We were told to allow for several hours to assess, evaluate, and work with Izaiah.  During his evaluation she observed the way he played with toys, how he played with others, how he request for things that he wants/needs, how he reacts, and a wide variety of other interactions.  We also went over the forms that we had filled out.
   Her diagnosis was as we had suspected, Izaiah was on the Autism Spectrum.  However, she could not yet confirm the diagnosis until after he had a hearing test. If his hearing was impaired that may/could possibly change alot (as he doesn't respond or pay attention most of the time when spoken to but stays focused on whatever he is playing with or whatever he is doing) not hearing would be a cause for many of his "symptoms" per se.  We scheduled an appointment as soon as we could to have his hearing checked at the commission for children with special needs.  As we suspected his hearing was perfect which we had assumed.
   In the mean time we were going through all the intake process for entering the program First Steps for Izaiah to receive therapy for his delays (whether he be diagnosed with Autism or not) those delays at his age still needed to be addressed.  We are still in the process of all the first meetings necessary before he will begin his therapy.
   While we are waiting for followup appointments Christmas comes, for many people Christmas as an exciting time of year and for us it still is...but at the same time it is very stressful, a little depressing, and trying.  We spend most of our time at Christmas trying to encourage Izaiah to be interested in opening gifts and the wonderful presents that everyone has chosen for him  although he doesn't really have the patience or attention span to sit still for such an activity.  The other part of the time we are taking turns chasing him around making sure he doesn't break or harm anything, including himself.  Try to get him to try any of the amazing food that has been cooked for Christmas but he is so picky and sensitive to the textures that he refused to eat any of it.  We try to get him home for naptime to keep him somewhat on schedule to avoid meltdowns and fussiness but as we all know that is a challenge on holidays.  This is just a small bit of what we continuously have to think about on busy days like this.....Anywho...I got a little sidetracked in the Christmas business.
   Finally we are up to TODAY...Wednesday, January 2nd, 2013.  Today we had Izaiah's follow up appointment with Dr. Sternberg scheduled to revisit the previous eval after his hearing results came back.  Today the Dr confirmed what we had suspected. Izaiah is on the Autism spectrum.


 For people who we rarely get together with maybe every month, few months, or just holidays it may previously not be that obvious to. Others who are around us frequently may have suspected it but may still be in denial but unsure.  However, we were not recommended or suggested to take our son to have him evaluated. WE CHOSE TO TAKE HIM.  We were concerned, We put all the symptoms, quirks, delays together and felt that it was very likely he fell on the spectrum.  If there is ONE thing in life I am good at it is "my son". I may have my faults as a parent (most do) but I know my son like the back of my own hand.  I have spent most of the 2.5 yrs of his life by his side, followed by Wes and we know our son and what is best for him.
   With this being said, my main reason for sharing this is because I don't want my son to be "misunderstood", he cannot yet defend himself so that is what we as his parents can do for him.  He is not a bad misbehaved child, he is not purposely unruly, or a "whiney" child.  He does get discipline and rules imposed on him, though he may not understand them all or follow he is learning at a slower rate.  He has Autism, but that is NOT all that he is.  Although it does control or influence a lot of what he does, how he behaves, and how he reacts he has his own personality and he is his own person.
  His diagnosis does not change the him.  He is the same son that we LOVE SO MUCH , and the same healthy 7 lb. 8 oz 21 inch healthy baby boy that was put in my arms 2.5 years ago.  The diagnosis is a just a step for us to help him, support him, understand him, and learn more about what goes through that awesome head of his.
In this post, I am not going to go in detail about his symptoms or what life is like in detail with Izaiah. I will post more details after we are through with coping and dealing with our feelings.  I will however post a link to a video that I believe is very informative for those who don't know much about Autism Spectrum or think you know but are unsure (AT THE END OF THIS POST).  At the same time I would also like to point out that it is a wide spectrum that consists of MANY different aspects.  As every child is different...Every child with Autism is different. So what you may have heard about autism is not true of every child with autism.
Much Love from The Keown Family and wishes for a Productive and Happy Year 2013!

http://www.youtube.com/watch?v=lbXjW-cX9kQ

11 comments:

  1. Much love to you, Wes, and especially Izaiah from Aunt Penny, Uncle Keith, and Granny.

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  2. Love you.. Love Zay... I'm here if you ever need me. Autism Spectrum is the most beautiful and fascinating of them all!! I know you will find the blessing in all of this (but I'm sure you already have).

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  4. We love yall too, and yes VERY Blessed. He definitely makes everyday very special and exciting...never boring. Hate that he has some struggles to go through but Love him for who he is and wouldn't change him for the world :)

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  5. I cried when I read this! Not because izaiah has some form of autism but because you and Wes not only had the courage to admit something wasn't right but to also share your story! It really touches me that y'all are still treating him as a regular 2.5 yr old instead of like he is handicapped that also takes strength and courage! God has a plan for everyone before they are even born! I will say a prayer for your family but I know without a doubt that y'all will be fine!! It will be a learning process for all your friends and family on dealing with certain situations but this is only one obstacle in life's journey! If you ever need anything even if its just to vent don't hesitate to ask! I know we may not be great friends but I will always be there for another parent!!!!! God bless! Love the Johnson family!!!

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  6. Welcome aboard! My daughter was diagnosed as well! It has been so much fun watching her grow!

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  7. Thanks everyone! I'm not sure who the last 2 comments are from. Although i'm sure it must be someone on my facebook

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  8. My cousin was diagnosed as well! :) praying for you guys.

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  9. Matt, Lindsay, and I love you all very much. You all have shown so much love to everyone and having the courage to tell your story is amazing. Cara, you and Wes are wonderful parents to Izaiah, and he is an extraordinary child. Never let anyone tell you all any differently. May God continue to bless you all and make each day even more special then the last.

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  10. Thanks guys. He really is a special child and does bring so much joy to our lives :)

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  11. I knew from the very 1st day I saw my grandson,Izaiah, he was very special! Afterall, God never makes any mistakes and knows just what He is doing when he makes each and everyone of us. He had a special plan in mind for Izaiah! He is such a blessing to me and our FAMILY! You and Wes are such great parents and truly want the best for him! I trust and have faith that he will thrive and grow in every area with the therapies he will be receiving.I know there will be struggles and hard times but that makes you stronger. I love you, Wes, and Zay, and whenever you need me, let me know!, thats what moms are for!!

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