Oh, It’s Real.

Right as I posted my last chipper post, the dogs came into the room and velcroed themselves to my feet.  This is usually the signal that G is getting worked up.  Sure enough, within a minute the shrieking of a full on, full scale meltdown started.  DH took the brunt of it tonight and I played backup, only stepping in when tagged to maintain optimal calm.  We’ve done this enough that we know our roles and step into place easily.  The only difference is the point person, whomever G first escalates with is the parent-in-charge because they have the information regarding what led up to and set off the meltdown.

The aftermath of a meltdown always makes us a little introspective.  We think about what contributed to the escalation, what we could have done differently, how we handled it, and most importantly we think of how G was feeling and how we can help him avoid getting overloaded in the future.  Tonight I’m also thinking about a conversation I had at a New Years party.  My good friend was asking how things were going with G in school and I replied that things were going very well, that the services were fantastic and were really making an impact.  An acquaintance that was also part of the conversation said, “Oh that’s right, you son is… well he… that is, he’s…” 

To which I simply said,”‘He has autism.” 

 And then she kept talking.  “Oh, but not real autism.  I mean, not like full-blown autism.  So it’s not that bad.  I mean, more like just a little autism, right?  What’s that called?” 

I was stunned and did not handle it as I should have.  I’ve thought of a million things to say since but all I said at the time was, “You mean Aspergers?  Yes, he probably has aspergers and no, it’s not bad.  He’s great.”

I love my son with my whole heart.  I wouldn’t change my life for anything, he brings wonderful gifts and insight into our lives and makes everything richer.  But I can’t minimize the challenges.  Figuring out how to be G’s parent is hard work.  It requires constant vigilance to make sure he’s doing well and not getting overwhelmed.  It involves protecting him from the things that are too difficult for him right now while developing plans to help him overcome those obstacles, so he can lead the most fulfilling life of his choosing.  It’s hard because he has autism.  Not a smidge of autism, not autism-lite, he has ‘real’ autism.  Just because he can speak doesn’t mean he’s not facing more challenges in a single day than most people face in a month.  And handling those challenges pretty spectacularly, by the way.

I don’t say this to be a martyr or to prove that my road is harder than another.  I say this because my biggest worry is that as he grows up, people won’t see that he has a disability.  They’ll see a child who is smart and can speak and judge him as having a bad attitude or being stubborn or defiant.  They’ll see a young adult who is strange or weird and deem him an easy target to bully.  Or they’ll see an adult and decide he is antisocial or mean.  I’m worried because I’ve just seen first hand that these people are out there.

Published in: on January 3, 2009 at 5:32 am  Comments (6)  

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6 CommentsLeave a comment

  1. You know, I totally understand what you are saying. I was given the same BS on New Year’s Eve…”But Evan is so bright, that autism crap is nothing. You are babying him and being fooled, he is just manipulating you into doing what he wants”

    And to top it off my husband agreed. Our marriage is rocky at its best…but just because MY son can speak and has a great IQ doesn’t mean he doesn’t struggle, stim, or have meltdowns. He has almost zero social skills in public….I can go on and on.

    I hear ya sister!

  2. “You are babying him and being fooled, he is just manipulating you into doing what he wants”

    Exactly! That attitude is maddening to me!

  3. When she said, “He doesn’t have real autism,” how did you not shove a hot hors d’oeuvre up her nose? I wish you could freeze time at moments like that, rush to the blog and get the best-ever comebacks, then rush back into place, put the world back in motion and then say your zinger. Darned the laws of physics and the time-space continuum!

    Have you thought of any good responses after the fact? I’d love one for the next time someone says this sort of crapola to me! Maybe: “His autism is more real than your [insert body part that’s been surgically enhanced]!”; or “Glad to hear you say that. I’ve been meaning to ask you if you’d care for him all next weekend while I take me a little mini-vacay.”

  4. Honestly, I don’t think I’ve come up with anything stellar. Saying, “Well you’re not a full blown a-hole, just a little a-hole but you’re still an a-hole” doesn’t seem quite appropriate. I could definitely use some help coming up with some more socially appropriate zingers!

  5. *waving to osh & mara*

    Osh, wow, I am so so so sorry that you encountered that sort of ignorance & rudeness. Also, it is so hard when parents are not on the same page.

    Mara, ROFL!!!! “His autism is more real than your [insert body part that’s been surgically enhanced]!”

    Wow, Lynne. Gosh, that sucks. I love the a-hole comment, go with that!
    I have not yet encountered that exact response, but in general I say that my son has an autism spectrum disorder or is on the autism spectrum. I remind them that it is a “spectrum”, because no 2 kids are alike. “When you have seen one child with autism you have seen ONE child with autism”.

    and you know what, our kids are great, yes, but sometimes it is also bad for my family. sometimes very bad. we struggle too. and our kids are still great (like you said)!

  6. Lynne,
    First, thanks for blogging. My 9 year old was just diagnosed with mild Asperger’s. I comment your preschool for encouraging early testing. It took 6 years of me knowing something was different and listening to “assurances” that all was well. I have never had to deal with specific comments, but I love the button I recently spotted: My child has autism; what is your excuse? … I would use that now if I had the same cranky old man approach me in Walmart and suggest I should leave the store when my 3-year old is having a meltdown

    Thanks for blogging… and keep the faith. I take comfort in knowing there are more of us mothers out there… and we are surviving. Years ago, I read the Jack Nicholson sawed the legs off his dining room table at the age of 9 so the table was right for him. I don’t know if he is Aspie, but that is just the sort of thing my son would have done at the age of 6. I wanted to find out what happened to Jack’s mom, but was too scared…

    I personally deal with this by mentally designing my implosion corner… I plan to outfit the new media chairs that begins to play the predetermined soothing music and automatically encloses the occupant with a pastel colored straight jacket.

    Live, love, laugh… we are blessed by the opportunity to experience greatness that others can not fathom.

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