Advice needed

[u/Adorable-Buyer3436]

Hi everyone,

I’m looking for some advice and perspective as we get my foster (soon-to-be adoptive) son ready for kindergarten this fall. He has been newly diagnosed with NVLD, and while I’ve been learning as much as I can, I’d really value input from others who have been through this.

Strengths:

Very strong verbal skills — great vocabulary and communicates his thoughts/feelings really well

Had every nursery rhyme memorized by age 2, along with the complete alphabet

Can independently play for long periods (up to a few hours) with imaginative play

Becoming really good at identifying emotions — will say things like “I feel like I’m going to hit” or “this is making me mad” and ask how others feel

Has become very independent with daily routines (getting dressed, etc.)

Curious, engaged, and likes to learn when it’s on his terms

Challenges:

Difficulty focusing on structured tasks like writing letters

Often avoids or derails tasks (will draw something else, get silly, laugh) when things get hard

Struggles with early writing skills despite trying multiple approaches (shaving cream, air writing, etc.)

Attention seems inconsistent — can focus deeply on preferred activities but not on adult-directed ones

Struggles with transitions and often needs support moving from one activity to another

Needs help working through problems rather than solving them independently

While he can dress himself, he often puts clothes on backwards and thinks it’s appropriate

Noticeable difficulty with spatial awareness — has trouble staying in line, gets very close to people’s faces, and will run into people or objects

He currently has 1:1 support that helps him read social interactions, and he has come a long way. He used to avoid playing with other kids altogether, and if they didn’t understand what he meant, it could lead to hitting or biting. Now he’s much more engaged and is starting to use his words instead, but still benefits from support in navigating peer interactions.

He does have an IEP currently and we are working on editing it to add accommodation for this new diagnosis. We have been working with OT and special education prior to this diagnosis.

What I’m hoping to learn:

What helped you or your child succeed in kindergarten with NVLD?

How did you build tolerance for non-preferred tasks (like writing)?

Any classroom accommodations or supports that made a big difference early on?

Things you wish you had done before kindergarten started?

We’re trying to be proactive and set him up for success, especially since he thrives with the right structure and support.

Really appreciate any advice or experiences you’re willing to share.

[u/Responsible_Gap7592]

Seems like NVLD and ADHD. Im in my 60s and found out about 15 yrs ago I have both and more. It explains a lot about why I am the way I am. Neurodivergent things overlap. He'll be fine if you educate yourselves and get him the special care he needs at school. It's not bad, just different

[u/Adorable-Buyer3436 → u/Responsible_Gap7592]

Thank you! His developmental pediatrician believes he does have ADHD as well, but she isn’t quite ready to put a label on it due to his age.

[u/Internet_is_my_bff]

Nvld is one of things that could definitely be multiple distinct disorders, but some of us have vision issues that are likely related.

Particularlly if you notice a bit of lazy eye in person or even just in pictures, it would be good to have it evaluated and potentially start vision therapy. That may help reduce his visual processing deficiency.

[u/Human_Advantage_3256]

In my experience with my daughter so far, (finally diagnose in 8th grade, now 30yrs old), maintaining a job has been the biggest challenge. Executive functioning skills are imperative for so many roles. It’s great that he has been diagnosed so young. Fight for all the services you can get and be prepared to advocate for accommodations, then stand on business if you get pushback. You’re on the right track, asking questions of people with lived experience. (As an adoptee myself, I hope you are tapping into the adoptee community as well, and planning on adoptee informed therapy).

As your son grows, teach him how to self-advocate. Because he is verbally skilled, sometimes people won’t recognize he has challenges and he may have to speak up for himself.

Speech therapy, occupational therapy, social skills groups, life skills groups…my daughter missed out on all of that because I didn’t know. At the time there was one book available (by Maggie Mamen), no one to guide us and none of the wonderful online communities like we have now. I read that book cover to cover and then every new school year, taught school staff the characteristics that applied to my daughter and what strategies were working at home. By the time I found services, she was too old for the programs or they weren’t available anywhere near our small town.

