Advocating For My NVLD Son, The Non-Voluntary Force, by Esmee

By February 17, 2017Parents Blogs

“I don’t understand, if this guy is going to die soon anyhow, why would you want to put on make-up before meeting him?”

“If the class is not a democracy, then basically you (the teacher) are the same as Hitler and Mussolini!” (not the most tactful thing to say at an Israeli school)

“What, did she just fart?!” (Imagine this: you are at dinner with friends where an elderly lady while coughing indeed suffers from the escape of some less pleasant gasses, ignored by all but emphasized loudly by your kid.)

“I really REALLY want that gold-fish, let me just roll up my trousers and stroll into the newly build mini-pond in that back-yard!”

All of the above would be funny if it were done by a 6-year-old. All of the above would also be explainable when said by a 6-year-old. But when it concerns a 16-year-old who on one hand can explain the exact working of the molecules in the sun and the stars, has a super-rich vocabulary (and hell, likes to formulate sentences with such big words and terminology it makes him sound like Sheldon from the Big Bang Theory) it clearly is far less appropriate and far less pleasant for the parent.

You may think my son has Asperger Syndrome, since there are quite a few characteristics very similar to the awkwardness someone with Asperger portraits. But it is not. My son has NVLD, aka a Non Verbal Learning Disorder. This disability was first discovered in 1967 by Johnson and Mykelbust and although I’m not sure they were the one to give this name to the disorder, kids with NVLD are extremely verbal! They are thus verbal that there are moments in life, you’d wish your child has a switch-off button as you’ll feel overloaded and overwhelmed with stories, answers (also those you didn’t ask for), explanations (yet again: those you also didn’t ask for) and preferable extra-long discussions on topics that do not require such and should be plain and simple!

As I am sure you can imagine, these are situations that -as a parent- you’d wish you weren’t around, or you basically on the spot volunteer to dig your own grave, jump into the hole so no one will see you and you don’t have to deal with the embarrassment. Because the problem with NVLD is that, on the outside, all seems find with these kids. Indeed, they have a somewhat clumsy physicality, an oddness that indeed one DOES notice (especially peer-group members at school), they are extremely smart and are expected to behave in a certain manner. But that is the sad thing of this disability; it is a hidden disability, a disability in disguise, making it extremely hard for the one suffering from NLVD, the parents and the school-system to acknowledge and handle in the right manner.

As a result, my son and from what I have read many that have NVLD, is considered weird, an outsider and since children can be utterly cruel, encounters bullying. What is a more easy target than a 16 year old, who doesn’t have the social skills, doesn’t pick up the nuances of facial expressions nor the nuances of peer-group conversations, to be told “I hate you” in class or just completely ignored.

I’m not a fool, and as a mother I can sometimes even understand what it’s like NOT to understand how the mind of an NVLD person works. They are wired differently and it’s a drainer, a source of embarrassment and in the least – an agitation. Ever since he was a small child, everything (even the smallest of abilities) took longer for him to learn. Which was so hard to grasp since he had the best grades at the local school and none of his behavior was ever related to NVLD by the professionals I went to. The feeling of desperation, exhaustion, anger as a parent cannot be described. In our case it was very easy for the system, as a widowed single parent, many an issue was absolved to me as a mother: “Let’s keep in mind there’s no male role-model in the family and since he’s an only child, you are probably spoiling him.” “He should just understand the rules, this is how the system works; if you do not set clear boundaries, he will never learn!” But I did set boundaries, and despite the absence of his father and him being an only child, he was not spoiled. On the contrary, the more nonsense I encountered, the stricter I became.

It took me up until his 14th birthday to find out what the underlying issue was and is and always will be: NVLD. As his grades for math (after attending the gifted math course in preliminary school) started declining dramatically at junior high, his hand-writing still remained far from perfect, the gap between his age and required behavior did not close (as a matter of fact, he seemed to become more geeky by the day), I took him for a psychological-didactic assessment, to be told he is not only suffering from ADHD but also (and this has most of the impact on both him and his surroundings): NVLD.

Now NVLD is still not yet well-known within the school-system nor at psychologists. And if you think that after tracing what actually is the source of the problems it’ll be easy to get some form of guide-lines that can help both your child and (not less important – as a matter of fact: most important) you, you are mistaking! Whether you like it or not, YOU will have to be the advocate of your child! And that means, if required, going to the school yet again and explain what NVLD is. It means having to swallow the fact that there will be events where even you, do not understand or even accept the behavior of your kid. And yes, as much as we love our children, this can be seemingly endless at times and it’s draining. It means that not only you will have to come to terms with the fact that your child has a hidden disability that is the laughingstock of his peer-mates, that you will be judged as a parent (or at times feel judged even when it may not even be the case).

But no, there is no other choice than for you as a parent to explain things at length to both your child but also be creative in e.g. his class by taking the guts to stand in front adolescents and explain with some hope of them understanding matters better.

When a person misses out on his right hand, or sits in a wheel-chair, do you judge him for not being able to perform certain tasks? You probably wouldn’t. There are people in the world with hidden disabilities, you may not always know what causes them to act or respond in the peculiar way they do. As a parent of one of those people, my only request is to keep that in mind when dealing with fellow human beings.

Esmee

My name is Esmee, widowed mom of my very smart sweet and sometimes difficult 16 year old son, who (only two years ago) has been diagnosed with NVLD. In so many ways he is the opposite of me and in so many ways we are alike. There are days I totally resent the NVLD and other where the advantages are more dominant. Currently I am (next to doing lots of sports) in the midst of writing a book which I hope to publish some time soon, and no doubt the NVLD will get a prominent place there as well. I would be extremely happy to hear from other parents dealing with NVLD to exchange experiences and assist one another or just feel understood (like our offspring wants to feel).

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