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.)

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on February 12, 2007, in Homeschooling, Interesting Websites, Introspective Musings, Medical Stuff, Parenting, The Kids. Bookmark the permalink. 20 Comments.

  1. NLD sounds a lot like autism spectrum disorder. The thing about diagnosis too is that a lot of the times that’s the only way you can get funding for treatment. You sound like such a loving Mom your kids are lucky to have you.

  2. Grant’s dev ped considers NLD to be on the autism spectrum, but that’s not a universally-held opinion among medical professionals. NLD isn’t even recognized by the DSM IV as a separate learning disorder… it just gets stuck under “other” learning disorders. The sad thing is, in order to *get* that funding for parents, some docs will dx it as something other than what it is, so they can get insurance coverage. But, that suppresses awareness. Grant’s doc is hopeful that NLD will get the notice it deserves whenever the DSM V comes out.

    And thank you for your kind words about my mothering. 🙂

    DSM IV: http://en.wikipedia.org/wiki/Diagnostic_and_Statistical_Manual_of_Mental_Disorders

  3. WOW I’ve never heard of this. One more possibility to add to the list of possibilities for my son. Our only official diagnosis is Apraxia (verbal/global) and with OT in bursts of one year on, two off (just starting into round 3 now) as well as 4 1/2 years of ongoing speech therapy (private & at school) he’s improved by leaps and bounds. Still, there’s the developmental delay, and (becoming obvious now) social immaturity…
    We’ve been to a great dev. ped. and she said yes, he falls “somewhere on the autism spectrum” but of course we can’t check off enough boxes for him to get a diagnosis. She said at this point “He’s a little delayed, but he’s happy and well adjusted, and he’s receiving all the services you can get him. He’s doing great!” Okay, I’ll take that. I kind of wish we had more to go on, but I’ll take it for now. He IS doing great. I totally agree, a diagnosis is a label BUT it’s a means to services which otherwise would NOT be offered, and that’s the most important thing. We want our kiddos to be able to grow up, move OUT, get married, and live as normal a life as possible, right?

  4. I wonder if Applied Behaviour Analysis would be a useful tool for these children? Here is a link if you are interested in reading up on it. http://www.behavior.org/autism/

    Karen I agree with you. Drs should not misdiagnose what’s the point of getting funding if it won’t be applicable to what your child’s needs are? But on the other hand I’m sure there are parents that need resources for themselves to help them cope. It’s kind of sad really.

  5. Hey – I can’t imagine what that must have been like – and he is so lucky in the mum he got to help him through it. Really touched by that post.

  6. Ah, Perkidawn! We have something in common! (Sort of.) I’ve visited your page before, or maybe it was your old hs’ing one? But, I don’t think I ever commented. Perky, cute, girly women intimidate me. 8) But, obviously, I have a very soft spot for special-needs children and their mothers. Have you read more on NLD? What do you think? And is it your 12yo who has the difficulties you mentioned?

    Mrs Sveinson ~ Welcome, btw, to the Blogosphere. We have some things in common, too (though Marxist leanings are not amongst them!), and I’m looking forward to reading more. Thanks for the link. It’s “funny”, because my youngest son has celiac disease, so we’re already highly familiar with a g.f. diet… and I’ve wondered if a gfcf diet would help my son Grant. Argh. I think the “cf” part would be harder to implement than the “gf”.

    (u)RD ~ Thanks, as always, for the comment. And I can’t imagine what it would be like to have a child in a spica (is that right?) cast! We all can learn from each other, and we can all say, “There but for the grace of God go I.”

  7. Thanks for the welcome.

    Most everyone I know does not appreciate Marx the way I do, so that’s ok. Diversity is what makes the world go round.

    I don’t know a lot about the diet, but I have heard from professionals involved with families that kids with Autism that doing the above diets have dramatically influenced the children.

    This one Dr said this woman (single) mom, was waiting for treatment for her daughter. She literally threw out all of her old food and put herself and her daughter on the diet. Her daughter was totally non-verbal and non comunative in everyway.

    After I think it was three months she was putting her daughter to bed. Her daughter rolled over and said, “I love you Mom” can you imagine the shock and happiness her Mom must of felt. It’s not that the autism was cured but there was a huge break through in her ability to function.

    The reason why I know a bit about this is that I’m training right now as BI (Behavioural Interventionist). I’m working with two sweet boys in the same family that have Autism.

