its own reward

 

The phrase “peer mentoring” has always bothered me when applied to typically developing kids (or adults) and their differently-abled same-aged peers. The first definition that comes up for mentor is “verb – advise or train (someone, esp. a younger colleague).”  A mentor and his or her mentee are not really considered equals, but teachers and protégées. That, to me, is illustrative of this whole idea that our kids are “included” but still not yet viewed as whole, equally contributing members of their communities.

From my response to a comment last week on The In Between

-

“You know, baby,” I said, “you will have a richer life than most people on this planet.”

She asked what I meant.

“Katie, your life will be so full because you are willing to SEE people. You want to meet them, know them, play with them, understand them, share joy with them. Your life will be full of people who not everyone was willing to take the time to get to know. And it will be immeasurably richer for their presence. You have a lot to look forward to. You are a very lucky girl.”

From A Gift Given Twice, February, 2011

-

October, 2013

Luau and I sat down with Katie’s teacher for our very first middle school parent-teacher conference. As we were finishing up, she said, “Oh gosh, and it’s just so nice that she spends time with Jane. She’ll even choose her as a work partner. She’s so good with her. You’ve got a really sweet kid there.”

I wanted to scream.

-

Last week, a friend reached out to me and a couple of other mamas. She needed to process something. Normally one of the most composed people I know, she was clearly rattled. She’d just come from a meeting at which her son’s teacher had said that they’d rewarded one of his classmates for … talking to him.

-

There’s something that I need to say. I’ve shouted it from rooftops and splashed it on billboards. I’ve screamed it from mountain to mountain and listened to its echo into the valleys below. But I think it’s time now to say it softly, quietly, slowly. To say it in a way that will convey its gravity. Because nothing less than my child’s place in the world depends on it.

Eustacia Cutler famously said of her daughter, Temple, she is different, not less. No child, no human being, no matter how different, is less. Ever.

When we set up these paradigms in which children are told (or shown) that their disabled peers are protégées to be mentored, in which we pat them on the head for being friends with a kid who is different from themselves or, dear God, reward them for talking to another kid, we ensure that there’s not a chance in Hell that our children will ever be thought of as equals.

No one has ever told me that it was really sweet that someone was friendly to Katie. Or given a reward to a kid who talked to her in class. And no one is ever going to. Because the assumption is that, as a bright, outgoing, typical kid, she’s worth being nice to.

When Katie’s teacher said that it was “so nice” that Katie spent time with Jane, all that I could muster was, “They’ve been friends for years,” but the truth was just that. Katie and Jane were, and are, friends. Jane may have some pretty pronounced differences, but .. well, there’s no but. Their relationship is as reciprocal as any other. Katie gets just as much out of it as she puts in. Because that’s how friendship works. Katie loves that Jane sees the world a little differently. Jane probably likes the fact that in some ways, Katie does too. Their friendship is its own reward.

When we send the message to typical kids that talking to a child with special needs is some grand act of charity, we tell them that the intrinsic reward of their friendship isn’t enough to make the effort worthwhile. When we tell them that they are so sweet to spend time with someone, the implication is that they are giving more than they could possibly get in return. That they are acting as a friend out of the goodness of their hearts rather than being a friend to someone who is perfectly capable of being a friend in return.

I don’t want to discourage anyone from encouraging interaction. I really don’t. I’m not sticking my head in the sand and claiming that there’s no gulf between those with differences and those without. There is. And it has to change. Yesterday. So maybe rewarding kids for doing the right thing and for being good friends to each other is the answer, but if that’s the route we’re taking, we have to make sure that we’re doing it consistently for ALL kids.

Because I am scared to death of the message that it sends to our differently-abled children when we act as if they are recipients of charity rather than, well, kids. Kids who are, in more ways than not, just like everyone else. Kids who can, in their own ways, give just as much as they get. Kids who may be different, but who we cannot keep calling, whether it be by word or by deed, less.

