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Special Needs
Telling child about their diagnosis any advice?
My DD has Aspergers and we have known for over two years now but haven't told her. She is really starting to pick up on her differences compared to other children. I think that it is time to tell her (thanks again Auntie for the gentle shove). Considering that we have waited this long to tell her and she is nine years old do you have any tips on how to go about doing so? I don't want her to feel ashamed of it but am concerned that might be inevitable since we have kept it from her. Did you tell your child? How did you go about sharing the news with them?
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Re: Telling child about their diagnosis any advice?
I'm going to jump in here too... I've been thinking about this a lot recently. I'll look up those book recs.
DS is 5 - When we moved, we went to the new Pedi and I got hit by a bus because for some reason I didn't even THINK about the potential for her mentioning this in from of DS. We were there for a sinus infection, not his physical yet. I brushed it under the table and told her we would talk in private. Then, I had to take DD to a GI specialist and for SOME reason she asked about DS too.
Anyway, he is old enough that I don't want to talk in front of him in the 3rd person unless we have talked with HIM first. I just don't think he has the filters in place to: #1 Care #2 Understand #3 Discern when it might be a good time to talk about it and when it's inappropriate.
Auntie, you said 9 is a little late. When is it a little early? I REALLY don't want him playing cars and then break out with 'So how was your day at school, I have aspergers and 2 cats' He is VERY random when he's trying to talk to other kids.
I'm going to add my two cents for what it's worth
As a Kindergarten teacher, five year olds are at a stage where they do notice differences (even stubtle ones) in children and every single autistic child I have had in my class (that came in diagnosed) knew and it was fine. I had one mom come in once to teach the class about autism. She did it in an amazingly kid-friendly way and it really helped the kids understand why D. would sometimes behave the way he did. If anything, they were MORE compassionate to him because they understood that he wasn't just being "weird" or "bad" (because 5yo think in simple generalizations like that). Also, as Auntie suggested, I highly doubt your child has not heard you discussing it (most parents would be shocked by how much their children overhear and then share with their classmates/teachers).
DD does not have autism, but does have a neurological disorder. We plan to treat it in the same way we would any other condition (LOVE Auntie's comparison to diabetes). She is going to grow up knowing about it so that it is never a "suprise." We won't allow it to be used as an excuse, but I think it is important for her to know why some things are harder for her.
Just wanted to tack onto this one- it's amazing how much kids pick up on. We were walking out of DS' inclusive preschool room the other day (3-4 year olds). Another little boy was walking out with his dad at the same time. I've chaperoned the class on field trips so I knew this kid was one of the "typical" ones. DS is one of 3 in the class with autism. The kid says good bye to DS and waves, DS reciprocates which makes me happy.Then the kid (who I think is 4) turns to his dad and says: "That's DS. He's one of the kids in our class who doesn't know very much. He has to have extra help." At first I was mortified, but then realized he was just being matter-of-fact and not mean.
Thanks for beginning this thread and for the responses.
When he was a little younger, I came to terms with what it meant for me and I found myself wanting to share this info with other moms who might care or neighbors who's kids play with my own, teachers, etc... We still don't have a FIRM dx. He was only Dx at age 2 with 'autism' and so I can't REALLY tell him he has Aspergers if noone has ever put that in b&w. He is 100% somewhere on the HFA/Asp spectrum..... but I think my realization that his needs very much trumped my earlier quest for 'diagnosis' have left me in a confused place. There really ISN'T a title I'm comfortable with since 'autism' doesn't fit. Does that make sense? I think this is maybe where I need to start. I need to address the differences and the possibility of whatever the 'title' needs to be.
I think he just grew up on me.... the year between 4 and 5 flies by and getting over MY OWN insecurities and being in a better place made me also be in a place where I wasn't thinking about it so much. So, at least for me... it's less about me having insecurities than it is just simply missing the boat and perfect timing on telling him. I need to educate myself on HOW and go forward.
I've told people I care about..... how awful would it be for that first face to face conversation to take place between him and someone else??!! I think this needs to happen quickly. Thanks for the thoughts.
He doesn't fly below the radar and I am certain his peers notice differences. I know it for SURE...and he is pretty annoying to our neighbor (who is 6) so we have to supervise that A LOT since his social attempts are ....... pretty annoying to a 6 year old....... to say it the way it is.
I guess I don't know other 5 year olds well enough to even know what they would DO with 'I have aspergers'.... I think that's more my question. Not so embarrassed by it... just what do they DO with it? Maybe it's not as big of a question mark in my mind as to when is it/not appropriate to talk about..... cause kids DO talk about lots of weird inappropriate stuff.
Several of you also mentioned him overhearing us talk.
When we talk about differences/struggles... we have been honest and talk with him as well as around him I'm sure. We have to address MANY issues between he and his sister that relate to his differences.... he likes to laugh at her when she is making dev. appropriate attempts at writing etc... and we talk about how she doesn't need to know how to do that better yet. That launches into conversations I consider very related to this topic.
We don't keep any of that from him... I think all he lacks is the 'title'. Since we lack having the title as well, I am certain that's what I need to address first. Maybe we just need to explain HFA/Aspergers.... and leave it at that. But I'm thinking we should have this conversation with the Pedi and let her know we are wanting to have this conversation... so we want a little more concrete info.
Seeking "Diagnosis" has been a touchy subject. Does anyone else get that from the professional community? They don't want to talk in terms of diagnosis when you already have a diagnosis on a 4/5 year old.... albeit a broad one from when he was 23 months old.
We have just moved from NC to PA, so we are already feeling a major upgrade in terms of care. NC didn't have much to offer... imo.
We also talk to our daughter about her "struggles". When there is something that she has a hard time with, like controlling her tone of voice so it doesn't sound like she is having an attitude, I will tell her about it. I always tell her that everybody has things that are hard for them or they struggle with. Some people have a hard time with math, some with sports, she has a hard time communicating sometimes. So in a way I guess we have told her and just not given her that label yet.
"Seeking "Diagnosis" has been a touchy subject. Does anyone else get that from the professional community? They don't want to talk in terms of diagnosis when you already have a diagnosis on a 4/5 year old.... albeit a broad one from when he was 23 months old."
Even with my nine year old sometimes I feel that her councilor has a hard time talking about her aspergers. When we are speaking a lot of times the councilor with refer to her ADHD but almost never to her aspergers, at least she doesn't use the term. And to be honest I am much more concerned about the aspergers symptoms than the ADHD because they are the ones impacting her the most. Sometimes I wonder if we should get a different councilor because of this but my DD really likes her, is comfortable talking to her, and the cognitive behavioral training seems to be going well.
I talked to my husband about telling her and he is completely on board with it. Now we are just waiting for the timing to be right. Probably tonight at dinner so that she can have our undivided attention to ask any questions she might have. I will let you all know how it goes. Wish me luck, I am a little nervous.
Sorry if that wasn't clear. Her therapist seems to skirt around the word aspergers when we are speaking in private. She has been officially diagnosed with it but when I am speaking with her councilor about her progress or something that I feel we need to work on she tends to only really use the word ADHD even when we are talking about aspects related to aspergers like socializing. I hope that revealing her diagnosis helps her therapist to be more effective. I think she is good but I think there is certainly room for improvement.
At five, most kids would respond to "I have aspergers" in one of two ways:
1. "Ok." (and then keep playing)
2. "What's that?"
Five is an age where a simple explaination is often enough to satisfy their curiosity. Some might ask more questions like "how did he get it" or other things along the same line. I think it would be helpful if you taught your son a response--even as simple as "I just learn things in a different way."