Thursday, July 23, 2009

My Boys

Although the fact that Things 1 & 2 have Asperger's Syndrome is listed in my little bio to your right, I've yet to write about what it is and what it means to me, to them, and our family.  The kids and I leave for Road Trip '09 on July 31st and because we will be meeting up with my whores, the Vegas Show Girls, I thought this would be a good time to bring up the subject of Asperger's because Yo, Mel, and Christy have never met the Things and forewarned is forearmed!  (Shelly is their Stepgrandmonster so she already knows how brilliant - and difficult - they can be. :)

This short summary of Asperger's is by Nancy Mucklow and is the best description I've found yet for what Asperger's is:

Asperger Syndrome is a type of autism, and autism is a neurological disorder that affects the way a person interacts with others and his or her world. It’s not a mental illness, and it is not caused by weak parenting. In its more severe forms, it’s a disorder because it causes disorder in the life of the child. In its milder forms, it is more of a marked difference from the norm. In our culture, which judges people on the way they interact with others, these disorder-differences can have a profound impact on a person’s life.

You’ve probably heard the parents complaining about the difficulties they’ve had with the child in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the child’s responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a “mind blindness,” one that causes the person to stumble and bump into complex social situations that they can’t “see.”

Yet by effectively “blinding” the mind to certain aspects of daily life, Asperger Syndrome enables the child’s mind to focus in a way that most of us are incapable of. They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians.

It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent. While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people.

Her summary is only part of the entire article which she wrote especially for Grandparent's of kids with Asperger's.  If you're at all interested, the whole article is available here.  Click on 'Family Matters' in the left column and it is the first link listed.

Things 1 & 2 fall into the "moderate" category of Asperger's, with Thing 1 presenting as slightly more "Aspie" than Thing 2.  Thing 2 has two common co-occurring issues in Aspie kids, severe depressive disorder and ADHD, both of which he takes medication for.  I'm also pretty sure that Thing 1 has some OCD issues but because they do not interfere with his day to day life I'm not worried about them and he isn't under treatment.

Talking to the Things is sort of like talking to Bill Nye the Science Guy on speed.  Or an encyclopedia read by that speed reader who used to do the teeny tiny car toy commercials.  Their current obsessions are politics (they are firmly in the liberal democrat camp), religion (Thing 1 is a militant atheist and Thing 2 is agnostic but much more open minded than his brother) and all things scientific.  Scientist Genius Brother *frequently* comes to my rescue and the boys call him once or twice a month to settle disagreements on the magnetic field of the earth, answer questions about the possibility of non-carbon based life forms on other planets and tell them what absolute zero is.  (Apparently it is different than just plain old zero.  Who knew?)  Thank GOD their uncle is a genius because most of the time I haven't got a clue what the hell the boys are talking about.

Reading people's body language and facial expressions is not something they can do without some help and prompting which means that they often talk LONG after their audience is bored with the topic and they haven't got a clue if someone is ticked off at them until they are specifically told.  Or thwacked on the head.  Whatever.

I learned long ago that getting upset, yelling and screaming or spanking them just escalates any behavior that I'm trying to stop.  We work on a lot of redirection, correction and explanation.  Thing 1 especially wants a rational explanation for every instruction he gets so we are currently working on just following my instructions and asking for explanations later because I can't always explain all my rationale to him right when I'm telling him to stop/start/change whatever it is he's doing at the time.  If he can do this by the time he is 16 I'll be happy.  Right now it's all practice all the time.  And lots of wine for me.

Thing 1 also is working on the tone of voice he says things in.  About 90% of what comes out of his mouth is just fine as far as the words go but the tone of voice he uses makes him sound like a total and complete asshole.  He comes across like a condescending prick and we're trying to help him be more aware of HOW he says things as well as what words he uses.  Some days it feels like a losing battle but we have to get him to understand and moderate his tone or else he is going to get his ass kicked.  A lot.

Thing 2 has struggled with social issues at school for a very long time but seems to be doing very well at a new school that he started at last November.  He wants friends, he wants to do social things but has a hard time cracking the social behavior norm codes that other kids expect from him.  Dungeons & Dragons, video games and internet sites have truly been a godsend for him and he has a few close friends with hopes for more next year.  Funnily enough, he gets along GREAT with girls and kids older and younger than he is.  It's his peers that he has the most trouble with.

Newsweek magazine published an article not long ago about autism and Ari Ne'eman, the 21 year old founder of the Autistic Self-Advocacy Network.  It was fascinating for me to read not just because of the information but because Ari sounds so much like my boys.  I hope that we can teach them to be as successful in the world as he has been.

But right now it isn't easy.

5 comments:

Yo said...

thank you for sharing :D i've been meaning to ask you about activities, foods, etc, we might want to avoid while you're here.

they are going to love phill. he was a political science major. he knows history and a LOT of strange facts. and he's a geek with a bunch of video games who can speak geek fluently.

heading over to read the rest of the articles.

Frogdancer said...

David2 is currently studying 'Curious Incident of the dog in the night time' in English. fascinating stuff (if you don't have to deal with it every day, I guess.)

Tone of voice is something that every teenager needs to learn.... aspie or not!!!! *sigh*

Nana said...

I like this definition, too. Typical is their unability to understand "humble" or to recognize "arrogance." It challenges us to be tolerant (even if they aren't) and to be clear (but not punitive.)

Shelly... said...

Great post! I know I need to work on my tolerance with them (well, children in general, who are we kidding)...but look forward to seeing you all soon!!!!

Christy said...

First of all, I was amazed by how well you dealt with the kids on our trip--I'm certain I wouldn't have been as easy going with some things as you. You're a terrific mom and I think all 3 of them are really lucky to have you.

And the boys, they are terrific! I absolutely loved them! They're great kids and I thought they handled all of us whores being around them pretty fabulously!

Thanks for the article links--I wish I would've read these before I met them (but hopefully I did okay with them.)