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What do you tell them about their differences, and how soon?


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We have the first part of our OT eval tomorrow, and neuropsych next week. So far, Anna just thinks she went to a "silly" doctor appointment (neurologist), but these appointments are more involved...Maybe she won't think anything of them, but she's a bright kid and I have a feeling she'll at least ask what they're for.

 

When did you tell your kids? Any suggestions on how I should explain the appointments? Should I talk about her ADHD at all? I'm so worried she might interpret it all as there being something wrong with her, even though I'll always frame it positively.

 

(So far, I've talked about her "supercharged brain" a la Hallowell, and she loves that, the idea of her thoughts moving more quickly than most people. I just don't want her to lose that self-confidence.)

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IMHO it doesn't help to keep kids in the dark about their struggles, so my answer to your question is "immediately."  We speak very plainly about what DD struggles with, and what she excels at.  She knew that certain things were hard for her, so explaining that she had an appointment "with a neuro-psych to help us figure out how best to make reading easier for you," or "with the psychologist to help you become better at eye-contact" or "with a specialist to discuss whether medication will help your body to work better."  Made a lot of sense to her. 

 

These kids are smart.  They deserve to be treated with respect.  Use the big words, explain what they mean, and go on with daily life.  If you treat it as a normal thing, they will too.  If you keep it all shrouded in secrecy, they will think that it is something shameful.

 

Just my 2 cents.

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My little one knows that she wears hearing aid to help her hear the way her siblings and I wear glasses to help us see.

 

Autism we've presented as her "still learning how to talk". Obviously that is a very simiplified explanation but the speech & language delay is her biggest challenge. She knows that she goes to speech therapy to help her learn how to talk better. ABA she sees as playing with some nice ladies. Ditto for OT when we did that.

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For ADHD, yes, I'd tell her.  I think they have books for kids about this.

 

My kids' friend has ADHD and she knows it and tells her friends about it.  Her 2nd grade teacher suggested she do her biographical research paper about Thomas Edison, who had ADHD.  She was so pumped.  :)

 

My kids have milder issues, but I've always explained them in words they could understand, from age 3 or 4.  There was really no choice, as they could see the clear differences between the two siblings.  It seems better to discuss it as a specific issue that can be addressed, vs. say nothing and let them wonder if they are stupid or whatever.  (My dad was an undiagnosed gifted dyslexic, and he always thought he was stupid and worthless.  It can be really damaging to leave it to their imagination vs. telling them what is going on.)

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My only two cents is don't use terms till you have the labels solidly diagnosed.  As for why the evals, well I think you can be plain.  (I've noticed you xyz and this person checks to see if people need help with things like that.)  The OT eval should be pretty fun for her.

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I explained what the eval results were in pretty simple, positive terms.  It was a huge relief for DD.  She knew she had been struggling for years and thought she was stupid.  She thought she was living a lie when people told her she was smart.  When they told her she just needed to try harder, since she was already trying harder than anyone in her class, she assumed that she just wasn't strong enough or bright enough to succeed in school.  Having an answer that showed her that she does have strengths and that there are reasons for and helps for the areas she struggles made a HUGE difference.

 

I say share maybe after the evals so she doesn't try to second guess what they are expecting.  Kids sometimes want to please adults and will alter performance/behavior to do what they think is wanted by the adult.  May not apply here, though.  

 

Just don't let the results turn into an excuse for not trying.  DS has had some of those thoughts.  "Why try to write?  I have dysgraphia."  Only it isn't that bad and with practice he gets better.  

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Do you have a diagnosis yet? Sometimes evaluations come back and tell you that your child's struggles falls normal limits for a child that age. I've told my children about appointments with various professionals that we need to have someone else look at this to give me a better understanding of what's going on with _(whatever is being evaluated)__and how to help with __(whatever the child is struggling with)__.

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When I was a child, my mother and father knew I was autistic. They brought me around to try to get me diagnosed, but nothing much came of that because, when I was a child, it was pretty much impossible for a bright, highly verbal girl to get an autism diagnosis. I actually remember the rounds of doctor's appointments, but nobody bothered to explain why I went to those - I thought it had something to do with staying in the gifted program, or possibly with my speech lessons.

 

I knew I was different from the other kids.

 

I knew I was different in visible ways, like being clumsy and never knowing the right words to say and having "tantrums" that I couldn't control; and I knew I was different in non-visible ways, like always being able to hear the sounds nobody else noticed or thinking in the third person or wanting to read the same book 50 times in a row, which even the most dedicated young reader usually won't manage when that book is A Little Princess!

 

And this caused me some degree of stress and worry and confusion. A label like "autism" or "asperger's" would have been much preferable to the labels I found for myself, and that other people liked to find for me, labels like "lazy" and "careless" and "doesn't live up to her potential" and "weird".

 

Having a clear and concise explanation for your differences is a lot better than not having any such thing, in my experience. It does no good to try to hide things, because no child is so stupid they can't see that they struggle where other people don't.

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We have more autism here than ADHD, but I frame it for DS as having an "extra busy brain". Having a busy brain means he learns some things very quickly, but also has trouble going to sleep.

 

Sometimes we move our bodies in particular ways (rocking, spinning, etc.), to help our brains run at a comfortable level of activity. Or maybe focus on a happy thought or conversation to have something nice to think about while other stuff settles down. Some people with busy brains like to concentrate really hard on an activity they love, and sometimes you just need to JIGGLE! And shake all those sillies out.

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Sometimes we move our bodies in particular ways (rocking, spinning, etc.), to help our brains run at a comfortable level of activity. Or maybe focus on a happy thought or conversation to have something nice to think about while other stuff settles down. Some people with busy brains like to concentrate really hard on an activity they love, and sometimes you just need to JIGGLE! And shake all those sillies out.

 

I really like that, Pegs. I think I'm going to steal it!

