GET YOUR KID DIAGNOSED!!!! (and thoughts on Nonverbal Learning Disorder)
I’m having a conversation with Honey on an older post of mine. We’ve gotten into a discussion since my son, Grant, who has Nonverbal Learning Disorder, bears similarities to her son, who has (like Grant) been in occupational therapy, but who has not been diagnosed with an underlying cause. It had been communicated to her that a diagnosis was unnecessary, since they’d just be treating the symptoms anyways.
<GROWL> Oh, that twerks me.
I’ve actually started several posts on this topic, but either never completed them, or they’ve gotten erased. Every time I’ve previously started to write, it’s because I had a conversation with someone who didn’t want a “label” for their child. Previous to my son’s issues, I considered such dxes simply a label as well, and thought that it likely would cause more harm than good. So, what’s the point, right? Who wants to saddle a child with a learning disorder stigma?
In my experience his dx (now almost 3 years ago) was a TOTAL God-send. We started with a child who suffered from fits, night terrors, extreme clumsiness, anxieties, social problems, developmental delays, you name it… yet who had inexplicably taught himself to read at literally 3 years, 2 months. We now have a child who is well-adjusted and whose intelligence shines through, rather than his oddities. Usually, that is. This still requires upkeep… But, essentially, we wouldn’t ever have gotten from point A to point B w/o a dx. The dx provides a framework for understanding. For me, it brightly illuminated the heart and mind a little boy who was a complete mystery to me. Grant didn’t even understand that I LOVED him (what a heartbreak!), because the way I was communicating was not getting through!
Basically, a diagnosis is a tool. It’s not just a label; it provides understanding. It opens the door of opportunity for books to read, support groups (online or IRL) to join, websites to visit from which to glean information… It illuminates the path marked “The Way On.” It becomes a relationship builder, because you can work with your child in a specific area — you become co-laborers — instead of fighting against them. It provides insight into their inner workings: So many of the issues we were treating as simply behavioral (and disciplining them as such) were a complete outgrowth of his unmanaged, ununderstood learning disorder. We dealt with the disorder, and SO many of the issues he had just evaporated! They just became complete non-issues.
For instance, Grant’s Nonverbal Learning Disorder is characterized by the right and left hemispheres of his brain having difficulty working with each other. So, he had midline problems, fine and gross motor skill problems, communication problems, perceptual problems and sensory integration problems. We discovered, in working with an occupational therapist, that many times, the gigantic fits he threw were a result of him becoming incredibly internally frustrated, both from not understanding what was being communicated to him by the world around him, nor understanding how to communicate the thoughts and feelings he was having. So… when he pitched a fit, I would take him into a back room somewhere, and have him lay on the floor, and roll, roll, roll across the room to the right, then to the left… to the right, then the left. Then, I’d have him stand up and do little excercises (which, at first, were impossible for him!) where he’d raise his left knee and touch it with his right hand, then the reverse. All the excercises were crafted to use both the right and the left hemispheres of the brain. These incredibly simple excercises literally stimulated the pathways between the halves of his brain, and calmed him down! Completely!! Once the the neurons were clicking across the divide, he could literally access his thoughts and communicate, no meltdown required.
Now, without a diagnosis, without help from a developmental pediatrician and an occupational therapist, how would we have known this???? We wouldn’t! We’d likely still be treating such outbursts as simply unacceptable behavior that should respond to discipline and negative reinforcement! The fact is, his “behavior” wasn’t responding to either positive or negative reinforcement, and ALL of us were (sometimes literally) pounding our heads against the wall. It wasn’t until the diagnosis that understanding came.
I used to lament: “I don’t just want to discipline him! Discipline isn’t working! I want to UNDERSTAND him.”
I’d get folks who thought I was being to “soft” on him, and folks who thought the opposite. But the fact was, Grant’s issues weren’t disciplinary; they were in the way his brain functioned. We needed to deal with his brain.
Also, there may be a number of serious long-term risks that an undiagnosed (and/or untreated) child may be at risk for, which you won’t know unless you know what s/he has! With NLD, the rate of *serious* problems like OCD and panic disorders, and the rate of suicide and drug abuse in adolescents and adults is super-high. OCD (and other anxiety disorders) and suicide result as forms of “management” in kids/adults who do not understand the framework of the world around them, who do not understand what is being communicated to them, who know that they’re doing something wrong, but who don’t know what that thing is, and don’t know how to get themselves to an acceptable place. So, they manage themselves by creating a structured framework like OCD, which says to themselves, “I will create an environment for myself in which I feel secure.” Or, they get so internally frustrated that they escape by drug abuse or suicide.
