Tuesday, January 08, 2008

Why I think "coming out" to other parents is a good thing to do, in certain circumstances

"Mom! Guess what happened today," Patience demanded as we returned home from school the other day.

"What's up?" I asked, panting more than a little, speed walking and jogging to keep up with her fast bike riding.

"My friend Emma* in gym class is gone again. They said she had to move away for a while. Can you believe that? She's gone again!" Patience told me, confusion and sadness ringing in her words.

I recalled the last time I had seen Emma. She and another girl were being silly with Patience and a few other kids at a school event a couple of months ago. My husband and I sat on the side and watched the children, noting Emma and another child in particular.

"I don't mean to sound rude," my husband had said back then, with more than a little hesitation and concern edging his voice, "But I think something might be going on with two of those kids. I'm not sure. I can't tell. I don't know."

And that's the thing. We don't know.

In general? It shouldn't matter---it doesn't matter.

And it isn't our business.

The rules---the basic rules---are the same in any case: treat others with kindness, courtesy and respect.

However, in this case, Patience had spent the entire year coming home with comments and questions about these two children. Patience and other kids do notice distinctions and differences in children. They know how most kids are, and they notice when a child is different. For example, in one class Patience attended, a child had some acting up issues. "None of us like that child," Patience told me, "He hits, and yells at us, and then he falls asleep in the corners."

All I had to go on were Patience's reports. So I told Patience to be kind, initially. I suggested that she invite the child to join in a game. When she followed my advice she said the boy simply hit her and ran away.

Now I was confused.

What to do next depended on more information than I had, so I had to go with my general advice which is to be polite, maintain her boundaries, ask the teacher for ideas of how to problem solve if necessary, and let me know if she feels like it is out of control. I spoke to the teacher who could say only that the boy had some fitting in challenges, but she said it with enough body language to convey a deeper issue.

I asked the teacher how she advised the children and she---a caring and good person who was a great teacher---said she couldn't call the children's attention to an issue another child had or make him stand out by instructing about special treatment. She simply had to handle in the moment as she would with any child, but admitted that with a good sized class and lots of responsibilities to every child, she was limited in what she could see at any given time.

I felt even more confused and frustrated after this. I knew the teacher and I were doing our best, and all that we could do, but I couldn't help but feel there was more we could and should do. I felt limited from that, which felt sad.

If the children knew something about their classmate's situation, and received good information and direction about the most likely successful ways to interact with their classmate, wouldn't that be better?

Instead, the standard operating procedure was to pretend all the children were equal and alike...even though these bright and observant children clearly saw a difference.

Through ignorance, our hands were tied.

I don't think a pretense of sameness created sameness or more tolerance.

It seemed to me---from my limited knowledge and experience---that it could be positive to casually say, "Johnny has autism, and he prefers you to sit quietly next to him and play at your own game. Mary, how do you like to play? Patience, how do you like to play?"

However, that didn't happen, so we didn't know. And without any additional information otherwise, Patience and the rest of the children thought the kid was "rude" or "a baby."

I could only reiterate to Patience that people are different, different is okay, and we all need to learn how to get along with differences---even if it means we are only polite and not friends.

This felt lame and vague and didn't at all answer her question, which was, "Why does he act like that? What's wrong with him?" She knew she was being evaded, and that frustrated us both.

I want to respect the family's privacy, but I'd also like to be able to help (if they need it). At the least, I'd like to be able to support their situation by helping my daughter understand enough to be a good friend or classmate.

I realize friendship shouldn't be contingent on full knowledge and disclosure, but sometimes, you can be a better friend when you understand. Also, it's enough of a challenge for adults, and these are little kids we're talking about here.

At the least, my daughter would like to understand why Emma comes and goes. She likes Emma, and considers Emma a friend. It's upsetting to her when Emma vanishes.

I realize my preference to know doesn't trump the family's right to privacy.

But sometimes I think we take privacy to a level that creates more trouble than openness and honesty might. At times it seems to imply a sort of shame, a lack of trust, or an inability to see the community you are a part of. At the end of the day, your children are part of a community, we are part of a community, and there is a level of care, even if it might masquerade as nosiness.

