Learning at Home

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.

Homebound Education

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.

Homebound Programs: Two Stories

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." Jonathan Clements studies his eighth-grade curriculum at home, with teacher Rose Oltremari. 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 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.

Homeschool

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.

Homeschooling: Two Stories

A STRESS RELIEVER Spencer Robedeaux, 12, seventh grade, Lancaster, Calif., Charcot-Marie-Tooth disease (CMT) Jenny Robedeaux wasn't sure she wanted to educate her son Spencer at home, but he insisted. Both mother and son have CMT, and Spencer also has diagnoses of attention deficit disorder (ADD), migraine headaches and depression. School was a struggle for Spencer. He experienced daily migraines, numerous office referrals for not paying attention, and increasing aches and pains from carrying a heavy backpack (the school has no lockers). In cold weather, his hands were stiff and achy. He worried about being teased, especially about his leg braces. "Spencer really wanted to be in a homeschool program," Jenny says. "I was — and am still at times — very unsure of my capability to be a teacher. Plus, there are good things about school, things I didn't want him to miss out on." Spencer Robedeaux has had fewer health problems since his mom, Jenny, began homeschooling him. Luckily, the Robedeauxes' school district offered the perfect compromise: a home education independent study program. For students who qualify, the program provides textbooks, workbooks, curriculum guides and help in setting up a homeschool program. Parents and students meet regularly with a district teacher to turn in workbooks, attend workshops, go on field trips or take tests. IEP goals are honored, and any required special computer equipment is available, although not always in the home. Several months into the program, Jenny and Spencer are pleased with the results. "It's a lot of work and takes a lot of time, but wow, what a stress reliever!" Jenny says. "I used to worry about him all day long.

Now he is feeling so much better. He is off his Ritalin [for ADD]. His headaches are down to one a week. His attitude is better. He is warm in the cold weather. Public school can be so hard on kids with CMT and ADD. "I don't love homeschool, but it is nice that he is feeling better and I like being able to help him at home." SPENDING TIME TOGETHER Tim Carol, 11, fifth grade, Woodstock, Ill., Duchenne muscular dystrophy (DMD) Unlike Jenny Robedeaux, Cheri Carol always felt a "leading" to homeschooling. Starting with her older daughter, who was hanging out with the wrong crowd at school, Cheri soon was teaching three of her four children (the fourth preferred the vocational education program in the public school). Among her reasons for teaching Tim at home: "I just felt like I wanted to spend as much time with him as I could." Cheri attended but didn't graduate from college and has no formal teaching experience. None of that is required to homeschool in Illinois. Armed with prayer and the help of a local homeschool network, she's teaching a Christian curriculum that covers the educational basics and appeals to Tim's scientific and engineering interests. Anything can spark an extracurricular lesson. For example, a recent trip to Canada over the 5-mile-long Mackinac Bridge (a suspension bridge) led to building and testing the strengths of different bridge structures. Although the school district has been willing to provide physical therapy and the use of a heated therapy pool, the Carols prefer to work with their own specialists. For Tim, the best parts of homeschool are not having to get up so early and being able to work at his own pace and in his own space — at the table, the counter or stretched out on the floor. He sticks with a topic until he has mastered it, then moves on. Homeschool also has meant less fear of getting bumped and falling, fewer colds and infections, and a faster recovery time when he gets sick, his mom says. "Watching him grow and progress in his education is the best," Cheri says. "But mostly I just like the being together, and not leaving it all up to someone else."

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 Home-schoolers Association Network, or NATHHAN (http://www.nathhan.com/).

Homebound Program Advice 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.

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 Good-will 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."

Is Homeschooling Right for You? Terrie Lynn Bittner, a homeschooling mom who maintains a Web site called the Homeschool Teacher's Lounge (www.geocities.com/athens/oracle/4336/), suggests asking yourself these questions: Do I have time to educate my child? To be successful, both parents need to see this as a full-time job for the teaching parent. Do I have the financial ability to homeschool? Books, materials, curricula and organization dues all add up. But while homeschool is more expensive than public school, it usually is less expensive than private school. Do I have a good relationship with my child? Homeschooling means you'll be spending a lot of time with your child, with few breaks. And all kids (and adults) have days when they don't want to work. Do I like to teach? Do I know how to find the answer if I don't know it? Can I compensate for what my child is missing at school? Does my child want to be homeschooled? Am I organized and self-controlled? If it doesn't work out, will my child be academically prepared to re-enter school? Some parents who have taken the plunge offer this advice: Becky Maxwell, mother of Anthony "Boomer" Maxwell, 11, CMT type 2 and spina bifida, Eagle Rock, Miss.: I decided to try homeschool last year after Boomer missed 44 days of school and the school refused to pass him to the sixth grade, even though he could do the work. He was getting discouraged, and my goal was for him to learn without the pressure of a time limit, so he could enjoy the learning experience. My advice to other parents is to go for it! Find a style that suits your schedule and do it. If one thing isn't working, try another way. Find information online or at libraries and look for local homeschool support groups. Once you start you will find you are not alone. And don't worry that you are not teaching material. You don't have to have a master's degree to homeschool. Just review a subject before teaching it. It can be fun! Debbie Bonds: It's very intimidating at times to realize you have the responsibility to make sure they get an education. But then, if they were in public school, I would still be responsible, to be sure the kids are there and encouraged to learn. I would say the pros and cons [of homeschooling] even the scales, but it's not for everyone. Kathy Fallon: You have to look at it like a job. You have to prepare, discipline yourself and make a commitment to stick with it, or else it's not going to work. If you had a job, you wouldn't wake up one morning and say, "I'm just going to lie around and watch TV today" or go into work unprepared. It's the same thing. Jenny Robedeaux: To me, homeschool is as much work as public school. I used to have meeting after meeting about Spencer's IEP, the teachers were calling, the nurse was calling, the principal was calling. My advice if you want to homeschool is to find a program that you are comfortable with and try it. If you hate it, you can always quit. But it's nice to know you tried everything you could to help your child. I hope I never have to send Spencer back to public school.