My Autism Insights

Ash and Pikachu

For the sake of expedience (and getting the kids to bed so I can watch a zombie flick) here’s a recap of the highlights:

The family costume theme this year was Pokemon: Gus dressed up as Ash Ketchum, MM was Pikachu, Mommy & Daddy were Team Rocket.  And we were really channeling the bumbling duo by locking ourselves out of the house, remembering the batteries and forgetting the camera, forgetting the extra bags for excess candy, stomping on each other’s feet in the dark…total clowns we were.  Maybe that’s an idea for next year’s costumes.

Gus was concerned that we were missing “Hardball with Chris Matthews and Countdown with Keith Olberman.”

Someone had a rottweiler and the owner told Gus that the dog was pretty vicious and that he should stay back.  Every house we went to after that, Gus said, “Trick or treat…do you have a vicious pet?”

Almost forgot, before we left, the kids took a shot at being hawkers.  They ran outside with no shoes and started shouting that trick or treaters were welcome at our house.  Never mind that there were no people in sight.

MM’s friend fell and hurt her leg, so MM walked next to her with her arm around G’s waist propping her up.  Very sweet.

It was a pretty amusing night all around.  Do you have any funny stories from Halloween ‘08?

What a week…

I am thankful when Gus gets off the bus and his monitor delivers the message from his teacher, “Your son is AWESOME!”  That was Monday and it still makes me smile.  Someone upstairs must have anticipated the kind of week I’d be having…

I am thankful that tomorrow is Halloween because heaven knows we could all use some fun these days.  Both kids will be having their costume parties at school, but we’re only invited to Gus’s.  Then home for our silent supper and trick-or-treating, which may even go a little late because it’s not a school night!

I am thankful that I got a big chunk of work accomplished today so that tomorrow I can actually enjoy Halloween with my children.  It would stink if the Pokemon ‘twerps’ didn’t have Team Rocket with them.

I am thankful for Nanowrimo!  I get to take a crack at writing another novel starting in two days!  I’ll either finish or have a nervous breakdown trying!  Yay!

And a bonus today: I am thankful for St. John’s Wort, clogs, hats, dishwashers and Nestle Tollhouse cookies, not necessarily in that order.  Yes, I’m really off topic and scattered today.  Fried would be an appropriate term.  And the month of November
will only get more fun. Stay tuned, and please share your thankfulness in the comment section!

A good friend (B. you are made of awesome!) linked me to a wonderful radio program produced by American Public Media entitled Being Autistic, Being Human.  The program runs about an hour, but there’s a two-hour version of the uncut interview available on the site as well.  In this segment, Krista Tippett interviews Paul Collins and Jennifer Elder(Different Like Me: My Book of Autism Heroes; Autistic Planet), both authors and parents to Morgan, an eight-year-old boy with autism.

Many elements of this show resonated with me and mirrored much of my experience not only with Gus, but with members of both sides of our family.  Paul talks here and in his book, Not Even Wrong: Adventures in Autism, about how many ‘traits’ often run through families of individuals with autism even if those family members don’t present with full blown autism.   I actually had a laugh this morning at an incident, fairly typical for me, at my daughter’s school.

I had gone to the school book fair and gotten completely engrossed with looking at all the shelves (books = crack for me) when I realized that everyone had stopped moving.  The Pledge of Allegiance was being said over the loudspeaker and I hadn’t even heard it.  By the time I stopped to place my hand over my heart, it was almost done.  Paul speaks about this kind of single-minded focus that is common among people with autism and their families, who are often found in, “solitary professions which require deep focus and abstraction.” He had mentioned that when he gets involved in his work it is like turning his ears off. I regularly see this level of intense focus and inability to switch gears in my family, and I’m sure my mom has loads of stories of how rude I can be when I get interrupted from something I’m engaged in.

I was struck by the couple’s candidness about when they first learned of Morgan’s diagnosis.  “His normal was normal to them,” and they really didn’t have any other frame of reference, something that I blogged about just a few days before hearing this show.

Another aspect of the show that touched me was Paul’s discussion of his decision to put Morgan on medication.  This has been a topic that’s come up again and again regarding Gus, and I’m sure it hasn’t been put to rest for good.  He wrote an article about what finally helped him resign himself to the choice: The Vanishing Boy.

