Press Release, New DSA of DE Executive Board

FOR IMMEDIATE RELEASE

DOWN SYNDROME ASSOCIATION OF DELAWARE ANNOUNCES NEW EXECUTIVE BOARD LEADERSHIP

The Down Syndrome Association of Delaware (DSA of DE), a statewide nonprofit organization, is proud to announce new leadership within their Executive Board of Directors. The DSA of DE was founded in 1979 and serves individuals with Down syndrome and their families throughout the state. The organization provides educational programming, social activities, exercise classes, outreach support and much more to over 400 families every year.

Melanie George Smith, will be serving as the organization’s new Vice President. Melanie has over 20 years of experience as an attorney, was a legislator for 16 years and recently founded a start-up consulting company, Sustainable World Strategies, in order to help organizations, improve their bottom line. She is a lifelong Delawarean and mother of two young children. Melanie states, “I am honored to be serving on the board of the DSA of DE, I am very passionate about helping the organization grow purposefully to serve not only individuals with Down syndrome, but the community as a whole.”

Ted Griffith, began serving as the board’s new Treasurer at the end of 2018. Ted is a Certified Financial Planner (TM). He and his wife, Krista, live in North Wilmington with their sons, Sam and Nate.

Tahita Muhammad is transitioning as an At-Large board member to the Executive Board as Secretary. She has been involved in the organization since her son, Leon, was born with Down syndrome. She lives in Newark with her husband and two children. Tahita works as a Registered Dental Hygienist in a pediatric office.

Dave Gazzillo has been serving as Board President since 2017.  Dave works full time for Bank of America as an SVP of Statement Marketing Operations. He and his wife, Jeanne, have three children.

Lauren Camp serves as the Executive Director of the Down Syndrome Association of Delaware. She has been involved in the organization for the past eight years. She also serves as Policy Associate for the National Down Syndrome Congress, Board President for Down Syndrome Affiliates in Action and Co-Founder of the non-profit, Down to Box. 

For a complete list of board members, and more information about the organization please visit www.dsadelaware.org. Interested in becoming involved? Contact us at 302-995-1004 or email info@dsadelaware.org. We also encourage community members to like us on Facebook!

 

 

 

Pictured from left to right: Melanie George Smith, Ted Griffith, Tahita Muhammad

Board Nomination Forms Open Until April 1 2019

Dear DSA of DE Family and Friends,

We are accepting board nominations between now and April 1 at 12midnight. Please review the nomination form below if you are interested in applying. All completed applications should be scanned and emailed to info@dsadelaware.org.

Elections will take place at our Annual Dinner on Saturday, April 13 in Wilmington, DE. Registration is available HERE.

Please email or call 302-995-1004 with any questions.

Thank you!

Form Available HERE

21 Stories for WDSD- Stuart

I learned that I was expecting our second child in 2008.  Although I was ecstatic to learn the news, my experiences after that left me with mixed emotions. During one of my early prenatal visits, the doctor could not hear a heartbeat.  Although he tried to reassure me by telling me that we would likely hear it during my return visit in two weeks, the waiting was agony.  Thank God they eventually heard the baby’s heart beat.  Things were normal for a couple of weeks.

I returned to my doctor’s office for another prenatal visit, only to find out that my routine blood work revealed a result that was associated with a less than 1% chance that my baby might be born with Down syndrome. I never really had to make this kind of decision, but I knew that I worked best when I had all of the facts.  When the doctors asked me whether I wanted to undergo further tests to confirm whether the baby had Down syndrome I immediately said yes.

I probably should have been nervous when I arrived for the amniocentesis, but I felt at peace.  After about 40 minutes, and what seemed like an endless amount of attempts to obtain enough of a specimen to conduct the test, the waiting was finally over.  I now knew that my baby boy would be born with Down syndrome.

I have to say that I was overwhelmed with thoughts about what this news meant for our family.  I knew that I was going to bring a child into the world and that God does not make mistakes. I thought that people would respect our decision, but I was wrong.

I wanted to be happy.  I wanted to plan for the best.  I wanted to have support from my friends, family, and physicians.  Instead, I received so much negative feedback about our decision.  Health care providers bombarded me with all of the worst case scenarios, telling me things like “Your child will not walk until age 4 or 5” “ Your child will not be able to learn” “Your child will not be able to eat without significant difficulties”.  I wondered why more people didn’t simply say “Congratulations”  “We are praying for you” “We support your decision” or simply “How can we help”?

Despite the negative words and attitudes that surrounded me, I decided to stay positive.  I faithfully went to my prenatal appointments every two weeks and followed the doctor’s instructions. During one of those visits, I received a wonderful gift.  I saw my baby’s perfect face.  I immediately fell in love with his chubby cheeks, his pudgy nose, and his little fingers and toes. After that day, nothing anyone said could deter me. I loved this baby and I was committed to helping him have a wonderfully fulfilled life.  It didn’t matter what people had to say at that point.  I was keeping my baby.

