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  • Writer's pictureJadene Sloan Ransdell

03 Finding a Meaningful Life

Jadene Sloan Ransdell

Originally published October 6, 2014

In my last post, I introduced you to young Matt. There is still a lot left unsaid and maybe that will be part of other posts (or maybe a book, as some friends are encouraging me to write). As I type I find many bits and pieces, when put together, create our wonderful man. There is a picture floating around on Facebook that says something to the effect that the events of our past build who we are today. I believe that to be true. One of the hardest lessons I learned...and sometimes still struggle to remember... is that everything happens at the right time, in the right place in our lives. If we are open and don't resist we can learn important life lessons. It is one of the biggest gifts I have received sharing my life with Matt.

The year before Matt left public school we had an opportunity to develop a P.A.T.H. for him. P.A.T.H. is a planning tool that was originally developed by Inclusion Press for people with disabilities to see a promising future; in fact, the letters stand for "P" Planning, "A" Alternative, "T" Tomorrows with "H" Hope. Matt had been labeled Profoundly Mentally Handicapped by the education system. At the time he left school, there wasn't much offered for him. He could attend a day program and live in a group home...neither of which seemed to be an appropriate fit for him.

I had noticed that the problems that were reported to the psychiatrist seemed to all happen when he was with a group of kids. He always did well at home with just the four of us. I also noticed that the things Matt did at school weren't necessarily the kinds of activities he enjoyed. In his "senior" year (translate that to the year he turned 22) I insisted that he be allowed to participate in the school gardening program. At first, the principal and teachers were sure it wouldn't work and was a waste of time. Besides, no one at Matt's level would be in the local ARC horticulture program or, for safety reasons, be hired as part of their yard work crew. My response, "How many of you like to garden? How many of you find it relaxing and just something fun to do? How many of you want a career in gardening? Why can't this school expose all the kids to the joy of digging in the dirt (sand, in our case), the wonder of watching a seed grow and seeing their flowers bloom?" The next school year all of the kids in Matt's class were part of the horticulture class and they loved it.

So back to the P.A.T.H. One afternoon, in the spring of his 21st year, Joe and I, one of our dearest friends, Christa, Ted, an aide from Matt's classroom, and our P.A.T.H. facilitator, Vicky, started a journey. Matt sat on the sofa with his legs and feet pulled up and crossed in front of him. He had a small stick, that he collected from the yard, in one hand and waved it rhythmically in front of his face. He said not a word. Vicky encouraged us to think about the most positive life Matt could have when he left school. I had talked to a number of people about what I wanted for Matt, and yet at that moment, I couldn't speak. Something about putting the dreams on paper made them difficult to say out loud. After some uncomfortably quiet moments, I broke the silence saying, "In the future, Matt will have all the pizza he wants to eat, whenever he wants it." Everyone laughed and the ice was broken; pieces to the dreams we had for Matt were contributed by all of us. That is, all but Matt. He sat, saying nothing throughout the two hours it had taken us. Vicky reviewed our work and told Matt that we thought he should have a home of his own with a flower garden, and eat as much pizza as he wanted. Suddenly, he raised his hands above his head and shook them like a fan at a football game whose team just made the winning touchdown. I was certain then that I really did know Matt and understood what he wanted in his life. It was an extremely validating experience for me.

A couple of days later, Matt was taking a bath. I tried to get him to wash his hair. I put a little shampoo on the top of his head and said, "Matt, wash your hair," and showed him what I wanted him to do. He sat with his hands in the water and looked at me as if he didn't have a clue what I had just said. This went on for several repetitions, when in desperation, I said, "Matt, if you ever want to leave home and not have Momma always telling you what to do, you need to wash your own hair." That did it and he shampooed his hair for the very first time at age 21! Another validation that the P.A.T.H. captured Matt's dream for his future.

Matt left public school in 1996. For over a year, his father and I paid privately so that he could attend a community program two days a week. He wasn't especially happy there, but it was all we could do at the time. The program did allow Matt to get outside some and on those days, he seemed happiest. I was still dreaming of the perfect day for Matt. When he finally received funding through the Home and Community Based Medicaid Waiver, we were ecstatic! With that resource, he would be able to live in a home of his own and do something he enjoyed five days a week. It had been nearly a year and a half since he left public school and he seemed happy to be looking for his first home. We found an agency who hired staff to live with Matt and his roommate. Of course, when he moved out of our home, I missed him terribly. But I knew that Matt deserved to grow up and lead his own life, just as his brother had more than five years earlier.

Finding something for Matt to do during the day wasn't easy. Over the years, we worked with several providers and had staff that were to take Matt out to explore activities he might enjoy. Florida has had a supported employment program for persons with developmental disabilities for many years. Unfortunately, Matt just wasn't a good fit for that because he needed someone to be with him when he was out and away from his home. So we tried all sorts of combinations of activities and more staff than was good for him.

For a period of about a year we hired our daughter-in-law, Christina, to work with Matt at the barn where she kept her horses. He so enjoyed that and you could see the pride in his face. He learned to follow simple instructions and do some of the chores related to caring for horses. His favorite jobs were cleaning the water buckets, sweeping the barn and throwing hay to the horses. He was pretty good at pushing a wheelbarrow full of stall muck, too. Unfortunately, that experience ended when Michael and Christina moved more than an hour north of us. We spent years looking for something that gave him that same sense of pride, and sadly weren't very successful.

Matt has come home to live with us for short periods of time when there were problems with staffing his home. It was during one of those times, about three years ago, that his companion asked Joe and me if we would mind if Matt tried volunteering at the Bay Pines VA Hospital. Joe and I were intrigued and gave her the go ahead to try it out and see if it was a good experience for him. It was the best thing we could have done. Matt loves working with his "soldier men" and the men and women appreciate seeing him. We have been told by the medical staff and other volunteers what a wonderful asset he is. At his first awards banquet, a social worker told us that he had made a huge difference in the life of one veteran. This man rarely interacted with others. However, when Matt came in to see him, he talked to Matt and actually got a smile on his face.

Matt is always eager to go to work. Every morning, he asks his in-home support staff and friend, Sandie, if it is a work day, by signing "work" and pointing to his uniform shirt. He works five days each week at the VA hospital. He would go everyday if he could.

Congressman C.W. "Bill" Young formally thanked Matt for his service to the veterans. Our beautiful boy is forever honored in the May 20, 2013 Congressional Record. A copy of the text is below.

Matt has finally made a life that is beautiful and very meaningful to him. He rents a home in the community and shares it with the family he has made. Sandie and Kandie are his house-mates. They may work for him but they are more than staff. They are family in the truest sense of the word! Matt works by giving back to our veterans. It is the way he serves his country, just as his dad and brother have. For these reasons and others I am saddened as I watch what aging with Down syndrome is doing to his life.

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