Is now a good time to discuss my ds's diagnosis

[cdwise]

Did a full work up about a year and a half ago, and ds (age 10) has a diagnosis of dyslexia, dysgraphia, and high functioning Asperger's. I'm not sure I totally agree with the autism diagnosis because once we got it, his symptoms seemed to resolve a great deal.  Anxiety????  After testing below grade level every year, at the end of 4th grade he's reading at 6th or 7th grade level.  He just finished a 500 page novel.  Writing/Spelling/ Math are still pretty gnarly.  He's doing really well with making friends.  We've talked about strengths and weaknesses, but I've never referred to his situation as "dyslexia" with him.  We do hybrid homeschool, so I'm feeling like he's had some successes, we're starting a new year, and sitting down with his teacher, etc. might be a good idea.  I don't know what we'll do for Junior High/High School, but I don't want to "surprise" him with new information at that point. I'm hoping that he'll learn to advocate for himself, but I also feel like he's doing so well that maybe I'm making too big of a deal.  Friends, etc. say they don't notice any problems--his teachers always do--but ????  Need some validation/personal experiences, whatever.  Did your dyslexic/hf apserger kid show great improvements, but then have setbacks?  Did they improve, but you still use the diagnosis b/c it helps them understand themselves better?  Has anyone had a really bad experience trying to have these kinds of conversations?  I've read through every LD website on the topic, but I just need a little courage to jump off the ledge. Or warning to hold back?  Thanks!

[PeterPan]

My ds is younger than yours but may get similar labels.  I know we get the same thing, with people not believing certain things when they just know him in isolation.  It makes sense that his teachers would notice it more, because they seeing him compared to his peers for a fair number of hours a day.

 

You might be a victim of your own success.  As in, you've done so much to help him, intervene, bring in supports, have those discussions and the scaffolding, that you don't realize where he would have been without it or that you're having to work abnormally hard to support him.  That's what Kbutton on the boards here pointed out to me, that I'm so used to dealing with ds that I don't realize the unusual amount I'm having to work.

 

That's great that your interventions are working academically!  What wonderful success on the reading!!!!   :thumbup:  Junior high is such a sticky age, you're wise to talk with his teacher.  Of course I say that, not having done it.  Well that's not true.  I *didn't* tell ds' swim teachers this summer the first session about his problems.  I just put him in and thought his great attitude would carry him through and that we had it under control with our car chats.  Then he took on a ton of water, developed anxiety, and stopped being willing to jump in because an idiot novice teacher was ghost teaching and didn't have a clue.  So I was the idiot that put him in a situation where the supports he needed to succeed and not have things backfire were not provided, and the payback (his current unwillingness to jump in the water) is hard to deal with.  It's a question of whether he has the ability to support himself or whether he needs continued support.  It's a question of whether the consequences of not having the support are less than whatever negatives you perceive in telling the teacher.  

 

I would think a SN dc is a setting like that ought to have an informed teacher.  If she's worth her salt, maybe she'll research, ask what she can do, and rise to the challenge and be a BETTER teacher for him by being informed.  The teachers I've talked with about my kids' needs have been very gracious.  My mistake was when I DIDN'T talk with them.

[Lecka]

I happen to like the counselor at my son's elementary school and I would talk to her, she does this kind of thing.  

 

I knew her from military lunch (my son went to military lunch twice a month with her) and I talked to her about my older son when my younger son was getting diagnosed with autism.

 

Their policy is that no one will use a label/name if the parent does not want it, but they will use it and provide information if the parent does want it.

 

I think it is really hit or miss if a counselor at school is going to be helpful or not, but I would talk to this woman again.

 

My attitude is this ----- 20% of the kids at my son's school are military, and this counselor has been at this school for 10 years.  She knows, in some ways, more than me about what a deployment is going to be like for a certain age of kid, and she has got useful information.  Plus, she is nice.  So, why shouldn't I accept that help?  She does not have first-hand experience, but she has knowledge and has talked with a lot of kids and parents.  

 

So I think -- why should I re-invent the wheel, if there is someone who already has worked with many kids in the same situation, and has seen many scenarios play out.  

