The CdLS Blog

We're Anabel and Joey, parents of Ophelia Perez, a strong-willed, always happy, and playful little girl. Naturally, when asked to become Regional Coordinators in Florida, we jumped at the opportunity. Ophelia "Ophe" was diagnosed with CdLS at age 4; before her CdLS...

By Izaak's family Izaak is small, mighty, and thinks he’s our boss. He embodies a colossal presence, captivating those around him with his indomitable spirit and unyielding determination. Despite his small size, he commands attention, not through volume or...

By Shaun Heasley DisabilityScoop.com As the holiday season kicks off, kids with autism and other disabilities will have a chance to visit with Santa Claus without all of the usual chaos during a series of special events across the country. So-called Santa Cares events...

By Courageous Parents Network courageousparentsnetwork.org/ Practice simple traditions that are easy to execute and feel meaningful. There is no one way or right way to celebrate. Set perfection aside and decide what is important to you. It’s okay to say no to old...

By Julie's Family Julie is 45 years old, loves to go for walks, horseback ride, swing in her hammock chair, and hold hands. She has two brothers, Mark and Thomas, one sister, Jane who has run for Team CdLS for about 15 years. She lives in a group home with two other...

By Shaun Heasley www.disabilityscoop.com In a first-of-its-kind move, a popular theme park will offer a discrete way for visitors to alert staff throughout the park that they may need extra help even if their disability isn’t apparent. Sesame Place Philadelphia said...

By CdLS Foundation Clinical Advisory Board (CAB) How often should the child’s teeth be brushed? Is there a particular toothbrush recommended? All individuals with CdLS should have their teeth brushed (or brush themselves) at least twice a day. An electric toothbrush...

By The Understood Team Expert Reviewed by Keri Wilmot, understood.org For many families, food plays a central role in holiday celebrations. That can be tough for kids who are sensitive to the tastes, smells, sounds, and textures of foods. Kids with food sensitivities...

By Erin Croyle parentingspecialneeds.mydigitalpublication.com You know the old adage, “life is a marathon, not a sprint.” For parents like us though, life is a marathon AND a sprint, often with no water breaks. Relentless. Despite our best intentions, we end our days...

By CdLS Foundation Clinical Advisory Board (CAB) Behavior (aggression) You asked: Our 5-year-old is very aggressive in school. When they don’t do what she wants, she tends to react very aggressively. What is happening with her? We don’t know what to do. Sometimes I...