Hi, my name is Rebecca Rappa.  My husband Anthony and I live in Frankfort N.Y.   Our daughter Paige is 23 years old.    We just adore her.  Paige loves all her special olympics sports that she participates in such as, bowling, swimming, basketball, horseback riding, bocce and golf.  She also participates in a book club at the Utica public library.  Paige is very outgoing and finds happiness in just spending time with her family and friends.  She attends the Gail W. Brown Center in Herkimer.  It is a wonderful program  ,she works in the kitchen, greenhouse, dance room, math and computer skills.  She graduated from Mohawk high school.  Our family is so very proud of the beautiful woman Paige has become.  She takes pride in everything she does.  We are so blessed to have our daughter.   I always say how Paige does not judge or make fun of anyone,  she loves everyone she meets.    Thank you God for our precious Paige.

 

My name is Katie Baker, I am the mother of 4 amazing children and work full time at Kids Oneida as a Case Planner. I guess I would call our family somewhat diverse. My children range in age from 25 years to 20 months. We are divorced, yet parent our children together which includes spending quality time, holidays and, upcoming in February a family vacation to California. We have had a little help with staying as close as we are and she goes by the name of Aiden. Aiden is 15 years old and is a 9th grade student at CVA in Ilion and is in a Life Skills Program. She has challenges in some areas of academics but she makes up for it tenfold with her outgoing, funny personality and her awesome athletic abilities.

 

This past year Aiden was a part of the first ever in our area “Challenger Football Program “ through Pop Warner. You will never catch Aiden in anything “girly” she is at heart a tomboy that loves sports, wrestling, swimming, movies, doing art projects and helping her dad, David Wood at his restaurant, Swifty’s.  Aiden is well known around the restaurant and enjoys doing prep work and cooking.

 

My oldest, Jaimee, 25 years old currently lives just outside of Atlanta, GA, and visits us frequently.  Jaimee was 10 years old when Aiden was born. I still remember telling her a couple weeks after Aiden was born that her baby sister had Down syndrome.  As parents of a newly born child with Down syndrome it’s hard enough to understand your own emotions and what it all means, let alone explain it to your other children. We still talk about that day sometimes and it’s one of those moments that you can remember like yesterday, yet seems so far removed from what you know of your life now.

 

Our son Keenan is 19 years old and was born exactly 6 years and 1 week before Aiden. Keenan currently lives in Brooklyn and is pursuing his dream to dance, act and take the world by storm. Keenan posted a picture of his sister on her birthday this year, December 22 and stated “she is the fuel to my laughter. She is the ignition that gets me out of bed.”  They have a special relationship together they have touched so many hearts when they performed dance duets for Centerstage Dance Studio. Padraig (aka Paddy) is 20 months old and splits his time between our family and his biological father. He adores Aiden and as long as he isn’t getting into Aiden’s “stuff” she is a wonderful big sister and they share lots of laughs and wild play. His face lights up when he sees her and it is truly a blessing.

 

I do not believe that Aiden has changed our life, but I do believe she has enhanced it. We all have become more sensitive to the world around us, having become further accepting of others and being more compassionate people. I think we have all wanted to become better parts of who we were after she came in our world, and achieve goals, never taking for granted what we could do. We laugh more, we love each other better, and we could never see our life without her. 

 

 

 

  

Jill and I were both born and raised in Lewis County.  After becoming high school sweethearts, we both graduated from St. Lawrence University with Jill obtaining a degree in Mathematics and Education and myself a degree in Biology and Environmental Science.  After college, we both completed graduate school. Currently, I am a Senior Environmental Specialist for the New York State Department of Transportation and Jill, a former mathematics instructor at the University at Albany, is a stay at home mom.

 

We had always dreamed of having a family.  That dream was finally realized on March 11, 2010 with the birth of our twins, Jackson and Ella.  After a prenatal ultrasound revealed a heart defect, it became increasingly likely that “Twin B” (who became our precious Ella) would be born with Down syndrome.  We declined any prenatal tests to confirm the diagnosis due to potential complications.  However, we both felt at peace that, no matter what the outcome, we would love and cherish our children just as they were.