While it doesn’t make the edited version, during the interview the question of controversies within the autism community was addressed.  Jennifer explained that she is not of a mind to want to find a “cure” for autism.  “Before we eliminate this, what are we going to lose?” And quoting Paul’s book,

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

Without the particular abilities of autism, the world might not have had any Newtons or Einsteins, Andy Kaufmans or Andy Warhols.  Hopefully, with shows like Being Autistic, Being Human,  the conversation may start to change more toward how people with the challenges and abilities of autism can be better accepted and integrated into society instead of feared and excluded.

Prompt by Mo over at Manic Monday !  Thanks, Mo!

The Mystery of the Ghost

as told to me by Gus

In a haunted mansion in Transylvania, on a Thursday, in March, there was a weird sound.  It was a ghost.

“What an emergency!” one of the people shouted.

First, it threw a rock.  The rock was almost thrown into deep space.  It wasn’t like it was elementary or something, but the ghost said, “WOOOOOOO!”

“One North America…two North America…” said a voice.

“What was that?” said another voice.

Then another voice went, “Ya ya ya!  Ya ya ya!”  That was just a bunch of people in daycare.  The ghost got confused and went back into the grave until all that, “Ya ya ya! Ya ya ya!” stopped.

The End

P.S. Have you seen Transylvania?

My son, budding mystery/suspense author…or comedian.  I swear, I did not change a single word.  I’m struck by the fact that the ghost didn’t like noise, and also very amused by the opening line.  If only I could remember to have that level of specificity in my own fiction…

Anyway, try having your kids make up some ghost stories & let us know how it works out!  Happy Monday, y’all!

To answer Gus’s question, he does apparently.

It wasn’t pouring, but it was that gross, misty, cold rain coming down when we got to the soccer field yesterday morning.  I was expecting for the coach to say they were canceling, but no such luck.  Shortened practice/game schedule.  Fortunately, the rain stopped, but it remained cold and damp.  Gus wasn’t fazed; for me it was just shy of torture.  A few degrees colder and I would have been huddled up somewhere trying not to cry.  Cold is bad.  Wet is bad.  Together…ugh.

The game was a little different.  Instead of splitting the more experienced players from the younger, less experienced ones, everyone played a game together.  Gus got a new mentor, a girl this week named C.  He had a great time following the ball from one end of the field to the other.  He wasn’t aggressive enough to get anywhere near handling the ball, though, except for one time toward the end of the game.  Then he sort of ran it in the wrong direction.  I think all the players on the field threw him for a loop; he often ran to the sidelines to get away from the crowd. No matter, it was a good time for him and that’s what counts.

Today we went for an early morning bike ride.  There probably won’t be many more of those in near future.  We may attempt some pumpkin carving this afternoon.

On the sleep front, I’ve added something new to the bedtime routine.  First, we have these mats, not exactly exercise mats because they’re thicker (just over an inch thick) and not slip resistant.  I came by these mats because my ex-boss was giving them back to the hospital after the yoga studio closed down and she knew that Gus liked sandwiching himself between them.  So she gave me a couple for him.    At night, after therapeutic brushing and joint compressions, I let him curl up in a ball, and then I roll him up in the mat like a big burrito, and roll him back & forth on the floor.  He loves it!  Deep pressure sensory input before bed seems to be working better than the brushing, which he is resisting, at this point.

So that’s our weekend.  Hope you are having a great one too!

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

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Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

It’s been a long week and some thankfulness to put things in perspective is in order.

1. I am thankful for the two nights of uninterrupted sleep I got this week.  The third night, last night, was not the charm.  We may have to start taking some other proactive measures before bedtime.  The second time Gus got out of bed last night, I tried taking the bad stuff out of his head - I put my fingers to his forehead and made a vacuuming sound - so he wouldn’t have any more bad dreams.  He seemed to go back to sleep after that.  I think we’re also going to take all these florescent lights out of the house.  They may be better for the environment, but I have a sneaking suspicion that they are not doing very well for him.  I find the noise they make very irritating, so I wonder if they are contributing to some of this.

