Smart Kids With LD

Smart Kids spoke recently with Anne Ford about her new book, A Special Mother: Getting Through the Early Days of a Child’s Diagnosis with Learning Disabilities and Related Disorders. Ford is a longtime advocate for children with LD and former Chair of the National Center for Learning Disabilities, as well as the recipient of the 2004 Smart Kids with LD Community Service Award.  Her interest in the field began when her daughter Allegra was first diagnosed with severe learning disabilities. Ford reflects, below, on her journey from the vantage point of someone who has lived through this experience, and has talked to thousands of other mothers who have embarked on the same quest to help their children:

Since writing Laughing Allegra and On Their Own, I have spoken to countless mothers.  We share so many of the same experiences. I wanted to write a book that recognizes and celebrates the role of the mother in the life of a disabled child.  I also wanted to give hope to these mothers. I well remember those early days when my daughter was first diagnosed with severe LD—the confusion, the sense of isolation, the fear that my daughter’s future was unraveling before my eyes. I hope to speak to the mother who is experiencing those feelings now, and to inspire her to become an effective advocate for her child.

Parents who are new to the world of LD feel at a loss when trying to navigate the system.  One mother, who is also an attorney, said, “I had no idea who to talk to, or what to do, or even if I should trust my own instincts. I had no way of knowing if the school’s advice was the right advice, or if they were holding anything back.”  Many parents have had terrible experiences with the special ed system, and cannot shake the feeling that the school is not doing all it should.  (Of course, there are many others who have nothing but praise for the system).  For some mothers, this difficulty reaches into the home. They meet resistance from their husbands or from other family members who are in denial or think she is overreacting. Simply facing up to the fact that your child has LD can take a great deal of courage.

When parents are new to all this, they feel insecure, and may even feel their questions are too trivial. As the years go by, and they gain more experience, they no longer feel intimidated, and can go too far in the opposite extreme.

Parents must learn to walk a fine line between being firm while also handling situations in a manner that does not spiral out of control.  Some mothers become obsessed with the idea that the school is not doing enough, and escalate matters in ways that actually harm the child’s progress.  I attempt to address these issues in the book.

Changes Over Time

The most urgent concern of a young mother is getting the right help for her child.  Once that has taken place, some mothers realize to their dismay that LD is not confined to the classroom. This brings up a whole new set of concerns, such as difficulties with friendships, social skills, and sibling issues.

I went through all the pain, the fear, and confusion a young mother may be facing today.  When my daughter became an adult, I acquired a whole new set of concerns: employment issues, dating, and most important of all, independent living.

And so I now realize that, yes, the issues change from year to year, but the emotional ties remain the same. For mothers, LD will always be an emotional as well as an educational issue. If you can remain optimistic and determined, you can keep those emotions in check and truly become the special mother your child deserves.

To read more about Ford’s experience and the lessons she imparts, read A Special Mother: Getting Through the Early Days of a Child’s Diagnosis with Learning Disabilities and Related Disorders, by Anne Ford and John-Richard Thompson, Newmarket Press, 2010.

With year-end IEP meetings coming up soon, now is a good time to think about how to help your child succeed in school next year. For students with learning disabilities and ADHD, success depends on their ability to access the curriculum. Making sure there are specific accommodations and/or modifications in your child’s IEP (Individualized Educational Program), based on his individual needs, goes a long way toward leveling the playing field.

Accommodations and modifications are also among the most significant resources available for students who don’t qualify for an IEP that provides special education services—including many children with ADHD, Asperger’s or with learning disabilities that are not deemed severe enough to be identified for special education, but who are found eligible to receive protection under Section 504 of the Rehabilitation Act.

Read about the difference between accommodations and modifications, and take a look at the many examples here to get an idea of the range of possible aids for your child.

By Jane Brennan

Peter was in the fifth grade when a friend asked his mother what he was receiving special education services for. “I don’t know exactly,” she responded. “But what was his diagnosis?” the friend asked. “He’s never been diagnosed. He just gets help in the resource room.”

Peter’s mother would never let her child take medicine for an illness the doctor hadn’t diagnosed. Yet Peter has spent five years receiving treatment for an unspecified learning problem. Who’s to say if the services he’s receiving are appropriate for his needs?

Getting effective help begins with a clear and accurate diagnosis. Without knowing the problem, it’s impossible to know what services are appropriate for your child.

What is a worthwhile diagnosis?

A diagnosis states the disability (“dyslexia,” “nonverbal learning disability,” etc.) and is based on an evaluation that takes into consideration test results and observations made by you, your child’s teachers and the evaluator. (Read about the evaluation process here.)

How can you tell if the diagnosis is accurate?

The diagnosis should make sense to you in light of what you know about learning disabilities as well as what you know about your child.

The evaluator should be able to explain the findings clearly. If he or she doesn’t, it’s possible that the evaluator doesn’t fully understand the nature of the problem, is reluctant to clearly state a diagnosis (which may require appropriate interventions)–or that the diagnosis is not correct.

If what is being done for your child doesn’t seem to be working, you must find out what is wrong—and the best place to start may be with a review of the initial diagnosis.

To learn more about the evaluation process that leads to the diagnosis, read Evaluation Fundamentals on the Smart Kids with Learning Disabilities website.