Nonverbal Learning Disorder

[DrMuffy]

Hi everyone,
I'm new to this site, and I live in Canada right now, I hope it's OK for me to post here.
My son (age 9) was just diagnosed with NVLD this past week. It explains so much. He may also be gifted but needs to be tested.
We are planning to move back to the UK in the next year or so, so I will likely be posting here a lot more frequently in the future while I try and sort out what needs to be done to get him the help he needs.
We are only at the early stages of the move right now, and I am just learning about the diagnosis, so for now I just wanted to introduce myself.
If anyone has any experience with NVLD, I would be very interested in hearing it!
Thanks.

[IndigoBell]

Hi, and welcome.

I'm not sure, but I think in the UK they don't normally give a dx of NVLD. Is it yet another term for dyspraxia? (or have I got it totally wrong?)

There is a lot to consider when moving here, so post as much as you like.

How much extra support does your DS need / get at school?

[Latteaddict]

I read a couple of books when DS2 was being dx, (he was nonverbal, and his dx is ASD) that I thought were good.....as many children with ASD's also have communication delay, you might find some resources and support around Autism resources/texts? Part of DS2's difficulties also tick boxes for verbal dyspraxia (one resource that has helped there is the Nuffield programme withinhis speech therapy).

The books I read around NVLD were by Pamela B Tanguay (there's the NVLD child at home, and another which I think is called the NV child at school).

[wasuup3000]

My daughter has a dx of NVLD in the UK but this is recognised as a lesser known part of the autistic spectrum. We have been told to expect an ASD dx as she is currently being assessed to see if she meets this criteria as it is a better known and more recognised dx so it will be easier for school to understand her needs instead of thinking about them soley in terms of a specific learning difficulty in non verbal areas.

[DrMuffy]

Thanks everyone!
I did wonder if NVLD was recognised in the UK, since nothing showed up on here when I did a quick search.

I had originally thought he had Aspbergers (mostly because that was a diagnosis I knew of, NVLD I had never heard of) and my understanding is that the main difference between NVLD and AS is that there are less of the ritualistic behaviours with NVLD, and my son doesn't really have any of those.

At the school he has an IEP. In Canada that means Individualized Education Plan, and it is a document that outlines the accommodations and modifications to curriculum that are made for him. Is it the same in England? In the classroom he is evaluated at a grade level two levels below his actual grade level for reading, writing and math. He has someone that will read something to him and scribe his answer due to difficulties in reading and writing. He is expected to do less work than his peers - they may be given 30 math questions, where he would get 10 for example.

The paediatrician that we saw this week is going to recommend to the school that they apply for funding to get my son a laptop that he can use in the class, with voice recognition software and software that will read problems to him. Also that the school bring in an occupational therapist to help with his writing problems, and that he be tested for giftedness using a verbal intelligence test. She thought he would do very well in a gifted class with accommodations.

She also said that I was lucky to get the support of the school since my son doesn't cause any behaviour problems for them, and those kids often get overlooked.

[wasuup3000]

The main difference between Aspergers and NVLD is usually that many people with typical ASD can sometimes be better with visual information whereas with NVLD it is verbal information which is usually a strength.

[DrMuffy]

That's definitely my DS. His verbal language abilities are way above average and his written language and math abilities are well below.

[DrMuffy]

I don't think my DS would meet ASD criteria for a different diagnosis. Does this mean that the school wouldn't help him at all with a NVLD diagnosis?

[wasuup3000]

The criteria for ASD is due to change very soon. The school gives my daughter almost full time shared support with another child who has Aspergers. She has a smaller maths class which school created for her her and a specialist teacher who comes in once a week. With English she is in the top set at school and has an advanced reading age as in reading the actual words but her understanding of pragmatic language and percerption of other peoples opinions and views is below par. The difficulty has been with a NVLD diagnosis is to get the school to understand that side of things. She does have strong interests which were normal when she was younger such as build a bear, barbie and pink but are not as normal now she is older almost 12.

[EllenJane1]

Your Canadian IEP sounds more like a UK statement of SEN than a UK IEP, which tends to be a very basic list of difficulties, targets and strategies to achieve those targets. Have a look on the MN site at the SEN info link here and look at the education section on the tab above the picture. You seem to be getting more support WRT technology than anyone I've heard of in the UK. Keyboards and laptops do get used, I know, and I'm sure voice recognition software in special schools (SS) but someone may know of it being used in mainstream (MS).

I don't know anything about NVLD, sorry.

[wasuup3000]

www.aboutlearningdisabilities.co.uk/nonverbal-learning-disabilities.html

[DrMuffy]

That's encouraging to hear, that they have support in place even if they don't understand what they're dealing with.
Thank you so much for your input!

