Home-Schooling: An Alternative for Children with Epilepsy

By Sylvia Blair
Epilepsy USA staff
Posted: September 5, 2003

Imagine if a child with frequent seizures doesn’t have to worry about getting to school in time when mornings are the worst part of the day.

Imagine if that child doesn’t have to cringe in fear of being bullied and teased by mean classmates.

Imagine if mediocre grades go up sharply, thanks to one-on-one attention.

For many home-schooled children with epilepsy, this is not a dream.

It’s the daily reality they enjoy when they get up in the morning, ready for another school day at the kitchen table with mom or dad.

What is Home-Schooling?

Basically, home-schooling is educating a child outside the setting of a formal school. It is legal in all states. Each state has its own laws about attendance and governing how it is done.

There are different ways to home-school. Some families use textbook, tests and grades, while other families support and encourage a child’s natural learning in areas of interest to the child.

According to the National Home Education Network (NHEN), there are about 1.5 to 2 million home-schoolers in the United States, representing 3 to 4 percent of the school-age population.

Among families of children with disabilities, home-schooling is becoming a more popular option.

Helene F. Craner, C.S.W. of Resources for Children with Special Needs in N.Y., has noticed “more interest in the last two years in terms of the numbers of inquiries we get from families of children with special needs who feel the school system is not responsive.

“We see an increase in calls in this area across the spectrum of disabilities,” Craner said. “We support families by sending them information and materials about home-schooling.”

Home-schooling the Child with Epilepsy

Twelve-year-old Sam Miller of Dayville, Conn., used to go to private school. But his teacher didn’t understand his epilepsy, says his mother Ginny, and his meds and seizures caused learning problems.

So in fourth grade, when the family moved to a new area, Sam made a new start. He began home-schooling.

“The advantages for Sam far outweigh the disadvantages,” Ginny said. “We can make accommodations to the school day if he has had a seizure. We make up the work later in the day, that evening or the next day. In a traditional school, he may need to miss an entire day due to a seizure, but with our adjusted day, he can do the work at night or on a weekend if necessary.”

“During our first year of home-schooling, he changed medication four times with dozens of dosage changes,” Ginny said. “Each new med came with its own set of problems, like the need for extra sleep, and behavioral changes. We were able to pin down the cognitive side effects, since I knew fully what he was capable of doing.”

Sixteen-year-old Aretha Jerrel of Stockton, Calif., has always suffered from mixed seizure types that do not respond to medication. Her mother Marilyn home-schooled Aretha from third to sixth grade, then sent her to traditional school after that so she would not be so isolated. Aretha’s public school placed her in special education, but Marilyn felt her daughter was not being mainstreamed well enough.

“The teacher’s expectations were low and everything was an uphill battle, even getting her in a regular music class,” Marilyn said.

So in December 2001, Marilyn took Aretha out of public school and currently home-schools her again.

“Now my daughter is able to move through her day as she is able to, given all her seizures,” Marilyn said. “During periods of the day when she’s clear, she can work on her computer. I take every window of opportunity, regardless if it’s 7 p.m., to work with her.

“I believe Aretha has better self-esteem now. We still are challenged by the lack of socialization, but in her case, as a public school special ed student, the quality of socialization was not that good,” Marilyn said.

The Drawback of Less Socialization

Although academically, home-schooled children fare the same or better than their peers in traditional schools, it can be difficult to make sure they are getting enough time with friends.

“When a child doesn’t have the opportunity to be in the classroom with other children, it affects socialization,” Craner said. “Finding appropriate social interactions for children with disabilities can be a challenge.”

According to NHEN, there are support groups available in many communities that are a good resource for finding friends

“We joined youth groups at church and remained active in Sunday school,” Ginny said, who also enrolled Sam in swim lessons, biology lab classes, gymnastics and summer enrichment classes.

Nine-year-old Steven Sturdevant of Manteca, Calif., is home-schooled by his mother Amy. He is an only child.

They are part of a charter school, which oversees the work of area home-schooling parents. Amy has monthly meetings with the charter school to review her son’s work , and this way, she keeps up her personal network. They frequent the local park where they have met other home-schooling families, and go on field trips to get out of the house some.

Are Parents Really Qualified to Teach Their Children?

According to NHEN, children benefit from the individualized, personal attention from someone who has a vested interested in their success — their parents.

If a parent is not qualified to teach a particular subject, advises NHEN, they have many options: hire a tutor, barter for instruction, get together with other families to create a class, or find an online class.

However, families say home-schooling is not an answer for all children with epilepsy.

“It is tough work ensuring that children are where they need to be educationally,” Ginny said. “Not all parents are natural teachers or have the confidence to be strict in achieving academic goals.”

Amy agrees, adding, “One of my biggest challenges was organization and deadlines."

Working with the School Through the Problems

Although it’s understandable why parents who find their schools unresponsive to the special needs of epilepsy would choose the home-schooling route, some parents find it’s possible to work with the school to make the learning experience better for their child. And keep the child in school.

Twelve-year-old Jessica Bowen of Lynnwood, Wash., has absence seizures and convulsions. At first, Jessica distanced herself from her friends because she was embarrassed and didn’t want people to think she was different. Back in the fifth grade, she really suffered with tiredness, poor concentration and slipping grades. She became more withdrawn.

Her parents knew they had to do something.

Halfway through sixth grade, Jessica’s parents asked her if they could come into her classroom and teach the students and teacher about epilepsy. After much thought, she decided to let them do it. To their surprise, Jessica joined her parents in front of the class to share her story.

“During question and answer time, the response from the students was overwhelming,” said Debbie Bowen, Jessica’s mother. “Even Jessica’s teacher said it was a powerful experience.”

Since then, Jessica has pursued many extra-curricular activities and is in a teen support group. Fortunately for Jessica, her story has a happy ending.

But for families who aren’t so lucky, home-schooling is an option worth considering, for a successful education in a positive, nurturing manner. Homes-schoolers have even been accepted into excellent colleges across the country, according to NHEN.