reflections related to disability advocacy, family and (needed) cultural change
Wednesday, September 30, 2009
Hope and Non-Verbal Learning Disorder
When you look at the literature that is available about Non-Verbal Learning Disorder you begin to think that HOPE and NVLD are mutually exclusive terms.
This negative portrayal really bothers me. I think it is the result of a number of things, the first being a system that only give grants to researchers who are working on a "PROBLEM." Another is a society that believes in the medical view of disability which tells us that the world is full of 'normal' people and 'not-normal' people and the entire goal of group B (the 'not-normals') is to become like the group A ('normal') people.
To me, this is ridiculous. While the group B folks are hanging out in their petrie dishes being evaluated, no one is noticing that group A is empty...
There are a bazillion people making their way in this world and ALL of them have some sort of difference, some sort of uniqueness and, in truth, some sort of 'abnormality' (most of them have nothing to do with any diagnosis!)
That medical model of disability also teaches that a diagnosis is a rigid, unchanging thing and that the outcomes of diagnoses are solid and immovable.
Well, I am here to tell you: 'Tain't so.
As many of you know, I have three children. Among them is my son who has NVLD and my youngest daughter who has Down syndrome.
Well, here's something you may not know:
People with Down syndrome are living longer, living healthier, and achieving more than the medical profession ever predicted. And Down syndrome is an extra chromosome (21st.) What could be more unchangeable and set-in-stone than an extra chromosome??? Yet lives and skill-sets and other indicators are improving every year...
If this is true about Down syndrome, how could it NOT be true about NVLD??
Well, it is true about NVLD.
More than that, there is no percentage in believing otherwise.
The first believes in definitive skill sets that do not expand. If you have them, you have them. And if you don't, you don't. Much of the world--certainly much of medicine and education--belongs to this school of thought.
The other group believes in the possibility of improvement--for anybody in any area.
To me, this stands to reason. I believe that there are talents and skills that start some people off well in a certain direction, but I also believe that anyone who works on something--pretty near anything--can improve.
Think about it, I am not athletic, but if I started exercising I could become more fit--all areas could improve: cardiovascular, strength, coordination, endurance... If I worked out regularly and well over time, I could even beocome quite fit. (I am exhausted just thinking about it!
Now, it's likely I will not ever be able to play for the Buffalo Bills (no matter how much they need me!) There are indeed some limits that will not change. In fact, there are LOTS of people who don't get to play for the NFL... with and without NVLD.
On the other hand, could I do more or better if I worked at it? Sure.
My brother is a state trouper which is what he always wanted to be. When we were kids he used to practice observation skills. He would look at a new situation, look away quickly and quiz himself on what he saw and then look back to see how he did. (He wanted to practice guessing how much people weighed but my mother would NOT let him go up to people and ask them!) Nowadays it is amazing how much information he takes in when he looks into a room or when someone walks past--trust me, he wasn't born that way!
All this is to say that a diagnosis is a starting place. And all it does is show a pattern of strengths and needs. Your child can use their strengths, and they can work on the areas where they are not strong, if they want to, and get stronger. Just like anyone else.
I have written before that my son's social skills have gotten more fluid over time, as have many of his physical skills.
Other things have not changed much. Some because he doesn't care to work on them (handwriting--why bother when he can type?), others he just hasn't much impact with--yet.
A growth mindset alone can take you far--add in accommodations and resilience and there are tons of approaches for most any situation.
The issues with NVLD for yourself and your child are real and can be frustrating, but there is still room for growth, there are opportunities to succeed and there is room for hope.
Today, the pep talk. Tomorrow some strategy ideas...
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.