 

The drawback can be that she may think things are about his diagnosis that are not about his diagnosis.  But ime you can just answer back "no, and this is why" and they may be like "oh, I wasn't aware of that."  Or they may silently disagree, but still try to work with you.  

 

I think too, it is important to find out if he has any impressions of the labels.  A frustrating thing for me was that my older son knew 2-3 kids who had autism in his grade.  Well -- the kids where it is public knowledge that they have autism, in his grade, all use iPads for communication.  There are other kids but it is kept private, they are not known as kids who have autism. So -- my son was always asking me when my younger son would get an iPad, and I didn't figure out for a while why he thought that.  It happens my younger son can communicate verbally (though his communication skills are not necessarily better than another child using an iPad might have, which is another complicated thing to explain, and something I didn't even realize for a long time).  

 

This is something I have heard, too, locally.  Locally there are parents who do not want the label ever used with their kids, and that is totally respected. However -- some of these kids (I heard this) go to a cool after-school program held at the middle school.  Some of the kids are being told by their parents, that this is good for them b/c they have Aspergers, and some kids are not.  But the kids talk, and they will tell the other kids that their parents told them it was a program for Aspergers.  But then the teachers can't say anything, b/c of the parents' desire to not disclose.  But the kids know anyway, and are just getting information from other kids.  

 

Then there are some parents who choose to make different after-school plans for their kids, b/c of the label being associated with the program, even though there kids would like it and benefit.  (In theory -- it is also possible they looked into and didn't think it was the best option.)  

 

But locally I have had experiences of school people kind-of feeling me out, and seeing what I am open to.  B/c some parents are not open, and will draw back if a school person says more than they are comfortable with.  So I see the school people trying to avoid that.  But if you are open, or ask, they will say more than they will volunteer if they are not sure if you will pull back or not.  

 

It is hard b/c my son was diagnosed when he was turning 4, so by the time he is 10 I will have been talking to teachers for over 5 years.  But then there are parents whose kids are 10 who have only had the first suggestion of a need for testing come in the prior year or two.  

 

I went to a parent support meeting through the school district last year, and there was a couple there in that situation.  The father said flat-out that no, he was interested in many things, there was no need.  Someone from his school was there and had a brief look on her face of disagreement.  The mother was sitting with him and she was the one who talked to school and who was with him after school and helping him with his homework.  But the father was just not seeing it, and it is like, you can really push the father away, or you can just let a little time go by.  

 

So I think -- at school make sure to ask and let them know you are open, even if you are also deciding to wait for talking with your son.  

 

But they may have an idea for a good time, or how much information to give at first, based on knowing your son and specific things about him.  I think that is better than information from a book sometimes.  I like information from books, too, but I do not think that it is always as good as when someone who has known many kids who might be like your son or different from him, has an opinion.  

 

I also think it is hard to tell if you are making too big of a deal, or doing something appropriate.  I think that if you like anyone at school or any teacher, you can ask their opinion.  It will still be there opinion -- but they will have seen your child in group situations where he does not have his parent available, and they will have seen other kids.  They are in a position to have information you do not have in the same way.  I would not just unthinkingly do what they think -- but I think it is something to consider and ask about.  

 

You can/should also ask his teachers if there are any strategies they have found that work well with your son.  Then you can tell the next year's teachers that information very early in the year, so they are not left to try out things that the previous teacher already knows are not good strategies.  Like -- if thing 4 on the list of things to try is what works, why waste your child's time and the teacher's waiting for the teacher to notice something is needed and try things 1-3.  I have not done this, but I was told by my son's OT that you can ask the previous year's teacher to write a note for the next year's teacher.  I think that is more -- you think the new teacher would respond better to a note from a teacher than to a parent report.

 

For my older son, I have not talked to him.  He knows he has a harder time with handwriting and went to OT for a year.  But I have not said "dysgraphia."  But, he is not officially diagnosed, either.  It has not been on my mind, lately, but I talk about strengths and weaknesses, too.  I have been unsure to what extent I should try to have accommodations set up in advance for him, and to what extent I should see how he does and then try to have them added.  I think I lean to the second for him, b/c I think it is appropriate for him, with where he is at.   But I think the teacher should definitely know he is not "just being lazy" or "just not trying" or "being sloppy on purpose" or "having a poor attitude about school work" etc b/c those are damaging things that a teacher could easily think without having more information.  

