On May 2, 2017, at age 27, my son Zak (Zachary) Anthony Jones chose to no longer live with the pressures, NVLD or what we called NLD created for him in this world. A silent disability, where schools, doctors, and most psychiatrists have never even heard of, or even want to investigate or research or even try to understand. We would have to explain it to them, or in fact, beg them to even consider it a possibility or even listen to us! If it was not in their school specs, then it did not exist! Therefore there was never any help for my child here in the state of Ohio! Still even here in December, 2017, at the State Mental institution, where my son got placed on suicide watch. Not one Doctor, therapist or nurse ever heard about this disability, nor would they take the time to learn the easy ways of how to communicate with my son, while in there! We suffered through it alone. We couldn’t even find a psychiatrist, who understood it to even offer him a proper diagnosis! All we got was oh, what’s that, hmmm I’ll have to look it up (which no one ever did!) or oh well, it must be Autism, or he’s just fooling you, he’s just a smart-ass! How can he score 2nd-grade college level in 6th grade but, can’t organize his notebook, he’s just lazy! Time after time, my son was humiliated, due to the lack of understanding or their not wanting to understand!
Zak’s and my story is too long to explain all the frustrations here… But I (we) are here to help, we learned about his disability when he was 13 and there was no major information, or groups, or understanding at that time, only a group called the “Lighthouse Project”, that was it! But we learned to work through it, making our lists, re-mapping his brain, leaving his notebooks in the classroom rather than his locker, etc. I would listen and we together through lots of trial and error, made it work. Until his 20’s as it gets progressively worse with age… And now 14 years later my son is gone! And I do blame the ignorance of society for letting this happen! It was such an easy fix! But no one took the time to listen!
So please if you as a parent even suspects your child has this, take the time to understand it, get the word out that this truly exists, or call or email me and I will assist the best I can as well. No one should have to go through this alone as my son and I did and I am grateful to the NVLD project to start fighting for this long hard battle, even to get it recognized.
Help your child and continue my son’s legacy to change the world, through awareness, understanding, and love! Thank you…
My name is Sharon Jones and my son was Zak (Zachary) Anthony Jones, who had NLD (NVLD) and died because of the lack of understanding about this silent, silent disability!!!Share your own story