 

Ella was born with many of the typical issues that children with Down syndrome face such as very low muscle tone, a heart defect, hearing issues, developmental delays etc. She had open heart surgery when she was 2 yrs old, as well as multiple surgeries to open her airway and improve her obstructive sleep apnea. Despite the numerous challenges she has faced, Ella has continued to be a happy, sweet girl demonstrating tremendous resilience through it all.

 

Ella and Jack are now 5 years old and have started Kindergarten this fall at Beaver River Central School. Ella loves to dance, sing, play with her brother, read books, tell jokes and just be silly. The progress in her overall development (due to early therapies from an excellent team of therapists and teachers as well as her own hard work) has amazed us every step of the way. From the beginning, we have had high expectations for Ella.  While she may develop at a slower pace, we believe she has as much potential to succeed as anyone. We have been fortunate that our school district has been very supportive of Ella’s full inclusion with her typical peers.  Inclusion is not always the easiest path forward but we believe the benefits for both children with disabilities and their peers are immeasurable.

 

It is hard to explain in words what Ella has meant to our family. If not for Down syndrome, there are so many incredible people we would have never had the opportunity to meet. Seeing her overcome the obstacles she has faced is truly inspiring and gives our entire family a new positive perspective on life. The unique and special bond she has with her brother Jack is a gift that keeps giving every day. Ella has an amazing ability to bring joy to everyone she meets.  To sum it up, Ella is the light of our lives and we couldn’t imagine life without her and her brother!

 

 

 

  

Meet The Bergerons

 

Peggy always jests about being the senior citizens of the 21 Club and can hardly believe that Carrie will  celebrate her 39th birthday.  But if you think about it, the following profile confirms this!

We were introduced by Tim’s college roommate and one of my friends who were dating at the time.  We got engaged within 2 months and were married thirteen months later fifty-one years ago!  Our first child was born a year later while Tim was studying Industrial Design at the Rhode Island School of Design. His final thesis involved designing a group of play objects from missile packaging reconfigured to enhance therapeutic positioning for children with disabilities. His experiences developing this project plus my profession as a pediatric Occupational Therapist were foundational for when Carrie was born eleven years later in 1976.

Our initial reaction at Carrie’s birth when we learned that she was a

“Mongoloid” (the “Down syndrome” diagnosis not common then) was

honestly one of shock, denial, and grief so deep that as Tim says “it felt

like a funeral”, even though our newborn was alive and seemed

reasonably normal to us.  In retrospect, many symptoms were there. 

What sustained us was our heartfelt love for Carrie, our fourth child.

We loved her from the moment we held her with NO consideration for

placing her in an institution as was suggested by more than one

professional. We determined early on to give her every opportunity to

reach her God-given potential (her individual blueprint) just as we were

with our other three children.

Carrie’s siblings have been her encouragers, stimulators, and cheer

leaders since day one and have chosen careers to help others; a music

teacher, a Physical Therapist, and a CEO of our family business that

manufactures positioning equipment (the “Special Tomato” line named after Carrie’s story) for those with disabilities. The community and school support in our small village has always been extra-ordinary and has continued in Carrie’s transition to her present home in Rome. Her loving personality is a magnet!

We have always been thankful that she was born in 1976 after The Education for All Handicapped Children Act (sometimes referred to as Public Law (PL) 94-142) was passed by Congress.  Public schools were required to evaluate handicapped children and create an educational plan with parent input that would emulate as closely as possible the educational experience of non-disabled students.  Early Intervention began in our county when she was six weeks old!  The Special Educator, a Speech Therapist, Physical Therapist and Occupational Therapist provided us weekly with the resources we needed along with therapies for Carrie’s developmental needs.  Internet research and resources about Down syndrome were not available then!  At three years old, she transitioned to a typical preschool with a “Carrie tailored” developmental curriculum provided by the BOCES special education team.  She entered kindergarten when she was six years old.

Her public school years entailed general education classes (mainstreaming, today known as inclusion) and special education classes. She always needed extended time, modified lessons, repetition, and extra support. This balanced approach was very progressive in those days! She graduated at age 21 with an I.E.P. diploma.   Needless to say, she exceeded our expectations especially when she graduated from Herkimer Community College with a Teacher’s Assistance certificate.  It took her four and a half years to cover this one year program but she did it! She was also thrilled last Fall to be asked to join the Herkimer College Alumni Hall of Honor alongside former students who have achieved noted success in their careers.

