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Struggling to accept my kid


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#1 Sweetpea3829

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Posted 19 March 2017 - 10:42 PM

Goodness, I'm not even sure how to title this...but I'm really struggling lately to connect with this kid.  

 

DD11 is such a sweet kid.  She really is.  I love her to pieces.  It seems as though, over the last year, her social skills have tanked, and tanked hard.  

 

She has always had learning disabilities (ADHD inattentive, dyscalculia, motor integration, receptive language), but her social skills were fine.  She never struggled to fit in with her peers, they accepted her just fine, she engaged appropriately, etc.  
 

But then she hit 10 and...I think the rest of her peer group made some big social jumps and she just has not made those.  Neither is she even remotely ready.  

 

She is still struggling with hygiene (hair combing, despite a shorter haircut, wiping her nose on her sleeve, sneezing boogers all over the place).  Sometimes her laughter is off par (louder than it should be, or she'll laugh hilariously at something that's really not as funny as she's laughing, if that makes sense).  Some of her social interactions are immature.  

 

I'm seeing some of her peer group starting to leave her out, snigger behind her back.  I saw a pair of slightly older twins mocking her.  

At home, she is ALWAYS in trouble for something.  She's not "bad".  But she is irresponsible.  Poorly completed chores...constant distraction...a complete and utter lack of common sense.  

 

Seriously...the lack of common sense is driving me nuts.  She took a frozen chicken water from one side of our chicken coop (a side with just a couple of chickens, so they don't drink it very quickly), and gave it to the main flock.  Frozen.  She often forgets to latch the chicken coop doors...and this has caused significant weather issues during snow storms.  

 

Somehow, she has managed to lock herself into the coop more than once.  I mean, the coop doors have eye hook latches...how in the world...I don't even know!!!  

 

We have begun discussing upcoming tween and puberty issues.  I gave her a book and we've gone over things.  She wrote me a note in her journal asking, "So when does the egg hatch?"  I was like, "Huh?"  She thought the ovary would produce an egg like a chicken egg.  

 

At the Y, she'll come out of the shower with the towel wrapped around her mid-section...bottom half and top half completely exposed.  

I swear, I birthed Amelia Bedelia!  

 

And I know that my reaction to her has been less than accepting.  And she's picking up on it.  Which...is awful.  But I'm not really sure what in the world to do.  I am going to see a counselor and we will discuss these things, but I thought I'd run it through here, because I can't be the only one struggling to "like" my difficult child.  Can I?  Please tell me I'm not.  Please tell me how you managed to build up a kiddo who seems to always do the wrong thing.  

 

And if somebody can tell me that kids like this grow up and successfully manage to navigate through the real world without burning down their homes, or walking off with strangers, please tell me.  Because right now, I'm not sure how this child is going to survive on her own.  

 

(Also, I'm SERIOUSLY considering ADHD meds...something I said I really didn't want to do...but I'm not sure I'll have any other choice).  



#2 Targhee

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Posted 19 March 2017 - 11:34 PM

I have 3 with ADHD, my oldest girl is ADHD inattentive with expressive language LD, anxiety, and some motor issues (plus she is an introvert so social stuff is already a struggle). Meds (oldest was 10 when she started) made a very big difference, especially in the realm of social interactions.

I hope you do seriously consider ADHD meds. I am not saying it's THE solution, but I hope all parents give it serious consideration. Think of all the negative interactions she has every day - not because she is bad as you say just has ADHD - and how some of those could be significantly reduced with the benefits of meds. What would that do for her self image and her confidence - so much!

As far as social skills like grooming and being self-aware of things, I wish I could say at 14 it is so much better, but it is still a challenge. It is better, but still a challenge. The thing is, once they hit puberty the differences between someone with ADHD and their neurotypical peers become more pronounced, more obvious both to the peer and to the ADHD child. What your child needs, what all children need but especially ADHD kids who aren't going to get enough from their peers, is love and encouragement. I KNOW it is hard, can be so frustrating, anxiety-provoking, when it seems that no matter how often you teach/tell/show they just don't seem to internalize some things, and to their detriment. But think of her mental and emotional state, losing friendships, feeling "stupid" or like something is "wrong" with her because of the mistakes she makes even when she tries, and put puberty on top of that and she's probably needing to feel accepted and encouraged for her limbic system to loosen up and allow learning and growth.

Sorry, I am beginning to ramble, but I just want to tell you from a few years down the line that what I regret most was being critical (both outwardly and privately in my thoughts). Just love and encourage and help her to feel safe and secure.

And hugs to you too, mama. I think I know the feeling you are describing. I can't yet see the light at the end of the tunnel either, but I think it will be ok. They will probably have to rely on good relationships for help throughout life, and that is all the more reason we need to build their confidence and reduce anxieties now - so they have they can develop those good relationships.
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#3 stephensgirls

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Posted 20 March 2017 - 12:15 AM

:grouphug:  :grouphug:  :grouphug:  I'm not sure I have much wisdom to offer, but I really love that you are seeing a counselor about this. And you have self awareness. That is huge! Honestly, there have been many times when even my NT kids are hard to accept. 

 

My youngest is my most challenging to parent. And I have failed her many times. There have been many times that I have lost my patience with her and I find myself exhausted and spent--sitting next to her--and I just have to admit to her that I'm just as broken as she is. Realizing that really helps me to give grace.

 

:grouphug:

 

eta: I don't tell my daughter she's broken. lol We are Christians, so it's more like I tell her we both need Jesus. Basically, I have learned how to apologize and let her know I mess up, too. 


Edited by stephensgirls, 20 March 2017 - 12:21 AM.

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#4 Sweetpea3829

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Posted 20 March 2017 - 06:21 AM

Thanks for your sentiments folks!  

 

Yes, definitely my NT boys often drive me nuts...especially my oldest (because the kid is so.much.like.me).  But no matter what they do, I still manage to maintain a fondness for them.  

