Monday, December 6, 2010

Moving Forward...Slowly

Today we (Cody and I) had a SIT meeting at school with all of Cody's teachers, academic advisory and the school psychologist. We are all agreed that Cody needs to be tested. Though it was made clear to me that they can not test for NLD specifically. I already knew that. That diagnoses would have to come from the medical field.

Unfortunately, I have found out that insurance companies do not cover this kind of testing past age 6! Of coarse! Doesn't that make sense? Most children would not be tested for learning disabilities until after age six. The tests can range from $1200- $1800. I do have a call to his pediatrician, who is supposed to get a referal for Cody...but I am pretty sure he is going to find out what I already know.

I guess it is just a waiting game at this point. They will start the testing in January, after winter break. Then we will have a meeting to determine if he meets the criteria for special education services. This will be the tricky part!

Other than that things have been better at home between Cody and I. I feel like I am getting to know him all over again and I am seeing him in a different light. It is good.

Wednesday, December 1, 2010

Non-Verbal Learning Disorder

Ever heard of it?

I thought that the first time I had heard it was a couple of weeks ago. But as I was going through past school documents, I realize that it was brought up before Cody entered Kindergarten, by Children's Hospital. How did I miss it or why did I dismiss it?

After thinking about it, I know why. What do you think of when you hear learning disorder? Do you think of a child who is reading at the age of three? How about a child who has the verbal skills of an adult? Or a child that in kindergarten tests in the above average to gifted range? How about a child who passes the Gate testing at the end of second grade. No, I don't think of learning disorder.

But there is another picture of this same child, and it is finally coming into focus. My son has spina bifida with hydrocephalus. He is physically disabled and this is made obvious by the fact that he uses a wheelchair. But if you have a simple conversation with him, it appears that his disability ends there. It seemed to me that his greatest disability was his attitude. But now I see the true disablility. The picture is coming into focus.

The arm flapping in his early years (when he became overly excited). The extreme fits that were blamed on my parenting skills. The constant verbal reminders to complete daily tasks. The seemingly rude or blunt behavior. Total disinterest in coloring or drawing. The inability to relate to his peer group. This was just in the first 5 years. To be honest it didn't raise too many red flags for me.

The report cards that have gotten worse each year since 5th grade, no matter what I grounded him from. The continued frustation and acting out. The inability to rationalize a given situation and to see anothers point of view. He is directionally challenged and unorganized. And yes, he still needs those verbal reminders to complete everyday tasks, like brushing his teeth. In school he has difficulty completing assignments and when he does, he often forgets to turn them in. He is very literal in his thinking so he does not process information in the way it was intended, which leads to misunderstanding. Due to his high verbal skills he is perceived as being lazy and unmotivated. At home he is seen as being defiant and rebellious.

So I heard this term, Non- Verbal Learning Disorder, a couple of weeks ago by someone who is associated with the Spina Bifida community. What is it? I did my research.

Non-verbal Learning Disorder is a neuropsychological disorder that has damaged the white matter on the right hemisphere, affecting the way the brain processes information. Some things are not affected, in particular, speech.
"The syndrome of nonverbal learning disabilities includes a number of specific, potentially debilitating symptoms." These have been grouped into "three major areas: neuropsychological deficits, academic deficits, and social-emotional/adaptational deficits."( Michael Roman, www.nldline.com)
This kind of damage is seen most often in individuals who have experienced some sort of traumatic brain injury, neurotube defect, or hydrocephalus.

As I was reading this (new) information, I hear a voice in the back of my mind, "Mom, I don't understand." How often had he said that to me? How often did I tell him he needed to focus more, stop goofing off, get with the program. Well, let me tell you as a parent if you DON"T listen to your kid often enough, they will stop telling you. Then what? Depression? Thoughts of suicide? Yes, all this and more.

I'm listening now. It's time to move forward. Make some changes and deal with the real disability, NLD.

To my family and ANY one else who would like to learn more about NLD, I found this site very easy to read. http://mydoctor.kaiserpermanente.org/ncal/Images/GEN_NLD%20and%20Spina%20Bifida_tcm63-12048.pdf