Fighting through the negative sentiments and naysayers was the best choice I could have ever made. After Stuart’s birth, I connected with Child Find and arranged for services to be provided in our home.  Contrary to what I was told, Stuart walked at 14 months old,   ate everything he was given without any problems, and went to preschool and learned many things alongside other children.

I am not suggesting that all of this was easy.  It wasn’t.  As Stuart entered elementary school, we faced new challenges.  Teachers appeared to be unwilling to creatively meet Stuart’s unique learning needs.  In fact, some members of the educational team made us feel like they did not want to educate Stuart.  These new challenges did not deter me.  I remembered the commitment I made the day I first saw this wonderful child’s face and I did not give up.  Neither did he.

I learned more about special education and the IEP process.  Based upon the knowledge I obtained, I moved Stuart to a learning environment that worked for him.  Today, Stuart is 9 years old and attending third grade.  Most important, Stuart is thriving and learning.  He is eager to go to school and his education team embraces his unique strengths and abilities.

Stuart is one fantastic guy. He keeps me laughing and learning.  If I am having a bad day, Stuart says or does something that instantly brings a smile to my face.  He is truly my blessing from God.

Stuart enjoys reading books, watching movies, and playing video games.  He also loves to play baseball, roller-skate, box, and swim.  Stuart is also a big fan of his brother on the basketball court.  No one cheers for his brother louder and with more enthusiasm than Stuart.

Stuart is a huge part of our family and we love him more and more each day.  He has a smile that will light up a room and a personality as big as the sun.

About the Author: Shelvia lives in Newark with her two sons, Solomon and Stuart. She is board member for the Down Syndrome Association of Delaware. She is often seen leading DSA of DE social events, like the egg hunt and Valentine’s dance.

21 Stories for WDSD- Down syndrome is like a fingerprint

Down syndrome is like a fingerprint

What do we know about fingerprints?
We know they are unique to each individual, and so it is with Down syndrome (Ds). We know that each person with Ds has an extra chromosome on their 21st pair, but what that means to each individual person is different. We know that having this extra chromosome can cause many things, but not the same thing for each person. We know it can lead to intellectual and physical challenges, but we cannot say that it effects each person in the same manner or at the same time. We at best can say, “An individual has Down syndrome,” just as we might look at a typical person on a plane next to us and wonder, “How did he get to be taller than me?”

This issue is our perception or point of view. Much of our lives are governed by our points of view, our observations, life experience, and this is the point I wish to convey to all of you today. “Don’t get trapped in your perception! It might just limit your view.”

Jason is my third child and he has Down syndrome. He is the baby of our family, but he surely is not a baby. We should not treat him that way (sometimes we forget this). Sometimes we assume if we speak louder Jason will hear us better, but Jason has no hearing issues.

What we sometimes forget is that more than anything else is that he is a teenager. If, for just a moment, we think back to our older children, we would realize they use to (and now that I think of it, still do) give us the “eye roll” that says, “I heard you just fine, I just have no plan to do it your way.”

I like to call it the perception trap. I learn every day that Jason understands more, and can do more then I might think. Whose fault is that? It surely is not his. I have also learned that I should not let myself fall into this trap or underestimate him, as it plays into Jason’s favor each and every time.

He knows exactly what he wants and acts decisively with purpose if it is something he plans or wants to do. If I am directing him to do something there always seems to be some hesitation as he is eyeing me up to see just how much I will do for him. Who really is at the disadvantage here?

I guess the thing I most wish to share during this month leading up to World Down Syndrome Day, is this: Just maybe we might be stuck on our own perception of what a person with Down syndrome can accomplish, or what they should be? Maybe it is not them that needs to conform to our thinking, but rather, maybe we as a people have to be more empathetic, compassionate, understanding, and respectful. Maybe we just might figure out that they know, contribute, and accomplish a lot more than we do, and that they’re smart enough and humble enough not to show their hand all of the time.

My advice, if I am at all qualified to give any, is this: Keep your eyes wide open. Learn to accept it is our perceptions that might not always be correct. Learn to watch without pre-judgment. In doing so, we might learn that every individual with that little extra on their 21st chromosome is probably a lot more than anyone might have expected. Always remember that each individual with Down syndrome has a fingerprint in life that is every bit as unique as every other persons’ in the world, and we should always be mindful of the great contributions they can and will make within our community and in our lives.

About the Author: Dave Gazzillo is the current President of the DSA of Delaware. Married to Jeanne, and the father of three, Jason being the youngest (Ds). Dave is a Senior Vice President of Statement Marketing operations at Bank of America. Through vision and leadership we hope to grow and mold a better more inclusive world one step at a time, so that all can participate and share.