 

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36 thoughts on “its own reward

  1. Yes yes yes.
    It’s one thing to create social opportunities for my child to interact with other kids (all other kids) but it’s not okay to reward a child for talking to mine or being his friend.

  2. I wholeheartedly agree. My son doesn’t need charity. He needs real friends who want to be with him and appreciate him for him…not because he is a little different.

  3. Can I also suggest parents think carefully before they casually refer to NT kids who are “nice” to (or just tolerate) our kids as “friends”. I used to do this, too, when my ds was little. “Say bye to your friends!” as I picked him up from kindergarten. I guess I hoped if I used the word, it would happen.

    Then I heard the story of “friend” becoming a trigger word for an autistic pre-teen, because after years of teachers and adults calling these NT kids his “friends” (who were actually unkind to him at times), he didn’t want “friends” anymore and was afraid of them.

    I love this part of the post:

    “So maybe rewarding kids for doing the right thing and for being good friends to each other is the answer, but if that’s the route we’re taking, we have to make sure that we’re doing it consistently for ALL kids.”

    Yes!

    Amanda

  4. As I get ready for cymbie’s Iep tomorrow, these words will resonate in my head. We’ve been talking about “typical peer interaction”, her need to work on social skills, and spending some time of her school day in an inclusive setting, so she has that opportunity. Thanks for writing this today.

  5. The flip side is that I somehow need to be grateful if people spend time with me or say something nice to me because it makes them feel good about themselves. I don’t want to be friends with someone like that. But if I turn away from a person who treats me like their charity project, I have “bad social skills” or I’m “off in my own world” or “not interacting properly”.

    That’s not the way friendship works.

    Katie is awesome for having that bit all figured out. Let’s hope the rest of the world can see it too, one day.

    • I don’t know how to not be friends with someone who talks to me. I do not know how to be nice to someone but not be friends. I do not know how to not be friends and not become friends with someone who is in the same vicinity of me and who talks to me.

      That is why I became roommates with my college roommate for 2 years, even when I knew before we decided to move in together that it was probably going to be a mess, because I did not know how to not be friends with her, no matter how much I wanted to.

      Just because someone spends time with me, I feel obligated to become their friend.

      • In the same way, I don’t know how to extricate myself from conversations. I don’t know how not to be nice about it. Men chatting me up, little old ladies at the bus stop (had one of those again yesterday). Don’t get me wrong, I do like talking with people, but I don’t have the social skills to make it clear that the conversation is now over without being rude. So I’m nice, and that means I’m stuck there for hours, quietly sobbing inside my head.

      • Oh gosh yes. When it comes to like, same-age peers and adults, I’m basically about as manipulable as silly-putty. I get so overwhelmed with them talking to me that I’ll say “Yes, sure.” to just about anything, just to get them to stop. Things I’ve done because I didn’t know how to not be nice/friends: being roommates, tutoring everyone, letting people stay with me, giving them my food, giving them money, buying something I don’t need, not buying something I do need…Those are just the less embarrassing things. Like…unintended credit cards and the taking off of clothes have also ensued. Eugh.

        autisticook– Yeah, I have the same problem with the nice old ladies at the bus stop. The only thing I’ve been able to figure out how to extricate myself from are people with petitions/proselytizers on the street corner. I figured out that if I point in the direction I’m walking and say “I’m going to be late for a class/bus” and then run, I can get away. That’s basically the extent of my repertoire right now. That and being so awkward that people stop talking to me.

    • in a recent conversation with dreamy (brooke’s neuropsych), he said, “there are more and more katies in the world every day. they’ll find brooke. and she’ll know them instinctively when she sees them.”

      i have to believe that. xoxo

  6. This. Yes. Thanks for giving voice to why I blanch at all the “feel good” stories of special needs kids being invited to the prom, or being made part of the team, etc. It’s not true inclusion or friendship, and our kids deserve nothing less.

