"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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