Resource: Teaching Independence

Here are a few blog posts that talk about teaching our kids independence.  I like how the author talks about constructively prompting our kids in a way that promotes independence.

http://blogs.psychcentral.com/autism-aspergers/2010/11/teaching-vs-doing/
http://blogs.psychcentral.com/autism-aspergers/2010/11/asking-vs-telling-a-strategy-for-thinking-independence/

– Cassie

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Crippling Our Kids With Kindness

Personally, I’d love to blame all my kid’s difficulties on autism.

Wouldn’t that be convenient?  If no matter what my child did, I could say that it wasn’t his fault and it wasn’t my fault – it was because he has autism? “Aww, I’m sorry my son spit on you, Mrs. Teacher.  But he has autism, and autistic kids do that sometimes, especially if something triggers them.”  Then she’s say, “Oh, that’s okay.  He’s a sweet kid and I’m sure he didn’t mean to spit on me.  It just happened.”  I could nod my head and give her a tissue to clean up the spittle, then as any good, supportive mother would do, offer to help her take a look at her classroom and the way she runs it, so we could figure out what she did that made my kid spit on her.  Then we could make sure she didn’t do it again.  My son would be a good kid, and everyone would be happy.  Wouldn’t that be nice?

You may think I’m exaggerating, but I’m really not – well, not by much.

First, let me say that I don’t have any experience with kids who are severely affected by autism.  I have no idea what they can and can’t do, so in this article I’m not talking about them or their parents.  I don’t have the knowledge to offer a legitimate opinion on how to help them or their families. 

In this article, I’m talking about kids who are mildly or moderately autistic, Asperger’s, high functioning, PDD-NOS or similar.  I’ve worked with hundreds of these kids, their families and educators, and trust me when I say that in doing so I’ve seen a troubling trend. 

Some of us are crippling our children.

We’re doing it out of kindness and the goodness of our hearts, but we’re crippling them nonetheless.  We’re teaching them that autism has made them incapable of controlling themselves.

We don’t say that in so many words.  Instead we tell people, “Oh, I’m sorry that happened.  But you know, he has autism,” and we leave it at that.  Like autism is a get-out-of-jail-free card.  That if we wave it around enough, society will excuse our child’s behavior.  Not only is that delusional on our part (because society won’t, especially when our kids have grown out of the cute, little tyke stage and into the six-feet-tall and hairy stage), but it’s also damaging to our children. 

When we use autism as an excuse for our child’s behavior, we’re telling our kids that not only do they have no responsibility for their actions, they’ve got no control over their actions either.   We’re saying that autism is bigger than they are – that it runs their life.  We’re making them slaves to their autism.  We’re training them to believe that no matter what they do, they can’t change their life to make it better or improve themselves.  We are instilling a self-defeatist attitude that they may never get over. 

Imagine the following, that one of our now grown autistic sons gets a job.  He likes his job.  His co-workers know he’s a little odd, but he’s a good worker so they accept him.  Then one day something happens and he loses his cool.  Major meltdown.  Throwing things and yelling at people.  Eventually he calms down.  He apologizes and says he has autism.  His boss has sympathy for him, but can’t afford to have an employee who may injure his other employees.  Our boy gets fired. 

So, what does our young man do next?  If he believes that he has no control over his autism, he may go find another job, but sooner or later a meltdown will get him fired from that job, too.  And the one after that, and the next one.  Eventually he’ll get fired often enough that he’ll decide that due to his autism, he is unemployable.  He may rant that people don’t understand what it’s like to have autism, or that employers are unfair, or he may believe that he is defective.  Wherever he lays the blame, the important part is that he will quit trying.  He’ll file for state assistance and live in poverty for the rest of his life. 

(I am not making this up.  Go lurk on message boards for folks with autism and read it for yourself.  And while you’re at it, look up how much disability pays – it’s not much.)

