Part One of a Two-Part Series (see Part 2)
By Noelle Salmi
Disabilities, Disorders, Differences
Learning disabilities like dyslexia are often conflated and confused with other disorders that contribute to learning challenges such as attention-deficit disorder. But they are distinct problems.
The National Institutes of Mental Health (NIMH) defines Attention Deficit/Hyperactivity Disorder (AD/HD) as a neurobiological condition characterized by inattention, hyperactivity and impulsivity. The NIMH estimates that between three and five percent of school-age children have AD/HD. Although AD/HD is not considered a learning disability, it can seriously impair a student’s performance in school.
Within the public school system, children with AD/HD may be eligible for accommodations under the label “other health impaired.” Such accommodations may include preferential seating to eliminate visual distractions or a separate room for test taking so a student can read exam questions aloud to stay focused.
Because AD/HD is the result of a chemical imbalance, many patients respond positively to medication. Conversely, learning disabilities cannot be corrected with medication. But the disorders sometimes overlap: LD Online estimates that up to 30 percent of kids with AD/HD also suffer from a language-based learning disability, and many children with learning disabilities also have attention issues.
Rosalie Whitlock of the Charles Armstrong School says that when some students with learning disabilities receive structured instruction properly geared to their learning styles, their attention issues may improve. For those kids with true AD/HD, she recommends treatment using a combination of nutrition, medication and behavior modification. As with all causes of learning difficulties, proper diagnosis is the critical first step.
When Pacifica mom Laura Maloney first suspected her daughter Sarah might have a learning disability, she decided that Sarah would not have the terrible experience in school she had suffered.
Maloney, 41, was diagnosed with dyslexia in third grade. Because she was also considered gifted, she received no special accommodations. “I had no clue what was going on with me and why I couldn’t do the simple things that other kids could do,” says Maloney. “The educational system really failed me, and it affected me for years and years.”
Her daughter Sarah, now 13, is also dyslexic, but Maloney says, “I’m hoping that by being honest and open with my daughter about exactly what’s going on with her, she can know she’s smart and that everybody struggles with certain things … We’ve told her all along, you’re going to have to work a lot harder than everybody else. That’s just the way it is.”Though her daughter will have to work hard, Maloney has also ensured that Sarah, who enters eighth grade in September, knows what accommodations she needs – like a seat closer to the board, not having to read aloud in class and extra time on tests – and feels confident asking teachers for them.
Unlike her mom, Sarah benefits from an educational system that is increasingly knowledgeable about different learning styles and the need to accommodate them. And a recent change in federal regulations gives states more flexibility to determine which students qualify for special education assistance. Nonetheless, many parents and kids with a learning disability say the road to getting needed help is long, hard and sometimes expensive.
According to the National Institutes of Health approximately 15 percent of students – about 1 in 7 – has some type of learning disability. Such disability stems from a neurological disorder that affects a student’s ability to read, hear, write or process certain information.
Learning disabilities are often hard to spot, says Jane McClure, a San Francisco-based educational psychologist who advises students, approximately half with learning problems, on college admissions. “I talk about it as a ‘hidden’ disability because a person might seem absolutely normal in every way, and then when you ask them to read out loud or to write a paper, you say, ‘This person really has a problem,’” she explains.
McClure distinguishes language-based learning disabilities like dyslexia and dysgraphia, as well as auditory processing disorders (difficulty understanding spoken language), from attention-related learning problems. Although attention deficit issues can appear similar in the apparent discrepancy between a student’s intelligence and school performance, they are not technically considered “learning disabilities” (see “Disabilities, Disorders, Differences”). Yet both learning disabilities and attention deficit issues – sometimes called collectively “learning difficulties” – benefit from similar strategies for school success.
With all learning problems, the first step is a professional evaluation, says Dr. Robert Verhoogen, a San Francisco pediatrician who specializes in learning difficulties. He says psycho-educational tests should answer the fundamental question, “Why is the kid struggling?” He notes that test results that don’t actually diagnose a child’s learning difficulty are incomplete.
For kids in private school, independent testing done by outside experts can cost between $2,000 and $3,500, but by law public schools must provide free educational assessments. In some cases, parents may need to take the initiative, says Joe Feldman, executive director of the Community Alliance for Special Education (CASE), which advises parents of public school children in eight Bay Area counties. Feldman says parents who suspect a learning disability should write to their child’s teacher, school principal or special education administrative office to request an educational assessment of their child. Local advocacy groups like CASE, Web sites and books provide templates for such letters (see Resources).
Feldman says parents should consider personally delivering their request to make sure that it’s received and date-stamped, which sets in motion a legally mandated timeline. The public school district has 15 days to answer the referral request and develop an educational assessment plan. After parents sign off on the plan, the district then has 60 days to complete comprehensive educational testing and set up a meeting with the parents, regular classroom teacher, school administrator, school psychologist, one or two special education teachers and others who may have evaluated the child to draw up an Individualized Education Program (IEP).
Although meeting with so many school officials can be intimidating, Feldman says parents definitely should provide their own input at the IEP meeting. Should a school district say a child is not lagging sufficiently to merit special education services, that student may still be eligible for accommodations in the classroom. The key to getting what kids need, says Feldman, is knowledge of the law and recognizing that as a parent you are, legally, “equal co-participants” in your child’s education.
