Monthly Archives: September 2013

The Ausome Elite

So, this latest story about Disney and the change to the Guest assistance pass has been making the rounds of the interwebs.  I have hesitated writing about it because there were those with a stronger voice who were doing a much better job.  And to be honest?  It’s not going to affect us as much as some others.  In fact we are working on “line waiting” in ABA, and maybe, in about a year, he might be able to handle the new system.  But I fully support those families that are not in our shoes, for whom this new plan will NOT work, and for whom a trip to Disney is now off the table.

But what I DO want to address is this idea that I unfortunately read (and experience) that we are living some sort of privileged and elitist lives as parents of a special needs children.  That apparently the  REAL reason many parents are outraged  is because we want “preferential treatment” because we are “too lazy” to actually parent our children.

Yup.  You’re on to us. I was just thinking this morning as I sat eating my bon-bons and watching my stories how HARD my life is, and wondering what i could do to make it easier.  Even though right now my life is made much easier in SO many different ways.  Let me give you a glimpse into this amazingly elite life:

  1. Where we live is no guarantee that my child will attend the local school. Oh no!  We get to have special meetings with tons of paperwork in which EVERY. SINGLE. ISSUE my son has is hashed out over a table and every deficit discussed until we are exhausted with eduspeak.  Some even get the privilege of fighting tooth and nail  and hiring lawyers sometimes to get the schools to actually obey the LAW and make sure our children get the education promised to them.  Not to mention all that extra face time some of us get with teachers, aides and administrators!  why, they don’t hesitate to tell us everything our kids did wrong!  They are like the paparazzi of bad news!
  2. When my child has a meltdown or an issue in the grocery or any other sensory laden disaster zone, our parenting is immediately called to question.  And if we should even ATTEMPT to explain our special privilege, we get joyful accusations of being too lazy, or told to keep our children out of the public if they “can’t behave”—told of course by the same people that our children “need to learn to behave in public” according to the “social contract”.  See?  We get the bonus privilege of having to solve basic hypocrisy! Sweet!
  3. If I should mention one IOTA of frustration on a bad day, my ability to parent a special needs child is called to question—hell, now even the safety of my child is brought up because there are those that think a bad day equals wanting to harm my child.  Or at the very least, that my language is abusive and shows how much my ableist bias is showing, and that I must resent my child.  So I get the very distinct honor of either watching every word I say OR taking it on the chin from every side.
  4. While other parents enroll their kids in dance or karate or gymnastics, I get the privilege of being told they can’t handle my son, or that I need to provide an aide, paid for from my own privileged pocket, to help.  Instead of the just so common practice of popping down to the Y and signing my kid up for “just work the energy out of him PLEASE” class A, I have to talk to each of the instructors and gauge their attitude toward children on the spectrum—since by law they can’t deny me, but that doesn’t mean they can’t be a dick.  And if I’m lucky, I get to watch an instructor ROLL THEIR EYES as they have to deal with my son.  I cannot BEGIN to tell you how self important that makes me feel.
  5. Some of our parents are in a REALLY elite group.  Their children just don’t sleep.  They get to spend their days punchy and irritated because they are surviving on a few hours here and there.  (I am sadly NOT a part of this group, but I can dream…)  Oh, the privilege of being absentminded and exhausted ALL THE TIME.  Gosh. If only, huh?
  6. We get the distinct pleasure of not being invited to birthday parties much, if ever.  Who needs games and cake and bounce houses and friends when we can spend our day at home lining up hot wheels cars?
  7. As they get older, what fun!  Bullying!  Our children will more likely be the target for a bully than most other children.  That really IS elite. Why it makes me break out in hives just thinking about it!  I can’t wait!
  8. And let me share our dining out experiences!  Not only are we often placed somewhere in the back where we won’t disturb anyone and can often be forgotten by the wait staff, but sometimes we don’t even get to eat and have to leave because they changed the menu or there was a clown or someone sneezed too loudly!  What a fun game to get settled in  and ready to eat, only to pack up quickly while your child is screaming ad having all the patrons looking at you in judgment!
  9. Have I mentioned the writer’s cramp?  Oh, the joys of becoming your child’s personal administrative assistant.  Filling out this form and that!  Quite often with the same information!  Oh, and the evaluations!  remembering your child’s agpar score isn’t something every parent has to do—only those of us in the core elite!  I only wish you could experience the Vineland which drives home EVERY. SINGLE. developmental milestone your child has missed.  Most of us get to fill that our every other year or so—unless we apply for something at a new agency!  Then we get to do it again! Bonus!
  10. We are so lucky to get to work first hand with insurance companies as we work with Medical specialists and therapists to make sure our kids get all the special treatment they are entitled to.  Like speech therapy and trips to the neurologists!  How special it is that we get to spend so much time sitting on hold trying to get treatments approved.  Muzak versions of “Horse with No Name” and the entire Yanni catalog.  It’s like the special soundtrack to our lives.

So yeah, it is a pretty elite group.  There’s so much more here I didn’t even address, because I wouldn’t want you to develop too much envy.  But I must say, all of these special treatments pale in comparison to the anger and idiocy thrown in our direction when we dare to stand up for ourselves and our children.  Gosh—the name calling alone is worth every minute.  I only wish you could experience just a day of this sort of privilege.