 

What you've all said makes a lot of sense...It's similar to the way we've always told her about her adoption, so that knowing about it feels natural, and she never feels like it's something to be ashamed of. I feel like I might have a bit more leeway in explaining, since we're at home and don't have to worry about her comparing herself to kids in a class or feeling inferior without knowing why she's having more difficulty than the others. But I think the wording above works really well, and I love how it helps explain to her why she sometimes needs to act the way she does, so that she never blames herself for not being able to control her emotions/wiggles or thinks of herself as a bad kid.

 

I got a book from the library that might give us a starting point for discussion 

Mrs. Gorski, I Think I Have The Wiggle Fidgets (A Story About Attention. Distraction, and Creativity) (The Adventures of Everyday Geniuses)

 and I think I'll read it with her and discuss after we get the neuropsych evals next month. This is so hard for me though, I know it's ridiculous but it feels like, once I actually discuss it with her, there's no going back, it actually cements that it's true...

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Well I'll tell you, when I went to the ps for evals, they asked if the dc knew their label.  The psych said it happens a lot that kids are in high school, even going to college, and STILL don't know their labels!  And while we might use alternative terms or beat around the bush, at SOME point it needs to be said straight.  

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That makes sense. I just despise the fact that ADHD has the words "deficit" and "disorder" in it. Seriously it needs a new name, just understanding the words and identifying with them is inevitably going to give a child self-confidence issues.

 

Have you heard the word "neurodiversity" ever?

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Yes, and I love and wholly agree with the concept, it's the way I'll explain about "differences" as she gets older. But does it mean labels never need to be used? 

Actually, I guess this would depend on the specific situation with the child and the family.  Sometimes, in trying to get help for a child that needs it, labels are required to communicate those needs to those that can provide the help (such as accommodations for standardized tests or OT help for dysgraphia or whatever).  Also, if a child knows they are struggling and doesn't understand why, sometimes the label helps them to better grasp their strengths and weaknesses.  It shouldn't define them but sometimes using terms to describe something helps with understanding.

 

DD needed a label to understand what was happening in school and why things were so hard for her in a standard school setting compared to her peers yet she was so incredibly fast at other things compared to those same peers.  I needed the label so I would know where to target my research.  The school needed a label before they would even attempt to help us get through the end of the school year successfully.  

 

It does not define who she is.  I don't introduce her as "this is my dyslexic daughter with low word retrieval issues".  The label is really irrelevant except for certain specific instances where it becomes more of a help than a hindrance.

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That makes sense. I just despise the fact that ADHD has the words "deficit" and "disorder" in it. Seriously it needs a new name, just understanding the words and identifying with them is inevitably going to give a child self-confidence issues.

I used to call it "addi-happy" with my dd.  Sounds crazy, but that's what we did.  I'm not sure she liked it, lol.  

 

I think your dc is going to be as confident as you nurture them to be.  My dd is way over-confident.  Seriously.  Or I guess over-confidence implies confident beyond ability, and maybe some people think her abilities match her confidence level.  Fine, lol.  I'm just saying it doesn't *have* to be some death nell.  They'll make of it what you make of it.  

 

When dd got her label we were going to a co-op where she just happened to be, that year, in with a bunch of kids, a lot of whom had labels.  So, crazy as it sounds, it was like oh yay I have one too.  I mean, think about this.  The trick is to put her in circles where this is NORMALIZED, where this is no big deal.  I tell her not to use her labels in certain circles.  She knows kids in those circles who have labels, and they're treated like inferior beings.  ABSOLUTELY it affects their self-esteem, but it's because they run in circles where ADHD is not ok, where it's not ok to fidget or stim and use your accommodations, where it's not ok to say I'm gonna move while you do this.  And if that's the circles you hang in, where perfectly normal, happy, ADHD people are called bad, called sinful, called lazy, called not trying hard enough, not allowed to fidget, not allowed to move, not allowed to be themselves, and constantly compared to people who have the neurological misfortune to be really still, boring people who sit in a chair for hours at a time while people drone and call that NORMAL, well then fine, yes your kid will come out psychologically damaged.

 

So hang with people who like her and she'll learn to like herself.  It's real simple.  :)

 

PS.  Same applies to autism.  I only put my ds in with people who LIKE him.  If you don't like my ds, you don't deserve to have him in your class.  Or as Lecka put it, treat the child the way you want others to treat him and perceive him.  I think about this a lot when I'm out and about.

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OhE, I wish I could "like" your comment a hundred times.

 

ABSOLUTELY it affects their self-esteem, but it's because they run in circles where ADHD is not ok, where it's not ok to fidget or stim and use your accommodations, where it's not ok to say I'm gonna move while you do this.  And if that's the circles you hang in, where perfectly normal, happy, ADHD people are called bad, called sinful, called lazy, called not trying hard enough, not allowed to fidget, not allowed to move, not allowed to be themselves, and constantly compared to people who have the neurological misfortune to be really still, boring people who sit in a chair for hours at a time while people drone and call that NORMAL, well then fine, yes your kid will come out psychologically damaged.

 

In other words, keep her out of public school. ;)

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I don't have much time right now, I'll try to post later. Anna's Mom, not sure if you know this but Hallowell has a picture book called " A Walk in the Rain with a Brain". As someone with ADD he knows what it's like being different and wrote the book to help the little ones understand their differences while linking those differences to their brain in a good way. It's a bit silly in a sense that you will never see a brain walking around but sweet silly too. Yes, it's part of our home library :)

 

At this age and before knowing labels for sure I would just approach it as being different and respecting differences in others. Another good book for that is "Ellison the Elephant" by Eric Drachman. I bought both since my oldest was about 7 1/2 and the differences in him were becoming more noticeable to us.

