Spin-off #2 from Other people's kids...

[Plaid Dad]

If you have a child with an invisible disability, how and when do you disclose that to strangers who might be reacting badly to your child's behavior in public?

We are still waiting to get in to see an OT for a formal diagnosis for our dd (who almost certainly has SPD). We've disclosed the situation to adults she sees regularly, like the librarians and her swimming instructor. But what about the people who witness a meltdown and aren't able to see it for what it is because the underlying cause isn't readily apparent? When do you say something to them, if ever?

[JFS in IL]

blinders - when your child needs your full attention the other folks around do NOT exist. Yup - easier said than done. 2. Be prepared with a short statement for the folks who try and criticise you loudly or say they are calling the cops (etc.) that you child "has XYZ Syndrome. Sometimes this happens. Sorry if it bothers you." Then ignore them.

What I hate most are the folks who act like my son has RUINED their day/outing/whatever and how DARE my hubby or I have him out in public. NUTS TO THEM! Protected by federal law, my kid can go anywhere he pleases and most of the time is no more annoying/disruptive than the folks who play loud music/talk loudly on their cell phones/smell bad, etc. It is just a few minutes out of your day, folks. We LIVE with it 24/7. Why can't you guys notice the 95% of the time that my son is being good?


PS - might add - more often than not what we run into are folks who also have or know someone with a kid with a disability! I get more flak from folks my folks age - they grew up back in the day when kids with disabilities (hidden or obvious) where an embarrassment to be hidden away and NOT brought out in public! Now, THAT is (was?) sad!
JFS in IL
moderator, AutismNews (Illinois, private yahoo group) and former editor of the Brimstone Bulletin of the Mothers From Hell 2 ("fighting for disability rights - we will NOT be silenced!")

[PrairieAir]

This is a very good question to ask! I've been amazed at how many parents do not explain these things to others. I can understand that they might get tired of always explaining, but for people who might be working directly with your child, particularly teaching them, it is very helpful to know what they're going to be dealing with and how best to handle things. I taught several kids in our homeschool co-op who had a wide range of issues from autism (though not the type I was familiar with) to dyslexia, ADD, and a few others. Most of the parents did not bother to explain their child's needs to me. I did not find out exactly what was going on with the autistic child until after I had taught him for a full semester and finally asked someone else. I wasn't the only teacher who was wondering. I was always patient with the child because I figured *something* was going on there, but I would have liked the mom to sit down with me and give me a clue about what was going on and how I could best help her child.

My youngest ds had to have vision therapy when he was younger and still has some trouble occasionally. He was somewhat behind in reading and writing for a while. He is still catching up in spelling. I have always explained this to his teachers both at homeschool co-op and now at public school. I also made sure that adults who would be working with him in Cub Scouts and Young Marines knew so they would not put him in the awkward position of reading out loud or something similar before he was ready. I had told the middle school counselor when I enrolled him, but she hadn't communicated it further. When we sat down for the first parent teacher conference, his language arts teacher expressed some concern over his bizarre way of spelling words. I told her what I had told the counselor (and *that* I had told the counselor) and she was so extremely relieved. Just giving a reason for the problem and reassurance that we were continuing to work on it helped her immensely. He is continually improving and I expect some day he'll be caught up, though spelling will probably never come easily to him.

[chiguirre]

I always tell any adult that is going to be working with ds that's he's autistic, what his major problems are, some techniques to deal with the issues and my phone number (just in case). I also tell them that if he is being too disruptive to remove him from class (that's the best natural consequence for misbehaving). For short classes, I wait just in case there's a problem. For coop and summer camp they have my cell phone and, honestly, have only used it once when ds was sick. I haven't actually had that many problems with ds's activities. He's getting better at holding it together and behaving for outside activities and a lot of his teachers have known him for a while now, so there's less chance of a problem popping up that they can't deal with.

As ds gets older, telling people will be his call. I'm hoping that by the time he's in highschool he'll be able to self-advocate. For now though, I personally feel it's better to be upfront with people so that they can be prepared.

About total strangers staring (this happens much more with my oldest than with the hser), let them! If you're the most interesting thing in their day that's their problem not yours. If they SAY something obnoxious, give them your best withering look and snark away. Usually the big A word (autism!) will shut people up fast. I'm guessing SPD will too, if only because they don't have a clue what it means.

[Night Elf]

My son was diagnosed with Asperger's Syndrome at age 9. Until then, I knew something was going on but didn't have a name for it. I couldn't explain other than saying the obvious such as my son doesn't respond well to loud noises and crowds, doesn't like to do new things, etc. I got lots of parenting advice including things I thought were totally inappropriate. But I don't like confrontation so I'd just nod my head, say thanks, and try to vacate the premises ASAP.

