Meet a Child with CdLS

Ben, Political Activist!

GEMSS would like to thank Ben and his mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much! 

Ben sitting with a backpack

If you are ever in mid-coast Maine and see the Lobster Festival Parade marching by, you will probably see Ben with his grandparents strolling with the Democratic party! Ben, age 7, loves people and enjoys crowds. He goes to elections and house gatherings for the candidates and is known by so many people in this seacoast region in Maine. He loves the Art Walks, the Coastal Children’s Museum and he loves school!

As a second grader, he understands far more than he seems to express. His mother hopes that he will be more challenged with his academic development. He is included in the typical classroom for French, art, PE, and field trips and learns other subjects in a Life Skills class where he enjoys working in small groups and receiving one-on-one attention. He is easily distracted, and this has been a great setting for him. He says a few words but mainly uses his Dynavox Maestro (augmentative communication device) to communicate. He is quite proficient at talking about himself says his mother, Dena! He loves to talk about places he has been, family members (especially cousin Isabel) and his friends and teachers at school.

“He is very social - a social butterfly, and is easy-going, smiley,” Dena says.

Ben running

Diagnosed just before his first birthday with Cornelia de Lange syndrome, Ben had an atrial-septal defect that closed but still has an enlarged aorta that is monitored yearly. He has mild astigmatism, will begin wearing glasses this summer, and has tubes in his ears. He has GERD but that is well controlled with Prevacid and diet, although sometimes certain foods can ‘set him off’, resulting in reflux and keeping him up at night. Ben is a light sleeper and sometimes wakes up with the birds at 4 am. He uses a walker to get around or walks independently on his knees.  He has OT, Speech and PT at school and privately.

Dena has met other families who have a child with CdLS and remarks that the variability is so surprising. Their family is hosting a gathering for all New England families on August 24th. Although their state funding for family support/respite has evaporated, they are lucky to have nearby family members who offer a great deal of support to the family, watching Ben and his little brother, Noah.

Ben smiling for photo

Dena describes her relationship with the school team as good. They chat in person about once a week and it is a very nurturing school of about 130 children in K-4. She remarks that both she and her husband are teachers, although she is now running two businesses from her home so she can be home with the children. She feels she has a good understanding of what happens in schools and works to be patient with changes.

Dena has a goal for herself to start speaking up more. Her advice to teachers is “Don’t assume that if a child can’t speak that they don’t understand! He really understands so much and is smart. Although he has developmental delays, he can still understand and learn. All kids are different. You can do research, but don’t assume you know all about the syndrome. Be sure to have conversations with families and be open to having your assumptions changed!”

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