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When my sons were evaluated my youngest was just over 4. We only told him that we were going to the doctor. My oldest was about 9 1/2 and I had done a lot of ground work with him. I had started looking at ADHD when he was around 7 and at the time I had started getting him books that introduced the idea of differences in a kid friendly way. I was not looking for anything clinical. We later discussed what I was learning about autism a bit, mostly at the level of, the brain of a person with autism works differently. We had watched Hellen Keller's life in a movie (his request when he saw me watching it) and Temple Grandin's life. Keller's experience was different but just to give you an idea of the things that he noticed at the time and the approach I took with him. We discussed how people deal with different situations and how they find the power to overcome challenges. Then just before the evaluation I told him that he knows he thinks differently (just as I do) and now the time had come to find out better how his brain thinks. After the evaluation it was easy to tell him that he had autism and that his brain works in a similar way to Temple Grandin's. He could already relate to her due to the things she was always building and how she had difficulty relating to kids her age. I think things like this should be presented gradually, building on the understanding you have helped them develop. The time length for me would depend on the child and the age he/she is at.

 

When it comes to how others view our kids, we teach our oldest that the opinions of those that have little to no importance in our life don't need our time spent on worrying about what they think. We teach him that people tend to judge what they don't understand. We take the time to talk to those genuinely interested in learning. The others we spend little to no time on.

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Ok, I'll just throw this out because I want to talk about it, not because anybody asked, lol.  It at least relates to the topic though.  Our nuance with ds is that right now he is surprisingly surrounded by ASD.  I mean, it's really surprising when you think about it statistically.  There are 5 boys in gymnastics team class, and of them 2 (ds and one other) are on the spectrum and another has a brother (who is often at the gym) who is.  So literally 3 out of 5 families impacted in this particular class.   :svengo:  So what's happening, and don't get me wrong, is that the differences in presentation are making it difficult for me to spin ASD a certain situation.  After all, this is not homogenous.  

 

Ds spends a lot of time noticing the behavioral problems of the ASD boy in his class.  I'm just saying that straight.  And I just listen and think hey, but you have the same label, does it not occur to you that people see YOU that way???  But no, he just talks about that boy.   :smilielol5:    And another of the boys has a lower IQ and hasn't received as many services, meaning there's this big contrast, despite the same label.  His first introduction was to an adult with ASD, and I just pretty much told him he was going to meet someone brilliant.   :thumbup:  

 

 Ds has started, like literally JUST started, noticing that kids don't like to play with him, and I told him it was a social skill and we could work on it.  Like way to be blunt, Mom.   :svengo:  He seemed to take that ok.  

 

I'm just saying, with so much diversity, I don't see how he can identify with a label, kwim?  Unless you just admit upfront when you use/explain it that there is a lot of diversity.  He's not asking for an explanation about himself, mind you.  I'm just saying on a practical level it's harder than I thought.  I don't want him thinking the label implies the things he thinks about those other kids, kwim?  But it is weird.  Like he'll say so and so has x behavior (melts down a lot, blah blah), and then not connect that he himself does this in other settings.  (sudden thought: that other dc is in school, so we might be seeing his worst presentation, his most meltdown, hmm)

 

Adding: We're starting music therapy at the ASD charter this week, so that's going to be even ANOTHER level of experience.  I don't want him saying no, don't take me there, I don't identify with that, don't want to be part of that, if he starts to notice the differences in levels.  At some point surely he will??  Maybe he won't.  Sorry, I'm not trying to paint it like it's some freaky thing.  He's not self-aware enough to have noticed much yet and we've just been there a couple times.  He won't be in classes, just private sessions.  I'm just saying these are more data points, and I'm not sure how a young child is supposed to sort through that and identify with a label when a label has so much diversity.  I'm not sure I WANT him identifying with a label at this age.  He is NOT a label.  He's a child for whom we needed some explanations.  

 

 

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That's really interesting...I think maybe that's where the books Cricket suggested could really come in handy. (Thank you so much, Cricket! I've bought one and listed the other as a suggestion for purchase at our library. :) ) It looks like they're basically reinforcing the idea of the wonderfulness of neurodiversity at a level kids can understand.

 

It's fantastic that your son is around so many ASD kids, you really are lucky, even if he doesn't identify with them. (And perhaps he never should really.) But it's great that he's seeing and learning to accept all types of differences, since it'll help him accept his own uniqueness when he becomes more self aware.

 

I wish we had other ADHD kids here...We don't know anybody, all the programs we go to, the kids are so calm and gentle, she really sticks out and gets noticed by parents/librarians/kids who get annoyed, or look at her like she's a freak. She needs to find people who will understand and accept her, especially as she gets older and her behavior is more and more age-inappropriate. I want to be able to tell her, "You see that cool, funny, smart, joyful kid? That adult who's doing something amazing with his life? Their brains work in a similar cool way to yours!

 

I'll eventually join CHADD and look for meetups, even if we have to travel, but at this point, in this rural area, I haven't found anything at all applicable. 

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From a very young age I developed a sensitivity towards those faced with physical and mental challenges. Perhaps it had something to do with growing up with a sibling that had a certain level of special needs. I could not tolerate anyone making fun of others with challenges. I was chased a few times running to get my father to save my sister from being bullied. She was a tough cookie and never showed fear in spite of being bullied by boys, sometimes 3 or more. I talk a lot with my boys, each at his own level. I always try to show my oldest especially, who is at the level to understand, that those in more need than us deserve our support just like we would like others to stand by us when we are in need. My youngest, if he does something to hurt his brother I get him to apologize and give him a hug and kiss. It is never too early to teach them empathy. That more than anything else helps them see, understand, and respect differences, I feel.

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Ellison the Elephant has a very interesting twist. It actually also deals with our own voice sometimes bringing us down too, the voice that has heard so many taunts by others it has internalized the name calling. In the end though it is that voice that helps him get past his challenges and find his own voice. Sorry for the spoiler ;)

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Ok, I'll just throw this out because I want to talk about it, not because anybody asked, lol.  It at least relates to the topic though.  Our nuance with ds is that right now he is surprisingly surrounded by ASD.  I mean, it's really surprising when you think about it statistically.  There are 5 boys in gymnastics team class, and of them 2 (ds and one other) are on the spectrum and another has a brother (who is often at the gym) who is.  So literally 3 out of 5 families impacted in this particular class.   :svengo:  So what's happening, and don't get me wrong, is that the differences in presentation are making it difficult for me to spin ASD a certain situation.  After all, this is not homogenous.  

