Monday, December 30, 2013

"We ALL Fit" single release!

In 10 days, on Thursday, January 9, 2014, at 10 a.m., some 500 teachers, students, administrators, community stakeholders, and cast members will gather at Cushing Elementary in Delafield, Wis., to see the "We ALL Fit" music video by The Figureheads for the first time.  Following the world premiere event, the video will be available on YouTube and the single (featuring Noelle Budde, Evelyn Barta, and Regan Carter) will be available through online music outlets.  Like our Facebook page to get the links after the premiere.

Since space is limited for the premiere and reception to follow, attendance is by invitation and registration only.  If you did not receive an invitation but wish to come, we would be happy to put you on stand-by, notifying you on Tuesday, January 7, if we still have space available.  Please send an email with your first and last name, title, and organization (if applicable) to chelsea@goodfriendinc.com, subject: I want to come to the "We ALL Fit" premiere.

Whether or not you're able to see the video with us live, you'll want to sing along.  Here are the lyrics, which by themselves are powerful poetry; and with the music, they're unforgettable.

Chorus 
When you look down on the world from a plane in the sky,
you can see that we're all part of a picture. You and I
are the pieces of a puzzle. Yeah, we're all connected;
leaning on each other - so much beauty unexpected.
We're all looking for a good friend - someone that we
can be ourselves with, who will encourage us to be
like one family. That's it!
The secret to the puzzle is knowing we all fit. 
Verse 1 
My favorite puzzles are pictures of people, plants, and the places
I've never been to. They're like portals into worlds and I'm waiting
for magic trees to invite me into the picture and take me
into a story about how I saved the world from a fire-
breathing dragon over lava. That'd be awesome, I know!
What if the planet was a puzzle? Where would all of us go?
I mean, what if you were a piece trying to fit in a spot,
and every time that you try, somebody tells you there's not
enough room for you - like you don't belong in the puzzle. What?!
That'd be tough, and that's why every one of us stands up
for the person and people looking to fit in this puzzle.
We ALL Fit. That's it! It shouldn't be such a struggle. 
Chorus 
Verse 2 
Autism isn't something that you catch.
It's not an itch than you can scratch.
It's like a hidden treasure, and here's a map
to help us all understand where we're at.
As we learn how to respond and react
to our friends with autism and the ways they may act.
As we learn to recognize the gifts they've been given
so that We can move together in one rhythm with ‘em -
back and forth, up and down.
We can rock our bodies and dance around.
We can try to see through each other's eyes.
It can be hard to do, but if we try -
Well, then we're one step closer to the treasure
of being a community and moving on together.
So find out all the ways that you can help.
And in the process you may even find yourself.
Good friends, let’s go! 
Chorus

Bridge 
Sometimes I feel lost and alone.
Wish I had a place that felt like home.
And if I had a friend -
someone who understood -
then that would make a difference,
a difference for the good.
Good friends, let's go! 
Chorus
© 2013 Good Friend, Inc. All rights reserved. 

Please share this song with your school, students, and community!  Help us create a culture of acceptance where children of all abilities are valued and included!

Monday, December 16, 2013

"My Favorite Things", autism-style

My son with autism is nearly 15 years old.  When things start buzzing around Christmastime, he has a guarded enthusiasm.  He loves to bring out the movies of the season, but isn't so excited about how much changes around the house.  So it was especially beautiful when he stopped on Saturday morning and noticed ornaments on our tree.  He found the ones that had meaning to him, and pushed buttons on those with sound effects.  It was good to see him enjoy things on his terms.

And though I'm not sure why, it made me think of the Rodgers and Hammerstein song "My Favorite Things" from The Sound of Music.  And I put together this alternate, interpretive version -- a compilation of all things my boy (and a little of my girl thrown in, too).  Some of it just might resonate with your experiences.  So get your tune ready and sing along!  (Yes, I cheated out of a stanza in each series.  You get the idea.)

Julie Andrews sings "My Favorite Things" in Rodgers & Hammerstein's
The Sound of Music (Robert Wise Productions, 1965)
Shirts without long sleeves or rough tags or stitching
(Put that junk on me and watch me start itching)
Pants I slide into without buttoning -
These are a few of my favorite things.

