The following is a transcription of the podcast, “A Parent's Perspective -- The Parent Role in the LD Evaluation Process.”
NCLD: On behalf of the National Center for Learning Disabilities, it’s my pleasure to introduce Judith Halden, a videographer and parent of a young adult with learning disabilities. My conversation with Judith will focus on the identification and evaluation process and the critical role parents play in this aspect of their child’s journey.
Judy, can you tell us a little bit about your own situation and what you’ve learned about the role of parents in identifying learning disabilities?
Judith Halden: My daughter, Marielle, was diagnosed with a speech and language delay at age two and a half. Because she was my first child, I didn’t really have a frame of reference about child development. And although one is always counseled as a new parent not to compare children, it was hard not to notice that Marielle was behind in terms of language development.
I had a friend who was a speech and language pathologist who offered to set up an appointment at Mount Sinai Hospital in New York with a colleague with whom she trained. Marielle was diagnosed then with a language delay, and speech-and-language therapy was recommended twice a week.
Because Marielle was so young, and because I knew absolutely nothing about the process, I made an appointment with the first speech and language pathologist that was recommended. And, although my daughter wasn’t even three at the time, Louise, the therapist, scheduled her in the early afternoon, after preschool at the time of day when until very recently she had napped. As a result, Marielle was irritable and restless and reluctant to let me leave the room.
But after a number of months of therapy, Louise felt that Marielle’s problems were not developmental. They would not clear up on their own and she suggested looking at special needs preschool.
It was devastating for me to have such a young child with what seemed like a potentially far-reaching set of problems. And I think the worst part then was just feeling so alone. I wondered exactly what was wrong with my daughter and what it would mean for her future.
In what was probably my first active advocacy on behalf of Marielle, I decided to change therapists. I didn’t leave Louise because I didn’t like her diagnosis, although I didn’t like it. I switched to somebody who was more compassionate towards me, as compassionate as she was to Marielle. And while certainly Marielle’s needs came first, I discovered that finding a professional who spoke with me in an understanding and caring matter made difficult news easier to hear. I felt I had an ally.
I think the most important thing for parents to keep in mind is that, regardless of how long your child has been identified, never underestimate the importance of your role because you as the parent know your child best. And although you should listen to the advice and recommendations of professionals, also trust yourself. And if the person you sought help from isn’t helpful, find somebody else.
NCLD: Judith, once you and the school decided that a formal evaluation was needed, how did you feel and what did you expect would happen?
Judith Halden: It actually wasn’t the school’s suggestion because Marielle was still young. Her teachers felt that her problems were developmental and that she would outgrow them. It was the speech and language therapist who felt that she needed further testing and further help.
What precipitated this was that Louise, the language therapist, visited Marielle’s preschool class which was a mixed-age group of three- and four-year-olds. It happened to be around Thanksgiving and the children were making cut-out turkeys and Marielle had difficulty placing the turkey’s eyes where they belonged.
So later in the day when Louise met with Marielle’s teacher and principal at school, she said that [Marielle’s trouble with small motor control] in conjunction with her language issues led her all the more to recommend the special needs preschool.
Both the teacher and principal disagreed [with Louise], feeling that Marielle would catch up. They noted that her receptive language was good and she had friends. But again, Louise did not feel this way. So it was at this point that I decided I couldn’t make the decision. I was being told two different things by two sets of professionals. And I decided to have a psychologist test her.
The two speech and language evaluations that she had already had only targeted her language difficulties, and I needed a more complete picture of her functioning to make what seemed like a monumental decision between a regular preschool or a special needs preschool.