I completely believe there is good reason why families opt not to share. Sadly, I suspect they have had to deal with negative feedback or experiences, and I think we can all understand "once bitten, twice shy." I can imagine either experiential or imagined and anticipated anxiety about reactions, both of which lead to lack of trust. It's understandable. In fact, I hate to say, but I think it's valid, and to some degree, inevitable. There is a lot of ignorance we face at times.

But then there are the good people, and I hope I can usually count myself among them.

Whatever the story might be, I will do my best to try to understand and help my child to understand with openness and compassion.

It is most likely a case-by-case decision, but I also think that when a child's situation affects others, it can be necessary to share information.

A few weeks ago, Lori at Spinning Yellow wrote a post called "Coming out at the Bus Stop."

It was a great post about how and why she revealed her son's diagnosis to another parent at the bus stop:
After the boys boarded the bus, I decided to tell her more. . .I feel that I am usually trying desperately to make Scott's issues unnoticeable. For him to fit in with everyone, even if we see things others don't. But then there are times when I want people to understand where he is coming from.

. . .

But I felt better saying something. Even if it looks like I am making excuses or inventing a disorder. I want to raise awareness. Maybe this mom-at-the-bus-stop will see Scott a little bit differently, for good or for bad. Or maybe she'll realize something she never knew about another child. Maybe a niece or nephew or a friend of her son's.

Maybe it will simply be one more person who hears about SPD. And if that is all, it is enough for me.

She made me stop and think, and helped me to pull together not just an opinion, but a reason for my opinion. I acknowledge that I think there have been times a parent ought to have "come out" to me about his/her child, and I understand better why I think that...instead of attributing it to misplaced curiosity or something else really not defensible.

So I decided to come out with my own opinion, and ask parents to consider trusting other parents (sometimes), even if they are not friends or people you know well.

Let me share one more example.

My daughter invited a friend home for a playdate one time. The friend behaved in some ways that were scary and upsetting. If I had known what to do to prevent the problem or how to handle it, it might have gone much better. As it is, it went badly enough that my daughter decided she did not want to be friends or invite the girl over to our house ever again. Ugh, what a sad situation, a dilemma, and I don't have a clear or easy answer or solution for this.

What I do have is my own frustration about it, and a pretty good understanding of why my daughter feels as she does. I almost agree with her.

In fact, I felt sort of lied to, and betrayed.

I wish her mother, before dropping her at my house, had explained a few things to me first. Or stuck around for the first visit.

I understand the desire to not label, or preset judgment or so forth, or to allow the biggest chance at "normal" (whatever that is, if that is).

I also understand the desire for a break or shopping time.

But when a kid is in my house, I think I need to know if there is a condition that could cause a serious problem. I'd want to know about allergies, special conditions, sensitivities, or even big fears (such as fear of dogs, since I have one). Help me be a good hostess, enable me to succeed by trusting me with knowledge. If you trust me with your kid, you can trust me with relevant information about your kid.

I can imagine that dealing with special needs of any sort with a child is a difficult, complicated and emotional matter. I can understand that. I used to weigh in on the side of privacy, but a while back I read something that turned my feeling around, until it has landed here, like this, today.

The author of our autism book included a note at the beginning of her book. She wrote
Even more challenging are the incorrect assumptions, myths, and fear my son and I face with people out in the world. I wrote this book because I want to educate parents and children about what they are really seeing when they see my son, and to reassure them that he is, at heart, just a kid too. Not all children who have meltdowns in public are spoiled and undisciplined. Some have a pervasive developmental disorder, sensory integration disorder, or autism spectrum disorder.

Because of her book, but more because of her friendship and her ongoing honesty and sharing about raising a son with autism, I have a greater understanding and sensitivity. I do think twice and leave a question mark in my mind, rather than a judgment, when I see certain behavior from some children now. It's easy to say that we ought to not judge because we never can know, but it's much easier to not judge when, in general, we do know...because someone has shared enough with us that we can understand there are many more possibilities than we can, on our own, without education and information, imagine.

