Our Unique Story
Nearly 100 years ago, my Nana’s sixth and last sibling was born. Rudolfo was a baby with a difference; he was born with Down syndrome. He was immediately labeled “mongoloid” and “imbecile.”
His mother, my great-Nana Michelena, went against the advice of doctors and her family and decided to bring her new baby, “Uncle Rudy,” home.
Michelena was advised to institutionalize Rudy and forget he was ever born; she was told he would never amount to anything anyway. Michelena refused to listen and Rudy did live at home with his family until he was a teenager, but because Michelena did not have access to all the resources now available to people with disabilities and their families — and she was first-generation Italian — she was unable to give Rudy what he needed. Back then, no one knew how to help her, either. The family lived on the third floor of a three-family house, and one day Rudy threw a pair of scissors down to the street from the third floor. Michelena became afraid that he would eventually hurt somebody — or do harm to himself.
She felt the best she could do to protect him was to do what she was initially advised to do when Rudy was born; put him in an institution. Every time my Nana (Michelena’s daughter and Rudy’s sister) recounted that story to me, she would cry and tell me that a piece of her mother died the day she “put Rudy away.”
While the family visited Rudy religiously, there was an emptiness in all their hearts.
Michelena’s Story Becomes Even More Personal
In June 2001 our third child was born. Prior to the birth of our first child, my husband Rob and I decided against pre-natal testing because for us, and this is a personal decision, there was no option were we to find out about complications in the development of any of our babies. Our first son, Douglas, was born with pulmonary stenosis, a congenital heart defect that was corrected at two days of age with a cardiac catheterization, and is absolutely fine as a result. We were advised that for any subsequent pregnancies, a level three ultrasound and fetal echocardiogram at 18 weeks gestation would be required, so that there could be a cardiac team on standby at birth.
Any baby we had could have a five percent chance of having a heart defect as benign as Douglas’ — or something more complicated. Our second child Alec was born just 364 days after Douglas with no heart defect — but developed SVT as a teenager, which was corrected with a cardiac ablation.
Our daughter Samantha Rose was born on June 12, 2001 at Beth Israel Hospital in Boston, MA. She came into this world a wide eyed, beautiful, sweet little bundle, all of 7 pounds 4 ounces. We were so thrilled to add a little girl to our family. With our two older sons Douglas (2 1/2) and Alec (1 1/2), our family was complete.
What We Soon Learned About Our Baby’s Health
Prenatal testing, which included level three ultrasound and fetal echo cardiogram, failed to detect any differences in the development of our new baby. But at two days old, Sam was diagnosed with Down syndrome. At nine days old it was discovered she would soon require open heart surgery to correct a complete atrioventricular canal heart defect.
Thank goodness our experience was quite different than that of my great Nana when we heard the news that our beloved child had Down syndrome. A maternity nurse who has a son with Down syndrome came to talk to us about life with her then 11 year old. I wanted to nurse Samantha, and upon hearing this, a lactation specialist was consulted. All of these people who came into our experience had faith in Samantha and confidence in what she could accomplish, and in turn, we did too.
We learned to celebrate small victories, like “latching on” and then nursing, which unbeknownst to me was unheard of for babies with Down syndrome because of their low muscle tone.
After three months of nursing successfully and supplementing with formula, Samantha’s weight of 9 pounds 6 ounces was adequate for her to endure the open heart surgery she required. We learned all about the procedure from the chief of cardiac surgery at Children’s Hospital who patiently answered all our questions at our pre-op appointment.
Sam’s surgery was scheduled for September 11, 2001.
Just as the unimaginable events that unfolded that dark morning would bring our nation together in horror, grief, and ultimately hope, Rob and I were brought together with our family and friends in fear, love, and ultimately hope from the little miracle that is Samantha Rose.
A Poem That Mattered
Samantha’s recovery was benign, and she was home just four days later. The day after Sam was born, a friend of ours who is a web junkie sent us this beautiful poem by Emily Perl Kingsley, called “Welcome to Holland.”
Welcome to Holland
I am often asked to describe the experience of raising a child with disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …
When you’re going to have a baby, it’s like planning a fabulous vacation trip — to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away … because the loss of that dream is a very very significant loss.
But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
©1987 Emily Perl Kingsley. All rights reserved.
This poem helped me through the beginning stages of acceptance after learning of Sam’s diagnosis, and prepared me for keeping the expectations for her life the same as I had for her older brothers. We soon realized that Sam was not unlike our other children. The milestones were delayed but our expectations were the same.
