Advertising Your Kid's Diagnosis

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My daughter has been diagnosed with ADHD impulsive/hyperactive and sensory issues recently. I know it's not autism directly but she does have traits so I keep ending up on these discussion boards. She is on the slight side of a diagnosis however and the majority of the time noone would ever think anything was different. The times things come up are when someone bugs her about sucking her thumb, or in large social situations, then things go a bit wonky.
We engage in many many activities together. She is also in quite a few social-focused groups. Here is my question - how can you determine if you need to advertise her diagnosis or not?
She has been in various summer camps and I always write it on the paperwork, but sometimes say nothing directly. It hasn't seemed a huge issue, but there have been a couple times things came up and I needed to discuss things with the counsellors.
What I wonder about now is our newest registration for girl guides,she did it last year no diagnosis and noone asked me anything, but we joined near the end of the year, the sessions are less than 1 hour and she can manage groups in shorter periods.
I actually thought that most people would be less inclined to let her join if they knew she had a diagnosis, but it actually seems they give her a bit of special treatment at first that lets her transition in easier. However, she is getting older and kids are starting to notice if she gets special treatment and it can lead to envy and problems with making new friendships. How do you know when you should make more of an issue of a diagnosis or not?
I guess it's not typical to have as many groups as we do, I'm somewhat obsessed with structured activities and it really plays into ADHD management, plus it gives me a bit of breathing space, I don't realize how much of my day is spent focusing on one person!

I think there is a reasonable argument for caretakers of your children to know.

My daughter has just received a diagnosis of Aspergers. At one point, I thought she may get a diagnosis of mild ADHD, so that gives you an idea of the sort of behaviour she presents with.

Over the past couple of years (while she has been recognised as needing to be assessed, then going through the assessment process), I have sometimes told class coaches/teachers about her. It's usually just a little mention of how she sometimes goes off and does her own thing and then comes back. I tell them just to leave her be, she's not in a mood, etc. That's all that's really required. The teachers usually have experience of kids with special needs and it never appears to phase them. The one time I never said anything to a teacher, there was a minor problem. My daughter's swimming teacher had changed and, although I had spoked to previous teachers, it wasn't in writing and the info wasn't passed on to the next one. As there had been no issues which the teachers had felt the need to tell me about, I thought it would be OK this time to not bother saying anything at all. However, she got her 8 week report and there was a mention of her 'needing to learn to listen to instruction'. I felt sad for my daughter, because this is one of the things that she deals with all the time and the teacher, not knowing that she had difficulty in that area, was probably getting angry with her.

So from now on, I've decided it's best to be up front. She has a diagnosis now, which should make it easier. But, I don't know if it does. Every child is unique, so I still feel like I have to spell out her specific issues.

In addition to ticking the box on the form, I will usually say something like, "He flaps his hands, bangs his head and pulls his hair. These are normal behaviours for him and are not signs of distress or anxiety."

If I leave my child in someone else's care, then I have a duty to ensure that they are informed about him.

I always struggle with what is the right thing to do. My son is almost 11 and carries ADHD and NVLD diagnoses and my daughter is almost 7 and carries ASD diagnosis. My son is more "impaired" than my daughter. I would say he is noticeably different to more observers, whereas my daughter can pass in many environments. Both of them are "mild" in the big scheme of things, though...both mainstreamed in school, etc.

It seems like whenever I have decided not to tell, I have always gone back later and told, but I do not remember any time in which I have told and regretted it in the long run. I oftentimes worry about people expecting too little of them or treating them in a manner that does not match their capabilities, but generally once they get to know them, that initial "hesitancy" seems to wear off. My kids are both capable and before long, most people realize this. But telling them usually ends up being a good thing because if it is a long term kind of situation, eventually the underlying neurology will show through and something will happen that if the person did not know, they'd be sitting there scratching their head, whereas when they know, they just kind of say "Oh! Now I see it!" For example this summer at summer camp, my daughter slapped a child over a lego that he took away from her (he was 5) and she didn't recover the whole day. First of all, slapping is very uncharacteristic of her and second of all, to be withdrawn for the rest of the day is unusual for a kid her age. The particular counselor who was working with her that day was *not* informed of her diagnosis (not happy about that) and was clearly concerned and confused about what happened, but after we discussed it, she totally realized that she should have been monitoring the disagreement more closely and facilitating more and that people should have given my daughter more space afterward (they were trying to engage her way too frequently, the stress of which probably kept her shut down longer). After that incident, there were no more incidents because they kept a closer eye on her and facilitated a little more quickly.