* Names and details have been changed.

Copyright 2007 Julie Pippert
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Jenny said...

As a teacher you've made me really think about how we deal with certain students. In my classroom, when I've had students with significant issues, I've asked their parents if they would like to talk to the class or if I can discuss this with the students. Children are very understanding, but they need to have the knowledge. Most families are willing to share at least something with their child's classmates. However, this has only been true for me for children with medical issues (cerebral palsy, Tourette's Syndrome, Aspergers, etc). Students with family issues or concerns fall in a different category for me. Your post has me questioning how I've dealt with these issues in the past.

As a parent, this really struck me: "If you trust me with your kid, you can trust me with relevant information about your kid." How true.

wheelsonthebus said...

I think you are right that good parents could help their children treat OTHER children better and relate to them better if they just knew what the heck was going on. However, I always fear that letting other parents know about Zachary's sensitivity and sensory issues will cause them to say inappropriate things to him. So, I guess my fear is that other parents may not be as concerned with teaching their children kindness as I am.

Julie Pippert said...

Jenny, thanks for commenting! You know, the medical issue thing is mostly what was in my mind. Personal issues, oh wow that's murkier.

What we don't know about Emma is whether she has a medical or personal issue.

I 100% agree with you about children capable of being understanding if they have knowledge.

Now you've got me thinking. :)

SciFi Dad said...

Sometimes, our society is too caught up in the belief that "knowledge is power", or more specifically, that if people know "too much" about us, it's a bad thing. (This is akin to your comments about excessive privacy.)

But at the same time, I can understand where these parents are coming from, in a number of ways. For one, they have to live with society's characterization of "Autistic" and what that means to them. So, that makes them uneasy about sharing the information with others. Just because you know (and you believe you portray this outwardly) that you are tolerant and understanding and caring doesn't mean they know this about you. In fact, if you could get to a point with this parent and ask them why they didn't share with you, they would probably say they were worried that you would cancel the playdate once you found out because of it.

Secondly, nobody wants to admit their child is imperfect (even though all of our children are), and so many live in a state of denial where they truly believe that if they ignore the symptoms the problem will solve itself.

This isn't to say they shouldn't share - I believe they should. But I just wanted to play devil's advocate a little.

le35 said...

I loved this post! I think that if people were more honest and open in general, we would all know that noone is perfect, and more people would stop expecting perfection or "normal" behaviors. We all have our own quirks. Whenever I leave my kids with someone, I try to tell them what they are allergic to or what they've been doing lately, so the person will have a head's up. When I pick my kids up, I want to know what happened while they were there. I do wish I knew what was up with certain kids sometimes.

Julie Pippert said...

Emily, I think that's a valid concern. In fact, as I said---VERY sadly---I think it's inevitable. Some people---too many---act like difference is some deadly contagious disease, and in their small-mindedness or awkwardness of what to do, they choose to avoid.

I have heard parents opting to avoid children or families who are different in some way.

Do you think there is a time to share?


SciFi Dad, be devil's advocate. :)

You're sharing a lot of the things I concede, and actually told myself for a long time when advocating privacy.

Your second point is a BIG one.

Let me play back a question or two to you (since you don't mind playing the other side):

1. Is my tolerance a MUST to share? It's ideal, it's preferable, and it's safer...all around better. But tolerance isn't everywhere 100% of the time. Must sharing be contingent upon the hoped for reception? KWIM?

2. What's your opinion (either side now) of *when* to and not to share?

Chris M said...

In the summer of 1991, I spent a summer working as a camp counselor for a twenty strong group of seven year olds. One of these kids had a problem where she would simply stop for seconds at a time. She would freeze up mid-conversation or in the middle of playing and a few seconds later she would continue on as if nothing had happened and would have no memory of the incident. Her parents patiently explained this to me and gave me permission to explain to all of the other children what was going on.

