Making a difference for special-needs students and their families
By Celeste Behe
Are you a teacher or school administrator who works with special-needs students? If so, consider yourself twice blessed.
You have the power to make a positive difference, in the lives of your students as well as in the lives of their families. The following strategies can help.
Acknowledge the family as the most important institution in the child’s life
St. John Paul II wrote, “Developing a profound esteem for [children’s] personal dignity, and a great respect and generous concern for their rights … is true for every child, but it becomes all the more urgent … when [the child] is sick, suffering, or handicapped. …When children are more vulnerable and exposed to the risk of being rejected by others, it is the family that can most effectively safeguard their dignity” (Familiaris Consortio).
Rebecca Freeh Thornburg notes, “I cannot overstate the importance of families.” Thornburg, a pediatric speech-language pathologist and augmentative communication specialist, was diagnosed with cerebral palsy at two years of age and speaks from both a professional standpoint and from her own experience as an individual with a disability.
“Families will always know their children best. They are always considered critical members of a child’s educational team and should always be empowered to participate fully in, and even drive, a child’s educational planning.”
Encourage collaboration between families and professionals
Karen MacDonald’s 19-year-old daughter Rachel has a complex genetic disorder known as Prader-Willi Syndrome. For the past 11 years, Rachel has been a student at the Mercy School for Special Learning, which serves children and young adults with developmental and/or intellectual disabilities.
“About four times a year, Mercy has parent meetings in which professionals are brought in to speak on a variety of topics that are pertinent to families with special-needs children,” says MacDonald. “Knowing that we may have a hard time getting a sitter, the staff even offers babysitting during the meetings. Yet quite a few families don’t attend, and it frustrates the school, understandably, when only a handful of parents are present to receive the information.”
Lack of interest in such opportunities may stem from what Daria Sockey calls an “us versus them” mentality. Sockey’s 20-year-old Michael has autism.
“If professionals, especially the ones high up on the ladder of administration, see themselves as the Ones Who Always Know Best, the parents will spot this a mile away.”
Sockey offers practical advice to professionals who want to engage families. “Go into meetings with the assumption that, even though you might have more knowledge in some technical areas, the parents spend more time observing and thinking about that child than you do. Take them seriously.”
Thornburg observes, “Professionals and family members each hold key information needed to make the best educational decisions for a student with special needs. The more that families can be encouraged to participate and advocate in the school setting and the school can learn from and integrate what is helpful at home, the more a student can shine.”
Communicate with family members on an ongoing basis
“Open communication is critical,” notes Thornburg. School staff, administrators, and teachers can expand trust simply by receiving information as readily as they would give it. Much can be learned by asking parents about their goals and concerns for their child. Attentive listening will not only yield helpful information about the child, but will also aid in fostering a meaningful relationship with the child’s family. When the time comes, those same teachers and administrators can share their own assessment of a child’s capabilities. Sometimes, as Karen MacDonald relates, there are surprises in store.
“I remember one teacher rebuking me for tying Rachel’s shoes. I thought Rachel would never be able to do it herself. The teacher assured me that Rachel was capable, and guess what? She’s been tying her shoes for years now.”
It’s important to open conversations on a positive note. “Lead communication with the things that have gone well (or even just OK) before getting to the bad stuff,” recommends Sockey, who advocates daily communication between school and family. “Teachers need to send some form of communication home every day. This is especially important when the child’s verbal skills are minimal. Don’t wait to communicate until the child is presenting challenging behavior, or parents will learn to dread the sound of the teacher’s voice on the line.”
Adds Thornburg, “Find a mode that is comfortable for both staff and family, whether it be texting, phone calls, or a shared communication notebook — and use it daily. It’s important to always respect privacy and confidentiality, but equally so to communicate. Always.”
Set expectations for special-needs students
“So many of us whose children have challenges are tempted to baby them because they have so much to deal with,” says MacDonald. Although it is natural for parents to want to ease the way for their special-needs child, students with disabilities can thrive in a more rigorous environment.
“I’ve had so many ‘I love this’ moments concerning the way things are done at Rachel’s school,” says MacDonald. “They help kids do age-appropriate things. Academics are stressed as far as the students’ capabilities will allow.
Rachel is responsible for doing homework several nights a week, and if she doesn’t complete her homework, as a consequence she’ll lose recess time to finish it at school.
“Some students function at such a low level that they aren’t able to do much independently, but the staff works one-on-one with them and talks them through each task. Some students have responded in ways that surprised me — they truly were more capable than I imagined.
“These things may not seem to be direct support to families, but honestly, they are! We parents need to have others holding our children accountable so that they mature and grow in preparation for the adult world that they’ll enter in a few short years.”
Help to integrate special-needs students into the community
“While the family environment is critical, the connections made through visibility and involvement in community events and activities from an early age help to set the expectation for a child’s success,” asserts Thornburg. “While the child gains much — social opportunities, communication skills, mobility and navigation strategies, problem-solving and life skills, and employment prospects — the community, too, is enriched.”
Some schools offer programs that give special-needs students the opportunity to acquire hands-on work experience with community businesses. MacDonald’s daughter regularly takes part in one such program.
“Teens have a work experience each year. The students have a job coach, and they learn various skills that hopefully will make them more appealing as employees when they graduate.”
Thornburg believes that by working to integrate special-needs students into the community, we share in the responsibility that the students’ families too often bear alone.
“As we get to know families and children with special needs, restaurants might learn to offer alternative communication access so that an individual can order their own meal. Neighborhood play spaces become inclusive, buildings more accessible, schools more accommodating, worship spaces more welcoming, so that these children can participate more meaningfully in community.”
Thornburg says, “God’s kingdom, here on earth and in heaven, is enriched when all are welcomed and cherished for our unique talents and abilities. In the end, if the educational services provided to the student fail to identify, incorporate, and respond to a child’s whole personhood, helping him or her to become all God created them to be, then we have failed in our purpose as Catholic educators. That’s the highest bar that can be set, but it is one that Catholic educators are equipped to meet.”
One of the clubs offered by Pennsylvania’s Allentown Central Catholic High School is Best Friends Forever, which promotes friendships between Central Catholic students and special-needs teens at the Mercy Learning Center. “Buddies” meet monthly to take part in various activities, such as movie night, cookie baking, and craft projects.
Says Karen MacDonald, whose daughter Rachel participates in the program, “Central Catholic students learn how much people with disabilities have to offer, and how similar they are to everyone else. Several CC students have told me they get more out of it than they put in. For Mercy students, having a friend without a disability makes them feel accepted by ‘typical’ people. They also get to take part in activities that they might not otherwise try.
“Rachel had a special experience with Best Friends Forever. About four years ago, her buddy was a senior named Libby. Libby called her every week for the entire school year. They talked and laughed about all kinds of things, just as teenage girls will do. My heart was always full at how kind Libby was and how much she took her ‘job’ seriously. She even picked Rachel up for an outing once. At the end of the year, she said she’d like to keep calling Rachel even after she went to college. And she did for the next three years.
“Of course, Rachel has enjoyed the company of every one of her club buddies. I think the biggest benefit to Rachel, honestly, is that she began to see herself as an equal with other teens. It’s so easy for us, as a family, to treat her as younger, because of her limitations. But we really began to see her acting more and more like a teen as Libby talked with her as an equal.”
Celeste Behe is a blogger, speaker, and ardent Toastmaster. She lives in Bethlehem, Pennsylvania, with her husband Mike and eight of their nine children.
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