Samantha's Harvest

About 85 years ago, my Nana’s sixth and last sibling was born. Rudolfo was a baby with a difference, labeled mongoloid, imbecile. His mother, my great nana Michelena, went against the advice of doctors and family and decided to bring Uncle Rudy home. She was advised to institutionalize him and forget he was ever born. She was told he would never amount to anything. Uncle Rudy had Down syndrome and lived at home with his family until he was a teenager. 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. No one knew how to help her. They 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 was afraid that he would eventually hurt somebody or himself. She felt the best she could do to protect him was what she was initially advised to do - put him in an institution. When my Nana, Michelena’s daughter and Rudy’s sister, recounted that story many times to me, she would cry and tell me that a piece of her mother died the day she put him away. While the family visited him religiously, there was an emptiness in all their hearts.

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 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. He 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 there could be a cardiac team on standby at birth. Any baby could have a 5% chance of having a heart defect as benign as Douglas’ or something more complicated. Alec was born 364 days after Douglas with no heart defect; he has broken three bones in his short life, but no heart defect!

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.

Prenatal testing which included level III ultrasound and fetal echo cardiogram failed to detect any differences in the development of the baby. At 2 days old, Sam was diagnosed with Down syndrome and at 9 days old it was discovered she would soon require open heart surgery to correct an A/V canal heart defect.

Our experience was quite different than that of my great Nana upon hearing the news that Sam has Down syndrome. There was a maternity nurse who has a son with Down syndrome who 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 had faith in Samantha and confidence in what she could accomplish. 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.

Just as the horrific events that unfolded that 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.

Samantha’s recovery was benign and she was home just four days later. The day after Sam was born, our friend who is a web junkie, sent us this beautiful poem by Emily Perl Kingsley called Welcome to Holland.

This poem helped me through the beginning stages of acceptance upon 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. Among other things, Sam drank from a sippy cup at five months like her brothers, much to the surprise of our pediatrician.

For those of you who don’t know what Down syndrome is, I will explain it to you as I do when I go into Sam’s classroom to talk to her classmates. Your body is made up of cells, each cell has 46 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 (the fourth set is in her ears now) because her ear canals are so tiny that it is hard for fluid to flow through; she sees the otalaryngologist twice per year for audiology testing and has had her adenoids and tonsils removed. She has 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. She 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 xray 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. This was not the case with Samantha. She’s 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 Reading, an integrated pre-school for students with special needs who learn alongside their 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 regular 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.

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 six weeks later and raised $15K. Samantha’s Harvest was born and gained increasing momentum. Samantha’s Harvest is a non-profit organization born out of love for our daughter. We raise money and awareness for 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 $150,000.00 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 fifth year helping us realize our mission.

A conversation with former superintendent Pat Schettini brought about our inclusive schools celebration that our school district recently enjoyed to enhance the educational process around social justice. I am so proud to have carried the torch to fulfill Mr. Schettini’s vision, asking for help from others in our community. The 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 speaker who came to talk about anxiety in children, the documentary Including Samuel. Fine and Performing Arts Director at RMHS Bill Endslow brought it to a whole other level when he asked students to perform The Boys Next Door about men who live together in a group home and The Elephant Man for the winter plays. 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, these students’ eyes have been opened to people who are different – we have taken the dis out of disability, truly a celebration!

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 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. It’s not a SPED kid, it’s a child with special needs. It’s not a METCO kid, it’s a student in the METCO program, it’s not a gay kid, it’s a student who is homosexual. 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 and 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. Be cautious in your language – people will live up to our expectations, and if all we expect is for them to live up to our biases, they will 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. 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 – people sound stupid when they use it in the incorrect context. Mental retardation is an out of date term; now you would say that someone has a developmental disability. The next time you hear someone use that word, please speak up. It is the moral equivalent of a racial slur, it’s completely unacceptable, offensive and its use should not be tolerated.

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 by Sam’s first grade teacher, Patti Beckman. She said, “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 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 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.

About Samantha

Samantha's Harvest

Board of Directors

Samantha's Harvest