Schedules and checklists so I know what’s coming
People who don’t mind my flapping and humming
Toys with lights flashing but not ones that sing -
These are a few of my favorite things.

When the dog barks, when my sis cries, and my ears hurt bad,
I block it all out with my hands or my voice, and then I don’t feel so sad.

Swimming and jumping and water slide riding
Getting away from the noise while I’m hiding
Puppies and kittens that snuggle and kiss -
These are a few things that bring me such bliss.

My mom, dad and teachers and friends, but not strangers
Light sabers, Nerf guns, and all Power Rangers
Time by myself without too much talking -
These are a few of my favorite things

When the plans change, when I can’t cope, and I’m feeling mad,

I rewind a movie to my favorite part, and then I don’t feel so bad.

Make sure you build in plenty of time for your student with autism's favorite things this holiday season!  Share some of your child's favorite things in the comments.

Monday, December 9, 2013

9 Ways To Interact With People With Autism, Translated

A little over a year ago, I was a guest blogger for Crisis Prevention Institute.  Click here to check it out, and share with those who will be around your loved one with autism this month.  Here's to happy holidays!

Monday, December 2, 2013

#GivingTuesday 2013

I hope your weekend has been as delightful as mine has been!  I've heard stories (mostly good ones) about Thanksgiving Thursday, Black Friday, Small Business Saturday, and now Cyber Monday.  We want to hear YOUR story about Giving Tuesday!

Good Friend has taken its involvement in the #GivingTuesday movement up a notch for 2013.  We're now a partner in the 92Y Initiative to change the focus of this holiday shopping season from one of accumulating stuff to being charitable.  What do you give?  Time?  Talent?  Cash?  And why do you give it?  Why should others care about your cause?

Already this school year, Denise and I have presented our organization's message of autism awareness, acceptance, and empathy directly to more than 2,000 students.  We know we can reach another 3,000 before the summer break with the support of engaged, caring community members.  How can you help us today and/or tomorrow?

  • By spreading the word about what we do, why it's important, and how schools can use our products and services to create cultures of acceptance.  
  • By donating online at www.goodfriendinc.com.  Click on the Donate button.  (You don't need a PayPal account!)
  • By sharing your #UNselfie using this image.

 Just print it, write the reason you support us in the blank, take your photo, and post it with the hashtags (including #GoodFriendInc) on your favorite social media outlets (Twitter, Facebook, Instagram, etc.).

Here are the top five reasons why Denise and I give:

  • kids with autism should be understood, not bullied.
  • doing inclusion right means educating peers.
  • every student in school, regardless of ability, deserves at least one good friend.
  • playdates are rare and precious for our kids with ASD.
  • birthday party invitations RULE.


The goal for our annual giving campaign will be met if we raise another $2,100.  We would greatly appreciate your support in helping us meet that goal!  Here's to #GivingTuesday!

Monday, November 25, 2013

"I want to see!"

Being the eldest of six children had its advantages when growing up.  Until ALL of my younger siblings eventually surpassed me in height, I could often see things before they could: the first snow falling outside our window, the next float coming down the parade route, the favorite animal exhibit at the zoo.  Invariably, one of my brothers or sisters would shout out, exasperated, "I want to see!"  Then we'd step back, or bring one of the little ones up higher so he or she could get a better look.

That was an accommodation we'd make, but sometimes we wouldn't think about it until after the child spoke up.

Temple's book was also made
into an HBO original movie.
So many people with autism have told us they're visual thinkers.  Instead of thinking in language as most of us neuro-typicals do, they think in pictures.  This isn't to say that all people with autism prefer pictures to language, but it is reasonable to assume, in case you either aren't able to ask or your person with autism isn't able to reply in a way you understand (yet), that visual supports are helpful for people with autism regardless of their age or verbal abilities.

You don't have to be a speech therapist, special education teacher, or autism support professional to create and use visual supports.  Granted, to implement this evidence-based practice to fidelity, you have to do your homework.  But let's say you're a parent getting ready for the weekend ... or a grandma trying to figure out how to communicate with her grandson ... or a student wanting to invite a friend to a party.  You can use visuals to make life better for each of you!

