Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Kaden (1), Other, Loudon County


"We have been through a lot of doctors, and we’ve finally found the ones I like. None of them say, “He can’t do this” or “He won’t be able to do that.” None of them have ever said that because I wouldn’t go back to them if they did. "

  • A Parent's Perspective
  • Posted on 10/22/2012

Kaden is 20 months and we don’t have a diagnosis yet.  It’s just considered a severe developmental delay.  He’s got hypertonia and hypotonia and a neurological condition that’s causing everything.  He was 9 months old before anybody started figuring out what was going on.  Nine months is when he had his first MRI. He’s also had a condition called gastroparesis when he was born, which is where his stomach was paralyzed.  Instead of his stomach crunching together, it wasn’t contracting enough.  That caused him to have a lot of reflux and throw up a lot so he couldn’t lie on his belly and he couldn’t sit up because everything in his stomach would come right back up.  They thought that was the reason he was behind.  Nine months came along and he still wasn’t doing anything.  I asked to have him tested and they said he would catch up so I just took matters into my own hands and asked for an evaluation from TEIS.  We see neurology, ENT, ophthalmology, gastroenterology, cardiology, genetics, all that.

The most challenging part at first was finding doctors that understood because the first doctor he went to, it took me nine months to convince him.  They said he would just catch up, but I said, “He’s nine months old, he’s not rolling over, he’s not sitting, he’s doesn’t even realize he has arms.”  So I took it upon myself and called TEIS and had them do an evaluation on him and at that point I was so mad at the doctor I switched him to another doctor and finally got the ball rolling and visiting all the specialists and everything.  Four GI doctors later we figured out what the stomach issue was, so that’s the most challenging part.  Just getting the doctors to believe me.  They thought I was just a new mom who was over worried because he was my first child.  They said it would be ok and he would outgrow it.  I was like, no, because I’ve been involved with Special Olympics for 16 years.  From all the experience I’ve learned through that I knew something was wrong and no one would listen to me.  That was the hardest part was finding someone to listen that there was something wrong. 

Another challenge has been getting a vehicle that will accommodate his wheelchair.  I was driving a little Ford Focus and it was awful trying to get it in and out of there.  I switched up to a mini-van finally in February.  We have to leave our home too. They only have a limited number of accessible apartments and they’ve not had one available for three months now.  I have to move out of government housing because they only have two in this complex.  They just don’t have enough.  We are trying to move to Lenoir City.  I want to be sure he is close to a playground that has some accessible stuff. Kids his age want to swing.  Most of them don’t have swings he could be on. We have an accessible swing at our playground here, but I can’t put a baby this small in there.  It’s more for older kids and adults.  Babies want to swing too. 

All of his doctors are in Knoxville.  TEIS was helping us out with that and finding support groups.  We have been through a lot of doctors, and we’ve finally found the ones I like. None of them say, “He can’t do this” or “He won’t be able to do that.”  None of them have ever said that because I wouldn’t go back to them if they did.  When you have a child with special needs, that’s just not the way you look at it.  You have to look at it as if they are going to be able to do everything that a typical person can do, just differently.  That’s how you have to raise them, too.  If you make them feel different, then they’re going to act different and they’re going to think that they’re different.  It’s ok to be different, but they can still do the same things everybody else does, just in a different way.  That’s the way I’ve always taught my “kids” in Special Olympics.  I tell them if they have any issues with someone to just let me know because I don’t mind going and talking to someone. 

My parents and grandparents live 5 minutes away.  My aunt lives with my grandparents so we’re all really close.  I have a small family, but we are close.  My whole family didn’t fully understand about children with special needs until Kaden came along and he has opened their eyes a lot.  You know, they can go to school until they’re 21 and how actual special education classrooms work.  It’s really opened their eyes to what parents go through.  I always try to explain to everybody that I do it the same way they do it.  He’s my child and whether he has a disability or not you do everything you can for that child.  It’s not any different, just a little bit harder. 

 

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