 

DD...the poor thing...I honestly have lost all fondness for her.  And again, that's awful, and I'm ashamed to even admit it, but it's true.  (There is another piece to this...I am adopted, and was adopted at age 5...so I have a history of attachment issues stemming from my first 5 years of life, and those attachment issues are primarily with females...it's something I am working on with the counselor....but my poor kid, in the meantime, has this double whammy of being a difficult child AND she has a mom prone to weak attachments).  

 

She really is a sweet kid....you mention her at our church and ALL the little old ladies...every one of them...will gush about her.  When new families arrive, she beelines right to them to introduce herself and to show the children "the ropes".  

 

So I try and focus on these positives, but they are so few...and then I feel so guilty for only seeing the negative in her, and for being so critical.  

 

I've been trying to encourage her to be more responsible.  She wants to help in the kitchen, but her hygiene is so poor, I really can't.  

 

Anyways, now I'm rambling.  Just...thanks for letting me sound off.  This is so hard, and sometimes I wish she would have the kind of mom that would have embraced her differences, loved her the way she is, and made her feel important and valuable.  Maybe someday I can be that kind of mom, but right now?  And for the past few years?  I've been missing the mark big time.  


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#5 Garga

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Posted 20 March 2017 - 07:02 AM

The reason I finally gave my son meds was because of all the negative interactions he endured day after day. The poor guy was being constantly corrected/redirected all day long. It broke my heart on the day when I had to correct/redirect him yet again and his thin little shoulders slumped over and he hung his head and let out a sigh and held the position for a few moments, looking utterly defeated. And trust me, the standards I have are pretty low. But the things he'd do were so over-the-top and had to be corrected. Like, when the kid is literally trying to climb the curtains, you have to tell him no. When the kid is trying to balance glass plates on his head, you have to tell him no. And so forth. You know how it is.

Meds for him has been the best thing we could have done for him. This isn't always true for everyone and many people have to try a few different types before one works, and sometimes they never do.

My dh and I were against meds until my DH started taking them for his ADHD and it changed things around for my DH. We didn't think it was fair to deny them for my son who clearly needed them.
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#6 sbgrace

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Posted 20 March 2017 - 07:16 AM

:grouphug: Medication has really helped here, even though we still don't have the meds quite right (for us, probably many, it takes a while to figure out what works). But social stuff with peers was my motivator for meds around the same age actually. And medication definitely helps at home so much more than I had expected.

 

I have to work really hard to try to make sure my positive interaction is more than my negative (10 to 1 ideal). It makes a difference. I understand the negative relational spiral you're describing. I had to pull us out of that just last week here...I'm key in that climate as I'm sure you are too. I know it's incredibly difficult when there is so much negative going on.


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#7 Mainer

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Posted 20 March 2017 - 07:55 AM

I'm sorry you're in this tough situation. I have to say, though... I busted out laughing when you said you birthed Amelia Bedelia  :laugh:

 

I can only imagine your frustration. I work with some difficult kids - well, more like sweet, clueless kids - and I dearly love them - BUT after an hour, I'm more than happy to have them move along to their next class. 

 

I think the 10-to-1 positive to negative interaction mentioned above is very important. You could make it a point to compliment her, hug her, high-five her, whatever, a LOT. It will feel very strange at first, but it will get easier. Once you get in the habit of more praise, your brain might even adjust to see more positive things about your DD, even though you "trained" yourself to see them.

 

A teacher I work with made a blank list with checkboxes, and then laminated it. She writes daily (or hourly...) tasks on it, and it helps her students get things done. I thought the kids wouldn't care about a list, but WOO BOY. A laminated list that you can write on with dry-erase? Pink dry-erase, even? Wowie. The kids went nuts! They were so excited to do things just so they could cross them off  :lol:  You could make a list for everything... hang one in the bathroom, hang one in the kitchen, etc. You could involve her in choosing the paper, a cute graphic, going to Staples to get it laminated and pick out markers...

 

Hang in there! I have times when I dislike kids that I otherwise love... and I feel terrible about it. I am fully aware that they are doing their best. Each moment is a clean slate, though, so keep pressing on. It will be OK.


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#8 nature girl

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Posted 20 March 2017 - 08:05 AM

Another pro-meds mama here...They've made all the difference for us, both at home and with peers.

 

There were days I had a really hard time with my DD (combined-type), she was just so all over the place, loud, in your face, a wild child. And I'm the opposite, quiet, an introvert, the type who'd be happy reading at home all day. When it got to be too much for me, we decided to try public school because I honestly felt like I was about to lose it. There was no peace, no quiet, and I adore her but it was just getting to be too much. So I feel your pain, struggling to connect with your daughter, and your guilt in that struggle.  :grouphug:

 

Now the afternoons, when she's home from school are my favorite times, we can sit and cuddle and read together, have actual conversations. She is just a delight. I mean, she was always a delight, she was hysterical, fun and loving, but it was hidden under so much STUFF. Now I truly believe I'm seeing the person she was meant to be, which was hidden under the disorder. The meds are helping the real girl shine through.


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#9 OneStepAtATime

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Posted 20 March 2017 - 08:08 AM

:grouphug:  :grouphug:  :grouphug:

 

I know this is hard.  DH and DS are not on the same page at all.  Every single thing DS does drives DH nuts, including now a hygiene issue.  It is hard on them both.

 

Can you make a list of hygiene issues that are really a problem then set up very structured support systems for her to follow, where you provide lots of positively reinforced consistent scaffolding/feedback?  

 

Try to understand and internalize that she really needs a LOT more support and structure and positive feedback than your NT kiddos.  Her brain just doesn't process things the same way.  It won't be easy but she really, really, really needs LOTS of structure and consistency and positive feedback.  A lot.

 

Think of her as an apprentice and you are the person she is training under.  Pretend this apprentice position and its requirements are very, very challenging...because for her they are.  Maybe even present it to her in that way.  She is an apprentice.  Set up small, incremental goals to achieve and work on them together, consistently, every.single.day.  Make it your job to make eye contact and smile and offer a word of encouragement even when you want to scream and run the other way.  Fake it.  As best you can.  At the end of each week maybe issue a small paper certificate of goals achieved for that week.  Keep those goals achievable.  Start again the next week by reinforcing the goals from the previous week and adding in one more.  

