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Meet a Child with MECP2

Meet Liam - One of the Boys

Liam is a 9-year-old boy who lives in Milwaukee with his family. He spends the summers in Germany, with his family and many cousins. He really enjoys the time he has playing with his male cousins that are close in age to him. Wendy recalls her joy at seeing the cousins running around the property, and Liam having a huge smile on his face, enjoying every minute of this rough and tumble play!

Liam has two sisters. His older sister is very knowledgeable about MECP2 and his medical needs. She cares a lot for Liam, and is very protective of him. His younger sister likes to play with him, especially while having her tea parties. “He enjoys doing his own thing,” says his mother, Wendy. “He likes to sit on the floor and look at books and play with toys.” He always is happy to see people and will engage with them in his own way. Liam really loves books, and he loves when people read to him. Liam is nonverbal, but will make noises that clue Wendy in as to how he is feeling. “He’s a noisy guy,” she says, “I can usually tell if he is happy or sad, and he has been happy 95% of his life.”

Liam is in 3rd grade and spends most of the day in regular education classes. “Assuming competence” has been an important mantra in Liam’s family. Liam attends social studies and science classes with his peers and his teacher provides modified material so he can access the curriculum. Liam has some pull-out time for one-on-one instruction for math and reading. He has a 1:1 paraprofessional with him during the school day to keep him safe and on-task. The occupational therapist provides some services within his regular art class and additional services for self-feeding and eating different textures. He receives PT services twice a week where he gets into gait trainers to do some walking and spends time in a stander, which helps with lung expansion. It is also a great time to communicate with him.

Liam receives speech services three times per week. The Speech-Language Pathologist (SLP) has worked with Liam to communicate with an electronic AAC device called the Tobii Dynavox, which is a computer system made for communication purposes. He uses his eye-gaze to navigate the device and communicate. Once a week, Liam is part of a group speech therapy session where he practices using his device to communicate with his peers. Wendy notes that he loves looking at the page with emotions in his Tobii, and using it to tell people how he feels. He also likes to look at the faces, and sometimes he just enjoys experimenting with the language in the communication device. Wendy specifically remembers a day when Liam was sick and had to stay home from school. He got her attention with his eyes, and used his device to communicate, “sad, sad, sad,” and then navigated into a new page to say, “school, school, school,” and Wendy understood perfectly. He was saying that he was sad to be missing school.

When he was younger, Liam breastfed for almost 3 years because he could not drink from a cup or bottle. He eventually started eating regular food and thickened liquids and is still totally oral-fed. In the past, he often became congested, and this would create hesitancy to swallow. His congestion would often turn into respiratory infections that would require supplemental oxygen. Eventually, he got his tonsils and adenoids removed, which Wendy described as “miraculous” for him. He can handle sickness much better now, but still has difficulty with feeding and swallowing due to low muscle tone. Liam had major dental surgery at age 8 and Wendy feels it caused Liam some emotional distress and developmental regression. Since the surgery, Liam has stopped crawling and sometimes “pockets” food in his mouth while eating. In spite of this, Liam continues to be his happy self, and the family continues to stay positive.

It is clear that Liam has a positive impact on his classmates at school. Some of the boys love to sit with Liam at lunch and even though they do not watch Thomas the Train anymore, they talk with Liam about it because they know it is one of his favorite things. A young girl in class who has dyslexia was paired with Liam as a reading buddy. Before this, her parents said she would cry and not want to go to school, but this all changed when she was paired with Liam! She started reading at home more and told her parents she needed to practice so she could read good stories to Liam. She said that she loved reading to Liam because he didn’t make fun of her, and that he was her best friend.

Advice to Teachers:

  • It is important to always assume competence. Children with MECP2 may not always look like they are listening or understanding, but they often are.

Advice to Parents:

  • Make sure the school is aware of the MECP2.
  • Be your child’s advocate.