arents often find that the services offered to their children with learning disabilities are fragmented and confusing. Monitoring and overseeing the care and treatment can take so much time that some parents regard it as a full-time job.

When her sons were in middle school, Debra Berger spoke to their teachers so often they recognized her voice on the telephone. As a parent of two sons diagnosed with learning disabilities, Berger learned quickly how important it is to monitor their education closely.

"You don't get the gold stars for sitting passively and letting them tell you what your child needs," says Berger, now a Lesley graduate student researching special education issues. "You know your child best."

As a parent of children diagnosed with learning disabilities, Berger is not alone. About 2.4 million U.S. school children have been diagnosed with learning disabilities, according to the National Institutes of Health, which estimates that 120,000 additional students are diagnosed every year. Altogether, NIH estimates that 15 percent of the population is affected by learning disabilities.*

As the number of children with special needs continues to rise, a trend toward inclusion has made it all the more critical for parents to be actively involved in their child's education, says Jerome Schultz, a neuropsychologist and specialist in learning disabilities. In recent years, most children with learning disabilities have been integrated into so-called "regular" classrooms for most of the school day, with their education the shared responsibility of regular and special education teachers.

"Parents have to be aware that when inclusion is done well it's generally regarded as a good thing," says Schultz. "But the reality is, in many cases, it isn't done well." With all the focus on learning disabilities, many parents assume that the majority of teachers are prepared for special education students.

Only five years ago, inclusion was not a common practice. Nowadays, the average teacher, who generally has not undergone formal special education training, has five to six children diagnosed with learning disabilities in his or her classroom.

"When the effort is not supported, what often occurs is not 'inclusion,' but a more insidious form of exclusion," says Schultz, clinical director of the Learning Lab @ Lesley.

For this reason, says Schultz, parents of a child with learning disabilities need to closely monitor their child's education.

To understand how their child learns, Schultz encourages parents to request that the school or an outside consultant conduct an evaluation. If choosing an evaluation conducted by the school system, be aware that the results may be couched in terms of what the school system is able to provide and not necessarily what's needed for the child's success, advises Schultz.

By consulting an expert outside the school system, he says, parents have a better chance of learning what the child needs - not just to survive, but to flourish. The challenge then is helping the school find the appropriate resources so the child's needs can be met.

Jamie Wallace, learning specialist at the Center for Acadparents to seek a thorough explanation of their child's learning style. Parents need to understand exactly how their child's learning process is different from other children, and become aware of what steps to take to be sure the child is getting the necessary support.

"For someone who's not in the field, a thorough neuropsychological evaluation can be very daunting and mysterious," says Wallace.

Once parents understand how the child learns, understanding how the child is being taught is a crucial next step to ensure that learning is taking place.

Schultz advises parents to seek from other parents of children with special needs recommendations for schools and teachers with good track records. Parents should also ask the school principal about the special education training teachers have had. "Ask them, 'How many times have you done this, and how well?'" says Schultz. "It's a risky business. If you were to visit a plastic surgeon for work on your face, how comfortable would you be if they told you they've never performed the operation before?"

Making a presence in the classroom is imperative, according to Schultz. He highly recommends volunteering at the school. Or, if a parent's work schedule makes this impossible, parents can volunteer in other ways - running errands for the teacher, or obtaining equipment or supplies for a project. "Do something that builds a bridge between you and the school in a positive way."

Regular communication - in person, by letter, or by email - is also a must. Experts say the communication effort is not just for teachers to keep parents informed, but for parents to educate teachers about their children.

"It is crucial for parents to stay abreast of their child's day-to-day school life, to be aware of weekly assignments and their child's progress," says Wallace. "Talk to your child about those assignments which were difficult and why, and maintain communication with the teachers about this. Without regular communication between parent and child, understanding what is happening in school and what is effective may remain unclear."

Observation is key, says Mary Beth Curtis, director of Lesley's Center for Special Education. For instance, if a child helps out in preparing a meal, parents may notice ways their child is most successful in learning new things. Are they verbalizing the steps? Breaking it down into tiny steps? Learning by doing? "That's the kind of information parents can have as compared to teachers," she says. "Teachers don't have that one-on-one contact as often as parents."

Some parents write personal profiles of their children and share them with teachers - a technique that works well, says Schultz: "Susan has a hard time using words to express herself," or "Alex can demonstrate what he knows best if you..." This is especially helpful each new school year when the child changes teachers. By writing the profiles, teachers and parents can keep the momentum.

Even when parents take all these steps to ensure good communication with teachers, parents don't always ask the right questions. "Parents will often ask, 'How is my child doing?'" says Curtis. "The better question is, actually, 'What is my child learning?'" If a teacher says, "Your child is doing really well," the best response is, "'Show me how you know that.'"

"Very often, learning is overshadowed by performance concerns," warns Curtis. As a result, the curriculum may be modified so that the student appears "successful," but is not really learning because the curriculum ceases to be challenging.

If your child is on an individual educational plan (IEP), adds Schultz, ask the teacher to specify which objectives the child is doing well. "Ask the teachers to demonstrate how they know the child is succeeding." Schultz warns that without this level of specification: "Many parents hear general words of encouragement for several years and then later that, 'Your kid failed. He's not going to graduate.'"

Learning how to speak up and ask the right questions is crucial for parents, but it's equally important to impart those lessons to the child, and to make sure the child understands his or her disability. The reason is that when children understand there is something different about the way they learn, they are less likely to blame themselves or think of themselves as stupid, says Schultz.

"You can tell a small child, 'When you have trouble with reading, it's hard for your ears to hear the sounds,'" says Schultz, as an example. "Tell her, 'It's not because you're not smart. It's because people are smart in different ways.'"

Experts also say it is important for parents to give children a sense that they are supported. "It's very important for children to understand what's different about me, rather than what's wrong with me," adds Curtis. "They must understand their strengths, and the things they do well, as well as their differences. They need to recognize that they are capable of learning."

Debra Berger also stresses that parents need to teach these children how to be their own advocates. She began bringing her son to IEP meetings when he was in the sixth grade to listen and gradually learn to speak for himself. "In high school, you're not going to be there and he's going to have to deal with the problems himself," she explains. But until they reach that stage, says Berger, "you can't be a shrinking violet. You've got to speak up for your child. Remember that they will suffer more if they don't get the accommodations they need."

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* according to The International Dyslexia Association, Baltimore, Maryland.

Lori Ann Neri is the communications specialist for the public affairs office.

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The Learning Lab @ Lesley is a learning assessment center designed to ease the burden on parents of monitoring the services of their children with special needs and provide support to teachers, who may need additional resources to do their job well. The Learning Lab's "Networks for Success" case management system provides a vehicle for parents and professionals to better exchange daily information. A case manager, using the Internet, coordinates communication among all of the professionals involved in the child's care, and keeps parents up-to-date through regular contact.

For more information about the Learning Lab, contact Clinical Director Jerome Schultz, Ph.D., at 617-349-8965 or jschultz@mail.lesley.edu.