The girl's best friend was an immense help as she had known about it her whole life and treated it as normal. The children in the group, even the bully, were incredibly sensitive to the issue and never once brought it up or teased her about it. By explaining the situation, we were able to head off any fear or confusion. When the girl would freeze up and the other children showed concern for her, I was immensely proud of them. I was even more proud when she recovered and the children simply continued to play without drawing undue attention to the incident.

I think that children are remarkably perceptive and while they may not understand what is going on around them, they certainly notice it. By explaining a given situation carefully, we, as authority figures, prepare them for the future. While I understand the desire for privacy, I think that parents who attempt to shield their child are in fact calling attention to them and without the necessary information, other children will react in a negative manner.

Lori at Spinning Yellow said...

Thank you, Julie, for posting this! I agree, of course, and I think you fairly see both sides.

Not only have I been in the position of the parent with the child with issues who isn't sure whether I should say something, I have also had my son come home from school and say, "so and so cries all the time and won't play with anyone." or "so and so hits kids and growls at us."

To which, I have two opposing reactions: The first, old school, straight from my parents - don't play with so and so b/c you don't want to get into trouble or pick up new, undesirable behaviors.

The second, my new found understanding as a parent and particularly one of a child with misunderstood issues - can you ask the child or teacher how so and so wants to play (or not)? Maybe they don't like it when you sit so close, just the opposite of how you like to touch other kids.

Awareness and tolerance and maybe a little opening up, on all sides. Thanks for tackling this complex issue and opening up the discussion.

SciFi Dad said...

While I don't think tolerance is a requirement to sharing, I do believe it will facilitate the sharing process. If someone is known to be less tolerant, I highly doubt that someone is going to put their child through such an ordeal. In a perfect world, a "neutral" appearance (i.e. appearing neither overly tolerant or intolerant) would be met with an open mind from the parent with the special needs child. However, this world, as we all know, is not perfect, and people will tend to err on the side of caution when it comes to their kids. In short, if you're openly tolerant, you appear to be a more inviting host to other kids, which may ultimately encourage openness on the behalf of other parents.

As for when to share, I am a very open person, so my tendencies would be to be up front and honest from the get go. (I am so honest that during our first conversation I told my future wife stuff about my past that I KNEW she wouldn't like because I wanted her to know everything before moving forward... sort of a preemptive approach.) So maybe asking me that question isn't the best litmus test, you know?

thordora said...

As a mentally ill mother of two little girls who have the short stick of genetic inheritence (crazy on all sides sadly-bipolar and schizophrenia) I worry that I will need to be explaining for them in the future, that one of them will manifest symptoms and I will be expected to explain and explain to everyone.

Considering the often large and murky bias people hold against adults with mental illness, I worry that IF they are ill, they will be treated even worse. So I don't know if I'd "come out" about their disease. Many people aren't exactly rational about crazy, even now.

I'm sure I'm not the only mother who feels this way. I don't trust anyone, no matter how close I am to them, as I've been wounded in my own ways. No way in hell I'd open my children up to the same.

Karen said...

Julie- you make such a wise point here - we are a community and trust is vital to make us a functional one.

Kathryn said...

You make such a good point. Many of them, actually. I think people are generally good, and would step up to the plate (so to speak) and respond in kindness in most situations. Of course, it is easy for me to say. I can't imagine how difficult and scary it is for parents who just want to protect their children.
However, like you said, when I have a child over to my house, I would want to be given the opportunity to be a good hostess, and make everyone comfortable. I think it is NECESSARY to know all the info in that case. If the parent is comfortable enough to have you watch their child for a few hours they should be comfortable enough to trust you with this info.

Kyla said...

I always, always try to be upfront about KayTar's issues. It is a big part of who she is, why should I hide that? And I am a FIRM believer that labels are ONLY words that describe what is ALREADY HAPPENING. It doesn't create a problem to affix a name to it. It helps foster understanding for those who aren't already familiar.

