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Homeschool Information Library
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Homeschooling The Chronically Ill or Disabled "Student"
This article, by Leese Griffith, was originally published in the July-August 1995 issue
of Home Education Magazine.
Tanya* appears to be the picture of health as she romps with a visitor's child in the backyard. She's small, perhaps, and her coloring is fair, but her violet blue eyes dance with mischief and energy. This is a good day for Tanya, and her mother watches from the kitchen window, nervously.
"It's good to see her running and playing," Karen* says, "but I'm always afraid she's going to over do it."
Tanya has asthma. She's been in and out of hospitals during much of her seven years. Karen and Tom* enrolled her at the neighborhood elementary school two years ago, but recurrent problems with the asthma caused her to miss more than four weeks of school during her kindergarten year. The school told Karen that they'd have to hold Tanya back, since she hadn't fulfilled the minimum attendance requirement. Frustrated and upset, Karen and Tom brought Tanya home.
Stuart's* parents have struggled with a multitude of issues since he was diagnosed with a rare form of lymphoma eighteen months ago. Their world has grown very, very small. Daily life now consists of medications, blood tests, hospital visits and sifting through an insurmountable stack of bills. If not for homeschooling, Stuart would lack the opportunity to keep up with the academic progress of his peers.
"Our schedule is so overwhelmed with his medical care," Mary* says, "that we've integrated it into his homeschooling - if you could call it homeschooling."
Stuart helps his mother assemble his daily medications. He's set the timer on a special watch to remind himself when another dose is due. Additionally, he's researched lymphoma and the popular chemotherapy used in treating various types. He has studied nutrition and holistic methodology. He seems much older than his thirteen years might suggest.
Candi is the homeschooling mother of four. Her youngest children, Maya and Maeve (twins), now three, were born three months early. Being premature, they've required a lot of special care, and are still behind in their development. Maeve has neurological problems and Maya is legally blind. Candi's older children, Ty and Salem, have had to adapt to the extra work the twins have created for the entire family.
At nine, Ty helps with his own curricular preparation. He lists topics he'd like to study, and scours book lists and catalogs for materials. Salem isn't as cooperative. She's a little jealous of her sisters and all of the attention they get.
In an effort to give her "middle child" more devotion, Candi rejected the self-study program that has worked for Ty, knowing Salem's needs are unique to her. Instead, Candi practices "unschooling" principles with her, and encourages Salem to act as a "teacher" for the younger girls.
Each of these families struggle with something unfamiliar to most homeschoolers ~ the chronically ill or disabled child. How do they do it? In the cases of Karen and Mary, there are few other options. Even in a private school, Tanya would be required to attend for a minimum number of days. And Stuart is often too weak and too sick to accomplish traditional school work.
Candi began homeschooling before the twins were born. For her family, homeschooling is a way of life.
"I can't imagine sending Ty and Salem off on a bus for the entire day," she says. "The twins would be lost without them. In fact, the girls have fared much better than doctors predicted, and I think it's because they have their brother and sister with them all of the time."
Homeschooling is an ideal situation for the family grappling with difficult issues and medical problems. Contrary to what most of us assume, it's no more difficult to "teach" an ill child if flexibility rules the home.
"There are days when Tanya simply is too tired to practice writing or play with the math manipulatives," Karen says, "but on those days we cuddle up with some good books, or pop in a video of a favorite story. We pretty much do year round school at our house."
Mary says, "I don't pressure Stuart. He lets me know what he does or doesn't feel up to. If he wants to help plan dinner, for example, I let him. But, many days he's too nauseous to even think about food. He might hole up in his room and listen to classical music or play computer games."
I wondered if any of the mothers worried that their children weren't learning enough.
"Are you kidding?" Mary laughed, "Stuart knows more about prescription medications than I do!"
Karen agreed, "Tanya seems to be a little more tuned in to learning than the average child her age. For her, it's a fun diversion from feeling tired or ill."
"I really don't have time to worry about what the older two are learning ... or even if they're learning at all," Candi said. "The twins require so much of me, that we just have a routine and try to be flexible. If Salem is getting out of control, I give her something to do. Something fun. And Ty pretty much just does whatever."
While one might raise an eyebrow to that response, Ty and Salem are bright and articulate children. Ty is especially sensitive and considerate, and Salem is very creative. More striking is the gentleness and patience they exhibit towards the twins. For all of her overt jealousy, Salem is a "mother hen" to her younger siblings, keeping Maya out of harm's way and helping Maeve with educational toddler toys.
Clearly, homeschooling is not only a viable option for these families ~ it's a strength. You and I might have the tendency to feel sorry for these parents, but each one stated that their medical crisis has tightened bonds in their families that homeschooling alone wouldn't have.
"We homeschooled before the twins," Candi repeated, "but it's different now. I'm not 'mom, the teacher'. I'm just 'mom'."
"Don't get me wrong," Mary said, "I hate that my son is so ill. But we've grown so close through all of this. He was in school before, and seemed to be drifting away. He was either at school, with his friends or in front of the TV. Now we do everything together. I just wish it could have happened with him being healthy."
 If your child is ill or disabled ...
The fear of every parent is illness or harm coming to their child. But if your child is ill or has a disability you can still hold to your convictions regarding homeschooling. In fact, your family can benefit from keeping your child close to hearth and home.
Talk to your child's doctor about education. In Karen's case, Tanya had been missing a lot of school. Her doctor might have suggested tutoring (a common suggestion, by the way) to supplement Tanya's public school education. This is not only expensive, but adequate tutors are difficult to come by.
If your child is seriously ill, most doctors recommend a break from education. The theory is that the child's complete energy can be focused on recovery. Yet, total focus on such a somber topic can prove to have negative effects. The child can become depressed and lethargic, and recovery can actually be impeded. Distraction, in small, measured doses, is often more beneficial for the child (and the parent!).
Finding a support system ...
Support is available for the homeschooling parent of a seriously ill child. America Online has a forum called, "Differently Abled Homeschoolers". If you have a computer and modem, I recommend paying for America Online service for this feature alone. Go to "keyword" and type "homeschool". Then, click on "Looking to link - Homeschools", and scroll down to the "Differently Abled Homeschoolers" folder.
Think about starting a local Homeschooling Support Group for parents with ill or disabled children. Advertise at your nearby library, YMCA or community center. Post a notice in your church bulletin, asking members to tell others about the program. If you have a small, neighborhood newspaper, place an ad in the classifieds. Ask your doctor to pass the information on to other patients and parents.
Finally, give yourself a break. You have enough to deal with. You don't need to add guilt or pressure to your plate. Don't hold yourself or your child to a rigid school schedule. Don't fret that she's not learning enough. She is. And more importantly, she's learning that you're there - always available whenever she needs you.
*names have been changed on request
© 1995 Leese Griffith
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