 

Ds spends a lot of time noticing the behavioral problems of the ASD boy in his class.  I'm just saying that straight.  And I just listen and think hey, but you have the same label, does it not occur to you that people see YOU that way???  But no, he just talks about that boy.   :smilielol5:    And another of the boys has a lower IQ and hasn't received as many services, meaning there's this big contrast, despite the same label.  His first introduction was to an adult with ASD, and I just pretty much told him he was going to meet someone brilliant.   :thumbup:  

 

 Ds has started, like literally JUST started, noticing that kids don't like to play with him, and I told him it was a social skill and we could work on it.  Like way to be blunt, Mom.   :svengo:  He seemed to take that ok.  

 

I'm just saying, with so much diversity, I don't see how he can identify with a label, kwim?  Unless you just admit upfront when you use/explain it that there is a lot of diversity.  He's not asking for an explanation about himself, mind you.  I'm just saying on a practical level it's harder than I thought.  I don't want him thinking the label implies the things he thinks about those other kids, kwim?  But it is weird.  Like he'll say so and so has x behavior (melts down a lot, blah blah), and then not connect that he himself does this in other settings.  (sudden thought: that other dc is in school, so we might be seeing his worst presentation, his most meltdown, hmm)

 

Adding: We're starting music therapy at the ASD charter this week, so that's going to be even ANOTHER level of experience.  I don't want him saying no, don't take me there, I don't identify with that, don't want to be part of that, if he starts to notice the differences in levels.  At some point surely he will??  Maybe he won't.  Sorry, I'm not trying to paint it like it's some freaky thing.  He's not self-aware enough to have noticed much yet and we've just been there a couple times.  He won't be in classes, just private sessions.  I'm just saying these are more data points, and I'm not sure how a young child is supposed to sort through that and identify with a label when a label has so much diversity.  I'm not sure I WANT him identifying with a label at this age.  He is NOT a label.  He's a child for whom we needed some explanations.  

The bolded..I don't see that as being blunt.  When DS was little, there was a lot of "you struggle with math" because of the SLD...Don't worry because we'll work on it.  When difficulty arose, it was always "let's figure out this issue using your big juicy brain".  I've never couched things in a way that implied you can't do this.  I couch things in terms of strategy and I try to manage my expectations while creating doable bite sized chunks for DS.  As a teenager, he needs to adapt on his own with scaffolding and accommodations.

 

DS knows that he has ADHD inattentive and is not bothered by the label.  He is loved and respected by his family and friends because he is kind, hardworking, and respectful to others.  I praise the LORD for our wonderful friends that encourage him.  

 

The ADHD label could be called "LPWEM" for large pizza with extra mushrooms, inattentive.  DS lives with EF issues.  He is clumsy.  I am not going to deny the issues because he lives with them.  Clearly, we don't share unless we have too but we are not ashamed.  I kinda think other people are misguided and misinformed, but that has no bearing on how we live.  In my view, it's best to get moving and figure out a way to adapt.  

 

We have been living with tested SLDs 8 years now.  His SLDs are mild compared to others that we have seen.  DS knows that fact well and is thankful.  Of course, not every child grows up lying on their back fiddling with their blind aunt's wheelchair.  I guess  you could say I work on keeping an open perspective.

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Anna, all my dd's best friends are ADHD.  Like seriously, she just blossoms when she's surrounded by people who are as equally alive, spontaneous, and all the way as her.  :)  It might take a while, but you'll probably find, with time, with prayer, with a little effort, that that happens.  Girl ADHD is less common than boy ADHD, so it can be harder to find that match.  My dd was in her teens before it finally came together.  Also, my dd's behavior is not socially inappropriate.  Once you get into ADHD with a social delay, kissing the spectrum, that's really different.  Sometimes broadening your net can help.  The psych eval was my first wow experience with ds socially for play, because he was in the lobby with other (clearly spectrum) kids and played so well, where with NT kids he just didn't engage at all.  So go beyond your labels maybe.  

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Heather, LPWEM---that is FABULOUS!!!   :lol:   :lol:  :lol:   We had such a good laugh over that here!!!  That is EXACTLY what it is, but I guess when you hear dd reading it, like large pizza with extra mushrooms (turns head and gets really distracted) inattentive!  LOL  

 

Ok, after that frivolity.  Ok, I'm glad to know you don't think I traumatized him.  It seemed a little weird but reasonable in the moment.

 

Yes, I think perspective is really hard.  I read people saying they got an ADHD label and are traumatized, and I'm like really??  1/3 of the world probably is living with that label.  We live with it.  I'm not saying it's not happening, but like really there are a LOT of happy, functional, productive, did I mention HAPPY adults who are this way and embrace it.  I go to the Y and I just LAUGH at how many ADHD adults there are there.  Get these people in the right environment, and it's an ASSET.  

 

Again, not saying it's not a pain in the butt.  It's just helpful to get that perspective of long-term, where this is really going.  To me, it's more like death of a dream.  If you thought you were going to be this hyper-perfect homeschooler who has your kids in college classes at 14 and graduating at 16 with a full ride to such and such, well kiss that goodbye.  I suppose it could happen, but not probable.  So it's more YOUR grief over what isn't the way you thought.  But when you work through that and begin to form a new image of what they can look like, what it looks like in adults, how healthy and whole it can be, you sort of get post-diagnosis and move on.  Like seriously, my dd is really stinkin' functional except for school.  And there are a LOT of people who work the system in school and can't LIVE.  My dd can live.  She can make things happen and do amazing things, and almost all the ADHD adults I know are like that.  They're AMAZING.  So it is possible to move beyond this, once you get over the initial grief of what is.  

 

Now if you're adding social delays and LDs to the mix, I feel for you.  I live it, and it's not so pretty.  But just ADHD, really I think our culture defines the disability with their homogenous expectations and formulaic approach to everything.  (Borgs, everyone must look alike, function alike, be alike.)

 

Wow, that was a rant.  

