"You don't have to see the whole staircase, just take the first step"
Ten years ago, Moise started school in an Early Childhood classroom at Tremont Elementary. Since that day he has grown and blossomed under the careful teaching of the faculty - teachers, aides, therapists and administration- of Tremont Schools. He has learned things that I never imagined he could learn. He has been loved and accepted as a part of this school and this beautiful community in which we live.
Through the years, my heart has been warmed over and over by fellow students who see him around town and rush to greet him. I love hearing exclamations of "There's Moise" or "Hey Mo" or "Give me knuckles, Mo." I love that the children aren't afraid to touch the boy in the wheelchair, the boy that makes strange sounds, and laughs when nothing's funny. Over the years, teachers have shared countless stories of children who bicker over who gets to sit by Moise or push his wheelchair. There are classmates who will give up their lunch time with peers to eat with Moise and his less than proper table etiquette. Yesterday his communication notebook came home with a note that said the kids in his class were telling about their favorite things about Mo--his smile, his kindness, his love, his sign language, his "knucks" and his laugh. Today's notebook said "Mo won a race with his bike today and his name was announced over the loud speaker." The sentence twisted my heart into a happy, painful knot because I know, beyond a doubt, that the only way Moise won any kind of race, even on his bike, is if the other children graciously allowed him to be victorious, a beautiful testimony to the compassion of his classmates. These are young people who know that sometimes there are more important things than winning.
Today was the last day of Moise's seventh grade year. It was also the last day that Moise will attend Tremont Schools.
It grieves my heart some, because Tremont feels so incredibly safe. There was comfort and security in knowing that there was always someone that I know well around every corner in the Tremont schools. I know also that our little school is filled with young people, those who have grown with him, who would fight for Moise if need be. This little village that we call home has been an intricate part of Moise's growing and developing.
I knew that this day would come eventually. Every spring, Moise's educational team and I gather around a table to discuss goals for his upcoming year. Many years we have toured other special ed classrooms to see if there is one out there that might better suit him. And every year, when it's all said and done, we all (teachers and therapists, Jim and I) come to the conclusion that Tremont is the best place for him. Until this year.
The past two years have been rough for Moise on so many levels. The vision loss has further complicated an already complicated life. Moise has adapted somewhat to the vision loss, but the fact remains that he is both deaf and blind, in addition to being wheelchair bound. We've pushed hard from an academic perspective, always blown away by how brilliant he is. But he has plateaued in this area. He continues to learn, but as academic concepts become more abstract, they become increasingly difficult for him to grasp.
He's fourteen and in the world of special needs fourteen is the magical age at which we begin to prepare our kids for transitioning into adulthood. We start asking the questions, "what will he do when he is no longer able to go to school?" "How are we preparing him to function in life?"
Tremont, population 2,200, does not have a large number of children with severe or profound disabilities and, as a result, does not have a functional life skills program that is equipped to meet Moise's wide range of needs. In March we began researching schools in our area that have great life skills programs. There were three school districts that looked like possibilities. However, upon contacting these schools, we were told that they didn't have the resources to meet his needs. The deaf/blind component is a tricky one and we're finding that most schools, at least those around here, really don't know how or aren't willing to handle it. It's a sad day when your child is too special for the special ed programs.
There is a school in a nearby community that is designed specifically for children with severe and profound disabilities. Schramm school has been in operation for many years and they have an excellent life skills set up. We have toured Schramm before and there have always been aspects of the program that were undesirable. Our greatest concern about a school like this was that Moise would be underestimated and therefore limited in his progress. But they are restructuring their program this year and after much deliberation we have decided to try it for next school year. I asked the director if Schramm has had any other deaf/blind students and the answer was "No." There have been some deaf and some blind but not both. But there are hearing and vision consultants that come regularly to Tremont to work extensively with Moise and both of their offices are in the Schramm school. They are fully aware of what he is capable of and we are confident that they will guide the teachers in dealing with his lack of vision and hearing. Most importantly, Schramm is a life skills facility. It is equipped with kitchen and laundry where students can learn basic housekeeping skills. There will be many outings, which will prepare him for better functioning in public. He will also be assigned a job coach who will help prepare him for getting a job in the future. The school has a therapy pool, which will be excellent, as swimming is really his only means of exercise. In a world where there is a great surge toward inclusion, we are a taking a step away from it in favor of striving for greater function.
I am beyond grateful for the years that Moise was able to attend Tremont. It has been so sweet to have him in the same school that our older children grew up in. The school and our community have given much to him. I believe that he, in turn, has given back to Tremont. He has been a great teacher to many, adults and children alike. He teaches things that can't be found in the text books or on line. He has been the greatest example of perseverance that many will ever see. He is living proof that life isn't always fair but even in the midst of unfairness, we must never, ever give up. There is something about Moise that causes others to reach down inside of themselves and find all of the goodness that is there. He puts priorities in perspective and helps us realize the truly important things in life. Most importantly, Moise has taught many of the students and faculty of Tremont about acceptance and a love that knows no limits.
God is good, all the time.