Really.  I wish you could experience a day—because then you might achieve the one special thing you CAN gain from such an experience:  COMPASSION.  Even I, whose family will not really be too hindered by this Disney thing, recognize that some families are now shut out from the happiest place on earth.  Because what being a member of this elitist group has taught me is that we have to learn to look out for others and  not just ourselves, because we are in this together, like it or not.

Now , if you’ll excuse me, I need to go shop for overpriced sensory gear labeled for “autism”  while I sit on hold with the insurance company.  I hope you’re not too jealous.

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Categories: Uncategorized | 16 Comments

Forced “Inclusion”

I read a blog a while back that called inclusion a grand social experiment.  That idea struck a nerve in me so deep that I’m surprised there wasn’t a loud “CLANG!” when I read it.  So, it’s little wonder that I look upon the schoolyard as a giant Petri dish.

(seriously, these kids are germs on wheels)

Anyway, what I mean is each morning when I walk my kid into school and watch him run off to play on the yard, it really does feel like a giant science experiment, and i keep looking around for men in white coats and clipboards and deadpan faces collecting data and making hypotheses.

I’ve mentioned before that Benji has some trouble socializing and playing with other kids.  Not a ton of trouble, but he requires a little patience sometimes.  He gets super excited around kids, and he doesn’t always know how to play nor know all the social cues the kids are giving him. He tends to forget all the things we work on in this therapy and that.  But he tries, people. HE REALLY TRIES.

And as painful  and awkward as it can be for  him sometimes,I try REALLY HARD not to helicopter too much and let him just go. And most mornings it’s good.

But sometimes its not.

The other morning, he was trying to play basketball with some other boys and there was an “incident”.  Benji was trying to pass the ball—but he’s a little unfamiliar with basketballs and passing and the rules in general, and he passed the ball right to another kid’s face.  And before I could get over there to stop it, the other kid pummeled Ben with the ball.  A few times.   Once I was able to break  it up and forced apologies out of everyone involved, the bell rang and the event was over.

(well the kid in question dragged his mom over to try to give my son a talking to, but I put the kibosh on that RIGHT quick.  Because trust me, Ben was sorry and was very upset that it happened.  I know this because after the kid left, Ben told me, tearfully, that he “wanted to be good”—which broke my fucking heart, people.)

Anyway, like most schoolyard incidents, it’s been put aside for other things, and other games, and maybe a little sadly, Ben avoids the basketball court now.  Partly because he has fallen in love with handball, but partly because the kids won’t really play with him.  And I don’t think it’s grudge holding going on there.  I think it’s a simple case of Ben doesn’t know how to play, so they don’t invite him in. Although the fact that he beaned a kid in the nose doesn’t help.

Anyway—I was talking to the resource teacher about this and mentioned that they didn’t play with Ben. And she said—“Well, we can make them play with him”—as if that were the most natural solution.

And it really rubbed me the wrong way.

I get that inclusion means that neurotypical kids are exposed to different need kids in the classroom—and naturally the hope and goal is that not only is the different need kid accepted, but that the neurotypical kids grow in their empathy and compassion.  And of course I want that.  Who doesn’t?

But is that going to happen when kids are forced to play together? Call me crazy, but I’d rather my kid be the one they “want” to play with and not the kid they “have” to play with.  In fact, writing that sentence just made me cry.

I’ve talked a lot about wanting compassion for my kid and others like him, but I cannot help but think this kind of thinking is only going to exacerbate others’ perceptions of his differences.  And I’m not saying I want those differences hidden—but you know as well as I that when people are comfortable with one another, the quirks of others melt away because we get used to them and accept them as part of who that person is.

I don’t know what the solution here is.  Naturally, I want my kid to be liked simply for who he is—and he does have a handful of boys and girls in his grade that seem to like him just so.  Hell, just this morning, one of them (the same one i wrote about here last year)  ran up shouting Benji’s name and giving him a hug. And naturally I want a world that will hopefully have just a smidge of patience for my son so that his natural strengths and talents shine through.  I suppose I just have the grand idea that this social experiment will make that happen naturally—and I’m afraid I am horribly naive in this belief.

What are your thoughts?  Is there a benefit in forcing kids to play together?  Or does it just widen the gap and magnify the differences that might later lead to more than simple exclusion?  Because that’s where my head naturally goes with this.  Is forced compassion just a natural fertilizer for the growth of a bully?  I honestly don’t know.  And I hate it that it’s MY kid that is the lab rat here.

 

[UPDATE:  Someone asked me on my FB page how the other mom dealt with the incident, and i realized i didn’t mention it.  She was fine.  She asked if my son apologized, and i said yes, and then she told her son to go on with his day, that it was over.  She had no issues, as far as i could tell. I was putting the kibosh on having her bring it up again after it had been resolved (so that Benji wouldn’t get upset all over again), and she agreed with that.  While it was an “incident”–it was pretty much also a “non incident”]

Categories: Autism, parenting | 11 Comments