Friendships Matter:
Building IEPs That Build Social Relationships
by Christina Medvescek
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| Miranda Jackson |
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 will ambulate independently whenever possible to avoid dependence on
her peers.
- Teachers will help Miranda socialize by asking her to use her academic skills
to help students who are struggling academically.
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."
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| Miranda Jackson, center, on a Girl Scout field trip |
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.
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.
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| Sarah Schwegel (second from left), a sixth grader at North
Kirkwood Middle School, Kirkwood, Mo., participates in a class project. Photo
by David Kennedy |
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).
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| 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.
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| Billy Ren, suited up as a member of the Carterville H.S. 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.
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| 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."
See also:
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