Friday, April 26, 2013

Autism Awareness #13 - The Power of Thank You

Mind your P's and Q's.  Be polite. I was raised with consistent reminders of how to show common courtesy to others.  I can't say I was always successful over the years mind you, but I heard the message often and it did sink in.  My wife and I have done our best to impart that same philosophy into my 3 boys. 

On a related note, I so want my boys to grow up with a strong sense of self worth and self-esteem.  I want them to feel good about who they are, their abilities and know that they are a valued person.  Those with Aspergers struggle a good deal with self-esteem given their desire yet frequent failures to connect with others.  I don't hear as much about self-esteem and those with an autism diagnosis.   I need to check into that more...

At any rate, I wanted to comment on one minor example of manners and self-esteem issues.  It makes me smile and I believe showcases the small victories we parents with kids on the spectrum celebrate.

My son M has an inclination to say 'I know' when you pay him a compliment.  And why not from his perspective as you're obviously stating a fact!  When I tuck him in at night and tell him how proud I am of him and what a good boy he is.  He will lie there and give a dead pan "I know" back.  He's right.  He does know.  Honestly, though, when I hear this my initial thought is one of concern that we are not connecting.  That remains in his own world.  I can celebrate that he's verbal and that he responds for those are things that not always the case with others on the spectrum.  When I stop to think more about it, however, I have come to conclusion that he does know.  It is a fact to him.  He really is a good boy.  Then I smile.  I know his positive self-esteem is there, lurking in the weeds.  At some level I need to get over the response because it doesn't fit the model I have in my head - no different than the French (i.e., don't say "thank you" to a compliment in France - say "do you really think so?")

Even better is that a few weeks back I commented to him that the more appropriate way to respond to comments such as this is "thank you".  I explained in concrete terms that it's not polite to say that when somone pays you a compliment (ah - the hidden curriculum of social interaction raises it's head again).  I suggest him simply say "thank you" even though he might be thinking "I know".  Several nights later I was tucking him in and again I said something to the effect that he is doing a great job in school and I'm so proud of him working so hard.  He looked at me and with a bit of a twinkle in his eye he said "thank you".  I smiled.  He smiled.  He knew he had said the right thing.  I think he also was proud of his ability to translate.  To play the right card at the right time.  A boost to the self-esteem and a demonstration of the power of 'thank you'.  Progress!

Thank you for reading.  =)

Wednesday, April 24, 2013

Autism Awareness #12 - Social Skills & Schools

If I had a nickel for everytime the issue of social skills comes up in conversations about my son and his autism, I could retire and raise margaritas in La Jolla. He doesn't ever bring it up of course.  Why would he?  After all, he has a social and communication disorder.  But it's always on our minds as parents.  My wife and I focus on it a lot.

Social skills are critical to success in life be it academic or elsewhere.  I would contend that social skills are AS IMPORTANT as other academic areas such as math, reading, writing and science. 

Even if you're not fully able to adopt particular social skills, it's important to know how to navigate through them.  Much of the discussion around social skills in the autism community today focus on knowing about the social requirements of society - also referred to as the "Hidden Curriculum" - so they can tweak their behavior, actions, comments, etc.  Social skills are as important for school aged children as they are for adults in the work place and beyond. 

Schools struggle with social skills.  Initially, it was more of an issue of scope and focus.  It has now become a struggle of what, how, and when.  For the first few years at my son's school when we broached the idea of the school addressing social skills we were given the answer that they must focus on academics.  I don't know about you but without good social skills, I never would have passed that horrible calculus class my freshman year in college.  Thank goodness for study groups...  Thankfully our child's school has changed their response the last 2 years or so.  Unfortunately, we are still faced with 2 significant challenges; 1) clarity as to what social skills are and having a curriculum in hand to take action, and 2) available time in the packed school day schedule.

Last year we finally received a willing response from our child's school to include a social goal in his Individualized Education Plan (IEP).  That's when the 2 challenges above became abundantly clear.  The social skills goal was something to the effect of "the student will learn social skills".  In the IEP meeting I recall saying "We can't just have a goal that says he'll learn social skills.  If that's the case, why don't we also have a goal that says he'll learn math skills?"   I cringe when I hear those types of goals.  They are meaningless. There are building blocks within social skills and we need the school to incorporate those.  For example, how to greeting someone, personal space, waiting 10 seconds when attempting to enter an ongoing conversation, not talking for too long about a subject of interest, checking in with the other person.  We did succeed in tightening and refining his IEP goal to include some of these building blocks.  Operationalizing it is another matter entirely.

