Winning Attitudes
Little Matthew Kane goes to therapy six times a week, attends school and has a big brother who gives him additional "therapy" in imitation of the therapists that have been a huge part of his life. The boys are two years apart and adore each other.
His mom, Barbara, takes life in stride, shuffling both boys to school and appointments in addition to being a full-time student herself.
"I'm studying child development because I want to work in Early Childhood Intervention," she says.
The entire family shares this "can-do" attitude. Don is a soldier at Fort Hood in Killeen, Texas, and has managed to be there for all of his son's surgeries, which tally up at around fifteen. He takes over the minute he gets home from his job so that Barbara can attend night classes. It's teamwork at it's best.
Barbara is generally happy with the services they've received so far, and with finding sitters so that she and Don can go out together on a regular basis. Despite a laundry list of special needs, life is good for this couple. Not surprisingly, little Matt follows his parent's example.
"Matt's greatest strength is his attitude," Barbara says. "He loves attention from people and the other kids in school. He is almost always happy and has a great sense of humor. He makes it fun to work with him. He has a good attention span that lets him focus and work."
That work includes learning to walk with a walker and to eat by mouth--he's still mostly fed by a tube in his stomach. His challenges are a result of a deletion in chromosome number two, an extremely rare occurrence. He is microcephalic, has Pierre-Robin Syndrome (cleft palate and small lower jaw), and low muscle tone.
"He's a strong, healthy boy who hardly ever gets sick," his mom is happy to report. He is using some sign language to communicate and is working with PECS (a sytem that uses flash cards). He's also working on sleeping through the night.
"The biggest problem at night is that Matt has sleep apnea since his tracheostomy came out when he was two years old. He needs a cpap (a device to keep his airway open) at night and hates it, so he takes it off and we have to get up and put it back on all night long," Barbara explains.
Her perspective on living with disability is realistic as well as optimistic.
She sums it up this way, "I don't grieve for the loss of what Matt could have been or for the things that he will not do. Matt is Matt, not a 'poor' child who lost something. He is just Matt with all his strengths and weaknesses. I think some people assume I cry daily over Matt, but it's just not that way. I don't think about if he will drive a car, I work on getting him to walk independently, I'll worry about driving when he turns 16!"
Written by Carolyn Murray