Think of the ways you use visual supports already.  Do you have a calendar on your wall somewhere?  If you're writing down appointments and events, you're using a visual support.  Do you have a list of things to do or buy?  Also a visual support.  How about an evite?  Another visual support!  They're good for organization, for independent functioning, and for multi-sensory approaches to learning.  And that goes for everyone.

So instead of waiting for your person with autism to ask for a visual support, start creating them!  And once you're using them successfully, think of other areas where this could be helpful -- a laminated check-off sheet for morning routines, a Time Timer for timed activities, breaking down multi-step projects, etc.).  Don't think that the practice is limited to PECS, but think alerts on iPads and notes in pockets and signs on doors.

Do you have a favorite way you've used visual supports successfully?  Please share with us and get the ideas going!  (And if you haven't been clicking on the links embedded in this posting, you might want to go back and start there.)  Meanwhile, I have to run.  I have to make a visual support that's going to show my son how well he's doing with his despised (but necessary and helpful!) exposure therapy.

Monday, November 18, 2013

THIS is autism!

As a parent of two children with autism spectrum disorder, and as a professional who's spent the last six years working toward autism acceptance in schools, I found Suzanne Wright's blog posting, "Autism Speaks Point of View" for last week, incredibly offensive.  Apparently, so did hundreds of others, whose comments at first were allowed on the website just below the posting.  Those have since been removed and comments are no longer recorded (there).

Not surprisingly, it's creating a backlash.  Throughout the week, individuals with autism, parents, and others who value the dignity of those with autism rejected Wright's depiction of families who have a loved one with autism as "not living" but "existing" in "despair" and "fear of the future".  As I read to my daughter Wright's horrible characterization of raising children with autism, which was to be a rally cry for Autism Speaks' policymaking summit in Washington, D.C., she crinkled her face in confusion.  I raised my voice in indignation.  This is NOT autism.  Not for us.  Not for our family.  Not for Good Friend.

our family in 2012
Perhaps the Wrights, co-founders of Autism Speaks, have been tainted by negativism.  In their desire to "not sugarcoat the impact of autism" (one of the eight guiding principles of the recent #AS2DC summit), maybe they've lost sight themselves of the gifts, the talents, the dignity of children and adults (who should not be lumped in with minors) with autism.

By virtue of our Awareness-Acceptance-Empathy mission, Denise and I have had the honor of meeting 100 children with ASD and their families (if only over the phone) since 2007.  According to a few of them, THIS is autism:

  • Ben loves NASCAR.  He demonstrates his appreciation of his peers' interaction by drawing them pictures.
  • David has an amazing memory.  His classmates also know that he's likely to beat them in a game of HORSE at the basketball hoop.
  • Paige is such a quick learner that she figured out how to write her own Social Stories.
  • Reid is quite the movie buff.  Ask him about producers, directors, and run times, especially about the Avengers movies, and he'll wow you!
  • Avery's family watches "Wheel of Fortune" together.
  • Nathan is learning to use words to communicate verbally.  And even though he's in kindergarten, he's already reading at a 2nd grade level.

Yes, some of these parents and grandparents needed resources.  We were glad to give them ideas.  Yes, some of them were tired.  We were glad to encourage them.  Yes, some were frustrated.  It was our pleasure to offer them hope.  That is what it means to belong to a community; not to make others lament our existence, but to pull the little red wagon, as in Margaret Katter's poem, when someone needs a break.

Little Red Wagon, by Margaret Katter 
Some days we skip along,
pulling our red wagons with great confidence –
so full of energy that the load seems light. 
Some days the load seems heavy
and we need someone to help us
pull our wagons over the bumps in the road. 
Some days we are just tired.
We sit in our wagons and let someone else
pull us along for a while. 
As you think about yesterday, and make plans for tomorrow,
keep in mind that there will be times when you can help
pull someone’s little red wagon for a while. 
After all, helping to pull each other’s little red wagon
is what makes it possible
to face the challenges the day brings.

I applaud the effort of bringing national attention to the needs for supports and services that many individuals with autism and families and caregivers require, but cannot access.  But I refuse to surrender the pride I have in who my children are today, who they were yesterday, and who they will be tomorrow for that national attention.  And I certainly will not tarnish the glow of the dozens of shining faces of autism we've connected positively with thousands of their peers.