School systems still don't have a strong answer as to how/when to actually TEACH these skills during the school day.  They've made headway on practicing them but not teaching them in advance.  There seems to be an inclination to highlight the skill within another time period (e.g., we'll weave it into his time with the speech and language specialist) and then have him practice them in the hallway, lunch room, or on the playground.  If we taught math skills like that we would simply be hoping that students would eventually figure out calculus and differential equations! 

We have seen some emphasis of social skill development at school for our son and I'm thrilled about it.  One such example is teacher facilitated play on the playground 2 times/week.  For this, our son's special needs teacher helps him choose a game from a short, preapproved list (e.g., 4 square, tag, etc.) and then recruits students.  The teacher then facilitates getting the game going and keeping it on task for 10-15 minutes of the recess.  This is wonderful and helps set the stage for social interaction.  What it doesn't really do is teach him how to socialize within the context of the game.  That is the secret sauce.  If you don't have the skill to connect with someone - picture a high 5 between 2 kids after a good play - then how can you expect them to utilize that skill in a highly fluid, extremely verbal, fast moving game.  It's a difficult balance.

Awareness and adoption within schools of the need for social skill teaching and practice is a huge step forward.  I'm thankful for the team that works with my child and the openness they have for trying new things.  I also appreciate that they're trying to put 10 pounds of stuff into a 5 pound bag.  But, as I mentioned at the beginning, social skills are AS IMPORTANT as learning key academics.  Without these skills, he will struggle in every day situations throughout his lifetime. 

Monday, April 22, 2013

Autism Awareness #11 - Musings from the Autism Society of Wisconsin Annual Conference

I attended the Autism Society of Wisconsin's Annual conference on Friday and Saturday like I've done for the previous 5 years.  I love going.  I'm becoming a veteran of this community based on the fact that much of the content in presentations were reminders of things to think about.  There were, however, some very interesting presentations and trends. I'll highlight two here.

There is a strong growing emphasis in the autism community on transitioning to adulthood and employment.  I'm thrilled to see that because even though my son is only 10, it takes us a long time to effect change even in our own situation.  The more planning and awareness we have, the more effective we can be at planting seeds along the way and developing skills that will help him.  Just several years back there was precious little on how your son/daughter could transition out of high school and into the workforce/community.  One presentation quoted research that only 15% of adults with autism are employed.  That is the lowest figure of all disabled groups.  That needs to change.

I attended Judy Endow's presentation related to the "hidden curriculum" and the work place. As always, it was very pragmatic and spot on.  One of her vignettes was about a man with Aspergers and how his rigid thinking got him into trouble.  This man had a rule to always say hi to 2 collegaues in the morning to show that he was a connected and engaged.  He happened to make many of these comments to an attractive woman in the office.  He'd say appropriate things like "you look nice today" but then also push far beyond the acceptable with comments like "that tight blouse really makes you look hot".  Even that comment seemed onocuous to him.  He didn't understand the hidden curriculum.  The fellow worker finally complained and he was brought into the bosses office and told to stop those comments.  He did so only to move on to worse comments that got him fired.

A second presentation highlighted a family's journey with their son as he transitioned out of high school (at age 21) into the work force at a plumbing distributor.  They talked about the openness and willingness of the employer to welcome him and work within his abilities but also the fact that he does a needed job (data entry on packing slips, paper shredding, etc.).  He only works 2 hours/day and has a job coach with him all the time to help keep him on task occasionally.  The presentation showcased how it took the school district, engaged parents and an open minded employer working together to figure out what would work for all parties.  It's a great success story.

These presentations reminded me of things to be cognizant of but it also reiterated in my mind what I want for my own son.  I want him to dream big - sorting mail or janitorial work is perfectly acceptable work - but I don't want that to be where the bar is for him.  I want him to be the CEO some day of his own company if he so chooses.  I envision building a company where the business model is structured around his abilities.  Where the hours reinforce how he works (if he wants to be programming at 2 in the morning, so be it).  I don't have a crystal clear vision of the future but this conference and these presentations helped reinforce my desire to think bigger and to consider critical issues now, well before my son steps out of high school.