 

Have you read any books on executive function issues?  Smart but Scattered?  ADD Friendly Ways to Organize Your Life?

 

 


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#10 Sweetpea3829

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Posted 20 March 2017 - 08:09 AM

I'm sorry you're in this tough situation. I have to say, though... I busted out laughing when you said you birthed Amelia Bedelia  :laugh:

 

 

 

Just now, the child was vacuuming the floor with our new vacuum.  Using only the hose.  No attachment.  Our home is 3500 sq ft.  

 

I swear...when they wrote Amelia Bedelia, they were prophesying my child.  

 

Seriously though...I am REALLY concerned that this child will not be able to function as an adult.  Some day, I have to teach her how.to.drive.  OMW!!!!!  


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#11 OneStepAtATime

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Posted 20 March 2017 - 08:20 AM

Agreeing with others that yes, meds might help, too.  Medications have changed significantly over the years.  They don't just drug a child.  They frequently help the brain to function more efficiently.

 

I will share a story of a friend of mine.  She is an adult and has ADHD.  She did not know it.  All she knew was that functioning in daily life was hard.  She was always in trouble for something and she never could figure out how to "do better" even though she really, really tried.  She said that from moment to moment her thoughts were always moving in a massive stream of consciousness process where no single thought stayed for very long at all so nothing would stick for very long at all.  It was horrendously difficulet to remember from moment to moment what she needed to take care of.  She thought that was normal.  Through a series of unrelated events she was seeing a psychiatrist.  The psychiatrist finally suggested she might have ADHD.  After quite a bit of testing they started her on a very low dose of medication.  She said it was truly frightening at first.  She was in the shower when the meds kicked in.  Everything slowed down. She was only holding one thought in her head at a time.  She was thinking "I'm scared and I don't understand what is happening to my brain." but that was all she was thinking.  She wasn't also thinking "laundry, butterflies, dinner, pick up the kids, pretty colors, water feels nice, did I wash my hair yet, gotta bathe the dog...".  It felt wrong.  She called her doctor in tears and told her she broke her brain.  The doctor explained that was how most people are able to function.  They can focus on one thing at a time and complete the task even if it is boring.

 

Now?  She says it has changed her life.  She is still her when she takes the medication. She is just more functional.  It didn't change her personality.  It just helped her to be able to function.  She has been able to accomplish so much more and to not feel like a failure all the time.


Edited by OneStepAtATime, 20 March 2017 - 08:21 AM.

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#12 Sweetpea3829

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Posted 20 March 2017 - 08:53 AM

I've been on ADHD meds most of my entire life and never wanted her to have to deal with the side effects, and the frustration of finding a med that works, etc. But for me, my ADHD is combined and it's pretty mild.  I actually do pretty well when I'm not on the meds and am only slightly impulsive.  Hers is just inattentive....she's not really impulsive.  So I'm not even sure if the meds will help much.  

 

Plus, on top of the ADHD, there are the spatial/integration and math issues.  Honestly, the older she gets, the more she appears to me to have NVLD.  

 

I will talk about it with the counselor on Saturday.  My husband is very much against it, but he also willingly defers to my opinion on stuff like this.  If I think it's best, he will go along with it.  

 

Side story, similar OneStep's (but minus the happy ending), I have a friend who's 18 yr old son is CLEARLY ADHD Impulsive.  OMW, the boy is super smart, but he is awful to be around.  Awful.  Think Robin Williams impulsive, but nowhere near as funny or as endearing.  Now that he is 18, and out of his parent's authority, he is making some really really poor choices.  He is the kind of kid who NEEDS meds, just to regulate his impulsivity.  His mom would not entertain the thought of meds, but I really hope, now that he is an adult, he will get medicated.  I think he will be so much happier, and his potential for success will skyrocket.  



#13 nature girl

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Posted 20 March 2017 - 09:18 AM

The one area meds might really help would be with the mindless mistakes she's making, the distraction and lack of common sense, which seems to be the area that's affecting her and your relationship most. It should also help her pick up social cues more easily.

 

But if you suspect NVLD, I'd try to get that diagnosis firmed up first, because obviously stimulants won't help there. Has she had an official evaluation?


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#14 maize

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Posted 20 March 2017 - 09:26 AM

I'll throw in encouragement for giving meds a try. I know that as parents we all worry about the side effects of medication--and rightfully so. The balance for me tips when the side effects of not medicating are profoundly affecting a child's life and functionality. It sounds to me like your dd is at that point.

One of the worst side effects of untreated ADHD is, in my opinion as a former unmedicated ADHD kid, always being in trouble and failing to live up to expectations. That is a special kind of misery that can have profound effects on a person. No kid wants to fail and fail and fail.

Edited by maize, 20 March 2017 - 09:28 AM.

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#15 OneStepAtATime

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Posted 20 March 2017 - 09:27 AM

Meds don't just help with impulsivity or hyperactivity. The right meds can help her stay focused long enough to notice and internalize social cues and societal norms. It sounds like that is a real area of weakness for her.

Has she had evaluations for possible NVLD, etc?

#16 maize

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Posted 20 March 2017 - 09:30 AM

My mom was out here for a couple of weeks recently and helped tutor my kids in math when she was here. We were doing a med trial with my ds11 and there were a couple of days when I forgot to give him meds in the morning. My mom noticed a big difference on those days not only in his ability to focus on his math work but also in his ability to grasp the concepts being taught. He had a much harder time when he had not taken medication.


Edited by maize, 20 March 2017 - 09:53 AM.

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#17 City Mouse

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Posted 20 March 2017 - 09:46 AM

This sounds a lot like my DD who is now 21. She is loved by the over 50 crowd in our very small town, but has no friend in her age range at all.
She has a thing about bugs, and recently tried to kill a spider by spraying it with hairspray. .???

