DSA of DE 2020 Sibling Program

The DSA of DE is going to offer a sibling workshop in 2020, details below. This is a program for siblings of individuals with Down syndrome ages 6 and through adulthood. The program will be lead by trained instructors and only siblings are allowed in attendance, parents and individuals with Down syndrome are not included in this workshop. Please fill out this interest form if you or your child is interested in the program. Brothers and sisters of those with Down syndrome tend to be compassionate, understanding, wonderful people. But we also know that being the brother or sister of someone with Down syndrome can have its tough times, too! These workshops will guide brothers and sisters through questions like “What is Down syndrome?”; “What do I do if I’m jealous of my brother or sister with Down syndrome?”; or “What will my brother’s or sister’s future look like?”

Workshops provide the opportunity for a lot of concerns to be addressed and feelings to be validated. Brothers and sisters will learn they are not alone in their experiences, while gathering some good strategies for how to cope with some difficult times with their brother or sister. It’s a time to learn, grow, and celebrate our community of brothers and sisters!

 

Interested? Fill Out This Form

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

Fall Weekly Programs Begin! 

It is hard to believe that summer is almost over! We are excited to start back up our weekly programming, held throughout the year for individuals of all ages. If your family is interested in participating in any of the programs, please contact Lauren at info@dsadelaware.org or 302-995-1004.

Boxing- Classes start back up after summer on Tuesday, September 11th! Come try the first class for free. Held weekly at Knockout Boxing in Newark on Tuesday nights. Middle school aged class for children from 5:30-6:15pm and an adult class for those high school aged and older from 6:30-7:30pm. $75 discounted fee for DSA members for three months, includes boxing gloves.

Exercise Class- Classes start again on Friday, September 7th. Held weekly at the Village Gym in Middletown on Friday nights. Open to individuals 13 years and older. Class runs from 4:30-5:30pm. Price will depend on how many people participate, but will range from $5-$10 a class.

The Little Gym- The fall schedule has started! For children 4-12 years old. Pick a class that fits with your child’s age from the schedule found HERE. DSA will cover the cost for DSA members. The Little Gym is located in Hockessin/Pike Creek.

Gymboree- Held at Gymboree Play & Music of North Wilmington & Glen Mills weekly on Wednesday evenings from 6-6:45pm. For children under 5 years old. DSA will cover the cost for DSA members.

Annual Dinner 2018

Last night we had a memorable evening at our Annual Dinner & Elections at the The Delaware Contemporary. Catering was provided by Sherm’s Catering. We were able to reflect on our accomplishments this past year and celebrate with dancing and good conversation.

We honored two board members wheos terms ended, Kimberly Finn (who is also our Buddy Walk Co-Chair) and Jim Kelly (who will remain with us as an at-large board member)

We are proud to announce two new board members: Tahita Muhammad and Susan Scott. https://www.dsadelaware.org/about-us/board-of-directors/

In addition, we presented awards to several outstanding community members who support our organization. Susan Scott, Jean Beck, Representative Melanie George-Smith and Milford Moose Lodge. Thank you for your dedication to the DSA of DE!

21 Stories for WDSD- Unconditional Love

Unconditional Love

Written by Ryan Pickett

Upon finding out that we were blessed with a daughter with Down syndrome we were told of the many things we should not expect of her.  Hopes and dreams seemed to come to a cruel halt before her life began, replaced with worry and fear.

What the experts forgot to tell us were the many wonderful things we would have, some gifts far greater than we could ever imagine.  If I knew then what I know now, those fears would have melted away, just as our perceived expectations had in the very beginning. 

I cannot speak for all parents of children of Down Syndrome, I was only blessed with one.  But I think back to those early fears and they seem so minute compared to the many gifts our daughter Kenzie has given us, none greater than the gift of Unconditional Love.  

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21 Stories for WDSD- Clinic

I moved to Delaware in 2008, with a few stops between here and Jamaica, to start my career as a pediatric medical geneticist at Alfred I. duPont Hospital for Children.  I inherited the Down Syndrome Clinic from one of my new colleagues and one of my first duties was attending the annual Down Syndrome Association of Delaware Dinner to accept an advocacy award on behalf of the clinic team.  My husband and baby daughter accompanied me to the event and what first struck us was the warmth with which all these families welcomed not only me, but all of us.

