Archive | October, 2010

Yes Wii Can!

26 Oct

As a self-proclaimed Luddite, technology is generally NOT my favorite thing.  It certainly isn’t the first place I turn for a solution.  My husband on the other hand, is my polar opposite.  He lives for geeky things, being an early, if not bleeding edge, adopter of the latest and greatest techy gadgets to surface. I am embarrassed to say that during our early dating days, I sent him into nirvana, not as you might imagine, but by giving him the newest geeky toy – one of the very first GPS navigators!  (This was back in the day when only military people had GPS!)  Needless to say, I had no clue what I was buying – but he was ecstatic!  🙂

Suffice it to say, I am in the minority when it comes to technological interest, but our home is filled to the brim with geekiness.  We may have only five people in the family, but we have 6 computers, PDAs, iPods, GPSs, gaming systems, tvs….and the list goes on…and on…  “Screen time” (defined as free time to play on anything with a screen, such as tv, video game, computer, etc.) is the most highly sought reward for my kids….who could happily spend hours each day glued to a screen (barely pausing for a potty break), if allowed.  (In reality, we limit ‘screen time’ to a maximum of one hour per day…and only after all chores and homework are complete.)   I stand alone in my disdain for electronics, succumbing to their power only at the insistence of my tech-evangelizing hubby.

So, I am both surprised and humbled to stand before you today as a technology convert and declare that the Wii game system has proven to be a huge boon to my Aspie son.  Yes, let me repeat that – I love the Wii!!!

From a very young age Gregory has been reluctant to attempt new things due to his fear of failure and/or the unknown.  (I have come to learn that this trait is quite common among Aspies, but of course, I didn’t know that then….)  Frequently, I would have to work so hard to coax him to try something I thought he would enjoy, whether it was a new piece of playground equipment, a new food, or a new activity, sport or game.  Many times, I would just have to force him into the new experience, grabbing hold of him as we both zoomed down a slide or ran through a sprinkler.  Sometimes his first response was positive, but mostly, after being forced to try something new, he would retreat to ponder the experience by himself.

Greg’s resistance was particularly strong when it came to physical things, like playing sports, sledding or riding a bike.  It seemed a bit like a chicken and egg dilemma…was he resistant because of poor balance, stamina and coordination, or did he suffer from these things because he was resistant to participate actively?  I couldn’t say, but assuming practice would help improve his skills and thus his attitude, we persisted in coaxing/forcing Gregory to keep trying all the great American past times…soccer, t-ball, basketball, swimming, tennis, etc….  These attempts had rather dismal results, to say the least, and Gregory continued to resist.

And then, the Wii entered our lives.  The kids received the Wii game system a few years ago.  Surprisingly, we weren’t among the early adopters in this case, because I had resisted bringing another ‘screen’ into the house to dominate our children’s attention.  But Barry’s geeky proclivities eventually won out.  The Wii appeared on Christmas morning to joyous acclaim and was played by one or another screen-obsessed person for the next 14 hours!  (sic).

For the most part, Gregory would stand back, closely observing the others as they maneuvered through the new interactive games, such as tennis, bowling, baseball, etc.  He wouldn’t actually participate himself, but was avidly participating vicariously, as he watched and cheered on his siblings.  When we finally talked Greg into trying one or another of the games, he would get frustrated and quit at the very first sign of ‘failure’.  We tried to encourage him, saying it would take some practice to learn, but he was not willing to persevere.

So, I was more than a little surprised when, a few days after Christmas while no one else was around, I saw Gregory playing baseball on the Wii.  “Hey, Greg…I’m glad to see you’re trying the Wii!” I said.  He looked slightly abashed, mumbled something and promptly exited the game.  I apologized for interrupting him and tried to talk him into continuing, but he refused.  What a shame…I was sorry I had mentioned anything…

So the next time I ‘caught’ him playing, I held my tongue – I had learned my lesson!  I pretended not to notice him there and carried on with my business.  He was in deep concentration, trying to learn the rules and the technique of Wii Baseball – on his own terms.  This MO continued over the next few days, with Gregory exiting abruptly, anytime someone commented on his game or had the audacity to try to join him in play.  Eventually though, he gained enough confidence to allow others to watch and even join his game.  He was still happiest playing on his own, but he came to tolerate when he had to share the game with his siblings.