    • and it’s so hard to explain that without sounding “ungrateful.” the kindness is wonderful, it just shouldn’t have to be wrapped in charity. when it is, it widens the very gulf that the very well intended action was meant to bridge.

  7. This is exactly why I have mixed feelings about my son’s school’s LINKS group. There are NT kids in the group who are like Katie, who get it, who actually SEE the other kids. Then there are those who treat the ASD kids like pets. I haven’t said anything to the social worker who runs the LINKS group. Mostly because I don’t know what to say. I know it’s hard to get some of the ASD kids to engage with the LINKS kids but some of the things they do seem to reinforce the situation you describe. I see it as being a good Samaritan rather than a good friend.

    My son has not sought out friendships. He stopped wanting to have birthday parties 3 years ago. He has mentioned that he doesn’t have any friends. But he still calls the kids in the ged ed class his “6th grade friends”. Because that’s what the teachers call them. But my feeling is that there is only 1 or 2 kids who actually ask my kid about DDR, Baby Einstein or Diary of a Wimpy Kid. Who talk to him like he’s 11 and not 4. And because he is 11, he knows the other kids aren’t really his friends.

    Where we live middle school starts in 7th grade, so we are making that transition right along with you.

    • my heart aches with all of this. brooke has yet to make the distinction, or rather, she’s yet to express that she’s made it. but it’s clear as day from the outside when the girls she refers to as her friends are running away from her, pointing and laughing, that they are not friends. it’s so damn hard.

  8. I am in a progressive, highly coveted school district.

    But, oh boy do I understand this!! Last year for English class my NT son was required to respond to this prompt: “Your athletic, most popular boy in high school has asked a girl with Down’s Syndrome to the high school prom. He could date any girl he wants but he invites her. What do you say to your son? ”

    Wrong and gratuitous in so many ways that I won’t even begin to enumerate them.
    Get this – it was a prompt given during National Autism week! Needless to say that assignment wasn’t done and I convinced the Principal that it should be eliminated.

    It’s suffocatingly painful for me when I hear a parent tell their NT child to , “Say hello to _________ .” If it is my sense that the request is gratuitous and a “character building” experience for the other child, I do not/will not prompt my child to respond back. I will not allow her struggles to become a teaching opportunity – rather, a “leadership” opportunity for another child. I’m in a community where it is all about posturing your child for success. My dd has enough to deal with. I’m not going to set her up to not trust her own judgement. If she doesn’t want to say hello that is fine with me.

    Do I sound a bit bitter:)

  9. I think this is such an important post…because spectrum kids can have a very hard time advocating for themselves. It’s gotta be the adults who speak up when something is off, not rooted in genuine respect.

    I know when I was a kid…had something like peer mentoring existed, I would have loved any chance to experience friendship. This is just me, but I don’t believe I would have been able to distinguish true friendship from the kind of hollow, empty friendship created by these mentoring programs. It’s hard enough to make social connections, so these sorts of fake connections would have been very confusing for me. In other words, I agree with the concerns here…and as a kid, I would not have been able to advocate for myself, point out the problems with these sorts of interactions.

    And it’s hard to say, “Appreciate the thought behind this, but no…it creates a dynamic that is not truly beneficial for the autistic child.” So thank you for these insights, much to think about here.

  10. I feel sometimes like I’m always the ‘yes, but…’ person. So, not to break a trend:

    YES. Last week in a conversation with my son’s art teacher, she talked about how helpful a boy next to him had been with making sure my son was keeping up with the instructions and such. So much so that she’d made that boy Student of the Month. It bugged me and I couldn’t quite figure out why, until just now. Why was the other kid given the accolades, when it’s MY kid who has to work so hard TO keep up? Why is that effort less? I think it’s MORE.