Tuesday, April 16, 2013

Autism Awareness #10 - Knock Knock. Who's there?

Humor has always been a big part of my life.  I'm not a traditional joke teller like my friend Joe Hanus.  I'm more of a situational humor/story telling kind of a guy.  I love to laugh because it feels good and I love to find the funny in any situation. I might over do it occasionally.  I made a New Years resolution a few years back to tell jokes other people think are funny.  I made it to about Feb 3rd.  It's not that easy.

At any rate, humor is so engrained in cultural issues and social nuance.  If you don't know a social rule or understand a social stigma, you may not get the joke that bends/breaks that rule.  I learned that very directly when living in Poland for 2 1/2 years with the Peace Corps back in the early 90's.  Note - I am really supressing the desire to make a "polish joke" quip here...  I knew that as soon as I understood a joke told by a native speaker, I was really getting somewhere. 

My son loves Mr. Bean (so do I for that matter.  He's pretty funny).  Why does he love him so much?  Consider that Mr. Beam doesn't talk much and his humor is very physical.  He also likes Lucille Ball and the Three Stooges because of the plentiful physical expressions.  He's not exclusively into just that kind of humor but it's a strong draw for him.  Can't blame him really.

Over the last few months he went through a stint of creating his own comics.  That has been fun to see.  The last comic I recall went like this.  First frame - 2 guys standing around.  Second frame - first guy says hi to the other guy.  Final frame - a comet comes out of the sky and squishes one of them (with sound effects).  The way I figure it, at least the one guy said hi to other.  That's a start.  =)  So there you go.

He's even told a few original jokes lately which has been fun to witness.  I must admit, though, I didn't get 'em. I guess that's because we speak different languages.

Saturday, April 13, 2013

Autism Awareness #9 - Just shut up and listen (I tell myself)

Listening is tough.  As an extrovert and someone in the sales and marketing profession I can tell you how critical that skill is and how difficult it can be sometimes.  I don't always do a great job of it. But we need to.  We need to listen more to what people on the autism spectrum are saying.

One such way of listening is by reading books and blogs of people on the spectrum.  They have A LOT to say.  This has proven to be very insightful for me especially when you have those Oh-My-Gosh-I-Do-That types of moments.  In addition, I think the forum seems to work well for the people doing the writing as it's on their terms and doesn't require all the "social stuff" that happens in a face-to-face conversation or a phone call.

Here are a few of those people who you need to follow:

  • The Third Glance. An autistic woman (refers to herself as E) writes wonderfully of her life and experiences with autism.  She is a PhD student.  The Third Glance refers to the need for people to look 3 times at her.  On the first glance she passes.  She seems "normal".  On the second glance, you see she flaps when excited, jumps at the slightest sound, wears the same clothes everyday, and requires extreme routine.  She describes the third glance so elequently. "I am the person I am today, because there are a few people who took that third glance. And they saw a compassionate, excited, quirky, passionate person.  They saw someone who is brutally honest, exceptionally aware of her surroundings, keenly observant, meticulous, interesting and firecely passionate: someone show is worthwhile, and who will be a loyal friend, if you give her a chance 
  • Garry Burge. A "40 something" man from Brisbane Australia who writes a great deal about Asbergers.  He has a YouTube channel and a great blog.  
  • Judy Endow.  Judy is a fantastic person and is very active in the Wisconsin autism community.  She is self described on her bio as "an author and international speaker on a variet of autism-related topics...  Judy maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts and other agencies.  Besides having autism herself, she is the parent of three now grown sons, one of whom is on the autism spectrum."  I've read a good many of her books and her blog posts.  One story I was so amazed by was when she sat with her doctor to receive the diagnosis of her son's autism only to have the doctor turn and say "now let's talk about your autism".
Please take a few minutes to listen to these authors.

Special thanks to Ariane Zurcher for her blog called Emma's Hope Book and her consistent tweets.  I've expanded my list of these types of resources based on her recommendations.