2. I am thankful to have a husband and father for my children who is relatively engaged with his kids, especially now when the ‘boy’ issues are starting to emerge that I so don’t want to have to deal with.

3. I am thankful that we’ve decided to back off on the casein-free diet.   We’re not going whole hog back to dairy, but I’m allowing cheese back onto the menu.  The pure bliss on my kids’ faces over being allowed to have cheese again made it clear that we’d made the right choice.  It should always be that easy to make kids that happy, so I’m grateful to have been able to do something right by their standards.

Please feel free to share your thankfulness in a comment.  These days it seems more important than ever to remind ourselves of even the smallest blessings.

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.

Sunday morning, bright and early, we went pumpkin picking.  Except we were only marginally interested in pumpkins.  Gus had gotten the idea in his head to go through a corn maze.  He loves mazes, so we decided to indulge him.  MM was excited about it too, but she’s usually happy enough just being outdoors doing something.

The kids went in the smaller maze first - I didn’t go in that one.  Then a while later, once the corn dried from the frost, we went in the larger maze.  Gus’s sense of direction and absolute confidence to know exactly where he’s going (or at least he gives the appearance of it) always amaze me.  He doesn’t even have to pause to decide which way to go.  Alone, I’d have been trapped in there until the state police came to find me.

Both kids also really enjoy hay rides, so we took one of those around the pumpkin patch.  Even despite the cold, it was a magnificent day and I got a couple of cool pictures for a change.

All in all, a cold but fun morning.  And we came away with the knowledge that Gus seems to be a human compass along with 3 pumpkins, one of which will be carved into the visage of Barack Obama.

 

Prompt by Mo at Manic Monday .

The bite of cold air pierced my spine as I stood at the bathroom doorway watching a silent child staring back at me.  He took a drink of water and then waited.  I knew the look on his face, calculating, looking around me toward my bedroom.

Oh no you don’t, mister, I thought.  I wrapped an arm around his shoulder to lead him back to his own room, but he tried to dodge.  But I’d anticipated the reaction, so I got a grip on him and got him back into his room.  He promptly curled into a ball on the floor, not wanting to get back into his own bed.  It was 1:30.

Got him back to bed, still freezing without my robe on, and he didn’t want the light off.  I learned that the stupid CFC bulb we put in his ceiling light doesn’t work on a dimmer, so I plugged in an extra night light, told Gus to go back to sleep, and got back into my own cooling bed.

I should have been glad - he woke me from a nightmare about water mains all over New York City breaking and causing massive flooding. If I’d stayed asleep any longer, there would have been a tidal wave for sure.  That’s what happens when your downstairs bathroom springs a leak just before dinner.

I lay in bed, listening to the thumping of my own heartbeat, not soothing, just loud, and eventually drifted back to something resembling sleep.  And wouldn’t you know it?  I wouldn’t have expected inspiration to bite me in the brain stem at that hour, but it did.  It was a weird stream of consciousness thing going on, but I came to the conclusion that Gus’s sleep problems started about 6 months ago - when I changed his room around!  Duh!  Of course that would have disturbed him!  If this sounds like middle-of-the-night brilliance, also consider that I started thinking that I’d arranged the furniture in a way that didn’t work with feng shui.  It was 2 a.m.; cut me some slack.  So, I decided that if I am ever going to get a full night’s sleep again, I will have to put the room back to its original state.  Then I went back to sleep.

For half an hour.

I heard a door open then slam shut again.

Damn.

The light was on and he was huddled back in the corner on the floor.

“Did you have a bad dream?”

“Yes.”  Talking was good; now we could get somewhere.  “It was about a man with a sting ray tail for a face.”

Uh huh.  I’ve often heard that Aspies don’t lie.  Someone should tell Gus this.  It’s not that he doesn’t lie, he just really stinks at it.  I knew he was making up Sting Ray Face by the little half smirk at the right side of his mouth.

I coaxed him back to bed and then asked, “Would you feel better if we moved your room back the way it was?”

His face was a sun rising over the mountaintops.  “Yes,” he breathed in relief.  Who knew?  I promised to do it today.  And then I was graced with three hours of unbroken rest.

To an Aspie, change is not always good, even 6 months later.