  8. Wow. A moving post, as much about the shape of motherhood as about diagnosis and treatment. Thanks.

  9. I have been following the conversation and think you may want to check out the NLDA Symposium at http://www.nlda.org

  10. I wholeheartedly recommend the GFCF diet!! We put my son on it right before he turned 2 when we suspected he might be on the spectrum. I was really skeptical, but he already ate almost exclusively whole foods. Milk, cheese and yogurt were his favorites. So we decided to test it out. He had only recently started eating much gluten, and I noticed he seemed to have a tummy ache, and it went right through him. I had just told my husband we would be keeping an eye on that. We got rid of both gluten and casein products at once, and that night he slept beautifully! His behaviors improved slowly but surely, and he have never looked back. Sometimes I wonder if the reason he is not diagnosed autistic is from the improvements of the diet and therapy. On his second birthday, someone accidentally gave him just ONE bite of gluten. He had been on the diet for a couple weeks. I didn’t find out until later that day and was horrified that he spent his birhtday party and the day after in a zombee state. He couldn’t wait until everyone left. That was the one time he really seemed autistic. One thing to note about the diet is that some people have created problems by substituting with too many other processed carbohydrates which leads to other problems, especially yeast overgrowth. We make sure our son gets plenty of probiotics, and lots of natural foods, and we still have to watch the yeast growth in his system. For him at least, the gutt connection is real. Since you have a son with celiac, it would be so much easier for your family to try it.

  11. Thank you for your affirming thoughts on NLD. My 15 y.o. who was dx at age 10–rather late in the game–was very excited to read the bit about the college professor because that is exactly what he wants to do! We have been homeschooling him for 2 years because his interests are so specific (philosophy and theology). Our Dev. Ped. told us a few years ago that the best thing to do when we questioned what was right for him was to listen to our gut (and heart).

    A question about the diet–would it be too late to incorporate some changes into his diet? He practically lives on dairy and wheat products (the typical “white, bland” NLD diet) and professes that he could not live without these foods. He has had occ. GI problems in the past.

  12. I’m 28, but I have horrible memories of being in early elementary school due to some sort of learning disorder. I was tested, and was given the following list of symptoms:

    -poor motor skills
    -good vocabulary, but poor reading comprehension
    -possible attention deficit disorder
    -trouble with organizing information
    -trouble with non-verbal social ques

    Anyway, I never ever had a diagnosis, and worse, I think my mother thought all of that stuff was balogna.

    I’m a working adult, but had some difficulties with higher education. I have an A.A, but even now, I struggle with some things that most people take for granted. It takes me longer to process a big idea of certain concepts. I can get lost in my own community if I don’t have a great connection to where I am (spatial disorientation).

    …and sometimes, small inuendos are lost on me. I don’t always see what is implied…what action I need to take based on limited information.

    I WISH I had a diagnosis, but now, I don’t have the medical insurance to afford conseling or ANYTHING that can help me cope with some of the frustrations and self-scrutiny I feel when I am not “quick” to catch on to things. Oh, and it’s EXTREMELY easy for me to miss minor details repeatedly, despite an honest and diligent attempt to be flawless. That sort of thing happens often in the workplace, and it gives me the image of being lazy, or unconcerned.

    If I had a diagnosis, I could afford the help I need to lessen stress over these things. I could find a way to better communicate my deficiencies with co-workers and employers so that I could do my job without as many minor errors. (to clarify, I don’t tend to make major mistakes, which may not seem so bad, but simple things like missing signatures on forms, day after day, can be tedious to my supervisor. I can easily rattle off rules and procedure, but oftentimes neglect to see the deficit of such procedure in my work. My supervisor will explain the procedure to me, which is really lost on me again, because I know it, almost word for word. That’s not my problem.

    On the plus side, for the most part, I can seem fairly bright to many people, which is a double-edged sword. I find people questioning how I can be so “oblivious,” or “neglegent” in certain situations, when, by most accounts, I seem intelligent enough to be ahead of the bell-curve.

    In a way, having had a real diagnosis would ease some of my anxiety. I find myself trying so hard to do extremely well at things, only overwhelming myself with so many tasks (school, work, childcare, transition from the military). I don’t organize very well, and I want to conquer the world, yet I struggle to put things into motion, and so I can appear lazy or even incompetent. I would like not only to find better coping skills for whatever it is that I was tested to have, but I might also like to have an excuse. Psychologically, it feels that, without a proper diagnosis, I’m just naturally stupid.