And then, the most amazing thing happened…One day out of the blue, Gregory asked his Dad to come outside and play catch with him!!!  We were stunned, because for years Greg had refused to learn to throw and catch a ball.  When Barry was teaching Greg’s older brother Daniel to throw, catch and hit a baseball (without must finesse unfortunately, being a Brit who confused cricket with baseball 🙂 ), he tried repeatedly, but unsuccessfully to involve Greg in the training sessions.  Gregory wanted no part of baseball.  He stubbornly refused to even try to learn, I believe once again, due to fear of failure.

But the Wii, that wonderful bit of technology, had enabled Gregory to gain an understanding of baseball in a fun, non-threatening way…a way that Greg could relate to using characters (Miis) that he created, but were not himThese characters could fail, so that Gregory wouldn’t have to!  He used these Miis to show him the ropes, develop his skills and demonstrate how fun the sport could be, until eventually Greg was ready to try it himself in real life.

So that long-awaited day arrived and Daddy was only too eager to play catch with his son.  In spite of his virtual skills developed over weeks of playing Wii Sports, Gregory still struggled to learn the actual skills.  But the important thing is that he was at last willing to try….and willing to fail.  Today he is quite proficient at playing catch, although his form is rather unorthodox.  He’ll probably never be a great ball player, but he has developed new-found physical skills and emotional resilience as a result of this experience.

Greg has followed a similar road to learning the basics of bowling and tennis too.  He started playing these games in the virtual world of Wii and subsequently was willing to try them in the real world.  Better yet, as a result of these learning experiences, Greg has dramatically improved his willingness to try new things – of all sorts, from foods to books to activities…  That debilitating fear of failure or the unknown doesn’t seem to hold him back quite so much anymore.  And while he may never be a ‘thrill-seeking, rush-headlong-into-new-experiences’ type of person, today he is, at least, open to the possibilities.  All thanks to the Wii and its virtual world where learning by trial and error can be fun.

Technology – it’s a wonderful thing…sometimes….  (Just don’t tell my husband I said so!  🙂 )

The number one benefit of information technology is that it empowers people to do what they want to do. It lets people be creative. It lets people be productive. It lets people learn things they didn’t think they could learn before, and so in a sense it is all about potential.

– Steve Ballmer

Advertisements

On His Own?

12 Oct

When you look at your 10 year old child and dream of his future, do those dreams include having him live with you forever?  Mine sure didn’t…

Last fall, I attended a certificate program in Special Education and Autism at the local community college.  Gregory had been diagnosed with Aspergers Syndrome (AS) the year before and I was still actively trying to learn as much as I could about the disorder and treatments.  The course required that each of us interview an Autism Service Provider and prepare a presentation about their services. 

Gregory had been attending a therapeutic social skills group for boys his age at a nearby mental health center for about 6 months.  I knew that this center also serviced adults on the spectrum, so I opted to interview the director of the Adult Aspergers Services Group (who also happened to lead Greg’s AS group).  Happily, the director (Eve) was most willing to meet with me and discuss the services offered to adults on the spectrum.  So, I prepared my set of questions and set off for the interview, feeling upbeat and studious.

During our discussion, Eve informed me that this group (adults over 21, with AS, High-Functioning Autism or PDD-NOS) is very under-served, with some people having to travel over two hours to participate in a program because nothing closer is currently available.  Most of these individuals had not received any type of services as children and had been misdiagnosed, if diagnosed at all.  Due to their generally poor inter-personal skills, most of the group members are un[der]employed, still live with their elderly parents and have very few friends or spouses.  This clinic offers these individuals a variety of different programs, including counseling, college planning, workforce skills, personal/hygiene, life skills, social skills and recreation.

