Q & A with the pethtel family
DESCRIBE CLAYTON'S DIAGNOSIS AND THE PHYSICAL LIMITATIONS HE EXPERIENCES ON A DAILY BASIS.
Clayton’s primary diagnosis is Dandy-Walker Brain Malformation with a side of Cerebral Palsy, Autistic Tendencies, and Wolfe Parkinson White syndrome. He has a feeding tube, seizure activity, little to no muscle tone which prevents him from walking, and is nonverbal. He has many limitations. He requires full care, but loves to be in his wheelchair and wheel his chair on his own to be with people. He is very much a social butterfly in his own way.
WHAT LED TO CLAYTON’S DIAGNOSIS AND HOW OLD WAS HE?
I was 22 weeks pregnant when they discovered him with Dandy-Walker. It was explained to me that he would never live past his first birthday and they asked me to terminate the pregnancy, but I couldn't do it. I needed to give him a chance that the professionals were not willing to give him. He has had a long list of complications, none of which prevented him from fighting his best fight. He taught me and his older sisters so much which is why the sky's the limit for him in our eyes.
HOW OLD WAS CLAYTON WHEN HE GOT HIS FIRST WHEELCHAIR AND HOW DID IT IMPACT HIS LIFE?
Clayton was 5 when he received his first wheelchair to prepare him to go to school. It was awesome when he went to school. We are from a very rural community and not many kids were used to being around people with special needs. I fought to keep him out of an institutional-style school just for special needs. With his sisters paving the way for him with all of their friends, he was very well received. The kids were so excited to push him around the playground because his wheels lit up and they had been raised around him long enough to love him. When he started school, he was kind of a real-life teaching doll since children and parents are encouraged to mostly place individuals with disabilities on a shelf and I wasn't willing to do such a thing. They brought in a group of people that had those puppets with special needs to teach the children more about not being afraid to be around him. This was so well received by the children and the parents. It has been stated that Clayton has taught many that the word ”special” in special needs only means exceptional, not limited.
WHAT TYPES OF HOBBIES DOES CLAYTON ENJOY? DOES HE PARTICIPATE IN ANY WHEELCHAIR-ADAPTIve sports?
Clayton loves to be in crowds waving at people and showing his big smile. He also very much enjoys swimming. His love for water may be how he feels free from such limitations. Our future goal is to get him a swimming pool. Clayton has been a part of the Special Olympics. He graduated high school in 2025, but was still invited to attend the Special Olympics so he could cheer his friends on.
WHAT DOES A TYPICAL DAY FOR CLAYTON LOOK LIKE?
Until he is able to start going to the day program (ATF), he typically gets up, bathes, sits in his recliner in front of his big window, watches his tablet, and watches people & cars go by. His current wheelchair is very heavy and doesn't fold up, so it is really hard for me to take him anywhere. This new chair will be so much nicer with the exception of it being a little too big for the door.
DESCRIBE THE DIFFICULTY OF YOUR CURRENT SITUATION. HOW IS STairs2chairs looking to improve that?
Clayton's new wheelchair will be 2" too big for our current door. He is excited because the wheelchair company came to the house recently to make a mold of him for the seat and he sat proud in it. They said it would likely take a month or two until completed. With the renovations, we will be able to wheel him right into the house instead of me having to carry him from the door to his room or his chair. I'm not getting any younger and while he is small, it is still awkward carrying him when he doesn't hold on well to whoever is lifting him.
EXPLAIN THE CHALLENGE OF TRYING TO GET INSURANCE TO PAY FOR NECESSITIES.
Dealing with insurance companies has been a continuous issue, as for some strange reason when a doctor writes the script for the chair, the insurance company representatives feel they can determine what is needed and what is not. The representatives have never met him, laid eyes on him, nor do they even have the ability to make an educated guess as to what he needs. I will never understand how those individuals can tell a doctor they are wrong.
DESCRIBE YOUR EXPERIENCE WORKING WITH STAIRS2CHAIRS SO FAR.
I absolutely love working with Stairs2Chairs knowing that you are an organization who understands. It is a comfort to know there is no judgment on what an individual needs to live life to the fullest. Truly amazing!