Thursday, April 11, 2013

Autism Awareness #8 - My Favorite Shirt

Do you have a favorite shirt or jeans?  The one that fits you like a glove.  I love that feeling.  Putting my favorite shirt on in the morning gives me a little extra boost.  I'm stylin'!  On the flip side is that wool sweater in my closet that just itches like crazy.  I could wear 3 shirts underneath it and it would still itch!  Every time I wear it I spend half the day wondering why I put the darn thing on.

Many people on the autism spectrum talk of extreme sensitivities when it comes to clothing.  I can't imagine the struggle to have most of my clothes feel like that annoying wool sweater.  How could you sit in school and pay attention?  How could you be productive at work?  There are improvements to things like shirt tags.  I hate those darn things too.  Luckily, some companies print the tag right onto the clothing now.  Why didn't they think of that a long time ago?

On a related note, there are lots of discussions in the autism community about tactile sensitivities and how people struggle with transitions between environments such as changing out of your PJs and into school clothes.  In some small way I can relate because I HATE climbing out of my warm bed in the winter to a cold house.  Levity aside, to deal with an issue like this must be so difficult.

Luckily, my son doesn't seem to have an issue with clothing.  That's just one short straw he didn't pull I guess.  Sound, however, is an entirely different matter and interestingly, turning lights on in the morning is another painful one.  I was woken many a morning by my bedroom lights getting flicked on and the covers pulled off me.  I guess I'll just fish around for that favorite shirt in the dark.

Wednesday, April 10, 2013

Autism Awareness #7 - I Come From a Land of... Autism?

Sorry about the somewhat obscure 80's Men At Work song reference in this entry's title.  I just love Colin Hay...  And it'll make sense as you read on.

I've read that sometimes when people get ill or have an ailment that sticks with them for a long time, they can start to look at that ailment as a companion.  Not a friend mind you, but something/someone that is with you a lot.  I've also seen blogs, posts on Facebook, and other writing by people (mostly adults) on the autism spectrum stating unequivically that they are NOT disabled.  Granted, this tends to come from people with Aspergers as opposed to those more profoundly impacted by Autism.  It's an interesting notion though isn't it?  They simply are what they are.

For some time now my son has referred to his autism more like a place that he's from or the different lifeform that he is.  Since he turned 9 or so and began to be able to verbalize to us his awareness of being on the autism spectrum, he would say things like "I am autism".   I think his phrasing is more about a lack of vocabulary, but I can't help but see the beauty in it.  For him there was never an event that triggered the onset of autism.  He simply has been the way he is his entire life.  It is him. Why not describe it as the place where you're from? 

What does that make me?  How about you?

I wonder if there are any sociology studies of the "autism community" and how it defines people on the spectrum.  How does being on the spectrum bring people together?  Can you really be from Autism?  Anyone know of anything?

On the other side of the coin, though, I don't want autism to define him.  To limit him. Or to be the excuse we go to when things are difficult.  We push for equal opportunity for him and our other 2 kids.  My wife and I are very open about discussing autism and it's impacts on our lives.  Yet I hope that this openness doesn't backfire on him some day.  I must admit that there are days when I fear that our openness is a self-imposed scarlet letter of some sort.

Even with those concerns I still fall back on the basics of being yourself.  Just like Oscar Wilde said “Be yourself; everyone else is already taken.”

Monday, April 8, 2013

Autism Awareness #6 - Sleep Troubles

Sleep is awesome.  Especially in a good bed.  I love a good night's rest but I probably don't get as much on a nightly basis as a doctor would suggest.  That's nothing, though, compared to what some people on the autism spectrum deal with.  A 2009 study by the University of Pennsylvania Schools of Nursing and Medicine and the Center for Autism Research in Philadelphia (see the study here) showed that somewhere between 60% - 75% of kids with autism have sleep problems.  Holy cow.

Unfortunately, my son is one of them.  It's not uncommon for us to find him wide awake 2-3 hours after he's gone to bed.  We've tried lots of things - meds, quite reading, daily exercise, etc.  Sometimes things are succesful and sometimes not.  When I'm heading to bed and I check on him, I sometimes ask "What are you thinking about?"  Invariably, he can't answer.  I'm hopeful that will change as I've heard from other parents that this sort of thing played out with them as well.

