Inclusion Ain’t Just For Them…

I had fears when Benji was mainstreamed.  Multiple fears.  I worried about his acceptance.  I worried about his well-being.  And I worried about where he would fit in the grand scheme of things.

And in true homo-sapien fashion, I spent some of that time worrying about myself. Because I felt—rightly or wrongly—that I was gonna have to work twice as hard at EVERYTHING—keeping in touch with the teacher, supervising his access to the curriculum, and making sure his socialization was continuing to move forward. Because I knew that we were moving from a micro-managed world to the great melting pot of general education.

Now, I am in no way saying that the parent of a kid in special day has it easy.  Work is work, no matter how you look at it.  But once you get used to the insular world of  the SD (special day) classroom, it takes a great leap of faith that you will be able to manage your family as easily in general ed.

Example:  when Ben was in SD, i spoke to the teacher EVERY DAY—just by the nature of the class. Mostly because I had the luxury of picking him up daily.  And by picking him up, I mean I had to meet them at the class for him to be released to me.  At one point there were only 6 kids in the class.  So, of COURSE the teacher and maybe one or two of the aides told me stuff.  Every day was a “this worked, that didn’t, here’s what we’re doing” conversation, that allowed me to shape our in-home therapy program and the non-therapy time.  It was fluid and evolving.  If I had concerns, I voiced them THAT DAY.  If Ben was having troubles, we would troubleshoot and develop an action plan THAT DAY.  If he had the awesomest of most awesome days we would stop at the Ice Cream shop THAT DAY.  SD really helped fulfill my need to live in the now.

And, socially, there were fewer parents to know—and all of us with a similar track: to get our kids included and accepted by the rest of the world. Now,  I have established that I am not the most social of creatures, but I DO know how to be nice and make friends, and have been known to do so on occasion.  The phrase “you can be charming when you want to be” has been thrown in my face more times than I can count.  So when there’s only a few sets of parents with whom to mingle—my charm flows a little more graciously.  A month or two in, most of the parents know one another, partly from mingling, and quite often through organization through the classroom.  Benji’s last SD teacher even went so far as to make a phone tree so that those parents whose kids were bussed in didn’t miss out on our main socializing task:  PLAYDATES. While playdates are a nice diversion for kids in mainstream, they are VITAL for kids on the spectrum—to learn how to play either with one another, or at least in the vicinity, and to give parents a chance to discuss their lives with someone who understands their unique vocabulary  The friendships we build are strong—they are not necessarily passing acquaintances.  Honestly?  i still speak to a few of the parents, and Benji attends a totally different school now. important socializing playdates still occur—just not as frequently.

And Inclusion is…well, its a different animal.

While Ben seems to be fitting in just fine—well, fine enough—I am not.  The things that made me seem so with it and calm before among special needs parents, now stand out.

I helicopter.  I’ve had to for so long that it is a physical STRUGGLE to stand back and just let him play.  To lose sight of him on the yard.  Gone are the days of him reacting to others with rough tumbles running away because of this distraction or that.  On the yard now, he’s like any other kid.  Some kids like him, some don’t.  And I stand like some sort of awkward sentinel, still watching his every move.  Because that’s what I’ve HAD to do for so long.  I don’t chit chat with the other parents—not because I’m unfriendly (although morning me is HARDLY sociable) but because it’s distracting. When you’ve been on guard for so many years, relaxing just doesn’t come naturally.

And honestly—I don’t always have common things to talk about with other general ed parents.  Our kids’ lives are…different.  Not like ISraeli/Palestinian different, but I mean, it would be just as awkward if we were the member of some religious group that didn’t allow dancing or something.  Eventually, the conversation has the potential to turn awkward.

Now—to be fair—this is not always the case.  I’ve met a couple of parents that greet Ben’s noise canceling headphones and scripting with the single word question of  “autism?” and moved on to talk of their weekend plans.  I’ve also met some who were brave enough to ask the questions I see in some others’ eyes.  I’ve also heard stories about someone’s sister’s cousin’s neighbor’s kid—which I recognize as trying to understand or find common ground—and I just hope I don’t grimace when they speak to me

And I’m lucky to get the teacher’s ear when I can.  A comment here, a snippet there. In a class of 20+ kids, I cannot expect her to know every little emotion my lil grub had all day.  It would be a foolish and selfish expectation.  Logically, I know this.  But that doesn’t mean the habit built before is so easily demolished.

I do however have the luxury of a 1:1 aide for Ben, and she gives me the deets when it’s important.  But I try really hard not to inundate her with too many questions.

I am trying really hard to learn my role as “just another parent” (even if that is NEVER who I will be)

And before my detractors come in with phrases like “well, you can’t expect everyone to be nice—you expect too much” let me be clear:  I don’t.  I don’t expect the teacher to give me full parent conference style reports daily.  And i don’t expect ANY of the other parents to make friends with me.  And not because I’m not awesome.  I just know I only have so much emotional currency to make friends, and I always assume everyone else is in the same boat—whatever their situation.  I don’t just start chatting up people willy nilly because, that honestly annoys me a little when people do it to me, so I practice a “do unto others” thing.  NONE of these women have be be my friend.  NONE.  While it was pleasant to make friends with the other parents in SD I never expected them to be friends either.  Friendships with school parents is hopefully a pleasant side effect, but in no way does it make up the main focus of Benji’s academic career.

No—what i want to point out here is not that it’s hard to make friends, but rather moving from SD to Inclusion is a HUGE paradigm shift for the parent.  When we start our kids in school—usually in some form of SD, we have to adjust to it.  Unless we are familiar with it, we have to LEARN how to navigate that world. and  get used to the idea that it is just different—neither worse nor better.  We get a little spoiled by the insular world where we all have common goals and frustrations, and we learn to lean on one another, develop support systems and celebrate those things that may seem minor to the world outside.  With that in place at our backs, we are able to advocate and push our children to help them and make sure our they are accepted no only at home and at school, but  “out there” in the big bad world.  Like our kids, a routine is built to help us navigate the world, and that routine is comfy and secure.

But our routine has changed, and we have to adjust again. Ben adjusted in weeks.  Me?  It’s taking a little longer. I have to get used to “life like everyone else” even though, our lives never will be.  I think I will always be a different parent. Because, like my son’s autism, my difference won’t always be visible to the unwashed masses. Because among all the other parents waiting at the gate at pick up, I am like any other mom until proven otherwise.

Inclusion just isn’t for him, you know.  I’ve got to learn to navigate this world as deftly as my son maneuvers his way around the playground. I suppose I should adopt his fearlessness, but I really detest scraped knees and tetherball.  Perhaps I can find a nice reading nook where no one will bother me…

See?  Doomed from the start, I’m afraid…  ;)

Categories: Autism, parenting | 1 Comment

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One thought on “Inclusion Ain’t Just For Them…

  1. Julia

    Inclusion Ain’t Just for Them was written as though I were living it. You wrote my experience and described nuances I hadn’t fully identified. How fantastic. Thank you.
    Julia

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