We never envisioned that she would one day live independently almost an hour away from us as part of a Self-Direction program where she receives 45 hours/week of staff support. She loves her cozy apartment and life in the community of Rome.  Technological advances also help to make this possible, the cell phone being our 24/7 lifeline.

Her many roles include being a  daughter, sister, volunteer, teacher’s assistant for toddlers with special needs, a first degree black belt holder,  fitness enthusiast, teacher (teaches Tai Chi  to the elderly in  an extended care facility), friend, conversant in sign language, student,  pioneer, dancer,  along with being a motivational speaker.  Her passion is to spread awareness that all people with Down syndrome and other disabilities should be given every opportunity to meet their individual potential and success.  As her quote states, “I have taken the “dis” from disability and made it my ability to advocate for those of us with special needs”, especially as a board member of the 21 Club!

 

 

  

Meet The Allens

 

The Allen’s are a loving family from Barneveld, NY.  Alfred and Lynn first met back in the day working for General Electric in Utica. They fell in love, got married, and were blessed with two children. Ben, the oldest, is an accomplished and inspirational 26 year old big brother with Down syndrome.  I am the second and youngest 23 year old daughter.

 

I am a Speech Therapist for Upstate Cerebral Palsy.  A career decision fueled by growing up with the amazing brother that I have. I graduated from SUNY Geneseo and wouldn’t have been able to do it without my family’s support. 

 

Without my brother I would not be who I am today.  As much as I love my brother and wouldn’t trade him for any other person in the world, it isn’t easy growing up with a sibling who has special needs. Through it all, my brother taught me nothing but unconditional love, the value of patience, and he gave me the desire to accomplish all of my dreams. I learned so much about empathy and encouragement at such a young age that most people don’t understand until they’re adults.  Since Ben was such a huge part of my life, let me tell you more about him!

 

Ben is an active 26 year old man. He graduated from RFA in 2009. Since graduating, he attends the Arc Venture Center in Kirkland and Arc Workshop in Utica. Through his day placements he volunteers for many different local organizations and even earns a paycheck! He is a third degree black belt through Baily’s karate school in Rome and also helps teach a Special Kicks class for special needs students on Saturday mornings. Through CSS (Consolidating Support Services) Ben will be moving out this fall and moving in with 3 other young men who also have special needs. Ben has always talked about moving out, going to college, and achieving those life milestones any typical 26 year old would want to do. It’s very hard to encourage Ben’s independence when it comes to moving out because we will miss his charming personality every day. Plus, who can raise a child or sibling better than their family right?!  Luckily, this program is ideal for our family because it allows the parents to act as a “board of directors” for the house, giving them the ability to hire and fire workers as they see fit. 

 

I cannot imagine what my world would be like with my brother or what the whole world would be without people with Down syndrome! Ben has taught his family and friends so much about life without even realizing it! He is truly a blessing that we love very much!  

 

  

Meet The Alongs

 

 

Hello! My name is Michelle Along, and we are truly honored to share our story.  My husband Mike grew up in Clinton, and I grew up in Frankfort. We met through mutual friends in 2007. We were married in July 2010. Mike is a corrections officer and works in Marcy, and I'm a full-time mommy and work part-time at TJ Maxx. Our son Noah was born September 22nd of 2009.  He was sent home with us from the hospital with a clean bill of health.  At the time he was not diagnosed with Down syndrome. It wasn't until his 2 week appointment at the pediatrician's, where they wanted to do blood work to "rule out Down syndrome".  I remember that day very well.  I couldn't breathe, my heart was beating out of control, and I wanted to faint. How could nobody  pick up on any of this?  I was so scared and kept thinking, why us?  What did we do to deserve this? I know it sounds terrible. I still prayed and hoped the blood work results came back negative. But it was a long and stressful
week later that we received the phone call that would change everything. We were told that our son Noah had Trisomy 21.  So we cried, we got educated, and we got involved.  And no matter what, he was still that same Noah we took home from the hospital that we loved so much.