Once my son was diagnosed, I learned that he considers his diagnosis a private issue. Before I talk to anyone about his AS, I ask his permission. There have been times when he did not want someone to know. I find other ways to deal with the situation to be respectful to him. He knows I talk about his AS online and he's okay with that because it isn't someone he sees face to face. Generally, if he's working with an adult in any way and his AS issues can be seen as problematic, he'll agree that letting them know is a good idea. But he doesn't like going into a group, maybe a homeschool park group, with us announcing his issues. He feels it automatically marks him as being weird. Of course he's been called a freak by kids who don't understand him but my son doesn't think neurotypical kids can understand how or why he's different.

[JFS in IL]

If you're the most interesting thing in their day that's their problem not yours.


Oh, so right! :001_smile:

[Closeacademy]

I'm still trying to figure this out. I never had my older dd diagnosed but we have our times where she still has meltdowns. She was a late-talker.

I usually try to keep her out of situations where they are likely to happen and if I see one coming on I get out of there so she can calm down and get re-centered.

But sometimes this doesn't happen and sometimes well-meaning people don't care that your child is not "perfect" and still tell you that they are being "disobedient" and that you should punish the child but don't listen to them--they are wrong.

I can tell you that you are not alone. That I have found that it is better to ignore the outsiders and just do what you need to do to make sure your dd knows that you love her and that she is still a treasure and to calm her down.

Good Luck!

[Whisperlily]

Once my son was diagnosed, I learned that he considers his diagnosis a private issue. Before I talk to anyone about his AS, I ask his permission. There have been times when he did not want someone to know. I find other ways to deal with the situation to be respectful to him.

:iagree: My son doesn't have the verbal skills to express this, but it's the same for him. He has ADHD/Sensory issues, and other things that we haven't "labeled." From the time he was younger, before we had an official diagnosis, I wanted to respect his privacy by not talking about his *flaws* openly to those we meet, or those who he has come to respect (teachers, etc.) In the PS setting, I have told his teachers... some were of great assistance in getting him some help he really needed, and helping us direct which areas to move forward.



But he doesn't like going into a group, maybe a homeschool park group, with us announcing his issues. He feels it automatically marks him as being weird. Of course he's been called a freak by kids who don't understand him but my son doesn't think neurotypical kids can understand how or why he's different.

Another voice of agreement here!

I feel that expressing these things openly, with a child who is able to understand or who WILL be able to understand when they are older, can be damaging to their self esteem. Just as with any other child, it can be embarrassing to have their "dirty laundry" or personal struggles aired to the general public.

About the question... what do you say to strangers about their behavior in public.

I don't.

Most of the time I'm so focused on trying to help the child cope/calm/process the situation that I'm purposefully oblivious to what others might think. I had to work hard in order to *stop caring* that others might make assumptions. Usually, if I am that involved in making sure my child is okay... rather than just trying to remove him for others' comfort, I get positive comments. (ETA: Sometimes the best thing for everyone is to remove the child from a situation... But some things are worth momentary discomfort for someone else when it means a gain in understanding and a second chance for my child.)

When I "react" by trying to calm the child for the purpose of creating a more comfortable environment for others, it usually backfires, lengthens the process, creates more of a scene, and usually shifts the focus to ME, and makes it appear as though it's more of a lack of self-discipline or lack of parenting on my part.

Stare away, people. If my child needs help learning to calm himself, or if he needs to be talked through each sound so he can assimilate it into some sort of order in his mind... I'm going to help him.

I will, in tight quarters, sometimes say something general... "All this sound/chaos is hard for him to handle." I leave it at that. ;)

[Robin Hood]

What is SPD? I tried to google it but there were a lot of names of those initials.

[Kay in Cal]

Sensory processing disorder.

[Lizzie in Ma]

By continuing to speak lovingly when my dd is having issues and speak reasonably and behave gently toward her I can only hope that, by my example, the people staring will be led.

If I were behaving as if I were exasperated, raising my voice, losing my temper or in any way implying that her behavior was a nuisance to me, her issues would look a lot more like a behavioral issue and a parenting issue to anyone watching.

[Robin Hood]

Thanks Kay. I think I may have to look into this.

[Kay in Cal]

With strangers in a public place, mostly I smile and deflect. "Kids... gotta love 'em!" or something like that. Friendliness and a "thanks for your patience" attitude generally work. Some people are obnoxious, and in extreme situations deflection doesn't work (and we've had those), but that's just life. I don't engage with every teacher about my son's issues. I do want him to be able to be "one of the kids" and take the discipline that all the kids receive. If it is an ongoing class I would have discussion, but for one class a week for a few weeks, I might not mention anything at all in advance. If his issues become disruptive, then I will speak to the teacher--but I'm more likely to approach the other parent (of whatever child he has annoyed) with an explanation.

Just as an aside: On Easter Sunday my son had to leave Sunday School because he was being disruptive. My dh went and took him out of class (because, ya know, I was preaching at the time). Of course all the teachers do know about his issues, but that doesn't mean they are always prepared to handle him on a bad day--which it was. So I was sad that Easter was tough, and dh had him sit out the egg hunt because he was behaving so badly. So screams and recriminations were echoing--inauspicious way to spend a joyful day.