Let’s look at another instance.  What if instead, our young man was taught from his early years on, that he is responsible for his actions, whether or not he has autism?  What if he was taught to recognize his areas of strength and weakness, and that through hard work he could either overcome his difficulties or find a way to work around them?  If he had the underlying belief that although autism made his life difficult, he had the means to make his life better?  How would this young man react to being fired from his job?

Hopefully he’d try to figure out why he had the meltdown in the first place.  Maybe that job was a bad fit for him – too noisy, too much social interaction required, too fast-paced or whatever.  Maybe he needs to go talk to someone about learning to control his temper or anxiety better.  Maybe in the future he needs to self-disclose more and perhaps ask his boss for supports.  If our young man has the attitude that he has control over his life in spite of autism, he will eventually be able to find a job where he excels.  It may not be his first job or his tenth job, but he will keep trying until he finds a way to succeed.  His life may not be easy, but he won’t end up sitting at home, cursing humanity, or believing that he’s a broken individual.

So how do we teach our children this attitude, this belief that they can succeed? 

We hold them responsible for their actions.  We help them learn about their strengths and difficulties.  We teach them that they have control over themselves; that even though it may be very hard for them to control themselves, they are capable of learning how to do it.  We teach them to ask for help when they need it and where to go to find it.  We help them learn from their mistakes and celebrate their successes.  And we instill in them that they are smart and capable, that we will help them learn what they need to know, and that we won’t give up on them, no matter what. 

And if they spit on people, they get in trouble.  Even if they have autism.

I am not delusional.  I know that autism can’t be wished away by the power of positive thinking.  No matter how hard we and our children work, there will always be some aspects of autism they struggle with.  To teach our kids that autism is something “they can get over if they try hard enough” would be setting them up for a lifetime of feeling defective – of never being good enough.  Autism causes real problems in their lives.  To ignore those problems damages our kids.  But teaching our kids that because of autism they can’t control any of their problems, damages them as well.

– Cassie

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Marshmallows and Ducks’ Feet

 I’m sorry I’m so late getting this blog post out.  No, wait – actually I’m not sorry.  Not one bit!

I’m actually delighted that I’m late, because I had a great time ditching you all.  Instead of rushing to get the kids off to school yesterday and then spending my morning struggling to think of something profound to say about autism, I was camping on the coast with my family.  At sunrise I was strolling along the beach, arm in arm with my hubby, watching the early morning light tint the waves pink and having fun trying to decipher the stories behind the different footprints we found in the sand.  There were a few virtuous souls out there, jogging their way to health.  We watched them for a while, then followed our noses into town to a bakery famous for its ooey, gooey cinnamon rolls.  (They lived up to their reputation!)  No, I have to say that I didn’t miss you guys at all.

Perhaps I should have felt guilty that I was stepping out of the autism world for a little while.  Actually it wasn’t the autism world, per se, but more the world of responsibilities.  Instead of doing homework this weekend, my kids were eating toasted marshmallows.  (They didn’t eat them so much as ‘accidently’ light them on fire and watch them foam, bubble and char.  Yeah, it wastes food – but you have to admit, those flaming balls of destruction look pretty awesome.)  They went hiking through a grove of eucalyptus to search the canopy for the first arrivals of the monarch butterfly migration.  They stared up at the clusters of fluttering orange wings for a few minutes, then while my daughter sketched, the boys wandered off to ogle a duck’s foot they’d found on the path.  (No duck, just a dried up old foot. Some things are more interesting than butterflies, I guess.)  They rode bicycles and argued and slept late in sleeping bags and ate grilled pizza that was only slightly burned.  It was a trip we couldn’t have taken when they were little because autism would have made it too hard, but we could take it now and we did. 

Maybe I should have felt guilty that I’d pulled them out of speech therapy and geometry and English papers and the never-ending waterfall of homework.  Five years ago I wouldn’t have dreamed of missing a school day to take an extra-long weekend.  School is too important.  My kids’ futures are too important.  But now I realize that every once in a while (and I mean super-duper-rarely-only-once-or-twice-a-year), a little family vacation is pretty important too. 