I believe that change in national policy will happen when autism awareness, acceptance, and empathy pervade legislatures.  When each of us as advocates show those who don't understand how worthy of support people with autism are, we promote compassionate, effective responses.  Please continue to live out Good Friend's mission wherever you are.

Monday, November 4, 2013

Extending Dignity

So much as happened near and far in the past few days that remind me how much work we have to do  as an organization and as parents, and how much has already been done by so many autism advocates.  In the category of earth-shaking accomplishments, take Larry Bissonnette and Tracy Thresher of Wretches & Jabberers fame into account.  Today, these are internationally-known, world-traveling gentlemen who type to speak; but they were not presented with such an opportunity and training until they were well into adulthood.  They were presumed incompetent, unintelligent, and consequently institutionalized before they were able to relay their thoughts.  Through Gerardine Wurzburg's beautiful and powerful documentary, and the international speaking opportunities it continues to generate, Larry and Tracy are encouraging societies to extend dignity, presume competence, and realize that intelligence does not always look and sound the way we expect it to.
Find out more at http://dignityandrespect.org.

Shouldn't we be extending dignity to every human being around us, regardless of perceived intelligence?  Sometimes it seems as if only those who express their cognitive ability with reliable spoken language deserve such treatment.

I was encouraged by the hearts of the leadership and a select few parishioners at an urban church here in our area over the weekend.  Though this is a relatively small church, it has quite a few attendees with autism spectrum disorder.  One of the young men was ignored by a neurotypical peer recently when he attempted to make conversation, and that spurred the leadership to learn more about ASD so they could practice awareness, acceptance, and empathy within their own community.

I was discouraged by the words of a mother of adult twins with ASD, who described them to ABC News in this way: "In the spectrum, they're at the very bottom."  Now, I am more than willing to extend benefit of the doubt when it comes to out-of-context news editing.  But it made me sad to think that because New York City Marathon runners Jamie and Alex Schneider couldn't find a way to communicate verbally, they were "at the very bottom" in any way.  It seemed undignified to me, and I doubted they would describe themselves in a similar fashion, if empowered with the tools and training Larry and Tracy have been.

What's the point?, you ask.  Extend dignity.  Each of us is doing the best we can with the tools we have.  We all do better when we know better.  Assume those around you will do the same.  And do your best to bring them the tools that will inspire still more community members to extend them the dignity they deserve.

Monday, October 28, 2013

Pretending to be "normal"

Whether your neighborhood hosted trick-or-treaters already, or is gearing up for the swarm of costumed kiddos later this week, this is a time when many of us celebrate our children pretending to be other than who (or what) they are.  Sometimes the costumes are so elaborate or concealing, we cannot recognize our pals.  And some characters even assume their costumed persona while at the party or collecting candy.  There is, of course, no expectation that such charades will continue past Halloween.

Unfortunately, some individuals with autism feel as if we neurotypicals are asking them to engage in a perpetual charade.  Author and advocate Sarah Stup writes, "With too much asking us to be normal, we feel like impostors."  While I loved Miss Montana (2012) Alexis Wineman's platform for the 2013 pageant, "Normal is just a dryer setting," I recognize that as a parent I once had a goal for my children with ASD to be "normal".  I wanted them to be unrecognizable from their peers in the classroom.  What a foolish and narrow-minded aspiration.  One I'm glad the parents of Thomas Edison, Albert Einstein, and other great minds, whose genius was inextricably tied to their suspected autism, didn't hold too tightly.

I am not suggesting that we don't push our children to be the best they can be.  Rather, I am insisting we respect who they are.

Consider how we all have to differentiate our choices based on environments and audiences.  When you're in the library, you respond to your environment differently than when you're at a parade.  When you're dressing for the symphony, it's likely in more formal attire than for your son's soccer game.  When you're interacting with your 8-year-old child's friends at her party, you adjust from the way you were interacting with your colleagues at work hours earlier.  Some of these adaptations are uncomfortable for us, and we breathe a sigh of relief when we can be "ourselves" again with the ones we love on our own "turf".

Yet those are all environments and circumstances that we choose.  Granted, we have more autonomy as adults, which is developmentally appropriate.  Naturally, children have less authority.  But they should not have less entitlement to being who they are.