So think about this…  Most of the participants in Eve’s programs are college graduates and in many cases are highly intelligent.  But due to their quirky behaviors and inadequate social skills associated with Aspergers Syndrome, they are frequently unable to obtain and/or retain meaningful, gainful employment.  Since their employment is so limited, these individuals cannot afford to live independently.  In most cases, these highly intelligent, highly skilled individuals have no option but to live with parents in the bedrooms of their childhood.   OK, that’s not ideal you might think, but living with your parents isn’t all bad, right?

But what happens when their elderly parents become infirm or pass away?  These Aspies, unable to support themselves or function adequately within society, frequently fall under the auspices of the Division of Developmental Disabilities (DDD) and are put onto waiting lists to join a group home.  The DDD is set-up to provide a certain level of support (financial and otherwise) for adults who are developmentally unable to take care of themselves and live independently.

The problem comes with the rapidly growing backlog of people needing placement in group homes.  With 1 in 100 children currently being diagnosed with Autism (according to the Centers for Disease Control and Prevention), this is the fastest growing developmental disability in the US.  Without adequate treatment, these children will grow into adults who require a lifetime of continuing services from the DDD.  Although there is already a significant shortage of DDD group homes and other appropriate facilities, there is currently no plan in place to meet the needs of this rapidly expanding population.

As alarming as those facts sounded, they didn’t touch me directly until Eve casually said, “So, you should put Gregory onto the waiting list right now.  Then, by the time he needs it, there might be a facility available for him.”  I blanched and struggled to understand what she was telling me.  I must have misunderstood.  “Do you mean that you think Gregory will never be able to live independently?” I asked in shock…  That couldn’t really be what she meant – She worked with Gregory – She knew how bright and talented he was.   Eve didn’t answer directly.  She looked at me sadly and nodded.

And with that, my world shifted on its axis.  Confused and reeling from the news, I couldn’t think straight.  “No!!!” I wanted to shout, “That can’t be true!”  But I didn’t.  I am sure my face and body language conveyed my distress, but I tried to calmly gather my papers, thank her for her time and exit as quickly as possible.  Going down in the elevator, I shook my head in denial as tears welled up in my eyes.  I held myself together until I got to my car…and then the floodgates of despair opened.

Suddenly, I was seeing the future in a different light.  The possibilities were not bright, wide open and endless as I had once thought.  Gone were my hopes of Gregory making his own way in the world – finding success and fulfillment through his career of choice.  Gone were my hopes of holding a grandchild in my arms while Gregory and his wonderful future wife look on proudly.  Gone were my dreams of globe-trotting to exotic ports with my husband during our empty-nest years.  Instead the future looked dark and bleak and hopeless.

I cried and cried, trying to get my head around this future that I had never imagined.  Of course, I was willing to do whatever needed to be done to help and support my son, but would he really need all that?  Yes, Greg has his quirks and struggles with some things, but overall he is doing well in school, managing things at home and progressing well.  Surely, he would one day be able to live on his own…

But as I thought about why Eve made her recommendation, I came to see some of the unspoken factors that may have lead her to that conclusion.  As one example, Aspies are frequently lax in their personal habits, because they don’t value the benefits the way an Neurotypical (NT) brain does.  An Aspie doesn’t see well through the eyes of an NT (and vice versa!) and therefore may not fully appreciate that it is not pleasant for that NT to see or smell an unkempt person, much less work or socialize with one.

Yes, Greg is perfectly capable of bathing himself and putting on clean clothes, but if I weren’t there to guide him, would he see the need to do these things on his own?  Perhaps not – perhaps he would go unwashed and wear the same clothes for days.  Yes, at some point in the future Greg could probably shop for groceries and cook a meal, but would he value the need to eat a balance diet and make the effort that that requires?  Perhaps not – perhaps he would eat his favorite take-out pizza 7 nights a week.  Yes, Greg could make his bed, vacuum his room and do the dishes, but on his own, would he choose to do so???  And the list goes on…finances, home maintenance, health, fitness, socializing…  In society, we do necessary ‘chores’ on a daily basis – even if we don’t feel like it.  We do these tasks, because we NTs are aware of the societal benefits of them and the consequences of not doing them.  An Aspie may not value the benefits the same way, and may not even be aware of the consequences that society will impose for not doing so…not a recipe for success.

