Aquired NVLD

You might find some encouragement in Terri Bellis’ book on auditory processing disorders. The title escapes me at the moment. It is a parent friendly book. In it she discusses how she herself ended up with prosadic deficit—the auditory component of NVLD as a result of a car accident. Her visual processing was so poor she couldn’t even do grocery shopping. She ended up doing therapy and recovering a large amount of her lost function. She did end up changing jobs but has found professional success.

Beth

Thanks Beth,

I found it at amazon and will order it. There is so much out there and I am trying to read it all……….

Fabienne

I wish that there was something that I could offer to ease your pain and probably feelings of helplessness, but I have no experience in that specific area. But I do know that just being “MOM” and going with your gut instinct will never fail you. What a tragic situation you and your daughter are faced with.

We are dealing with self-esteem issues also with my 10 year old son and I will say that his weekly therapy with a private clinical psychologist has had nothing but POSITIVE results.

I offer both you and your daughter my prayers and wish for much success in the future.

If you go to the LD in depth section of this website you will find links to other website dedicated to NVLD. But do not be scared by the somewhat dire predictions made about kids with NVLD. I’ve learned from the parents on this board that all of our children are different, and that we can intervene to help them.

Good luck.

Fabienne,

I worked as a nurse in a rehab hospital with many teenagers who had suffered brain injuries. The prognosis is better than you might think. I believe in some ways it is better than for kids who were born LD. Children who have suffered brain injuries have had the neural connections before, it is not like you are starting from nothing. Much of the recent research on the brain indicates that the brain can form new neural connections.

Therapy can do miracles. I have seen it with my own eyes over and over. Another piece of good news is the fact that your child’s condition is a direct result of a medical injury indicates that therapies should be covered by medical insurance. Those of us who have children labeled with developmental defficits often have difficulty with this.

One therapy I would highly recommend, especially for a child who has difficulty with attention and motor issues is interactive metronome. This can be done by an occupational therapist and if your insurance covers occupational therapy it should be covered. A speech therapist can also do it if your insurance covers that. Take the therapy thing, one therapy at a time.

Please don’t get too hung up on these diagnosis. Sometimes they are correct and sometimes they are just so way off. I have a good friend who was diagnosed with everything under the sun growing up. She really just had a terrible memory deficit and once she learned to cope it she did great in college.

I think the name is “When the brain can’t hear”

K.

Mel Levine’s book, “A Mind at a Time,” is good at offering infomation about learning differences and also what I feel is helpful perspective regarding our children’s challenges.

Hi Frankie,

I am one of those parents with an NLD child who frequents this board. We don’t know why our son is NLD, as he has several risk factors, both before, during and after birth. I can see that your situation would be even harder emotionally, because you knew your child another way before her injury, but we all go though the same regrets, “what ifs” and grieving process when we learn that our child has NLD.

If you are like me, (and it sounds like you are!) you go searching for information, and what you find on the Internet is very, very scary. The good news is that much of that material is 10 years old. We’ve come a long way in learning how to teach and treat NLD kids, and the future is much brighter. I had to smile when I read your comment on how much material there was “out there” on NLD. When we found out about my son’s NLD just two years ago, there was precious little. Some older articles by Byron Rourke that chilled me to the bone, and Sue Thompson’s book, “The Source for Non-verbal Learning Disorders” which was a little more positive, but still scary.

Learning what you need to advocate for your NLD child and get the learning environment she needs is not easy, I won’t lie to you. But the rewards are great. We haven’t found anything that my son hasn’t been able to learn, if he is taught the right way, and teachers are willing to let him progress at HIS speed.

What most parents of NLD kids are finding is that if you can avoid the secondary emotional problems that are a result not of NLD directly, but an inappropriate learning environment, there are few limits to what our kids can accomplish.

Your daughter, I’m sure is a wonderful little girl, and with your help, she will learn to compensate for her weaknesses and build on her strengths. I think the future is brighter for these kids than it ever has been!

Karen

Very inspiring message, Karen.

