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Post by yocheved on Oct 13, 2013 5:08:13 GMT -5
My daughter has just been diagnosed with NVLD and Fragile X Syndrome. I have also come to realize that I have NVLD myself, and that suddenly my entire childhood makes sense (in a sad sort of way).
I need help getting her teachers to realize that this is a real "thing", and that she is not lazy, stubborn, defiant, or unmotivated. My kid lives to please others, and would do anything for the teacher's approval. She's absolutely miserable in math, has atrocious spelling and handwriting, poor reading comprehension, and very poor social skills.
Going to attend an IEP meeting this week, any advice on how to get things through their thick heads?
Thanks!
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Post by dihicks6 on Oct 13, 2013 6:50:17 GMT -5
Welcome yocheved! You will notice that I moved your post so that it will generate more replies. This board, sped advocacy, is a better spot for it.
Can you tell us a bit more about your situation? I'm guessing the school did a full educational eval and now this meeting is to decide whether or not she's eligible for special ed services?
How old is she and in what grade?
Also, do you have a copy of all the evals they did? If so, if you can post her scores here (including subtests) then we have some great eval interpreters here!
Again, welcome!
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Post by ceratops on Oct 13, 2013 7:42:45 GMT -5
Welcome! This is a very helpful and supportive community (speaking from my experience as a fairly new participant on these boards).
Please do post more information -- you are likely to get some very insightful and thought provoking responses.
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Post by michellea on Oct 13, 2013 8:37:29 GMT -5
Welcome - When you are ready to share more about your situation, we are here to listen and support you! The people in this community have been by my side for the last 10 years. My son and I would not be where we are without them!
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Post by healthy11 on Oct 13, 2013 8:50:48 GMT -5
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Post by bros on Oct 13, 2013 17:31:04 GMT -5
Since there's NVLD and Fragile X, perhaps Multiply Disabled would be a more appropriate category?
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Post by yocheved on Oct 13, 2013 18:10:11 GMT -5
Hi, thanks for all your quick replies!
My daughter is 10yo, in 5th grade. She was tested 3 years ago by the school district, and I just sent in a request that she be reevaluated and have her scores compared to see where she is making progress, if it's enough progress, and where she is still struggling.
Her teacher this year is VERY demanding and inflexible. DD is already been labeled the class "loser" and "weirdo", and sits alone in the lunch room.
When we were in synagogue this Saturday, I found a lovely 9yo for her to play with. I turned my back for a minute, and next thing I knew DD was off playing with the girl's 4yo sister and their friends. She just can't relate to kids her own age.
I'll try to add more detail once I know what's going on with her meeting. In the meantime I'm emailing every scrap of research I can find, sending copies to the principal, assistant principal, SPED coordinator, math tutor, and her classroom teacher. I've also visited her classroom and met with the assistant principal. They're probably sick to death of me by now! At least they can't accuse me of being an uninvolved parent, LOL!
It's times like this I thank G-d that I have an only child. I don't know how parents with multiple children could handle all of this. I'm exhausted!
Thanks for listening. :-)
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Post by dihicks6 on Oct 13, 2013 19:08:44 GMT -5
If she already has an IEP, why wasn't the re-eval done after 3 years as required by law. You shouldn't have to request it. What services does she presently have?
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Post by bros on Oct 13, 2013 20:30:58 GMT -5
If she already has an IEP, why wasn't the re-eval done after 3 years as required by law. You shouldn't have to request it. What services does she presently have? I know with me, my district would just say "Oh, he doesn't need to be re-evaluated, we can just say how he's doing off his grades. That's easier!" |
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Post by healthy11 on Oct 13, 2013 21:11:23 GMT -5
Bros, I have a feeling the district would NOT actually say "that's easier," even though we know that's what they're up to.
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Post by bros on Oct 13, 2013 22:09:39 GMT -5
Bros, I have a feeling the district would NOT actually say "that's easier," even though we know that's what they're up to. That's what they did for me  |
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Post by empeg1 on Oct 13, 2013 22:21:51 GMT -5
Can you tell us more about your child? Fragile X has a range of symptoms. How does it show with your little girl? Is her overall cognitive ability within normal limits? What kind of services does your child receive at school? If your dd has been in special education for 3 years, a triennial review must be done. That means an evaluation done by all members of the IEP team, including the school psychologist. As for eligibility, that is not the biggest issue. The question is whether of not your dd's needs are being met. Finally, who diagnosed your dd with NVLD and Fragile X? You might want to bring in specialists into the school, at least for the IEP meeting. Remember, you can also ask for an Independent Educational Evaluation if the results of the school district assessment seems inadequate.
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Post by shragae on Oct 14, 2013 8:38:51 GMT -5
Welcome to the forum. My son, Shraga, was diagnosed with NLD (NVLD) in the 5th grade by a neuro-psychological exam. The tests identified his strengths and his issues -- defining precisely where he needed help. The schools haven't always paid enough attention to this report but it has been invaluable in helping him. My son's NLD was pinpointed to a right hemispheric brain injury. Brain injury is an IDEA category which mandates an IEP. Still, his district refused to use TBI (traumatic brain injury) to categorize him, instead using "other health impaired." I didn't fight the "label" since what I wanted were the supports my son needed -- and I did get those thanks to his IEP. I suggest that you consider having a neuro-psychological exam performed on your daughter and to use it with the district to seek the necessary accommodations. There are some good online resources (and some good books, too) on the topic of NLD and NLD in school which may be useful as you seek the right help for your daughter. NLD on the WebIs It ADHD or Nonverbal Learning Disorder? |
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Post by keepthefaith on Oct 15, 2013 7:40:51 GMT -5
Hi, I too am new here and I feel your pain; I too have DD who is doing very poorly in some core subjects and I agree 100% - you have come to the right place. I have found that the members here will help you to the highest and most admirable extent possible; be sure to answer their questions as best you can as they look at each member individually and find answers particular to your situation.
Best wishes and I will keep you in my thoughts.
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