Her roommates at college kept moving out of her dorm room, and she spent several semesters in a room by herself. (Sounds kind of sad, but she was clueless and liked having the room to herself).

Luckily she wears a uniform to work, so I don't have to intervene so often when she wears clothes that are not appropriate for the situation. (Like clashing colors, favorite item that is too young, too small, etc)

She was on meds for ADHD off and on from 4th or 5th grade through high school. I noticed a big difference right away. She started noticing the difference that the meds made once she was in high school. When her current seasonal job ends, she wants to go to the doctor to get back on ADHD meds as she realizes that it does help her social interactions at work.

And, yes, teaching her to drive was a long, difficult process that I prefer to forget.

Edited by City Mouse, 20 March 2017 - 09:57 PM.

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#18 Garga

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Posted 20 March 2017 - 09:47 AM

The one area meds might really help would be with the mindless mistakes she's making, the distraction and lack of common sense, which seems to be the area that's affecting her and your relationship most. It should also help her pick up social cues more easily.
 
But if you suspect NVLD, I'd try to get that diagnosis firmed up first, because obviously stimulants won't help there. Has she had an official evaluation?

  

I'll throw in encouragement for giving meds a try. I know that as parents we all worry about the side effects of medication--and rightfully so. The balance for me tips when the side effects of not medicating are profoundly affecting a child's life and functionality. It sounds to me like your dd is at that point.
One of the worst side effects of untreated ADHD is, in my opinion as a former unmedicated ADHD kid, always being in trouble and failing to live up to expectations. That is a special kind of misery that can have profound effects on a person. No kid wants to fail and fail and fail.

  

Meds don't just help with impulsivity or hyperactivity. The right meds can help her stay focused long enough to notice and internalize social cues and societal norms. It sounds like that is a real area of weakness for her.
Has she had evaluations for possible NVLD, etc?

  

My mom was out here for a couple of days recently and helped tutor my kids in math when she was here. We were doing a med trial with my ds11 and there were a couple of days when I forgot to give him meds in the morning. My mom noticed a big difference in those days not only in his ability to focus on his math work but also in his ability to grasp the concepts being taught. He had a much harder time when he had not taken medication.



Yes to all the above. That's all been our experience, too with both my son and dh.
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#19 Mom28GreatKids

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Posted 20 March 2017 - 03:11 PM

Another pro-meds mama here...They've made all the difference for us, both at home and with peers.

There were days I had a really hard time with my DD (combined-type), she was just so all over the place, loud, in your face, a wild child. And I'm the opposite, quiet, an introvert, the type who'd be happy reading at home all day. When it got to be too much for me, we decided to try public school because I honestly felt like I was about to lose it. There was no peace, no quiet, and I adore her but it was just getting to be too much. So I feel your pain, struggling to connect with your daughter, and your guilt in that struggle. :grouphug:

Now the afternoons, when she's home from school are my favorite times, we can sit and cuddle and read together, have actual conversations. She is just a delight. I mean, she was always a delight, she was hysterical, fun and loving, but it was hidden under so much STUFF. Now I truly believe I'm seeing the person she was meant to be, which was hidden under the disorder. The meds are helping the real girl shine through.

This is us too. Meds have saved our family and my sanity. I literally was looking into counseling. Things can still be challenging, but jeesh, we like our kid again. Good deal.

Edited by Mom28GreatKids, 20 March 2017 - 03:12 PM.


#20 Mom28GreatKids

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Posted 20 March 2017 - 03:15 PM

And might I add again that at least 1 in 4 addicts were UNMEDICATED children with ADHD. With my family history, um. . . we medicated. Because living with my son is like reliving my childhood with my brother. . . a real live, honest to goodness adult with severe ADHD who started to self medicate with alcohol at 14. He has been clean and sober for almost 5 years. Woot woot.

Edited by Mom28GreatKids, 20 March 2017 - 03:16 PM.

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#21 Sweetpea3829

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Posted 20 March 2017 - 06:34 PM

Thanks for all of the encouragement.  I truly do appreciate it.  

 

I will discuss the meds with the counselor on Saturday.  I'm still unsure of which way to go, but I don't see why we can't give it a try and see how she does.  

 

 

As for the NVLD, DD was given a complete neuropsych evaluation a few years ago.  She is due for a renewal, but I decided to hold off until she's 12-13, and then I'll have her assessed again just before she's 18.  This will, hopefully, establish enough of a documented history of her LDs.

 

Anyways, the results of that assessment were dyscalculia, ADHD/Inattentive, visuo-motor spatial integration weaknesses.  Her IQ was somewhat below the average of 100, but it wasn't too far off (it was in the 80s if I remember).    

 

At that IESP meeting where she first qualified for her CSE plan, one of the school psychologists suggested G may have NVLD.  She based this on her interactions with G at the school, and the manner in which G was "Wowed" by the school environment, etc.  I had already done some research on NVLD and, while DD did have SOME of the flags, she also had characteristics that were decidedly NOT NVLD.  So when it came up in her IESP meeting, I pointed out the many ways she was not NVLD and we left it at that.  I mean, this is a kid that could walk onto a playground anywhere and have a new best friend in 5 minutes.  

 

But now, I'm not so sure.  Now that her social skills have appeared to drop off...I think the label may actually fit her better.  (And again, it isn't really so much that SHE's changed...she hasn't.  Her peers have matured, and she hasn't...and they definitely notice a difference).  The thing with NVLD is that it's relatively new, and not well understood...and, as far as I am aware, it's a continuum of potential characteristics.  

 

Whether she is or she isn't, it doesn't make much difference.  

 

Last year, she was re-evaluated as part of the IESP process (the recertification, if you will) and I was shocked to find that her IQ scores had dropped significantly.  Her new IQ score is in the high 60's.  I brought this discrepancy up at her meeting and was assured that the significant change was due to a change in the IQ test, where they are now including a section on spatial awareness.  And as that is one of her biggest weaknesses, obviously there would be a huge impact on her score.  

