Got the results from neuropsych testing last week

[javafinch]

I agreed with everything she said but also now I'm starting to feel like a bad mom that I didn't do this sooner (my son is almost 13). He did therapies for his first 6 years and I was so 'unimpressed' by the entire process and was just sick of being in the 'system' and wanted to homeschool and let him develop on his own timeline, blah blah.

 

Anyway, she said he has NVLD ... I'm not sure what other labels will be in the report. He has inattention but she said most likely due to NVLD, not a separate ADHD issue. Last night I was googling and seeing that besides ADHD, NVLD is listed as a common LD associated with hydrocephalus (which he has) so wow, that's why I feel like such a terrible parent that I didn't even KNOW that. And when I read about NVLD, it describes him perfectly!

 

I ordered 2 books on Amazon, NLD From the Inside Out: Talking to Parents, Teachers, and Teens about Growing Up with Nonverbal Learning Disabilities Michael Brian Murphy, Gail R. Shapiro and Raising NLD Superstars: What Families with Nonverbal Learning Disabilities Need to Know about Nurturing Confident, Competent Kids Marcia Brown Rubinstien

 

If anyone has other reading recommendations, please share.

 

She recommended OT, ST and taking him to school for special ed help (math). If he could get 1:1 tutoring, that'd be great, but I'm guessing the school doesn't have those kinds of resources. I'm not crazy about the idea of taking him to school for anything. Has anyone else tried that and what were you able to get?

 

She was telling me things like, 'Teach functional math, use digital clocks, keyboarding skills," etc. to help him to function in the world. I liked that she was that way and not, "You need to PUSH him so he can OVERCOME this and get an A in math!" At the same time, I'm not going to just stop trying to get him to master the analog clock - he's pretty close right now, so why stop? She said he would be able to drive when he's older, but just on a delayed timeline (which I already figured before any diagnosis).

 

She said his reading was good, which actually surprised me! I knew he could read lists of words well but he has trouble with reading on a page (reads 'sloppy' like he's skimming, skipping words and sometimes whole lines). I know you all are going to recommend VT. She was not a believer in it. I will keep doing research on that to figure it out for myself. Right now he's just started doing "Sound Reading Solutions - Remedy" and after she said his reading was good I kind of feel like doing all those phenomic awareness exercises aren't what he needs ... but still part of me thinks it could help him so I'm not sure whether we should keep doing the program or stop (not like DS LOVES doing it).

 

So that's that. I feel like this helped confirm to me where his difficulties lie, helped show me that he needs verbal instructions and not visual as much, and the books will help even more to understand him. So that's all good. I'll try not to dwell on the fact that I didn't figure it all out sooner, but it's also not like I was in total denial - I knew he was 'different' and I knew he had hydro and that that could cause LD, so I guess I was at least 1/2 way there.

 

Not sure what to do about ST or OT. Maybe will check into OT once I get the report. Maybe things they would do with him now would be more helpful, not like the EI stuff.

[MomatHWTK]

For math, we make accomodations. I allow Ds to learn what he can of concepts, but I help or allow a calculator because he has trouble with the details. So my advice, is to continue to work on concepts but also allow lots of room for success. Use the digital clock to continue forward with time concepts, while matching up the learning with analog lessons now and then. For instance, if I were doing story problems involving time, I would not throw in analog reading along with it. KWIM?

 

For reading, the book Reading Rescue 1-2-3 helped me a lot. I learned that DS had a legitimate problem with words seeming to jump all over the page. He simply couldn't keep his eye on the word or line. I helped him over come by first blocking off everything except one word at a time (hole cut in an index card) then just underlining the line as he read. I also had him work on his eye tracking skills by doing word searches (which he hated). Some folks have had luck with colored overlays or other methods to help the eye focus.

 

I don't know about your child's specific needs of course, but don't be afraid to try different ideas with him and see which ones work for him. :001_smile:

[javafinch]

Thanks :)

 

The colored overlays sound/look interesting. I have tried and tried to get him to use a straight edge of some sort to keep under the line he's reading and he's VERY stubborn about it. His Kindle seems to help, though, with the font bigger (though I had to raise it just a *bit* without him knowing - he asked if I changed it and I told a white lie! - he's SO stubborn when it comes to certain things that he decides have to be done his way)

[PeterPan]

It seems like you're mentioning eyes quite a bit. It would be logical to have his eyes checked. I'm not sure why you have to "believe" in VT. You go to a developmental optometrist and they demonstrate to you what is happening using their tools that test convergence, focusing, etc. etc . They have a visagraph, which is infrared goggles attached to a computer. The dc reads and the googles track eye movements. They'll be able to quantify his tracking, regressions, line skipping, etc. and compare it to norms. Either he has problems or he doesn't; it's not rocket science. And the therapy itself tends to give dramatic results very quickly (within 1-2 months for many kids), so that you don't have some long-term commitment. Either you're seeing results or you're not. My dd got HUGE changes from VT. You've got clear vision symptoms that would make an exam perfectly reasonable.

 

BTW, font size was the final straw for my dd and why we finally went in. (That and headaches with school work because of the font size and convergence and focusing issues.) My dd was 11 and kept needing large font. I asked a friend (an optometrist BC) whether that was normal and when they outgrew it, and she looked at me really funny. A couple months later we started VT. There's just no reason to leave him struggling with basics like that. If the problems are present, they're generally easily corrected. I would ask around to find a place that has therapists who have experience working with spectrum and NVLD kids.

 

And you're not a bad mom waiting so long. You did the best you could. I've talked with other moms who have gotten burnt with taking littles to EI for therapy and not seeing results and they're not taking their others who need it. It's terrible to say, but the quality of EI therapy really seems to vary. Around here, at least the ST that our local place uses is an utter newbie. So my ds with apraxia, a less common problem that needs a really specialized form of treatment for optimal success, would have been stuck with some newbie who did NOT have that training. And how many other moms with kids in that boat are stuck? So no, it's totally understandable. But now you know. Sounds like you're being really thorough and considering everything you can to help him.