    BUT. It is difficult, if you are a neurotypical child who does NOT get to see ‘difference’ in practice at home, to be my child’s friend. Because his reactions can be off-putting. Because the way he sometimes behaves is contrary to what you (as an NT kid) would consider appropriate or even friend-welcoming behavior; in fact, it’s the kind of behavior that you would have learned from your time with your peers so far to be antisocial or sending a clear ‘go away’ message (he won’t look at you, he turns away when you approach, he won’t speak when you talk to him, he needs to have everything HIS way, etc) and so you’d assume he doesn’t want to be your friend. He does things that might freak you (or gross you) out a bit. And even if you try, he doesn’t quickly reciprocate any friendly move you might make towards him.

    Why, then, given a room FULL of kids who WANT to be your friend, should you the NT deliberately pick to play with the one who seems least interested in you? Normally, there’s a social incentive/payoff when you try to befriend a child, and if you don’t get that payoff (smiles, a warm feeling, interaction, whatever), and you haven’t been taught how to look for a different kind of reaction/payoff, you decide that you don’t want to be that child’s friend. With my kid, the payoff is (or usually is) not there. In fact, a child who is sensitive to social nuances would actually get the message that my kid does NOT WANT to be friends, when that is likely the opposite of what he wants. So to get others to give him a chance, there does seem to need to be some kind of external incentive. And then, in theory, once they’ve gotten to know him, they’ll realize there’s more going on beneath the surface and want to spend more time with him. (That hasn’t worked so much in practice with most NT kids, but, you know…in THEORY it should. Sigh.)

    I’m really mostly playing devil’s advocate above, but it makes me feel badly sometimes to be so negative about the way NT kids treat my kid. Katie and my older daughter and kids like them get natural, daily training in how to spot and respond to differences in social interaction, so that it becomes second nature. Would Katie be Jane’s friend had Brooke never been born? I don’t think my daughter would have been the way she is without my N. The other kids don’t get that training, and yet we expect them to have a level of empathy that ignores ‘normal’ social cues, talking about them like they’re little monsters when they don’t embrace our kids…and even when they do, but don’t do it in the way we’d like them to. I’m not sure that’s fair. Even though I do it all the time. ;-p

    So what’s the answer? “Mentoring” programs? I…don’t know. It might be better than the alternative. But, really, this is again why I’m now so skeptical about mainstreaming/inclusion. Because really what seems to work is when our kids are in with their REAL peers. OR, rather, when our kids are not in a major minority in a classroom, and thus have the option of finding true friends among their neurological peers if they don’t see them among their neurotypical peers.

    Sorry for going on so long and still not saying much of anything. But clearly, I needed to say it to myself, at least.

    • “And then, in theory, once they’ve gotten to know him, they’ll realize there’s more going on beneath the surface and want to spend more time with him. (That hasn’t worked so much in practice with most NT kids, but, you know…in THEORY it should. Sigh.)”
      - So true for us, as well. Double sigh.

      “Because really what seems to work is when our kids are in with their REAL peers. OR, rather, when our kids are not in a major minority in a classroom, and thus have the option of finding true friends among their neurological peers if they don’t see them among their neurotypical peers.”
      - Oh, I’m totally stealing “neurological peers”.

      Lots to think about, here. This stuff is hard.

    • Love. How many times will a NT child approach my daughter when she does not respond (2 or 3)? How many times does my daughter need to be around someone before she is comfortable enough to play with them (5 or 6)? Without prompting and education, for both groups, friendships will be hard to reach. The thought behind the peer mentoring programs is to educate and prompt more interaction. That is what my daughter needs – give her some time and you will see how amazing and wonderful she is – but unfortunately some NT people don’t wait around to see this. I think most peer mentoring groups are started with good intentions – but are structured or approached wrong.