Noah is five years old and attending kindergarten in the fall. He loves his iPad, swimming, and playing outside on his swing set. Noah read his first book to us a few months ago. It made our hearts sing. He never gives up and has a lot of spunk.  He is truly our inspiration. Because of Noah, we appreciate the little things, and accomplishments that can be taken for granted, and he continues to teach us to be patient. Above all, he does everything with a smile. He is such a happy entertaining little boy. Noah loves his nana and papa, and grandma and grandpa. He enjoys spending time with them.

We welcomed our second child, Alexa Rose Along, to our family on November 13, 2013. Noah is an amazing "BIg Brother."   His sister adores him. We are truly blessed. Noah continues to amaze us and inspire us everyday. And although we have our challenging days we wouldn't change our journey with him at all. He is our ray of light.

And even though  we weren't prepared for any of this, (open heart surgery at 6 months old) we have met some amazing people and families that helped educate and support us through it all. God bless The 21 Club and all you do! Such an amazing support system. Thank you to our families. We couldn't do it without you!

 

 

  

Meet The Smoulceys

 

 

Hello everyone! My name is Pamela Smoulcey and I’m excited and honored to share our story. My husband Mike and I met through mutual friends in 2004. Mike grew up in New Hartford while I grew up in Utica. We were married in October, 2008. Mike works for the Town of New Hartford and I am a Special Education Administrator at Oneida-Herkimer-Madison BOCES.
Makayla Kathleen was born on February 8, 2012. We were in love as soon as we met her. On February 9th, her pediatrician came in to say that he was about 90% certain that Makayla had Trisomy-21. Mike and I knew he was wrong, she was perfect and healthy and we were excited to start our life as a family! She was perfect and healthy and on February 15th, it was confirmed that Makayla did, in fact, have Down syndrome. In that moment, our life seemed to come crashing down. What did we do to deserve this? Was I being punished for something that I did? After thinking all of these negative things, I looked at Makayla and saw how beautiful she is, inside and out. She is just a typical baby. I finally realized that Mike and I did not do anything wrong; we did everything right! We were also very fortunate to meet the Savickis who also showed us that our life was not over, it had just begun!

Even as a Special Education teacher working with students with special needs for years, a person can never be prepared enough to receive a diagnosis of any kind. We quickly learned about Early Intervention, health concerns related to Down syndrome and therapy (to name a few!) on top of being new parents! From day one, Makayla has made us smile. She never gives up and that, in turn, motivates us to be the best we can be! Makayla is now a bright, vibrant and witty 3 year old diva! She loves her Nonnie, Poppie and Aunt Patrice as well as Mickey Mouse Clubhouse, dolls, playing with her friends at daycare, singing and dancing to music! She has quite the appetite and will try anything at least once! She is also a little traveler! She has made many trips to New York City and has been on a cruise to the Bahamas!

On June 17, 2014, Mike and I were blessed with another little miracle, Dominic Patrick. Makayla absolutely loves her little brother! Every time Dominic sees Makayla, his face lights up and the giggles begin! Dominic is 9 months old and our hope is that the love and support that they have for each other now continues for a lifetime!

We are so proud of both of our children, but Makayla inspires us each day. She continues to grow, even when life throws her a curve ball. We would never say that being a parent of a child with a disability is easy, but neither is being a parent in general! Because of Makayla, we have a little more patience, we smile more, and we celebrate the small things that usually go unnoticed!

We are incredibly grateful to our family and friends that have supported us and have included Makayla! We are also extremely grateful to The 21 Club of CNY for providing emotional support and for presenting us with opportunities to learn of all the things that are possible for our children!

 

 

 

  

 

 

 

Hi my name is Eileen Lindsay and my husband is Robin Jr. We are natives of Schuyler.  I am currently a stay at home mom and my husband is a welder at Metal Solutions in Utica. We met when my husband moved down the street from me back in 1996, we were engaged in 1999 and finally married two children later in 2011.

