Welcome everyone-Thank you committee members, volunteers, sponsors-and of course all of you Walkers! I’m honored to speak today to kick off this year’s Buddy Walk. Our theme at the Buddy walk is that everybody belongs! This sounds nice but it is not a given in real life.
Raising my son Brian has been the biggest Challenge and the biggest Reward of my life. He has taught me the value of fighting for what you believe in. Because I have always had a vision of Brian being able to live as full and complete life as he possible could. Without my own or others limitations placed on what he could or couldn’t achieve- I believed that I needed to hold the bar up high and expect Brian to have or be whoever he wanted. I have found that with that beautiful vision, inclusion and proper supports Brian is who he is today.
I am always so impressed by everything Brian has achieved, from zip lining in Costa Rica with his junior high class trip, to being on stage for Theater Adventure Program as Peter Pan this summer, to NEYT’s holiday show last Christmas an umpa lumpa-and practicing and practicing to get it just right, to being part of his Windham Wizards basketball team, learning how to “block” and win gold medals at the Burlington Special Olympics, to being such a sweet and kind brother to his siblings, always willing to share or give whatever he had. Finally for his innate ability to be “in tune” to other people’s feelings and needs since he was little. This confident, self determined young man didn’t get to be here today without a lot of hard work and struggle. His story is what I’d like to share with you today. What I believe inclusion has meant for Brian and how it has helped to shape him into the young adult you see.
Brian has been my greatest teacher-when he decides he doesn’t want to do something- he just doesn’t do it. If any of you have ever hit that wall of determined refusal-you’ll know my frustration! So in 2nd grade Brian let me know that school was no longer working for him by refusing to get out of the car. But this “thing” that looked like a behavioral problem turned out to be a great lesson in really listening for Brian’s needs. We needed to take a closer look at his school day to see what parts were working for him and which parts were not. We had moved to Vermont the summer before Brian entered kindergarten – it was the only “state” to get an A for inclusion. But come to find out – it didn’t necessarily mean they did it better-it just meant that it was so rural that they didn’t have enough special needs children to create self contained special education classrooms – like they do in Many other states. But it did mean that the staff and special educators were very willing to “learn” how to fully include Brian and provide any extra help that Brian needed to be successfully immersed within his school. Luckily I’d learned about a man named Craig Barringer- from the VT I-Team – after attending a Parent-to- Parent conference and he soon came into our life to help Brian be mainstreamed into the regular Ed classrooms successfully.
Throughout Brian’s education we needed to figure out what made Brian tick and how he best learns. We realized that the academics weren’t taught in a way that Brian could easily learn them. After using the COACH process, choosing outcomes and accommodations for children with special needs, we set the priorities I wanted for Brian; they were Safety in his home and around town, Friendships, and Community. Then we looked at what he loved most at that age, food, music and people. How can we combine this into a meaningful educational plan? As I talk about “we” I want to make sure I mention that Brian and I have always been gifted with many “angels” to help us on our way; from Maggie Miller the early interventionist who came to our home from birth-3, Carol Neff Brian’s 1:1 in his elementary years, Lisa Power his 6-12th grade teacher, and Anna now- who supports Brian’s independent life skills program. Having that support person who works 1:1 with Brian can’t be praised enough.
Lots of up front work went into making 3/4th grade successful. As I reflect back upon these years I can see how we’d been preparing him for adult life and his job at Vt Country Deli-even back then. His first job at school was making & selling fruit smoothies to his classmates, staff and teachers. Along with boosting his self esteem, this activity taught him math, reading, shopping, following directions and language in a fun and engaging way. He was also in charge of the birthday basket, delivering cards throughout the school building. This helped everyone to know him and not be afraid, he wasn’t shut up in a special classroom where he might be seen but not included-the way I remember the children with disabilities from my own childhood. He was fully integrated into his school and the unexpected benefit for Brian was being invited on play dates and to birthday parties. Brian still needed direct instruction with social and life skills, but they were embedded in meaningful, real life activities. Brian was fully included within his school, family and community. I know from experience that I can handle Brian’s special needs and be his advocate, but I can’t protect him from loneliness or isolation and I was determined not to let that happen. That was my motivation to make sure he had every opportunity in school to prepare him for his adult life.
We moved from Chester to Marlboro and I was nervous about the transition but since so much focus had been placed on meaningful friendships it really paid off – he was accepted and liked by his peers and soon had many authentic friendships. I remember all of his 5/6th grade class came to his b-day party! They were so happy to be at his house, playing games, and eating pizza and cake. Brian was just beaming! At Marlboro Elementary Brian continued his life skilled based learning by developing Pizza day, he took the orders from each classroom, phoned in the order, collected and counted the money and delivered the right amount of pizza to each room. Always practicing his skills in a supported, safe environment while being included with the regular ed students, he might be doing something different than the rest of the classroom but he was always contributing and sharing as a valued member of the classroom with his peers. This inclusion became possible because of the countless hours of up front work by Brian’s team, monthly and weekly planning and individualized instruction plans written so that Brian’s learning styles were met on a daily basis.
Junior High was also a very successful time in Brian’s life because he was still immersed in a small, supportive school-with community dances, all school sing and many hands-on learning opportunities and great experiential trips. I remember that the JH students needed to learn how to perform a sword dance for the Holiday show, and the music teacher was leery to say the least, but the classmates wanted Brian to be part of it. They gave up recess and part of lunch time for extra practice so Brian could be successful. The trick for Brian’s learning is to practice, practice, and practice some more! He did great at the performance and felt so good about himself. WE say that inclusion is for the disabled child, but my experience is that our “typically” developing children get so much from the experience. Inclusion helps to form compassion and empathy for those different than themselves, as well as understanding about disabilities, the development of friendships and interpersonal skills and it teaches the value of trying hard to be your best and of developing patience. Those classmates of Brian also had a glow about themselves the evening of the show and I would guess that it came from helping Brian to be successful!
As you can imagine High School became a much harder place for Brian to be included with his peers-mostly all academic based, with block scheduling, doesn’t leave much room for a kiddo like Brian. Many struggles took place over these years-Brian and I always seeking the places where he fits in, places where he is welcomed and appreciated for who he is. First we tried a few “programs” and again faced the one-size doesn’t fit all model. Brian’s program had to include the skills he’d need to be independent as a young adult.
With lots of meetings and advocating A specialized instruction design started to take place (partly within the community) instead of all within the HS life ed classrooms-where many ditto sheets for practice are the norm. Brian had proven to us over the years that it was only hands on meaningful applications of learning that worked best for him. As his mom I also sought out expansion into the community, like Theater Adventure Program – where Brian could shine as an individual. The teachers and mentors working there knew the importance of waiting for “the Pause” allowing Brian time to answer by giving him enough space to respond. Brian gets everything that is going on around him but it takes a huge amount of effort for him to reply verbally. Speech has been one of Brian’s Biggest hurdles and most frustrating for me and him. We have augmented his speech since he was little, starting with signing, using pictures and words, then a cheap talk 8 in elementary school to help facilitate communication. And eventually to the speech device he currently uses, called a dynavox-which is also a lap top computer. Thankfully technology has grown as Brian has grown and he is better at it than I am!
As Brian progressed in High School my focus for him became apparent, he would need transition planning to be as independent as possible before HS graduation. The services available after HS are pretty scarce so the upfront work would need to happen now. Typically, the high school institution is not a flexible enough setting to reach the many important skills needed for having an independent future for our children with varying abilities. The emphasis needed to be placed on community involvement, independent living skills, employment, and vocational training. The “soft skills” needed are often lagging because the emphasis of most schools are academic and not life skills. These soft skills need direct attention if our children with disabilities are to maintain paid employment positions, have friends, navigate their community safely and learn how to take care of themselves physically and mentally. Specifically I am speaking of appropriate social skills, timeliness, working well with others, presenting themselves well, along with, good work and play attitudes. These are discrete skills that many of our students need lots of repetition and practice in.
So Brian’s individualized transition plan was written to include these important factors. Luckily Brian’s plans since elementary school included and connected to real-life, meaningful and hands on activities, not ditto sheets or state assessment tests, so Brian had the background knowledge needed to apply the skills he’d been training in for real life applications. He was ready to learn how to manage money using a bank debit card, make deposits and pay for purchases in a variety of settings. He’d budget for his food, bus tokens and free time activities, like movies, bowling, and going out to eat! He also tried a variety of jobs, learned many new skills, but we always came back to his passion, food and people!
On Brian’s 16th b-day I applied for vocation rehabilitation services and they worked with Brian. One summer he had a job trial at Burger King. He was able to master some skills there, but they had a bias of his disability and kept him in that limiting box, he can sweep or wash tables, but not work with the customers or the food. The next school year Brian started working at Dottie’s and really expanded his independent work skills, weighing and labeling food, stocking shelves, breaking down boxes and recycling. By his junior year we expanded his goals by adding in learning to ride public transportation and how to cross the many streets of Brattleboro safely. That same year Brian was given the opportunity of a job trial at Vt Country Deli in the bakery. Eventually this grew into a meaningful job that he gets paid to do just like any other employee. This has been a beautiful fit for Brian, combining his love of food with a wonderful family environment. I hear it’s a sight to see when they’re singing to the Beatles, telling jokes and scooping cookies together as a Team! But for me it’s all about Brian having found a place where he is accepted and valued for being who he is and doing a job as well as anyone else!
So the last BIG transition for Brian was moving into his own apartment at age 18 and learning how to manage all that this involved. Luckily – We have a small, one bedroom cabin attached to our family home – that we turned over to Brian and it has become the basis of his community based life skills program. He no longer attends a traditional HS. Because of that he has the opportunity to learn by trial and error what works for him at home and in the community to become as independent as possible. He has systems in place for shopping, cooking his recipes for breakfast and lunch, doing his dishes and laundry, cleaning the bathroom, waking up and taking the Moover Bus in for work at 7:30am three days a week…….My vision for Brian has come true beyond my wildest expectations. He has many friends! Brian attends the weekly peer group at Families First and many of these friends are involved at Theater adventure program and Special Olympics Basketball. Brian continues to take therapeutic horseback riding lessons at Centered Connections with Gail and is now taking swimming lessons at The Colonial Pool & Spa both of which can only occur financially because of the generosity of The Francis Hicks Fund. His week days and evenings are full of people and activities he loves and who love him back. Brian has brought joy and meaning in my life and so many lives that he touches and I am so Proud to be his Mom!