    • you said a lot, and i get it. completely. it’s hard. and it does take extra effort to get to know our kids. but it’s worth that effort. THEY are worth that effort.

      i think (i don’t know, but this is what i believe) that the answers lie in educating children about the value of each other’s differences early and reinforcing it often. i believe it lies in talking about (and practicing) different kinds of communication and not just telling but showing our kids that one method s no more or less valid than another. i believe it lies in modeling respect and showing kids every day what it looks like to treat everyone as an equal. i believe it lies in teaching children to hold space with each other – to acknowledge one another’s humanity, with or without words. i believe it lies in gentle guidance and facilitation when necessary – “joey doesn’t always respond the way that you might expect him to. let’s talk about why and what to do when his response is surprising.” it’s taken me years of studying and loving my girl to understand the best ways to interact with her. i can’t expect another child to somehow intuitively know. so it lies in talking openly about how to adapt our expectations and styles of communication to others. it lies in teaching our kids, all of our kids, to be good friends to everyone.

      • Yes! Early and often, modeling, guiding! I work one-on-one in early elementary and I see firsthand the difference this strategy makes. Sometimes I feel like I am fighting for my student to have a more-than-physical place in her own classroom. Down the hall, in the class with a teacher who “gets” our kids? Everyone is included and celebrated, the NT kids are great to their (not autistic, but differently-abled) peers, and we all benefit.

  11. Oh dear, all children need to learn how to make friends, and it is something all children learn from the time they are very little. Children with autism need to learn how to make friends also, children with autism often yearn to learn how to make friends, but we as adults don’t really know how to guide them in developing these skills.
    Friendships usually start with group inclusion, where everyone in the group is an equal member of the group. It can be a girl scout group, it can be a class room, it can be a team, it can be any kind of group. Group inclusion, group membership is foundational to making friends, and to being part of the community.
    I find that with children with autism, we skip over the group membership part, and go right to the friend part. The children are not seen as part of the group but someone peripheral who needs special treatment, and not reciprocal friendship, but some kind of manufactured thing. All children deserve to choose their friends from a pool of people, after they have chosen their friends, the other people become classmates, team mates, acquaintances, neighbors, etc. All children need this safety net of many relationships. That is what group inclusion gives us.
    I know that we can help kids learn the skills to join groups, to contribute to groups, and to welcome others into their groups. All kids. That is what we as adults need to be teaching all kids: how to join and how to welcome.

  12. Thank you, Jess. As always, food for thought. I think as educators we feel that we a responsibility to foster social connections for our kiddos who struggle in this area, but we need to make sure that while we are doing so we are encouraging true friendships and ALWAYS respecting the value of every student involved. I do like the concept of peer buddies better than peer mentors because it is designed to suggest that while one student may be able to help another out with remembering the classroom rules, for example the other most definitely has something to teach them whether it is about their special interest area, art, music, being a good friend, etc. The point is that everyone always has something of value to offer.

  13. Oh, this. I have so many things I want to say about this, because it’s so damn important:

    1. While it’s totally true that it’s a sign of good character for a NT child to resist conforming to social expectations with regard to a disabled peer, it’s just that: a sign of good character. You don’t reward kids for showing good character, because that gives other kids the impression that showing good character is something “extra”–i.e. that being a dick is neutral, and being nice is something that involves going above and beyond.

    2. Yes, we do give awards for kids who show exceptional dedication to helping and understanding their peers, but that involves “peers” plural, generally. There should be no award for “helping out the disabled kid”–if that kid is only being nice to the disabled kid, that’s usually a sign that, you know, they like being nice to that one disabled kid. If we’re giving out awards for kids’ effort at understanding and being nice to peers that are different from them, we should be giving those awards to kids in underserved and minority groups; disabled students, students of color, low-income students, queer students, trans students, and so on. They spend much more time working to understand and be kind to people who don’t understand them and their experiences than most typical/white/affluent/straight/cis students ever do.

