DSAM

DSAM Impact Stories: Thank You!

October has come to a close, and Down Syndrome Awareness Month 2019 along with it. We’re so grateful and so inspired by all of the PALS community members who submitted impact stories for us to share with the world.

Sadly, there weren’t enough days in the month to feature each and every submission, but we believe everyone’s voice deserves to be heard, and each individual story has the power to inspire.

Below, find every submission that we didn’t get the chance to feature during DSAM. Feel free to skip around or read chronologically… all at once, or bookmark and swing back whenever you need a boost. And while you’re at it, look back on our Facebook, Twitter, and Instagram profiles for all the featured impacts in October 2019!


From Darlene: My son, Nick, has shown me how to not take myself so serious. He walks around life with so much confidence. He loves who he is and what he looks like. We all should be like him. He has brought many challenges but with these challenges I have met so many people. He makes friends wherever he goes. Again, I wish I had his confidence. He doesn’t take no for an answer. He wanted to be on the high school swim team and got himself on it. He did the same thing with track. He wasn’t the fastest in either but he brought hugs and greet enthusiasm to each team I have learned so much from my son and have learned to celebrate his abilities.

From Theresa: My son Jamie was diagnosed with Down syndrome at birth. As a mom, I had many questions and concerns about his life at that time. As Jamie began to develop, he has shown me that there are no limits to what a person can do. He has gone against the odds when doctors told us he could not play football just because of his diagnosis, and yet he played football all 4 years in high school and made tackles and scored a touchdown. He changed the coaches and players lives as to how they see people with disabilities. He played in the community basketball league and scored many baskets. When he was taken out of the game to give others a chance to play, the crowd would chant to put him back in the game. When I was concerned about milestones such as prom, he once again proved he can do what other typical peers do and he asked a young lady to his prom. He went to his junior prom, senior prom and her senior prom. He was asked to participate in a flag football tournament that is held every year with our local flag football team. This event is held at Giant Stadium. It is a fund raiser for Special Olympics. My son was allowed to go on the field and play with the team. He was to run a few plays. My son told the team captain, I don't want to run with the ball, I want you to throw me a pass. Of course, my husband and I are in the stands and all of a sudden we see Jamie run down the field and the ball being thrown down the field. Jamie turns around, reaches up and catches the pass and runs in the touchdown. He is always raising the bar. Jamie has had many other accomplishments (I can go on and on) that he has proven over and over again that he does not want to be limited to what he can and can't do. He has taught myself and many others to do the same. His desires and goals matter. Thank You!

From Kiersten: Last year when I was volunteering at PALS San Francisco, I was blessed by having Lindsay Whalstrom as my roommate. When I called Lindsay a few weeks before camp to get to know a little more about her, I already knew she was an amazing person, but little did I know that she was going to change my life forever. That week at camp with Lindsay was one of the best weeks of my life. Whether it was singing along to Hannah Montana in the morning while we're getting ready, or dancing our hearts out to any song that came on throughout the day, we always had the most amazing time together. Lindsay is without a doubt one of the most selfless and caring people I have ever met. Ever since camp ended last year we had (and still have) our weekly facetime dates where we catch each other up on each other’s lives. I also was lucky enough to fly out to Minnesota over my spring break to surprise her at her home, and spend five whole days doing anything and everything together. Lindsay has taught me to never be afraid to be myself, and to live my life without any regrets. She pushes me to be the best version of myself each and every day, and to have a more positive outlook on life instead of being negative and pessimistic when things get hard. I love Lindsay with all my heart, and I couldn't be more grateful that Camp PALS brought us together. Because of PALS I now have a lifelong best friend. I am so thankful to be a part of a community who see's the ability in everyone, and that understands there is no such thing as limitations when there is such a thing as love. Thank you Camp PALS for all you do not just for me, but for everyone who is lucky enough to have the chance to be apart of this organization. Happy Down Syndrome Awareness Month!