 

Still though, her IQ being that low was a real jolt.  In one fell swoop, my daughter went from being a low average student who, according to her neuropysch, would probably still be able to go to college, to a student with a borderline IQ.  

 

In any case, maybe what I'll do is push for the Independent Evaluation this year instead of next.  That should shed more light on where she is cognitively, than the assessment done by the school.  

 

 

I did sit her down today and apologized (again).  Our character trait last week was....of course...tolerance.  :momfail:  Luckily, this week it's on forgiveness...so we had a chat and hopefully with the counseling and possibly meds for her, maybe we can save this relationship and actually thrive.  

 

 


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#22 Storygirl

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Posted 20 March 2017 - 10:30 PM

For what it's worth, DS was diagnosed with NVLD at age nine. At the time, I knew nothing about it, and as I read about it, I wondered if the diagnosis was accurate (we suspected autism and already knew of other issues before then, including ADHD). By age 11, I could see it clearly, and by age 12, it is so completely obvious that I wonder that I ever doubted it. That pattern is typical.

 

I would argue that it does matter whether it is NVLD or not. Knowing about DS's NVLD is hugely helpful as we deal with his academic and other issues, because it allows us to dig in and understand better the root problems.

 

When you have your evaluations, be sure to ask for social to be included, if you have not previously. With NVLD, the social issues tend to worsen with age and impact both employability and personal relationships. Getting social skills therapy was at the top of our list of DS's needs, even though he has academic LDs as well.

 

Two other things to consider -- ADHD and NVLD are not mutually exclusive. Treating DS's ADHD makes a huge difference for him and our family. Secondly, many believe that NVLD should be on the autism spectrum, and some practitioners would diagnose ASD in addition to or instead of NVLD, since NVLD is not in the DSM. Getting an autism diagnosis instead of an NVLD diagnosis could result in additional services and/or funding for therapy, so it is something to consider. (Even with an ASD diagnosis, knowing that NVLD is involved is important for targeting intervention).

 

Anyway, DS is hard to live with, and it can be hard to feel affection. It is just so wearying as a parent, because behavior changes often don't happen, despite our best efforts over a long period of time. My own reserves get depleted, and it's hard to pour more out when it doesn't seem to make a difference. It can be very challenging, and I try to work to find ways to replenish myself so that I can offer more affection.


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#23 imagine.more

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Posted 21 March 2017 - 11:00 PM

((hugs)) Our daughter was/is much the same. And 11-12 was the worst!! Seriously, all her friends had jumped into the middle school world of boys and more nuanced conversation and were thinking about the future. And she was very much still a child and very impetuous/immature in her actions. But, now, at 15 I will say she has come a LONG way. Like, she's due to get her learner's permit in June and I'm not all that scared (a little, but no more than I'd be for any 15 year old, lol). She usually wears appropriate clothes now and when she messes up it's on little things like not wearing warm enough stuff when it's 30 degrees outside. But, and this is huge, if she steps outside she realizes it now and will say "um, I think I need to change, not sure what I was thinking, it's freezing out here!" and go change, lol! Which to me is within the realm of normal teenage ditziness. 

 

So things may improve in 3-4 years. Maybe not to where you'd like, but significantly better. 

 

Like you, I also struggle with relating to my daughter as much as our others, which is exacerbated by the fact that she is newly adopted (2 years ago) so we still deal with things like her crying for 4 hours the other day wondering why she couldn't live with her birthdad (who is seriously neglectful at the least). Kinda stings. Anyway, some things I find that do help are 1) check my own attitude/expectations and adjust down to her level as much as I can  2) focus on her strengths and brag on those   3) try to find ANY common ground. Does your daughter like to shop? Or color? Or paint her nails? Or ride horses? seriously, anything that you can do together. When in doubt...go to a movie, no need to talk during it but it gives you a common subject to bring up later and it's fun :)  One of my kids had severe colic/reflux as a baby while I had postpartum depression and it was hard to love him some days. But I worked at it, because logically I did love him. So I chose to act loving. And then I 'felt' loving more and more over time. Now I have to stop myself from waking him up just to cuddle late at night when everyone else goes to bed. Love the kid to pieces, just like all my kids. You obviously choose to love your daughter logically, so you will definitely get back to feeling more affectionate to her over time. Just work at it, and I don't think it's bad to sometimes call her out on her few behaviors that irritate you the most and try to help her change those so she's more likable. It'll help her make friends too. 

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Edited by imagine.more, 21 March 2017 - 11:01 PM.

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#24 Sweetpea3829

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Posted 23 March 2017 - 07:42 PM

For what it's worth, DS was diagnosed with NVLD at age nine. At the time, I knew nothing about it, and as I read about it, I wondered if the diagnosis was accurate (we suspected autism and already knew of other issues before then, including ADHD). By age 11, I could see it clearly, and by age 12, it is so completely obvious that I wonder that I ever doubted it. That pattern is typical.

 

I would argue that it does matter whether it is NVLD or not. Knowing about DS's NVLD is hugely helpful as we deal with his academic and other issues, because it allows us to dig in and understand better the root problems.

 

When you have your evaluations, be sure to ask for social to be included, if you have not previously. With NVLD, the social issues tend to worsen with age and impact both employability and personal relationships. Getting social skills therapy was at the top of our list of DS's needs, even though he has academic LDs as well.

 

Two other things to consider -- ADHD and NVLD are not mutually exclusive. Treating DS's ADHD makes a huge difference for him and our family. Secondly, many believe that NVLD should be on the autism spectrum, and some practitioners would diagnose ASD in addition to or instead of NVLD, since NVLD is not in the DSM. Getting an autism diagnosis instead of an NVLD diagnosis could result in additional services and/or funding for therapy, so it is something to consider. (Even with an ASD diagnosis, knowing that NVLD is involved is important for targeting intervention).

 

Anyway, DS is hard to live with, and it can be hard to feel affection. It is just so wearying as a parent, because behavior changes often don't happen, despite our best efforts over a long period of time. My own reserves get depleted, and it's hard to pour more out when it doesn't seem to make a difference. It can be very challenging, and I try to work to find ways to replenish myself so that I can offer more affection.

 

That's interesting that the NVLD became more obvious as he became older.  Like I mentioned above, when the school psychologist first mentioned it, I was like, "Nope, you really don't know this kid well.  At all."  

 

Here are some of the symptoms and where she ranges:

 

Visual and spatial awareness:

Many kids with NLD have trouble understanding visual imagery. For example when they are asked to copy a shape like a cube they produce “profound distortions,” says Bezsylko. “These kids can’t accurately perceive the cube, the forms that make up the cube, and the relationships between them. Hence they can’t copy it.”  (This is my kid, to a T....she is a lot better at this now, but as a preschooler and early grade school?  OMW!)

They also have difficulty evaluating visual-spatial information. This means they have trouble grasping the relationships between things they see and having a clear sense of where they are. This can make them physically awkward.  (Also my kid...then and now).  

2. Higher-Order Comprehension:

 

Higher-order comprehension is the ability to identify the main idea in something, the details that support the main idea, and the relationships among them. This affects kids’ ability to comprehend reading, and write or tell a story effectively.  DD DOES struggle a little with this.  But she scored 74th percentile on her STAR Assessment in Language Arts last summer, and her reading comprehension is...*ok*.  Depending on the difficulty of the text.  Her writing ability is very poor...and her writing is usually way off topic.  She needs much scaffolding here.  

3. Social Communication

Most kids with non-verbal learning disorders have trouble reading emotion in facial cues and body language, so they often don’t know what’s going on in social interactions. They miss the social patterns that other kids pick up automatically, so they don’t know what’s appropriate behavior in a given situation.  This wasn't really an issue until the last year or so.  So far, I do not think DD is aware that the other kids in her peer group are distancing themselves.  Then again, she has mentioned a few times that one particular friend (one she's closer with), hasn't been talking to her recently.  But I don't think she's picking up on some of the looks of, "What did you just say" that I'm seeing when I observe her interacting with peers.  

Difficulties with social communication is one reason why kids with NLD often focus—sometimes obsessively—on technology. “In chat rooms or in a video game they don’t have to deal with all the nonverbal stuff,” Bezsylko notes.

4. Math Concepts

Many kids with NLD are very good at rote learning, and they are able to do well in math just by memorizing data. But as they get older they struggle to solve more advanced mathematical problems that are based on recognizing concepts and patterns. Even with a problem they’ve seen before, if it’s approached differently or modified slightly, they have trouble recognizing it.  No see, DD has ALWAYS struggled with math.  Pretty much with all of it.  She DID memorize her skip counting and times tables pretty readily though so...there's that.  

5. Executive Functions

Executive functions are a set of skills we use to organize our thinking, plan and carry out actions, and figure out how to solve problems. Most kids with NLD have weaknesses in these organizing and planning functions. For instance they struggle with breaking down a project into smaller pieces, or conceiving steps that need to be taken to get something done.

“These kids have trouble figuring things out—in fact they don’t really know what figuring something out means,” Bezsylko says. “We have to help them learn to do that—the step-by-step process you go through.”  I remember when this child started to crawl, and she approached an obstacle, often, she could NOT figure out how to get around it.  She would just keep on trying to go THROUGH it.  It was one of several things I mentioned to the Ped.  I remember telling her, "I don't think this child can problem solve.  At all!"  And she told me it could be completely normal, this was a toddler, etc.  But today, this is still a problem.  There is simply no executive planning in this child's head.  Is it from NVLD, or is it just plumb inattentiveness?  I don't know!  

And on other websites, I found this list...

Signs and Symptoms
  • Has trouble recognizing nonverbal cues such as facial expression or body language  (possibly)
  • Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects  (always has to be leaning on something...not just a little either.  All out LEANING)
  • Using fine motor skills a challenge: tying shoes, writing, using scissors  (Yes...learning how to write was so difficult for her.  She could not remember the directions the letters were supposed to go.  Scissors...very difficult.  Tying shoes....same.  She still puts her shoes on backwards, btw.  Overall, she has mastered most of these things at this point.  Her writing is ok when she is focusing...but when she is not, her letter and word spacing is terrible.  Her letter size is inconsistent).
  • Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy  (She would be lost or tardy if I allowed it...but the rest of this, no, she doesn't need to verbally label...as far as I am aware).  
  • Has difficulty coping with changes in routing and transitions  (absolutely not...she goes with the flow...probably wouldn't even notice the change)
  • Has difficulty generalizing previously learned information  (yes.  She does not generalize well at all.  Her learning is very compartmentalized).  
  • Has difficulty following multi-step instructions  (yes.  But I'm not sure if it's due to inattention).
  • Make very literal translations  (She certainly can...as in...give the big chickens the water from the little chickens (except...not when it's frozen!)
  • Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson  (No, not really.
  • Imparts the “illusion of competence” because of the student’s strong verbal skills  (No.  Not at all.  Her verbal skills are average, but a lot of time she says things that she doesn't actually mean.  I can't explain it...but her words do not often match her intent.  Interesting side note, when she was first assessed at 3 1/2 yrs old, her verbal language faaaaaaaaaaaaaar exceeded her receptive language and her receptive language development was pretty far behind...so not sure how that plays in).

Other areas that do not fit her...

 

Humor and sarcasm...she does not struggle with this.  In fact, she uses sarcasm quite well, lol. 

She does not lack meaningful friendships...she has a couple of really good friends.  But, as we enter puberty, that may change, as one is already starting to distance herself.  

 

She DOES struggle with jigsaw puzzles.  A lot, a lot...lol.  She's gotten much better though, but for the longest time, she could not figure out how to orient the pieces.  

 

So I don't know.  She's a complicated kid, lol.  



