Kindergarten – Day 1                                        August 31, 2004

 Today was an amazing day.  Rose put on her new school clothes; a cute pink shirt with an elephant on the front with matching pink shorts, grabbed her back pack and sat on our front strop with her mom, waiting patiently and excitedly for the school bus to arrive.  A few minutes later the big yellow school bus pulled up to the end of our driveway and the door swung open.  Rose ran across our front yard to make the climb up those big steps through the open doors.  After stopping to pose for mom’s obligatory first day of school pictures Rose climbed into her seat to join a bus already filled with her fellow neighborhood kindergarteners, Rose looked out the window, her big smile framed by her new school hair cut.  She kept smiling as she waved goodbye to her mom and Cheryl returned the waves as the bus pulled away, barely able to contain her tears of joy.  This was truly an amazing day. 

Thrilled to be waiting for the bus ...

...  excited to be on the bus on the way to school

... and glad to be home.

Looking back across Rose’s life to our first feelings of an uncertain future we are very grateful to have this day to enjoy.  We are grateful for all the doctors and nurses that got Rose through the first few very difficult months of her life.  We are very grateful to Karen T and June R, Rose’s birth to 3 team that did so much to help Rose and to help us help Rose be ready for preschool on her third birthday.  We are grateful to all of Rose’s preschool therapists and teachers, Laurie Boscarino (PT), Anne Linden (OT), Denise Emma (SP), Diane Shovak (SP), Michelle Rozek (Teacher) and Cindy Deshais (Principal).  And we are very grateful for all the help and support we’ve received from our family and friends. 

But especially at times like this we are very grateful to all the families that have gone before us that have shown us that this life is possible.  This life seems so obvious now and so right but I know in a large part this is possible because we follow the positive example of all the pioneering families that have gone ahead of us.  For our fortunate selves this truth has been proven many times over. Of course Rose would live with her family but this was not always true a generation ago and less so and more exceptional two generations ago. 

After Rose was born my mom shared with me a story about her childhood that was a stark contrast to the open acceptance we are often blessed to enjoy today.  My mom had one cousin, Jack, whose family grew up just down the street from her and they shared many special childhood experiences.  They were as close as a brother and sister and I enjoyed the retelling of many of their experiences at family get-togethers.  But this story my mom had never mentioned before.  She was a woman that would often steer clear of controversy whenever possible to minimize hurt feelings.  Maybe that’s why she never mentioned this story or maybe, before Rose, there was nothing significant enough in our lives to spark this memory.

One day, back when Cheryl and I were getting too much credit for simply having had Rose, my mom shared this story to try to explain herself better, to give us some appreciation for the world that she was born into in 1926 and how far

“Things were a lot different when I was growing up. Back during World Was II, just before my Jack was going to be sent overseas his parents told him he had a brother that he hadn’t known about.  They told him he had some problem.  I’m not sure what they were.  He was mentally retarded and was institutionalized. He didn’t live with there family He may have had Down Syndrome.  I don’t know.  Jack had never known about him.  I had never known about him.  But that’s the way it was back then.  Children that had problems like that were put in institutions; it was thought to be for the good of the family.  They thought it would just be too hard on the family, on the parents, and on the children if they were to raise him in the home.”

“Jack did go to see him once before he went overseas.  He said he was good looking, blonde hair, kind of tall, I think, I can’t remember.  I don’t know if I ever knew.  But I don’t think Jack saw him after that.  That’s just the way it was.  Right or wrong, that’s what people did.”

The story of a family so close to mine that was never whole was hard to take but my mom’s lesson was clear.  The world has changed a lot and, by far, for the better.  And we are fortunate to live today, in our corner of the world, where it has become common place for families to stay together, to be whole.  My mom’s memory’s reach was long enough to remember back across the span of change.  And also to remind how very human  it is to accept the expected and how difficult it can be to accept the unexpected and choose to live a different life.  At first a few and then many more brave families resisted what was expected and instead chose to live what was right until eventually, slowly, inevitably what was right became what was expected. 

And now today, on Rose’s first day of kindergarten, our family takes our own small steps along the next path of resisting what is expected to live what is right.  Our goal is that Rose will have a fully inclusive school experience, from the moment she leaves our house and every step through her school day until that long yellow school bus rumbles to the end of our driveway and Rose hops down the stairs with her backpack carrying her homework and her heart full of stories. 

That’s our ideal and we, her parents, are the idealists.  There is a great team of teachers and therapists and a principal that are willing to listen and adapt, and work with Rose in an inclusive setting, applying their specific skills to the class room environment.  Rose benefits greatly from their extra support, there is no debate about that, but Rose also benefits tremendously from being submerged into the diverse world of characters that are her classmates.  We’ve seen many examples of Rose benefiting from interactions with her “non-disabled peer’s” but much more then that we’ve seen play dates, birthday parties, stories and more stories and friendships formed that are all intangible, invaluable experiences that make lives interesting and special. 

This is the heart of inclusion and the heart of the life that we all hope to lead.  We would not want to see Rose cut off from these experiences.  We know what we have to do, we understand the value of inclusion.  We’ve learned what path we have to follow from the families that have gone before us.  Certainly slow but steady progress has come.  Born in 1958, and going to school in the 1960’s and 1970’s, Cheryl and I had no first hand experience with inclusion, Publics schools were an exclusive club back then.  It was questionable whether a child like Rose would have even been allowed to attend public schools never mind be included in regular classrooms.  We are fortunate to live today.  Progress has been made.  Many young students with the support of families and schools and laws have shown Rose and us the way. 

The precedent has been demonstrated time and time again but not yet fully accepted.  Numerous studies have shown that children with disabilities do much better in an inclusive classroom, and all children do as well or better.  Studies have shown that the education of ‘non-disabled peers’ does not suffer.  A double negative that shows how tentative full acceptance still is.  A few studies have shown that ‘non-disabled peers’ do better when educated alongside their disabled peers, standard testing scores are measurably higher and, one would think, the benefit of a diverse classroom goes beyond any that can be measured by academic tests.  Acceptance of those that are different than us comes back on us seven times seven with the positive assurance that our own differences will be accepted.  This in a rich invaluable lesson and reward wrapped together as one. 

Our mission as Rose’s parents is to follow this ideal until long after it becomes an accepted practice,  Beyond our own doubts of how Rose might progress day to day in the tangible ways measured by tests and evaluations, beyond concerns of educators and therapists to compromise their direct access to Rose and their thoughtful wishes to help Rose achieve as close to the norm as possible, beyond the tangible is the overarching ideal of the intangible need to have Rose grow up belonging to and contributing to her community.  If we can accomplish that ideal then we will have succeeded as her parents and as her school.  And if Rose can help show the way to other students that follow her than we will have begun to, in our own small way, to pay back families and students that have gone before us and made our whole family’s life possible.  Thank you.