  13. Devrie ~ It really sounds like you may have Nonverbal Learning Disorder. Have you tried participating in any of the online forums for those with NLD? I really don’t know what steps you could take, as an adult, to get a diagnosis. But, it just seems sad to me that you feel “naturally stupid” when there are so many positive, intelligent traits in people w/ NLD….

  14. Hi
    I can relate to many of the posts, but espeically Devrie’s. I was diagnosed with NLD at 54 after a lifetime of feeling somehow left out/confused/living below my potential and generally depressed and anxious about my life.
    I am a “successful” professional with a Doctorate in my field, but find it hard to hold down a full time job due to insecurities, energy problems and disorganization, especially around paperwork and staying on top of admin stuff. I used to have suicidal thoughts at tiomes when I was younger too and was frequently very depressed in my teens to 30s. St Johns Wort has really helped me with that issue.
    Getting the diagnosis and learning about others stories has helped me a lot and I understand my own life much better now.
    I have two daughters and the older one (8) reminds me a lot of myself when I was younger. We are going to try a gluten free diet for the whole family and see if that helps either of us. She has reguklar tantrums and is a loner at school though a bright and interesting kid.
    Good luck
    Robert

  15. So thankful to have found his post/blog! Our newly-10-yo daughter was just diagnosed with NLD a few weeks ago. She went from being a somewhat immature, quirky 3rd grader on the honor roll to being an anxious, exhausted 4th grader with few friends and mostly Bs and Cs. After pursuing testing with the school and some brain-mapping with a local OT, we now have a diagnosis that fits her to a T, which I am thankful for. That being said, it IS a bit overwhelming and we are now seriously considering homeschooling her next year and possibly for he foreseeable future. I was curious…are there any curriculums that you’d particularly recommemd for a child with NLD? She has an incredible memory and loves to read but seriously struggles with math. Thank you!!!

    • I’ve very successfully used the Sonlight curriculum through high school. My NLD son is now a senior in high school and in his first/only year of public school. He still has challenges, but is thriving. He also scored a 1280 on the SAT and got a full tuition scholarship to Arizona State. (ASU wasn’t his first choice, but he missed some deadlines… I told him there is no shame in a full scholarship to a local state university!) There are still areas of concern, but he has overcome many of the issues with which I thought he would struggle forever. There is hope. ❤

      I would also recommend Teaching Textbooks for math. It isn’t as rigorous as some curricula, but it is very engaging and its wordy, audible teaching and explanation style works wonderfully for NLD kids.

      You can do it, Mama!

      • Thanks for the quick reply! How funny…we homeschooled this child for kindergarten and used Sonlight back then. She LOVED it and brought it up the other day when she mentioned homeschooling again. I will have to look into Teaching Textbooks. I have heard of it but am not very familiar with it. We used Math-U-See in kinder before we knew about her diagnosis. Can you compare or contrast it in any way with Teaching Textbooks? I feel like we are going to be spending a LOT of time working on math and really want to “get it right” for her so to speak.

        • I know a lot of people who use Math-U-See, but I never have, so I can’t speak to compare/contrast it with TT.

          One of the good things about homeschooling, though, is that if a choice you made isn’t working, you can change it up, midstream. 🙂 Do you know anyone using TT? It’s licensed, but they let people use it any number of times, so it might be worthwhile to borrow a set, load it and try it, to see if your daughter likes it.

          One other note about TT: The placement tests (found on the website) can be useful, but they’re just math problems on a page, which is not a good representation of how the curriculum works.

          On danger of this sounding stalkerish, I found you on FB. If you want, I can friend you and you can message me whenever you would like with questions. I’m sorry we’re not local to each other!

        • One other note: My own daughter, who just turned 11, is having challenges and it looks like she might have Asperger Syndrome. (We have started the eval process – at a minimum, she has Social Communication Disorder. We have to do a complete psych eval for a more exact diagnosis. So, on many respects, I’m walking a very similar path with my daughter as you are with yours.)

          • Yes please!! Do friend me on fb!! I fb stalk people all the time! And I will be praying for answers as you pursue a dx for your daughter.

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