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You have given me a lot to think about. We have already planned evals for this year. Some of my kiddos have been self labeling themselves this year as lack of language skills have been evident in youth group actitivies and games. One daughter is self labeling so she can fit in with her buddies who also have amazing strengths and weaknesses. They already know they learn differently, but sometimes it is nice to have a name for it , so that other people understand a bit. Oldest daughter has been translating for sibs for years as to how to most effectively communicate and respond appropriately in different situations. She will describe the body language and facial expression that should be used as well as the words and tone. Curious as to whether this is necessary for sibs because of a dx or delay or if oldest daughter is just sharing her stregths in analysis and how to read people.

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I don't wish to minimize very serious learning issues. They feel overwhelming at times.

 

The discussion about SLDs is an ongoing conversation. DS was tested at the behest of the private school, and we did not expect the results. DS is really flexible and enjoyed the testing. DS had just turned 8 yo. I may have mentioned the results to DS but he was not mature enough to understand the depth of his issues.

 

One convo about results will not satisfy a child's understanding of their difficulties. I have just found the process to be ongoing and couched in terms of strategy and how we can make things better. I am trying to say this better.

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   I tell her not to use her labels in certain circles.  She knows kids in those circles who have labels, and they're treated like inferior beings.  ABSOLUTELY it affects their self-esteem, but it's because they run in circles where ADHD is not ok, where it's not ok to fidget or stim and use your accommodations, where it's not ok to say I'm gonna move while you do this.  And if that's the circles you hang in, where perfectly normal, happy, ADHD people are called bad, called sinful, called lazy, called not trying hard enough, not allowed to fidget, not allowed to move, not allowed to be themselves, and constantly compared to people who have the neurological misfortune to be really still, boring people who sit in a chair for hours at a time while people drone and call that NORMAL, well then fine, yes your kid will come out psychologically damaged. .

 

One of the most infuriating things I've found over the last 6 months is the difference in people's reactions if I apologize for DD not responding to them (or responding with a non-sequitor) by blaming her hearing loss rather than the autism. I don't actually know whether it's the physical disability or the developmental one or a combo, but it shouldn't matter. It's not like one is real and the other she's just being a brat. Yet that's how people act :-(

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Yes, I think perspective is really hard.  I read people saying they got an ADHD label and are traumatized, and I'm like really??  1/3 of the world probably is living with that label.  We live with it.  I'm not saying it's not happening, but like really there are a LOT of happy, functional, productive, did I mention HAPPY adults who are this way and embrace it.  I go to the Y and I just LAUGH at how many ADHD adults there are there.  Get these people in the right environment, and it's an ASSET.  

 

Again, not saying it's not a pain in the butt.  It's just helpful to get that perspective of long-term, where this is really going.  To me, it's more like death of a dream.  If you thought you were going to be this hyper-perfect homeschooler who has your kids in college classes at 14 and graduating at 16 with a full ride to such and such, well kiss that goodbye.  I suppose it could happen, but not probable.  So it's more YOUR grief over what isn't the way you thought.  But when you work through that and begin to form a new image of what they can look like, what it looks like in adults, how healthy and whole it can be, you sort of get post-diagnosis and move on.  Like seriously, my dd is really stinkin' functional except for school.  And there are a LOT of people who work the system in school and can't LIVE.  My dd can live.  She can make things happen and do amazing things, and almost all the ADHD adults I know are like that.  They're AMAZING.  So it is possible to move beyond this, once you get over the initial grief of what is.  

 

Now if you're adding social delays and LDs to the mix, I feel for you.  I live it, and it's not so pretty.  But just ADHD, really I think our culture defines the disability with their homogenous expectations and formulaic approach to everything.  (Borgs, everyone must look alike, function alike, be alike.)

 

Thanks for this. My mourning was not so much over what it would mean for her future as the realization that it would make getting to that future so very much harder for all of us. I did have dreams of how our schooling would be (once she grew out of this :001_rolleyes: ) sweet, quiet days where she'd be snuggled up next to me for hours calmly enraptured by all the information I was conveying, haha. And I've been learning to give up all my preconceived notions of how kids should behave, after having spent my entire life surrounded by quiet, mostly introverted kids who follow instructions and rarely disobey. That's who I was myself as well. The diagnosis has helped me so much there, accepting and adoring every bit of this amazing kid. Thinking about what medication might do and realizing that if it took away her amazing spirit and joy, rambunctiousness and all, I don't want anything to do with it.

 

But I'll admit that while we were at a library program yesterday, and I was trying to help DD work through a tantrum she was having over issues with the fish she was creating, I was watching all the other (quiet, obedient, introverted) kids at our table and I felt so sad for us. Because even if it turns out to be an asset in the end, and helps make her the wonderful, creative, unique spirit she is, right now it makes her life (and mine) so hard and sad sometimes. I have no doubt she'll grow up to be successful with whatever path she chooses, and I'll bend over backward to help her get there. But the emotional and social/behavioral issues are such a huge worry, because those are the things that are most likely to hold her back and keep her from happiness in the coming years.

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  Thinking about what medication might do and realizing that if it took away her amazing spirit and joy, rambunctiousness and all, I don't want anything to do with it.

 

But I'll admit that while we were at a library program yesterday, and I was trying to help DD work through a tantrum she was having over issues with the fish she was creating, I was watching all the other (quiet, obedient, introverted) kids at our table and I felt so sad for us. Because even if it turns out to be an asset in the end, and helps make her the wonderful, creative, unique spirit she is, right now it makes her life (and mine) so hard and sad sometimes. I have no doubt she'll grow up to be successful with whatever path she chooses, and I'll bend over backward to help her get there. But the emotional and social/behavioral issues are such a huge worry, because those are the things that are most likely to hold her back and keep her from happiness in the coming years.

 

It has not been our experience that medication took away DD's spirit or joy in life, but rather that it allowed her body to calm down enough that she can now participate in community events and extracurricular activities.

 

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I have said this before to a few other people, but...... the library and library programs are where quiet, introverted people take their quiet, introverted children.

 

I am quiet and introverted myself, but library programs are not the best choice for any of my kids. 

