Friday July 21, 2006

This is one of those blogs where I’m opening myself up to possible misunderstanding but I feel the need to talk out a certain issue in my life. This isn’t directly related to my surgery, but it does involve how I am improving life by figuring stuff out!

As most of you know, I was born with the birth defect Spina Bifida. This carries with it many challenges for my life, both hidden and apparent. One area that I have always kinda known I had but never really understood it was the area of learning disabilities. I grew up attending small private schools in the 80s and 90s so this kind of thing was never discussed with me that much. I don’t think it was really understood until the last 10 years or so and by that time, I was already out of high school. My family and I always knew I had issues with math and science and there was the potential of social problems all because of the birth defect but it was never really given a reason or explanation.

All that changed for me when I attended this year’s Spina Bifida Association of America conference in Atlanta. There was a conference session about this disability…it’s called a non-verbal learning disability. Meaning it doesn’t affect me verbally but there’s no other specific way to describe it.

Here’s what they said at the session in a handout:

What is NLD? Nonverbal learning disorders (NLD) is a neurological syndrome consisting of specific assets and deficits. The assets include early speech and vocabulary development, remarkable rote memory skills, attention to detail, early reading skills development and excellent spelling skills. In addition, these individuals have the verbal ability to express themselves eloquently. Moreover, persons with NLD have strong auditory retention.

Four major categories of deficits and dysfunction also present themselves:
motoric (lack of coordination, severe balance problems, and difficulties with graphomotor skills).
visual-spatial-organizational (lack of image, poor visual recall, faulty spatial perceptions, difficulties with executive functioning and problems with spatial relations).
social (lack of ability to comprehend nonverbal communication, difficulties adjusting to transitions and novel situations, and deficits in social judgment and social interaction).
sensory (sensitivity in any of the sensory modes: visual, auditory, tactile, taste or olfactory)”

I won’t go into a lot of boring details but basically all that they talked about in the session suddenly made so much in life make sense. Here’s a list of how the areas described above can be affected. I’ve experienced nearly every single thing on this list and it’s been very painful to try and figure it out:

“Neuropsychological Profile:
Full range of IQ (This means IQ isn’t really affected)
Visual/spatial deficits are most pronounced: poor appreciation of gestalt, poor appreciation of body in space, sometimes left side inattention/neglect, may have highly developed but ritualized drawing skills that are extremely detail oriented.
Rote linguistic skills are normal (i.e., repetition, naming, fluency, syntactic comprehension), but pragmatic use of language is impaired: weak grasp of inference, little content, disorganized narrative despite good vocabulary and grammar. Rote recall of a story may be good, but the main point is missed. Rhythm, volume, and prosody of speech are often disturbed.
Motor and sensory findings are common: usually poor fine and gross motor coordination, left side worse than right.
Attention is usually reported to be impaired and testing supports this, but the affect is desultory as opposed to distractingly impulsive, as in ADHD. It is as if people with NVLD do not now what to attend to, but once focused, can sustain attention to detail. The distinction between figure and ground is disturbed, resulting in attention errors.
Academics:
Difficulties are often picked up late because decoding and spelling may be quite strong.
Inferential reading comprehension is weak relative to decoding and spelling skills.
Math is often the first academic subject to be viewed as problematic. Spatial and conceptual aspects of mathematics are a problem; math facts may be readily mastered (i.e., a student may know the answer to a simple multiplication problem, but not understand what multiplication is).
Due to spatial and fine motor problems, handwriting is usually poor.
Organization skills are weak, particularly in written work.
Social/Emotional Issues
Peer relations are typically the greatest area of impairment; child may play with much older or younger children rather than with same age peers, where they must manage give and take (I still prefer the company of people at least 10 years older than myself!).
People with NLVD often lack basic social skills: they may stand too close, stare inappropriately or not make eye contact, have marked lack of concern over appearance, be oblivious to others reactions, change topics idiosyncratically.
Children with NLVD are seen as odd children who just dont get it socially. They may do better with adults, where they act dependent and immature, but may not be seen as odd.
They may show poorly modulated affect, not matched to verbal content.
Lack of empathy and social judgment may shield them from fully experiencing the hurt of peer rejection, while the same factors increase the likelihood of being rejected. (I was the opposite on this one, I feel rejection more deeply than most).”

I know this post has been long but it’s been something I’ve needed to get out. Now that I understand the issue a little bit better I’m still feeling a certain void: what to do about it. I refuse to go through life using the disability (like any of my issues) as a crutch or excuse for not doing things correctly. I must, however, find balance in not using it as an excuse but also letting myself realize somethings will never get better for me. The big question for me now is, Ok I have this problem so how do I get around it so that it affects my life as little as possible?