Child sees support from elementary school

KYLE — As Mike and Maggie Cook sit across the table in the Science Hall Elementary School faculty lounge, they talk of their brilliant children: one who works for the National Security Agency; one who is a pilot in the military; and one studying toward a degree in college. They say that their youngest is also intelligent, it just isn’t as obvious to others.

Matthew is an eleven-year-old diagnosed with Angelman syndrome and he’s been educating others on what that means for International Angelman Day on Feb. 15.

According to the National Health Service, Angelman syndrome is a rare genetic condition — approximately one in 15,000 children is diagnosed — that affects the nervous system and causes severe physical and learning disabilities. Children who have Angelman syndrome will begin to lack the typical developmental milestones. Maggie noted that this is the first sign that she and Mike noticed. Doctors initially diagnosed him with Global Developmental Delays, though, this did little to ease their worries as months passed with no improvement. At the age of two and a half, Matthew was still unable to speak or walk.

“Before undergoing genetic testing, we had exhausted all conceivable medical examinations and our pediatrician had hinted at Angelman syndrome,” explained Maggie. “We conducted online research, seeking out distinctive physical, mental and developmental indicators associated with Angelman syndrome [to educate ourselves].”

Thus began the long journey ahead of them. Maggie stressed that it has not been easy for their family due to several factors, but both she and Mike are putting their all toward Matthew’s future and comfort. She stated that if they struggle to find a physical therapist, they’ll find physical therapy their own way; they purchased a two-story house to know that Matthew will always be able to work on his leg muscles. She and her husband traded their habitual sleeping routines to take night shifts to ensure that Matthew is able to sleep without erupting into a seizure.

“At first glance, people can never tell that our Matthew is any different from other [children]. No matter where we go, complete strangers are always making the same comment: ‘That’s the happiest little boy I have ever seen’ because he always has a smile on his face, but when they get close to him — because of his sensory issues and his lack of ability to verbally communicate, he erupts or hits them instead,’” reads an entry on their website.

Maggie recalled a story of when her family went on a cruise. Matthew wanted to ride in a specific elevator and once fixated, it’s difficult for him to change course. This meant that each time the other elevators opened and people loaded inside them, he was largely upset. She stated that many individuals around her said that Matthew needed to be disciplined due to acting out. It’s difficult because these assumptions are due to lack of education. This is why the Cook family began its blog to bring Angelman syndrome awareness: “People tend to be open minded of hearing what you share on [a] disability they are familiar [with] versus an unknown disability.”

“Our blog documents our journey, encompassing our travels and the unseen daily challenges we face. It’s a reminder that disabilities aren’t always visible and we aim to raise awareness that just because something isn’t apparent, doesn’t mean it isn’t real,” explained Maggie. “We also stress the importance of inclusion, acceptance, tolerance and kindness.”

Inclusion is what the presentations that Matthew has held across the SHES fifth grade classes the week of Feb. 12 focused on. Matthew, with the help of his teachers, has spent 30 minutes each day teaching the students about Angelman syndrome and how it is important to accept each other’s differences.

After each presentation, students were excited to give Matthew a high-five and color cutouts in the shapes of hands, which were then put together to create angel wings on the school staircase — the symbol for Angelman syndrome. Children who wore blue on Feb. 15 were able to vote on teachers to get a pie to the face at the end of the school day.

The overwhelming support Matthew has received from SHES has been amazing, explained Maggie. In the past, schools have ignored the pleas of the Cooks to bring Angelman syndrome advocacy to the campus, whether that be saying no or failing to read the emails they sent. This has been the opposite at SHES. Faculty was clothed in blue and had all-hands-on-deck for International Angelman Day. From the fifth grade teachers to special education teachers and leadership, all were there to support Matthew and his family.

“SHE[S] stands out as an educational institution that has warmly embraced both our family and our advocacy,” she said. “Every transition brings a degree of uncertainty … However, we feel incredibly blessed to have Mrs. Jennifer Roberts as Matthew’s fifth-grade teacher. What makes her exceptional is not only her role as a special education educator, but also her experience as a mother of a child with special needs.”

The Cook family stressed that education is the beginning of acceptance and understanding. To learn more, community members can visit their blog at www.angelman.blog or the Angelman syndrome Foundation at www.angelman.com.

“Many parents of children with special needs already feel isolated due to the inherent difficulties of raising their children and encountering people who are unsure how to respond or who are judgmental only compounds these challenges,” Maggie said. “The power of our collective voices is amplified when the community demonstrates its support.