 

The kids we meet at the library are often not similar in temparament to my kids, as far as just hanging out..... the kids who play nicely and quietly...... we do see more "active" kids there, too, but they are usually staying for a shorter time and then going to hit the park. 

 

I think any environment can draw a group of people where one kind of child may stick out.  I think you have to look around and find the right place. Maybe it is not where you would choose to be as a parent ----- that has been my experience.  But I have been pleasantly surprised to branch out.  I have been pleasantly surprised to try new things on behalf of my kids and find out it is more fun than I thought, for things that are not what *I* am drawn to.

 

But realistically -- all the other parents of kids with your daughter's temparament just choose not to do very many library programs.  It is not that they are out there, or that the library kids are a totally normative group of kids.  It gets very self-selecting.  And then think of the parents who would rather be meeting somewhere for an outing than take their kids to the library?  Or who do go, but are making a point on behalf of their kids b/c it is kinda boring to them? 

 

I think you might do better or worse in any other grouping of people and kids.  One church she might be accepted and loved, at another she might be labelled as a bad kid.  The same for any school or school group, or activity or activity group.  You can't just say "she stands out as very active and uncontrolled at the library" and make that so general. 

 

I also found for myself, I have to look way beyond my own inclinations and things that appeal to me or would have appealed to me as a child.  I have done better thinking of the things that I *did not* like as a child!

 

OhE's comment above was referring to a church environment and not public school, btw. 

 

For two kids I know, they do well in school (public school) where they are accepted and appreciated by teachers and staff.  But they are constantly in trouble at aftercare and in various activities.  The aftercare people are not willing to be helpful and many kids are pulled from it.  My kids (2 of them, not my younger son) I have ride a bus to an after-care that is very social and likes outgoing kids, it is a fun thing for my daughter to do, she likes things like that.  The on-site aftercare is like the worst nightmare that you are probably thinking of, but our public school itself is not that way.  It is not perfect either, but it is not what you might think -- but the aftercare is that way. 

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One of the most infuriating things I've found over the last 6 months is the difference in people's reactions if I apologize for DD not responding to them (or responding with a non-sequitor) by blaming her hearing loss rather than the autism. I don't actually know whether it's the physical disability or the developmental one or a combo, but it shouldn't matter. It's not like one is real and the other she's just being a brat. Yet that's how people act :-(

:glare:   Wow.  I think honestly those would be people I'd be hanging around less.  I don't use his label a lot publicly, but one person I used it with (where it was unavoidable, horrible situation), has been very supportive since.  But you're right, I think it's what we talked about before, that younger parents might have experience but anyone older, anyone of narrow experience, is just going to, well it won't be pretty.  And sometimes, in the circles I hang in, it's like the way they always WERE critical, nasty, etc., but I had just never been the OBJECT of it.  And frankly, I'm so post that, like they can just jump with their critical narrowness talking about stuff they know nothing about.

 

We've talked a bit in our family about how different dd's outcome would have been had she been raised in a different, more critical, more self-made religion church where outward behaviors are everything.

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Thanks for this. My mourning was not so much over what it would mean for her future as the realization that it would make getting to that future so very much harder for all of us. I did have dreams of how our schooling would be (once she grew out of this :001_rolleyes: ) sweet, quiet days where she'd be snuggled up next to me for hours calmly enraptured by all the information I was conveying, haha. And I've been learning to give up all my preconceived notions of how kids should behave, after having spent my entire life surrounded by quiet, mostly introverted kids who follow instructions and rarely disobey. That's who I was myself as well. The diagnosis has helped me so much there, accepting and adoring every bit of this amazing kid. Thinking about what medication might do and realizing that if it took away her amazing spirit and joy, rambunctiousness and all, I don't want anything to do with it.

 

But I'll admit that while we were at a library program yesterday, and I was trying to help DD work through a tantrum she was having over issues with the fish she was creating, I was watching all the other (quiet, obedient, introverted) kids at our table and I felt so sad for us. Because even if it turns out to be an asset in the end, and helps make her the wonderful, creative, unique spirit she is, right now it makes her life (and mine) so hard and sad sometimes. I have no doubt she'll grow up to be successful with whatever path she chooses, and I'll bend over backward to help her get there. But the emotional and social/behavioral issues are such a huge worry, because those are the things that are most likely to hold her back and keep her from happiness in the coming years.

It's ok to grieve, and the things you're saying and feeling are so true.  Here's the thing though on those meltdowns, I think we've talked with you about the idea that there's more going on there.  And I've said to you that as someone who has 2 kids with ADHD (and more), that *I* would use the meds in your situation and not blink an eye.  The things you're talking about go beyond ADHD and they respond to the meds.  The OT will help.  Actually, neurofeedback can help.  I'm "all in" on neurofeedback right now.  My dd has had 10+ sessions (I've lost count), and my ds is in his 2nd week, just got his 3rd session today.  It's AMAZING.  If you want a non-med option, look at neurofeedback.  Zengar is what they're getting, and I like what I'm seeing.  It would improve the specific things you're describing.  If you're wanting non-med options, there you go.

 

https://www.zengar.com/find-a-trainer

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Re the library.  I wasn't picking up on that.  I took my dd when she was little, and she didn't really enjoy it.  I was too imperceptive at the time to pick up on why.  My ds enjoys the zoo education programs, but now that I think about it (comparing them with library kid programs), they're interactive, colorful, and have games, walking, hands-on.  It's a lot of DOING.  They'll have us up jumping and moving from station to station for activities, etc.  And it works great for him.  So Lecka may be onto something that trying different activities might help.  I was really nervous about the zoo program, but in hindsight it was a good click.  

 

I've been thinking about art classes at the art museum, assuming they'd be similar.  Lecka, what's the likelihood of those going well?  I didn't know if they would be sort of hard for him to understand and apply the way they want?  I totally avoided art in high school, because I was scared of my own (in)ability to do it.  I'm artistic, but in this really weird, hyper-detailed, perfectionist, technical sort of way, not like anyone else.  