    3. Giving kids awards and special recognition for being nice to autistic kids sends like the worst, worst message to them about their value as a person. Trust me, I had a lot of actual, kind, reciprocally-grateful mentor-y relationships in school with older kids who looked out for me…and I still have trouble not assuming that I’m a worthless, annoying, selfish person that nobody would ever voluntarily spend time with. I mean, god almighty, the last thing you want to teach impressionable, young autistic kids is that they owe other people something just for hanging out with them. Quite frankly, that kind of thinking leads to abusive relationships in adolescence and adulthood. I hate to be the person to say it, but it needs to be said: It’s not that long a walk from giving a “normal” elementary-school kid praise and a special award for talking to their autistic classmate, to a “normal” (or otherwise) adolescent/adult deciding that they’re owed some “compensation” just for hanging out/going on a date/being in a relationship with an autistic person.

    4. Is this just me, or is peer mentoring normally supposed to happen between older students (mentors) and younger students (mentees)? This is how it was always done at the schools/groups I was in, and it worked wayyyyy better. I feel like having kids in the same class-group “mentoring” each other is a recipe for social disaster.

    • That is how our peer mentoring/buddies was always done. They changed it up a couple times but it was always age-dependent. Which was nice when I was younger, but admittedly did get more difficult as I got old enough that I was the older one in the relationship. (Luckily, it was usually some sort-of-structured activity, so there were guidelines and it was safe.) We also had (mandatory) peer mentoring in high school, but that was just a mess, because of a whole bunch of structural things, especially as we got to junior and senior year and it was people our age mentoring us. But this was always mentorship in general directed to the school as a whole since I was floating along quietly undiagnosed for most of my formal education.

      I have had teachers intentionally put the nicer kids near me, or in groups with me, which was always good. Because it is good to be around the people who are decent human beings. And even more than that, though, there are some people who are just incredibly gifted and able to make everyone feel comfortable and included. Just genuinely nice people. And it is always lovely to talk to them, or to be grouped with them, when you are a quiet strange kid.

      ~~~

      Also, Jess, thank you for this because this is important. Because it means my friends are my friends because they also get something out of the relationship. So it is not one-sided and just out of niceness.

      Because that is what I am always afraid of. And I think it is important that that gets started now. So more people don’t get afraid that their friends are only their friends because they are being nice.

      I don’t think I am saying it well at all, here, because words today.

      But thank you because this is important.

  14. We had my son’s IEP meeting last week. One comment that really rankled was when the teacher mentioned that my DS doesn’t understand friendship at the level of his NT peers. He is in first grade and she mentioned that to him, friendship is still stuck at preschool level. She mentioned that there is a new boy in the classroom and he calls my DS talks about him as his new friend, yet the boy does not reciprocate. It saddens me that at 7 there is already starting to be a divide. My son mentions one particular girl on a regular basis. When she sees him she runs up to him and hugs him, and vice-versa. At class parties she mothers over him. My son appreciates her friendship, I just worry at how this relationship and others like it will change through time.

  15. I have been agonizing over this for months, trying to formulate what it is I am looking for from my student, her teacher, and her peers. Some days I think I’d settle for someone talking to her, talking to her as a sentient human being, regardless of their motivation. She could give out the sticker charts herself!

  16. This harkens me back to when my son was in elementary school. At an IEP meeting, the teacher and speech therapist were taken aback when I balked at my son picking out a popsicle stick every morning which would have any of the kids’ names from his class on it. He was then supposed to strike up a conversation with them. First of all, as an NT person, I don’t think I would like to walk into work every morning and have to randomly get a name of someone I have to go have a conversation with…and if I have issues with said skills that would help me lead a conversation, this would be terrifying! Um, at the very least, how about we have him pick the pool of kids that are the names on the popsicle sticks, huh?

    Then, a year or two later, the teacher called me and proceeded to tell me about an incident my son had with a girl who sat next to him. The teacher was in a tizzy about how he yelled at the girl “when she was just trying to HELP him!” I asked what happened, and the teacher clearly was only seeing it from the helpful, girl perspective. She could not understand that he was frustrated with all the *help* the girl was giving him.

    I, also, have had a hard time with all the “look at that prom queen taking the *insert disability here* kid to the dance”. But haven’t always had the words to explain it. This discussion has helped so much.

    As always, thanks, Jess!

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