Archives by Month: March 2019
Ben is a charming, sweet, 19 month old and recently graduated from our Early Intervention program. Ben loves swimming, playing with his older brother, and reading books. At two months old, Ben’s parents were referred by their doctor to DCBDD to receive services through Early Intervention. “When you hear developmental disability, your brain immediately goes to the dark side,” shared Ben’s mom, Maura. As scary and overwhelming as this news was, Ben’s family was immediately surrounded by support.
When Maura met Ben’s DCBDD Service Coordinator she said she immediately felt like family. She walked them through the process of navigating the system and accessing the support Ben needed. We asked Maura what advice she would give other parents and she said, “You’re building your toolkit. Put your trust in the team, they know what is best.”
Supporting Ben in his goal to learn to walk was a true team effort. Ben’s older brother Patrick enjoyed helping Ben with his strength exercises. Patrick would places stickers on Ben’s toes to encourage him to reach his toes. Now, Ben is so mobile it is hard to keep up with him!
Maura and her husband felt very supported by their Early Intervention team. “They helped us find tools and solutions,” said Maura. “They helped us find a helmet for Ben and really expanded our knowledge base of available resources.” Maura felt like the tools they received were practical and easy to work into their everyday routine.
“He has more independence. We are grateful for all the possibilities out there for him now,” shared Maura.
We are so proud of you, Ben! Keep up the great work!
Last year during the holidays, the Glenross community organized a spectacular light show. Over 130 homes participated in this synchronized display of holiday lights. According to NBC4i, “the display took more than 500 hours to set up and program.” While the free light display for community enjoyment would have been enough, the neighbors took it a step further. Hoping to support one of their own neighbors, the community accepted donations from visitors who came to see the light show. Together, they raised over $2,000!
So who is the neighbor who benefited from this amazing display of community generosity? Let us introduce you to the star of the show, Miss Lucy. To the outside observer, Lucy is your average three year old. She loves books, birthday cakes, and playing with her siblings. What you can’t see, is Lucy’s extremely rare mitochondrial disorder known as NUBPL.
According to the NUBPL Foundation’s website, “NUBPL is a progressive neurodegenerative disease that affects children. There are zero FDA approved treatments for this disease.” The severity and impact of NUBPL is different for each person. With no current cure or even treatment available, families of children like Lucy are left to raise money to fund more research.
We asked Lucy’s mom what advice she had for other parents. She shared three important tips: 1. Spread awareness; 2. Connect with other families; and 3. Don’t be afraid to share your story. “We have many people on this ride with us and we have a great community,” she said.
Lucy’s family was overwhelmed with gratitude for their neighbors’ generous idea to turn the Lights of Glenross into a fundraiser for NUBPL. To read the full Lights of Glenross story, click here. To follow Lucy’s journey, join her Facebook Group We Love Lucy – NUBPL Warrior.
This heartwarming story of community is just another example of how we are #BetterTogether.
Like many six year olds, Caden is very interested in Ninjas! As Caden’s parents thought about different activities he might enjoy, they thought karate would be a great blend of physical activity and his love for ninjas. Caden’s mom called a few different dojos to see how they would feel about having a child with Down syndrome in one of their classes. After receiving a variety of responses, she was excited to receive the Delaware YMCA’s response that they’d be more than happy to have Caden join their class.
Caden has been practicing martial arts for just over a year at the YMCA. “The YMCA worked with us to develop a plan specifically to help Caden reach his goals,” explained his mom. While the YMCA’s plan is very individualized, Caden works on his goals by participating in classes with typically developing peers and is held to the same expectation as the other students.
We asked Caden’s mom what advice she would offer other parents and she said, “Don’t put limits on your kid and set high expectations.”
From breaking boards, to sparring with his older brother, to the “cool” outfits, Caden enjoys all of the elements associated with martial arts. While Caden has a lot of fun in his class, they also talk about very serious topics such as bullying and getting away from bad guys. “Caden doesn’t know stranger danger,” explained his teacher. “That’s a very real concern. We teach him how to get away from a bad guy.”
Caden loves to compete in martial arts competitions and has done quite well! “at the December tournament he earned a first place medal in board breaking, and a second place medal in self-defense against typical peers,” his mom proudly shared. We had the opportunity to observe Caden in action at one of his practices. At the end of the practice it was Caden’s turn to test for his next belt level and with no surprise, he earned it!
These classes cover more than just physical exercises. They learn about the origins of martial arts, responsibility, and respect. “Those behind us are learning from us.” This phrase is an important teaching point in the class. “Caden has made a lot of progress since starting martial arts,” shared his mom. “Outside of class he is more engaged and developed better listening skills.”
We celebrate the inclusive opportunity the Delaware YMCA has created for kids of all abilities to develop healthy skills. Congratulations to Caden on his latest martial arts achievements! Together we are #BetterTogether.