My kids aren’t getting any younger.  We’re already passed the days when the swings at the park are a big thrill or watching trains go by or wading in the waves.  We’re already to “Isn’t that guy at the snack bar cute?” and “Can we have some money to go into town?” and “Do I really have to turn off my iPod?”  (Although apparently dead duck bits are still fascinating.)  My family is getting older, and if my husband and I blink we’re going to miss it. 

So, no, I don’t feel bad about taking a weekend to step out of the world and enjoy my family.  Geometry can be made up, sunny fall weekends at the beach can’t.  Neither can whatever it is that you and your family like to do.  It may be camping, or bicycling, or watching a movie together or going out for pizza.  Whatever it is, do yourself and your family a favor – take a little time out of your routine to spend some time together.  Make it a mini-vacation, even if it’s just for a few hours.  Leave autism at home as much as you can.   Your child will still have autism, but for a little while don’t let it be the focus of your relationship with him or the focus of your family.  Let it be butterflies or marshmallows or dead ducks.  Take a little time to remember why you had kids in the first place.

And take a little tip from Aunt Cassie.  Don’t waste your time trying to get your kids to ignore whatever disgusting dead thing they find on the trail in favor of the educational exhibit you took them to see.  Instead, let them enjoy their vacation.  And while their attention is focused someplace else, take the opportunity to sneak a smooch with your sweetie.  Remember, it’s your guys’ vacation, too.

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Big Hairy Man Feet

All of a sudden, my son grew big hairy man feet.  He’s got big hairy legs, too, and whiskers on his chin, and hands the size of dinner plates, and a certain eau de manly-man-stink if he misses a shower.  And I just want to know – when did this happen?

It seems like just last month he was an adorable blond toddler, with soft duck-fuzz hair, beautiful blue eyes, and a curiosity that demolished furniture, plumbing, all breakables left within reach, and a few of our friendships.  He gave hugs that melted your heart, then as soon as your back was turned, he’d take apart the toilet to see how it worked or climb to the top of the bookcase to see what was up there.  I couldn’t keep ahead of him.  We were lucky to survive, what with him running through parking lots and his fascination with swimming pools.  But he was so sweet.  Was it really that long ago?

Wasn’t it a few weeks ago he was a three feet tall, holy-terror-tornado, rampaging his way through pre-school and kindergarten?  He was bounced from two preschools before we found special education.  It was a life-saver.  They welcomed my little ball of fire with open arms and helped him learn to slow down – a bit.  He still screamed if it was noisy, and he couldn’t make it through circle time without falling apart, but he learned to write his name and say his numbers and read.  And his hugs were just as sweet.

The primary grades were challenging.  There were tantrums, yelling and tears, and an awful lot of homework – hours of homework.  We had parent-teacher conferences weekly and sometimes daily.  We struggled.  The teachers tried so hard and so did we.  But there were precious times, too – ones I’ll never forget.  Halloween parties – hordes of little goblins running through the dark with glow-sticks and flashlights.  Cutting out mounds of paper snowflakes together and leaving drifts of white triangles all over the floor.  Smearing gobs of frosting on graham crackers, raining down candy and declaring it a gingerbread house.  Throwing Easter eggs into dye cups to see how high you can splash.  Watching fireworks at Legoland, then sleeping all the way home.  They were hard years, but some days I miss them.         

I’m not sure how we made it through upper elementary school.  We had less tears but more yelling.  Pre-algebra wasn’t easy, especially when he was convinced the text-book authors were idiots.  There were medication changes, and more medication changes, and yet more changes.  Essays were hard to write, assignments got lost, books weren’t brought home from school.  His classmates were still very kind, but party invitations quit coming.  At recess the boys and girls stood around in groups and talked, while he still wanted to play in the sandbox.  But he liked school, and he used to smile and wave when I dropped him off.  When I picked him up to take him home, he’d run into my arms and squeeze me tight, big enough and tall enough that I’d have to tell him not to squash me.