From Joni: My son, Jeremy, has taught me what compassion is, what patience is and what acceptance means. He always loves me, does not hold a grudge and always forgives me when I do make a mistake. He is generous with hugs and can always make me feel better if I am a bit down with life's challenges. His attitude is mostly positive unless someone doesn't "get him" and how he views the world a bit more simply and with a lot more love. My life is much richer and fuller because of him - I don't know who I would be without the depth of such a bond. He is a gift towards self awareness. An angel in human form.

From Tori: Thinking about an answer for this question is so difficult. It holds such magnitude that it's hard to put into words. I'm not a sibling or a blood family member, yet I find myself thinking about the thousand of little moments in my life that I know are and have been forever changed because of my friends and loved ones who have Down syndrome. I am the person I am today because of these relationships. I've learned more about what it means to love with a fuller heart. I learned that we shouldn't be afraid of the differences we have, even when it's scary to open up about how we feel about them. I've learned that we're all human, and more often than not we feel and go through way more similar aspects of our lives than we do different ones, Down syndrome or not. I've had deeper more meaningful conversations of how important it is to welcome and accept one another, and what that could do to the world we live in. Because of a loved one with Down syndrome, I've learned the deeper meaning of the word Congratulations and how this word could change someone else's life. Lastly, I've learned how important it is to introduce more of friends and families to our community and to my loved ones with Down syndrome, because if we live in a world with more Agents of Change, we will live in a world of PALS being our everyday reality.

From Christine: Briar is the best son a mom could ever have. Briar has a sense of humor, when you are sad, Briar will make you laugh. Briar has a best friend named Matt, they are the true meaning of best friends. Camp PALS in Scranton was the best time Briar has had - 1st time away from home! Briar is full of energy, laughs, and is comical… a social butterfly also! I am so proud to call him my son.

From Jackie: Individuals with Down Syndrome have impacted the last 27 years of my life as a school nurse. They have given me such happiness and unconditional love. Two of my students have left a mark on my heart, Justin and Austin. Justin battled two heart surgeries and lost his fight with leukemia while always displaying courage and keeping a smile on his precious face. Austin performs in a local theater group and helps us remember that his abilities define him and his disability does not limit him. Both boys have tremendous moms that exuded love and encouragement! My experience at Camp PALS as a medical volunteer has cemented my belief that each and every one of us can achieve our goals when I witness the awesome experience that this organization brings to its campers and volunteers!

From Anthony: My friends with Down syndrome have positively impacted my life by helping me with my disabilities and being great friends. I am a person with Asperger’s and ADHD, and my friends with Down syndrome have helped me overcome some of the aspects of those disabilities. They have done that by talking to me about their problems and issues, which we solve together, and me talking about my problems and issues. Even if we do not talk about each other’s problems and issues. Just thinking about it from an outside perspective allows one to think about some issues and problems that have come up and think about how to solve and see things differently. My friends with Down syndrome and I have helped each other overcome our disabilities.
I have gotten to volunteer at two camps for young adults with Down syndrome, and it has been fun hanging out with my friends there and outside of camp. First off, It was really cool to be remembered after not seeing each other for a whole year. And, then hanging out like we just saw each other yesterday. Going to camp together is fun. Now, when it is not camp time, we do communicate with each other via social media, and when time allows, we try to hang out together in person. Some of the fun things that I have done with my friends and great memories include:
• Playing air guitar together
• Watching videos from my visit to the aquarium together, especially the sharks
• Wearing my college colors: Ohio State University and University of Kentucky
• Being at my wedding, and hanging out with my groomsmen
• Bowling together
• Splashing around at an awesome pond and having fun around the farm
• Visiting downtown Baltimore together
• Giving each other high fives
• Lastly, just being my friend
My friends with Down syndrome have positively impacted my life by being my friends.

From Brigid: My younger sister, Amy, has Down syndrome, and her positive impact on my life has no end. For the sake of picking one way she has affected my life, I would highlight how much she makes me laugh. I don't think anyone can make me laugh quite like Amy can. Whether it is a witty comment, such as when she announced that she was "not running away, I'm walking away!" or her fearlessness to break out in dance anywhere there is music - even a Lululemon store - Amy never fails to bring humor and joy to my everyday life.