It dawned on me that, even if Greg could eventually obtain stable, gainful employment and earn enough for his own place, it may not be sufficient for his needs.  For although Gregory would most likely be capable of doing all the tasks required of living independently, without guidance he may not choose to do those tasks.  And that is where an on-going NT influence (whether it be me, a roommate, a wife, or the Resident Assistant at a group home) would be beneficial.  And a group home, filled with fellow Aspies, might be a very positive, nurturing experience.  It could be a very comfortable, supportive environment within which Gregory could thrive – understood and appreciated by those around him.

So eventually I came around to appreciating Eve’s recommendation for what it was….good advice.  We don’t know what the future holds for Greg.  And while I sincerely hope that he will eventually lead a fulfilling, happy life on his own, I can see that some on-going beneficent NT oversight will most likely be necessary.  His father and I will not be around forever, so it is prudent for us to plan for his future.  As much as my heart resists it, we should sign Greg up with the DDD, so that at least he has that fall-back option should he need or want it.   Sigh….

To be honest, having come to that decision months ago, I still haven’t taken any action.  That future seems so remote and Greg’s progress has been very impressive over the last two years…  Besides, AS is becoming almost cool these days, with documentaries and box office movies being made about it and Aspie characters starring on almost every hit tv series.  As the general public becomes more aware of AS and the unique strengths that many of these individuals possess, future employers may very well be seeking out Aspies with lucrative, adapted job opportunities, instead of shying away from them in fear, misunderstanding and/or censure.

In a wonderful book by Temple Grandin and Kate Duffy – Developing Talents:  Careers for Individuals with Asperger Syndrome and High-Functioning Autism, the authors suggest ways to identify and tap into the potential talents of those on the spectrum.  This sage, practical book discusses all aspects of the search for suitable vocations – providing invaluable career advice to and from real people with AS.  So taking all this to heart, I am not abandoning my hopes and dreams for Gregory’s future.  Sure, he might take a little bit longer to ‘launch’ and he may benefit from on-going supports, but that’s OK.  Working together, we will do our best to prepare him for an independent, successful life – one on his terms, of his choosing.  That is my dream.

*  *  *  *  *  *

In spite of society’s growing awareness and acceptance, it remains an urgent priority to address the needs of the expanding autistic population within our social services across the country.  Stop-gap measures must be put in place immediately to address the huge gap in current unfulfilled needs within these organizations.  But equally critically, a strategic plan must be developed to address the anticipated needs of the future.  Society cannot just put its collective ‘head in the sand’ and hope these problems will go away.  We owe it to ourselves;  We owe it to our children…

Let’s make it happen!    – Joanne

How Rude!

5 Oct

Have you ever been mortified by something rude or tactless that your child has said or done in public?  Or worse yet, been the one to insert ‘foot in mouth’?   I can answer a resounding YES! to both questions.  I’m sure we have all experienced something similar (and wish we could forget!)  One time, I was in a bar and there was this cage…..well anyway, I’d better keep that one to myself, I think!  😉

It happens to the best of us and for the most part, our fellow citizens (especially if they know us) forgive the occasional faux pas.  We apologize, laugh it off and try to smooth over the awkwardness.  If social mishaps occur frequently however, the response changes.  People start to get annoyed, avoid, and maybe even chastise the ‘offender’.  After giving offense too often or perhaps with insufficient remorse, we soon get labeled as odd, self-centered or rude.  Socializing and working within a team become increasingly difficult and we are left out in the cold.

It’s not nice, but that’s how society works.  Disapproval and shunning are the tools society uses to enforce the rules of social engagement.  These rules, which form the unwritten guidelines for social behavior, are critical to keeping society running smoothly.

The Hidden Curriculum – Part II – Manners

As discussed in my previous blog The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding these hidden rules.  This inability to correctly interpret social nuance means Aspies make social faux pas…repeatedly…often without remorse…perhaps without even understanding that a rule was broken.  The result?  Being made an ‘outsider’ in society.

Previously, I outlined a few methods that may be used effectively to help explicitly teach some of these social rules.  This week, the focus is on manners, those pesky little rules from our mothers – Those customs and traditions of society that govern how people treat one another and behave in social situations.  In today’s world where these common courtesies are becoming increasingly uncommon, learning about etiquette and manners is important for every child – not just Aspies.