By junior high, things were changing.  He’d been out of special ed for years and was now in honors classes.  The work itself wasn’t the hard part – it was sitting still in class and not blurting out the answers, and not telling the teacher she was doing it wrong.  Changes to assignments drove him through the roof and suddenly girl classmates seemed very different than before.  But homework was easier and he could do it himself.  I got fewer telephone calls from the school and while I was glad he was doing well, suddenly I knew I was starting to lose my window into his life.  I began making sure I got my hug each night when he went to bed because I knew then that hugging time doesn’t last forever. 

He’s been in high school a few years now.  Grades come easy to him and homework always gets turned in – I never even see it.  His teachers stop me when they see me, to say that though he still has some rough spots, he’s really doing great.  He’s got a few friends who call him to come over – for Halloween parties and camping and to hang out in the swimming pool.  I drive him over and drop him off, then go on my way, no longer having to hover just to keep him alive. 

When I look back at where we came from, I am amazed.  To tell you the truth, there were times I didn’t know if we’d make it.  It wasn’t easy – those hours spent at the homework table, pouring out more patience than I knew I had, trying to come up with one more way to explain whatever my son was struggling to understand.  Those times at school when I had a sobbing child in my arms and a teacher nicely requesting an immediate conference.  And yet those aren’t what comes first to my mind when I remember those years.  It’s my son sitting in my lap, handing me “Green Eggs and Ham” to read for the tenth time that day.  And house paint dripping from his fingers after he’d gone into the bucket up to his elbows.  And the sweet little face filled with curiosity when my boy brought his latest treasure to share with me.

I look at the great, hairy, soon-to-be-a-man in my house and I can’t even tell you how he got here.  He’s more capable than I ever thought he’d be.  From where we are now I can see a future where he’s more secure and happy than I ever imagined.  From holy little terror, to a mellow young man – how did it happen? 

I don’t know.  But I feel blessed to have been here while it did.

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Blinded by Science

A year or so ago I had the wonderful opportunity to have lunch with several people who are prominent in the field of autism.   It was great.  I found myself at a big table, tucked inbetween a famous author (who has autism and isn’t Temple Grandin) and a researcher from a big university who was conducting studies about teaching social skills to first graders.  I know, awesome, right?  It was.  I was having the time of my life, just sitting there eating my chicken sandwich and listening to everyone talk.  I mean, what was I going to add to the conversation?  Here were a bunch of people who each knew at least twenty times what I did about autism and have the credentials to prove it.  I felt like a junior high kid who accidently wandered onto a college campus and sat at the senior’s lunch table.  I was keeping quiet and trying not to sound like an idiot or dribble food down the front of my shirt.

Then I heard the researcher sitting next to me (I’ll call him Dr. X) talking to the young man to his left.  The young man had Asperger’s and had said he was interested in finding a romantic relationship.  “Hmm,” said Dr. X, “that’s highly unlikely.  After all, the amount of adaptation you and your partner would each need to make in order to sustain a relationship is quite large.”  Or, to translate his academic lingo into the kind of words you and I use, “Sorry dude, but you’re too weird for any girl to like you and even if she did, it would never work.”     

Now, I know Dr. X hadn’t meant to be cruel.  He was looking at the young man as a statistic, as a subject in one of his studies, as a member of a population he was studying under a microscope.  He didn’t see the kid as a lonely, young man who wanted a girlfriend to snuggle; he saw him as ‘subject, 22 years of age, Asperger’s/mild autism, status: seeking relationship’.  He looked at him through the lens of what he knew about autism, and it never occurred to him that he didn’t know a tinker’s darn about people with autism.