You, your spouse, friends, or co-workers all may struggle at one point or another with lack of sleep.  Remember how it impacted you.  Keep that in mind when interactiving with someone who has a social and communication disorder.  Talk about having the cards stacked against you sometimes.

Sunday, April 7, 2013

Autism Awareness #5 - Literal Meanings

I am the king of slang.  I didn't realize it until I joined the Peace Corps back in '91.  As I engaged with Poles throughout my time in Poland, I found that I was using much more slang than I realized.  In some ways, speaking to my son is the same experience as it requires the same level of "foreign language awareness". 

A key to remember when talking to people on the autism spectrum is to minimize your use of slang.  Keep it simple.  Keep it concrete.  Keep it real.

Over the last 2 years, M has become more aware of 2nd meanings and slang.  There still is a strong propensity toward literal interpretations but he has become somewhat more flexible.  That has led to much more entertaining conversations.  Last night was a good example. 

He was putting on his pajamas and getting ready for bed.  I walked in and found him standing in his bedroom in his boxers.  He was pulling on the front of his boxers incrementallly with both hands making funny "pfff"  noises.  My wife and I asked what he was doing and he looked up at us with a twinkle in his eye "I'm boxing". 

That skill will serve him well in the future.

Saturday, April 6, 2013

Autism Awareness #4 - Deep Interests

Do you have a hobby or an interest?  Maybe a collection?  Me too.  As a kid it was baseball cards, stamps, coins and beer cans for me.  I still have a bunch in a closet upstairs.  At any rate, many of us have some semblance of an interest in something be it a sport, a collection, history, etc.

People on the autism spectrum have interests too.  In the early days, my son was fascinated by spinning wheels and water.  Something right out of the autism brochure you'd pull from the doctor's office.  I remember when he was 2 he sat on the driveway and pulled a washcloth out of bucket of water and suds for close to an hour while I washed the car.  He sat so still and was so amazed by what he saw.  I wish I could see the wonder in simple things like that.

I've met people on the autism spectrum with all sorts of deep interests like hairless dogs, the Simpsons, or particular movies and movie characters!  The desire to focus, the ability to memorize all the details and the skill to focus so deeply, and often for so long at a stretch, on these topics is really amazing.  With all of our multi-tasking at home and at work, I can't help but want to emulate them.  Their deep interests are the antithesis of Attention Deficit Disorder.

Interestingly, my son doesn't have really deep interests.  I describe him as a skipping stone along a smooth lake.  Interests come and go.  Novelty is what drives him.  There are recurring themes but he moves from one to another relatively quickly.  What's the same between my son and many others on the autism spectrum is that for the short stints, his interest is almost all consuming.  The last 2 days it's been a notebook with notes on the tricks he's learning on his razor scooter.  Before that it was bottlecap pins made by taping safety pins to beer bottle caps.

I love the deep interests.  I love when parents and friends support those interests.  I crave for the ability to focus in a similar manner.  Every once and a while I'd like to be something other than 'Master of many and expert of none'.

Friday, April 5, 2013

Autism Awareness #3 - Sibling rivalries

I grew up in a big family - 7 kids.  Yours.  Mine.  Ours.  I'm intimately familiar with sibling rivalries whether it was sports and competition, the seemingly endless pranks like short sheeting beds, or just the day-to-day stuff that drives each other crazy.  I get it.  However, I didn't have a sibling with a social and communication disorder.

The rivalries between my sons are not "normal" stuff like I mentioned above.  They are rarely obvious and so filled with the complexities of autism that they make them difficult to identify and navigate through.  The rivalries are really when his brothers push too hard, take too much charge of situations, or don't let games play out.  M's best friend is his little brother.  In some ways, though, the relationship is inverted as his little brother has been raised around therapists.  He knows how to direct M.  That's all fine and well until M has had enough.  But they don't really compete in the traditional sense.

A sizable struggle throughout is that M's brothers don't know how to monitor where he is at, what's causing him issues and when he's had enough.  Not that it's all on them to adopt but tracking M's status is an important skill to have if you want to connect withhim. From the outside when things go wrong it looks like M's emotional state goes from 0-60 in a second.  Tracking that is hard enough for my wife and I.  What comes out is a torrent of emotion. This is so polar opposite of his typical quite and kind behavior. It shocks my wife and I but really hits home on his siblings because his angst is pointed at them.  Hurt feelings are exascerbated because he doesn't always have the right vocabulary to access so he uses words like "hate" and statements like "I wish I had a new family".  Those things are tough to hear from a sibling especially when you don't see how you've hurt him.  It's difficult to hear when you're 8 that talking too loud causes you're brother to hate you.  That's not the same as bugging each other in the back seat of the station wagon or a fist fight with a sibling in your teens.

