site logo

Meet a Child with Sotos

Getting the Scoop on Koop

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

Growing up in a family of 4, Kooper has many nicknames including, Scoop Mc Lovin, Big Cat and Koop! At age 4, Koop is a cuddly, touchy-feely boy who is growing very tall quite quickly. “He is almost as tall as I am!” says his mother, Rebecca.

Kooper was born about 5 weeks prematurely and had surgery to place a feeding tube at 10 days of age. Due in part to his small jaw, feeding and swallowing were difficult and he began early intervention at 6 months after Sotos syndrome was diagnosed. By two years of age, he was talking and his mother remembers him saying to a cherished pediatrician, “You took my teeth!”  (He had his teeth removed because the enamel didn’t grow well and they decayed.) He was also diagnosed at two years of age with autism. His ability to speak has dropped off but he does nod and he understands everything according to his mother. When he recently saw that same pediatrician, now retired, he climbed onto his lap, stroked his face and gave everyone a chance to see the depth of his care and feelings.

Koop likes women and is very friendly, but on his own terms. He likes to pull people to get them to do something he wants to have done, like change the channels. He nods his head for yes and gets upset when he means no, and uses facial expressions to express his feelings. Since starting on a new medication, he is starting to babble again and mouth words.

Koop loves school and, although he likes watching and being near the other children, he is tentative about playing with them. In his preschool, he has therapy as part of the program. He has many sensory issues and his low tome makes some fine motor tasks challenging so he is working on developing those skills. He is also working with an iPad and loves to read stories and listen to songs. He also has a jogger/stroller to use when he needs it, especially if he needs it for sensory reasons.

Rebecca says they treat him like everyone else in the family. “We expect him to be part of dinner time and his brothers and sister let him know if he needs to shape up.” She notes that he is so much fun and loves to break into dance when he hears music. “He loves to make people laugh!”

Rebecca is finding it helpful to connect with other parents and has friends via a list serve that “took me under their wing” when Koop was diagnosed. These friends, whom she might never meet in person, live in England. Locally, she has become friendly with another mother who lives about 20 minutes away.

Rebecca’s advice to parents:

  • Trust your instincts. She had to work through her fears about letting him go to school and is very glad she did. However, she stayed with him in class for several sessions until she felt they knew him well. She was nervous that the staff wouldn’t know him because he was non-verbal. And she was also fearful that, because of some of his behaviors and his larger size, he might scare the other children.

Rebecca’s advice to school staff:

  • Never be afraid to ask a question to a parent. She knows teachers and therapists have so much knowledge, but “we all have something to learn every day.”