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Parenting a Child with LD or ADHD

do these questions make sense?


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Joined: Nov 03, 2005
Posts: 69138
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Posted Apr 11, 2002 at 4:21:15 PM
Subject: do these questions make sense?

I have a dd 7ys. old, 2nd time through 1st grade. After she was diagosed NVLD we had our IEP meeting (jan 31st) anyway, NVLD was new to me then as was this diagnosis that explained many things about my girl. I have read through the IEP again and feel that it does not cover all the needs my daughter has because all NVLD kids are not the same. In the IEP it just states the 3 areas that NVLD affects, but I do not see the areas in which she will be helped. There are no CAMS for her day, and I am not sure what they should be exactly, but I do know that my dd is not happy about going to school and often times comes home upset(which is displayed in anger/meltdowns)
These are some questions I thought of to ask when I call the team together:

What type of traing can we get for all people that interact w/ her during her day (teacher, music spec., PE instruct., Child devel. spec., spec. ed., recess assitants, pricipal, etc.)
What can we do to help her w/the stress she is facing at school? (this is where I would want the traing to show that she is facing some stress in the school day and they would be aware of it. The school is thinking it is a home problem)
What type of social group could we set up to help her w/ social interactions to build her confidance?
How will behaiors be dlt w/ after training so it will be the most effective for her?

The area I live does not have many resourses and I am not sure how to go about getting them outside the area. I have yet to talk with someone with more knowledge than I have on NVLD in our area. I have spent much time reading, and leaving voice mails for people. I know I am the advocate, but I do not know where to turn when I do not know what to do.
Any help would be wonderful. I am in Oregon--
Thank you , CD

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 12, 2002 3:10:48 PM

This is a question that Karen could probably help you with. Hopefully she will see it and reply to you. Great questions you are asking and I think you have hit a point we would all like to address, how do we get all of the people who come into contact with our child at school informed about our child and others similar to them. Training is definitely lacking.

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 13, 2002 10:36:18 PM

Try re-posting with NVLD in the header.

Mary

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 14, 2002 12:15:43 AM

Oregon Advocay Centre:
http://www.oradvocacy.org/

Child Development School of Oregon:
http://www.cdso.org/

Oregon Office of Special Education Home Page:
http://www.ode.state.or.us/sped/

Good Luck

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 14, 2002 12:06:50 PM

I have had three NVLD girls three years in a row now in my classroom. The best thing I try to do for their stress to be kindly available to them. I think that's why they are put into my classroom. I tend to be warm to children and non-judgemental. I find NVLD children respond just as well to kindness and warmth as do other children. While they still have their moments and their rapid mood swings, like everyone else they need to feel successful and secure and when they do, they can enjoy school.

Sadly your daughter's school, like my teaching colleague next door, to my own classroom, needs educating. My dear colleague has never heard of NVLD and assumes my student has 'chosen' to be over -anxious... That your daughter's school has heard of NVLD is great. That they don't know a presentation of stress in a child goes part and parcel with that is not.

I would keep my ear to the ground about next year's teachers. Find out which one has the reputation of being warm and supportive. Which one can 'think outside the box' and then go and request that teacher of the principal for your daughter.

Such teachers can create a warm sense of community in their classrooms so that the classroom itself becomes a safe and supportive place to learn new social skills for children in it.

Good luck.

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 14, 2002 12:34:11 PM

Hi,

I'm on the Delphi Forum NLD on the Web! Karen Randall replied with a lengthy post re: IEP issues for her son. To find it, go to the forum, and look under the heading "Kids with NLD" and then the message "New to NLD" - it has 45 posts. The last post was April 11, I think. You should be able to get some good information from that thread!

Lil

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 15, 2002 2:36:21 AM

in the "LD in Depth" section of this website, under "Nonverbal LD", that talks about modifications that can be made at school to meet the needs of NLD kids. Link is http://www.ldonline.org/bulletin_boards/pld.html

There may be other articles in that section that would be of use to you. At the very least, you could make copies of the article and distribute it at your IEP meeting, in the hopes of educating them. Of course, it would be best to also talk about some of the points made in the articles, as sometimes school staff just file these things away without reading them.

Mary

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 15, 2002 2:39:04 AM

but you can easily find it if you click on "LD in Depth" in the strip across the top of the bulletin board, then click on "Nonverbal LD".

Mary

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 15, 2002 3:17:16 PM

Eeek! I don't know how I got to be the "NLD expert" here... I'm _JUST_ a mom of one NLD child and another "suspect".<g> Sorry it took me a few days to see this, I was away for the weekend.

