Saturday, March 26, 2011

Autism Expo

Autism Expo...great in theory, not so great in execution.  Well, sure, I guess it's a wonderfully informative kind of thing if you aren't actually ON the spectrum.  Trying to put this into words is going to be difficult.  I should really try to find a way to make this funny.  Oh! Two guys walk in to a bar.

Third one ducks.  Did I set the mood correctly?  Probably not.  That's just one of those things people "like me" can't do properly.  I learned a lot about people "like me" today at the expo.  Aisles and aisles of my flaws on display where everyone can see.  Tri-fold poster boards really got a boost in sales,  One side of all the boards was all "Oh, here are all of your problems" and then the other side was all "and here's how our therapies can fix you so that you aren't a burden to everyone for the rest of your life."

As you can probably tell, the expo isn't exactly geared toward people actually on the spectrum.  It's geared toward parents "dealing" with children on the spectrum.  I left feeling that I am someone who is not a person, but something that needs "dealt with" or "fixed".  I feel a bit deflated.  What kind of life am I saddling Eric and the little dudes with?  A life of "dealing" with my issues?

And the therapies, dear Lord, the therapies.  If you don't do it, you are doomed to live in your parents' basement, with no friends, unable to get a job, a burden on your loved ones forever.  (Again, this was geared toward the parents, so get your kids these therapies, straight away, or your kid will be the one living in your basement forever.)  Well, I have news for you parents of children on the spectrum, THOSE EFFING THERAPIES ARE TORTURE.  That is what I have to say about it.  As a person in my situation, that is how I feel.

There were books.  Hundreds of pages of worksheets and planners and, seriously, an entire book devoted to exactly what to say in exactly what social situation.  MEMORIZE IT, CHILD, OR YOU WILL GROW UP TO BE NOTHING!  I know it sounds great in theory, to parents trying to help their kids, to adults trying to help their friends or significant others or spouses, but trust me, to those of us actually doing it, it sucks, and it sucks hard.  I don't say what I'm supposed to say in social situations because my brain works differently.  I'm broken.  I know it.  You know it.  Just let me be!  WHY do I have to torture myself memorizing all of this crap?  Why can't anyone just say, "Oh, that's a new perspective on that topic that I've not heard before."  Instead, "Oh, that's not the appropriate response, so I'll just go make fun of you with my friends in the corner.  By the way, you're fired."

So, we memorize the stupid social situations and what to say when so we can make friends and keep a job and be happy and not burden our loved ones, the whole time feeling like we're being completely fake, wishing we could just say "screw it" and be ourselves.  It is hard to be someone you're not every time you are out in public.  Truly exhausting.  Parents of kids on the spectrum, I know your intentions are good, I know they are, and you love your children and you want to help them, but on a personal level, it really feels like shit to have to do this.  It reinforces that we aren't normal, and we better shape up, because we're making your lives miserable by being who we are.  I do know that the therapies from Hell are important because, well, reality.  We can't act the way we want to act and still function in society.  I get it.  I guess what I'm trying to say is, can we give it a rest?  Does it have to be all autism all the time?  Can we just have a few days a month to be who we are?  No mention of differences.  No mention of therapy.  No mention of a special diet or special meds or special mantras or words or sensory therapy.  No, "Hey, that was really inappropriate."  Maybe try, "Oh, I never thought of it that way before."

I don't even have people pushing me like that.  In my situation, I wasn't a child with known ASD; therefore, it's probably a blessing in disguise that I didn't have to go through this torture as a kid.  I'm probably better equipped to deal with it as an adult.  As you can see, I don't deal well.  I'm the one pushing myself and making it all ASD all the time.  I think if I don't, everyone will think that I don't care about "bettering myself" and that they're going to be stuck with crazy me for the rest of their lives because I don't care enough to "fix" my broken parts.  I should take my own advice and give it a rest with the pressure.  I'm not perfect.  I'm trying to be "normal" all of the time, but I eff it up more often than not, and then I'm really hard on myself because I failed.  Especially if I embarrass a friend or family member in the process.

