SN - to tell or not to tell?

[Anonymous]

I posted on another thread wondering about SN children. I am genuinely curious. If your child has SN, do you tell people? Or at what point do you tell others? I am wondering because I have seen times when SN was obvious, and instances when SN is not so obvious. I feel I could better deal with a situation or better communicate with a certain child if I knew the diagnosis. I am not claiming to be a doctor or specialist.

To be specific, I have seen some pretty outrageous behavior on play dates. I am left thinking - if it was my child, I would want the adult with whom my child is in care to know as much as possible so my child can be safe/adequately cared for. I feel as if this might be a piece of the puzzle that should not be. Although perhaps if I am enlightened, I may think otherwise. I would hate to exclude a child I might find challenging by not having the full picture.

It is difficult to have play dates without the parents of certain children present, as I seem to be surprised by behaviors I know little if anything about. Sometimes I just don't feel equipped to handle a situation that arises with a child that is clearly different. This has happened on a few occasions with the same child, and it can be quite scary. Without getting into detail, their safety could have very well been in jeopardy. I felt the parents should have somehow warned me. Again, in the interest of the safety of their own child. [In the case I am mentioning, sadly, it seems the parents could not wait to be away from their DC].

Is there a reason you would not divulge your child's SN? Especially if you know the family fairly well?

I appreciate any positive input. I feel like I don't have the tools I need to fully understand.

[Anonymous]

You sound like you're piece of work yourself.

[Anonymous]

20:20 - most helpful. How typical.

[Anonymous]

I have this issue and I don't really tell people unless a. I am very close to them and I trust that they are not going to run around the school and report it to anyone else and b. I trust that they will actually "work" with my child if she happens to be at their house. But mostly, I don't tell people and I make sure Playdates are at my house so I can manage the situation. Sorry for the rude responder.

[Anonymous]

How typical of what? Not the PP but the way you wrote your post sounds quite provocative.

How do you arrange your playdates that you know nothing about the child or the parents? I am pretty open about kids' SN, and I will typically tell other parents fairly early on that they are SN. But because they are high functioning many parents give me an even more puzzled look as though I must be out of my mind - until my kids exibit "strange" behaviors. It's a fine line between letting your SN kids be "normal" and ensuring everyone's safety. I let caretakers now right away because they need to be equipped with strategies that work for my kids and that may not be intuitive. I have never not been around on playdates (which we have not had very often, so I wonder how often my warning parents backfired) and I watch my kids like a hawk.

[Anonymous]

I usually divulge when something happens that makes it clear my child is different and I feel that I need to explain why.

In my experience people don't divulge for various reasons: no diagnosis, embarassment, denial, etc.

[Anonymous]

I rarely, if ever, discuss my child's SN "status" with parents of other kids on playdates. I frankly think it's no one's damn business, and the last thing my child needs is to be stigmatized or excluded on that basis. However, that being said, I am always present for playdates and my child doesn't do anything destructive to himself or others. You shouldn't assume that it's easy for all parents to openly share their child's diagnosis. It is a significant piece of very private and personal health information and not always appropriately shared with casual acquanitances/parents of classmates. Posts such as OPs sound very insensitive to me because of the apparent disregard for this fact. Parents and SN kids struggle enough without having to feel compelled to explain away any differences. And frankly, I've seen plenty of "typical" children whose behavior sucks, and no one seems to require a warning ahead of time about that.

[IansRecovery]

Denial can play a huge role. Perhaps the parents are hoping to God that their child one day grows out of it and, maybe, if they just ignore it, it will go away. Not everyone who HAS a SN child is ready to be a parent of a SN kid. There are soooo many kids who fly under the radar of any defined diagnosis, although there is obviously something wrong.

Tough call, OP...really. It could be that they just aren't willing to admit that their child is really that different. Or maybe they know and don't want the child to be treated differently because of any diagnosis.

For my child, no admission necessary....it's obvious. But my neighbor is in this situation where she has a diagnosis, but her child is social, has friends, gets very good grades in school, but has obsessive/compulsive quirks. She often wonders who she should tell or not tell, but doesn't want the diagnosis spread around so that event he kids know. That would just be unfair to the kid, especially if his peers were to find out the label.

[Anonymous]

I'm very open about my DD's issues. This may sound odd, but I don't want other parents to notice her quirks and wonder/worry if she has a condition that I'm unaware of. I make it clear that I know exactly what's going on with my DD and I'm on top of it. My DD is high functioning but it doesn't take long to see that she is a bit different from her peers and not nearly as verbal, especially on a one-on-one playdates. Somehow I feel less awkward if everything is out in the open. Now, if I discover that DD is no longer invited on playdates or is left out of activities as a result (as PP indicated), then I would reconsider.