So my request to you is this.  If you hear a parent like me talk about sibling issues when one is on the autism spectrum, please don't respond with blanket statements like "don't all siblings drive each other nuts once in awhile" or "that's just so normal".  At some level I'd agree with you but what's different here is the fragility of the situation.  What you think might be supporting comments may come off as dismissive.  As a parent of a child with autism, I'm hyper senstive to dismissive comments because I've been fighting for his needs for so long.  Instead, try a supporting statement like "that's got to be difficult to see happen" or "that must be tough for all of you guys".  Those types of statements will make all difference.

Thursday, April 4, 2013

Autism Awareness #2 - In bed but not sleeping

I travel a lot.  Planes mostly but sometimes by car for local trips.  Putting my son to bed feels like a plane trip.  Why you as?  Well, you know how you arrive at the gate good and early and they board on time and everyone gets to their seats only to pull away from the gate to sit on the tarmac?  Rumor has it that the grounds crew's primary motivation is to simply "leave" on time. 

Sometimes putting my son to bed feels like that.  My wife and I focus on having a consistent bedtime process but I know darn well he will just lay in bed, wide awake for hours.  At least sitting on the tarmac I can read a book or possibly take a nap.  In this case, though, I'm rarely sure what he's thinking about.  I don't want to just leave on time.  I want the darn plane to take off!

I check on him 2-3 hours later when I'm going to bed.  Most often he's awake. I kneel down beside him and on occasion ask him what he's thinking about.  He always pauses and unless something really big is happening the next day (like Christmas, departing for vacation, etc.), he responds "I don't know".

From presentations at the Autism Society of Wisconsin's Annual Conference by the likes of people like Judy Endow, I have a pretty good idea of what he's doing.  He's processing.  I guess it's kind of like when I can't get to sleep because I'm worried about that presentation, the mortgage, or a sick loved one.  At her keynote a few years ago, Judy talked of going to New York to places like Times Square.  She talked of lieing in bed at night and reliving theprocess.  She saw in incredible detail all the images, the sounds, the smells.  I think that's what my son is doing in some way.  His answer of  "I don't know" really means he simply can't express all the things that are going on in his head.  Is he reliving the past in exquisite detail or just repeating the same thought over and over like he's stuck?  I don't know.

The whole concept just scares me.  I try to focus on the fact that he may be reliving all the wonderful things that happen to him.  But I also know he is processing the bad things.  He clearly gets less sleep than other kids but this time seems to be critical for him to make sense of the world.

My hope is that he'll be able to express to me and his Mom some day what he's thinking about so that I may help him in some way work through what he's thinking and feeling.  For now, I do my best to give him time to do so.  I hope that's the right decision.

Wednesday, April 3, 2013

Autism Awareness Month - How has my awareness changed?

I thought one way to honor my son during autism awareness month is to post a thought each day about what he and his autism have taught me.  How has my awareness improved?  Frankly, I could pop off 30 things off the top of my head but you'd get overwhelmed.  Heck.  Maybe that's the first topic - getting overwhelmed. 

Sensory overload is a big deal for those on the spectrum. For my son.

A few days ago, my other two sons were struggling to understand why their brother was so upset. He was able to communicate to me that there was just too much noise. To you and I, it was just a busy household of kids playing. But, I told his brothers that it was too loud for him. It's easy to empathize a physical handicap. If he had no legs I think we'd more easily understand why the staircase would be frustrating. But, typical noise being too loud for him just didn't really compute for his brothers.   To help them, I suggested that they imagine that everyone around throughout an entire day screamed. All out screaming. Me. Mom. Each other. Friends. Teachers. People at the grocery store. Everywhere. With that imagine in mind, I asked them "How would you feel by dinner time?"

We agreed to try and be more sensitive to his needs.  Headphones aren't always in reach for him so we need to do our best to adjust our actions and our environment.  It's a small modification.