Below are some of the methods to teach kids the ‘mannerly way of life’.  (But parents are welcome too!)

1.  Model Good Behavior

The first rule of teaching any behavior or skill is to model it yourself.  As Gandhi once said, “Be the change you want to see in the world.”  Demonstrate the correct behavior and with a bit of luck, your child follows suit.  Hopefully, we parents exhibit good manners naturally – modeling the desired behaviors unconsciously on a daily basis.  If however, you are a bit of a slacker at home (hmmm…my husband Barry comes to mind… 🙂 ) then you may need to step up your etiquette game.  Show respect and treat your family members like favored guests.  Be sure to use ‘please’ and ‘thank you’ regularly – to your spouse and your kids.

I’ve been compared at times, to a drill sergeant, issuing orders in the morning like a rapid-fire machine gun, trying to get everything organized and everyone out the door on time.  It might be efficient, but it is stressful, unpleasant for everyone and definitely not ‘mannerly’.  Although I tend to forget, my kids and hubby are not minions at my beck and call – and shouldn’t be treated as such.  It is much better to organize things the night before, and enjoy a calm, pleasant morning by making polite requests and kind acknowledgements.

But modeling good behavior doesn’t stop at home.  Keep in mind that your kids are always watching you and your example – in the car when you swear at that bad driver, in the grocery store when you are rude to the cashier, and at the playground when you talk behind someone’s back.  It is not easy to always stand tall and take the high courteous ground, but remember those eyes are always on you.  Do your best…

2.  State Expectations Ahead of Time

One very effective tactic to teaching good manners is to explicitly state the expectations of behavior immediately before the occasion.  For example, we have ‘Restaurant Rules’, which get reiterated right before we enter a restaurant.  We outline examples of good restaurant behavior (not bothering other diners, saying please and thank you to the waiter, etc.) and bad (complaining loudly about the food, listening to other conversations, etc.).  Our little lambs still need some reminding during the course of a meal, but at least the expectations are well understood.  And although our kids are far from perfect restaurant guests, they have been complimented on numerous occasions by restaurant staff and other diners for their good manners.

3.  Have a Code Word or Action

Even if kids know proper behavior, they sometimes forget.  (Children do have a tendency to behave childishly…)  It is helpful to have a secret code word/phrase (such as ‘quiet hands’) or action (such as a touch to your noise), that coupled with a meaningful look on your part, will discretely indicate a breach of etiquette to your child.  Hopefully that subtle reminder will be enough to correct the situation.  If need be though, the more direct approach has been used by moms for centuries:  The old faithful “Johnny, what do you saaaaayyyy????” is usually effective to prompt a courteous ‘Thank You” from your little cherub.

4.  Read Manners or Etiquette Books

A book won’t take the place of direct instruction, but is a great tool to reinforce your teachings.  One of my favorite books about manners for kids is How Rude! – The Teenager’s Guide to Good Manners, Proper Behavior and Not Grossing People Out by Alex J. Packer, PhD.  This book is not geared specifically toward kids on the spectrum, but its cartoons, teen-relevance and irreverent presentation make it a great and fun resource.  It is so humorous and entertaining (not at all preachy, boring or dull) that Gregory (and his siblings!) actually WANTS to read it, laughing along as he learns the basics of polite behavior in all kinds of situations.

Manners are a critical component of the Hidden Curriculum. Rules of good behavior must be explicitly taught to those with social-cognitive learning disabilities, but every child should receive these valuable etiquette lessons.  Because in society…We all benefit from polite social interactions:

  • Good manners put people at ease and make them feel good – about themselves and each other.
  • Good manners impress people and are attractive to friends, teachers, employers, etc.
  • Good manners allow people to live and work together more harmoniously and productively.
  • Good manners build self-esteem through respect and kindness.
  • Good manners are free!

This concludes our manner lesson for the day.  I have to go now…My kids are beating each other up – and they aren’t doing it very politely! 😉

%d bloggers like this: