For his first five years in public education, Simon attended a self-contained classroom in the school across town with other students who were labeled with “intellectual disabilities.” Every school day, a bus designated for Simon and his classmates pulled into Simon’s driveway and delivered him to school, where he was met by his special education assistant and escorted to his self-contained classroom. When he wasn’t working on “life skills” with his class, Simon joined his non-disabled peers for recess on the playground and during music class. At the end of the school day, he returned home on the bus and spent his afternoon watching TV or playing with his brother and sister.
Picture in your mind a lush, green common in the middle of a small country town. A family strolls along peacefully enjoying the quiet, the calm, the gentleness. They come upon a beautiful gazebo and step inside. Suddenly, the peace and stillness are broken. Bright lights, blaring music, and confusion rush in and the family is caught in the middle of chaos. To their surprise, they’ve just become the grand marshals in a parade they never planned on attending.
Off in the distance, the parade begins. The marchers include many of the people who will be involved for the next twenty years with the family and their child with a disability. The band arrives first, brimming with medical specialists all decked out in their uniforms. In the front is the brass section with pediatricians, an endocrinologist, a pulmonologist, as well as the emergency room doctors and nurses. Next comes the percussion section with many orthopedists, neurologists, opthalmologists, and others. They are trying so hard to keep the beat, but they sometimes hear the sound of a different drummer. They pass by the grand marshals, nod, and then move on.
Following closely behind are teams representing each year of the child’s life. The first is the early intervention program with many people weaving in and out of formation—therapists, teachers, and nurses. Some are wonderfully matched with the family and are in sync with the music; others have trouble keeping in step. Many more teams pass by—one for every year in preschool, elementary, middle, and high school. Some of the marchers play on the team for a year or two. Others remain for a decade. All in all, more than 100 paraders march past! Each one differs in formation and what music they should play. Each leaves an individual offering—ideas, papers, goals, and objectives—at the feet of the grand marshals and then moves on.
Next come the cheering supporters from the side of the road. From lab technicians to state consultants; from family support staff; to pharmacists and the cafeteria woman who blends the hot lunch; the bus driver and custodian—the numbers swell. They shout and offer information as they pass the grand marshals; some even march along with the parade for awhile.
Finally, the beautiful antique cars, all polished and shiny arrive. Riding graciously in each car is a wonderful and talented person who has made a real difference in the lives of this family. There is the therapist who knows just what to do and say, and skillfully earns the family’s trust and respect; the social worker who is the link between the family and several teams, and who knows when to call, when to visit, and when to have a real heart to heart; the doctor who sometimes has difficult issues to discuss but talks with kindness and honesty, and who gives hopeful words at a time when no one else does; the consultants who push and challenge to create change and acceptance in our world and beyond; and finally, the classroom teacher and inclusion facilitator whose flexibility and bright spirits make everything happen so easily at school. These are tremendously knowledgeable and sensitive people who create relationships based on truth, hopefulness, and a willingness to work together to create a world where each belong. They are not afraid of becoming authentic partners with the family.
The grand marshals realize that they have their work cut out as they strive to:
• pull information together from the many marchers and determine what is really essential for their family
• stay open to new ideas, information, and challenges • stretch themselves into new and sometimes uncomfortable territory if it helps them reach their dreams of being fully welcomed, included, and supported
• stay strong as a family in spite of pulls and pushes on their time, energy, and spirits.
As they peer down the road, the family discovers more music, new marchers, and different parades on the way. The marchers in the distance are shapeless and formless, and the family sometimes worries about those shadowy figures of the future. They hope they have the strength, the knowledge, and the vision to direct the parades of the future…and the ongoing support of those wonderful people in the antique cars who have encouraged and supported a vision of a world where all families are welcomed and supported in their local schools, general education classrooms, and communities – every step of the way.
Since Ann’s career began as an occupational therapist, she has enjoyed supporting young children, their families and providers and working to provide supports and services that are family-centered. Her interests in inclusive education, autism, developmental disabilities, and leadership have been fueled by these connections and passions. Ensuring NH has a strong Leadership program, increasing the use of person-centered planning, organizing and designing responsive supports and systems, and pre-service and continuing education are personal priorities. Through the IOD, Ann is the Coordinator of the NH Leadership Series. She also coordinates off-site clinical placements for the NH LEND program and is their CORE Family Faculty member, and she supports the GEMSS project through NEGC. She has worked with many community, state, country and governmental agencies in the areas of systems change, medical home, positive behavioral supports, family-centered care, autism and developmental disabilities. She has recently traveled to Belarus to teach parents and professionals about inclusive education and supporting parents through the International Child Fund project. Ann is a registered and licensed Occupational Therapist (OTR/L) with the National Board for Certification in Occupational Therapy and the State of New Hampshire. As the parent of a wonderful daughter who had disabilities and who is now deceased, Ann applies her parenting experience to the Institute’s work in education, inclusion, medical and family support.
I like to think of the SWIFT features as the “Top 10 ways to make your school fully inclusive,” and SWIFT-FIG is your guide for understanding those features.
Taking a step back to watch her from the sidelines, I was reminded that she will waiver, she will fall, and sometimes she may crash and bleed a little, but that’s ok. That’s the story of life—finding a balance between the highs and lows.
Parker reminded me of the power teachers have to make or break a student. Positive teacher-student relationships matter. I am grateful Parker taught me this lesson.
Without a doubt, my children’s educational experiences contributed to their positive post-school outcomes. And, I’m certain that the engaged and trusting relationship that our family experienced with our school community helped pave their ways.
For many of us, some of our best childhood memories involve summer camp. With a little preparation, the right supports, and inclusive attitudes, all kids can enjoy a summer camp experience.
Sometimes you hear an adult talk about a teacher or an adult that changed their life. I know that Mrs. Preto is that for Sabrina.
We wanted the best school for our child and we found it, because inclusion is much deeper than facilities and programs. Inclusion involves everyone looking beyond what children can’t do based on their circumstances to see instead what they CAN do.
Congratulations! My daughter Rachel is going to be in your general education class this year. I suspect that you haven’t had a student with Down syndrome in your general education class before. I suspect you are a little nervous, and you might need some information so I wanted to share. Regardless of your faith persuasion, I hope it brings you confidence to know that we have been praying for you since before Rachel was born!
As you prepare to welcome Rachel and many other students, I want to remind you that you are not alone. While it is your responsibility to help educate Rachel, you are fortunate that you have an outstanding resource teacher and paraprofessionals to give support. Still, she is a part of your class. Yes, she has Down syndrome but she is in your class to learn and that is not the resource teacher or paraprofessional’s sole responsibility. I hope you do not see Rachel as a burden but as a curious student who will work very hard to do her best and who will learn differently than some of your other students. Her best will not look like most of the other students’ and you won’t be there when we are watching the Olympics and she says “Zimbabwe is in Africa. I learned that in school.” You will probably never know everything she learns from you. We know she won’t learn exactly what the other students do, but she will learn. She will not regurgitate things on a test like some of your other students. She’ll need her homework and test presented in a certain way to find out what she knows. Then again, most of us have different ways of learning.
Don’t panic about her standardized test scores bringing down your numbers. Though I am not a fan of standardized tests, even after the passage of IDEA we had years of many educators not teaching curriculum to our students with special needs. So the pendulum swung a little too far the other way. That isn’t your fault, but it isn’t Rachel’s fault either. Please remember to give Rachel a little extra time to process things. The 10-second rule is a good one. Give her 10 seconds to think about the first question before you move on to the next one. Please communicate with us. If there is something good or something of concern or something you just aren’t sure about, come to us and we can help. Come sooner instead of later.
Then, I want you to know that you are lucky to have me as a parent to work with you. There will be days you won’t believe that. There will be days you are certain that I am possessed, but I do what I need to do to see to it that my daughter gets what she needs. A long time ago I was told that Rachel couldn’t be in the general education kindergarten because she couldn’t “function” in a general education classroom. We demanded that she be fully included and now I just say, “The proof is in the product.” That is just one of my battle scars. I have a lot of scars that you don’t know about. Maybe that will help you to understand why I am a self-proclaimed high maintenance mom. I am not apologizing for that. I will also be your biggest fan and supporter. I will bring you special treats, write letters of support for you, ask legislature to give you more money, nominate you for awards and so forth. First and foremost, I will always be advocating for my daughter to learn and helping you in any way I can.
Rachel is fiercely independent. Her independence is a gift and a curse. Her independence will help her in life but it also makes her not want to have help. No matter how much she loves the para’s, she really would prefer they go away and has told them so from time to time. Honestly, she doesn’t want a paraprofessional anywhere near her because she is a 13-year-old diva girl who wants to be like everyone else. She wants to have friends. She is boy crazy. She wants to be included. She knows that there are some things at school that are very hard for her. She wishes it wasn’t that way, but it is. She will tell you that her brain is full or tired and I am guessing that is true sometimes. A lot of what she does is tied to that need to be one of the girls. She is a pleaser and usually will not intentionally try to make you irritable. She will also tell you what she thinks you want to hear in order to be a pleaser. Rachel is also funny, loving, loyal, and confident. She has great stage presence and will tell you so.
Our family has high expectations so we expect Rachel to do her best. We expect her to learn. We know that some things are hard for her but that is life. Life is hard for all of us sometimes, and we don’t have room for pity. We want her to grow up to be independent. She wants to be a teacher, get married, and live in a pink house. We want that for her too and we know that what we do now impacts that.
We are anticipating a great year in 7th grade. I want to thank you for investing your life in education. I believe that teaching is the highest of calls. We have been blessed with the best teachers I can imagine. If you could speak to most of them preschool through today, almost every one one of them would say, “I learned more from Rachel than she did from me.” They would say that may sound cliché but they are better teachers to all students and better human beings because they had my Rachel in their class. In May, I suspect you will be able to say that, too.
– Jawanda Mast
I am TheSassySouthernGal, a misplaced Southern gal living in the Midwest. I grew up in rural Arkansas and I have a beautiful “SassyGal in training” named Rachel who happens to have Down syndrome. I love to share stories from my life and our lives. Come along on my journey and we’ll share some stories, some tears and a lot of fun! Soon you will see why I am TheSassySouthernGal!