Philosophical meanderings of Grandpa Know-It-All…

Every day for the past nearly seventeen years (ok…sixteen years and 51 weeks as of today,) I have been in constant contact with J.  I breastfed him from birth to the age of four (exactly until twelve years and 51 weeks ago.)

I will now give you a moment to let that fact sink in…

Done?

Ok…moving on!

In a nutshell, not only have I been dedicated full-time to caring for J, attending to his needs, his development, his education, his acquisition of skills, etc., etc., etc., but I have also taken the time to do sufficient research to properly fuel more than one doctoral thesis on the subject of Autism.  (No, I won’t be going back to school…the prospect is tempting, but I no longer have the energy or the functional brain cells to spare.)

If the word Autism is mentioned on the news, my ears prick up like a horse sensing the approach of something unusual.  If the word Autism figures in a headline, magazine cover, essay I will latch on to it and read the text through.  Yes, I follow the subject with as much avid interest as others follow football or baseball.  I try to separate the wheat from the chaff, but I do read the majority of what touches on this particular issue.

My eighty-something year old dad has turned Autism into his hobby.  Correction: proving that J has been misdiagnosed and coddled into being autistic is his hobby.  “I was a quiet child with great affinity towards music, but I am not autistic!”  “I didn’t really speak until I was five, and I’m not autistic!”  “When I was very young…”  That the majority of these conversations take place over the phone, long-distance, is a blessing in disguise: I can emote and bounce around the room in desperation while maintaining an evenly-keeled tone of voice.  Usually, after hanging up, I lay on the carpeting staring at the ceiling for a few minutes…

My dad has never been wrong.  The older he gets, the more reference books he keeps next to the phone so he can correct your usage of a word or indicate if you are correct in telling him it comes from Ancient Greek, Middle English or a cockatoo’s wing-flapping dance on a stick.  If he cannot prove he is right, he will say he has to go…and he hangs up without further ado.  My dad is the only person who doesn’t drill a hole in the wall: he furrows an orifice from the surface and into the…  You get my meaning.  It’s never as simple as it can be with him.

So, for the past thirteen years he has been trying to prove that J has been misdiagnosed and I’ve been going about this all wrong.  He loves his grandkids; he cares about his grandkids; he hasn’t spent anywhere near enough time with his grandkids to know this is not all a figment of my imagination (or of our collective imagination as a family.)

We have run the gamut of “if I wire an apparatus with the proper connections to generate a sound that indicates yes and another to…”  Dad, it’s better if he learns to say YES or NO.  “Well, but if he can’t…”  If I had followed my father’s entreaties J would be well versed in semaphore by now.

My mother has a M.A. in Education.  That hasn’t been helpful either.  For one: whatever my father says, my mother will oppose.  Whatever my mother says, my father will call “quack theories.”  Neither one of them thinks I know what I’m doing, but neither one of them realizes that -were it not for the fact that we ARE doing things- J would still be sitting in a corner chewing on his big toe to entertain himself while everyone decides what the best way to go is.  The times I’ve tried to argue this point I’ve run into that mentality that tells us we will never grow up in our parents’ eyes.  To them I’m still eleven years old and talking to Herman the Pet Rock while listening to Fleetwood Mac and eating Snickers up in my bedroom.

“There is this book they use to diagnose…”  The D.S.M., Dad.  “Um, yes…the (and he breaks the name down into each and every word, quoting from the article) and if they change the definition there then J will no longer be considered autistic.”  Well, Dad…for one, J will probably still hit all the marks required for what they would change the definition to, and -even if he doesn’t- we would still have to continue the same degree of efforts to help him.  Silence on the other end of the line.  “Dad?”  “YES!”  “Madonna’s from Michigan; it doesn’t matter how much she affects that phony British accent, she’s still from Michigan.”  “Who?”

I am more concerned, to be quite sincere, with the young parents who don’t yet know their child is autistic and who will face a doctor who will say “according to this book your child is perfectly fine and there’s nothing to worry about.”  I know what we do, and we know where we’re heading with this.  The book won’t change a thing for us because we don’t entirely rely on the system to help J.  But what about those other kids out there?  What will happen to them and to their parents?

The article quotes someone as saying that re-defining Autism will “nip the surge in the bud.”  That’s like saying “well, if we stop calling this a weed, we won’t have to get down on our knees to pull it out of the ground.  It will then stop being noxious!”  I don’t know, but for “very smart and educated people” that’s just plain dumb.

I have to go now.  I have to read this article, refer back to the current definition in the D.S.M. as it stands unrevised and get ready for tomorrow’s phone call asking if I’ve “done the homework” so I can explain why, even with a new diagnosis, the PECS boards (which I’ve been explaining for years and dad still thinks are dumb) and sign language (which he thinks stands in the way when we could use something “wired”) will still be necessary…  It’s a good thing I have post-its, highlighters, and I am well-trained in making a slide presentation to properly illustrate my points…

Like Ryan Adams sings in J’s song choice for last night (Whiskeytown’s “Don’t Wanna Know Why”) “breathe in, breathe out…carry on, carry out.”  Sigh…

Advertisements

2 thoughts on “Philosophical meanderings of Grandpa Know-It-All…

  1. I was at first hampered in seeking a diagnosis for my J (he is in fact also a J, and we often call him J) by my parents’ assumption, with the best of intentions, that he was not speaking because I had probably not spoken to him enough, touch-aversive because I’d not touched him enough, that there was some thing I must have done wrong to cause the struggle with his potty training… In fairness, once they heard ‘autistic’ they threw themselves into learning all they could about it, and doing everything they could to help. I’ll never forget as long as I live how my dad would patiently coax J into submitting himself to a bear hug. He just wouldn’t give up until J came to him and let Oupa (my family is Afrikaans, that’s the word for grandpa) hug him. J would acquiesce, stiff as a board, but as we all persevered but never forced, he started accepting touch. Now he sometimes – seldom, but it happens – hugs me of his own accord.

    I must say, reading about your dad, he sounds as if he’s on the spectrum. I know one tends to see it everywhere, and the line between a few eccentricities and high functioning autism is arbitrary. But it’s always interesting to get to know families of people on the spectrum. I never focus on finding the roots, I’m always surprised when I stumble upon something that could have been an example from a textbook describing Asperger’s or high functioning autism, then think to myself: “Well, why are you surprised?”

    Either way, best of luck with your dad. You humble me with your wonderfully positive attitude. Funny enough, I’ve seen that in other families dealing with kids much worse affected by autism than mine. And I know, as I’ve said before, that we are all more likely to shed our tears in private than in public. That doesn’t change the fact that your J has an amazing mom, and an amazing family standing by him.

    • The greatest obstacle to diagnosing our J was his biological father’s family; I was told that I was just “trying to find fault” because my oldest was “my favorite.” It was very frustrating and, to this day, they don’t participate in anything having to do with either of my children, but they will tell anyone and everyone that there’s nothing wrong with J, it’s just my way of getting attention. (Can you see my eyes rolling??? Sometimes I dislocate them when I think of certain absurd things that happen around here or on the fringes.)

      I’ve often wondered if my dad’s on the very high-functioning edges of the spectrum; when I was very young I’d visit my parents (don’t ask…very complex…,) and my dad would have all these little baby-food jars full of all sorts of nuts, bolts, screws, washers, and such. The organization was beyond anything you could begin to imagine…everything labeled, everything sorted to the nth degree. My mom was another story…she was incredibly fixated on other things. So, I ask myself exactly what kind of psychological maelstrom we’re dealing with here. 🙂

      I have parents, brothers, sister, nieces, nephews…we hardly ever see them. Part of it is that we’ve never really been the touchy-feely sort, part of it is that we have very different ways of viewing things. I try to be very direct about our situation, but people often don’t want to understand just how difficult it is. People don’t “get” why J wouldn’t “get something right away” even if it’s simple. They don’t really understand why sometimes teaching one little thing (like toilet-training…that didn’t happen until he was 8!) can be a rather long process while others he picks up with very little effort!!!

      I don’t think I’m amazing. I spend more time being amazed by the fact that I can laugh at stuff than feeling like I’ve achieved something. 🙂 The credit goes to my lovely, lovely great-aunts…they taught me that I was going to grow old, that I was going to cry, that things were going to get rough, and that it was entirely up to me to laugh at the stuff that was overwhelming. Part of the secret is having little quotes hanging on the walls all over the house: Monty Python, Erma Bombeck, George Carlin…and James Thurber, the man who said “Humor is emotional chaos remembered in tranquility.”

      Cheers! I’m here if you need anything. Always a pleasure hearing from you! Say hello to your J for me.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s