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One of the most infuriating things I've found over the last 6 months is the difference in people's reactions if I apologize for DD not responding to them (or responding with a non-sequitor) by blaming her hearing loss rather than the autism. I don't actually know whether it's the physical disability or the developmental one or a combo, but it shouldn't matter. It's not like one is real and the other she's just being a brat. Yet that's how people act :-(

:grouphug: We get the brat looks but we keep to ourselves a lot. Both my husband and I were introverted kids in extroverted families but I get what you are saying. We are also in an environment that we have no family or previous friends in, so in our case it has been pretty easy to just keep away from people that don't understand our kids. My oldest has outgrown social outbursts and for most people he is just an NT kid but he does miss social cues at times so he might get a stare. I point things out and we discuss it after we are out of others' presence. I teach him social etiquette. It doesn't have to come naturally. Many high functioning spectrum kids can learn how to adapt to an environment and behave in what are considered socially acceptable ways when they are explicitly taught. I also teach my oldest that he can be different in different environments and that it does not mean that he has to change who he is. My youngest is far from that point but his social behavior has improved drastically since the diagnosis just over two years ago and I am really proud of him. Hang in there :grouphug:

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Thanks for this. My mourning was not so much over what it would mean for her future as the realization that it would make getting to that future so very much harder for all of us. I did have dreams of how our schooling would be (once she grew out of this :001_rolleyes: ) sweet, quiet days where she'd be snuggled up next to me for hours calmly enraptured by all the information I was conveying, haha. And I've been learning to give up all my preconceived notions of how kids should behave, after having spent my entire life surrounded by quiet, mostly introverted kids who follow instructions and rarely disobey. That's who I was myself as well. The diagnosis has helped me so much there, accepting and adoring every bit of this amazing kid. Thinking about what medication might do and realizing that if it took away her amazing spirit and joy, rambunctiousness and all, I don't want anything to do with it.

 

But I'll admit that while we were at a library program yesterday, and I was trying to help DD work through a tantrum she was having over issues with the fish she was creating, I was watching all the other (quiet, obedient, introverted) kids at our table and I felt so sad for us. Because even if it turns out to be an asset in the end, and helps make her the wonderful, creative, unique spirit she is, right now it makes her life (and mine) so hard and sad sometimes. I have no doubt she'll grow up to be successful with whatever path she chooses, and I'll bend over backward to help her get there. But the emotional and social/behavioral issues are such a huge worry, because those are the things that are most likely to hold her back and keep her from happiness in the coming years.

:grouphug: I think we have all gone through that stage at one point or another. I was the kid you describe that you were. My father used to say he could have ten kids like me.

 

Our days here are crazy. Yesterday I was cooking pancakes while my youngest son was reenacting something. He was missing the "in here, out there" concept so I left the pancakes cooking on the stove and would point to him in here (point to the ground) and out there (point outside). I then took him outside and pointed again to the ground under him (out here) and in there where your brother is. We did it a few times while I had him help me flip the pancakes and then I had him say it. At the same time my oldest was bringing me his drawings and asking me my opinion (I had just a few minutes before sat there to show him how he can create a 3D effect while drawing faces). My youngest asked for some carrots while waiting for the pancakes so I put a bowl for his brother as well. I had to push back the tears of joy when I heard him say "(insert brother's name) come and eat your carrots". It means that in our crazy life things are still working out and our kids are progressing and learning in all areas, not just academic. My husband was in the backyard gardening. I saw a smile on his face when I looked outside the kitchen window. I knew he had heard.

 

Our life is filled with moments of juggling a million things at once. It is teaching us the kind of parents we want to be. We have created our own normal and no one's stares or rude ignorant comments can take that away. I feel blessed!

 

Hang in there, you will find your normal too :grouphug:

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Re the library.  I wasn't picking up on that.  I took my dd when she was little, and she didn't really enjoy it.  I was too imperceptive at the time to pick up on why.  My ds enjoys the zoo education programs, but now that I think about it (comparing them with library kid programs), they're interactive, colorful, and have games, walking, hands-on.  It's a lot of DOING.  They'll have us up jumping and moving from station to station for activities, etc.  And it works great for him.  So Lecka may be onto something that trying different activities might help.  I was really nervous about the zoo program, but in hindsight it was a good click.  

 

I've been thinking about art classes at the art museum, assuming they'd be similar.  Lecka, what's the likelihood of those going well?  I didn't know if they would be sort of hard for him to understand and apply the way they want?  I totally avoided art in high school, because I was scared of my own (in)ability to do it.  I'm artistic, but in this really weird, hyper-detailed, perfectionist, technical sort of way, not like anyone else.  

 

I take Anna to a nature program that she LOVES, hands on with the animals, a lot of games, hikes, playing in the stream...I keep thinking that since she loves books and art she should enjoy the library programs which are reading and an associated craft, but she always ends up acting up...I think maybe because there are too many distractions for her. (And yet I keep taking her...mainly because there are so few things for us to do around here with other kids, but maybe it's time for me to stop trying.)

 

Art classes were a dismal failure for us, even though she's very artistic. She loved painting their big wall, and would be very absorbed in projects for a whole 5 minutes, then would just desert them and go back to trying to take all the appealing materials off the shelves. We did art from 18months to 3 years, because it was a parent/child class so I could redirect her, and she did love it. But then I signed her up last year for a 5 and up class, and it was a disaster. I pulled her after the first class.  :closedeyes: My lesson is that she can focus well when there's nothing around to distract her, but it's a completely different story when she's surrounded by other temptations. I assume that's typical, but it does make me sad that it keeps her from things I think she'd otherwise enjoy.

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I take Anna to a nature program that she LOVES, hands on with the animals, a lot of games, hikes, playing in the stream...I keep thinking that since she loves books and art she should enjoy the library programs which are reading and an associated craft, but she always ends up acting up...I think maybe because there are too many distractions for her. (And yet I keep taking her...mainly because there are so few things for us to do around here with other kids, but maybe it's time for me to stop trying.)

