Sep 10, 2012
“She said our son had multiple learning disabilities . . . It was devastating”---Lynne
Lynn and William looked forward to their son, Jonathan, going to a wonderful independent school for gifted and talented children. They were proud and excited when Jonathan scored in the 98th percentile during his entrance testing. For the first six weeks he was at the top of his class. Jonathan was thrilled to finally be a new kindergartner at Indian Creek School, as his big sisters had been before him. One day, Lynn they got the call every parent dreads. Mrs. Randolph, the principal, called them in to have a chat. Jonathan could not do the written work, she said. He not seem to hear what the teacher said. William and Lynn took their son to the physician, and sure enough he had fluid in his inner ears. He was scheduled for surgery to place ear tubes right away. “We were very relieved” said Lynn, who thought that this would solve the problem.
The problem did not go away. Even when he could hear again, Jonathan could not do the work. There was another meeting with Mrs. Randolph, who recommended that he be tested immediately. Lynn and William didn’t hesitate, because as William said, “We trusted her completely.” She referred them to Dr. Jane Snider for an assessment. Since William had a solo dental practice, and Lynn a full time parent, the fee for testing shocked them. But they were impressed by Dr. Snider’s expertise, and decided to move forward. Dr. Snider did extensive testing with Jonathan. They waited for the results.
When William and Lynn met with Dr. Snider, they learned their son had multiple learning disabilities, including reading disability, sequencing problems, and deficits in hand-eye coordination. “It was devastating” said Lynn. Indian Creek recommended that he “not come back.” Jonathan’s grandfather began to refer to him as ‘sickly’ and withdrew affection. Another relative said, “Well, he can always be a farmer.” His grandmother recommended that he get glasses.
William and Lynn began the search. They had no experience with special education, but now they understood what kind of instruction their son needed. Dr. Snider recommended a school where Jonathan could get that help, but it meant that he would be the only child in his class who did not have autism or an intellectual disability. William and Lynn decided to try it for a year. The teacher, Ms. B, understood Jonathan and how he learned. She understood that he was bright enough to get big ideas, but struggled to do his classwork. After a year, he was ready for another school. He needed to make friends again. William and Lynn toured schools. They saw things like kids with learning disabilities in desks facing the wall and out of control classrooms. They arranged for Jonathan to attend a public school near his grandmother’s house, hoping for the best.
Lynn soon learned that, even though Jonathan had an IEP, she had to fight every day for her son to get the help he needed. While the reading specialist understood Jonathan, his classroom teacher, Mrs. R, was “very hard on him.” Mrs. R punished him when he could not do the work. She insisted that he “wouldn’t” do his assignments. No matter how hard Jonathan worked, he was never allowed to take part in the school plays or earn an honor roll reward because of his low grades. Jonathan was humiliated. He was now old enough to realize that he could not do what his friends were doing. At his birthday party, his friends knew he couldn’t read, and took turns reading his birthday cards to him. “I wish I was just normal” Jonathan said.
Lynn began volunteering in the school so that she could intervene on her son’s behalf. “It was not my personality then” said Lynn. She had never been the type to make waves. “I had to read and learn a lot . . I became the expert on special education” she said. “I got materials from Dr. Snider and I had to take over for the classroom teacher.” The reading specialist at the school helped Lynn learn to provide multisensory instruction at home for Jonathan. Lynn spent all of her free time making puzzles, games, and coming up with new ideas for him to practice forming letters. The family spent their leisure time in cub scouts, art classes, soccer, and any other activity where Jonathan could experience success. At one point, when his sister went to Center for Talented Youth classes, Jonathan turned to his father and said, “I’m never going to get to do that, am I?”
After elementary school, the struggle continued. Every year, Lynn had to educate teachers about learning disabilities, and watch every day to make sure her son’s IEP was implemented to the letter. Every year they faced school staff who said things like, “I don’t see how he can be bright when he scores so low.” “It was a daily, yearly struggle” said Lynn, “I was fighting the system all the time.” At one meeting the school psychologist said, “I think Jonathan’s doing very well. He’s learned to accept failure.” Lynn lost her temper and yelled, “Its not your job to help him fail!” “They saw me as a pain in the ***” Lynn said ruefully. “They fought me every inch of the way.”
When he finally graduated from high school, Jonathan told his mother that if she had not been there, he “probably wouldn’t have made it.” It would be great if the story ended there, with all the struggles evaporating right after high school, but of course they did not. Professors at college refused to grant Jonathan his 504 plan accommodations no matter what Lynn did. Jonathan became tired of banging his head against the wall and stopped college.
Despite the twists and turns in the road, this story does have a happy ending. Today, Jonathan has a wonderful wife, beautiful child, and is well respected in his community. Lynn and William went on to endow a foundation for students with learning disabilities, so that the path would be different for other families in the future. They told their story for this article because they know other families are fighting the same fight.
The good news is that this story began in the early 80s, and times have changed. Though parents today still struggle to get their kids the help they need, more and more people understand that having a learning disability is not the same as being stupid or lazy. Many independent schools (like Indian Creek in Maryland) now recognize that they can support kids with LD, and some are now providing special education services. There are whole schools dedicated to meeting the needs of children with different learning needs. Just like the motto of the Council for Exceptional Children says, “Ignorance is the true disability.” So pass this along if you know a family like Lynn and William, or a great kid like Jonathan, who needs to remember that they are not alone, and it does get better.
Dr. Rebecca Resnik