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bettyandbob

If your dc has been diagnosed with a "hidden" disability...

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When did you tell them.

 

It occurred to me I've been things like "doing x,y,z is just harder for you. You have to learn the steps around that." And then teaching strategies for that issue. I don't think I've ever named the overarching condition. Stuff was put into paperwork to obtain accommodations for classes and AP/SAT exams, but I don't think the student ever looked at that.

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I've called it what it is all along, really. As Hermione said, fear of the name only increases fear of the thing itself. Or something like that.

 

I'm matter of fact about this stuff. It *is* fact and I don't wish to treat it secretly as though it's a character flaw, because it isn't.

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We waited FAR too long!  But we didn't have an official diagnosis until he was 14.  I think when he was around 12 or 13 I started bringing it up.  He didn't see it.  He was in denial and would argue.

 

Then I bought a little book, written by a 12 year old, that explained things more clear.  When I read portions of it to him his eyes got really big and he would say,  "Hey, that is just like me!"

 

Thankfully, he is now completely ok with it, is in group and individual therapy, and has friends who also have it.  

 

So, yes, you need to talk about it.

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I always discussed it with my oldest, at age appropriate levels. He was dx'ed with Aspergers at 4/5.

 

Now that I stop to think about it, I'm not 100% sure if my 12yo knows she has ADHD!  We've talked about so many aspects for so long now, I can't remember if it's been stated outright.  It took us a long time to officially get things evaluated, starting when she was about 8.  I spent a lot of time talking about "thinking differently", since we were looking into multiple possibilities and didn't know which would stick.  I do know that she knows she and I have many of the same issues.

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Instantly. IMHO knowledge is the best tool these kids have for negotiating their struggles. I want them to have every tool possible.

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My kid was diagnosed with ADD and other things when he was 10.   He knew what was going on then; he knew why he was being tested and he was in the meeting with the neuropsych when we discussed test results.  Same thing when he was retested at 17.  Last week he met with the disability office at the community college so he could get his accommodation for his dual-enrollment class next semester.   He knew for a long time that something was wrong; there was no point in trying to hide it or not talk about it.  

 

Kids won't be kids long and they need to learn how to advocate for themselves.  The sooner they start, the better.

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We waited FAR too long! But we didn't have an official diagnosis until he was 14. I think when he was around 12 or 13 I started bringing it up. He didn't see it. He was in denial and would argue.

 

Then I bought a little book, written by a 12 year old, that explained things more clear. When I read portions of it to him his eyes got really big and he would say, "Hey, that is just like me!"

 

Thankfully, he is now completely ok with it, is in group and individual therapy, and has friends who also have it.

 

So, yes, you need to talk about it.

Do you remember the name of the book?

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My child doesn't have a disability but she does have a couple conditions including a gene mutation that will affect decisions she makes as an adult. I have explained parts of her condition all along so it isn't some huge surprise someday, part is so out of her ability to understand that we will wait until she is older.

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We waited FAR too long!  But we didn't have an official diagnosis until he was 14.  I think when he was around 12 or 13 I started bringing it up.  He didn't see it.  He was in denial and would argue.

 

Then I bought a little book, written by a 12 year old, that explained things more clear.  When I read portions of it to him his eyes got really big and he would say,  "Hey, that is just like me!"

 

Thankfully, he is now completely ok with it, is in group and individual therapy, and has friends who also have it.  

 

So, yes, you need to talk about it.

Dawn, what was the book?  Oh, I just saw someone else asked, hehe.   :)

 

I think in our case that book would be a good way to have that discussion.  We have a really awkward, contradictory situation, where he's both gifted and disabled in subjects.  We talk about some things, but I don't want to SABOTAGE his thought process that he's also shockingly CAPABLE at the same time as being disabled.  It's crazy.  But the book idea, I like that.  Right now we are just slowly introducing concepts and terms.  I also have this positive thinking campaign going, where any time I can find a POSITIVE example of someone with that issue, I let him see the video or their picture and the news article or whatever.  So he doesn't connect that term to himself, but he has the idea that that term can be associated with happy, fulfilled people.

 

Edited by OhElizabeth
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DS started the diagnosis process at 15, and had a full neuropsych at 16.  His doctor and I have been honest with him all the way, but obviously he was older when the process started.  The neuropsychologist also had him in for a consult and they spent about an hour going over the test results together.

 

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DS started the diagnosis process at 15, and had a full neuropsych at 16. His doctor and I have been honest with him all the way, but obviously he was older when the process started. The neuropsychologist also had him in for a consult and they spent about an hour going over the test results together.

Oh, a good neuro going over results with the child is a great idea! For teens, at least.