 

Art classes were a dismal failure for us, even though she's very artistic. She loved painting their big wall, and would be very absorbed in projects for a whole 5 minutes, then would just desert them and go back to trying to take all the appealing materials off the shelves. We did art from 18months to 3 years, because it was a parent/child class so I could redirect her, and she did love it. But then I signed her up last year for a 5 and up class, and it was a disaster. I pulled her after the first class. :closedeyes: My lesson is that she can focus well when there's nothing around to distract her, but it's a completely different story when she's surrounded by other temptations. I assume that's typical, but it does make me sad that it keeps her from things I think she'd otherwise enjoy.

If it is important to you, you could try setting up your home for something like that for a day and do it with her. Teach her the skills of social behavior hands on. Set up a tea party for Anna and mom ;) There are so many social skills you can teach her that way. By doing she is learning. Going into a social setting that she does not have the skills to know how to act can be overwhelming.
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Art classes were a dismal failure for us, even though she's very artistic. She loved painting their big wall, and would be very absorbed in projects for a whole 5 minutes, then would just desert them and go back to trying to take all the appealing materials off the shelves. We did art from 18months to 3 years, because it was a parent/child class so I could redirect her, and she did love it. But then I signed her up last year for a 5 and up class, and it was a disaster. I pulled her after the first class. :closedeyes: My lesson is that she can focus well when there's nothing around to distract her, but it's a completely different story when she's surrounded by other temptations. I assume that's typical, but it does make me sad that it keeps her from things I think she'd otherwise enjoy.

I fudged the birthdate on my little one's account at the local arts education program to make her show up in their registration system as 1 year younger than her actual age. I don't like to lie but it's not like a sports program where there would be some unfair advantage gained. I'm just trying to make sure that she can participate in developmentally appropriate activities rather than being forced to place her by chronological age.

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AM, wow, I hadn't thought through how badly it could go, but you're right that would be us, lol.  

 

Crimson, that's a good point about enrolling in lower levels.  Someone we made friends with was encouraging us to do art classes with them, and I said no, I'd place him in a class below your boy, even though their boy is a fuzz younger than ds.  The Y has been cool about it, so I would *hope* I wouldn't have to fudge.  But you're right that for a situation where they don't know you, just fudging the birth date would make that better.  No one sensible would want the dc inappropriately placed, and if you asked you'd be subjected to bias.  I remember one time asking a horse riding teacher about working with my dd, mentioned the ADHD, and all of a sudden she's like Oh, I'd never leave her alone with a horse, she'll spook it, she'll mess up, she'll this and that.  

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I just wanted to talk some more about this.  I've started trying to have this conversation with ds and broach the idea of the apraxia.  I was realizing he has NO CLUE that his experience with speech is not like everyone else's.  So this week I've tried to discuss with him a couple times the idea that other people don't get slurred speech just because they're tired, that when you turn your speech off and mumble (which he now does on purpose), you're reinforcing incorrect motor planning and that motor planning was why we've been going to see (insert name of SLP).  

 

It just sucks, because you don't want to come out and say dang it stop you've got apraxia, don't you get it...  But he really doesn't get it.  And it has actually become this weird tool he uses, slurring his speech and mumbling (because he can), to show displeasure, because he's angry.  Others would call it passive aggressive, lol.  And it's weird, because I thought if you TOLD them the label it would make them all whatever and destabilize them, but in a way, at this point, by not knowing he's literally hurting himself!

 

So I just need to think about that, like what I'm going to do and how i'm going to get the word out there, in the open.  I've been trying to let the A word (asd) drop more, so he can just sort of hear it.  But apraxia isn't something that ever comes up in our speech, mercy.  

 

I was just thinking, Lentil (the kid book) has apraxia.  We could go back to that.  He could start to own it.  Sigh.  Dunno.  Just talking out loud I guess.

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OhE, perhaps try to let it come more naturally. With my oldest, I don't plan discussions. They just come up naturally and I let my youngest listen in. Very often you think he is not listening but he is. We openly talk about autism in our home, some of the challenges, some of the differences between how it presents between the two boys, and coping/ adapting skills. At this age I worry that too much of a direct discussion might hurt their self-esteem. So I put focus on the positive, what do we do about it.

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I'm bumping this thread, because I just came across a helpful piece from an adult with disabilities who describes what he wishes his parents had done to help him understand his issues. The writer has NVLD, so some of his reflections are related to that, but I think there is a lot of good general advice as well. He has more to say in the comments section if you page down.

 

http://www.greatschools.org/special-education/community/discussion.gs?content=37842

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My daughter is almost 8. We don't use any labeling terms. We have talked about how her brain works differently and that means she has to focus more and that reading will just take some time. She has dyslexia and ADHD. We talk about focus and we work on it, but I don't want her to feel there is something wrong, so I don't use the labels. When she is older we will talk more specifically about it; but right now, she has no one to compare herself too. She does not know she is behind. I don't want to discourage her by presenting a label.

 

She just thought the testing was a lot of fun. :)

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I'm bumping this thread, because I just came across a helpful piece from an adult with disabilities who describes what he wishes his parents had done to help him understand his issues. The writer has NVLD, so some of his reflections are related to that, but I think there is a lot of good general advice as well. He has more to say in the comments section if you page down.

 

http://www.greatschools.org/special-education/community/discussion.gs?content=37842

 

That's a great link, thank you Storygirl. Especially helpful for me was his points wishing his parents would have discussed the reasons behind his social difficulties. It's something we haven't had to face yet, since my daughter hasn't been rejected by friends (although because of her issues she's never really been anyone's BEST friend), but I feel pretty sure it will happen in the next two or three years as her social skills lag even further behind. To this point I've discussed behaviors with her, we talk about what she's done well and what could have been done differently, but I haven't discussed the reasons she may not be picking up on social cues, or is having a harder time joining in. His comments make so much sense, we want these kids to blame the disorder and not themselves for the issues they face. Especially because it will make them more likely to try to work on changing behaviors, rather than thinking of themselves as innately unlikable.

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