It bothers me when people hide (or don't disclose) their children's struggles. It creates more problems and it makes it seem like a dirty secret, I think. Sure, when you are honest, you run the risk of someone unfairly judging you or your child, but do you really want to create a relationship with those people who would jump to those conclusions? Challenges are almost always recognizable, whether you speak them out loud or not, differences are DIFFERENCES. They stick out. Not mentioning them creates confusion and there it sits like a big elephant in the room (or classroom).

thailandchani said...

You're right on all counts.They call it "mainstreaming", don't they? And it is such a disservice to parents and kids, especially those who are different. It sets the kids up for failure because there are certain standards that their learning disability, condition, autism, whatever, won't allow them to meet.

Sometimes I wonder why it is that so many find differences frightening.

That's at the root of it, I think.

Mary G said...

What a great post! And what excellent comments. You really do pick some hard questions -- and deal with them with a sensitivity and intelligence beyond most.

My granddaughter has a potentially life threatening nut allergy. She wears a bracelet and an epipen and there is no question about telling about it. Also, very few people would judge her negatively because of it. That's one end of the spectrum. The other is the gamut of behavioural problems where we are just coming out of the dark ages when people were judged bad or wrong for having them. There is still a huge stigma around mental illnesses of all kinds, and that's sad.
I used to be part of a puppet troupe called 'Kids on the Block' where we took puppets with various handicaps to schools and the kids could ask them questions about the handicap. A non threatening way to get information out. My puppet had cerebral palsy. The kids asked interesting questions, such as 'is your head inside twisted too?' You can see that a kid with CP would have a hard time with that kind of curiosity.

I think each situation has its own parameters. I am all for disclosure myself, so that I can help, and all for working toward a world where mental illness is given the same acceptance as appendicitis. It's how to get there without hurting the kids more. I'm with Kathryn on this one. Good point!

I've coopted your comments again. You do that to me. Thanks, Julie!

mommybytes.com said...

I absolutely agree that tolerance and understanding is based on knowledge and ignorance breeds hostility. This goes for learning disabilities as well as race and religion. Unfortunately, even though these parents may come out to the school and the teachers, the teachers must maintain privacy when dealing with other parents. We've dealt with a situation in preschool where one boy kept thinking that our son was his best friend, but kept accidentally hurting him (where first aid was required). The school would only tell us that there were "learning issues" with this boy. But without any further information we could not advise our son other than to ask him to stay away from this boy to avoid getting hurt. If we were told more about the condition and how to best handle it, we could've taken a kinder route.

Erin - ExpectingExecutive said...

"We make fun of what we don't understand." Children are especially prone to this behavior. It is incumbant upon a parent(s) to help their child learn coping mechanisms for dealing with their peers. "Special needs" or not.

Every child and adult will face obstacles at one time or another...physical, societal or personal. Children may go through messy divorces, parental ailments, financial difficulties, abuse, neglect, and the list goes on and on. As a community, I believe that there is a certain amount of obligation to respect other people's difficulties and reach out to provide assistance to the extent of one's comfort level. I firmly believe that it is a parent's responsibility to provide that awareness (disclosure) of difficulty to the community when it best serves the child. We do not live in a vacuum, we live in a community and what affects one will affect all...whether or not we would prefer otherwise.

Bon said...

it's so hard. i've experienced this more as a teacher and friend than as a parent, b/c my child is still too young for it to have arisen extensively, but the uses of labelling vs. the stigmas of labelling - and the hurt and frustration that occur on both sides of that decision are things i'm well aware of and yet need reminding of nonetheless. so much depends on each instance, on the manifestation of issues and the context - and on whether the situation is one where "playing differently" with a kid can make a big difference to how his or her behaviour is received and accepted by other kids. it's still a very big risk for parents to take on behalf of their children, particularly parents who've been wounded by absence of understanding in their own pasts...and yet heartbreaking when the lack of disclosure leads to problems that might otherwise have been averted or incorporated into something positive.

sigh. i will say that i see a great deal more acceptance - peer acceptance and parental acceptance - of kids with autism these days, compared to when i did special ed training back in '93. i think this is perhaps a positive move - and one that counters (and isn't helped) by the pretense that we are all the same. all worthy, yes. i hope we keep moving towards teaching that. but real acceptance of difference does start in the acknowledgement of it, in the openness to appreciating it.

