Unusual lives, unusual answers
Kari Ginther, 19, college student, Raymond, Wash., Friedreich's ataxia (FA)
Kari has experienced both homeschooling and homebound education. Her homebound experience was at the bottom of the scale, especially when compared to the two years she spent being homeschooled by her mother, Beth.
When Kari was in fourth grade, she began falling a lot and no one knew why. Embarrassed and confused, she asked Beth to homeschool her. Because Kari's brother also was being homeschooled at the time, Beth agreed and taught Kari at home for two years, during which time the FA diagnosis was made.
Kari's doctor strongly urged that she be enrolled in public school for social reasons. "They wanted her to have as wide a range of friends as possible before her condition started to really affect her," Beth says. "It was a good plan, but it really didn't work for Kari."
Kari attended public school for two years but quit during the eighth grade, as she was making the transition to a wheelchair. "Losing her ability to walk was too traumatic for her," Beth says. Because Beth didn't feel able to homeschool again, the school reluctantly — and somewhat haphazardly — provided homebound education for three years.
"Educationally, homeschooling was better," Beth says. During the homebound years, Kari rarely had any contact with her teachers. "The teachers would just say ‘read this and take this test.' An assignment that didn't make sense frequently was never explained and sometimes her grade would suffer."
Beth adds, "I basically taught her algebra, and the rest of the subjects she pretty much learned on her own."
Beth also fought battles over getting Kari appropriate physical and occupational therapy at home, and over the amount of testing the district wanted to give Kari — more than for regular students.
By the end of 10th grade, both the superintendent and Beth felt that, for social reasons, Kari needed to get back to the school building. Refusing to set wheel in the high school — where she would be the only student using a wheelchair — Kari instead took the entrance exam for the Running Start program at the local community college and was admitted.
More battles. The school district balked at providing a note taker and books, saying that was the college's responsibility. Beth spent a lot of time unscrambling who was responsible for what, taking the case all the way to the Washington State Civil Rights Office before the school district relented.
Did Kari suffer educationally because of her homebound program? Beth says yes and no.
On the one hand, the educational program wasn't very good. But Kari, a bright and motivated student, took charge of her own education, passing the college entrance test in 10th grade. And she seemed to benefit greatly from exerting control over her education at a time when she was losing physical independence.
"Homebound education was the perfect program for Kari," Beth concedes. "She walked longer because she was not forced into the wheelchair. I firmly believe she is healthier physically and emotionally because of that.
"Many people — experts — probably would disagree with the course we allowed her to take, but our kids live unusual lives. Sometimes we need to come up with unusual answers to the problems MD confronts us with."
Today, Kari is enrolled at Grays Harbor College in Aberdeen, Wash., and will graduate with an associate's degree in June, a year ahead of her classmates. She plans to go on to a four-year college and earn a degree in a computer-related field.
Butterflies in the corner
Jonathan Clements, 13, eighth grade, Missouri City, Texas, spinal muscular atrophy (SMA) type 1
|Jonathan Clements studies his eighth-grade curriculum at home, with teacher Rose Oltremari.|
Jonathan has been in a homebound program since kindergarten, and his experience rates at the high end of the scale.
"It's been wonderful!" enthuses his mother, Linda. "Anything they can do for him, they are willing to do." Often the district suggests equipment or software before she even becomes aware of the need.
Jonathan, who can no longer tolerate sitting up, gets the same work that's given in the regular classroom, right down to the chrysalis the teacher put in a corner of his bedroom so he could watch butterflies hatch. His teacher comes twice a week for two hours. Linda works full-time and Jonathan's home health aide helps him complete assignments.
The district also provides Jonathan with a computer, printer, fax, scanner and, most recently, a mouse activated by eyebrow movement. Computer programs offer enrichment activities such as art and music. Physical and occupational therapists come to the house weekly.
If you're considering a homebound education program for your child, here are some suggestions from those who've done it.
Kathy Clements (on working with the school district): A lot is your attitude going in. Keep positive, don't go in absolutely demanding.
Talk to other parents and research what your child needs, so that you know what you want and you can suggest it to them.
And while being taught at home can be a very good experience, if a child is able to go to school, it's a wonderful experience. The little bit that Jonathan was able to go, he really enjoyed it.
Beth Ginther: Every situation is different and what is right for one child may not be right for another. And you really won't know if you made the right decisions until much later.
I think each parent knows their child best and should make the decisions they know are right regardless of what the authorities or experts are telling them.
Our kids' situations are unique and many experts really don't have a clue.
Lorel Stolls, independent home study teacher, Lancaster, Calif., and former homebound teacher: Parents almost need to be as involved in homebound as they are in homeschool. They are a very big factor. Once a teacher leaves, the parent has to say, "OK, finish your work."
The parent also has to call the shots as to whether the child is strong enough to do the work assigned. If the parents are cooperative, a good homebound teacher can keep a student up with the class.