My daughter is nine years old. She was born five weeks premature. As a baby and toddler, she did seem to take a bit longer to catch onto things. But I didn’t really think much of it at the time. It wasn’t until Preschool and Kindergarten that I realized that something was going on. My older daughter has ADHD and a math learning disability, so I wondered if Jessica had the same thing. Was it that or an anxiety disorder, or what was it? I knew there was something. But I could never pinpoint what it was.
She went to the occupational therapist at Children’s hospital Cincinnati and had some sessions because she had problems with things requiring fine motor skills. During the second round of therapy appointments, the therapist told me I was making issues up and that my daughter just needed more practice at the things she had issues with. Said she didn’t need therapy. So we stopped going. She struggled daily in school with math, higher-level understanding, and socially. She struggled through k, first, and second grade. Near the end of second grade, I convinced her school to do an IEP. They did, and the results came back that she was below the level on math but normal in reading stuff. So they said she did not meet the criteria for an IEP. It was such a maddening feeling knowing something was going on but never being able to put my finger on the real issue!
The summer between second and third grade, I finally had her tested at Children’s Hospital in their behavioral psychology department. She had to do a full day of testing, and then after a few weeks, I went in alone to talk to the psychologist about the results. I was told that Jessica had what’s called a nonverbal learning disorder. But that it wasn’t officially recognized as a disorder. Luckily, I took that report back to my daughter’s school, and they finally gave her an IEP. The special education teacher that had given her the IEP test in the first place didn’t seem to know much about NVLD. The psychiatrist at children’s did make some recommendations that the school put in the IEP.
I am relieved that I finally know what’s happening with My daughter. However, I wish that more people knew about nonverbal learning disorder. I wish there was more help for her. I wish I didn’t have to tell every teacher she ever has or had what nonverbal learning disorder is and how to help her. I wish they already knew about it, and they already knew how to help these kids who have this non-verbal learning disorder. I worry about my daughter’s future. I worry about her socially at school. I don’t really know how to help this. She still plays alone a lot at recess, and she really won’t talk about it too much with me. I try to get her in activities like dancing, soccer, or girl scouts, and she either doesn’t want to do it, or she’ll do it for a period of time and then be done with it after that not want to do anymore. She’s not really ever made any good friends in any of these activities she does. Although in Girl Scouts and dance, she does or did seem to have fun in the moment. She just doesn’t seem to be able to make any lasting friendships. This is something that I really worry about for her. There’s so much more that needs to be done. There’s so much I don’t know. It’s so overwhelming and lonely.
I am a married mother of 2. My husband works most of the time and is not the most supportive husband, so I am left alone to deal with the children and most of the issues that come with them. I have a rare congenital heart disease and because of that have stage 4 heart failure. I’m currently on the heart transplant list awaiting a new heart. My husband has chronic pain from a rare but stable cancer. My older daughter was born at 30 weeks and had a brain bleed at birth which caused some lasting damage to her brain and learning disabilities. We are a family of rarities and not in the good way. Through all of this I have learned more about myself, who I a, and what I’m made of. I have a strong faith in God and am so thankful for the comfort and peace he gives me daily. I look forward to learning more from this website about NVLD. Thank you so much for all you are doing to help these individuals!