Yolanda said...

This post has a deep correlation to a (rather lengthy) article I read in Brain, Child yesterday. But I think hat you, and many of your readers (especially any dealing with neurological differences) would enjoy the multiple perspectives the author provides.

URL: http://www.brainchildmag.com/essays/winter2008_guilbert.asp

Laura said...

Thank you for making me stop and think...thank you for sharing and making me more aware of this everyday issue and concern.

Emily said...

"I realize friendship shouldn't be contingent on full knowledge and disclosure, but sometimes, you can be a better friend when you understand."

I think I'll print that out and put it on my fridge. We all need to remember that!

When a new family moved onto our street this summer, the neighborhood kids (including my 2 daughters) welcomed the brothers into the fold and began running through the neighborhood with them as if they'd always been there. The kids noticed some differences in that first week and began to distance themselves. By the 2nd week, there were some disturbing behavioral patterns that surfaced with the older of the two boys. (Inappropriate sexual behavior directed at several of the children.) As a mom, my first reaction was to be really angry at the kid. Later we found out he has "milder" autism. I wish his parents would have been forthright with his issues, and then we as parents would be able to equip our children with the tools they need to understand and be a safe friend for him. As it is, our kids avoid him because they are afraid of him. A very frustrating situation.

I'm off to check out the article in Brain Child recommended above.

we_be_toys said...

Really good thought-provoking post! I agree with you 100%. As a parent volunteer in three elementary classes I see kids who obviously have either behavioral, chemical, or enviromental issues going on that keep them from doing their best, and there is very little being done for these kids, within the school system, and maybe not even at home. I will be sure to do some follow up reading based on your reccomendations!

slouching mom said...


I agree with the sentiment behind this, and if I were a teacher, I'd like to be able to share relevant information with a parent like you: intuitive, bright, and empathetic.

But the problem is that not all parents will use the information they receive in wise or understanding ways. In fact, I'd suspect that some parents might use the information in cruel and potentially devastating ways and end up hurting the child in question more than he or she was hurting before.

Julie Pippert said...

SM, yes. You're right. And some people are like that. And will do that. And it sucks.


Okay yes but. Then there is what Kyla said.


In general...to add on to my point...

I'm not sure how to make this point I'm about to try to make so bear with me. AHEM

There's is the nasty twist to the idea of "free to be you and me." That's meant to promote acceptance and tolerance. And there's long been the debate about "is it intolerant to not tolerate intolerance?" As in: isn't that hypocritical?

I disagree with that idea and find it off-base.

I feel disgust each time people use the idea of freedom to excuse hatefulness.

"It's my right," says the jerk, "To tell my kid to avoid the Retard. 'Tards shouldn't be in school so I told my kid if the 'Tard bothers him? Just push him away and call him a 'Tard."

I don't think that ought to be tolerated. At all.

Our culture and our school culture need to abhor that, and it needs to bring negative consequences.

No part of anything in this country provides people the right to harm others. (Not that you'd know that <--had to get in one dig.)

It's like Medium and Large laughing at Small in my post from Sunday.

I so wanted one of them to say, "Dude, I'm no fan of that school but that comment is past the line."

I guess I'm trying to say...why do bullies and jerks get to rule the day?

(That's an honest question. I realize it hurts, and I know you have to wisely choose your battles. I understand some people won't intend kindness because they erroneously believe some difference gives them the right to treat others as less than human. I hate that, I do. I also realize that when you are already fighting a battle on one front, the last thing you want is to put energy into another front. Still...it just seems like there is a big Should in there somewhere. Does the jerk weigh more?)

Julie Pippert said...

We be toys, well, then there is that other level of concern.

Take public school. With 20-25 kids in a classroom, are the special needs students getting the education and support they need?

Are the TEACHERS getting the support they need?

Mainstreaming used to work really well in most cases before budget cuts.

