General

You are here: Home Resources Family Stories Trail of Clues

Wednesday16 April 2014

Trail of Clues

By Carolyn D.

NOTE: In writing this article, the author decided to italicize aspects of her family's story that highlight specific clues they discovered about the detection and treatment of language-based learning disorders.

"I already." "I already." I already what? This seemingly benign phrase turned out to be the first indicator that our daughter, Jessica, had a language-based learning disorder (LBLD). An astute teacher at her private nursery school brought this to our attention when she was four-and-a-half years old.

Jessica was adopted when she was three-and-a-half and we knew she'd had few opportunities to speak Chinese in her foundling home. So our initial reaction to what we were being told was to say, "She's only been with us for one year. Give her a break!"

A while later, about two months into her pre-kindergarten schooling, the teacher raised with us a concern regarding Jess's immaturity and the social consequences related to her inability to carry on conversations with friends. Four- and five-year-olds didn't have the patience to wait for Jess to find the words and retrieve them from wherever they'd been stored in her brain. The school psychologist observed Jess in the classroom, and after she spoke with us we all agreed, "What little girl, plucked from her homeland only 18 months earlier, wouldn't need extra hugs and kisses?" We would later learn that immaturity is a common trait of children with LBLD - one that is an asset in later life.

Halfway through pre-kindergarten, her teacher suggested that perhaps Jessica should repeat the school year. Being much older parents, we were against this idea, and our decision not to hold her back was one we'd come to realize was the right one. Repeating a grade is not the solution to LBLD. But because of what teachers were advising us, we realized that we needed to act on Jessica's behalf to define the "real" problem so that we could find the appropriate solution for her difficulties.

Responding to the Clues

Because of her age - she was by now older than three - Jess was not eligible for early intervention services. However, our health care insurance would pay for a child development work-up, including speech and language therapy analysis. This assessment indicated that in language-based areas Jess was lagging, but these tests could not attribute how much of it was due to English being her second language. She was found to be above average in many other learning areas. Later we would discover that this is another common trait of her LBLD disability. Dyslexics are often characterized as having average to superior intelligence.

Federal disability guidelines require that public school systems evaluate children who live in a community and provide services whether or not they attend public school. Our town sent a special education teacher to observe Jessica in her private school setting. She recommended that she be tested for issues related to English as a Second Language (ESL), and because her vocabulary was lacking, she qualified for those services. We were relieved. A problem - ESL - had been defined, and a solution offered - tutors. Her father had expressed concern earlier that Jess didn't know her ABCs or colors, but I'd replied by saying that "lots of kids have trouble with colors and ABCs". That's true, just as it's true that one out of every five children has some form of LBLD.

We hired an ESL teacher who worked with Jess on learning letters and sounds and on pre-kindergarten sight words. (During this process, we also learned that health insurance pays for speech services only if the problem is caused by accident or catastrophic medical condition.) Her difficulty with sequencing turned out to be another clue to LBLD.

During the school year Jess had ESL lessons twice a week with the paid tutor and twice a week at the public school. This schedule of services presented challenges for us with our work schedule and also for Jess and her kindergarten teachers, since she was not arriving at her classroom until ten o'clock each morning, but we'd been advised that it would be best for Jess psychologically to remain in the private school with her friends and sister instead of being uprooted again. We agreed.

Through the summer the tutor continued to work with her, and although concerned with Jess's slow progress, she was not yet ready to label her difficulties as "developmental." Yet there were other noteworthy signs such as Jess wanting to sit on her teacher's lap during circle reading time and being fidgety when she didn't. When she was by her teacher's side, Jess could look at the pictures. But when her teacher wasn't near her, Jess couldn't process the vocabulary fast enough, and so she would tune out.

In first grade, Jess received assisted studies with Simple Math - a special approach to teaching basic math skills. (The school's standard math curriculum - the Chicago Math system - is very word based and thus enormously difficult for children with language-based learning disabilities.) By December, her tutor determined that Jess had a phoneme (smallest unit of sound) problem, so we decided to request a more focused learning analysis. Based on that, we received a confirming diagnosis of LBLD with a recommendation that we seek an additional psychological evaluation.

Finding Resources and Support

At this time, we were leaving for a family vacation, so we took along Sally Shaywitz's book, "Overcoming Dyslexia," and Mel Levine's "A Mind at a Time," which became our bible. The Web sites AllKindsofMinds.org and SchwabLearning.org soon replaced our daily newspaper.

In Rhode Island we are extremely fortunate to have many resources available to support children like Jessica. The Hamilton School at Wheeler is nationally recognized for its educational focus and success. The Highlander Institute (formerly known as the Dunn Institute) in Rhode Island  offers seminars to educate parents on the basics of LBLD, such as how to interpret the results of IQ tests (designed for those who can read), how to obtain mandated services, how to use the No Child Left Behind Act of 2001, how to develop the right Individual Education Plan (IEP) and 504 plans, how to use available tax deductions, and the Orton-Gillingham (O-G) approach to language. Jess's current school offers O-G specialized instruction, which is a structured, sequential, cumulative and multisensory approach to teaching reading and writing. The Dunn Institute held a six-week summer camp in which Jessica's learning also involved O-G teaching.

An evaluation of Jessica was done in our community at the end of first grade, using the mandated team approach. With all good intentions, her ESL teacher still felt strongly that Jess's problem could be handled with ESL whole word approach. The school department, like us, wanted to take the more cautious approach and establish an IEP.

This past summer, Jessica had some type of class work for 23 hours per week. For this coming year, although the public schools are not directly providing the services, they will test quarterly for progress to be sure the goals we set for Jessica are being met. We hired an O-G certified tutor who will work with Jessica twice a week for an hour. She will receive three hours per week within her private school of O-G teaching. She will receive additional grade level reading tutoring twice a week for two hours each session. And then there is still reading with Mom and Dad at night!

You might want to ask, "When does this child have a chance to be a child?" She actually has no problem with her schedule, and feels good about how much she has progressed. She looks forward to reading with us and showing off her new talents. Our hope for the future though is that she will be accepted in the third grade the Hamilton School at Wheeler. Their focused instruction, which is coordinated throughout all subject materials, will allow Jessica to have a more normal school day.

Advice for Other Families

Based on our experience, our advice would be:

  • Run, don't walk, to your nearest bookstore and educate yourself;
  • Search extensively on the Internet to find the resources available;
  • Seek out and take advantage of every service to which your child is entitled;
  • Take off the rose-colored glasses, and then trust your instincts. At each juncture we questioned were we making the right decision. We talked, we agonized, we lobbied where we thought enough attention was not being paid. We sometimes felt like, "Are we the only ones who can see what she needs!" You know your child best and are her best advocates;
  • Ignore advice to wait and see. The earlier you intervene, the easier it will be for your child to succeed. We've learned that children with reading differences will achieve grade level in reading if they receive help by the first grade. While it is still possible to help an older child with reading, those beyond third grade require much more intensive help.

As for the future, we now know that dealing with learning differences can teach the child how to bounce back - how to come from behind and end up a winner. We've learned that dyslexia is a lifetime condition and that it doesn't have to be a barrier to achievement or happiness. In fact, those who share Jessica's condition include Winston Churchill, Jack Horner (the dinosaur fossil hunter who was the model for the Jurassic Park scientist), Albert Einstein, Thomas Edison, and General George Patton.

Additional Resources

National Center for Learning Difficulties
The power to hope, to learn, and to succeed

Get Ready to Read!
Preschool Teaching, Reading Resources and Learning Activities

All Kinds of Minds
Understanding Differences in Learning