This is the long winded way of saying that it seems to me that if it is a 1 time meeting and I will be around, there is no reason to go into it. But if it will be a long term relationship, or I may not be there, it has been beneficial to let people know. I usually add "s/he is very mild and you may not even notice anything at all. I just tell you because every once in awhile, s/he will do something that will seem out of character and I want you to understand what might be going on."

I would want the leaders, coaches etc... to know but if you feel that the extra attention is making your daughter feel uncomfortable you could also mention how she is really trying to develop those social skills and that she would not want to be openly or obviously treated differently. They hopefully will try to be discreet, not that it's something to be hidden but understandably kids are often sensitive about being seen as different.

I tell people. Most of the time she seems ok and quirky, but normal. Problem is if she starts having issues, they need to know. Otherwise the resonse might be to just assume that the child is poorly behaved and ill disciplined. This is what happened in the pre school my daughter got kicked out of. I didn't really know there was anything amiss other than that she was bright and odd. But when she started pre-k, the structure got to her (she had previously been in a play based daycare). She had violent fits, beat up other kids, screamed, yelled, hurt herself, and had a lot of other strange behavior. I knew then that something was not right. I asked the preschool to be patient while we took her for assessments, but they werent even when we said it might be aspergers they said "that doesn't exist, it's just an excuse for lazy parents" and then they kicked her out. Over all a terrible experience. Anyway, knowing how she CAN be in some settings (she is similar at swim class) I tell anyone who might have to teach or care for her.

I got my first phone call from the elementary school prinicpal yesterday (a whole 5 days in to kindergarten) that was basically a "whoa, ok, we see it now, lets get that IEP rolling shall we?"

Most recently I decided to enroll her in girl scouts (As a daisy) and I decided to colunteer to be troop leader, it's just going to be easier since I would have stuck around every meeting anyway (and they needed a troop leader anyway).

<rubbing my eyes, blinking rapidly, shaking my head, surely must have misread> wha...Wha...WHAT????!?!??! !?!? Are you *kidding* me? I am not one to hop on board the legal route train, but I think I would have had to in that instance. Sorry you had to deal with that. They should be ashamed of themselves.

For us, it varies. DS is fully capable of masking his symptoms and appearing to be only slightly "quirky." This can work two ways - because if he gets into a situation he can't handle, he melts down like a nuclear core. OTOH, there are lots of situations where people come up to me and tell me how wonderful and charming and polite he is - which he is, but only because he is FOLLOWING EVERY SINGLE RULE HE KNOWS AND COPYING EVERYBODY WITH ALL THE STRENGTH OF EVERY ATOM OF HIS BEING.

So, this makes disclosure challenging: do I let people believe he is charming (which I so want to do, but which leaves him incredibly vulnerable if things don't go well) or do I make them start out thinking he's weird in which case the charmingness doesn't seem so charming. Horrible choice.

I do different things depending on the situation. If it's another parent and he's not likely to have more than a day's worth of contact, I might say nothing, as long as I feel confident he won't run into situations he can't handle (like going to hang out at someone's house.)

If it's someone who has a long-term relationship with him, like a teacher, etc., I usually explain his needs. Unfortunately, most people don't believe me until he actually falls apart, which inevitably happens about halfway through the school year.

I also told DS that it's his diagnosis, and his choice to disclose or not to disclose when it comes to peer relationships. He has been pretty mature about managing this: he told his classmates the year of his diagnosis, and has told a few friends, and left it at that. I am not sure how well this will work with other kids, but it works for us. I think the timing of this is important: other families have told me that telling their peers doesn't work as well during middle school.

