Twitter Storm on Autism Sunday

Do you tweet?  Perhaps I should frame that question in a more developed context.  In this world of social media, we all make choices about what we are/not interested in knowing and/or sharing about our own lives and the world's happenings.  There's Facebook for the more personal socializing, and LinkedIn for the professional networking.  Then there's Twitter, which tends to be a chaotic mash-up of news links and stream-of-consciousness opining.  Whether you tweet (post messages under your own user name) or lurk (follow other users of twitter-verse), if you have tweeps (Twitter users you follow and followers) who care about autism, then you've likely heard that yesterday, February 12, was Autism Sunday.

So what does that mean?  It means that a dad in the UK started the concept of an international day of prayer for autism a decade ago.  And in the worldwide social media revolution, having a topic "trend" on Twitter has become a coveted phenomenon.  So theoretically, encouraging Twitter users globally to post about autism using the #autismsunday hashtag would put autism awareness on the Trending map.  A fine idea for the 100 million or so users in twitter-verse.

As I write this post in the middle of the night on Saturday, I have no predictions about the likelihood of Autism Sunday's Twitter-storm success.  I do, however, have some predictions about what our family will do on Autism Sunday.

We'll wake up to get ready for church: me first as Mom, and I'll wake my 10-year-old daughter with Asperger's Syndrome, because with the difficulty she has with focus and executive functioning, it takes her longer than the average tween to get ready for anything.  I'll give my husband the first "alarm" before I hit the shower, and the second wake-up call thereafter.  My 13-year-old son with PDD-NOS is the lowest priority when it comes to the rousing roster.  He's so hyper-efficient in his morning routine that if he's left to wait, he becomes anxious.

So an hour or so after our household Sunday dance begins, we'll head to our place of worship to pray.  I'll probably throw an extra prayer about autism in either in our house of worship and/or somewhere else along the 24 hours that make up Autism Sunday.  It might be while I observe how difficult a time our son has balancing the "rules" in his mind with the happenings of a church service.  It might be while my daughter gazes at my face during a song she remembers I like deep in my soul, because she wants to see if I'm crying.  It might be as I'm balancing the day's menu with the particular food quirks of my teenager in mind.

I don't need a Twitter-storm to make me aware of autism.  But I do appreciate the prayers, and hope that February 12 inspired at least one more person to think about the 1% of people who experience the world through autism, and all their caretakers.

Bowling with Autism

There are so many things I love about Good Friend, Inc., but our annual Hawaiian-themed bowling event is my favorite. It's so much more than a fundraiser: It's a time for families and friends to enjoy one another while supporting a good cause. A time for colleagues to see each others' silly sides. An opportunity to perhaps win a prize for your creativity with a coconut (for real - that's a prize category this year!). And that's just on event day.

When I take a moment to pause during the event, I see people bowling side-by-side with families they've never met, but whom they may have seen. And before that day, when the typically-developing community member saw that 9-year-old boy with autism having a meltdown in a department store, she might have thought to herself how ill-behaved he was. Or perhaps she cast a glance at the bewildered mother and wondered why she wasn't managing the situation more strong-handedly.

But at the Hoa Aloha Autism Awareness Bowling Event, they might understand a little bit better that bowling with autism can be hard.  There's all this noise that perturbs the auditory sensitivity, and a throng of unfamiliar people adds unpredictability.  There are turns to take and minutes to wait -- such difficult, sometimes abstract concepts for concrete thinkers with autism.  And that darn bake sale is ever-beckoning little ones back for more, regardless of their brain wiring.

So, sure, I can fill you with a bunch of statistics in preparation of National Autism Awareness Month (April):

• 1:110 children in the U.S. has an autism spectrum disorder. (But remember - this is a lifelong brain-based difference; not a condition of childhood.)
• Autism is at least three times as prevalent in boys than girls.
• More children will be diagnosed with autism this year than childhood cancer, juvenile diabetes, and pediatric AIDS combined.
• Children with autism are more likely that their typically-developing peers to be bullied in school.

But I don't know that offering head knowledge is the best way for you to understand how important it is for our organization to provide social support to communities including people with autism.  I hope you'll join us at New Berlin Bowl on April 22.  We've increased our goal for this year's event by 25%, so we need more teams, more companies, more donors than ever before to extend themselves in the pursuit of autism awareness, acceptance, and empathy.  For more information or to register your team, click here.