But, a successfully treated kid with NLD will likely grow up to be an intelligent, albeit quirky adult who often does well in the sciences, in languages, in studious professions (like college professor), in experimental fields, and in other places where solitary-but-inventive work is needed. Grant’s dev ped says, “You know that stereotype of the absent-minded professor? The one who is absolutely brilliant, but has some social challenges? That’s a fairly accurate picture of a well-adjusted adult with NLD.”
I’ll take the TREATED option any day!!! Come on, absent-minded professor! Gimme that label! Gimme that diagnosis!
Also, I’ve blogged before about the fact that Grant’s dev ped highly encourages me to homeschool. I was hs’ing already (starting w/ my oldest son, Ethan, who is 2 years older than Grant), and even if he wasn’t in favor of hs’ing, we’d probably still be doing it. But just to have the affirmation from a professional that, yes, I am making the right choice for my son, feels great!
Another mom’s story, from the Amazon discussion on the book Raising NLD Superstars:
My daughter was not diagnosed until she was in the 6th grade. I always sensed there was something different about her, and she would tell us that she wasn’t like other kids and wished she would die. Her pediatricians were not concerned. In 6th grade, she began exhibiting severe signs of anxiety & depression- pulling her hair out and secluding herself in the basement or under a bed, sobbing and not being able to explain why. During this time the teachers and principal at the private school she attended labeled her as slothful and defiant. They recommended severe discipline. Following my heart, I took her to a Clinical Psychologist who did extensive testing. She has genius IQ, but a 42 point spread between her verbal and non-verbal intelligence. For my daughter, manuvering through her world is arduous and often painful. I was so worried, heart-sick, as read and learned about this disorder. The only book available then was Sue Thompson’s. No one seemed to understand or know what would help. She (we)struggled through to complete high school, anxiety and depression would at times cripple her. She just barely completed her work on time to be able to graduate with her class – yet, ironically, she graduated in the top 10% of her class, winning many scholarships!(much to the chagrin of some others) She has gone on to college, adjusted extremely well to living on campus (in a “Wellness Dorm”) has achieved highest honors there, works as a Tutor!! WOW! Has a wonderful boyfriend who took time to learn and understand NVLD. WOW AGAIN!.. “above and beyond what I could ask or think”… I had spent many sleepless nights lying in bed, praying for my precious daughter, knowing she does not have a full connection with the outside world, and wondering if she would ever be able to live independetly from us – would she ever find happiness in this life… She will and she has!! The hardest part of this journey has been the enormous amount of misunderstading and lack of information. You all are so blessed to have all these wonderful books. Always remember that things are usually NOT as they appear with your NVLD child. Always look for the ray of sunshine -these are deeply special people who have important things to contribute to the world. If you ever feel “stuck”, keep your eyes open for an answer that would be the opposite of what would make sense. BE ENCOURAGED!! It’s an important journey for you too. You’re learning together. If you feel sad or frustrated, step back and challenge yourself to look at things differently – there are treasures there.
So… if you have any suspicions about your child, you should get thee hence to a developmental pediatrician. A private doctor is preferable, since staff at a public school can be influenced by politics and funding, and school staff may or may not be qualified to correctly dx (though they’re supposed to be) and/or treat any number of learning disorders. If you have insurance that supports it, and a doctor in your area, PLEASE go that route.
And, if the doctor comes up with a diagnosis, all the better!
(If you’re interested in NLD, a *great* book on the topic is Bridging the Gap: Raising a Kid with Nonverbal Learning Disorder by Rondalyn Varney Whitney.)
(If you want help on finding a diagnosis, and where to go from there, there is a good summary of the how-to’s here. It’s compiled by Terri Mauro, of http://specialchildren.about.com — where she writes a very reliable, informative, succinctly-written column. Plus, she’s linked to my gluten-free sugar cookies recipe several times, which has gotten it nearly 3,000 hits now. I’m not a hit-monger, but it’s nice to have the traffic.)