Before deciding on a homeschooled or homebound program for your child, educate yourself
For many parents of children with neuromuscular diseases, a question arises at some point: Should I continue to send my child to school?
Maybe the child is having frequent illnesses, increased pain or behavior problems. Maybe the school isn't meeting the child's needs. Or perhaps the child is getting too weak to handle a school day.
The decision to educate at home can be a tough one. Parents wonder: Who will teach my child — and what will be taught? How will my child obtain special services and equipment? Will pulling my child from school result in social isolation?
The answer to all those questions is: It depends. Each family can discover its own right answer by learning about the pros and cons of each option and considering its own values, abilities and interests.
A better choice?
Home education has many advantages for children with neuromuscular diseases. Being at home allows them to bypass germ-filled classes, inaccessible campuses, uncomfortable desks, fatigue from long school days, difficulty keeping up in class or physical education, teasing by peers and teacher misunderstanding of their specialized needs.
When children become too weak to attend school, home education keeps their minds active and their spirits connected to the larger world.
Some parents say their homeschooled children have fewer infections, decreased aches and pains, and less fatigue. Some children who were getting discouraged or burned out at school seem to have a better attitude toward learning. And some parents appreciate the opportunity to spend as much time as possible with the child.
But home education also has a downside. Many kids enjoy the daily give-and-take of school culture and would miss seeing their friends. Educational quality can vary at home (as it can at school, for that matter), and it can be harder to get special education services from the local school system.
Schooling at home comes in two forms: homebound education and homeschooling.
A homebound program basically is a home version of the classroom. Mandated by federal and state laws for students who are medically or psychologically unable to attend school for long periods of time, homebound programs attempt to provide students with the same classes and materials their peers are getting at school.
Usually, a doctor's note stating the child is unable to attend school is required for admission to a homebound program. The American Academy of Pediatrics warns doctors not to pass out these notes lightly, saying that school is the best place for a child's education. A doctor may agree to a homebound program for a child with a neuromuscular disease who is having severe respiratory problems, is at high risk of infection, or is physically exhausted by the demands of the school day.
Once a homebound program is approved, the district sends an instructor to act as a liaison between the classroom teachers and the child. In some cases, the child also may be "wired" to listen in on some classes via computer or telephone. In some Florida programs, for example, homebound students attend weekly classes together by conference call.
If the child has an IEP (Individual Education Plan, which spells out accommodations and goals for a student with special needs), it will be followed in the homebound program. Likewise, homebound students are eligible to receive adaptive equipment (such as computers and software) and physical and occupational therapy at home from the school district. Parents report varying levels of compliance with this requirement.
A "responsible adult" (parent, friend, home health aide) must be present during instruction time, which can vary from one to 10 hours a week depending on the district, grade level and child's physical tolerance. Typically, the homebound instructor leaves assignments for the child to complete and turn in. Workload is adjusted to the child's abilities.
Just as school districts vary widely in their effectiveness, so, too, do homebound programs. Parents report experiences from fabulous, to OK, to outright bad. A period of adjustment is required to fine-tune the program to the child's needs. And parental monitoring, negotiation and persistence are musts.
The difference between a homebound program and a homeschool program is like the difference between a photocopy and a freehand drawing.
While homebound programs attempt to mimic the standard school curriculum, homeschooling aims to implement a curriculum that best fits the interests, values and learning style of the individual student. In some cases that can mean no curriculum at all, but simply encouraging children to study whatever interests them.
In homeschooling, the parent is the primary teacher and may or may not have contact with the district. Depending on the curriculum they choose and their lifestyle, parents teach when and what the child is ready to learn, while enjoying the profound satisfaction — and occasionally profound frustration — of spending long periods of time together learning.
Homeschooling has blossomed during the past decade. Once seen as the territory of fundamentalist Christians or far-left hippies, the movement has become more mainstream. It's now legal in all states, although requirements vary widely from none to highly restrictive.
Between 850,000 and 1.3 million U.S. children ages 6 to 18 are homeschooled, and there's an impressive amount of educational material and support available for any and all educational philosophies.
How effective is this type of learning? In general, homeschoolers tend to score at the top on standardized tests, display little gender gap in test scores (girls and boys do equally well), watch less television, have more time to pursue their own interests and gain admission to selective colleges in record numbers.
Homeschool can be an effective alternative for children with attention deficit disorder (ADD), which can occur in conjunction with some neuromuscular diseases. Some child development experts believe students with ADD do better with the one-on-one instruction and controlled learning environment of a homeschool. (They stress the importance of finding an appropriate curriculum and teaching style.)
Homeschool's benefits come at a price, however. Success requires a boatload of parental commitment, organization, creativity, patience and time. It's almost impossible for a parent to work full-time and teach a homeschool program; even part-time work can be difficult.