What's in a name?

Indeed, a rose by any other name would smell as sweet, as William Shakespeare's love-struck Juliet surmised. But have you ever tried to cultivate roses?  They're a fussy flower (at least in Wisconsin's corner of the gardening universe).  So if Juliet had cared for her rose bushes in the same manner as her hardy mums, she might be rather disappointed come spring.  In fact, her sweet roses would be thorny, dead sticks standing barren in defiance of warmer days.

The point is that if we do not name a rose accordingly, we will not know how to care for it properly.  We'll neglect its special needs for lack of understanding.  It is the same with children with differently-wired brains.  We can pretend all we want that diagnoses don't matter.  We can insist that all children are special and show them that flowers have varying blooms.  But without specific instruction and correct terminology, they'll unintentionally mistreat the plant.

Ignoring autism in the classroom is as misguided as ignoring roses in the garden.  Look not at names and diagnoses as restrictive labels, but as descriptors that bring to mind a specialized set of skills for instruction and interaction.  People with epilepsy have a differently-wired brain, but I wouldn't use the same skill set in modifying curriculum for someone impacted by seizures as I would for someone impacted by autism.  And students with ADHD have different reasons for their difficulty in attending to instruction than students with autism do.  Neuro-typical peers socializing with a friend with epilepsy may not have to change their means of communication, but they likely will when connecting with a classmate with autism.

See what I mean? Using proper terminology with children of any age is a way to share a common language and attach common definitions.  Certainly, in the case of autism spectrum disorder in particular, those definitions may change over time.  (Just wait for the DSM-5 to be released!)  But if we're all on the same page equipped with the same lexicon, then we can treat one another with the respect and understanding we each deserve.

And if you need any help establishing that lexicon, Good Friend, Inc., is here to serve!

Inclusion: It Isn't Just for Families Anymore

I adore Paula Kluth.  Before this starts to sound like a weird stalker post, let me give you some Kluth-isms to provide an evidence basis for my declaration so you can join the club:

-  "Inclusion isn't a place. It's the work that we do."
-  "Dwell in possibility." (borrowed from Emily Dickinson, but applied to successful educational inclusion, therefore a Kluth-ism)
-  "Don't stop trying 15 minutes before the magic [of meaningful inclusion] happens."
Plus, she's from Wisconsin.  I'm just sayin'.

The point is that Paula's positivity is inspiring.  She's full of best practices and classroom-tested differentiations that make learning fun and accessible for students of all abilities.  She practices and promotes inclusion.

Inclusion is vital in our communities.  Not just in our homes as families who care for someone with autism or another diff-ability, but also in education (whenever possible -- and Paula and her colleague Patrick Schwarz would likely argue it's always possible!), in the workforce, and in recreation and leisure opportunities.

Even before a child gets an autism spectrum diagnosis, families are often making accommodations (consciously or without even realizing it) to include their child in household happenings and outings.  We may bring a particular food item or some fidget toys when visiting relatives; or arrange our schedule around a favorite TV show; or closely monitor the weather to decide what activities would be best suited to our loved one with autism's quirks.

Many administrators and educators (not necessarily in Wisconsin, where the Department of Public Instruction supports the inclusive educational model) have not been trained properly in the inclusion of students with special education needs in classrooms.  They may adopt a practice that looks more like mainstreaming, where the student with an IEP is in the regular education classroom, but is lacking the curricular or instruction modifications that would make for a truly inclusive experience.  Perhaps the peers in the class didn't receive any training either, which makes social exchanges awkward at best and non-existent (or damaging) at worst.

If we want to prepare today's students for the increasingly integrated future of work and play, then we as parents and professionals need to model acceptance, inclusion, and flexibility.  It doesn't have to be expensive or complicated, but it does have to be prioritized and open-minded.

The Silence of Our Friends

As we were doing the research for our middle school film, Choosing To Be a GFF, we noticed a heart-breaking trend.  Typically-developing students who were friends with a child with special needs in elementary school treated their differently-abled peer as if he or she were invisible in the great chaos of blending friends in middle school.  From the point-of-view of the "regular education" adolescent, this new school was not a time to stand up and stand out, but a time to take a big step back and decide who was going to be included in the new friendship mix.  Reaching over to draw in a child from the "special education" co-hort took a measure of character that had not yet developed.

