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.
I didn’t know anything about the testing process. I didn’t even know what the results necessarily meant. I just knew that I needed to have answers even though I wasn’t sure what the questions were at that point.
After testing, it was the psychologist’s opinion that Marielle’s issues were not significant enough to warrant taking her out of the school where she had been happy and was progressing. But the seed had been planted, and it no longer felt comfortable to leave her in regular preschool because, as her parent, [I knew] something was definitely wrong. I didn’t know what it was.
So I went to look at a number of special needs preschools. The one that I ultimately chose needed to do their own testing. So again, I had a three-year-old who had more testing [done] on her than most children have in their entire school lives. She received a psychological evaluation again, another speech and language evaluation, physical therapy, and occupational therapy. What came out of this, and this was a public program, was that in all of the areas they tested, she qualified for [assistance]. [This indicated] she was really struggling across the board and really needed something.
As to how that felt, it was unbelievably sad. Those were the days where I cried frequently about this. Some of the tears were for me but so much was for the struggle I knew that she would face in such a vast unknown at three years old. No one could assure me that with deficits so significant at such an early age, what the future would hold.
[Despite] all the fear and the heartache at that time, I was also hopeful because I understood, as much as I didn’t initially want this, that a special needs preschool would also have a group of children with similar needs and a program that addressed them.
What I didn’t realize (because I was so focused on that particular year and that moment) was the following fall in the special needs preschool. They began to talk about the following year, which for Marielle would have been kindergarten. What I remember being sort of taken with was the realization that it wasn’t just a question of being in a regular versus a special needs preschool for a year. This was a lifelong process. This was not going to go away in a year or two. That was really the beginning of the process for us as a family.
NCLD: Once she was already identified as having a specific learning disability, what types of options were presented to her in school?
Judith Halden: Again, because she was so young, she was just entering what would have been kindergarten. At that time, the options were much fewer than they are today. One option for us was to put her in a public kindergarten program. She could have attended our local public school which is only three blocks from our house, but she would have been in what was called a self-contained class meaning she would have been with all other children who were identified with some type of issue. It wasn’t even just a learning issue within a three-year age spread.
But for the most part, these children were isolated from their peers, which is not at all the case today. The services that she qualified for (which were many) would have been offered as pull-out programs, meaning that she would have had to leave the classroom to be worked with privately while missing what went on in her class.
I also was concerned that Marielle might need more than what the public school option provided. But at five years old, there were not private schools at that point that would take her. So we opted to put her in a self-contained kindergarten classroom. And the following year, other options opened up and we began to look at those.
NCLD: Thank you Judith for sharing this part of your LD journey with your daughter Marielle, and discussing how to deal with schools and the challenges that you faced navigating this situation. Can you offer us some takeaway messages for how to navigate the evaluation process?
Judith Halden: Keep in mind (not that most parents need to be reminded of this) that your child comes first. I think at times we parents feel like we don’t really want to be the squeaky wheel, but the reality is that sometimes you really need to be.
Make sure not to neglect what you as a parent need for yourself — be it talking to friends, or gathering more information — because it can be a really tough process at times. Keep asking questions. Keep networking with people who have similar issues or children with similar issues. And try to stay positive.
NCLD: Thanks again Judith for sharing all this very personal and very important information with our parent audience.
This transcription was made possible by a grant from the American Legion Child Welfare Foundation.
