Source: Sherman Publications

‘He’ll know when he has his cap and gown on that it’s a special day’

by Susan Bromley

May 18, 2011

Brandon Twp.- Among several hundred local students graduating next month, Jason Rabideau is unique.

Jason won’t go on to college and he will never hold a job, but like most mothers, Kelly Rabideau is proud of her child and dreams of a happy future for her son, who has Dyggve-Melchior-Clausen Syndrome, a disorder so rare she knows of no other cases in the U.S., and says there is only about 50 worldwide.

On June 9, Jason will graduate from the Kingsley Montgomery School in Waterford. The school provides support for students with special needs. At 26-years-old students with severe impairments, like Jason, graduate.

“He’ll know when he has his cap and gown on that it’s a special day,” said Kelly. “There are nine or ten kids they will have a ceremony for.”

When he was a baby, Tim and Kelly Rabideau noticed their son was slightly behind in development, but they tried not to compare him to his twin sister, Katie, or their older sons, Jeremy and Joel. At 18-months-old, however, doctors measured the circumference of Jason’s head, which was smaller than normal, and found a cyst where brain cells should have been.

“That’s about when my world fell apart,” said Kelly.

When Jason was 2-years-old and had pneumonia, doctors discovered deformity in his bones, but it took many more years and doctor appointments before Jason was formally diagnosed at the age of 10 with Dyggve-Melchior-Clausen Syndrome (DMCS). According to the National Organization for Rare Disorders, DMCS is a “progressive genetic disorder characterized by abnormal skeletal development, microcephaly and mental retardation.”

“When he was younger, you wouldn’t have been able to tell,” said Kelly. “Now he has more trouble walking, arthritis, and joint pain. At 18 he had a spinal fusion, because he was at high risk of being paralyzed from the neck down. Mentally, he is about the age of a 3- or 4-year-old. He’s a good kid though, he make us laugh all the time.”

Jason has been attending Kingsley Montgomery for many years, but he spent his early years in Brandon Schools, as part of an inclusion program and it was there that he learned to talk.

“The language part was a blessing,” said Kelly. “His vocabulary is limited, but if he’s thirsty he tells me he wants milk. He can’t hold a conversation, but sometimes he surprises us and says a sentence.”

Janet Terryah has been a Brandon School District bus driver for 20 years. She drove Jason to school when he went to elementary here, and as the special needs bus driver for the past five years, she drives him and nine other Brandon residents to Kingsley Montgomery in Waterford, as well as one more to a school in Birmingham. The students range in age from 9-26.

“It’s a lot of fun, because they are very comical,” said Terryah. “We have a good time, it’s a long ride for everyone and joke around and have a lot of fun. The minute Jason sits down, he starts talking. He blurts things out like ‘Merry Christmas.’ He likes to tell things to Santa. He likes to sing and loves music. His last day will be a very sad day. We’re losing him and one other, and it’s really going to be hard.”

Kelly appreciates all the care Terryah and Bus Aide Julie Henley have given to Jason.

“They have huge giant hearts, and always have smiles on their faces,” Kelly said. “They get to know the kids, see their personalities. It means a lot to know that your child is with someone like that. I will miss them.”

Besides enjoying music, Jason also loves basketball and videos. His favorite movies are “Forrest Gump” and “The Lion King.” After graduation, Jason will move on to a day program.

I’m a little nervous, he’s going into the next journey of his life,” said Kelly. “I am his voice, I have to make sure he enjoys what he’s doing— he has a purpose, too. He’ll be out more in the community, to the park, maybe to the mall, maybe out to eat... I knew this day would come, I just want him to be happy, to feel he has a purpose in his life and to be safe and loved and have a full life.”