A Different Kind of Normal, Part 1
Written By Charlotte Meryman
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Jimmy also has Alfi's syndrome, a rare disorder (the University of Chicago, a leader in the research, has registered about 200 cases) in which part of the ninth chromosome is missing. Also known as 9p minus, deletion 9p syndrome, or monosomy 9p ("monosomy" means one chromosome short of a fully matched set), the condition is colored by physical and mental delays. The challenges vary from child to child, due to which portion of the chromosome is affected.
Jimmy has been fairly lucky on the physical front, although he does wear ankle braces to correct his badly turned-down feet. It's his low muscle tone that poses the most problems - especially when it comes to his speech. At age 4, he still cannot form any words, much less whole sentences. He manages only a few basic sounds, such as "guh" and "ma," which can mean many different things depending on the context.
His difficulties are magnified by the fact that he also has autism spectrum disorder, a brain disorder that interferes with his ability to learn, communicate, and form relationships. It's still unclear whether the autism is tied to Alfi's syndrome. Jimmy has always been affectionate with close family members. But when it comes to kids, "he could care less about being part of the group," says Michelle.
It's a quality that hits Michelle very hard. Trim and put-together - she was a golf pro before she became a mom - she favors pastel shirts, khakis, and pearl stud earrings. But her conventional attire belies a lifelong sense of being an outsider. Born in the Philippines to an American serviceman and a Filipino nightclub singer, she moved with her family to Texas when she was 7. From then on, she says, she's always felt different, "being a child who's not completely white, not completely Asian." By college she was so self-conscious, "I used to put makeup on for an hour and a half before I left my dorm room."
Living now in Jim's affluent, mostly white hometown of Longmeadow, MA, hasn't helped. "I'm just some goofball from Texas!" she laughs. "I get nervous around these successful people and their wives." Raising a child with special needs has made her feel even more set apart. But it's also transformed her. "She's been forced to represent Jimmy at all turns: at school, at the doctor's office, in play groups," says Jim. She's blossomed from a timid, reserved woman into a bold advocate "who will do whatever her son needs."
"I can take anything," Michelle concurs. "I can take Jimmy being slow; I can take him not knowing anything academically. I just can't take his having behavior issues, because if he can't interact with society, what kind of life could I hope for him?"