Almost 10 years later, I have had the honor of helping to care for many children with Down Syndrome as our patient population has grown and I have said aloud many times, that this is when I feel like a real pediatrician.  I have been fortunate to work with a wonderful physician assistant, therapist, social workers and volunteers from the DSA of Delaware, who play an equal if not more important role than I do.

I have been asked many times if children with Down Syndrome need a geneticist to take care of them, and even though I humbly admit that they do not, it is something I hope will continue for my entire professional life because it has been so fulfilling.

About the Author: Dr. Nina Powell-Hamilton is the current Director of the Down Syndrome program at Alfred I. duPont Hospital for Children. Married to Andrew and mother to Gabby.  Nina is a board-certified pediatrician and medical geneticist. She is pictured above with our two self-advocates, Rachel and Elizabeth, that work with her within the clinic.

21 Stories for WDSD- That Extra Invisible Thing

That Extra Invisible Thing

When I was pregnant with our fourth daughter, Grace, we knew she had a serious heart defect. When Grace was born, all we cared about was the health of her heart and when we could have surgery to correct it. People told us she had “Trisomy 21” and “Down syndrome”, but we really were more concerned with her just staying alive. With God’s help and the skilled hands of surgeons at the Childrens’ Hospital of Philadelphia (CHOP) Grace’s heart defects were repaired and we started our journey with raising a child with Down syndrome.

Grace was about two when we attended a symposium at CHOP and first heard about co-occuring Down Syndrome and Autism (DS-ASD). We heard that this was very rare (about 5% of the total population would also have autism) and it was mostly boys who had this condition. We breathed a sigh of relief, and continued to enjoy our youngest daughter.

Grace was in a combined Kindergarten / first grade class when we had her triennial school evaluation completed. Her speech had stalled for the previous three years. This was despite the fact that we had a very experienced and caring speech therapist. Her Kindergarten teacher also said she suspected Grace had Autism. So – You can see a heart defect. You can see Down Syndrome. No denying any of these. But Autism? In a girl? This was super easy to deny! And we would surely get proof that she did not have Autism.

We played along with the school and had Grace evaluated by the Delaware Autism Program (DAP). We also got on the waiting list at Kennedy Krieger to see the expert in this field. We were amused … and confused… when DAP came to observe Grace at school. It was time to stop working on something and Grace showed the hand to her teacher and said, “Not now darling, I’m busy!” That was definitely a moment of brilliance which disqualified her from going into the DAP program – and affirmed our hopes. Then Dr. Capone gave her a diagnosis of PDD-NOS and we added Autism as an IEP classification – and kept doing what we had done before.

What do you do with an invisible diagnosis? I was too busy getting this Down syndrome thing down to become an expert at something else. Besides Grace just didn’t do a lot of things I read kids with Autism do – at least I wasn’t ready to admit any of it. So – we took Grace to be evaluated – again. At CHOP and AI DuPont Hospitals. They all confirmed the diagnosis.

It took us a long time to turn denial into action. When Grace was still not reading by third grade, we had an Independent Educational Evaluation and finally started to ask the school for meaningful changes in Grace’s IEP. It was not until 6th grade that we switched to an Autism support setting for Grace. The difference has been phenomenal. Grace went from being a complacent, prompt dependent girl to being vibrant, independent and sassy! She’s different than her peers with Down syndrome and different than her peers with Autism. She has elements of both and some things that are uniquely Grace.

Life didn’t stop when we acknowledged that Grace has co-occurring DS-ASD. Grace has a wonderful time at school and is included in academics as well as after school activities like the school musical. We’re active at home and in the community, and enjoy many sports and social events.

To parents who want to deny that invisible thing – DON’T. Embrace it just like you did the Down syndrome diagnosis. Do your best to get interventions and programs as early as you can. It makes a lot of difference. And be prepared to take the slower, s…l…o…w…e…r  road.

