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.

There is an excellent book by Carol Dweck called Mindset: The New Psychology of Success. In the book Dweck says that there are 2 schools of thought in the world.

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...


thecatsmeow said...

Hi, Terri,
Well, I for one can attest to all of that garbage that comes from the so-called "experts" regarding the potential of those of us with NLD. I've read the literature extensively, and as far as I'm concerned it should be kept far away from the sensitive, concerned eyes of parents and any person who has NLD who doesn't know enough about their situation to not be completely thrown into the pits of despair. There is very little in the way of hope in the literature.

However, now that I'm back in the blogosphere again (thanks for your comment on my recent post having nothing to do with NLD), I will be around to counter that craziness. I'm not suggesting it's easy (no, far from it), but you gave me an idea. There was an article published about me early this year in a tiny, local publication about health care that speaks to my success despite tangling with NLD/AS/whatever label they want to attach to it right this minute, and someday I might get around to posting an excerpt here. It would certainly speak against those people who hear about NLD and think it's a hopeless situation...

Terri said...

Thank you, ms. catsmeow! I will be here as an ally as best I am able. That literature is toxic--countering it with life stories seasoned liberally with hope, strategizing and resilience is so important. The struggles are real... but worthy.

Anonymous said...

Why WOULD anyone bother with handwriting when they can key? I'm with your son on that. And with you, Terri, on the potential for change with work (work, practice, motivation). I can attest to meeting a few with your similar abilities who WANT to play for the Buffalo Bills. That is the other side of the coin for professionals - being realistic for the benefit of parents and patients who truly want not the open-endedness of potential but the curative result near-immediately. Insofaras the literature being negative, well, that is not a pure 'system' either. Your blog helps reverse the direction. Barbara

Terri said...

Thanks Barbara, Handwriting was a bone of contention for a while, but that is over now. And it is true that some folks will want to do things they won't get to do for one reason or another--or they will get to do what they want and won't like it. That isn't a disability issue--thousands of kids try to get into the NFL every year (none of them me!) and very few make it. And lots of people--who do and don't have disabilities--change majors or careers because it doesn't work out as well as they'd thought it would...

The literature about NVLD is ridiculous. The info on Down syndrome is beautiful in comparison... And there is no reason my son's prognosis shouldn't be at least as positive as my daughter's, for Pete's sake!

I do hope putting these things out there makes a difference. Your blog is great for that too!

Anonymous said...

Ridiculous for a completely and single line of prognosis, yes. Sigh. Trite and true, more research needs to be done.

However, I think my - really your - analogy with pro sports holds. How many coaches tell aspiring athletes and their parents - it ain't gonna happen - ?

It IS a disability issue that the exchange of information between professionals and patients/caregivers is not unlike athletes seeking the few and rare prized positions. Negating a large body of published literature requires a tremendous effort, or the acknowledgement that some of it is true, or true for some of the children with the diagnosis.
(Thankfully, not your son.)

Not every person (allowed to be born) with DS has a good prognosis. Individually, their cardiac status and other many possible problems impinge on their ability to learn and grow - including the family and country into which they are born.

This post is excellent for aprising readers of a problem issue. If it fits with your agenda, could you take-apart a recently published article on NVLD here on the blog?

My thanks to you, too. We are a mutual admiration society of two. :)