I am the parent of an amazing 13-year-old boy who loves all things aviation, enjoys being with family, has a great sense of empathy for others, and also has a nonverbal learning disability. As a learning specialist, I’ve focussed my career on helping students reach their potential and I’ve preached for many years that it’s not about the label, the diagnosis doesn’t define the child. Yet here I sit today, desperate for a diagnosis, a label, a formula, a treatment plan… or even just an understanding of the challenges my son faces every day. The truth is, without the diagnosis, the blame is projected onto the child and the focus becomes what they can’t do. A neuropsychological evaluation can certainly shed some light on the why behind the can’t, but without a diagnosis (or at least an accurate one), the child is entitled to very few services and is often labeled as inattentive or behavioral.
The visual image of my son is the complete opposite of the internal visual he wakes up with every morning. His smile, good manners, generally positive demeanor, and engagement with others paint the perfect portrait of a child who is ready to conquer their day. His disability is just as invisible as his anxiety and he sets about each day desperately trying to mask anything that suggests he is different. His internal voice is screaming “What if I can’t find a friend when I get to school?”, “What if my friend isn’t happy to see me?”, “What if my teacher is upset with me?”, “What if I raise my hand in class and get embarrassed?”, “What will I do during recess if all the kids only want to play sports?”… the list goes on and on. These worries probably sound familiar to many neurotypical kids, however, the difference is that my son’s worries are driven by his nonverbal learning disability, whereas most other children’s worries are driven by anxiety in its true form. My son can’t connect the cause and effect of his actions throughout the day, he can’t see the big picture, or engage in a thought process that connects his feelings and actions. There is no rhyme or reason. His brain is being pulled in a hundred different directions trying to read the room, understand what each face is trying to tell him, and decide how he will respond in a way that makes him fit in.
How can I help him? How is it that I haven’t figured that out yet? The guilt and disappointment I feel each day is astounding. This is my field, this is my passion, and this is my son. My sadness turns to anger as I reflect on all of the times I have advocated for him or attempted to explain his struggles. At only 7 years old, I insisted this is not a typical learning disability. I pleaded with professionals to help me find an evaluator who can recognize these inconsistencies. And even when I found a neuropsychologist with supposed experience with NVLD, I was shut down quickly and told, “No, he’s not one of those kids.” What kids are they referring to exactly? Does that make my child better or worse off? Why do we have to compare him to anyone, with implied judgement for all involved? I’ve collaborated with his teachers and therapists, desperately trying to explain to them why traditional approaches don’t register with him and he has great difficulty generalizing strategies to various situations. I was shut down again- sometimes they blamed him for not trying hard enough and sometimes they blamed me for expecting too much. His invisible disability was becoming my broken record that everyone kept muting. I was desperate for someone to see that his learning disability wasn’t confined to his textbooks or his math problems. It spills into his everyday life so that just the same way he doesn’t recognize the big idea of a story, he similarly doesn’t recognize the big idea of the conversation.
His challenges have quickly become his emotions and because he is so misunderstood in the world, he hates himself for not being what he views as “normal”. At the age of 13, peers are less forgiving of miscommunications and the teasing and taunting become more hurtful. Conversations begin to move quickly and it’s easy to fall behind in the midst of it all. It’s easier to retreat and isolate because the only one left to judge yourself is you. This can all lead to negative thoughts and ultimately depression and risk of self-harm and suicidal thoughts.
How do we break the negative cycle if he can’t recognize the cause and effect of his actions? The concept of a trigger is far too abstract for him to grasp which therefore makes it incredibly difficult to recognize emotions across various settings. How do we help him externalize all of the thoughts he has internalized about himself? How do we respectfully work with mental health specialists who repeatedly provide CBT and DBT therapies because “some cases have shown success with autistic children.” He’s not autistic, he’s not dyslexic, he’s not defiant or inattentive… and by the way, he’s not nonverbal. He has a nonverbal learning disability that is highly unrecognized, completely invisible, and greatly misunderstood.
Where do we go from here? How do we encourage others to respect and recognize all of “those” kids?
Laney
I am a mom of three amazing children, who inspire and motivate me to be a better version of myself each and every day. I have a passion for education and work as a Learning Specialist in a variety of settings over the last 20 years. I love giraffes and I’m scared of drains, but that’s a story for another day!
