From the article: First Five Things to Do After Your Child Is Diagnosed with NLD
If you're the parent of a child with nonverbal learning disabilities, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here. Tell Your Tips
- Same thing with our daughter. Unfortunately it has taken years longer, lots of calls and e-mails because staff don't read the IEPs or understand what they are reading in the eval. We obtained an outside neuropsych that seemed to be the catalyst for some change. It is funny that the educators don't see NLD as a disability since Sue Thompson, former Wisconsin Governor Tommy Thompson's wife and school teacher, was the biggest advocate for NLD being recognized. She wrote some articles and a book. There is also a website we received from our child's school called www.nldontheweb.org.
- —Guest Chris
getting help with school
- The best thing that I ever did to help my son with all the issues he was having at school was to get the support of an outside educational pysch that I hired to work with us. This person advocates for us at school and knows the system and can therefore get the help my son needs at school. Before getting the help of an outside advocate my son was terribly misunderstood at school and treated very unfairly by the staff. He was labeled as a bad kid with oppositional defiance issues. Once our outside advocate became involved a lot changed for the better and my son can actually thrive. It was well worth the expense. Since the stress from the school situation has lifted my son no longer has anxiety attacks as he had before and we have been able to avoid medication. From my experience most schools do not seem to be ready to recognize NLD as real learning disability. With the help of the advocate they were willing to re-write and comply to his IEP based on her recommendations.
- —Guest guest mom
- The one I am reading right now is wonderful..."Helping a Child with Nonverbal Learning Disorder or Asperger's Disorder". I have notes and post-its all through it as I'm reading. I also love this great book on understanding metaphors (which is a big problem with NVLD) "What did you say? What do you mean?" My 10 yr old and I have read this book many times since he was 5 when we 1st read it together. Our old 1st grade teacher uses it in the classroom for all her kids now. I like it for older kids too. I would also suggest "be different- Adventures of a Free-Range Aspergian" by John Elder Robison. Children with NVLD have many of the same difficulties that children with Asperger's do (and some even consider it the same). My whole family has read this book and my 10 year old is reading it now. Though his diagnosis is NVLD, he is finding a lot of similarities to the real life experiences and benefiting from some of the advice and suggestions. I even catch him with laughing sometimes.
- The most difficult thing are the judgements and misunderstanding by the teachers, neighbours, my own father in-law etc. I found a few friends whose children do not have NLD but OCD and I like to talk with them the most. They are the most helpful. As well, we try to make our sons life as peaceful as possible. We had to lighten up a lot and see the things in life that really matter. It is difficult but the most important thing is his and our happiness. Who cares what people think. I had to let go of trying to make people understand. They are just not going to but as long as we understand it will all be alright.
- —Guest minivan
- Get ready for the ADHD diagnosis and stimulant-trial wars. Stimulants do nothing for NLD yet are widely prescribed for it anyhow. Chances are your school board has no coding for this LD, so good luck getting services. Prepare yourself for skeptics, both of the professional and laymen ilk. And don't ever lose hope.
- —Guest mochridh