#25 Sweetpea3829

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Posted 23 March 2017 - 07:45 PM

((hugs)) Our daughter was/is much the same. And 11-12 was the worst!! Seriously, all her friends had jumped into the middle school world of boys and more nuanced conversation and were thinking about the future. And she was very much still a child and very impetuous/immature in her actions. But, now, at 15 I will say she has come a LONG way. Like, she's due to get her learner's permit in June and I'm not all that scared (a little, but no more than I'd be for any 15 year old, lol). She usually wears appropriate clothes now and when she messes up it's on little things like not wearing warm enough stuff when it's 30 degrees outside. But, and this is huge, if she steps outside she realizes it now and will say "um, I think I need to change, not sure what I was thinking, it's freezing out here!" and go change, lol! Which to me is within the realm of normal teenage ditziness. 

 

So things may improve in 3-4 years. Maybe not to where you'd like, but significantly better. 

 

Like you, I also struggle with relating to my daughter as much as our others, which is exacerbated by the fact that she is newly adopted (2 years ago) so we still deal with things like her crying for 4 hours the other day wondering why she couldn't live with her birthdad (who is seriously neglectful at the least). Kinda stings. Anyway, some things I find that do help are 1) check my own attitude/expectations and adjust down to her level as much as I can  2) focus on her strengths and brag on those   3) try to find ANY common ground. Does your daughter like to shop? Or color? Or paint her nails? Or ride horses? seriously, anything that you can do together. When in doubt...go to a movie, no need to talk during it but it gives you a common subject to bring up later and it's fun :)  One of my kids had severe colic/reflux as a baby while I had postpartum depression and it was hard to love him some days. But I worked at it, because logically I did love him. So I chose to act loving. And then I 'felt' loving more and more over time. Now I have to stop myself from waking him up just to cuddle late at night when everyone else goes to bed. Love the kid to pieces, just like all my kids. You obviously choose to love your daughter logically, so you will definitely get back to feeling more affectionate to her over time. Just work at it, and I don't think it's bad to sometimes call her out on her few behaviors that irritate you the most and try to help her change those so she's more likable. It'll help her make friends too. 

SaveSave

 

 

Yeah, DD is really not all that interested in boys.  Though, when she discovered that my best friend's son (a sweet 9 yr old with autism) wanted to marry her, she was all for it.  And she pretty much has adopted the idea that she is going to marry him when they are 18.  

 

Otherwise...*sigh*  You know, I think my relationship with her struggles particularly when I am near "that time of the month".  Maybe I should just take a vacation every month?  


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#26 Storygirl

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Posted 29 March 2017 - 06:09 PM

That's interesting that the NVLD became more obvious as he became older.  Like I mentioned above, when the school psychologist first mentioned it, I was like, "Nope, you really don't know this kid well.  At all."  

 

Here are some of the symptoms and where she ranges:

 

Visual and spatial awareness:

Many kids with NLD have trouble understanding visual imagery. For example when they are asked to copy a shape like a cube they produce “profound distortions,” says Bezsylko. “These kids can’t accurately perceive the cube, the forms that make up the cube, and the relationships between them. Hence they can’t copy it.”  (This is my kid, to a T....she is a lot better at this now, but as a preschooler and early grade school?  OMW!)

They also have difficulty evaluating visual-spatial information. This means they have trouble grasping the relationships between things they see and having a clear sense of where they are. This can make them physically awkward.  (Also my kid...then and now).  

2. Higher-Order Comprehension:

 

Higher-order comprehension is the ability to identify the main idea in something, the details that support the main idea, and the relationships among them. This affects kids’ ability to comprehend reading, and write or tell a story effectively.  DD DOES struggle a little with this.  But she scored 74th percentile on her STAR Assessment in Language Arts last summer, and her reading comprehension is...*ok*.  Depending on the difficulty of the text.  Her writing ability is very poor...and her writing is usually way off topic.  She needs much scaffolding here.  

3. Social Communication

Most kids with non-verbal learning disorders have trouble reading emotion in facial cues and body language, so they often don’t know what’s going on in social interactions. They miss the social patterns that other kids pick up automatically, so they don’t know what’s appropriate behavior in a given situation.  This wasn't really an issue until the last year or so.  So far, I do not think DD is aware that the other kids in her peer group are distancing themselves.  Then again, she has mentioned a few times that one particular friend (one she's closer with), hasn't been talking to her recently.  But I don't think she's picking up on some of the looks of, "What did you just say" that I'm seeing when I observe her interacting with peers.  

Difficulties with social communication is one reason why kids with NLD often focus—sometimes obsessively—on technology. “In chat rooms or in a video game they don’t have to deal with all the nonverbal stuff,” Bezsylko notes.

4. Math Concepts

Many kids with NLD are very good at rote learning, and they are able to do well in math just by memorizing data. But as they get older they struggle to solve more advanced mathematical problems that are based on recognizing concepts and patterns. Even with a problem they’ve seen before, if it’s approached differently or modified slightly, they have trouble recognizing it.  No see, DD has ALWAYS struggled with math.  Pretty much with all of it.  She DID memorize her skip counting and times tables pretty readily though so...there's that.  

5. Executive Functions

Executive functions are a set of skills we use to organize our thinking, plan and carry out actions, and figure out how to solve problems. Most kids with NLD have weaknesses in these organizing and planning functions. For instance they struggle with breaking down a project into smaller pieces, or conceiving steps that need to be taken to get something done.

“These kids have trouble figuring things out—in fact they don’t really know what figuring something out means,” Bezsylko says. “We have to help them learn to do that—the step-by-step process you go through.”  I remember when this child started to crawl, and she approached an obstacle, often, she could NOT figure out how to get around it.  She would just keep on trying to go THROUGH it.  It was one of several things I mentioned to the Ped.  I remember telling her, "I don't think this child can problem solve.  At all!"  And she told me it could be completely normal, this was a toddler, etc.  But today, this is still a problem.  There is simply no executive planning in this child's head.  Is it from NVLD, or is it just plumb inattentiveness?  I don't know!  

And on other websites, I found this list...