Back then classrooms with mainstreamed kids had an aide.

The aides, it seems, are gone. And class sizes are larger.

How does this work for the kids and the teachers?

It's interesting to hear about the changes from a teacher's POV over a 30 year period of time.

Julie Pippert said...

Thordora, okay mental illness...that's a different discussion.

You are right; the bias against that---the misinformation, ignorance, unintentional assumptions that are harmful and so forth---is rampant.

How much does/would it manifest on a daily basis in the classroom?

When can we begin thinking about mental illness the exact same way we do about physical illness? The brain is an organ of the body. We don't completely control it. When it malfunctions, that's not a choice---it's a disease.


Thanks for the other comments. I want to reply more but have to dash out again. You guys have made some great points.

It's such a complicated issue.

ewe are here said...

Fascinating post ... and comments. It leaves me torn...

On the one hand, I agree you need to 'know' what's going on when there appears to be a child with a problem and your kids are struggling to cope with said child (along with everybody else). On the other hand, I can understand why parents of children with 'problems' don't want to discuss, out of fear of labels, out of fear of even more ridicule/teasing...

It's also why I personally believe mainstreaming a lot of children has been such an abject failure for all concerned. There has to be a better way to teach children in regular classes tolerence and kindness to those who are 'different' without inserting children who are different and will struggle mightily acadmically/socially to get along into the same room on a fulltime basis. It just seems so unfair to everyone involved.

niobe said...

Of course, you're right that we could act with greater sensitivity and understanding if we had full knowledge of the situation. But I think that many people don't feel comfortable sharing some things about their lives even with their close friends.

I know that I wouldn't disclose, unless I thought that, on balance, weighing the costs against the benefits, the disclosure would result in a net gain in some way for my child. And I can understand that, for many parents, the costs or potential costs would far outweigh any benefits.

Mary-LUE said...

I agree with what you say in this post, Julie, not just as regards children but just in general.

I wish we could be more open while at the same time having a strong sense of personal boundaries. For me it is about perspective--framing things in a way that is not an excuse but instead is supporting and enlightening.

Of course, I know that people who are in the type of situation you describe have probably been hurt or are scared. I don't want to sound cavalier that I know what someone else should do. I know that I have been afraid, too, of asking questions, the wrong questions, etc.

It is a tough place to be in, on both sides of the issue.

Wayfarer Scientista said...

Good post Julie. I have to agree with Chani that this comes down to some basic fear in our society of being different. I also think that the superficial level that many in our society communicate makes people afraid to deal with things that are unpleasant or emotional. But really admitting that these things exist can make it much easier for everyone.

Professor J said...

You are wise and thoughtful. I appreciate your post, and I think we could all benefit from more openness and less tolerance of intolerance.

Multi-tasking Mommy said...

As a former Kindergarten teacher, this post really hits close to home for me. I feel very sad for Emma and for the children in her class. I can understand the confusion that her classmates must feel about this child who often acts different and "disappears". I truly believe that being open and honest is the right thing to do. I don't believe that privacy is necessarily the issue. One cannot hide a child's differences and it is doing that child a disservice if they are trying to hide them. Rather, we should explain them and embrace them. Help the other children understand that Emma has "xyz" and what that means. It helps the children understand and accept differences rather than simply ignore them. How will children ever learn how to accept differences and learn to find ways to get along with these children?
In my school, I was the designated "special needs" Kindergarten teacher--meaning that any child who had special needs would be placed in my class--amongst the "main stream" children as well. There were times when I had to explain to the class about someone's needs to help them not be scared and to understand how the child had difficulties. We brainstormed as a class how we could help that child and ways that we could solve certain problems (I am thinking of a child who go particularly violent and lashed out). After these discussions, I noticed such a HUGE difference with how ACCEPTED that child was in the classroom and how the children weren't scared of being around him.
Oh, I could go on.....

ALM said...