Dang it, this entry isn't funny at all.  Perhaps y'all should just go read Mompetition instead.  Valerie's blog is much more hilarious than this one, and since "Mompetition" is my next topic here, perhaps you'd like a reference point.

There were TONS of parents at the expo today.  Tons.  I stopped by nearly every booth, and at nearly every one, the Mompetition was alive and well.  Why in the name of Satan were these people playing the "my kid is more broken than your kid" game?! Seriously?  Also, you're discussing something very personal to your child with strangers, IN FRONT OF HIM.  Dear Parent:  He can HEAR you!  Your kid can hear that you're "bragging" to another parent about how he didn't talk until he was 7, while SHE got to hear her kid talk at 5.  (Haha, little Leroy! You win the title of most "broken" kid in the room!) That is a sure-fire way to make a kid feel like crap.  It made me feel like crap to not only read about how broken I am all day but then hear it from everyone talking about their kids who are like me.  I wonder if my parents feel like that about me, like they got a defective one.  None of their other kids have entire 'expos' devoted to their problems.

Then there was the absolute cruelty in the corner of the room.  Aisles and aisles of actual helpful information on ASD, and then, shoved in the corner of the room, stinkin up the joint, an effing SCENTSY booth.  WHAT were they even doing there, you ask?  I'll tell you.  Capitalizing on sensory processing disorder, that's what.  Yeah, scents help calm people with sensory issues sometimes, so hey, I guess the ASD crowd is a great burgeoning market!  Way to go attempting to capitalize on people with disabilities, Scentsy representative!  It backfired, however, though not exactly on the Scentsy rep, though I'm sure it did trickle down.  Here's an effing hint:  The same scents don't help all people with sensory processing disorder to calm down.  In fact, some scents rile us up and throw us into a rage.  These sensory triggers are different for each and every individual.  Setting up an effing BOOTH with a ton of DIFFERENT smells mixing with one another and floating through a room FULL of people with sensory issues is a bad.idea!!!  Jesus.  This bitch should be arrested for assault.  It was cruelty at its finest, in my opinion.  Why would the expo even allow such a booth?  Presumably the owners know that sensory processing and ASD go hand in hand and that their vendor hall would be full of small children who have trouble connecting their sense of smell to their emotions.  SURELY.

I have to end this blog entry.  I'm angry and defeated.

5 You Said What?:

Gwindylyn said...

If I listened to "experts", I would think that my son was broken too. So what he wasn't potty trained until almost five? So what he went straight from crawling to walking? When did he roll over for the first time? Hell I don't know. I have been lucky to have gotten a good pediatrician who always said, "He's on Jack time." Yes he's a challenge but he's sure as hell not broken. He's unique and gifted and smart and hilarious and I love him to pieces even on those so called "bad" days. Everyone who crosses his path says that he is "such a joy" and "so awesome" and this is WITH his meltdowns. I sometimes wonder what it would be like to have a "normal" kid and then I say fuck that. My kid IS normal. I just don't have a boring kid. Oh and I don't ignore his "issues." He has been in special day classes since preschool and he is going into a "normal" 2nd grade class next year. That's how broken my kid is. ;o] He rocks it. Hang in there Karen.

TheAutisticStepmom said...

I love Jack very much. I miss you guys.

Eternal Lizdom said...

I want to hug you.

I think the way you felt is the way a lot of people feel in other situations. Someone who is gay and trying to be straight. Someone struggling with their faith who is trying to look like a great Christian. I think this post can be understood by more people than you realize!

I lived a secret for a long time and spent many years exhausting myself with the mask I wore. So I feel like I can connect to your experience.

And this is why it is so important that you are blogging. Because there are moms out here who need to read your POV and who can hopefully gain insight and understanding.

Gwindylyn said...

We miss you too. <3

Mompetition said...

Hey lady, if you want to Like me...please like can click the Facebook thingy on my sidebar.