About the Author: Hazel Cole lives in Newark with her husband Robert, Grace, and daughter Lydia. Hazel retired from corporate life to work part-time as a Parent Consultant for parents of children with special needs. Robert was inspired by Grace to become an emergency nurse at Christiana Hospital.  Our whole family feels blessed and improved by having Grace in our lives.

21 Stories for WDSD- Special Friendships

Special Friendships

My son Ian is 35. He has been lucky to have a wonderful group of friends throughout his life. Friendships are so important for our children with Down syndrome and others with special needs. It might not seem necessary to work on those friendships while your children are young and involved in school and activities, but be sure to nurture them along the way.

Ian and Jonathan first met when Ian was 9 months old and Jonathan was 19 months old.   Ian followed Jonathan though school, they were in Special Olympics together, did acting at the Delaware Theater Company, attended dances, parties, and hung out. Through these activities the group of friends became larger and the boys had interest in Powerlifting and WWE . A local wrestling group ECWA came along and gave them a activity to get them out every 4-6 weeks. Without Jonathan’s father Hank,  organizing these outings this wouldn’t be possible.

Hank because the photographer for ECWA and was there at all the meets and so were the boys. ECWA moved their venue far away so the boys got to go to the Boys and Girls Club to see Right Coast Pro Wrestling. They sit in the front row yell, cheer and heckle the wrestlers! They are loved by everyone at RCP wrestling. They know exactly when the next match is! Ian waves his hand over his face saying “You can’t see me”- John Cena’s tag line. That’s how I know the next match is coming.

After the matches, the boys go to Buffalo Wild Wings and sometimes Hooters for one of the boys birthday for “Burgers and Beers”. Just what any typical guys their age would be doing. 

I am truly grateful my son has a network of guys he can call friends. It wouldn’t be possible without the parents of these awesome men. The group started out with Ian, Jonathan, Dominic and David. Later came Marc and Ryan. These are all wonderful guys with amazing families. We were the fist group of “mainstreamed” children. They had friends without special needs along the way.  Our boys lost touch with them when their friends went off to live their “normal” lives. I’m sure knowing our boys touched their lives in positive ways. Hopefully making the world a better place for our communities. My point is relationships our boys have as adults with Down syndrome or other special needs are important for their wellbeing and mental health so nurture those relationships so they have a group of meaningful friendships throughout their lives.

 

About the Author: Cathy Stiles-DeNest lives in Bear with her son, Ian. Cathy is a hair stylist by trade. 

21 Stories for WDSD- Lexi & Lila

I had a surprise pregnancy at the age of 40.  We got another surprise at 11 weeks gestation when we found out our baby had a 1 in 5 chance of having Down syndrome.