What Is Down Syndrome, Exactly?
For those of you who don’t know what Down syndrome is, I will explain it to you as I do whenever I go into Sam’s classroom to talk to her classmates. Your body is made up of cells. Each cell has 23 pairs of chromosomes; the 21st pair has an extra chromosome, which is why you may hear Down syndrome referred to as “Trisomy 21.” So, it’s as if you’re making a cake and the recipe calls for two eggs, and you put three in, there really isn’t that much difference to the taste, or consistency.
Along with the extra chromosome come a lot of other little things. The physical characteristics of Down syndrome are such that the ears are lower, the eyes are tilted up, the space between the first and second toe is huge, etc.
Health issues are a challenge. People don’t understand when they see Sam out in the community, at school, or participating in an activity that behind the scenes, the smallest thing can affect the house of cards that is her health. We soon discovered that she needed tubes in her ears because her ear canals are so tiny that it is hard for fluid to flow through — she may need them again in the future, after being without them for seven years. Sam sees the otalaryngologist twice per year for audiology testing, and has had her adenoids and tonsils removed.
Sam had chronic sinus infections that turned to pneumonia many times as a small child, and sees an allergist annually. She will always be followed by a cardiologist. She requires much more sleep than the average child – still 11 to 12 hours each night. She has a sleep study each year to determine if she has sleep apnea as is common among many people with Down syndrome.
Sam sees an eye doctor to ensure that she can see what is on the smartboard at school because so many people with Down syndrome have compromised vision. She has temperature instability – her body has difficulty managing its temperature, so her hands and feet can become purple in the winter and “sweaty hot” in the warmer weather. Sam required an x-ray of her spine to make sure that her discs weren’t fused together at her neck like many people with Down syndrome. This would make it dangerous for her to participate in sports or physical education. Thankfully, this was not the case with Samantha. She is a dancer, a swimmer, a baseball player and happy student, but if any one thing is off, it can affect her entire day and mood. It’s manageable but only if we stay on top of it.
We found out about all of this because of the fine medical and public health services that are available. We availed ourselves of all we could, starting with Early Intervention when Sam was six weeks old. We had a physical, occupational and speech therapist along with a developmental educator at our house at least once per week until Sam was three years old. At that time Sam entered the RISE Preschool in our town of Reading, Massachusetts, an integrated pre-school for students with special needs who learn alongside peers who are typical.
Sam thrived there and she stayed an extra year because we wanted her to have the best advantage in kindergarten with a really strong foundation.
Advocating for Samantha to attend our neighborhood school was a hurdle we braced for and were determined to jump. Samantha attends second grade at Birch Meadow elementary school along with her brothers and has done since kindergarten. She is the first student with Down syndrome in our town to be included in the general education classroom, which was a shock to us in the 21st century. Together with Sam’s team, we have put together goals and objectives for her success and look forward to her showing us what she can accomplish.
The Start of a Mission
So, how did Samantha’s Harvest begin? Sam was a little more than a year old when Rob and our friend were discussing holding a golf tournament to raise awareness about Down syndrome. We had our first event just six weeks later and raised $15K. Samantha’s Harvest was born! Our little non-profit kept gaining momentum.
Today, Samantha’s Harvest is a non-profit organization born out of love for our daughter, and seeking to increase the quality of life for anyone who has Down syndrome. We raise money and awareness for other organizations that help us realize our mission, and who have like-minded visions for the future for people with disabilities.
We award scholarships for people who enter the field of special education or who work with this population. We give awards to people in the community who make outstanding commitments to our mission. We do not raise this money for us personally, but for all of the organizations we support.
Since its inception in 2002, Samantha’s Harvest has raised over $300,000.00 for these initiatives. In 2004 we brought a speaker to RMHS, Carrie Bergeron, self-advocate and inspiration to all of us. So inspiring, in fact, that three young women at RMHS wanted to start a SH club and are now in their tenth year helping us realize our mission.
Positive Changes in Our Community
A conversation with the now-deceased Reading Public Schools superintendent, Mr. Pat Schettini, brought about an inclusive schools celebration in our school district that enhances the educational process to include equal opportunities for kids with special needs. I am so proud to have carried the torch to fulfill Mr. Schettini’s vision, asking for help from others in our community.
Students at all grade levels have participated in many organized activities and heard many powerful speakers. Karen Gaffney, a young woman with Down syndrome who swam across Lake Tahoe, among other great bodies of water; Dr. Michael Fowlin, who taught us through his riveting performance that “you don’t know me until you know me”; a guest speaker who came to talk about the topic of anxiety in children, and a documentary called, “Including Samuel.”
