My son was just diagnosed with Nonverbal Learning Disorder. Tips and advice for coping please!
August 27, 2012 7:36 PM   Subscribe

My 12 year old son was just diagnosed with Nonverbal Learning Disorder. Please help me to not catastrophize.

My 12 year old son, previously diagnosed with ADHD, had a very tough time with the transition last year from elementary to middle school. His grades dropped dramatically, he complained about going to school, became more withdrawn, and started throwing tantrums. We had been taking him to a therapist for these issues but were not making any progress. She suggested a neuropsychological evaluation and we just received the news on Friday that he has Nonverbal Learning Disorder. I am overwhelmed and panicking.

He has a lot of the hallmarks of the disorder - difficulty with executive functioning, transitions, dysgraphia, fine motor issues, anxious, fear of new situations, etc. He was doing okay socially until last year, but after transitioning to middle school he just didn't seem to connect with any new friends. Reading about the disorder online has me in a complete panic. There is a lot of information out there on this and much of the outlook seems bleak to me - social isolation, inability to hold down a job as an adult, depression, suicide risk... the list goes on. My husband and I are requesting an IEP meeting, but the neuropsych written report won't be available for about 4 more weeks. We don't know if the district will require testing by someone of their choice (we paid privately for the eval), and if so, how long this whole process will take. I'm not even sure what type of accomodations to look for since we don't have the recommendations yet, but school starts in a week and given the way it came to a close last year, I am worried about setting him up for failure.

We've explained the results of the exam to our son, but he's 12 and doesn't completely understand what it means. He doesn't like change and his only concern right now is that things don't change at school (even though he struggled so much last year.)

Sorry this is a rambling question, but I guess what I want to know from other parents/people familiar with the disorder is:

How did you cope with the diagnosis?
What impact has it had long-term on you/your child?
How do you stay rational when all of the information presented looks so daunting?

Thanks. We are in Massachusetts.
posted by anonymous to Education (11 answers total) 7 users marked this as a favorite
How do you stay rational when all of the information presented looks so daunting?

He's a kid, there's a collection of symptoms, the two are not one-and-the-same. I can't offer much in the way of practical advice; I'm not a parent. But I can tell you not to worry. He's still the same little guy he was the day before you ever heard of nonverbal learning disorder.

I've got learning disorders. Oh, do I got 'em. And a whole slew of associated problems. And I also got a Ph.D. and a good job and good relationships. He'll be ok. His parents sure sound like they care about him, you know?
posted by samofidelis at 7:46 PM on August 27, 2012 [5 favorites]

My boyfriend was like this as a child. He now has a PhD. And he's wonderful. Write to me if you want more details.
posted by 3491again at 7:47 PM on August 27, 2012

From a MeFite who would prefer to remain anonymous:
I went through this EXACT thing. Every single thing you're saying. My son is now 19 and doing amazingly well. I don't want to say more here, but you can MeMail me if you like and I can say many more things about this.

But first: Do Not Panic.
posted by jessamyn at 7:47 PM on August 27, 2012

He is the same kid as he was a week ago before having a label. A label might help you get access to more or different resources though.

Be calm.
posted by k8t at 7:56 PM on August 27, 2012 [2 favorites]

My daughter is starting college with NLD. It's been a bumpy road but she's an amazing young woman who inspires me with her strength, forthrightness and honesty. Like the anon poster there's a limit to what I'll say here to protect her privacy - and she's a mefite and may post herself. Am willing to help further via mefi mail!

She has a great group of really close friends but social stuff isn't always easy.

We found working with a tutor who helped her with both organization and math throughout high school was very helpful. Remember that NLD is a spectrum - there are people who are very severely impacted and those who are less so. Schools seem to have far less of a clue about how to deal with it than ADHD or Aspergers though. You will need to be your son's advocate but that didn't change with a diagnosis - you always were!
posted by leslies at 8:12 PM on August 27, 2012

Is your son already on an IEP? It sounds like you don't know how your town handles them. Some towns resist IEPs because they are expensive. Other towns really do their best to get kids onto appropriate IEPs as soon as possible, because they realize that creates the best outcomes for everyone, not just the one child in question. A lot may depend on that. Hopefully they will try to do something, even absent the full psyche eval.

At a more personal level, you may want to read Proust and the Squid by Maryanne Wolf. She's a neuroscientist at Tufts with a particular interest in dyslexia and other reading disorders (e.g. dysgraphia). The book might give you some insights into some of the difficulties your son is having on the writing side of things.

Good luck with this! It's great that you're on top of it.
posted by alms at 8:16 PM on August 27, 2012

"My husband and I are requesting an IEP meeting, but the neuropsych written report won't be available for about 4 more weeks. We don't know if the district will require testing by someone of their choice (we paid privately for the eval), and if so, how long this whole process will take. I'm not even sure what type of accomodations to look for since we don't have the recommendations yet, but school starts in a week and given the way it came to a close last year, I am worried about setting him up for failure."

Tomorrow, first thing, call up whoever the contact is for special ed in your district (like the special ed coordinator, if there's not a parent contact listed) and say, "My son has gotten a diagnosis of NLD, we're waiting on the written report from the neuropsych, and I am kind-of freaking out about what happens next for him with school starting soon and thinking about IEPs and everything. HALP."

You will not be the first, or the tenth, or the thousandth parent to call the special ed coordinator freaking out. This is a huge part of what they do, help parents figure out how to navigate the system. Most special ed people are awesome and want to help (if yours are non-awesome, well, memail me, I have suggestions).

Seriously, feel free to e-mail the superintendent. And you can be like, "Hi, I'm a parent, and I am a FREAKING OUT parent, please help, who do I talk to."

The district is there to help you and get your son the services he needs to succeed.

Two other things: first, enormous numbers of students fall COMPLETELY APART when transitioning to middle school. (In fact, I have this theory they should all just be sent to salt mines for three years, because middle school is a nightmare, full stop, plus then they'd be all grateful about getting to sit in an air-conditioned room studying the Constitution.) Second, kids get a lot of diagnoses. Around 1 in 5 has an IEP or a 504 these days. A lot of kids "outgrow" them and/or they learn to function around them, as people have always done. It's just that these days, there are support services to make the years of learning to function with/around them far less miserable. There have ALWAYS been kids with NLD (or whatever you care to diagnose), and the majority of them have gone on to function acceptably as adults. With bumps in the road, of course, but they did okay. These days we just do a much better job of recognizing differences in children that in the past would have led to misery and struggle in school, and helping them learn strategies to cope much earlier. You aren't alone -- not by a long shot! -- and you can get your son the services he needs to become a functioning adult in society! It is a good time to be a parent of a special needs child; there are so many more services available than in the past.
posted by Eyebrows McGee at 8:49 PM on August 27, 2012 [9 favorites]

I homeschooled my ASD sons. They are now 22 and 25. Much of the time, I forget how very impaired my oldest son is. I rely on him a great deal and he is extremely competent. Then we run into some situation he doesn't do well with and I am reminded he isn't "normal" and just can't cope with some things that don't trip up normal people.

I always told him he was a special creature that just needed to either find or create the right niche for himself. He simply isn't a generalist. He has big strengths and big weaknesses. In most cases, the strengths and weaknesses are two sides of the same coin. His unique mentality is poorly suited to some things, very well suited to others.

I never got a formal diagnosis. They went over him with a fine toothed comb in school, starting in kindergarten. They could not figure him out. He was an enigma wrapped up in a mystery concealed by shadows. I began homeschooling due to his health issues which were diagnosed later. Answers did not start to come up until we were homeschooling. Things were revealed little by little. I had time to adjust.

"Ignorance is bliss". I got to know this amazing, quirky burble of joy before the world tried to pathologize him. I spent his life working on "just this one little problem" and then another and another. I kept climbing little hills. It was only upon looking back that I saw it had been a huge mountain. No one told me at the start that was what it would be.

Let me recommend you put your blinders on. They told Thomas Edison's mom he was "addled". She pulled out of school and homeschooled. The experts don't know everything.
posted by Michele in California at 9:29 PM on August 27, 2012 [1 favorite]

Not to worry you but you should be aware that some school systems don't include NLD on the list of learning disabilities they acknowledge and work with. I don't know how they get away with doing so but around here at least one big district tells people to get their kids reclassified as having Aspbergers to qualify for services. Not our district and not what we did.
posted by leslies at 5:38 AM on August 28, 2012

As a father of a boy with autism, I exactly understand where your post is coming from. A quick look through tells me that there are already some useful comments. Still, keep your sanity intact, you can not provide for your son unless you are in good shape. Use all possible resources available. Pick brains of people who you think are a resource or have have access to. I lost my track in the beginning but now I am fine so I am giving best possible therapies for my son. Keep every doctor, therapist working with him and school district in loop. Make notes of what everyone says and go over them when you have some time. Make a list of questions to ask next time you meet them.

