NVLD; Rourke; an optimistic outcome

[Laurie4b]

I have my 18 year old's permission to post this. He is now a senior in high school.

 

Back in middle school, I first took him for neuropsych testing. I had decided I was ready to medicate for the ADHD he obviously had and also wanted to lay a paper trail for when he would need SAT accommodations, etc. We were given a provisional diagnosis of NVLD, which she later reversed to ADHD  because his social skills were normal. However, we both knew that by high school, we could have confirmation that it was NVLD since we are told by researchers such as Rourke that social skills can look fine until high school and then the lag as the child doesn't "get" jokes, is naive, etc. begins to manifest. Rourke says that lots of NVLD kids look like ADHD when they are younger.

 

On getting the provisional diagnosis, I had read Rourke. Big mistake. He is so pessimistic. I was devastated, just devastated.

 

So here is some optimism:

 

Ds had a 50 point split between verbal IQ and the next highest score which was perceptual reasoning. (Fortunately, his verbal IQ was very high.)

Ds had been diagnosed with coordination disorder.

Ds's fine motor skills at age 7 were at the very bottom of the chart. The very bottom.

He had ADHD

He had written language disabilities

 

According to Rourke, that IQ split is pretty much all the evidence you need, right? Combined with all the other stuff, definitely adds up to NVLD, right? The neuropsych took a chance at saying she didn't think so and we both knew that that could change come high school. He wasn't yet doing abstract math, it wouldn't necessarily show up in his math. He wasn't yet at the stage where a naive, literalistic view of the world would mean that he wouldn't have friends . He wasn't at the stage where he would need to get around on his own and when an inability to conceptualize spatial problems would lead to him not knowing where he was. He was having trouble with written language akin to kids with NVLD.

 

Fast forward to the present: Ds is 18. He is taking calculus 2 this semester at a public high school/ community college hybrid school. He is getting mostly As and Bs in all his college courses, except a C in foreign language. (He didn't really keep up or study carefully. Plus all the details "got" him with the ADHD.) He is socially adept, makes jokes and understands jokes, has friends, and of my 4 kids, was actually the best at knowing how to get from point A to point B when first learning to drive. He still has challenges: ADHD inteferes with concentration when studying and with executive functioning skills and that is the largest challenge. He gets some accommodations to help with his written language issues in school and on the SAT, ACT, etc.

 

We did a lot of therapies with ds: occupational therapy twice (once at age 7, again at maybe age 10-11), vision therapy (despite my skepticism, it did help in combo with OT with spatial abilities and visual motor coordination, getting them into the above ave/ave range respectively.) We also did Cogmed which helped some with spatial stuff and with working memory to some extent. Anticipating that he might have trouble with higher math, I took a year to consolidate math using Rod and Staff 8, which is very practical. He started Algebra I in 9th grade. That's when I started to relax because he was getting it.

 

I am sharing this because of Rourke's very negativistic writings and yet he's considered the "expert."  A mom I know recently had her child diagnosed NVLD and read Rourke and was an absolute mess. I was able to share my son's  story. Each of our children is an individual. My son certainly has more challenges than his peers, but he is thriving. I was prepared to find a path for him to thrive even if he ended up exhibiting Rourke's predictions, but he didn't.

 

So hang in there mamas. Your child is an individual. Treat any diagnosis like an onion, and peel back any layer that you can.

[Lecka]

Great news :)

[Storygirl]

My son has a diagnosis of NVLD and ADHD (and SPD). He's ten.Thank you for offering this picture of your son's journey. I still have a lot to learn, and it is hard to not get discouraged when I read my son's NP report. Thank you for sharing some hope.

[geodob]

Hi Laurie4B,

 

You highlight a major issue?

When people books or research articles on different Learning Disorders?

The first thing to look for, is the date of the publication.

For example, Rourke published his work back in 1995.

So that Rourkes writings need to be seen from a historical perspective, and what was understood 20 years ago.

Which was an important contribution at the time, along with others like Pam Tanguay.

 

Their writings need to recognized as historical documents, that record an understanding at that time.

But create a problem if they are confused with current understanding.

[kbutton]

I am glad you had such good outcomes. We're dealing with PDD-NOS, and it's nice to see that even with some serious issues, addressing those issues can lead to some great outcomes. Congratulations on your hard work and your son's hard work!

[Laurie4b]

Hi Laurie4B,

 

You highlight a major issue?

When people books or research articles on different Learning Disorders?

The first thing to look for, is the date of the publication.

For example, Rourke published his work back in 1995.

So that Rourkes writings need to be seen from a historical perspective, and what was understood 20 years ago.

Which was an important contribution at the time, along with others like Pam Tanguay.

 

Their writings need to recognized as historical documents, that record an understanding at that time.

But create a problem if they are confused with current understanding.

 

A friend's child was just diagnosed in the last few months. She was pointed to Rourke by that professional, so it's still a current issue.