From Luisa: I have been lucky enough to find myself surrounded by some amazing people, and a lot of them just happen to rock an extra chromosome. In my life I have a wonderful younger sister who has joined me at PALS this past summer and we both share a handsome dancing machine of a brother with Down syndrome. My brother Sal is a year younger than me and we have been stuck at the hip for as long as I can remember. Growing up, having Sal in our lives was our normal. I never thought that there was anything different about my family until I started to get older and noticed the stairs and people talking around us. However, as I continued to grow and find a bigger community of families like mine I knew that what we had as a community was special and unique. To be a part of that is something that I will always be eternally grateful for. My brother has shown me, with so few words, how amazing life can be. He shows me that you need to embrace the things in life that make you happy and roll the things that don't right off your shoulder. He makes me a better person in every way possible and has guided me towards certain life goals as well. I recently just started graduate school to be a speech language pathologist and am a certified early elementary school and special education teacher. I chose to go into this field because I want to make an impact on a community that has shaped me into the person that I am today. Any time that I am stressed, my brother is just a facetime call away and just one smile from him makes the goal a lot clearer. I could go on for pages and pages, but in the end I am truly lucky to be a part of the lucky few.

From Carlie: I met Tori when I joined PALS Club my freshman year of high school; we became immediate friends. Throughout my high school years, Tori has given me much more than friendship; she has taught me strength and love for one another. No matter what, Tori is always smiling. Her mother recently got diagnosed with cancer, and Tori continues to stay strong through it. She inspires me every day to stay positive, and she has made a huge impact in my life.

From Erica: My daughter, Gretchen, has opened my eyes to what is truly important in life. She has taught me to celebrate the small victories and overcome the defeats. She has taught me how to forgive quickly. She is our barometer for good in this world. She has changed so many people’s lives in our community for the better. We should all have a little Down syndrome in us. It would make the world a better place. Be kind be good be happy.

From Malorie: After PALS, my life has been changed for the better. My roommate, Sophia, has taught me how to live happily and inclusively and even helped pave my way to choosing a major for college. I realized after PALS, this is my passion and I’m going to pursue a career in special education!!

From Cassidy: I am both blessed to have a brother with Down syndrome as well as so many friends who rock that extra chromosome. Growing up with my older brother Drew, he has opened my eyes to so much in the world! His constant phrase, "relaxxxx Cass" reminds me to not worry so much. He gives me a unique perspective to be confident in myself, love endlessly, and make everything fun because he does each and every one of those things plus so much more!!! I am studying Occupational Therapy and he recently got a position interning at a local hospital and often says "I'm doing therapy, just like Cass". That goes to show how much of an impact were both making on each others lives. If it weren't for him, I wouldn't have discovered my passions! And I can't forget about my sweet friend Soph. I get such a big smile on my face just thinking about her! She is the spunkiest, sassiest, sweetest and most loving friend I have ever met! She reminds me each and every day to chase after the things I want because thats exactly what she does, just with some extra sass thrown in there! She may live 1,500 miles away from me, but that doesn't stop our friendship! I was able to surprise her in Arizona for her sweet 16 and spend the week with her family, we call each other almost every day, she will post random pictures of me on her Instagram..still getting used to that one :), we write each other letters back and forth, and most importantly we go to camp together! Our late night Taylor Swift dance parties, our "serious face" contests that last all of two seconds and end in tears from laughing so hard, and the quality time we get to spend together doing the things we love make our friendship so much stronger. I wouldn't be the person I am today without these amazing individuals. I can't ever put into words how much of a positive impact they have had and continue to have on my life! So much love for my friends!!!

DSAM 2019 Impact Stories: Josh & Sam

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My sister has...

Added Perspective:

When I was 3-4 years old, a preschool friend had asked me if my sister was mentally retarded. My response was, "No, she just takes a little longer to learn stuff." Having a sibling with a disability, watching her grow up and witnessing that she needs some extra help, from everyone (family, friends, educators, etc) provided me with valuable insight into life, in general. Everyone is different in their own right.

Everyone needs help in one way or another.