[geodob]

While neuro-typicals define LD  as a Learning Disorder/ Disability?

For the millions of people that live with these different LD's?

It is lived as a Learning Difference.

 

Where their are labels for these different ways of learning.

So that you might rather present it to your DS, as a diagnosis of his way of thinking and learning?

Which can be used as a guide to help him fully realize his potential.

 

 

[albeto.]

I would discuss it with him. Dyslexia isn't about reading, it's a neurological processing glitch that is most easily manifested in reading. The glitch is part of his brain and in some ways it will likely help him think outside the box in unexpected and cool ways. In some ways it may make processing information difficult. If he doesn't know why, he's likely to attribute the difficult to other things - someone else's fault, or maybe his fault. There's no "fault" in dyslexia and autism. It is what it is. It's like being left handed. The rest of the world assumes right handedness and so things may feel a bit awkward when having to think about the switch, but there's no shame in it. I'm all for empowering kids, and knowledge is power. Give him the knowledge and approach it as a matter of fact issue, with no value system attached one way or another. Hide it from him and he'll figure it out himself, hopefully. But why waste time when you can give him the tools he needs now? 

 

I say this as a mother to kids with learning challenges, but also as a sister to a person with profound dyslexia who was not told by our parents. The idea was, why bother? She'd almost graduated high school, was going on to college, surely she had it under control, right? Wrong. She discovered it herself and had to learn all the ways her brain processes information differently than others. Now she is aware of these glitches and knows how to respond to events appropriately. She recognizes her strengths are far and above others in some areas, and her weaknesses will likely never get better. She's learned how to outsource what she needs because she knows what she needs. She can be someone else's outsource and people appreciate her contributions in places they would be struggling otherwise. 

[cdwise]

Thank you all so much for these perspectives.  Albeto, as the only left-handed person in both my family of origin and my family with kids, that's an awesome hook.  I can really use that.  

 

[cdwise]

I spent some time both last night and this morning talking with him.  I was able to use the "left-handed" idea to explain how it's not his fault, and how sometimes it takes time for people/schools/institutions to catch up to new information about the brain, so that's why school can be hard. He actually got really emotional and when I asked why he said it was because he was so happy to have an explanation for why other kids could do their work so much faster than he could.  Thanks for all of your insight and help.   :grouphug:

[albeto.]

I spent some time both last night and this morning talking with him.  I was able to use the "left-handed" idea to explain how it's not his fault, and how sometimes it takes time for people/schools/institutions to catch up to new information about the brain, so that's why school can be hard. He actually got really emotional and when I asked why he said it was because he was so happy to have an explanation for why other kids could do their work so much faster than he could.  Thanks for all of your insight and help.   :grouphug:

 

Way to go, Mom!

 

:hurray:

[SandyKC]

I spent some time both last night and this morning talking with him.  I was able to use the "left-handed" idea to explain how it's not his fault, and how sometimes it takes time for people/schools/institutions to catch up to new information about the brain, so that's why school can be hard. He actually got really emotional and when I asked why he said it was because he was so happy to have an explanation for why other kids could do their work so much faster than he could.  Thanks for all of your insight and help.   :grouphug:

 

I'm late to this conversation, but in the decade I've been helping parents, I've never had a kid that wasn't relieved to know what the "problem" is.  My son was very relieved to know why his "brain didn't work right" (as he put it).  The kids KNOW. They KNOW there is something different about their learning as compared to other kids and it is a relief to have an explanation.

 

Like albeto said, the kids often assume something is wrong--horribly wrong, they think they're stupid or it's their fault for not "getting it," or worse.  When the kid has a true reason and diagnosis, it gives the child hope, especially when they know other people  have the condition too.  It is great for them to know there are other kids like them--a group they can belong to! 

 

It sounds like you did a fabulous job talking with your DS! :-D Congrats!  :hurray: