My Autism Insights

Let’s dive right in with the gratitude!  Woo!

1. I am very thankful that we have such wonderful neighbors around us.  I am constantly struck by how accepting they all are of Gus.  The kids play with him when he’s feeling social, but don’t chastise him when he’s not.  The parents never give ‘the looks’ and are always kind, even affectionate to both my kids.  If they think any or all of us are weird when they’re in private, they never show that, and that’s much appreciated.  There are some really good people in our community and I’m glad we moved here.

2. I’m thankful that Gus has learned to come into our room when he wakes up without turning the bright lights on in our faces.  He’s comfortable with curling up on the futon and either going back to sleep or just chilling out until we wake up. 

3. I am thankful that Gus is almost done with summer school.  It will be nice to have both kids home so we can have some real fun.  Daddy will take some time off work and there will be at least one, probably two, camping trips in the near future and a trip to a water park - late day, mid-week when it’s the least crowded.  Gus and his sister will have a ball.  I’ll probably have many gray hairs by the end of the day, but it’s not about me, is it? 

What are you thankful for today? 

“We’re just having one of those days,” I said, trying to corral my two soaked swimmers toward the car, one dragging her feet, the other clearly agitated and not wanting to walk.

“What if I find myself saying that every day?” another mom asked, walking ahead of us.  Wouldn’t we all like the answer to that question - neurotypical and special needs moms alike?

She gave a sympathetic tilt of the head when I stopped suddenly, unable to converse any longer because my son screamed frantically all of a sudden.  There seemed to be sand scratching his legs beneath his swim trunks, already annoying because of their cold wetness. 

Ironic that they were wet at all as the water had been too cold for him to get fully into the lake.  That was okay; I wouldn’t have done any better.  The running toward the deep water without the rest of his group or his teacher, causing me to do a series of sprints from one end of the beach to the other in some twisted sort of Olympic time trial…not so okay.  Mini-meltdown as the teacher tried to help him jump into the deeper (4 feet) water when he stated that he wanted to jump in, insisted that he wanted to jump in….

But the part that made me want to cry was the parent walking with her daughter, making sure to keep a safe distance from my odd family.  We’re not contagious and we don’t bite.  It was just one of those days.  And sometimes we have more of them than other people, but not always.  Not yesterday.  Hopefully not tomorrow, but if we do, we’ll deal.

Stressful day at swim class.

 image by Linda Bucklin 

Last week I posted about Michael Savage and his idiotic comments about children with autism.  AFLAC led the way for sponsors to drop his show.  Well here’s what followed:

Sponsors who have dropped Savage:

Home Depot

Sears

Direct Buy

Cisco

Radio Shack

His show has also been terminated from radio stations in Mississippi, Virginia and Ohio.  There was a protest last Friday on Wall Street organized by Autism United whose president, Evelyn Ain, has stated they will be protesting and doing what they can to convince his sponsors to withdraw their support from his show.

Do you think Mr. Savage, if he survives this debacle, might think twice about the beehives he’s poking from now on?  Can’t say I feel sympathy for him though.

 image from It’s A Blog Eat Blog World

From the moment we left the house, the sky threatened a downpour.  But we had to go to our neighbor’s birthday party: outdoor pavilion, playground, mini-golf and a beach.  Miraculously, the weather held, and Gus did pretty well even though there were loads of kids, some of whom were unfamiliar.   He went swimming and played a few games of golf.  I eased up on the dietary restrictions for the day.  Everyone, including Gus, was having a great time.  And then it was cake time.  All the children gathered under the pavilion.  Just as the first note of the Happy Birthday song was sung, a loud crash of thunder announced the commencement of the storm.  The sky let loose a torrent of big frigid drops. 

Hands held over his ears, Gus shuffled around in circles trying to find a “quiet place” away from the wind, the pounding of the rain against the roof, the squeals of children.  I’d forgotten the headphones.  Finally, despite hating to get wet in the rain, he asked to go sit in the car to listen to music.  Party over, but at least not too soon.

It seems that some organizations may be getting the clue that they need to be a bit more understanding about their customers traveling with children on the autism spectrum.  An article in The Morning Call mentions that Delta Airlines is developing travel guidelines for families with a developmentally disabled member.  Disney World, Sea World and Busch Gardens have passes to allow autistic children to the fronts of lines to cut down on those meltdowns that stem from long waits.

USA Today ran a similar story earlier this week.