Now, I’m not saying Dr. X is dumb – far from it.  Nor am I saying that the studies he’s conducting aren’t shedding valuable light on our methods of teaching first grader’s not to spit on each other, which as the mother of an ex-first grader I consider extremely important.  I’m sure Dr. X is doing a bang-up job and that our autistic kids will be better for his efforts.  What I am saying is that if you think folks with Asperger’s/autism rarely get married, you ought to climb out of your ivory tower and go for a walk-about.  Go find some real adult Aspies and have a look-see.  Before you start making statements (especially to impressionable young men) about the ability for ASRD folks to have a relationship, go study some of the hundreds of thousands of married Aspies out there.   

It’s not like adult Aspies are hard to find.  Just go to any science fiction/fantasy/historical convention in the world, throw a rock into the crowd, then go talk to whomever yelps.  Or go chat with the folks at your nearest engineering firm, science lab or college gaming club.  (Or check universities where they have researchers who don’t have the social skills to know you don’t tell young adults that they’re too weird to get a date.)  In a time when Comic-Con makes the front page of CNN’s website every year, Aspie’s are pretty mainstream and very visible.  While by no means is every engineer, scientist, gamer or convention attendee on the Autism spectrum, Aspies show up in those areas in higher numbers than in areas like telemarketing, cheerleading, middle management and sales.  My point is, it doesn’t take a whole lot of effort to find them.

One of the first things you’ll notice once you start meeting these hordes of adult Aspies, is that a lot of them are female. Mothers, wives, grandmothers, ladies content to be single, and also a whole bunch who are looking for boyfriends.  If this is news to the folks running autism research programs it sure isn’t to the people who sell Princess Leia slave girl costumes.  They’ve known it for about 30 years now, which makes them youngsters compared to the guys who sell Lord of The Rings elf ears, Star Trek’s Yoeman Rand mini-skirts and boots, or Renaissance era bodice making supplies.  There are lot of Aspie/Geek girls out there making the best of what nature gave them in their search for romance.  

And they’re finding it too.  Take a minute to look at: www.offbeatbride.com, where you can find ideas for fandom wedding cakes (think Dr. Who, Transformers, Portal, Lego, Pacman, or mathematical equations); geek wedding favors (like personalized gaming dice, L-O-V-E computer keys, or space invader chocolates); and presents for the wedding party (like life-sized light sabers or cufflinks made from watch-parts.)  Check out Google to see what’s hot in geek wedding dresses.  Zombie brides are in, as are Steampunk, electronic-ala-Tron, superhero, Victorian gothic and the newly popular vintage carnival bride.  (Moms, take notes on all this wedding stuff – you need it one day, trust me.  And don’t be surprised when sometime after that, you’re out shopping for an R2D2 baby bonnet.  Better yet, learn to sew.  It’ll save you trouble in the long run.)  

Back to Dr. X.  The whole reason I’m telling you about this conversation is not to point out that he’s nearsighted when it comes to his research.  It’s to remind you that although our social scientists are a clever bunch of folks who are working really hard, they’ve still got a lot to learn when it comes to autism.  As far as I know, most of them haven’t even checked out the local Star Trek convention to figure out the proper protocol for picking up a Klingon chick or discovered the rules to one-ups-manship when it comes to quoting cult movies.  Until they can explain to me how leadership is determined in a Dungeons and Dragons raiding party, I won’t believe they fully understand social functioning in Aspie-land or the future of our kids.  And don’t you believe them either.  Take what knowledge you can get from them but don’t let their current understanding of autism discourage you or limit your child. 

I’m sure a lot of you reading are still thinking about that young man in the beginning of my story.  You want to know if the poor kid went away thinking he was a mutant who’d never find a sweetheart.  (And you want to kick Dr. X in the shins.)  Don’t worry, I set the guy straight.  It wasn’t hard.  I just pointed to the folks on my right, the famous Aspie couple who’ve made a living the last several years on the lecture tour, talking about their lives together and their relationship.  That boy has got a lot of examples of happy couples out there for inspiration.  Don’t worry, somewhere out there a cute little nerd-girl is waiting for him, Pokemon costume and all.

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