As I got older, that simple truth provided a lens into how one [should] live among society. Embrace each other’s differences. Cliques, circles, groups, whatever you want to call them... while they may create a support system for like-minded individuals, I never felt like I was part of them, or, for that matter, needed to be part of them - and I think that's a good thing. It's not right to exclude people for their differences, whether intentional or not.

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Enhanced Empathy & Emotional Intelligence:

It wasn't until I got into the "real-world" (a.k.a. not living at home) that I realized how important these topics were. I believe they go hand-in-hand with having added perspective. Being the oldest in our family, I witnessed and experienced, first-hand, the effort my parents invested as my sister entered the education system. What was seamless for me was quite the opposite for my sister and my parents. Being part of their struggles, knowingly or unknowingly, taught me a valuable lesson in understanding other’s emotions. A lack of empathy from educational leaders toward my parents was the heart of the problem.

Outside of my parents' challenges raising a child with a disability, growing up with my sister, I can remember a time when there was a chance she may be non-verbal. From all this time spent with her, I picked up on little behavioral cues that, to this day, help me better perceive how she may be feeling on a particular day. No words are needed, despite the fact that she's a chatterbox these days! In the "real-world," these skills are invaluable (and some may argue, more important than IQ) because it's essential to be able to put yourself in someone else's shoes. My whole life I've been trying to put myself in someone else's shoes, so that I could understand the WHY behind behaviors instead of questioning them.

She has inadvertently been taking care of me for 31 years, keeping me grounded and reminding me of what's truly important in life.

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While these attributes can be learned, I feel that the 168,000+ hours (20+ years) I've logged with my sister meant these skills were inherent from when she first came home from the hospital. Every time I return home I'm quickly reminded of how loving & compassionate my sister is (from notes left on my bed, hidden in drawers, hidden in my suitcase) and I realize just how much of a blessing it is to have someone like her in my life. She has inadvertently been taking care of me for 31 years, keeping me grounded and reminding me of what's truly important in life.

My sister, and all our friends with Down syndrome, provide a breath of fresh air to a world that desperately needs it!

– Josh

This post is part of a series of PALS community submissions based on the prompt: How has someone with Down syndrome impacted your life? Watch for daily posts throughout October on the PALS Facebook, Twitter, Instagram, and Blog.

DSAM 2019 Impact Stories: Sonia & Patrick

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Patrick is my son, and when he was born, I was so afraid that I would not be equipped to teach him what he would need to live a happy and fulfilled life. I imagined our lives ahead changed forever. A life filled with anxiety over the unsure and the presumed. I grieved for the "perfect" child that I had imagined all my life, and I worried about this "special" child for the rest of his - and our - lives.

Little did I know, Patrick would actually teach us everything we needed to know about being happy and fulfilled in life. Little did I know just how perfect a human being he would be.

Patrick has taught us what true, sincere, and endless love is. He loves without reservation. He accepts people as they are. He is content and happy with the simplest of things that life has to offer. He has a heart, that although has some surgical scars, is made of gold. He celebrates everything. He forgives and forgets entirely. He doesn't hold grudges. He is gentle and kind. He is patient with our impatience. He is willing to try anything and works hard at it when given a chance. He gets frustrated when he doesn't achieve it, but he quickly accepts challenges and is willing to try something else. He is consoling when we are frustrated.He is grateful for everything and anything. He asks for nothing and accepts everything. His wisdom in life far exceeds his IQ.

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If only we could all accept and treat each other and ourselves like that. If only we could all learn to live each day "completely", the best that we can, without worrying about tomorrow, and appreciating each moment as it comes. If only we could hold on to the hope that all is possible, if we don't set limits or presumptions on ourselves or others.

I have learned so much more from Patrick than he has from me. Through all his successes and failures, I realize that he is the most perfect human I know.

And yes, he is special. He is extraordinary.

He is who I aspire to be.

-Sonia

This post is part of a series of PALS community submissions based on the prompt: How has someone with Down syndrome impacted your life? Watch for daily posts throughout October on the PALS Facebook, Twitter, Instagram, and Blog.