Tell or don't tell?

[Jen Muise]

My daughter has just been diagnosed with auditory dyslexia.  She is aware that she has a learning difference, and that we are working on it to help her.  I don't know how much of the results of the testing we've been doing to tell her, or especially whether to tell her that she's got dyslexia or not.  What have you told your kids about their needs, and how has it worked out?  In retrospect, what would you tell them now? Is there something you wish you had said but didn't, or something you said but wish you hadn't?

[HarperRose]

We were factual about the aspergers w/ Max. It's just the way his brain works, the way he processes things. Give her information appropriate to her age, talk about it openly, stuff like that.

[LynnS6]

I'm in favor of full disclosure, especially for kids that are old enough to understand. Telling her can really relieve anxiety, IMO. It can also show her that you're working to help her and she's not alone. Knowing that she has something called "dyslexia" and she'll need to do some special (and extra) work for her reading can give her a sense of power. It's not that she'll never be a good reader, it's that she needs different ways of learning.

[Jen Muise]

She's 9, btw, and very bright - she knows she's not like the other kids for sure.

[Linda on the move]

If I could go back, I would have told her sooner. Knowing has made it easier for her. Putting off telling her was all about me, and not about her. (even though I didn't realize it at the time)

Your DD already knows something is different about her. Telling her is giving her a chance to discuss and process those differences, and to understand them as something other than being weird or stupid or however she is perceiving it right now.

One day a few weeks after I told my DD, she looked at me out of the blue and said, "so I'm perfectly normal for somebody with Asperger's or High Functioning Autism?"  and I was able to answer yes. She was happier with herself after that.

[Peony]

Definitely tell. I also have a 9 year with dyslexia along with some other things. She knows all of her diagnoses, she may not like that she has them, but she knows why she is different. 

[jondee0]

One of my younger sister's greatest stresses when she was a child, she's told me, is that no one addressed with her the fact that she had Tourette syndrome until she was a teen. Just knowing why she did the things she did, why she acted as she did, was immensely reassuring to her. When I started thinking my 7-yr might have Tourette, too, she really encouraged me to first, inform myself, and second, explain to Micah in 7-yr old terms what the diagnosis means. So Micah knows that he has Tourette syndrome, he knows what that means, and he knows that it doesn't need to be a big deal, that he is more like other kids than different. And my 15-yr old, who has a congenital spinal cord defect and uses a wheelchair, has always know what's going on with her body. She's become a pretty good self-advocate, and readily explains to people why she uses a wheelchair.

I think it's much more of a problem for kids to not know, because I think they quickly pick up on ways in which they're a bit different, and they certainly notice when they're treated differently because of their diagnosis/quirk/difference.

Joni and kids

[FarmerBeth]

Knowing what's up is much less anxiety provoking than knowing somethings different and being scared of what it is.  My DS was pretty relieved with his diagnoses (ASD).  It helped for him to have something he could research with a name to latch on to.  Also, found out recently that he was scared for years that he might have MS because of low sensory sensitivity to pain and some other tactile stuff (doesn't know if shoes are on the wrong feet, etc).  I felt so bad for him that he thought he had something that scary.

[melissa17s]

Letting her know will help.  How can a kid that tries hard with out the level of success of their peers not know on some level?  Also, in telling her about her disability, tell her about the unique strengths of dyslexics.  They are often gifted, visual thinkers, and creative. Using those skills to their advantage along with lots of repetition, they can achieve success (sometimes in smaller increments).  There is good advice related to dyslexia here  http://www.interdys.org Look in the fact sheet area.  

[Jen Muise]

We talked.  She has been confused about how she seems to think something different is going on than the other kids, and she knows she has to work harder to get similar results.  I think she's a bit confused about it but ok.  I told her that Walt Disney was dyslexic, and Edison, Da Vinci, Einstein, Richard Branson etc.  and she seemed pretty excited about that.  Thanks for the help! 

[melissa17s]

Although maybe you have come across this, the list of outstanding dyslexics is long http://www.dyslexia.com/famous.htm .  When I read the Percy Jackson series to my ds, he was so excited because a tell tale trait of the demigods was that they were dyslexic.  

[LitMom]

Hey! I had forgotten that about the Percy Jackson series! I decided based on if it was something the child had noticed/was bothering the child.

I didn't tell my daughter when I suspected dyslexia, when she was 5. But, I told her last year when she was 7, because she had been noticing the same things-- right and left difficulties, that her friends could read and write better than her, that she reverses a lot of letters still-- and had started saying "I'm not good at..." She hasn't been formally diagnosed, as we homeschool, but dyslexia runs in the family, and we do a part-time program at a school, where the reading specialist also thinks DD is dyslexic. I'm hoping to get a formal diagnosis soon, not because we particularly need it, but because it's covered under new insurance we have now, and it may be useful someday in the future if DD needs accommodations on standardized testing. 

Now, DS is also going for a speech therapy evaluation soon. He knows what it's for, because he gets very frustrated when people don't understand him. It's clearly bothering him. I wanted him to know that the speech therapist is someone who teaches kids to use their muscles to talk more clearly. 

[melissa17s]

Originally Posted by LitMom 

Hey! I had forgotten that about the Percy Jackson series! I decided based on if it was something the child had noticed/was bothering the child.

I didn't tell my daughter when I suspected dyslexia, when she was 5. But, I told her last year when she was 7, because she had been noticing the same things-- right and left difficulties, that her friends could read and write better than her, that she reverses a lot of letters still-- and had started saying "I'm not good at..." She hasn't been formally diagnosed, as we homeschool, but dyslexia runs in the family, and we do a part-time program at a school, where the reading specialist also thinks DD is dyslexic. I'm hoping to get a formal diagnosis soon, not because we particularly need it, but because it's covered under new insurance we have now, and it may be useful someday in the future if DD needs accommodations on standardized testing. 

Now, DS is also going for a speech therapy evaluation soon. He knows what it's for, because he gets very frustrated when people don't understand him. It's clearly bothering him. I wanted him to know that the speech therapist is someone who teaches kids to use their muscles to talk more clearly. 

It is good that you are so in tune with your dd.  Dyslexia is a different  way the brain learns to read and write compared to the typical reader, so it is important to get the dx so you can teach her.  Orton-Gillingham, Davis Method, and Sally Shaywitz all present different methods to teach students with dyslexia.    

[RiverTam]

I'd absolutely tell her and give her reading material to help her understand what's going on. 

I'd also recommend "The Dyslexic Advantage" for you to read. It's by Brock and Fernette Eide. Lots of very successful people have dyslexia. Both of my brothers are dyslexic. One is an extremely successful computer programmer. The other is currently working on his second PhD. This one is in biochemistry. The first was in plant genetics. 

[SpottedFoxx]

As someone who grew up during a time that having a label was shameful and my disabilities were shoved under the rug, my son is growing up knowing about his abilities and differences.  I look at it this way, some kids have blue eyes and some have brown or green.  Some kids process information one way and other children a different way.  No way is better than another just like no eye color is better than another.  

[orlakelly]

Hi you don't say how old your daughter is. I think I would only tell if they asked and then I would keep it upbeat. Don't overwhelm with too much info, she is a child. As she gets older her questions may be deeper and require revealing more info to answer. Use your discretion-if you think it will help her-tell her otherwise tread carefully x