Signs and Symptoms
  • Has trouble recognizing nonverbal cues such as facial expression or body language  (possibly)
  • Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects  (always has to be leaning on something...not just a little either.  All out LEANING)
  • Using fine motor skills a challenge: tying shoes, writing, using scissors  (Yes...learning how to write was so difficult for her.  She could not remember the directions the letters were supposed to go.  Scissors...very difficult.  Tying shoes....same.  She still puts her shoes on backwards, btw.  Overall, she has mastered most of these things at this point.  Her writing is ok when she is focusing...but when she is not, her letter and word spacing is terrible.  Her letter size is inconsistent).
  • Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy  (She would be lost or tardy if I allowed it...but the rest of this, no, she doesn't need to verbally label...as far as I am aware).  
  • Has difficulty coping with changes in routing and transitions  (absolutely not...she goes with the flow...probably wouldn't even notice the change)
  • Has difficulty generalizing previously learned information  (yes.  She does not generalize well at all.  Her learning is very compartmentalized).  
  • Has difficulty following multi-step instructions  (yes.  But I'm not sure if it's due to inattention).
  • Make very literal translations  (She certainly can...as in...give the big chickens the water from the little chickens (except...not when it's frozen!)
  • Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson  (No, not really.
  • Imparts the “illusion of competence” because of the student’s strong verbal skills  (No.  Not at all.  Her verbal skills are average, but a lot of time she says things that she doesn't actually mean.  I can't explain it...but her words do not often match her intent.  Interesting side note, when she was first assessed at 3 1/2 yrs old, her verbal language faaaaaaaaaaaaaar exceeded her receptive language and her receptive language development was pretty far behind...so not sure how that plays in).

Other areas that do not fit her...

 

Humor and sarcasm...she does not struggle with this.  In fact, she uses sarcasm quite well, lol. 

She does not lack meaningful friendships...she has a couple of really good friends.  But, as we enter puberty, that may change, as one is already starting to distance herself.  

 

She DOES struggle with jigsaw puzzles.  A lot, a lot...lol.  She's gotten much better though, but for the longest time, she could not figure out how to orient the pieces.  

 

So I don't know.  She's a complicated kid, lol.  

 

About the first sentence in red... a distinguishing characteristic of NVLD is that it worsens with age and becomes more obvious through the teen years.

 

Honestly, your descriptions of her sound like NVLD to me. Remember that it is a kind of spectrum, where some people will have mild symptoms; others will be severe. Not every person will exhibit all of the characteristics.

 

About math -- the reason kids with NVLD sometimes do well with math in the early years is that they can memorize easily and so can learn math facts. But people with NVLD struggle with understanding the concepts of math. Math LD is very common with NVLD. Many cannot grasp algebra and geometry in high school. I was shocked to learn that DS had a math LD when he was 9, but now at age 12, I can see how deep his problems are, and I suspect he will never be able to pass our states' math graduation exams (one for algebra and one for geometry are required; he is enrolled in school and is no longer homeschooled).

 

About reading comprehension -- people with NVLD can often remember lots of details about what they read. The tricky thing is that they can miss the main idea or point of the passage. So they may get interested in one detail and miss the big picture. They also can have trouble with understanding character development and motivation, due to their social skills deficits. DS has a great deal of trouble with inference. He can understand things that are stated explicitly but cannot grasp anything that is inferred. Shifting point of view, flashbacks, etc., are hard for him. The storyline has to be linear and concrete. He can memorize vocabulary but then not be able to use it in his speech or writing. He lacks background knowledge that others naturally have picked up over the years. All of these things have made his comprehension worse over time. Which is complicated by the fact that as he gets older, grade-level reading material contains more and more of the elements that he struggles with.

 

DS is13 next month, and he chooses to read almost nothing for fun. Reading is just hard for him. He recently picked up some books to re-read, which I was really pleased about. They are second-grade readers (The Stories Julian Tells). He is an old sixth grader. However, of my four children, he learned to read with the least struggle.

 

DS loves jokes and is very sarcastic. Even though his NVLD is severe.

 

Nothing that you wrote suggests to me that NVLD should be ruled out for your daughter.
 


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#27 Storygirl

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Posted 29 March 2017 - 06:19 PM

About writing -- DS has great trouble with it as well. Organizing his thoughts is very difficult, because he has trouble with distinguishing main ideas from details. Also he can't integrate multiple ideas into one point. So he can't compare and contrast. He hasn't had to do a research paper, but that will be very difficult for him, because taking several pieces of information and correlating them to each other, seeing how they relate, and writing about it....let's just say that is going to be an almost insurmountable task for him.

 

He actually is a good writer with a nice voice. He enjoys writing for fun. Writing is a strength for him, but it is also a huge weakness. Which is interesting.



#28 Sweetpea3829

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Posted 18 April 2017 - 02:34 AM

Just a quick update on this.  

 

DD and I have been in better space the last few weeks.  I haven't been able to really work on much with our counselor, as we are working on a few things with my husband and that's the focus right now, but...it's on the docket.  

 

I had DDs IESP meeting last week and it went well.  The new Director of Special Ed seems like a real "get it done" type, and I like that.  She did not shy away from my suggestions and seemed to actively take into consideration the various aspects of what I was saying.  She felt, in her opinion, that a follow-up IEE was not warranted, as it would not likely reveal additional info beyond what we already have.  But she did suggest that what we may actually be looking for is a developmental eval.  She's arranging for that to be done.  

 

We talked about meds and discussed the benefits of putting DD on meds now, versus waiting for her evals to be completed, and I'm choosing to wait, as I wish to establish a baseline, have the evals done where she is at now, and then see how the meds make a difference.  

 

They suggested I enroll her in the District's summer camp program so that she would have additional opportunities for socialization but I think we'll be declining that option.  I see her being an easy bullying target and am not convinced the supervision would be enough to prevent that.   

 

So anyways, that's where we are!  Thanks again for everybody's input and suggestions.  I truly appreciate all of it!  


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#29 OneStepAtATime

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Posted 18 April 2017 - 09:49 AM

Thanks for the update!  So glad things are better at the moment and that the meeting went so well.  Yeah!


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