If you want your child to be in a Scout troop to enhance his or her social ability, be sure your child has adequate support and preparation to participate in manner consistent with existing function.  If you want your child to be part of the extended family portrait, allow him to wear clothes that he prefers.  If you believe your child with autism should attend her cousin's wedding, don't expect her to be able to sit for an amount of time beyond what she's demonstrated to be comfortable for her.

These outings are all lovely ideas, and may have real benefit.  But think inclusively: What can you share with event coordinators that might make the event better received by everyone?  What adaptations can you make to respect your loved one with autism's limitations while leveraging her strengths?  Because asking your loved one with autism to pretend to be "normal" (whatever that means) is just not dignified.

So enjoy the extra-ordinary masquerade that is October.  But if you're still asking your student to don a figurative mask beyond the 31st, examine your motivations and appreciate the real person behind the facade.  And encourage others around him to do so as well.  Together, you can help him be the best him he can be!

Monday, October 21, 2013

"A Difference for the Good"

I could spend the next month's worth of blogs breaking down the lyrics of The Figureheads' original song, "We ALL Fit", written and produced for Good Friend's upcoming elementary school peer sensitivity film of the same title.  And each week I could focus on a phrase that has come to mean so much more to me over the process of observing the interactions on the film and music video sets.  But with the video scheduled to be available on YouTube within the next month, I don't want to infuse my own experiences into the song for you.  I want you to tell us your stories!

Jeremy Bryan, Dave Olson, and Greg Marshall
of The Figureheads on the set of our music video
Still, I can't resist these lines from the bridge:
And if I had a friend
Someone who understood
Then that would make a difference,
a difference for the good.

What difference has having a friend (or a group of friends) had in your life?  Go back to your elementary school days.  What about then?  What did it mean to you to have a friend?  Forget about trauma and tragedy, like parents divorcing or grandparents dying.  What if you didn't have a friend to get through the daily things, like learning to ride your bike?  Or letting you borrow a pencil when yours broke?  Or handing you a tissue when you were about to sneeze?

What if you wanted a friend desperately, but you were dropped into a new foreign language immersion school, and you didn't speak the language?  Now you need a friend more than ever, but you don't have the tools to connect.  You can't tell them about your interests and don't know how to ask them about theirs.

Consider for a moment that this is what it's like to have autism.  You don't speak the social language, and you don't understand the nonverbal components that are inherent in the customs of this neurotypical world.  But you need a friend.  Because you know that that would make a difference for the good.  Your friend would help you make sense of what you see and hear.  Your friend would stand up for you when others, unaware of the way your brain is wired, tease, belittle, and bully you.  Your friend would see when you need space and when you need support.

When one of the 9-year-old members of our cast heard the bridge for the first time, he told his mom, while rocking to self-regulate and connect to the music's beat, "That's just like me."  She and I had tears in our eyes as we pondered and observed, convicted by the simplicity and the heartbreak of the truth of it all.

Please consider today how you can encourage your typically-developing students to be a friend to a classmate with autism.  If you're not sure how to teach them to make a difference for the good, Good Friend would be happy to help!

Monday, October 7, 2013

Bullying vs. Disability Harassment

It's a busy month for Good Friend, Inc. - and with good reason.  October is National Bullying Prevention Month.  While Good Friend's autism awareness-acceptance-empathy services for staff and students aren't specifically about bullying, they are intended to prevent disability harassment.  So for as long as there isn't a Disability Harassment Prevention Month, we'll piggyback on the bullying movement.

What is the difference between bullying and disability harassment?
The definitions of bullying are as varied as the manifestations.  Many indicate that bullying behavior must be intentional and repeated.  We take issue with these qualifiers, because they seem to excuse the behavior of the student or staff member who was "just kidding" when they were teasing a child.  Furthermore, when a child hears similar jibes over and over, though they come from an individual only once, does that make the insult any less painful?  On the contrary -- when a child hears negative messages from several people, the false validity of these hurtful comments starts to erode feelings of self-worth.

Disability harassment is basically bullying on the basis of one's different abilities.  It comes in just as many (and more) forms as bullying, but targets the perceived weakness inherent in the disability.  In the cases of students with autism, those who harass often do so because they believe the student with autism has chosen or can choose how he/she responds to the environment.  In other words, they tease self-regulating behaviors, social missteps, communication differences, sensory processing differences, etc.  Sometimes it's with words.  Sometimes exclusion.  Sometimes it's physical.  ALL the time it's WRONG.
© 2005 iStockphoto LP. All rights reserved.

In fact, disability harassment is a violation of three federal laws: the Individuals with Disabilities Education Act (IDEA 2004), Sec. 504 of the Rehab Act (1973), and Title II of the Americans with Disabilities Act (1990).

Why does it matter?
While definitions of bullying may differ, and regulations regarding bullying may vary on local and state levels, federal law regarding disability harassment trumps any confusion or ineffective practices.  For students, this becomes a matter of consideration in their Individualized Education Plans (IEPs).  If a student is afraid to go to school, or is placed in a more restrictive environment to "protect" against bullying behavior, this could be a denial of a free, appropriate public education (FAPE) in the least restrictive environment (LRE).  This is a civil rights issue -- not "kids being kids" or any other invalid attempt at rationalization of criminal behavior.

If you believe your student is being harassed, forward this document to your administrator with a specific example of the harassment and be sure to follow up.  If the school is not responding effectively, here is a chain of command for filing complaints -- all the way up to the Department of Justice.

Students with autism spectrum disorder have a right to be safe and respected at school.  Especially in those instances when they cannot speak up for themselves, we must be their voice and advocates.  Statistics indicate that nearly half of students with autism are bullied in school.  Assume the risk is real and do what you can to prevent it, or do what you must to correct it.  Let us know if we can help, and tell others what you're doing; share resources, encouragement, and positive stories!

Monday, September 30, 2013

What is the learner objective?

When we started developing our student curriculum nearly seven years ago, Denise and I knew what we, as parents, wanted typically-developing peers to know about their classmates with autism, including our own sons.  Not long after we had done some field tests, we assembled a committee to review our newly-hatched programs and services.  One of the members encouraged us to identify learner objectives for our programs to clarify the content.

Boiling lessons down to learner objectives crystalizes your message, and should drive both the message and the medium for delivery.

2009, Alcon Entertainment
Warner Bros. Pictures
One of my favorite film-based examples of a teacher having a clear understanding of her learning objectives for a lesson is in The Blind Side.  As the true story goes, eventual pro football player Michael Oher struggled greatly in school.  At the private school he ended up graduating from, his Biology teacher opted to give his assessment orally versus requiring him to read the questions and write his answers.  The academic ability she found in her student by taking that alternate approach made a radical difference in both his educators' perception of his potential and in the way his education was crafted.

Students with autism spectrum disorder are notoriously difficult to assess by traditional means.  Standardized tests are often verbally-loaded, which poses a number of problems for most children with ASD.  For example ...

  • verbal processing delay: Many individuals with autism experience a measurable, many-second time delay in hearing words and being able to make sense of them.  In timed tests, this is especially debilitating when trying to assess understanding.
  • need for rephrasing of questions: Abstract language and concepts are difficult for people with autism, who are often black-and-white, concrete thinkers.  While rephrasing questions often helps students understand the intent, this is prohibited or carefully restricted on many standardized tests.
  • fine motor impairment: Whether it's a difficulty with writing in small spaces or an executive planning problem with getting thoughts from head to paper, writing words is often hard for people with autism.

And these don't even take into account communication and sensory perception differences.

In light of these, educators and families need to be clear about what their learner objectives are.  If the learner objective is to take a high-scoring standardized test, that's one thing.  But if the objective is to understand the factions of the Civil War, or the order of operations for algebra equations, or to identify and successfully manage one's emotions, then be sure the teaching and assessment methods are individualized to the learner.

The need for clarity around learner objectives, which is not restricted to academic pursuits, was recently driven home when the meltdown of a student with ASD was perceived and treated as if it were a behavior problem.  The student presented in the morning with a number of underlying stressors, which were not evident to educators because of his limited spoken language.  What sent him over the edge was a substitute teacher, who ended up receiving a communicative swipe.  Perceived by administrators as an aggressive act, the incident prompted a phone call to the parent, who was asked to take her son home as a disciplinary measure.

Thankfully for all parties, the parent had the tools to de-escalate her son* and debrief the many people who tried to respond, reminding them of her son's existing IEP and BIP, which were full of techniques that were used successfully in the past to prevent meltdowns and/or bring them to resolution.  (*Note: While the de-escalation techniques described in the article may work for some individuals, this is by no means a universal, exhaustive, and/or exclusively recommended list.) With the proper interventions, he was able to return to class successfully and complete his school day without further incident.

Here are the lessons the student could have learned from the initial mis-handling of the meltdown:
  • I must self-regulate emotionally, even in the absence of otherwise available assistance.
  • My non-verbal means of communication will be ignored, even punished when misperceived by adults around me.
  • I will be freed from school when I use out-of-control behavior as my last resort.

Here are recommended learner objectives:
  • To recognize feelings of upset and communicate those, whether verbally or otherwise, to people who can help in the ways established through my IEP/BIP.
  • To expect that feelings of upset will be handled by trained adults without escalating those unwanted feelings.
  • To return to class following times of emotional and/or physical dysregulation, confident that systems exist to encourage inclusive practices.

So take a good, honest look at what you're trying to teach your student with autism.  Are your learner objectives and teaching methods consistent with the lessons?  If not, how can you adapt them?  If so, please share your successes with others who require inspiration!

Tuesday, September 24, 2013

Setting the Bar

I'm not an athlete.  My strength never did come from my muscles.  But I certainly do admire the way athletes challenge themselves.  It seems to me that the good ones don't so much compare themselves to other athletes, but to their own accomplishments.  Personal bests, training regimens, and individualized goals mix and mingle with creative coaches and hard work to create results.  I'm sure athletes have a brass ring they're reaching for -- an ultimate dream.  Perhaps they set their own bar (whether literally for their sport or figuratively).

I think about that bar when it comes to pole vaulting.  Where do you set it?  I'm guessing pretty low to begin, and then as your skill set improves, higher and higher.  In considering the way we as parents set bars, do we do the same thing?  Do we set the bar at a reasonable level first, then as our children grow in skill, do we move the bar, perhaps with their input, so they have a new, higher aim?

For some reason, likely sheer hope and optimism, it seems most parents set that bar quite high.  We have a picture when our children are placed in our arms of what their lives will be like.  Flashes of brilliance and talent colored by milestones and achievements.  Not a whole lot of consideration of how the skill set will be developed to get there -- the tools, supports, and resources that will be needed along the way.

Based on my own personal and professional experience, when parents of children with autism receive a diagnosis, oftentimes that bar gets knocked way down -- maybe even off the rails altogether.  And they start looking to others (doctors, educators, social workers, etc.) for where and how to set the "new" bar.  What will my child's life look like after high school?  Will he get a job?  Will he get married?  Will she be able to live independently?  Suddenly all the flashes of color become washed out to gray uncertainty; and I'm not sure why we even had those flashy colors to begin with.

None of us knows how our child's life will unravel -- whether they're typically-developing or have autism spectrum disorder.  We can look at statistics and try to come up with a framework for a bar.  But human beings are surprising, somewhat unpredictable creatures -- adept at creating and using tools.

So wrap your head around this: don't "set" the bar.  Rest it.  With those high hopes and optimism.  And methodically seek out those tools, supports, and resources -- the coaches, therapists, educators, friends, interventions, etc. -- to develop the skill set needed to get over the bar.  Then move it up, fully expecting you can raise it higher.

My son with autism is now 14.  Based on his input, we've now rested his bar at high school, an apprentice program, graduation, and a three-year college program, fully expecting him to be gainfully employed thereafter.  With the framework of his fledgling Postsecondary Transition Plan, we're working together as a team to help him smash personal bests.

So keep the cushy mat under them to protect them when they fall.  And make sure the training and the equipment they have are adequate for the attempt.  Keep celebrating achievements and learning from mistakes.  All in brilliant color.  Your student is worthy of nothing less.

Monday, September 9, 2013

A Season of Miracles?

If you've "Liked" Good Friend's Facebook page, then you probably saw the photo we posted on Sunday.  We were at Dylan's Run and snapped a picture of Potawatomi's vendor booth.  Here's the exciting explanation!

Good Friend, Inc., is in the running to be one of this year’s benefiting charities of Potawatomi Bingo Casino’s signature community program – Miracle on Canal Street. If we’re one of the 10 additional charities selected in December’s random drawing, we will use the grant to establish a "scholarship" program for qualifying Title I schools, and develop a "train-the-trainer" model for elementary school student service delivery.

