Miranda Jackson’s first signs of muscle weakness came in first grade. A bright youngster with an engaging smile, she struggled not only with lack of coordination from myotonic muscular dystrophy (MMD), but also with pain from a form of juvenile arthritis and depression from bipolar disorder.
Although articulate in classroom discussions, Miranda frequently withdrew to the resource room during recess. She had trouble making friends, and her occasional outbursts of frustration when her muscles wouldn’t work right didn’t help matters.
Miranda’s mother, Sheila, quickly realized she needed to work closely with the school to ensure that Miranda got special services and was allowed to participate in normal school activities to the greatest extent possible.
Sheila Jackson educated the staff at Emory Elementary School in Imperial Beach, Calif., about Miranda's multiple conditions and stressed her need for full inclusion in a regular classroom. This worked fairly well on an academic level, but as the MMD progressed, staff began to exclude Miranda from riskier activities, such as playing on the monkey bars.
"Miranda is very intelligent and knew people were treating her differently," Jackson says. "That caused her to doubt her own abilities."
After several parent-school meetings, new goals were written into Miranda’s IEP (Individualized Education Program), the legal document that spells out the special services, accommodations and modifications a school will undertake to ensure a free appropriate public education (FAPE) for a student with a disability. Typically, March through June is the "season" for updating IEPs, although meetings can be held at any time by parent or school request. (For more on special education law, see "A New IDEA".)
To ensure Miranda’s right to a FAPE, her IEP stated she could "participate in all activities with the right to decline at her discretion." Other IEP goals addressing her socialization and coping skills included:
|Miranda Jackson, center, on a Girl Scout field trip|
These simple IEP goals had a powerful effect, Jackson says.
"Miranda has greatly improved from the simple daily interaction with her fellow students," Jackson says. Having these goals placed more responsibility on Miranda and that led to greater self-esteem and her desire to socialize with peers, her mother says.
When building an IEP, it’s important to focus on "the whole child," Jackson says. "Appropriate socialization with peers is important for the child to be ready to reach the educational goals outlined in the IEP.
"Socialization is highly relevant to every child’s success in school and in all aspects of life."
School and friends
If a child lacks friends, there can be a variety of reasons. Some children are naturally shy or have poor social skills. Some neuromuscular diseases, such as Duchenne muscular dystrophy (DMD), can affect behavior, causing children to seem withdrawn or antisocial.
Mobility limitations, slurred speech, long illnesses and simply feeling different from others can contribute to social difficulties. Teens with muscle diseases may withdraw from social contact because of the extreme self-consciousness some adolescents feel.
Carla and Bill Ren of Carterville, Ill., worried this might happen to their son Billy, who has DMD.
"I’d noticed at MDA summer camp that when kids got to the 14-to-15 age range, they seemed to get kind of depressed," Bill Ren says. "When a child is down on himself, it’s harder to stay healthy. You’ve got to have friends, like everybody else does."
Students with physical disabilities "may have lower levels of self-esteem and even develop anxiety toward interacting with peers. It’s not only advantageous to have socialization skills, but imperative," concurs Jamie Gant, a psychology doctoral candidate at Oklahoma State University in Stillwater. She’s a psychology intern in a Houston school district, and has volunteered at MDA summer camp for 11 years.
Parents need to pay attention to their children’s friendships, ask questions about friends and socialization at IEP meetings — maybe even go to school and observe for themselves, Gant suggests.
|Sarah Schwegel (second from left), a sixth grader at North Kirkwood Middle School, Kirkwood, Mo., participates in a class project. Photo by David Kennedy|
Social skills and friendships prepare kids for successful adult lives, says Sandy Klein of Kirkwood, Mo., mother of Sarah Schwegel, 11, who has spinal muscular atrophy type 2 (SMA). Sarah was MDA’s National Goodwill Ambassador in 2001.
Inclusion fosters socialization
Not all children with neuromuscular diseases have social problems, and not all social problems need to be formally addressed through the IEP process.
But it never hurts to get it in writing, says Monica Moshenko of Williamsville, N.Y., mother of a boy with Asperger’s syndrome (a form of autism). She’s founder of Poweradvocates, a volunteer organization that helps parents prepare for IEP meetings, and host of "Disability News and Views" radio show (www.disabilitynewsradio.com).
|Monica Moshenko with her son Alex|
Moshenko notes that "if it’s not written in the IEP, you may not get it. And you’re not able to challenge through the avenues open to you when there are problems."