Finally, enroll him in all possible clinical trials you are comfortable with. These guys are a great resource which is usually not easily available. (DS enrolls in all non-invasive clinical trials as he is just 4.)

Finally, I can't say this for sure but there is a very good chance that your son has some ability that is extra ordinary. Try to figure that out and find out how best you can use that ability. (DS has extra ordinary memory for his age.)

(P.S. - Everything that is available on the internet is not trustworthy.)
posted by zaxour at 6:35 AM on August 28, 2012

I'm an adult who was diagnosed with mild-moderate ADHD and NLD about a year and a half ago, when I was 28. It made a whole lot of my life suddenly click and make sense. As far as accomidations at school, things that are useful for ADHD will also be the stuff that's useful with NLD. They share a lot of overlap as far as problems with organization and executive functioning. So, if the school doesn't recognize NLD, he'll still have some very useful accomidations.

Does he have any issues with the sensory processing stuff? That bothers me a lot, especially at work with the overhead flourescents and noise of the workfloor. This is a pretty common symptom for those of us with a NLD, and it's associated with ADHD as well. My niece has huge problems with this, and had huge issues being in the lunchroom, to the point of not being able to eat. Something to keep in mind, as it's something he might not notice directly that can have a *huge* impact on mood and performance.

The social impact is huge. Luckily, you're son is in a position to get help learning how to handle his differences much earlier than I did. Think of it as though he's as non-fluent with non verbal communication as you might be with mandarin or finnish. With time, practice, a good method, and good coaches he'll be able to improve his ability to interpret and express himself in these languages. He'll never be a native speaker, but he will probably understand communication in a really unique and valuable way.

My neuropsychologist recommended "Taking Charge of Adult ADHD" by Russel Barkley for me, and noted him as a very good resource. He told me that the suggestions in the book would also be very helpful for my NLD, so you might want to check into Taking Charge of ADHD: The Complete, Authoritative Guide for Parents

If he's dealing with a lot of anxiety, he could probably use therapy with someone experienced with learning disorders and ADHD. Therapists are fantastic at teaching concrete skills for managing anxiety, and those are skills that will benefit him his whole life.

NLD and Aspergers are not the same, but there has been a lot of diagnostic overlap, and they present very similarly in regards to social aspects. And currently, Aspergers has more research behind it, and some good, established methodology in place regarding how to teach social skills. Basically teaching and practicing things that most people just intuitively know. Definitely something to look into.

If you've had therapy yourself, or are familiar with basic cognitive behavioral therapy, you might recognize that you're engaging in fortune telling behavior by thinking up these worst case scenarios. Yes, this disability has been very painful at times, but a huge part of that was not understanding why I felt so disconnected from others, and not understanding my academic problems. And while it was an uphill battle (both ways, through the snow) to really get my social skills in line, they're really fantastic now. In a way I feel like I have an unfair advantage because I feel like I've broken the secret code and really understand social interaction and communication in a really deep way. Plus, I have the unbelievably good memory and verbal aptitude that is common with this disorder. I like to describe it as having limited or slow RAM (working/short term memorty) but I'm equiped with a lightning fast SSD (long term memory).

Try to think of it like a super power. I've read enough comic books, and seen enough superhero movies to know that super powers go hand in hand with some kind of social isolation, or social disconnect. Whether you're an Xman, or Superman, or Spiderman, it's hard to get close to others. You feel desperately alone sometimes, like no one really understands what you go through, or the burden you bear. The trick is to find those few people who you can confide in when it's hard, and who you can count on for support.

Good luck! Your son is going to be awesome and healthy. There's great power in knowing and understanding your weaknesses.
posted by f_panda at 8:17 AM on August 28, 2012 [2 favorites]

« Older Is my apache/php server being hacked?   |   "Best Video Downloader" a gift or harbinger or... Newer »
This thread is closed to new comments.