Retired Fine and Performing Arts Director at RMHS (Reading Memorial High School) Bill Endslow brought it to a whole other level when he asked students to perform “The Boys Next Door,” about men living together in a group home, along with “The Elephant Man” for the winter play. To connect the topic to the curriculum and broadcast it to the entire community was exactly what Mr. Schettini and I envisioned when we first discussed this, and we couldn’t have hoped for a better outcome.
As a result, students’ eyes have been opened to people who are different – we have taken the “dis” out of disability — truly a reason to celebrate! This is what can happen when community comes together around the right values.
I’d like to take a moment to talk about labels. Earned or unearned, deserved or not, labels are forever. You can understand the diagnosis of Down syndrome and understand some distinctions about certain behaviors, but let me tell you that you can’t lump all kids with Down syndrome in the same category. Not all kids with Down syndrome are just so loving all the time (believe me, Sam runs the gamut of all emotions), or “can’t learn.”
Every child has his or her own unique learning style, and diagnoses aside, must be looked at as an individual. This is called using person-centered language.
Labels stick — and are extremely hard to get out from under. The next time you see or hear a label describing a student or anyone else, check yourself. Make sure you put the person first and not the label when speaking about a person. That child is not a “SPED kid,” he’s a child with special needs. It’s not a “METCO kid,” she’s a student in the METCO program. It’s not a “gay kid,” he or she a student who is gay.
Think about it. When you have an issue like a heart defect or a broken leg you don’t say, “Oh, there’s the broken leg kid.” You say, “there’s the kid with the broken leg.” Or, “there’s the kid with the heart defect.” We are people first — all the other stuff comes after. A diagnosis or a culture or an ethnicity or a religion or a sexual orientation does not define who we are. Down syndrome is just one of the many wonderful things about Samantha. It is not who she is. She is a little girl.
So be cautious in your language – people will live up to our expectations. If all we expect is for someone to live up to our biases, they will naturally pick up on that bias. If we expect them to live up to their unique potential, they will strive to live up to that potential.
I think back to when Sam was young and the local paper did a story on Samantha’s Harvest, and it was such a positive experience. Imagine my surprise when I picked up the paper and saw the headline – “Family turns tragedy into charity.”
There is nothing tragic about the diagnosis of Down syndrome. Another story recently described Samantha as suffering from Down syndrome. No one is suffering. She just has it, that’s all. Language is powerful, and I think you all know what I mean when I talk about the “R word.” Retarded means slow, not stupid – but people sound stupid when they use it in the incorrect context.
“Mental retardation” is also an out of date term; now you would say that someone has an intellectual disability. The next time you hear someone use that word, please speak up. It is the moral equivalent of a racial slur — it is completely unacceptable, offensive, and its use should not be tolerated.
The Issue of Loneliness
A common thread whenever I hear a self-advocate with Down syndrome speak about their life in school is loneliness. They want friends. I ask you all when you see someone with a difference to reach out and be a friend. No one should go through life lonely and yearning for friendships. We are more alike than we are different and I guarantee if you take the opportunity to get to know someone you will soon discover this. Sam has many gifts, but one was succinctly highlighted to me recently years ago by Sam’s first grade teacher, Patti Beckman. She said of Sam, “She makes me feel so special, like I’m the only one in the world in the moment. She pays attention and picks up on the way I’m feeling. She has a genuine gift that not many people have, it is just in her to be that way.”
Who wouldn’t want a friend like Sam? Samantha teaches people wherever she goes. It’s a big job for a little girl, but she is up for it; she really has no choice, and takes it in stride. Having Down syndrome makes it harder for Sam to learn, but it also makes it easier for her to touch the lives of others.
Until people with Down syndrome are welcomed in their schools and community, we have work to do. Until health care providers have up to date research and knowledge about the positive healthy life people with Down syndrome have the potential to lead, we have work to do. Until appropriate funding is available to support people with developmental disabilities from a young age, with the goal towards independence, we have work to do. Until we obliterate the r word, we have work to do. Until all people have a friend and fulfill their need for love and belonging, we have work to do. Until person-centered language is the norm, we have work to do.
Everything I do, I do in honor of my great Nana Michelena. It is a lot of work, but a labor of love. I am so privileged to be Samantha’s mother and learn from her every day. She is my Rembrandt and I wouldn’t have it any other way.