It's sad, because the best way to become comfortable with something/someone is to learn about them. And for a child, having that sense of other... with nothing concrete to pin to it.. will just make them shy away.
My brother has Down's Syndrome.. and I remember all through growing up kids staring at him & my dad or mom explaining that he learns slower, but he's the same... And I remember doing the same with my friends when they came over. And they were all comfortable with him.

When he worked at a fast food restaurant after graduation, and the other employees there teased him (high school kids...) my Dad went in & spoke to them. Told them about Downs. Unfortunately, you can't expect kids to be naturally kind with something or somebody that is different or scary to them. But talking about it, opening it up, creating a dialogue is power.

Gwen said...

I think everyone else has said great things, but what strikes me is how aware you, as a parent, or your child, or any of us, even are of "difference." I wonder if perhaps sometimes our expectations for what "normal" is aren't themselves unrealistic. Maybe it has to do with wanting to believe that we and our children fall within the realm of "normal." I don't know. I just know that in my children's (very nice) school, I see kids at all different levels, emotionally, academically, socially. I am learning that children develop at very different rates, all within the realm of "normal." So I'm not sure even the ones who seem to be acting out necessarily deserve the labels we sometimes want to attach to them,as a way to make sense of their behavior.

I don't know exactly how to explain myself without unwittingly being insulting. Perhaps, then, I should just stop.

anne said...

What a great post - very insightful.

There really isn't much I can add to all the wonderful comments above, save for one thing - What if we took this approach with everyone, not just children? We can plainly see how important it is to understand the needs and circumstances of a child. What if we were THAT understanding of everyone whose paths we crossed each day - paying attention to the needs of each other? What if we REALLY paid attention?

Thank you for an eye-opener.

melissa said...

Great post!

My kids have had lots of "mainstreamed" kids in their classes, from muscular dsytrophy to autism spectrum. The mom of the MD kid makes a presentation to the class each year so that everyone understands her issues. The autism mom, unfortunately, has a chip on her shoulder the size of Mt. McKinley and insists that her daughter be treated Just Like Everyone Else. The fact that she doesn't bring everyone into the loop has been really hard for everyone.

Very thought provoking. Thanks!

painted maypole said...

wonderful, wonderful. I so agree. thank you.

Oh, The Joys said...

What a great post. You've made me think and presented fairly on both sides, I think... hmmmm.

Gwen said...

You know, along these lines, I was watching Frontline on PBS last night (what? I'm a dork?) and it was about the controversy surrounding diagnosing and treating psychiatric disorders in children. It was incredibly thought-provoking and heart-rending and fascinating, all at the same time. Good stuff.

Michele said...

My brother, who is a professor at a university, was recently observing one of his student teachers in an elementary school classroom. There was apparently one boy who was austistic and my brother said it was amazing how the rest of the class interacted with him. They all knew he had autism and instead of being afraid of or ignoring him, they all worked with what they had. When the boy freaked out because something had fallen on the floor, another student picked it up for him. My brother said it was like they all knew what to expect from him and helped him get through it. I thought it was a really interesting method ... and this was in Arkansas so it can happen there, it can happen in any school system : )

letter9 said...

I think you're totally right here: "It seemed to me---from my limited knowledge and experience---that it could be positive to casually say, "Johnny has autism, and he prefers you to sit quietly next to him and play at your own game. Mary, how do you like to play? Patience, how do you like to play?""

From a teacher's perspective, though, it can be really hard. I believe that public school teachers do know when a particular student has, say, an IEP, but I don't know that the teacher necessarily even knows what disorder or sensitivities the child has. I think that teachers are really left in the dark, in part to "assure" equal treatment. But you're right, for some children, the best thing would be for everyone to just learn rather than to ignore.

Cathy said...

I totally get what you're saying.

What's frustrated me most about my stepson's situation is my husband's unwillingness to be honest with our friends about what's going on. These are people who care about us, people who would be supportive and understanding, but ...

Lawyer Mama said...

I think I agree, although it's easy for me to say when we don't have any serious issues with the kids (yet). I tend to think that, although some people might act badly, most people would appreciate the knowledge and act accordingly. And, hey, then you know who to avoid.