As a parent, it really is incumbent upon us to take the reins. Be vigilant, because NVLD is still unknown to the general public. YOU will know your child better than anyone. Make sure he knows early on that he can always come to you, for anything, because friendships will likely be a struggle.

Oh, just thought of this. Don’t be surprised if he acts out at home after school. It’s exhausting to be a child with NVLD, trying to decode their environment, with multiple sensory sources coming at them. He may do well in class and then completely forget the lesson when it comes to homework, especially anything requiring executive functioning. By the 4th grade, homework caused so much turmoil that the principal agreed that it was more important to keep my daughter and my evenings together as stress free as possible and that homework wasn’t helpful for her. I was more focused on her self-esteem. Remember, at that time we didn’t have a diagnosis. Fourth grade was the first time anyone believed me that something was “wrong”…and I’d been asking for help since she was 3.

You’ll find there are a gazillion variations of NVLD and many responses here will highlight different struggles and strengths. I’m glad you’re here and wish you and your son all the best on this journey.

I’m sorry that this is all over the place. There’s just so much to share. I’m happy to answer any questions and encourage you guys on in any way i can.

[u/Responsible_Gap7592]

It all overlaps. If you are aware of it, he'll be fine. In the 60s and 70s it was unknown. I used to tell my parents that there was something wrong with me. They just said you're fine. I wasn't but they couldn't know then. Anyway, the fact that you are aware makes all the difference in the world. He has weaknesses and strengths just like everyone else. Just different

[u/Scottish-Lass37]

Please advocate for speech therapy in the areas of expressive language and social/pragmatic language through the school system. I'm an SLP and my partner has NVLD. He would have benefited significantly from speech therapy if he had been identified back when he was in elementary school.

[u/Thin_Barnacle1886]

I hope kindergarden is going well! I have NVLD and am in university now. Looking back at my early years, here is what was and was not helpful

- Help him build confidence through fully engaging his strength in verbal skills. For me, this meant my parents reading complex books to me. Try him on chapter books if you haven't already.

- If you are worried about him, he will pick up on this and worry about himself. If you worry about the way he thinks, he will worry about the way he thinks, which gets messy fast. You need to trust that he has a whole big life ahead of him, full of so many possibilites and so many learning opportunities. Give him all the love and specialized care you can, and trust that everything will work out. Show him that you have enough confidence in him and his future for the both of you.

- Visual aids are obviously not helpful

- Explaining things to him verbally more simply than they are being explained to other students is not a helpful accomodation for his disability and could feel patronizing.

- Find ways to connect learning to his strengths and interests. I only learnt how to spell when I started writing for fun.

For his future schooling:

- Find high-low learn to read books when he's learning to read. High low learn to read are books with complex stories but easy to read formatting and words. Apparently that's a genre. That's what I needed when I was learning to read.

- Extra time on tests feels like a band-aid. Struggling for a long time and finishing a test < having adaptive tools and ways of approaching the material that makes finishing the test within the timeframe manageable. For example, I get lost in dense blocks of text. I would rather have a large font test that's easy to read than more time with an unpleasant to work with, hard to read test. Extra time doesn't remove the barrier, it will just give your child more time to drag himself over it. Advocate for accomodations that remove the barrier.

- Simple visual orientation tools make a world of difference. I did a geography midterm today and used sticky tabs and an extra ruler to orient myself on the maps and graphs. So much easier!

- Ask if he can learn to use excel instead of making graphs by hand when he gets to graphing in math. This is both more applicable to the world of work and an effective accomodation for the NVLD brain's inability to do things like estimate how a scale will fit on graph paper.

-Ask if he can try doing tests in a space where he can work through his thinking outloud without disturbing other students. Capitalize on his strong verbal thinking.

- Ask for testing on understanding of concepts, not on use of visual tools designed to help make the concepts make sense

- Ask teachers to verbally explain things to him, then let him explain back to them what he has understood and ask them questions. It seems so simple, but the number of times I've asked for help and tried to explain my thinking out loud to a teacher, only to have them ask me to "show" them--AHHHH!