Your son with DMD will be happiest if he leads as "normal" and complete a life as possible. For children, school is a central component of life. Not only does school educate the mind, it's also crucial for a child's emotional development. At school, he can learn social skills and appropriate behavior, make friends, discover talents and ways to excel, develop self-confidence, set goals and have fun. School is a great place to help children with disabilities feel like "regular kids."
The days when children with disabilities could legally be prevented from attending public schools are long past. A series of federal laws has guaranteed children with disabilities an education in the public school system.
The Americans with Disabilities Act (ADA) also makes it illegal for a child care center or preschool to turn down a child simply on the basis of disability. (See "Baby-Sitting and Child Care.") The facility must make an effort to accommodate the child, if it can do so at a reasonable cost.
THE INDIVIDUALIZED EDUCATION PLAN (IEP)
Most educators advocate mainstreaming of children with disabilities beginning in the preschool years. Mainstreaming, now more often called inclusion, means that disabled children are placed with nondisabled students as much as possible, rather than being segregated in special classes. Inclusion helps most children adjust socially and learn to their full capacities.
Inclusion is the philosophy behind the Individuals with Disabilities Education Act. The IDEA guarantees your child a "free appropriate public education" in the "least restrictive environment." It's not only against the law for a school official to tell you "your son can't go to school here because he's handicapped." Public schools must provide an educational program suited to your son's specific needs, in a setting as inclusive as possible.
The IDEA also mandates that each child with a disability have an Individualized Education Program (or Plan) and that the parents be involved in developing the plan. By law, the district must call a meeting between you and school personnel to review your child's IEP at least once a year; but a parent, teacher or administrator can call an IEP meeting at any time.
The group that draws up the IEP -- called an IEP team or an ARD (Admission, Review and Dismissal) Committee -- generally includes a school administrator, the child's special education teacher (if he has one), his regular classroom teacher, personnel who've assessed your child's abilities, and one or both parents. You may invite anyone else you wish to the IEP meeting -- for instance, your child's physical or occupational therapist, the child's doctor and even friends. By junior high, if not sooner, you'll also want your son to attend and have input. The law says children must be invited at age 16 and older.
At the IEP meeting, the team members work out your son's educational goals and objectives for the upcoming school year. They then write an IEP that spells out exactly how those goals will be addressed. The plan should include details about supports -- whatever is necessary to enable the child to meet his IEP goals. Supports may include adult personal aides, a scheduled time for rest or physical therapy, adaptive computers, building modifications and other needs. Failure to provide supports listed in the IEP violates the law.
Classroom modifications to be spelled out in your IEP could include: a peer volunteer to take notes, extra time and an aide for test-taking, or modifications in the amount of homework required. Social and psychological goals can be addressed by assigning your son a buddy during recess or lunchtime, providing adapted ways for him to take part in physical education or having another student help get his books out at the beginning of class. In junior high or high school, the IEP can require the student to explain his needs to teachers and ask for assistance. This is good practice in self-advocacy and independence.
The district, teachers and family must agree on the final plan. Some compromise is usually necessary, especially for supports that will be expensive. However, if you feel strongly that something is essential for your child's education, you can insist the district provide it.
Once the plan is put in writing and signed by you and the school, the district is legally obligated to provide whatever the IEP calls for -- at no additional cost to you. The IEP is a powerful tool that allows you to see that your child gets the education he needs. The IEP process also allows you to take full advantage of the expertise and resources available in the school system.
To prepare yourself for an IEP meeting, first check with your school's or districts special education director or pupil service director for information. Most districts will give you a written set of guidelines and rules, including what to do if the committee can't reach consensus. Every state also has a Parent Training and Information Center that advises parents of students with disabilities. These are federally required and funded, and go by various names -- Special Education Action Committee, Parent Network, Parent Advocacy Center, etc. You should be able to get the phone number through your state education department, from your local MDA office or from the National Parent Network on Disabilities.
Before your IEP meeting, examine the physical layout of your child's school to see what changes are needed to provide accessibility to all classrooms, bathrooms, etc. Have some specific academic and social goals in mind for the coming school year. If your child has a learning disability, the IEP should include learning goals as well as physical adaptations.
Though full inclusion has many advantages, it isn't necessarily the best way for every child to be educated. A child with extreme fatigue, a tracheostomy or a gastric feeding tube may be too "medically fragile" to withstand a full school day. If, after consulting with your physician, you decide that part-time or full-time home schooling would be best, your team will draw up an IEP with academic expectations, tutoring requirements and other details, all of which must be provided by the district.
At some point in your son's school career, you may choose a special education program. Sometimes these programs can help a child come to terms with his disability and express his feelings about it. Special education can also help the child address learning disabilities sometimes associated with Duchenne. Often, part of the school day is spent in a special education setting, and the rest in inclusion with other students.
Parents are entitled to monitor how well the school district is carrying out the IEP. If you're not satisfied that the school is complying with the plan, try to work things out directly with the teacher. If that doesn't work, you're entitled to call an IEP team meeting at any time to review goals and progress. All districts have a due process procedure to follow when members of an IEP team can't agree on program details. The steps generally first ask a district official to mediate. In a few cases, parents have brought lawsuits to force districts to provide their children with their educational rights.
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