Yet from the point-of-view of the student with a disability, he or she was rejected at a time when social support was most needed.  This new school was bigger and less predictable, and the only thing he or she figured was reliable was the smile of a long-time buddy.  How awful when that buddy chose to cast her eyes down when her friend with Asperger's passed in the hallway; or when that pal kept his hand in his pocket when his friend with Down Syndrome lifted his for a high-five.

On this Martin Luther King Jr. Day, a favorite quote of his rings in my ears: "In the End, we will remember not the words of our enemies, but the silence of our friends." Sometimes that silence is the reason for a friend's feeling of rejection. Perhaps that friend saw disability harassment taking place right in front of him, and he chose to remain silent. Maybe that friend could have offered a word of encouragement when her friend ran by in tears, but decided that was too risky. And maybe that silence caused a child with special needs to despair of his or her own life.

Were Dr. King alive today, I'm sure he would see that America's battle with discrimination on the basis of disability is the frontline of inequality in education and the workforce.  And he would have a dream ...

The Virtue of Life-long Learning

As we close out 2011, it's important to circle back and recall the valuable lessons of the year so we take them with us into 2012 and apply them effectively. When I participate in conferences and other continuing education opportunities, I return with volumes of new material to consider. I have to revisit those folders to reclaim their treasures! And that's one of the blessings of studying autism: There's always new research (some promising, some lacking credibility) and theories. And as the years go on, sometimes those of us who care for people with autism spectrum disorder (ASD) have to up-end completely our approach to certain aspects of interacting with these often misunderstood individuals.

Think about it -- Thirty years ago, "refrigerator mothers" caused their children's autism, then believed to be a psychological manifestation of a failed mother-child bond. Twenty years ago, a British researcher translated the writings of Hans Asperger and coined the diagnosis Asperger's Syndrome. Ten years ago, occupational therapists starting exploring the sensory integration aspects of treating ASD. And now, we realize that lacking the ability to talk doesn't mean a person has nothing to say.

So when earlier this year I had an administrator tell me that the school staff had been "in-serviced to death" on the topic of autism, I wondered aloud what their last training was. I learned one hour five years ago was the exposure. I recognize that autism accounts statistically for 1% of a school's population, but the good news is that best practices in teaching a child with autism often apply typical students as well! Establishing expectations, maintaining a visual schedule, and employing regular movement breaks are examples of these.

So next time you think your school couldn't use another hour of training (for staff and/or students), consider the virtue of life-long learning and give us a call.

The Gift of Friendship

I had the kind of conversation last week with a mom that throws me into fits of hate and hope. She told me a sad but familiar story of a misunderstood boy who spends his recess pacing the playground perimeter because he and his peers just haven't figured out how to have successful social interactions. And without intervention, they won't.

No one "just knows" how to interact appropriately with someone with autism. Certainly, there are those with a sensitivity and compassion that encourage them to continue trying in spite of pratfalls, but unless you have an understanding of that differently-wired brain and how it impacts the way that person experiences the world around them, you will struggle.

And children with autism can't be expected to be socially graceful.  A hallmark of their disability is lack of social understanding, so how can we as parents and teachers expect them to generalize to the playground skills taught in a speech therapist's office without coaching?

And this mom told me about how this boy was trying to initiate social interaction by hugging, which he was told specifically was unacceptable.  The poor child.  So while I hate that this downtrodden boy is despairing of his young life because he can't find a way to fit in, I have hope.  My hope springs from the results we've seen from our staff and student services.  I know that we can go into that school and work with its community to create a culture of acceptance, where glimmers of understanding and empathy shine more brightly than the darkness of despair.

But we can't do that without your help.  Please consider giving a year-end gift to Good Friend, Inc.  Your donation of $10 pays for us to send a Presentation Kit loaded with helpful resources for educators and families to the school that invites us.  A $25 donation pays for gel bracelets and personalized certificates for a classroom of students who learn to be good friends.  Only $50 covers the expenses associated with a guest lecture, where upwards of 100 college students at a time learn about best practices associated with interacting with people with autism.  And a $100 donation allows us to go to a school and provide an hour-long staff in-service. 

You can donate online through our website (right-click on the Donate button to open a new PayPal checkout window) or Cause.  Checks can be made payable to Good Friend, Inc. and mailed to 808 Cavalier Dr., Waukesha WI 53186.  Donations are tax-deductible to the extent provided by law, and should be postmarked by December 31st for this year's application.

Thank you for your generous support of our mission!