Emily Dreyfus & Max Walters
It’s 11:30am on a recent Friday, and the tables in the Venable Elementary School cafeteria are packed tight with kindergartners having lunch.
Sitting amid the happy chaos, a small brown-eyed blonde child named Max Walters smiles and chats with the children around him while picking halfheartedly at his typical school lunch of chicken strips, tater tots, and soggy peas.
But though Max, who just turned eight, participates in all the activities of his classmates and counts many friends among them, one thing sets him apart: he is the only child at Venable with Down syndrome, also known as Trisomy 21, a disorder caused by three rather than two number 21 chromosomes present in every cell of the body.
Individuals with Down syndrome have certain characteristics: a flat facial profile, small nose, upward slant to the eyes, enlargement of the tongue in relationship to the size of the mouth, and low muscle tone, among others. Children born with the disorder also have a high incidence of heart defects and varying degrees of mental retardation.
Max’s mother, Emily Dreyfus, says that while Max is doing extremely well for someone with the syndrome, his life hasn’t always been smooth sailing.
Though she underwent prenatal screening while she was pregnant with Max, her firstborn, neither the Alphafetaprotein screen nor an ultrasound detected the problem. At age 32, Dreyfus was under the recommended age (35) to have an amniocentesis, which carries a small risk of miscarriage. In fact, Max was five days old before doctors delivered the news of his disability to Dreyfus and her husband, Neal Walters, a lawyer.
While the diagnosis came as a blow, Dreyfus, a self-described activist who now works part time as Community Education Coordinator of the JustChildren program at Legal Aid, and Walters soon threw themselves into learning everything they could about the disorder.
When he was 16 months old, local doctors misdiagnosed Max’s heart problem, so Dreyfus and Walters took him to specialists at the Children’s Hospital of Philadelphia where he underwent open-heart surgery to replace a missing valve.
And when the City wanted to put Max into the special needs program, which separates children with mental retardation from their normal-intelligence peers, Dreyfus and Walters stood their ground to have him mainstreamed– and eventually won.
This is Max’s second year in kindergarten at Venable, and Dreyfus, who volunteers in his class each Friday, says he’s learning how to read, write, and add alongside his classmates. She praises the teachers and administration for working with Max and treating him like the other children.
Being fully included in a regular class offers social benefits as well, his mother points out, since he can be around children with age-appropriate behavior.
“Max is a really interesting kid,” she explains. “He has lots of behavioral characteristics influenced by Down syndrome, but some are just his personality.”
Like other individuals with Down syndrome, Max is extremely affectionate. He hugs, kisses, and strokes people in close physical proximity, but occasionally his touching becomes too rough. Though even at these times his intention is affection, his mother gently but firmly corrects him, explaining the proper way to greet someone or express his feelings.
She also has the opportunity to work with him at home, where Dreyfus says Max and his four-year-old brother, Sam, who does not have a disability, have the occasional sibling spat.
As for Max’s Down syndrome causing tension between the two brothers, Dreyfus says, “There haven’t been problems yet. It’s like we have a four- and a five-year-old developmentally.”
She knows that Sam will eventually overtake Max in development, but “for now, Sam idolizes his big brother,” she says. “It’s good for Max’s ego.”
And as for herself, Dreyfus says, “You learn to cherish the good and the tough. We’ve had so many positive outcomes… and my life is richer because of it.”
These last eight years have been “a learning experience” she says, and she knows now to take it one day at a time. “I don’t worry about what’s going to happen when he grows up,” she says. “We’ll deal with that when it happens.”
Right now, she says, the good far outweighs the bad. As kindergarten lunch at Venable comes to an end, Dreyfus and Max walk down the hall, as they do every Friday, to visit the first graders who were Max’s classmates last year.
As Max runs from table to table, giving hugs, smiles appear on the children’s faces, and a near chorus rises up: “Hey, Max, over here!” “Hi, Max!” and just “Max!”
Right now, his mom says, Max is doing just fine.