By Leslie Lingaas Woodward
Parenting a child with learning difficulties can be a lonely journey. It can sometimes feel like there are two worlds: the one that other moms and dads at your child’s school inhabit, and the isolated and often frustrating one you live in.
One thing that has helped me overcome this sense of isolation is the parent support group at my daughter's private school. This eight-year-old group has introduced me to a community of parents who, like me, are grappling with how to help their children succeed in school despite their learning difficulties.
The group offered a lifeline when my daughter was diagnosed with dyslexia in first grade and I struggled to understand what it would mean for her and for me. There was an overwhelming amount of information to process. The parents in this group provided exactly what I needed at the time - others who had wrestled with similar issues, who understood, and offered feedback as I shared my anxieties and questions.
During this critical time, the group provided emotional support and practical advice. If I was looking for a tutor, another parent would have a recommendation. If my child had problems in a particular subject or communicating with a particular teacher, another mom or dad in the group was apt to have "been there, done that" and could offer some useful pointers.
More and more parents at other private and parochial schools are looking at ways to start their own groups. I’ve learned there are many ways to structure them; here’s what has worked for us:
The Parent Group on Learning Differences, as our group is officially called, has the same status as other parent committees within the school. A volunteer chair is responsible for overseeing the committee for the academic year. We’ve found that a two-year term works best.
We hold an evening meeting from 7:30 to 9 p.m. once a month in the school library. The dates are published in the school calendar, and the school's weekly newsletter includes a meeting reminder with specifics about discussion topics. Given the many demands on parents' time, we’ve found phone calls or email notes are also useful reminders of an upcoming meeting.
All parents in the school community are welcome to attend. Some parents are just beginning the bewildering process of learning about learning disabilities (LD). Others are veterans who have been coping with their child's dyslexia or Attention-Deficit/Hyperactivity Disorder (AD/HD) for years. Although many "regulars" are parenting children with identified learning disabilities, others have noticed subtle differences in their child's learning style and want to know more.
One big decision schools must make is whether or not the staff learning specialist or another faculty member should be present at the meetings. Administrators may be concerned that meetings will turn into a parental "gripe session" or that inaccurate information about teachers or programs will be given out if a staff member isn't there. As with the other parent committees, our school has never required the regular presence of staff or administrators at the meetings, although staff are invited to attend.
Our group's founders envisioned an informal gathering where parents could provide one another emotional support and share practical skills to help their kids with LD. Other schools choose to have faculty regularly participate. An advantage of having staff at the meetings is to let them hear first hand what’s working or not working in the eyes of parents. On the other hand, parents may feel they can be more open about school issues if the meeting is for parents only.
Over the years, our committee has learned to strike a balance between informal information sharing, support-type meetings, and more structured programs that feature speakers or demonstrations. The first meeting of the academic year typically is held in October, after families have had a chance to settle into the school routine. At this first "open" agenda meeting, the chair usually asks for ideas about speakers for the coming months and finds out what topics and issues parents would like to address over the coming year.
Because there are often newcomers, introductions are a routine part of meetings. Parents introduce themselves, give their children's names and grades, and describe their learning difficulty.
Open meetings offer a chance to talk about how the school year is going for our children. If things are rough, other parents may have tips on how to smooth the way. We compare notes on how long it takes to complete assignments and what strategies the kids use. We share names of good tutors and computer software programs. Sometimes a parent just needs to vent over the strains of working with her child’s learning disability. A sensitive facilitator can help the group provide support in these situations without getting too focused on any one individual's problems.
Speakers from inside or outside our school community are scheduled on alternate months. Often the second meeting of the year features the school's learning specialists, who describe support programs for kids with LD. The committee also tries to have administrators speak at one meeting each year to talk about programmatic issues that are of particular interest to parents of kids with LD. These might include the use of textbooks versus handouts in certain classes, proposed restructuring of the academic schedule, or course content.
Psychologists and learning specialists from the community have spoken to us on a variety of topics, including the diagnosis and treatment of AD/HD and dyslexia, testing for LD, and high school and college placement of kids with LD. Although we can’t pay them, speakers have been very generous in donating their time. This year, to ensure a good-sized turnout for these events, the committee has decided to open the presentations to parent groups at other city schools.
One of our most popular programs is a simulation of learning disabilities, provided by volunteers for a small fee, through a branch of the International Dyslexia Association. Parents rotate through a set of stations that use audio and visual aids to show what it’s like to have common learning problems, such as difficulty with auditory discrimination, dyslexia, and impaired fine motor coordination.
Support group meetings also offer an opportunity to share information about learning tools parents and kids have found useful. Parents have demonstrated software programs and 4-track recorders used for listening to taped books.
Shepherding a child with LD through the school system takes more than professional support. You can’t be as honest with teachers and tutors as you can be with a kindred parent about your own emotional health. And you can’t call them at night to vent about a particularly grueling evening of homework.
Perhaps most important, parent groups can actually help the whole "village." They often bring about support for all kids, such as effective screening programs, improved reading instruction, and testing accommodations. The strong program we now have is a result of a joint effort that has benefited everyone - kids and parents!