We're struggling with explains testing results to our 13 year old. We've always just explained a LD as everyone learns differently, etc, but recent testing shows borderline IQ. How the heck to you tell that to your child?!? Without crushing them... Ugh.

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I told my 7 year old she is dyslexic.  I think it was  a great comfort to her. She can't read and I know she thinks she is stupid, despite everything I've tried to buck her up. Hearing that she has a brain that works DIFFERENTLY but not WORSE was a good thing. 

 

I have not told her she has ADHD yet.  It's hard because I know with the dyslexia that she feels good about knowing some factors are out of her control......... but with ADHD that might become a "well, I can't [remember things / focus / whatever]".   It's true she can't, in some cases, and we accommodate for that. I just haven't figured out a way to talk to her about it that will make it empowering for her quite yet.

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I openly discussed one of the diagnoses and checked out books on it to read together (dyslexia), and DS knows he has it and will tell anyone. The physical dysgraphia and dyspraxia I've explained and discussed but I haven't named them except in conversations with adults mostly. I believe we've read books on them though, too. I will likely name them better for him relatively soon. For reference, DS is 7, diagnosed at 6 (and told at 6), known concerns since 4.

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My kids know, for the most part.

 

The only thing I'm quite sure how to explain to my son is his IQ (he's not ID, but not average). I think it's important he understands it to the best of his ability. He does have a clue, but I'm not ready to completely get into it yet.

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My son has known since he was old enough to understand, because it (dislocated lenses in his eyes) meant that we had to put certain restrictions on his activities to protect his sight. As he got older, it meant that he could self-limit as needed, and advocate for himself. In recent months, we have had a more definitive diagnosis (Marfan Syndrome) which came with even more limitations. 

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On a funny note, when oldest ds was about six months old, we took him to a ballgame. The little boy, maybe five years old, who was sitting next to me noticed that ds had a "stork bite" birth mark on the back of his neck. He asked me if it hurt my son. I told him that, no, it didn't hurt, and that my son didn't even know it was there. The boy's eyes got real big, and he asked me, "Are you ever going to tell him?"

 

That son is now 26 years old, and I'm not sure I ever told him. He is visiting for Christmas, so maybe I will tell him today. I don't want him to think I withheld important information from him, LOL. 

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We talked about it early on; as soon as he started medication. How we talked about it was age appropriate but we always said the name.

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DD9 has grown up knowing all of her diagnosis.

 

DD17 was hugely relieved when she got her Dyslexia dx at 15yo and ADHD dx at 16.  We knew she had both all along and she knew growing up that both were likely, but we never had her diagnosed until we needed accommodations for it.  She said it was nice to finally have a name for why she struggled, when other kids didn't.  She was relieved to know and understand the roots of her issues.

 

DD17 has a boyfriend who was obviously ADHD. He also had Dysgraphia (a form of Dyslexia that greatly affects penmanship).He lived with his grandfather but saw his mom weekly. His mom had him tested and diagnosed in middle school, but only told him about the Dysgraphia.  She didn't want him to know about the ADHD and didn't want it on his school records.  She told me herself that he didn't know.  I don't really understand that, because she herself has raging ADHD. She even used medicine herself to control it when she needed to for school (she was in a Masters program), but preferred to be unmediated.  Her son barely got by in school.  He struggled with behavior and impulse control.  He didn't do homework and often cheated to get by in classes like math that you could Google the answer key to text books.  The kid was very, very smart and could have been an A student.  But instead his school experience was that he struggled with bad grades and with guilt after he did something he knew was wrong.  He has a pretty significant depression problem due to it. His impulse control was so low that he repeatedly got himself behind in school or into trouble.  When he and she were dating, I started purposely giving him heavily caffeinated drinks and even required him to be caffeinated to be in my house.  He was a totally different person if he was caffeinated than when he was not, and he knew it. I told him about  ADHD and how caffeine affects it. Then he would tell me "my mom had me tested, I'm not ADHD. I'm just stupid and make stupid decisions".  It broke my heart and finally told him what his mom said. Once he knew, he felt better, but since his mom wasn't willing to do anything about it, he continued to struggle.  He is still in high school, but I know last year he only passed a couple of his classes and took summer school to get credits.  That will likely be his future until he gets it figured out and goes on medication. Caffeine helps him, but isn't enough. He grew up, thinking that he is stupid and isn't a good person...instead of having the chance to get treatment for his medical condition and to embrace and understand the benefits and struggles common to those with ADHD.  The 18months my dd and he were together, his family say were they best years of his life, in terms of behavior and school work.  He passed his classes and was more settled emotionally.  They thought it was her, but honestly a lot of it, was the fact that his ADHD was the most controlled it had been in his lifetime. When they broke up and I stopped providing him the caffeine, he went back to his old self.

Edited by Tap

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