[Anonymous]

DS has ADHD and anxiety. The anxiety in particular is noticeable because it makes him very shy/noncommunicative at times and in certain situations. He's made a lot of strides. We have told good friends over time but don't tell everyone - even neighbors. DS in most cases now plays fine with kids and his main issues are academic (he has LDs as well). This is a good thread and is making me think. My spouse is more private about this stuff than I would be, so there's a lot of balancing. Bottom line is that DS functions well in most situations. I can see situations down the road where we will have to disclose more - if he goes to a friend for a sleepover, for example, we'd have to send medication...

[Anonymous]

I'm honestly confused about what your needs are, OP.

Many special needs kids don't have a diagnosis. They and their parents have gone through years of testing and have yet to know or understand what the exact diagnosis is. So it would be hard for me to walk through the door of a playdate and tell you in one minute about my daughter's "status."

I also think that discussing my daughter's medical history in front of her and her playmate is really kind of weird and puts her and her playmate in the position of medicalizing their interaction.

Finally, my daughter is healthy as a horse. Her special needs don't make her medically fragile. She's not going to collapse during a playdate. Why should I walk into a playdate and have to give you a rundown of her medical history? Why do you need to know? Really, aren't you just curious?

[Anonymous]

I actually think that this is a very good question, which I appreciate. Personally I feel that being open and clear is best for all, and I wish more people agreed. I think that MOST people DO inform others of their childrens' sn if there is a medical necessity or if the special need is immediately apparent. My kids do not fall into either category, though their special needs are not mild either. I generally prefer to disclose anyway because I think that people's understanding could bring empathy and would help.

Still, I do not always disclose all information beforehand because, to be honest with you, people are rarely interested. You would think that they would be either out of curiosity or even for their own sake but, in my experience, they don't want to be weighed down with other people's problems and they tend to be suspicious of diagnoses and terms that are not obvious to them. A typical response I get from parents is, "Oh my kid is JUST like that," which I realize they say in an attempt to make me feel better (all kids act weird, etc), so it doesn't make me angry to hear it. But as soon as I get that I know that they are not believing what I am saying and are therefore going to be unprepared for certain behaviors and, worse, do nothing to avoid them. And sure enough, when my kid shows behavior that I previously warned about, it gets treated like misbehavior, I get treated like a bad parent, my child gets treated like a spoiled brat.

Maybe this doesn't make sense without disclosing some of my kids' issues so as an example I'll say that one my kids suffers from, among other problems, severe generalized anxiety. It would be easier if he looked like a cute, blushing shy kid in a corner, but that is not how it manifests itself. Even people who know everything--for example, the extended family--do nothing to help him prepare for troubling situations, or avoid getting overwhelmed, and absolutely typically respond as though certain behaviors are defiance on his part. Let me tell you that, with someone who suffers from anxiety, being pressured and scolded does not help... neither in the long nor short run.

Moreover, I have been told repeatedly by family members and have read repeatedly on the General Forum that people shouldn't pathologize their kids' differences. My family adores my kids and want what's best for them. I happen to think that they are wrong and contributing to the problem. In sum, most people--even close friends and family--do not want to hear about it.

I could go on and on about this topic because it is a real struggle for me. I am not ashamed of my kids' issues and I want to help them as much as possible. It is a disappointment to me that most people don't particularly want to participate in the process.

[Anonymous]

I tend to disclose the specifics, but not the generalities. Or, to put it differently, specific issues which might arise in that situation but not details of diagnosis, treatment, or nonrelated behaviors, unless it is in further discussion. So I might say, "DS is a pretty anxious kid and might get upset if he thinks I will be late, so please reassure him, and I'll call if I'm really delayed" or "DS is phobic about bugs, but fine if he just moves away from the bug", but not "DS has a generalized anxiety disorder, medication and therapy are helping but we're not there yet". I want other parents to have the tools they need to deal with things which are likely to arise.

[Anonymous]

Thanks, 9:16, you stated very well what I feel about disclosing my kids SNs.

[Anonymous]

9:34 - OP here. This is what I am referring to. I don't need the child's medical records for a play date, just a general heads up about "Johnny might (this) or (that)" so when he gets into a physically compromising position (read: truly dangerous, which has happened), my family will know how to tactfully handle the situation and not be caught off guard with no way to keep "Johnny" safe (literally, safe from hurting himself or others). It is a situation that is not obvious when you see "Johnny"; but comes out when "Johnny" is upset. There is no way of knowing what makes "Johnny" upset.

There has been an instance where it seems easier not to have the child at our house because we were given no information and the parents do not participate in the play date, but seem to constantly look for ways to get away from the situation.

Writing this, I see I may come across as judging, which I do not intend to do. It must be really overwhelming at times, I am trying to get it.
But I would think more support would be in place than ostracism, if something (NOT everything) were divulged. Otherwise, (as in the case I mentioned), it becomes "the family with the (negative here) child, and the family is hands off, so we may as well stay away from them because it is just too much work." I don't want it to be that way.

There has not really been defensive comments, which I would have expected, to hinder the situation and make it more complicated and isolating for the child. I am thankful for that.

Thank you for your tremendous insight and feedback. As I said, I am trying to get it. Keep it coming.