By far one of the most effective ways to help a child with disabilities feel confident and make friends is through full inclusion in the regular activities of the school, in as natural a way as possible.
Done right, inclusion has a number of benefits, including "natural friendships within the child’s home community," the National Association of School Psychologists says in its "Position Statement on Inclusive Programs for Students with Disabilities."
Other benefits for students with disabilities include improvement in standardized tests, development of social and communication skills, increased interaction with peers, the achievement of more and higher-quality IEP goals, and better preparation for post-school experiences, report Lissa Power-deFur and Fred Orelove in Inclusive Education: Practical Implementation of the Least Restrictive Environment (Jones and Bartlett Publishers, 1997).
Less homework, more friends
The Rens believe full inclusion is a key component in Billy’s current active social life at age 16. They took an unconventional approach (not appropriate for all children) to make sure DMD didn’t prevent Billy from having friendships and fun.
When he was in fifth grade in Carterville Community School District 5, the Rens decided "his grades and what he does in school were secondary to us. The social end of it was the most important thing – having friends," his father says. "I wanted him to have friends calling the house to talk to him. I expected that he would be a part of whatever he wanted to be a part of."
To this end — despite initial strong school opposition — it’s been written in Billy’s IEP since fifth grade that he’ll be graded on the work he gets done in class.
This means he doesn’t have to do homework, which tires him out too much to do anything else, his father says. If he misses school owing to an extended illness, he doesn’t have to make up the work, but continues to be graded on work completed in class.
Once Billy reached high school, another IEP goal was added: If Billy wants to do it, he has the right to do it.
This has meant Billy’s inclusion on the football and wrestling teams as a player, not – insists his father — a manager.
|Billy Ren, suited up as a member of the Carterville High School Lions football team|
Although he uses a power wheelchair and can’t physically compete, he’s earned a high school letter by faithfully showing up for all practices and games and participating in whatever ways he can. He starts football plays with his wheelchair horn, keeps stats and sends them to the local newspaper. (He and his chair even got decked during a wayward sideline play.) He rides the bus with his teammates to away games and celebrates or cries with them afterward.
Some coaches have accepted this arrangement better than others, his dad notes.
Now a sophomore at Carterville High School, Billy also takes shop, even though he can’t use the power tools.
"Him just being there, he’s learning just like the other boys are learning," Ren says. "He has a right to know how things get built and put together.
"[At the IEP meeting] the shop teacher said he didn’t know how to grade him. I said, ‘Is he in class? Is he paying attention?’ That’s the teacher’s job to figure it out."
The result of this level of inclusion? "He’s happy," Ren says. "He’s upbeat. He’s healthy. He has a group of boys who come around on the weekend and spend the night. He’s never been withdrawn, and we credit that to staying in school, doing sports, and everything we try to do to keep him happy."
Working with the school
Sheila Jackson recommends "persistence, not aggression. Information will get you everywhere."
Anticipate a long process whenever you’re asking for something unusual, and be prepared to patiently and diligently follow through. Owing to budget cuts, schools often deny special education services to students with disabilities who are doing well academically, saying the issue doesn’t affect their educational performance. The parent then has to make the case that it does.
Collect research, outside evaluations and letters of support from social workers, doctors, case managers, teachers, others. Sheila Jackson goes to IEP meetings "prepared as if I were an attorney presenting a case for trial." She recommends always bringing a parent advocate, spouse, family member or friend for support.
If problems arise in implementing the IEP, skip the phone and write a letter, Moshenko advises. "Create a paper trail. If necessary, send a copy to your senator or state’s Department of Education. It’s very effective. I have never had to hire an attorney."
Pave a different path
Today an active third-grader, Miranda Jackson, 9, has made friends and even ventured to a few birthday parties. She plays violin in the school orchestra and participates in Girl Scouts and horseback riding outside of school.
|Miranda Jackson (center) and cabin mates at MDA summer camp|
"Miranda has grown emotionally in ways that just would not have been possible if she had continued on the path the school staff paved for her in first grade," Jackson says. "She’s acquired the skills necessary to form friendships and has the confidence to stick up for herself when the need arises.
"At first the school staff chose to focus on what Miranda can’t or shouldn’t do, rather than on her abilities. But after much discussion, we all agreed that a few simple changes would result in a more emotionally stable student, who in turn, would require less intervention."