During this time of year when kids are out of school and families want to enjoy the summer, the most important thing to remember when traveling with a developmentally disabled child is planning.  It may take weeks to build a child up to being able to make a trip that will disrupt his routine and expose him to a host of stimulation that may be overwhelming and scary.  Social stories and role playing to practice some situations are a couple of ways to prepare in advance.  Make sure you have the things that your child finds soothing.  And don’t be afraid to let people know - like the airline you’ll be traveling - that you’re traveling with a child with a disability.  It doesn’t have to be a huge deal, but it might help prevent some situations.

As the saying goes, “An ounce of prevention is worth a pound of cure.”

 photo by Ian Britton

A Carnegie Mellonstudy has shown that the difficulty that autistic people face with understanding and functioning in social situations is due to a sort of communication breakdown between the areas that comprise the Theory of Mind centers of the brain.  In layman’s terms, the messages are not getting from point A where they are received to point B where they would be processed.  The researchers used a combination of testing and magnetic imaging to see which areas of the brain were stimulated during the tests. 

Practically, what does this mean?  If the specific centers that need to have connections built up can be identified, then therapies can be tailored to individuals and can also be monitored for effectiveness. 

Here we are again - what three things (I know there are Thursday 13s, but I can only work with 3 at a time) am I thankful for today?

1. Ironically, I am thankful that my last out-of-home job went kaput.  Now, not only do I have even more time to spend with my kids, but I can actually plan fun stuff on weekends! 

2. I am thankful that Gus’s sensory issues don’t extend to his tastebuds.  I know some kids have a great deal of trouble with oral sensory defensiveness, but he doesn’t.  If he didn’t eat, I’d be worried.  He’s already a skinny bean.

3. I am grateful that the Halloween costumes my kids want to wear can be made instead of bought.  Why are we worrying about Halloween now?  Because a) it’s our favorite holiday and b) if I’m going to make costumes (or at least entertain the thought), I need lots of time. 

That’s my good stuff for today.  Please comment with what you’re thankful for today!

 A few weeks ago a friend commented that she didn’t see what the Wilbarger Technique- a specific brushing and joint compression technique - was supposed to do.  I couldn’t really explain it myself, at least not in plain English.  But I think I may have it now.

Picture the brain that has some proprioceptive oversensitivity as a sort of high-strung mother hen.  The parts of the body are her chicks.  Our hen, in addition to being a little high-strung is also not so great at keeping track of those chicks.  Now they tend to stay pretty close to her, but she doesn’t seem to always know that.  So she spends a lot of energy trying to figure out where those guys are!  When she gets worked up, so do the chicks.

But what if we help her out by doing a sort of head count every couple of hours?  Once she knows where her chicks are, she’s happy, she can relax a little and get on with the rest of her henly business (whatever that is).

My best understanding of the protocol is that it helps the body ‘check in’ with itself.  Once the brain knows where everything is, it can calm down and focus better on the other myriad tasks it needs to attend to.

  image from USAToday.com

I purposely avoided this controversy for two reasons.  First, because I know what my son is and what he is not.  He is a very bright child who happens to need extra support in several areas in order to function in the world.  He is not by any means a fool, moron, idiot, or fake as Michael Savage described most autistic children last week.

My second reason for not discussing it was because I didn’t want to add to the Savage getting what he really wanted from making such nasty statements: attention.  He certainly did that, got attention.  So much in fact that one of his big advertisers, Aflac, is pulling their funding from his show.  They spent about $90 million last year.  Oops!

He tried to do some damage control, but I sincerely doubt the sincerity of his stated intentions.  So I’ll just be happy that all the attention has come back to smack him right in his big mouth.

I’ve been thinking about the latest research that parents who tend to be ’socially aloof’ are more likely to have autistic children.  This was how the conversation with my husband went when I first mentioned the findings:

“So they’re saying now that aloof parents are more likely to have autistic kids.”

“Isn’t that just like what they used to say about parents?  I don’t think anyone can say we’re not affectionate toward our kids.”

“Uh…I think they meant aloof toward other people.”

“Oh.  Well, then yeah that would be us.”

Reading the linked article, I saw an exact replica of myself.  My husband’s a little more outgoing, but does sometimes struggle socially.  I tend to be very introverted.  We both have instances of being very repetitive and I can be a bit on the obsessive side.  Being that I’m past the self-blame stage, all I can do is be somewhat amused.  Nothing we can do to change it now, and honestly, I wouldn’t if I could.