 

The road to conceive Emma was a bit rocky suffering two miscarriages in one year and it taking two years after that to become pregnant without the pressure of trying.  I had some soft markers show on my ultrasounds that were a red flag for Down syndrome and confirmed that Emma indeed had Down syndrome through amniocentesis at 22 weeks.  My mistake was to see a genetic counselor after confirmation of Down syndrome, not knowing that they basically we're going to try and have me terminate my pregnancy giving me all the information from the '60s.  But regardless of her diagnosis what is meant to be is meant to be.  I was given this opportunity to become pregnant and it wasn't my decision to make to end it.  Anyways, Emma was born on October 1, 2009 and what a sight of perfection she was. 

 

Emma never ceases to amaze me, she is a spunky 5 year old that is currently in a full inclusion kindergarten classroom at West Canada Valley. I have to say I am so humbled to hear that there isn't a student or teacher in the elementary school that can't help but say hi to Emma in the hall at school.  Also to be out and about and have someone say are you Emma's mom? That they just enjoy seeing her in the hallway, how bubbly, sweet and happy she is.  How she can always make someone's day with just a simple hug. Emma enjoys Doc Mcstuffins, The Fresh Beat Band, music, books, swimming, her iPad and the love hate relationship of siblings.  Ethan is 10 and in the 5th grade and loves Emma to pieces, but also has that don't touch my stuff and stay out of my room attitude at times. Ruby is 21 months and has learned so much from Emma both good and bad.  With Emma learning to count Ruby has also learned to count to ten. Whatever Emma loves so does Ruby, which can result in some tiffs when we only have one of certain toys.  They truly have a wonderful relationship the three of them!!!  I have to say that having a child with Down syndrome may have its challenges but so does that of a typical child.  No one in my family favors or treats Emma any different than anyone else.  We push her to be the best she can be as I do my other two children.

 

Thank you to The 21 Club who has helped out tremendously when question arises about health concerns as well as any services that can be obtained to better the quality of life and acceptance to individuals with Down Syndrome.  Thank you for all that you do!!!

 

 

  

Meet The Lindsays

Meet The Kotarys and Chaffees

 

21 Club Board member Judy Chaffee's granddaughter has Down syndrome.  Here are some words from Judy about her experience with Katelyn. 

 

Katelyn is my first grandchild. The moment I held her I knew that she was

a special gift from God. Not only to me, but to our entire family. Shortly

after birth, tests confirmed the extra chromosome present in Down

syndrome. In my research on Down syndrome, I came across the

"Welcome to Holland" letter and I knew that I would embrace this journey

with all my heart. My career is in education. In Katelyn's eight years, she

has taught me so many, many things; mainly about unconditional love

and acceptance. Katelyn brightens my life everyday. The love and joy she

brings to me is beyond what I can explain. Through our support group,

I have met so many incredible children and adults. This trip to Holland is

"Down Right Awesome"!!

 

Katelyn's mom, Lori tells us a little about their family and Katelyn.

 

 

I grew up in Barneveld, and my husband Jeff grew up in Floyd. We both went to Holland Patent schools, but never met. He knew my sister, Betsy.  Jeff & I met in 1993 at a bar.  I was out with my sister, Betsy.  Betsy & Jeff were closer in age, as I am 5 years older than Jeff. It's all Betsy's fault! He was buying me drinks and she said he was harmless.


We were married on April 17th, 2004.  Jeff says we took our time as we had to get to know each other...I guess it worked.
 

Katelyn was born January 2, 2006.  She is almost 9 years old and attends General William Floyd School in Stittville. We have some wonderful teachers and therapists working closely with us to help her in anyway they can. We are very lucky!
 

Katelyn loves music, movies, horses and her friends. She also loves to eat. Her favorites are corned beef hash, dill pickle chips, milk & much more. She does not have a sweet tooth at all! She does not like cake, candy, or cookies.  I sometimes wonder if she is my child as I can smell chocolate 5 miles away!
 

 What has she brought to our family?  Such a hard question.  Everything!?  Yes, definitely!  So much happiness and unconditional love.  She teaches us something everyday. There are rough days also, when her ability to communicate better would be easier, but then we would not have this wonderful adventure we are on.

 

Thank you Lori and Judy for sharing your stories with us! 

 

 

 

 

 

  

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The 21 Club of CNY, Inc.

PO Box 264​

Washington Mills, NY 13479

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