But What if Your Kid Can Pass?

I'm going to be writing about BlogHer 08 and our panel (Blogging About Our Children With Special Needs) for a while. They were that good.

There were several omissions in my initial panel write up, as I was relying on my cross-wired brain rather than notes. So, please know that CalifMom and Karianna talked about their children's challenges in "typical" classrooms, and I responded (though my response was cut short, because the session was too short). Here's all of what I wanted to say:

How do we help our kids navigate an environment where teachers, parents, and students have little knowledge of or compassion for their needs? Especially when our children look and most of the time act like the other kids? What do we do when our children's behaviors create difficulties, how do we promote understanding about behaviors that our children themselves are still learning to manage and accept?

Ideally, we should all feel like we can be honest and straightforward about our children's needs. We should do our best to foster an inclusive environment with the adults, and with other students. If we encounter resistance, we should redouble our efforts, thicken our skin, announce our pride in our wonderful children, and do our best to educate everyone at the school about the ways our children *are* typical as well as the ways in which they are not.

The number of kids who need accommodation even though they're in regular classrooms (and the number of parents who approach me, in confidence, for advice) is much higher than most would know, because parents do not want their children singled out. I understand this. Protecting Our Children is gut-level parenting reaction #1. But in my opinion, it can get in the way of accepting, and helping other people accept, kids who quirk. And shielding those kids now certainly won't make their lives easier if they become quirky adults.

You may think it's easy for me to write this when my son is not going to be "passing" anywhere, any time soon. I'm not the one shoving my kid into an potentially unfriendly educational spotlight. But I used to*. Leelo used to pass, or at least get a pass, when he was in preschool. So I know that in reality, it's fucking hard to be the one pointing out how your kid is different from the rest of the herd, when you just want him to BE one of the herd, be accepted without question by the herd.

But Leelo and I don't have to deal with any of those social school issues right now, and in some ways, it's a relief. I do not envy families with kids who still go to regular schools, especially with older children, increasingly savvy children. If the school has not encouraged inclusive attitudes at the teacher, parent, and student level, higher grade students can be increasingly uncomfortable or even cruel. My heart aches for the family of any child who faces casual or pointed ignorance, every school day.

I think families and whose kids deal with special needs in regular school environments have it much harder than Leelo and I do, in our happy County special ed bubble.

Please do what you can to promote inclusive environments. Please do what you can to help people see that our kids are just KIDS.


*Leelo attended a regular co-op nursery school. It was the most supportive environment imaginable. I was very open about his autism and his aide, and was available if the kids or parents had any questions. Supervisor M gave the class a puppet show about inclusion, asking the kids how they would feel in various scenarios that emulated Leelo's sensory needs. The teacher openly talked about Leelo to the other parents and children, who like Leelo were Mali's age -- three years old. Too little to be truly cruel.

But they still got that Leelo was different, and he still never once got invited over for a playdate. I worked in the classroom, I knew those kids and families and watched them connect while Leelo was left out. It sucked. But I wanted Leelo to be around typical kids, to learn something about how "typical" kids function socially, so I stuck it out.

The next year, Leelo was in a special autism kindergarten on an otherwise regular elementary campus. There were no efforts made towards any kind of inclusion, except tossing him and his classmates into the standard kindergarten recess. This was great until Leelo got away from his aide and pushed a little girl into her teacher, who fell down.

The girls' parents were outraged that "kids like that" were allowed to intermingle with their precious lamb, and demanded that Leelo be removed from recess. The principal and Leelo's teacher agreed. And then they informed me. I was not allowed to contest their decision (I did not have the same knowledge of inclusion and Leelo's rights, then).

Leelo had his very own special, solitary recess for the rest of the year. Which is particularly interesting when you consider that a similar incident between two boys the previous year had resulted in the kid who got pushed hitting his head on the asphalt and needing stitches. That was chalked up to "boys being boys," and neither was removed from recess. Even more interesting is that the kid on the receiving end had Tourette's.

After that experience, and because the class was not right for him either, I am quite happy to have Leelo at a segregated special ed school where everyone understands him. But this means I am leaving the real inclusion work, the fight on the street, to others.

I know you can do it. And I'll be back here at headquarters, gathering your ammunition.

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  1. Thank you for your eloquent inclusion of the difficulties faced by children in the mainstream, whether public or private classrooms, or out in the world. As you eluded, I would no sooner keep my child's race a secret than his special needs. Everything about our children is a part of the whole. You remind us that advocating can be uncomfortable, but it is so very necessary if we want to see change and acceptance for our children.

  2. Yes, honesty usually is the best policy, but I am still in that tissue-paper state where I fear that people's expectations of a particular label blind them to the actual kid in front of them.

    (So on one hand I blog about it to show "hey, this is a pretty 'normal' kid who just has some freak-out days" but then I realize I'm "outing" him to those who find the blog who otherwise wouldn't have known about the label.)

    My own super-sensitive reactions to things and quirks jumble the mess a bit too, I admit.

    But I've had some great email conversations and brainstorms since the panel which have really stretched me to think beyond my gut reaction. I've been very impressed with others' advice on this issue and I'll certainly continue the conversation, at least in my head!


  3. Anonymous10:55 PM

    I love this post. As one of those moms dealing with "inclusion" in a "mainstream" classroom and a kid who "can pass" most days of the week, you've given me a lot to think about.

    You touch on something here that is, to my mind, at the heart of this discussion: The attitude of the school itself. What is the message from the administration, the teachers, the students themselves? Is "special needs" like a secret that shouldn't be told?

    It's so hard as a parent to stand up and shout when you are being told not to reveal yourself. Our kids have differences. But different does not equal bad. You're right. We need to fight the good fight. I just wish it wasn't so damn exhausting.

  4. Anonymous10:11 PM

    And people ask me why I homeschool.

    ...how long you got for the reasons? After being told by the administration at Julia's private school that the Asperger's diagnosis she'd just been given was "the flavor of the week" and not to be taken seriously, we knew her days there were numbered. Since leaving there, she's blossomed. Now that she's NOT around kids every day, her self-esteem is coming back and she has more friends now than she ever did in school (which was none...she was too heavily ridiculed). We belong to a homeschooling social group so she sees other kids and socializes but it's monitored by parents, and I'm available for instant feedback and intervention. We're fortunate that the only special services she's really needed so far is psychiatric and we can get that easily through my husbands medical insurance. She may also need speech therapy. If she needs more, we may need to go through the school district but I've spoken to them and they don't think she'd need to stop homeschooling to get those services (social skills classes, speech therapy, etc.).

    Taking her away from organized education has made all the difference in the world. She's happier and our family is closer. Best decision ever...for us, at least. Inclusion in the mainstream nearly took away Julia's entire spirit and self-esteem. Fuck inclusion. One size does not fit all.

  5. @creth, I'm sorry about all the crap you had to deal with. If that school had had an inclusive attitude, your daughter might still be there.

    Uphill battle. Many casualties. I wish so many of them weren't our children.

  6. Anonymous10:12 PM

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