As Sarah said, probably the A-1 intervention in the classroom for an NLD child is a kind, supportive, nurturing teacher who will take this problem seriously, and not make light of the child's deficits, or assume they are "behavior problems". Our experience has been that in a GOOD classroom, our kids have done fine with minimal support (although more is needed as they get older) In the hands of a bad classroom teacher, no amount of SPED support was enough to solve the problems, and we had to switch our older son to a new class mid-year.

While I have seen all the arguments against inclusion models, I think for most NLD kids, it probably _is_ the best model, if it's done right. These kids, in general, don't need intensive teaching in academics, they need continual low levels of support in ALL areas. They need someone on the spot to see when they've missed something, help them with organizational issues, help them navigate social misunderstandings, help them get back on track and then back off and let them work. Some teachers do this so naturally that it's hard to even realize they are doing it until the child is put in a class with a teacher who doesn't do it.

I think in the average public school classroom with 20 kids or more, it is unlikely that one adult can do the job and meet the needs of the rest of the class. Our school handles this by having the classroom teacher plus an aide for 1/2 the day, and a SPED teacher for the other half of the day in many inclusion classrooms. This has been enough for my kids, though I know of a number of NLD children who are severely enough impaired that they really need a one-on-one aide to help them through the day, at least at the elementary school level.

Under ideal circumstances, most NLD children should probably also be receiving at least OT and S&L work in pragmatics and social skills. Many would also benefit from adaptive P.E. In actual practice, take anything the school offers in this area, but it probably won't be enough to make a meaningful difference. We use private resources outside the school system to bolster these areas. As the child gets a little older, (3rd grade is not too early) formal keyboard training is really, really important.

If your child qualifies for an IEP (that seems to be the sticking point for many people... finding the right way of getting an NLD child ON an ed plan) it is well within your rights to require that the school provide training for the staff that comes in contact with your child about her disability. Our school system is pretty pro-active, and has held teacher training on NLD and Aspergers (many of their needs are similar) at the upper elementary level. (while my older son was on an IEP from kindergarten, we didn't know about NLD until the beginning of 4th grade) We have found the lower elementary staff to be woefully under-educated on NLD. We also had it specifically written into my son's IEP that staff is REQUIRED to read the materials we have provided on NLD.

Most of what I wrote about my son's IEP probably wouldn't be applicable to a first grade classroom. And since every child is very much an individual, and NLD varies HUGELY in expression, you child's needs may be very different from my son's. But it might give you some ideas for the future.

Karen

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 16, 2002 2:49:20 PM

Thank you all for the feed back!!
Karen, your words are just so easy to read and understand--hope you had a nice weekend!!
I think the hardest part is to not have anything change right away. It is my child and I want it all fixed for her now and I am learning that is does not work that way. I am learning to be patient and to keep on educating myself about NLD.
The other hard part is knowing that my girl is still the same as she was before she was diagnosed--it is only my knowledge that is makeing the meltdowns or struggles and the blessings we see different.
I am planning on calling an IEP meeting before the year is out to get us geared up for what lies ahead next year. she has had the same teacher 2 years in a row and is already asking to stay another ("you know mom, you can stay in 1st grade for 3 years--it is OK!! actual quote from my girl!;))
She does not take the changing well!
It helped to read the messages you showed me about Sue--I am not alone and will keep on paving a path for my child!! and to remember it will not be "all better" over night. Thanks, CD

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Anonymous
Joined Oct 21, 2014
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Posted:Apr 16, 2002 6:26:20 PM

Hi CD,

I remember well my feelings when I first learned about NLD. At first, in the office when the neurpsychologist explained what it was, I felt partially relieved and vindicated... I'd known that there was a problem even though the school said everything was fine. (he just needed to try harder) At the same time I was confused, and I really still didn't understand what it all meant.

I went home and started searching for information on NLD, and what I found was not at all comforting. It was down right scary! The more I read the worse it seemed. How could my bright, sweet, funny child have this horrible disability that, according to the foremost expert, often lead to depression and suicide?

As time went on, and he prospered on a good ed plan, and in the hands of a nurturing supportive teacher, I started to feel a little more hopeful. I saw that with the right interventions he WAS learning and making progress, and with me advocating for him strongly, was also remaining on an even keel emotionally.

I've now reached the point that I believe that his emotional health is the very most important factor, and it is the one I guard above all else. If he is happy and relaxed he learns. If he is stressed and anxious he doesn't; we've seen the cycle several times now. Learning about NLD has given me a better understanding of why things go wrong when they do. When I see signs of his anxiety level increasing, I intervene immediately. Our better understanding of him has made things better at home too.

I think that he has the potential to become a very special and useful member of the adult world, and my aim is to see that he gets there emotionally intact. You are right that you've got a long road ahead of you. But the end goal is well worth it. With you to guide and support her, (and most of all, run interference for her with the school system!) your daughter too will have a chance to grow and reach her potential.

Karen

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