Even homeschool's most passionate supporters agree that it's not for everyone.
Will you get services?
In many states, homeschooling families are responsible for finding and paying for special services such as physical therapy or adaptive computer equipment.
Federal law requires that school districts provide these services to students in public and private school programs. There have been contradictory court rulings as to whether districts must provide special education services to homeschoolers. For example, in 2001, different courts granted speech and language services to a homeschooler in New Jersey and denied similar benefits to a homeschooler in Nevada.
If your state classifies homeschools as private schools, then it's likely that you can receive at least federal funds for services and equipment. But if your state doesn't group homeschools with private schools, then you may be out of luck — or in for a court battle.
Families who want to challenge the system can turn to the Homeschool Legal Defense Association (HSLDA, http://www.hslda.org/), a Christian-based membership organization devoted to helping homeschooling families. HSLDA estimates that about 10 percent of homeschoolers have special needs, and has waged a number of battles on their behalf. Another source of advice and support is the Christian-based National Challenged Homeschoolers Association Network, or NATHHAN (http://www.nathhan.com/).
Homeschoolers also may be denied access to school clubs and activities, even though their parents pay taxes that support these endeavors. Again, it depends on the district. While an Illinois homeschool student with Duchenne muscular dystrophy was allowed to use the school's heated therapy pool after hours, an Alabama homeschooler with Friedreich's ataxia was refused admission to an academic club called Scholars Bowl. Many homeschool parents — fed up with the school district in general — never ask about access to clubs or special ed services, but simply go out and find their own.
The socialization question
Bring up the subject of homeschooling to a non-homeschooler and chances are you'll hear something like this: "I don't believe in homeschooling. Kids need socialization."
What is socialization, exactly? In child development, it refers to helping children learn to live, play and work with others. Critics fear that home-educated children won't learn the give-and-take and cooperation skills necessary to get along with others.
This fear is magnified when children have profound physical disabilities, or are naturally shy or withdrawn. But there's no hard evidence to suggest that thrusting children into a public school environment somehow teaches these skills.
As with many other important lessons for children, a lot depends on what the parents do.
"We may homeschool, but we're not hermits," declares Debbie Bonds of Horton, Ala., who homeschools her sons Ethan, 11, and Javan, 14, who has Friedreich's ataxia.
"Javan and Ethan are normal children who participate in many extracurricular activities, like choir, 4-H and YMCA," she adds.
Besides being president of his local 4-H group, Javan, with his family, worked with two fire departments for MDA last year, and volunteered all day at an MDA Lock-Up.
Clubs, sports, Scouts, volunteer work, music lessons and church groups are common avenues by which home-educated children stay connected with others. Homeschool networks are another route, providing opportunities for group learning and field trips.
And don't discount the profound socialization opportunities offered by siblings.
"With six kids, I wouldn't mind a little isolation," laughs Kathy Fallon of Baltimore, who has homeschooled them all, including Lance, 15, and Hannah, 4, who both have SMA type 2. Besides activities outside the home, "there's neighborhood kids. My kids aren't locked in the house all day long."
Lance was MDA National Goodwill Ambassador in 1993, traveling extensively and appearing four times on the national MDA Telethon. Not only was this excellent socialization, but the flexible homeschool lifestyle made it easier to do, Kathy says.
In addition, having her children learn together has resulted in a close-knit family whose members are "really good friends with each other."
Lack of socialization may be a bigger problem for children in homebound programs, who tend to be more medically fragile and physically limited.
For example, Jonathan Clements of Houston, former Texas MDA Goodwill Ambassador, "is very much of a people person," says his mom, Linda.
Although Jonathan has never attended school full time, he used to have peers who would come over or e-mail, "but not so much now," Linda says.
Instead, Jonathan (who can only move one thumb) has an adult friend who regularly takes him out for fun.
On the other hand, Corey Clayton, 17, of Des Moines, Iowa, isn't a "people person."
Corey elected to be in a homebound program this school year after missing three weeks of school due to a respiratory infection related to his Duchenne MD. His mother, Kathy, says he's never really cared much about socializing.
"He is shy and extremely introverted," she says. "He has a friend he met in middle school who does visit him occasionally, but that's about it for company."
Corey says he likes learning at home and Kathy says, "I don't force him to do anything he doesn't want to do."
Socialization doesn't have to come only from peers. Learning to get along with adults can be just as valuable.
Kari Ginther's Washington state school district was nervous about allowing her to attend a homebound program, believing it wasn't meeting her social development needs.
"But the few people who stopped by to see Kari found a cheerful young woman, very well adjusted and able to relate to people," says her mother, Beth. "These people stood up for her, giving the school the courage to let her stay in the program."