Working with Schools
Whether your child is in public or private school, it’s a good idea to maintain an open, collaborative relationship with the school throughout the assessment process. Kim Gitnick, a former San Francisco Unified School District special education teacher, says parents should be persistent but cordial. If schools are “following through and they’re meeting their timelines, there’s no need to be aggressive,” says Gitnick.
Gitnick recommends parents bring in “experts,” such as a tutor or LD specialist, when meeting with the school. If the child has had an outside assessment, or receives tutoring, those experts’ unemotional, professional perspectives can be invaluable. Another helpful tactic is ensuring that all points in the IEP, or its private school equivalent, be written as clearly as possible, with specifics on how they’ll be accomplished. For example, Feldman says if parents agree to weekly updates from teachers, the way they’ll get them – via email, for example – should be in writing.
While communication with teachers is critical, it becomes more difficult in middle and high school, where kids have multiple teachers. Rachel Kellerman’s daughter Lisa, who graduated from Palo Alto High School last June, was diagnosed in third grade with a specific learning disability and visual spatial motor integration issues. Every school year, Kellerman distributed a copy of Lisa’s IEP to each of her teachers. Kellerman says she’s also grateful to a school resource specialist who was a “phenomenal presence” in Lisa’s educational life.
Rosalie Whitlock, head of Belmont-based Charles Armstrong School for dyslexic learners, says finding the adult on campus that will advocate for your child is crucial. When she attends meetings with school officials to discuss a child’s educational programs, Whitlock always asks, “Who is the adult in charge of this child?”
Not only can on-campus adults assure students’ special learning needs are met, they can also offer insider knowledge about which teachers are most open to different learning styles, says Whitlock. Research shows that a principal motivator for kids is the presence of a trusted adult who’s interested in their well-being. “The student-teacher connection is not something magical. It’s good common sense,” adds Whitlock.
Beyond school, parents may consider enrolling their child in summer reading or math programs designed for kids with learning difficulties, some of which offer student loans. Parents might also opt for after-school tutors (which can cost up to $75 per hour) to help their kids stay organized and keep up with more challenging courses. Many technological tools are available to students with learning differences, including books on tape for struggling readers and dictation programs or keyboards for those with writing difficulty.
As kids get older, the best thing parents can do is help them learn to advocate for themselves. That’s not always easy. Kellerman says she encouraged her daughter to start advocating for herself in middle school, but Lisa was resistant. “In middle school, you don’t want to be different, so it was a struggle to get Lisa to be more aggressive about getting her accommodations,” she says. Ultimately, Lisa did start speaking up for herself and now feels confident she’ll be able to do the same at Loyola Marymount College, where she’ll start as a freshman this fall.
Because of her own experience, Laura Maloney wanted her daughter to begin advocating for herself as early as possible. She brought Sarah into meetings with school staff at the start of every academic year, and by fourth grade, Sarah was carefully explaining to teachers how she learns and what she needs. Sarah, in turn, says such self-advocacy has made her a “stronger person” who is more aware of her specific strengths and weaknesses.
The poised 13-year-old credits her success to her mother. To parents of children with learning struggles she says, “Always make sure you’re behind them, no matter what, because having my mom behind me was the most helpful thing in the world. I don’t know what I would have done if she hadn’t always been there helping me and telling me that it’s OK.”
Part two of our series on learning disabilities focuses on how to support your child outside of school.
Agencies and Support Groups
• Community Alliance for Special Education (CASE) – www.caseadvocacy.org; 415-928-2273 – Provides legal support, representation, free technical assistance, consultations and training to Bay Area parents whose children need special education services.
• Parents’ Education Network (PEN) – www.parentseducationnetwork.org; 415-751-2237 – A parents’ organization dedicated to fostering understanding of learning differences and promoting collaboration between parents, educators and administrators.
• Support for Families of Children with Disabilities – www.supportforfamilies.org; 415-920-5040 or 415-282-7494 – Provides information and assistance to families of children with disabilities or special health care needs, including training on managing the IEP process.
• A Parents’ Guide to Special Education: Insider Advice on How to Navigate the System and Help Your Child Succeed, by Linda Wilmhurst and Alan W. Bruce, American Management Association, 2005. Available at www.amanet.org/books.
• Learning Disabilities from a Parent’s Perspective: What You Need to Know to Understand, Help and Advocate for Your Child, by Kim Glenchur, MA, MBA, Pince-Nez Press, 2003. Available at www.pince-nez.com.
• Learning Outside the Lines, by Jonathan Mooney and David Cole, Fireside, 2000.
• Special Education Rights and Responsibilities, co-written by CASE and Protection and Advocacy, Inc. Provides a thorough, up-to-date look at special education. Download it from www.caseadvocacy.org or call CASE (415-928-2273) to order a printed copy.
• LDonline.org – Web site and online community for parents, teachers and other professionals dealing with learning disabilities.
• SchwabLearning.org – Web site with extensive information about learning differences and practical strategies for parents of children in kindergarten through high school.