I’m interested in the statement about avoiding the secondary emotional problems. That they are not the direct result of NLD but of an inappropriate learning environment. I was wondering if there is some documentation on this from what you’ve read? I would like to have this as back up for my own present situation.

I would also like to know how to avoid the secondary emotional aspect to LD because my little guy is starting to show very significant signs of this too.

As you know, the with the older one, we did not catch this in time and he is in therapy. Any suggestions on the direction I should go with the little one (7 years old)?

Hi - I agree 100% with Karen’s post. There is so much more good useful info now than 5 years ago when our daughter was diagnosed. One of the most important things I learned (from the first neuropsychologist, I think) which I have repeated to myself many times: Diagnosis does not equal prognosis. The prognosis for our kids is more than decent, given what we know about how much difference interventions can make.

Yes it is a very hard row to hoe — no question about that. My daughter has benefitted from speech, OT, social skills, tutors etc. etc. And meds for ADD and anxiety. She is doing amazingly well.

Hang in there. And I’m assuming you know about the various NLD sites nldline.com nldontheweb.org

I echo my agreement here as I said many times dx does not have to equal the prognosis. My PDD-NOS and my ADD-inattentive with CAPD and dyslexia are more examples of how what is said by experts does not have to be so. Good luck to you and your daughter.

Byron Rourke is pretty clear in his writing (as is Sue Thompson) that much of the depression and anxiety seen in NLD is a secondary problem brought about because their primary problems are not adequately addressed. I think we’re already seeing the results of better educational programing for NLD kids these days.

My older son’s emotional “problems” (anxiety, mostly) can be turned off and on like a switch with an appropriate classroom setting. We work very hard to keep him inclassrooms where the teachers will keep an eye out for signs that stress is building, and will work closely with us, accepting OUR input on stress levels at home, since he often doesn’t show his stress at school in a way that is recognisable to the teachers. I would rather that they err on the side of not pushing him enough than toward pushing him too much.

Our experience is that teachers are either willing to work with us, in which case he has a great year, or they won’t listen and things deteriorate badly as the year goes on. Last year we ended up removing him from a classroom that was a really bad fit. I’d do it sooner the next time after I saw what a huge change there was in him as soon as he changed to the new class.

Karen

Greetings Frankie,

Dr. Daniel Amen, a pioneer in using SPECT imaging to study the brain, has worked with a number of patients who have sustained head injuries. SPECT imaging is often able to show areas of damage that are not seen with CAT scans or MRI studies. It can help to identify the area(s) of the brain that have sustained injury including opposite parts of the brain damaged by the same injury. Oftentimes, medication is needed to help with focus, emotional problems and other difficulties that may arise following a head injury.

I would encourage you to check out his website at brainplace.com.

Blessings, momo

Thank you so much. Can I ask you where you got this information? I am going to bring it to my neurologist to see if he knows him and what he knows about SPECT Imaging. This board has been a Godsend. I felt so alone up until now and today I am coming back up feeling more empowered by everything I am reading ( and there is alot).

Thanks so much

Fabienne

Thank you for your words. I am very scared but I am getting better. This place and this board have helped me so very much in the last three days. I am overwhelmed by the information but also feel less helpless. Our next step is this IEP (not real encouraging from what I am reading) then medication (was hoping not go down that road) but I want her to be happy. I will take all of this information on my flights with me to read. THANK YOU SO MUCH….

Fabienne

I has no clue about these sites. I will look into them tomorrow morning.

Gabby had two great days in school. I have met a few times with her teacher who is new at her school. As long as I keep Gabby’s self esteem up she can make it. Up until now she had been straight A’s with a severe traumatic brain injury. But now she looks at work and gets so frustrated and discouraged and scared. I am trying to explain to her that A’s are not what we are striving for. We just want her to try her best and the rest will take care of itself with ALL of our help.

Thank you all for helping Gabby.

Fabienne

Hi Fabienne,

Re: SPECT imaging

Please go to the website Brainplace.com. The menu is on the lefthand side of the page. Click on “brain trauma” to read more about Dr. Amen’s findings.

Your dd is fortunate to have such a caring and proactive mother as you!

Blessings, momo