We walked into our OB’s office after receiving the news and she asked us when we wanted to scheduled the termination.   After telling her that we would not be terminating the pregnancy she tried to convince us that it would be “right” thing to do.  She went on to tell us that our baby would be a hardship on our family and a burden to society.  We walked out of her office and never went back.
Time went on and there were more complications.  We were assigned to a team of perinatologists for my high risk pregnancy.   At 16 weeks gestation we had an amnio and found out that our baby was a girl and the diagnosis of Down syndrome was confirmed.  We had already decided that if we were having a boy he would be named after my husband and his father, and if we were having a girl she would be named after my mother.  So “the baby” became Lila, and she began to grow even more in our hearts.
Lila had a lot going on!  She had a heart defect (VSD), an issue with her kidneys, IUGR, duodenal atresia, the list seemed to go on and on.    At around 27 weeks gestation, after being a VERY active baby, Lila stopped moving.  We made an appointment to have an ultrasound.   Our amazing doctor told us that we needed to prepare to say goodbye~ that there was nothing he could do and it was all in God’s hands.  He said if it was a healthy pregnancy that he would recommend an emergency c section but that wasn’t the best option for us.  He told us how sorry he was and hugged me as I cried.   My husband and I left his office, sat in the parking lot, and cried together.  We called our parents and told them what the doctor said.  I will never forget what my mom said in that parking lot.  She said, “The doctor is wrong.  She is going to live- I had a dream that I was changing her diaper at your house!”  That may seem weird to other people but when my mom says something like that,  we listen.  It gave us so much hope.
Two days later our little fighter started moving again. Fast forward through a bunch of appointments, a surgery consult, NICU tours, hospital triage visits and one hospital stay, Lila was born at 35 weeks gestation via emergency c-section.   She weighed in at 5 pounds, 5 ounces.  There was an entire team from the NICU in the room and they took her away immediately.
Lila had surgery within 24 hours of her birth to correct duodenal atresia.  Back into the NICU she went, and there she stayed until she was 7 1/2 weeks old.  The day we brought her home is a day I will never forget.
When Lila was 4 1/2 years old, she was diagnosed with hypoimmunoglobulinanemia/Common Variable Immune Deficiency.  She had been constantly sick for about 6 months and our pediatrician told us that it was common for kids with Down syndrome to be sick all the time.  That didn’t feel like an acceptable explanation so when Lila was diagnosed with yet another infection, this time a staph infection, we contacted an infectious disease specialty team and they agreed to see her.  They ran a lot of tests, then referred us to hematology/immunology.  Lila began receiving IVIG treatments right away.  (Always, always listen to your gut)
Shortly after Lila began receiving IVIG treatments, I saw a Facebook post that would change our lives forever.  A baby girl with Down syndrome needed a forever family.  I saw those posts quite frequently and since none of them applied to me (or so I thought at the time) I just kept scrolling.  A week later I was still thinking about that Facebook post.  That baby girl.  I called my husband and we decided it would be ok for me to call and ask some questions.  “I just want to make sure they found a family for her.”  That call turned into more calls and a couple of weeks later I was on the phone with the birth mother of that precious baby girl.  A few weeks after that, the birth parents and the baby visited our home.  .  A couple of weeks after that, we received the call that we had been chosen as the baby’s forever family.  12 days later, we brought that baby girl home and changed her name to Lexi.
There are many details missing from the story I just told.  Some things are just too private and too sacred to be shared publicly.   If we are ever in the same room, ask us about the story.  We both love telling the story of how Lexi joined our family, and how she was meant to be ours.
A couple of awesome details about our Lexi girl’s story:
Lexi was born on my son and daughter-in-law’s wedding day.  Not just on the same day, but during the time the ceremony was taking place.  Our family gained two new members that day, we just didn’t know about one of them until later.
Lila and Lexi seemed to bond immediately.  We are so incredibly thankful for that..  Lexi wasn’t too sure about the adults in the house but she sure liked Lila and the feeling was mutual.
Fast forward to March of 2018:  
Lila is 11 years old and in the 5th grade.  She now receives weekly Hzentra (subcutaneous) treatments for her immune deficiency.   Lila loves to read, sing, dance, listen to music and Facetime her big sister.  She loves animals and loves to learn everything she can about them.  When she grows up she wants to work at a veterinary hospital, zoo or aquarium.
Lexi is currently 7 years old and in the 1st grade.  Lexi is a healthy little girl who is full of life.  She never meets a stranger and loves to learn everything she can about everyone around her.  Lexi loves to write, color, dance and practice “flips” which nearly give her parents panic attacks.  When she grows up she wants to be a Super Hero.
Both girls love to pretend that they are contestants on The Voice Kids Australia and America’s Got Talent.  They take turns performing their acts and being the judges.  If one of them ever tells you that you are “the whole package”, you will know where that came from.   ; )
Lila and Lexi are best friends.  They fight like all siblings do but they love each other fiercely.  We are so incredibly grateful that they have each other.
About the Author:  Linda Nargi lives in Wilmington, DE with her husband Nick and their daughters, Lila and Lexi.  She also has grown children- her daughter Tiffani lives in Colorado.  Her son Justin lives in Virginia with his wife and daughter.  Linda is a stay at home mom who devotes her spare time to learning all that she can to passionately advocate for her daughters with Down syndrome and all individuals with disabilities.