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...
Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.
One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )
Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)
When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.
I would suggest that they have more tricks to try--they aren't done yet.
The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.
This is the time to be descriptive--supporting this with photos and more can also be helpful.
Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.
Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!
Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.
Over the years I have compared:
*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)
*My daughter's need for both OT and PT with her need for both mittens AND boots.
*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)
*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)
*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...
Something to add to your bag of tricks... let me know how it goes!
There is so much going on in the disability community at the moment... And if you ask, as I mentioned in my last post, Where Does this Lead? The answers are pretty upsetting...
Let's start with this:
Institutions: Now, just a few months ago the world was horrified by the story of Fight Clubs in Texas institutions where staff goaded residents to fight for their entertainment. And Texas, rather than investing in the tough work of dismantling this system and its culture of contempt and violence REWARDED the system by superfunding it...
Where did this lead?
This makes me ill.
Assisted suicide: Bill Peace talks about England's developing stance that although helping kill someone is against the law, in the case of 'severe disability' it may be understandable and not be prosecuted.
Where does this lead?
Over at Not Dead Yet, Stephen Drake has the sad story of a woman in Arizona with a disability who killed herself and was hailed in the newspaper as a hero for doing so... Disgusting--especially since most of her 'struggles' could have been alleviated by a decent public transit system, affordable healthcare and a caring community...
Pitiful, uneccessary and portrayed--sold--as perfectly understandable.
Where does that lead?
Y'know, outside the disability community, many folks see Down syndrome as 'severe.'
And now another disability organization sells out its constituency for the almighty dollar... They get funded while teaching the world that autism is evil.
Where does this lead?
Will it help parents, neighborhoods, schools, communities and employers welcome people with autism into community life? Will it increase understanding and acceptance, increase funding for things like assistive technology and other things that improve lives for people with autism?
Yesterday I heard a mom say that she wouldn't have her young child vaccinated against H1N1 for fear of autism... does she really fear autism more than death?
For several years I have worked with a woman who is both an excellent nurse and really good company. She also has a tendency to mix metaphors and create malapropisms that stick with me for years after I hear them.
One of the first I remember was when she was pretty sure about her opinion of a situation, but not COMPLETELY sure. She told me "not to hold her to it with a fine tooth comb." Now I would never have thought to hold anyone to anything with a fine tooth comb... but I do now. So be careful around me and hair tools.
Another time she was suspicious that someone at work had ulterior motives (which I am sure they did.) She told me to be careful because "there's something wet in the water." Of course, everything in water is wet, but I did not mention this to her--wouldn't dare!
But my favorite by far is her frequent assertion that there's a "message to her madness."
She's distorted a phrase, but it isn't really a bad idea.
When dealing with all the chaos: the kids, the meetings, the policy issues, the opportunities, the barriers, the rest of your life, etc, etc, etc... it is a good idea to have a few guiding principles--some message in the madness.
A consistent (though not rigid) set of beliefs can be very helpful... though they can lead to surprising places.
I went to a conference when Jenn was a baby where the speaker taught us all to ask "Where does this lead?" about the big and little decisions we would face in our daughter's life.
So when we consider doing things for our daughter or showing her how to do them herself we try to ask...
When we choose activities...
When we teach and discipline...
When we make plans...
And when we choose programs...
When we advocate personally and systemically...
This year, for the first time, we have chosen a special education program at a special education school for my daughter rather than having her included in our local school for her program. This was an agonizing decision for me--completely shocking in fact, but in the end it was the question "Where does this lead?" that cleared the path.
As we looked at our local high school and looked at the other possibilities available in our community we came to the reluctant realization that she would actually be more sheltered and less independent at our high school than at the special education school.
Our vision for our daughter's eventual life based on her own interests and choices (and not on any system's offerings, rules or shortcomings) has not changed. Her sense of herself as independent is crucial to this vision so we made our choice accordingly.
(And if that proves wrong we will change it!! Trust me on this.)
She started there this summer. She likes it and it seems to be going well...
The message stays the same, but the path? That twists and turns. It's madness!
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.