The Beginning

tb1Carter was born 3 weeks early and the first 6 months of his life he had to sleep in a swing because he had issues with his breathing/ a lot of congestion.

Around the age of 3 months he started having what the doctors diagnosed as pediatric seizures. They said they believed he would grow out of it and he did by the time he turned one. (He had a total of 4 seizures. When he had the seizures he would become still and stare off into space and once he would come out of it he would act as though he didn’t know where he was).

From the time Carter was born and up to 1 year and 1 month – he was constantly sick with sinus, ear infections and when he would fall asleep my husband and I could hear him in the next room breathing (his breathing was so loud).

At the age of 1 year and 1 month – we had his adenoids removed and ear tubes put in his ears by a local doctor. This helped him for about a year until the tubes came out. During those months Carter started talking and we noticed that his speech sounded like what I can best describe very similar to when a deaf person tries to speak (kind of a muffled speech). We also noticed that his social and communication skills were lacking. We discussed with his pediatrician our concerns so she had him evaluated by the Child Development Center in our county and he qualified. One of the employees of the Child Development Center would come to our house once a week and work with him on these skills. It did help him for about a year. However, around the time his ear tubes came out he started getting sick again with sinus, ear infections, tonsillitis, and loud breathing.

tb2In April of 2010 his pediatrician referred us to a great ENT at Vanderbilt Children’s Hospital in Nashville, TN. In July 2010 Carter had his tonsils removed, adenoids re-removed (they had grown back) and had one tube put in his left ear. They discovered that he had a hole in his right ear drum which the Vandy ENT doctor determined it was probably from the first set of tubes that he had at 1 year and 1 month old. He still has the hole in his ear drum and he goes to Vandy every 6 months to be evaluated regarding his hearing. Eventually he will have to have the hole patched up but his Vandy ENT does not want to do so until he is around 7 years. He is afraid that if he patches the hole up now and if Carter begins to have ear infections again that he would have to go back in and put tubes back in. Right now that hole is acting like a drain for his ear – just like an ear tube would.

With the local Child Development Center they only work with the children up until they are 3 to 3 1/2 years old. Carter had turned 3 in April 2010 and I believe they stopped working with him in June of 2010. I still wanted Carter to have help so the Child Development Center had him evaluated by the local elementary school 2 weeks after his surgery at Vanderbilt. With only one hour evaluation they determined he did not qualify – meet the standards of the state to get assistance through the school system.

tb3For the past 2 years we have struggled with Carter with behavior issues. When we brought Carter home from his surgery at Vanderbilt… we brought home a different child. We expressed our concerns with the Vandy ENT a few months after the surgery and he explained to us that Carter had not been able to hear very well because of the fluid on his ears. He said that opening up his ear with the tube – that he was probably being overwhelmed by sounds. Well, it had been over 2 years and we continued to have issues with his behavior.

Carter is extremely intelligent. He loves learning. His favorite things to do is draw, color, work in phoenix activity books. He knows all his letters (he can even say his alphabet backwards), he can count to 120, he can count backwards, knows every musical instrument there is, he knows all of his shapes, plus shapes I had never dreamed he would know like hexagon, octagon, polygon, etc… BUT if it is something that does not interest him he acts out.

He is very numbers based and kind of what I would say OCD. Examples: If I asked him what he wants for lunch he will tell me – “I want 4 pieces of ham, 5 slices of apples, 20 goldfish and 2 pieces of bread.”… If I do not give him the exact amounts he will not eat until he gets that exact amount. He has a routine every night and if we get out of that routine it drives him crazy. If he gets his hands dirty (just a spot of dirt) it will drive him insane and he has to immediately wash his hands. He knows exactly how many little figurines he has and if he is missing one figurine he would go crazy trying to find it. The list goes on and on.

tb4Social wise… with other children. He will play with other children for a little bit and then wonder off. He doesn’t listen well – if he is not interested – he could care less. He will not look you in the eye… has big issues looking one in the face.

Carter is very verbal. He knows when he does wrong -but it is like he doesn’t care. In the past year he has become more loving… but he has his loving side and he has his “wouldn’t throw water on you if you were on fire”.

Carter started Kindergarten in August 2012.  From the beginning we had behavior issues.  The second week of school he was in the principals office.  Then one day we received a note from school letting parents know that the school was offering a program for behavior risk children, called Project Basic.   I immediately got in touch with the Behavior Specialist over Project Basic and scheduled a meeting.  In the meeting, she gave us information regarding the TRIAD Center at Vanderbilt Children’s Hospital.  From there I set up an appointment with Carter’s pediatrician.  In the appointment with his pediatrician, I explained our concerns of Carter possibly having Aspergers/Autism and requested she refer us to the TRIAD Center… and she did.

tb5In September 2012, we had our first appointment with TRIAD.  We had to meet with a pre-qualification pediatrician and behavior specialist.  The meeting was about 2 to 3 hours.  They discussed with myself and my husband our concerns and then worked one on one with Carter.  In the end, they did think he pre-qualified to move on to have the full evaluation for autism. There was a waiting list for 3 to 5 months with the TRIAD center.  So, in the meantime I requested Carter be tested for speech at the school and I told the school what we were doing (having Carter tested for Aspergers/Autism).  The school decided to do their own testing as well.  A long story short, Carter scored above average on everything they tested him on.  I had to fight a little to get him speech because I was told he scored what the State of Tennessee scores as normal, which is such BS.   After expressing my concerns with the room of teachers… we all decided Carter did need help and scheduled an IEP meeting a few days later.  In the IEP meeting we all decided the things that Carter needed help with.  The school has been wonderful to help.  I have been so impressed with the school’s IEP team.

On February 15, 2013 Carter had the main evaluation with TRIAD.  The appointment was about 4 hours long.  That day, our lives were changed forever… the answer we had be working so hard to get… came out of the doctor’s mouth… “He Has Autism”…  I thought I had prepared myself and I knew deep down this is what he has… but when I heard the words come out of her mouth… I went numb.

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6 thoughts on “The Beginning

  1. Shana…just want you to know that you are doing an amazing job…my son Alex had open heart surgery at 8 days old in Boston…I have always tried (as you are doing) to make sure he wasn’t singled out as being different but at the same time making sure he was protected.I always let the ones “in charge” know but never the children around him..I wanted people to know my Alex not Alex with a heart problem…like you we moms will do whatever it takes to make sure our children are happy..you have two sweet boys….I will be praying that God gives you the wisdom,strength,and knowledge you need get you through this bump in the road…no one knows the worry of a Mom especially a good Mom like yourself..hugs

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    • Thank you, Melecia. The feelings I have… I believe are normal. I want Carter to have the most “normal” life as possible. I also want people to know him as Carter not Carter with Autism. Thanks again for your kind words.

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  2. I am glad that you are sharing this valuable information with others. Though challenging behavior is difficult for those with autistic children, much joy is found in their lovable traits. Sharing your journey will educate and lead to more understanding among many and will be an introspective release for your trial. God bless you and your family.

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  3. after your blue pictures on facebook i became very intersted in Carter. Because I have an autistic brother and an autistic step brother as well. I originally went from Germany to Iceland for one year to work with an autistic boy here. I love to see what a phenomenal mom you are, going so far to get what your son needs. Great family. Carter is very lucky to have been born your son!

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