ADA Disability Awareness

I just love this facebook post that was posted by Ben's speech teacher, Jennifer Putnam. We are so blessed to be surrounded by so many loving, kind, and talented people.

"July is ADA disability awareness month, in honor of the ADA national law signed into effect in July of 1990. It’s important to be aware of those around us who have disabilities and how to include them in our communities. God expects us to look out for people who are disabled and those who are different because they are made in his image too. His image is that of a human being no matter how a body functions or looks. This year I decided to highlight one of my clients, with his permission of course. This is my friend Ben. I have known and worked with Ben since he was 3 years old. He is almost 19 now. Ben has a condition called Ataxia Telengectasia (AT for short). This is a very rare neurological, genetic disease and usually takes the life of children with it by early adulthood. Most children are in wheelchairs by their teen years.

Not Ben…..he and his mother have done everything they can to make sure Ben was given every opportunity to work through the problems of AT or learn to compensate for them. Ben has overcome so much to be where he is at with AT. Some of things he has had to deal with are swallowing problems, dysarthria (hard to understand speech), ataxia in his eyes, respiratory and lung problems, extreme fatigue and unsteady walking.

This is just a fraction of what Ben deals with, but instead of giving up and not trying, Ben has built his body strength and stamina to the point he is able to take care of the animals on his family’s farm while his father has been sick with cancer. Ben drives a 4 wheeler with ease. He has a motorized bike to help him conserve energy if he needs to and he lifts weights everyday that he can. Ben overcame some of his feeding problems by having tube feedings through his stomach. This allowed him to gain weight and avoid burning calories unnecessarily. Ben eats orally too but makes sure he is careful when drinking liquids as they are harder for him to drink.

The coolest thing that recently happened was Ben was able to get Botox in his some of salivary glands to lessen the amount of saliva he makes. He has struggled with drooling for a very long time. Because of his disease Ben doesn’t “feel” the salvia. Now he has a way to manage this problem. The drooling was especially hard for Ben socially, but he is so excited to have a chance to work before his service mission for about 6 months without having that problem. He is ready to develop and grow outside of working at his family’s feed store where he has worked for several years.

In 25 years of working I have never met someone like Ben. His IQ is most definitely above average and he is the hardest working 18 year old I know. He never gives up! He won’t stop with his goals and his sweet smile melts everyone’s heart. If you can’t understand his speech……tell him. Ben will make his sentences shorter or over-pronounce syllables in words. Just let him know. He can also write down a message if needed.

I’ve been honored to work with Ben for most of his life. He is fearless and dedicated in every aspect of his life. He doesn’t complain about his lot in life and will do amazing things in this world as an adult. He has a heart of gold and needs others to give him a chance to grow. I fully expect one day to receive a wedding invitation from him and see him live a purposeful and productive life. Please watch out for the people like Ben in your communities and recognize they have many things to contribute that we might not realize. Sometimes the best gifts come in different packages "

Update on Ben: He just started a job working at our local thrift store (Deseret Industries) and will be working there until he leaves to serve a service mission in Provo, UT for the Church of Jesus Christ of Latter Day Saints in January. All of his older brothers have served full-time missions and this is something that is very important to Ben. I am so grateful for family that is willing to help make this happen and for how far the church has come in making these opportunities available to all people who have the desire to serve.