Being Selfish

Like a lot of parents following the whole DAS thing at the Disney Properties, I’m spending a lot of time reading articles online and various fora.

What jumps out at me – and, bluntly, shocks me – is the lack of sympathy from the commenters there.

(Bearing in mind, of course, that my wife probably reminds me weekly that I really need to STOP reading fora on most MSM sites, since it’s usually the lunatic fringe that’s commenting with others just reacting and encouraging them.  There’s just something in me that can’t stop from clicking on the ‘Comment’ link to read the thoughts…)

Now, I’m not talking per se about just the DAS issue and how our community is reacting to the change from the GAC over to the DAS.  (And yes, some of us are behaving abysmally.)  The fact is, we’re on the first week of that new system, and I think there’ll end up having to be tweaks to it before it’s running smoothly… plus Disney has held out the fact that they can make individual additional accommodations as needed.

I’m more talking about the sheer negativity of adults and/or parents who don’t have children with disabilities.

I can handle the parents who genuinely feel that it’s unfair, when a park gives a child and the entire family with them a pass to cut the line at every single ride, especially on very busy days.  As I’ve said to my wife – I’m fine with waiting between rides, with not having the ability to zip around the park willy-nilly at any amusement park we visit.  There are ways (such as the ones I mentioned in my post from a short while back, A Proposal for Special Access) that the pass could be made more fair in general, and even out the difference between the sides’ view on it.  And even this past weekend, when we did use the Monster’s RAP at Busch Gardens to “cut the line”, it was in accordance with their policy – that the line was already fairly short, but would have been a 5-10 minute wait.

What I have problems with are the parents who think any accommodation is unfair.  The ones who think that if your child can’t wait in a line like everyone else – that even the check-in system is unfair – that you “don’t belong at [put name of place here]”.  The ones who think that we’re selfish for wanting our children, be it our child with any disability or our other “normal” children, to have some kind of childhood that resembles what we’d hoped for if they perceive that there’s special treatment.  The ones who think that we’re selfish for any accommodation that we would like to receive, in trying to keep things a level playing field – be it at an amusement park, in our child’s schooling, in recreational activities.  The ones who think we’re the unfair ones for anything that we’re given that their child does not receive.

And at times, I can admit that it does seem unfair, the things we complain about as special needs parents, versus the perception outsiders have.  The Monster is in a classroom of twelve kids, with four adult staff (teacher and 2 classroom aides, plus a 1:1 for one child) while most of the kindergartens have 20-25 kids in them in our town.  The Monster’s school bus picks him up at our door, while many other children’s busses are at a nearby corner.  We have programs in our state to distribute “free” money for non-therapy services to which NT kids have no access.  But on the flip side, I think most of us parents in this boat would also happily give up every last one of these things, including the special treatment at amusement parks, to not be dealing with this situation.

For those of us who are in this situation… we all know that (for most of us) it doesn’t really have anything to do with being selfish.  But this isn’t for us.

So to those parents in those fora who think that things need to be “equal for all” to be “fair”, I offer this part of my Autism Parent Al-Chayt:

I am sorry for the sin of being selfish.

I’m sorry for being selfish for wanting my son with Autism to be able to have some fun in his life, something that’s not wholly organized around his therapies and school.  For wanting him to have fun memories that the friends he’ll someday have can relate to.

I’m sorry for being selfish for wanting my other son to be able to do what other children his age do, as if his brother didn’t have Autism, so he doesn’t – when he’s old enough to understand why his brother is the way he is – resent his brother or us.

I’m sorry for being selfish for trying not to cause a scene by carrying my son – kicking, flailing, screaming – out of public places and causing a half-moment’s distraction instead of a half-hour of annoyance when he has a meltdown in public.

I’m sorry for being selfish for my own part, for wanting to – very occasionally – pretend that we’re normal, and able to do the things that you take for granted being able to go together on as a family.

I’m sorry for being selfish in my want for you to have the slightest understanding of what it’s like: that you wouldn’t, in a million-billion years, want to be in my shoes, that you couldn’t handle being in my shoes, and that, were you me, you’d want some understanding from others too.

For all these sins, please forgive me, pardon me, grant me atonement.

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