We got home, and I got a call from my step-mom. She goes to a mega church in Tampa, and teaches a Sunday School class. A few minutes into class that morning, another teacher had come to get her (they have at least two teachers per group) because she "is so good with difficult children". A visiting little boy, Wesley, was acting out of control, having a hard time not touching other kids and objects, and also seemed very far ahead of the curriculum. She worked one on one with him, doing bible teaching, gently guiding him to better behavior as he wanted to grab and squeeze and hug her (another one of my ds' issues), and she had a wonderful time. So did he. They didn't have to go get his parents, they just made a special class for him. She told me that "God put her in the right place at the right time" because she is so in love with our special 6yo and knew just how to work with him. It was a great story, and I ended up wishing that someone in my own church would have the grace, patience and loving experience that my step mom does. Sigh.

[Whisperlily]

By continuing to speak lovingly when my dd is having issues and speak reasonably and behave gently toward her I can only hope that, by my example, the people staring will be led.

If I were behaving as if I were exasperated, raising my voice, losing my temper or in any way implying that her behavior was a nuisance to me, her issues would look a lot more like a behavioral issue and a parenting issue to anyone watching.


EXACTLY what I wanted to say. She's got it right there... nicely, concisely, and it's just the way I see it. ;)

[Laurie]

I'm basically a shy person who prefers to blend in rather than stand out. Sometimes I like to imagine that I could wear or dress my dc in some of the "T's with 'tude" for parents and children that I've seen on websites. Some of the sayings:

"Unless you have a child with autism keep your parenting advice to yourself."

"I have autism but I only suffer from the intolerance of others."

"It's okay. I think you're weird, too."

I've even seen little cards for parents to hand out to "spectators" at a meltdown with a brief explanation of autism.

But like I said, this strategy is outside my comfort level. I really wish that I could just not WANT to explain autism to people in public places.

I've offered books to family members/friends but only one has taken me up on the offer. (My brother finally borrowed a book on Asperger Syndrome when he had a student in his class with AS...not because he wanted to understand his own nephew better...) We also share the diagnosis with swimming teachers, dentist and assistants, etc. and they have all been so kind, caring, and helpful.

[Sebastian (a lady)]

Kay,
Our pastor's family includes one boy with obvious special needs (I think from substance abuse by his mother). But it is actually an older son with bipolar and drug abuse issues who has really honed this family. The pastor often speaks frankly about the issues they face and how he struggles to stay a loving father when he doesn't feel like it. A couple weeks ago, he mentioned how many other families they've been able to minister to who had similar issues and how he was finally glad to have the life experience to be sensitive and helpful.

[mommylaw]

Our four year old has fetal alcohol syndrome. We adopted him knowing of his mother's drug (meth) and drinking problems during her pregnancy.

According to the report she gave the hospital she drank 20+ glasses of vodka daily and lived in a house that "cooked" meth. It seems so grandiose that we have no idea if that is even possible (20 drinks daily) but nonetheless we knew he'd have issues. And he does.

For the most part Tommy is an absolute delight. Strangers LOVE him. The seniors on the swim team (high school aged) call him the pool stud. He's never met a stranger. He's delightful.

Occasionally, he melts down. Tommy also has no awareness of consequences which often causes a problem.

When he was very little I'd explain that he has fetal alcohol syndrome and then quickly announce that he's adopted. I didn't want anyone thinking I did this to him. Now that he's more aware I tend to not say anything.

I don't want to make him feel ashamed for being adopted. I don't want him to think we're ashamed to have him.

I don't really know what's the right thing to do/say to those who stare. It makes me very sad some days especially when I hear someone comment about him or my parenting under their breath.

[Janet in WA]

If you have a child with an invisible disability, how and when do you disclose that to strangers who might be reacting badly to your child's behavior in public? Never. At least never have. The only exception might have been the incident I described here a few weeks ago about how years ago our son with Asperger's had a meltdown in an arcade. As dh carried the kicking screaming child outside, police converged on him from all over because it looked for all the world like a kidnapping in progress. An explanation about Asperger's might have come in handy that day, although unfortunately, Asperger's hadn't been identified (at least publicly) back then.

[Jean in Newcastle]

People often stare because they are concerned and want to help in some way (or wonder if they should) not just because they are judging the child or parent. In my own case, I will often get out of the way as quickly as I can. I do that so that the person and their child can have privacy. And I do it because kids who are out of control for whatever reason can be a danger to myself and my kids. (having been attacked twice in my life in situations like this, I am simply stating a fact). And I do it because it is hard to have to listen to someone having a meltdown - when it is my own kids I have no choice of course, but it is hard to hear. So when my kids have had melt-downs I usually removed them as quickly as I could to somewhere more private - my car usually. If I saw a melt-down starting to happen I would intervene then - talking them through things. Often I would get strange looks and I know people often thought I was an overbearing mom but that's ok. I guess I have some of Peek's rhino skin!