[wasuup3000]

It has taken a few years to finally get to the root of her problem because of a couple of pretty weak and flawed professionals and at first we didn't understand her difficulties enough either until we researched what the problem could be.

She has found it difficult to attend school for long periods in the past due to lack of understanding at school of her difficulties and still sometimes finds it difficult to attend school now when they occasionally don't understand her needs.

We applied for a statement of educational needs and this went smoothly apart from some wording changes we needed. However the LEA try to take the support away at reviews and we really have to fight to prove she needs it, the school has backed us up so far in agreeing that she does need it.

You will probably need to appy for a statement when you get back to the UK.

[wasuup3000]

*apply

[DrMuffy]

It took a few years here too. I originally went to a doctor about him when he was 4 (I thought AS then) but because my DS wasn't causing any problems at school, the doctor didn't listen to me. Then when he was 5 he moved to a different school and it involved a school bus and this triggered some severe anxiety for DS, I ended up taking him out of school for 2 years. This is the first year back at school. I guess he needed to be in higher years of schooling where the curriculum requirements were more advanced for the school to actually see where the difficulties are. So far the school has been excellent.

Tbh I was quite surprised when the paed said she would recommend the school get a laptop for him, I haven't heard of anyone having a laptop in class for their own personal use either. I'll be interested to see what the school has to say!

While I'm at it I should probably look into the law surrounding homeschooling in the UK, JIC. My only experience of UK homeschooling to date was Corrie, somehow I doubt I got a full picture. :)

[wasuup3000]

It sounds like you have found a good school there!

Laptops are used here or schools have other similar devices that they use. This has been suggested as an future option for my ds who has dyspraxia as he moves up the school.

Theres a few homeschooling sites in the UK if you google home education, education otherwise and muddlepuddle to get you started?

[yanny]

Hi my dd is 11 and newly diagnosed with NVLD. We live in Scotland and nobody (including me) had heard of this before it was mentioned by the speech therapist about a year ago. I had suspected aspergers for a long time and was confused about how similar the two are. My dd also has ritualistic behaviours and 'obsessions' which don't seem to fit with NVLD though. Psych also wants to refer her to the autism team for assessment as is still mentioning aspergers even though she gave me a verbal dx of NVLD a few weeks ago.

[rabbitstew]

Most children in the UK who would fit a NVLD diagnosis get an aspergers diagnosis instead. My ds1 certainly did.

[irrol]

Hi everyone good to see I can share thoughts with others in similar situations. My daughter has been diagnosed a year ago with NVLD, dyslexia, dysgraphia, and dyscalculia. After a long battle I have fought the Local Education Authority and she has just been awarded a statement for secondary school where she starts in September. However, we feel a little abandoned now in how to appropriately deal with the emotions, frustrations and anger displayed at home from mis-reading relationships with friends and also sibling everyday battles! Any suggestions would be fantastic.

[MrsCrayon]

Hi everyone, I just found this forum tonight. I hope it's not really dead, the comments from irrol struck a cord with me. Our son was diagnosed with NLD about 4 years ago. and we have been very fortunate to have him at a very supportive school, we have had some input from CAMS. Unfortunately nothing has touched on the "frustrations and anger displayed at home" I wondered if over the years since this thread was last active has any one had any joy in this regard?

[wasuup2014]

Hi MrsCrayon - I think I read somewhere perhaps in the BMJ that in the UK that NVLD should be classed as a ASD. If you look at info on ASD it does describe, meltdowns/frustrations. It is well know for example that children with ASD can hold how they feel in at school only to explode like a shaken up fizzy drink when home. There is a lot of information out there if you think of NVLD being ASD instead that may help you.

[MrsCrayon]

Thank you I will have a look at that.

[Tigermoth222]

Hi there, I have just joined here but would really value someone to talk to about NvLD which my daughter has ( some aspects of) according to her dx with spld too.
The Pych ed says it is def not Asbergers - Asbergers have NvLD but not the other way around which is how they are similar. My daughter has meltdowns and I am struggling to get it under control. I am a sole parent and many of the books say you need support but I don't have it.
Secondary school has been a night mare and now she is going to have to leave the very academic school she is at to go to a smaller ( more expensive school with a learning support department of worth. I felt that she would be more cosseted in the independent sector and hoped that she would get more help. The chaos is so bad that it gets her in to trouble at school ( not handing in home wrk etc, loosing stuff, it's so stressful and as soon as I try to get her to tidy up she chucks it all around and has a meltdown!

[kasia]

I know this thread is very old now, but if any of the members re still active I'd be really interested as to how you are getting on. My son is 14 and was diagnosed at year 3. Every day is a new challenge & can especially relate to the meltdowns at home!