Monday, November 26, 2001
Mother embraces disabled kids
By Karen Samples
The Cincinnati Enquirer
For the benefit of new people, these Northern Kentucky moms begin each meeting by telling about their children.
Jacob has autism, somebody might say, or Ashley has cerebral palsy or Robbie has seizures.
One member of the Mothers of Special Children support group takes a little more time than the others. Her name is Colleen Bracke, and both of her sons have disabilities.
Ryan, 14, has Down syndrome. Sam, 12, has spina bifida and hydrocephalus, which requires a shunt to drain water from his brain. Sam also is missing part of his middle brain and has a mild form of autism.
Mrs. Bracke doesn't know the odds of having two children with different congenital defects, although a doctor once called her situation one in a million. She participated in a study that showed her body doesn't absorb folic acid the way it should, which may be part of the explanation.
What she knows for certain is this: Self-pity won't help her kids.
And if she lost out on the Gerber babies every mother dreams of having, she cheers just as hard for the ones she got.
We expect a lot out of them, behavior-wise, because they've got to grow up and be in society, says Mrs. Bracke, a full-time reading tutor for Kenton County schools.
The family lives in Morningview, Ky., a rural community in southern Kenton County. Mrs. Bracke's husband, Tony, is an assistant commonwealth's attorney in Campbell County.
I really could not do it without him, she says. There are days when he comes home from work and looks at me and says, "I think you need to get out for a while.'
Ryan is a bubbly, curious teen-ager who has always attended school alongside non-disabled youngsters.
He reads well, and on his 13th birthday he had his first party with school friends instead of just relatives. To the Brackes' delight, about 20 classmates not only showed up but never left Ryan's side.
Ryan just being Ryan is a great accomplishment, his mother says. He's such a good kid.
Sam is a bigger handful. He uses a wheelchair, requires catheterization six times a day and has endured 14 major surgeries. He also tends to throw tantrums when he doesn't get his way.
But the Brackes, who fre quently go out as a family, expect better. They attended counseling to learn how to manage Sam's behavior, which has improved.
What I don't want is someone to say, "Oh, that's OK, the little retarded boy doesn't know any better,' Mrs. Bracke says. Well, you know what? Yes, he does.
Sam, too, has his shining moments.
At White's Tower Elementary School, he appeared in a video promoting the inclusion of disabled children in regular classrooms. This year, he started sixth grade at Twenhofel Middle School, where he has learned to switch classes on his own.
He's really amazed us since the beginning of school with just what he can do, Mrs. Bracke says.
On a recent afternoon, the boys offered to take a reporter's coat, then watched videos while their mother gave an interview. When Ryan decided to play basketball, he got Sam's wheelchair so Sam could come, too.
Mrs. Bracke was 23 when Ryan was born. She had no reason to suspect Down syndrome, a chromosomal abnormality that causes mental delays, because it is more common in children of older women.
For a few days, she and her husband went through that nice little time of denial, as she calls it. Then reality set in.
When Sam was conceived two years later, Mrs. Bracke naturally worried about his health. But her alpha fetal protein levels were in the normal range, rather than high (which can indicate spina bifida), or low (which can indicate Down syndrome). Her ultrasounds also were normal.
She felt the baby kick, so she never suspected anything like spina bifida, which often causes partial paralysis due to incomplete closure of the spinal column.
Sam was born at 4:30 a.m. Woozy from drugs, Mrs. Bracke heard a doctor say, This baby has a lesion, but thought her fears must have invaded her dreams. Then the flurry of activity told her it was real.
She knew about spina bifida through a mom in the support group whose child had it.
When you're pregnant, you think you're going to have the Gerber baby ... and you have dreams for that Gerber baby, Mrs. Bracke says.
Besides being the prettiest and smartest children in the world, "they're going to buy you that condo in Florida and support you in your old age, she says. And then, all of a sudden, that Gerber baby is gone.
We go through the same grieving cycle as when someone has died, because our dreams have died.
Gradually, though, new dreams emerge.
Mrs. Bracke became involved in education issues, pushing for the inclusion of disabled children in regular classes. She has written several short essays about her own sons' experiences in school.
She also answers the phone line for Mothers of Special Children.
She just connects so well, because of her own experience, with these young mothers who come in, says Evelyn Tolliver of Erlanger, a group member and long-time friend.
The Brackes' attitude is admired by many others, including White's Tower's school nurse, Bev Ball.
They expect their boys to behave, they expect their boys to be good citizens, they expect their boys to learn, and yet they realize their limitations, Ms. Ball says.
Sam is in physical therapy to help him get stronger. Someday he will have a job and a measure of financial independence, his mother hopes.
Ryan loves to cook and help run the copy machine in his dad's office. He may never drive a car, but he certainly will take the bus wherever he wants to go.
I know Ryan's going to do fine, his mother says.
Yeah, says Ryan.
Mothers of Special Children of Northern Kentucky meets at 7 p.m. on the second Thursday of every month at Erlanger United Methodist Church. For more information, call (859) 356-8499.
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