In the Parenting Index, there is a collection of threads on disclosure, so you can read up on other parents' experiences.

It was pretty clear they just didn't want to deal with it. I don't have proof, that was a verbal exchange. In her "disenrollment" letter it just listed all of her "infractions". It was a private preschool, they're under no obligation to keep her. I think they really wanted her out before she got an official dx so they wouldn't have to deal with her special needs. Honestly, I don't want her to be somewhere she isn't welcome anyway. She said that the teacher would allow the other children to pick on her and make fun of her. Not cool.

I don't know why some people become teachers, except to have their summers off.

Thanks all for the good feedback. For clarity, I definitely feel a need to tell people at school or camps. In the summer camps I've always written it down but not necessarily stressed it to the summer counsellors (they tend to be young so not really experienced with what may happen with a special needs kids, however I am impressed with the training they get on it these days before they are allowed to be counsellors)

I was just thinking maybe I wouldn't stress it for Girl Guides this year, but it's an hour long and I don't want to hang around in the room, so it would probably be best to talk with the counsellor. Not that I don't like doing stuff, but I don't get any parenting time off unless it's to go to work so activities are my breathing room time.

My daughter doesn't know what her diagnosis is/means, I've tried discussing ii with her because she says she feels she is different than the other kids, but she's like "Mommmmm...this is borrrrring can I go listen to Justin Beiber now?" and when we get to the tenth or so repetition of this I let her. One day we will have a more in depth convo about it.

CWA - I had a similar situation. Daycare started my investigation into the mental health region. I went back to school, moved to the city and put her in a full day daycare. It was inexpensive, and they said they were a montessori school. I trucked along for 2 years thinking she was doing great - I got these report cards about how intelligent and great she was with her peers. Two years later I get a note saying "Your daughter is violent, we are afraid for the other kids. You have 1 week to find somewhere else."<-- paraphrased but definitely very similar. When I read this the leader of the daycare agency (she had a few in town) came for a meeting and she told me that I either had to take her out then or I could put her in another of her locations and see if that helped. I didn't have anyone else to help me so I was thinking and then she said "Some kids never grow up. If you treat them like a baby at home they stay that way" <--not paraphrased as this is burned into my head. I removed her that day, had I not been finishing my final term at school we would have been totally sunk. I put her in public school at that point as she was able to go to JK and we started down a very rocky couple of kindergarten years.

I am not Buddhist or Hindu, but people like this make me hope there is such a thing as Karma. WTH?

Well there may have been some kind of karma. I called the licensing agency and made a complaint and I think they had a visit. Then I went to any daycare review place they were posted and posted facts about my experience with them. Other parents have posted negative reviews also since then. There were suddenly a number of surprisingly positive reviews until the website removed about half and replaced them with "Duplicate positive review removed". So I imagine her business was hurt. I mean at the time I knew nothing about mental health, but you can't just say that to someone about their kid...any kid. I am glad my daughter did not have a lot of contact with that woman - she only was there on paycheck day, but I really regret she was anywhere near her...ever.

Good for you.

I am learning that what happened to us at our elementary school happened to many other parents and kids, but most just removed their child from the school without saying anything. When they do hear something, people think it's just a few isolated incidents and don't realize how many kids are being denied needed services and accommodations across our district.

I considerred doing this (And still may), but to their credit (I suppose) they never hid her actions from me. They always told me. She was only there about 3 or 4 months total so at least they were more or less honest albeit total insensitive idiots when it comes to things like autism. The worst part is that there is a really nice preschool/daycare/before and after care (primrose school) going in right next to our house. We want to put the kids there becuase it would save us 2hrs a day commute and let us spend more time with the kids. Unfortunately is is highly structured like the one dd got kicked out of. I have a meeting with the owner and the K teacher next week to see if we can work on a plan to accomodate my daughter. I figure the fact that the owner realizes that autism exists is a good start...