21 Stories for WDSD- The Jastrebski Journey

March 7th- The Jastrebski Journey

When Lauren asked me to do a blog entry, I immediately thought of the article I did when Marc turned 18, and voted for the first time for President Obama.  But alas, I can’t find it, and so much has changed since then, maybe it’s for the best!

I remember vividly the births of all my children, but Marc was my first.  He was due on April Fools Day, 1989, and showed up on April 5.  Finding out his diagnosis, and his medical issues, was very hard.  I had some exposure to people with Down syndrome but not with heart issues, and honestly I cried so hard I wasn’t sure WHAT to feel.  And then I looked at that little face.

Read More

21 Stories for WDSD- Boxing and Down syndrome

March 6th- Boxing and Down syndrome

Teaching anyone anything can be a challenging task. Whether you’re school teacher, a college professor, a baseball coach or, in my case, a boxing instructor, you’re constantly tested on your knowledge, proficiency, language and interpersonal skills on a daily basis.  Over time you hone your craft, adapting your teaching style to fit every individual that comes in with an open mind. Never, have I been tested like I have been when instructing our boxing program for individuals with Down syndrome….and I’m much better for it. When I look back at the teacher I was before and the teacher I am now, the difference is night and day.

Read More

21 Stories for WDSD- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

March 5th- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

I will never forget that moment the doctor woke me from a nap to tell me my son has Down syndrome. It was not during my pregnancy, or at the hospital when he was born, or even at his follow up doctor appointment. In fact, it was only after he had been hospitalized for RSV, been diagnosed with congenital cataracts, and I had been told he had a heart defect that would require open-heart surgery to repair. It was not even until he was about three weeks old.

For an entire pregnancy and after being handed a perfectly healthy baby boy, I found out I was living a lie. I don’t think I have ever been so betrayed by life as this made me feel. I felt like I was standing in the room of life when suddenly I found myself flat on the floor, as if the very ground I was standing on had been snatched back from under me leaving me stunned, choking on the breath I was struggling to take.

Read More

21 Stories for WDSD- Love Deeply

March 4th- Love Deeply

Ryan Callahan was born on April 1st 1986. On April 2nd, 1986, we learned that he had Down syndrome. For the next 31 years until his passing on January 20th, 2018 he was the light of our lives, but he had the most stubborn soul. He was our gentle giant who always had a ready smile and a wave. While Ryan had very limited verbal language, he managed to get his point across effectively….usually. As far as he was concerned he was communicating clearly, we all had a hearing problem. His sense of humor was all his own. Despite his disabilities, his ability to understand and use sarcasm was unparalleled. He could tease and aggravate with the best of them.

For the life of me, I could never figure out how he didn’t have the skills to take out the garbage, but could figure out how to open facebook on a smartphone and find pictures of himself and his friends. As any parent of a child with a disability I worried that he would be left out and have no friends.  I realize now that was a waste of good worrying. When Ryan was seven he started to play Little League Challenger T-Ball. Shortly after, he got involved with Special Olympics. Over the 25+ years that he was involved with Special Olympics he played unified T-Ball, did Soccer skills and Tennis skills transitioning on to Track, Volleyball, Basketball, Bowling in the winter and Summer Fun League, Powerlifting and Golf. He had a sport every season with some seasons overlapping. In the last few years he started to go the HAC Fitness Fridays working out every Friday at the Hockessin Athletic Center. Most recently he took up boxing which was offered by the Delaware Down Syndrome Association. He loved them all, but I think his favorites were Bowling and Boxing. Ryan had a habit of standing on the outside and waiting for someone to invite him to join in. I would get frustrated and we had many a talk after practice on the way home about how he needed to stop doing that. That was a one sided conversation as Ryan had his own plan.

Read More

21 Stories for WDSD- The Diagnosis

March 3rd- The Diagnosis

It was Spring of 1969. I was a third year medical student doing a Pediatrics rotation. For 1/2day a week I was assigned to shadow a private pediatrician whose office was West Side of mid- town Manhattan. His practice was almost exclusively upper middle class and upper class New York children. (He helped out each month –unpaid- at the “clinic” for underinsured children at the pediatrics service at the hospital).

One day he said that he had to go to the hospital to see a newborn baby who was felt by the hospital staff to have Down Syndrome. So we took a short cab ride to a prestigious Manhattan Hospital to see the new baby.

Read More

21 Stories for WDSD- Lessons Learned from my Brother Michael

March 2nd- Lessons Learned from my Brother Michael

I was in first grade when my brother Michael was born.  He is 58 years old, the youngest of six children and he has Down syndrome.  As the youngest child, my siblings and I doted on Michael.  We all fought to play with him and teach him new things.  My brothers loved playing sports with him like football and basketball in our back yard.  As Michael got older, my sister and I loved to pretend that we were his teachers and he was our star student.  All through the years the five of us thought that we were teaching him so many new things.  The irony in that is Michael has taught us more in his 58 years than we could ever teach him.

Read More