Sunday, May 24, 2009

The Kobayashi Maru: Lessons About NVLD from Down Syndrome

This is my favorite Star Trek scene, from The Wrath of Khan where Kirk says, "I don't believe in the no-win scenario." Well neither do I!

As I have mentioned before, my son has a diagnosis of Non-Verbal Learning Disorder. For some unknown reason (though Karen has a theory!) I always posted more about Down syndrome than NVLD (or NLD as some folks say) until recently. (Here is the link to my first post on NVLD)

As the parent of a child with Down syndrome who was diagnosed at birth I had some definite advantages when my son was diagnosed with NVLD in the 4th grade. I had many connections in the local disability community, had expunged any disability prejudice that clouded my thinking, and I knew a lot about development, advocacy and rights. There is lots and lots of data available about Down syndrome and nowadays most of it is positively stated. And there is a well-formed and experienced community of families of people with Down syndrome to guide newbies along.

Parents of children with NVLD diagnoses get NONE of these advantages out of the gate. It is really pretty pitiful.

So, I want to offer a disability primer to ease the learning curve a bit for you. Some of this is mindbending stuff because of the society we live in, but trust me, if you get your head around this stuff you and your child will both be better off!

First about disability in general:

As it says in the DD Act:
Disability is a natural part of the human experience that does not diminish the right of individuals with disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural and educational mainstream of American society.

For more about the natural-ness of disability read here.

Disability means that part of your body works differently. Not better or worse, just differently. Some folks see, hear, get around or learn differently. There is no heirarchy--my near and farsightedness (!), my son's diagnosis of NLD, my daughter's diagnosis of Down syndrome and my friend's Cerebral Palsy are equivalent.

The sooner you come to the decision that disability is FINE, the better off you will be and your child will benefit from your belief in them--doubt is poisonous and they will get plenty of that from others. Too much fighting the disability gives the strong message to the child that they are not ok... and if you exhibit pity or unacceptance for other disabilities your kid will make the jump that disability (and they themselves) are bad. It will help all of you to get past this!!!

Now, about experts: Down syndrome is a chromosomal issue and there are literally hundreds of possible symptoms. No one with Down syndrome exhibits all of them--or even most of them! Down syndrome plays out differently in every single individual. As my friend Laura told me when my daughter was born, "When you know one person with Down syndrome, what you know is one person with Down syndrome!"

Because I know tons of families, I know there is a range and expect individual strengths and needs that don't necessarily follow a 'Down syndrome profile.'

When it comes to NVLD the literature implies that folks all present the same way. This is dead wrong. I know several people with the diagnosis and they are all quite different from each other. They sometimes have some commonalities, but they are all unique individuals.

The literature about NVLD is also FAR more negative than anything you read about Down syndrome nowadays. I think this is because it is a newer diagnosis. The literature out of the 1970s about Down syndrome was terribly discouraging as well, but has grown as clinicians, educators, parents, folks with the diagnosis and others have gained experience.

Trust yourself and trust your child FIRST. Be defiant about it! This is a medical diagnosis, it is not a script.

You will build a life that suits your child, you will stand up to naysayers, you will challenge systems that don't work, you will problem-solve and you will create--and your children will learn that from you.

You can do this.

Repeat after me:

You can do this!


Megan said...

I really enjoyed this post. You have brought up many good points. I especially liked that you mentioned that even though people with disabilities may have the same disorder or disability, none of them are the same. I think this is extremely important when working with individuals with disabilities. Certain things may work for some individuals, but we should always be evolving because no two people are a like. Therefore, professionals may need to try new things in order to help others be successful in the future.

thecatsmeow said...

I don't know if you've ever run across the Yahoo! group for those with NLD, but one of their mottoes is something like, "If you've seen one person with NLD, then you've seen one person with NLD!" (I.e., a reflection on the wide variety of ways in which it can manifest itself.) That's part of the reason it's so poorly understood and not currently in the diagnostic manuals (i.e., the DSM and ICD-9-CM).If you're curious I can send you a link to check it out. I've been a member for years and it's always been tremendously helpful to me. (This group is not only for those with NLD; it's also for parents of NLD children, families, educators, etc.) Actually, I may even blog about it (not the group, but NLD) sometime today if I get around to it!

Terri said...

Thank you, Megan and catsmeow! I agree, and ability to evaluate and be creative with strategies is essential for the people that work with anyone with a disability--and anyone at all!

I have not heard about that yahoo group, but would be interested in knowing more. Thanks.