Fresh off the miracles of our Kickstarter campaign and successful elementary film shoot, it makes sense to us to go for the trifecta! 

Miracle on Canal Street began 20 years ago as a way to carry on the Potawatomi tradition of nurturing younger generations so they grow to lead healthy, productive lives. Since 1994, Miracle has donated more than $12.5 million to support hundreds of local children’s charities.

Half of each $3 Miracle Bingo game played goes to the Miracle fund, which totaled nearly $1 million last year and was distributed to 30 charities in southeastern Wisconsin! You can give the gift of a promising future by playing the Miracle Bingo game now through December 12. 

Weekday bingo sessions are held four times a day and generally last two to four hours: Start times are 9:30 a.m., 1:00 p.m., 6:00 p.m. and 11:00 p.m. 

Wish us luck in the random drawing!


video

Friday, August 30, 2013

Great opportunity for siblings of students with neurological differences!


For more than six years, Good Friend has been spreading its message about autism awareness, acceptance, and empathy to those who surround students with autism spectrum disorder (ASD).  Along the way, and within co-founder Denise Schamens' own family, the unique challenges that the siblings of children with ASD face have become more visible to us as an organization.  That made us especially grateful to the Autism Society of Southeastern Wisconsin for hosting a Sibshop facilitator training event  by Don Meyer, director of the Sibling Support Project, last spring in Milwaukee.

Speaker and author Don Meyer is a pioneer in the sibling movement; he has been at its forefront for more than 25 years.  He recognized the unique concerns and strengths of siblings of children with special needs ("sibs") and decided to do something to support them.  Siblings benefit, he says, from getting to know other sibs, taking in some information, being able to ask questions, and sharing the experience – good, bad or indifferent.

Sibshops offers a model intervention for sibling support, learning and fun.  It recognizes and reinforces a strengths-based approach. It also promotes relationship building between sibs through a variety of games and activities.  They reflect a belief that brothers and sisters have much to offer one another – if they are given a chance.

Sibshops are good for the soul.  They enrich the lives of the group leaders, sibling participants, and families as a whole.  They heighten public awareness that sibs matter and should not be an afterthought when it comes to supporting families of people with disabilities.

Good Friend is proud to announce our collaborative effort with Carroll University to provide Sibshops to sibs ages 8-13, who have a brother or sister with neurologically-based differences (ASD, cognitive disability, mental health challenges, etc.).  This is not to say that other disabilities aren't equally worthy of Sibshops, but that Good Friend's expertise lies in this area.

Events for the 2013-'14 school year will be held at the beautiful Carroll University Center for Graduate Studies, located at 2140 Davidson Rd., Waukesha, Wis.  Dates are Saturday mornings, starting in October: Oct. 5, Nov. 2, Dec. 7, Jan. 11, Feb. 1, (no March event) April 5, and May 3.  Each workshop will be from 9:00 a.m. to 12 noon, with a snack provided.  Registration fee is $15 per workshop or three for $30.  (In case of financial hardship that makes the registration fee prohibitive, please let us know.)

Please contact Denise Schamens for more info or to register for one or multiple dates!

Our mission power words are "Awareness Acceptance Empathy".  We teach peers in the schools to be good friends to someone with autism (and/or another brain-based disability).  Now it's time to be Good Friends to the sibs!  By educating, supporting and fostering friendships, we hope to help these precious children in their lifelong journey as Super Siblings!

We leave you with some insight from Super Sibs, as captured in Don Meyers' The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs (Woodbine House, 2005):

What life lesson have you learned from being a sib?
  • “To be understanding of other people’s difficulties, and have empathy for those who – through no fault of their own – are faced with enormous challenges, and to value each person’s unique attributes.” (Jenna H., 17)
  • “That no matter what I do he will always be there for me.  He’s my special light in the darkness; there when all other lights go out.” (Kathryn C., 14)
What’s the toughest thing about being a sib?
  • “Having to worry about the future of your sib.”  (Melisandre P., 14)
  • “I think it’s watching her fail.  The look in her eyes would send a full-grown man into tears.  Or her being denied opportunities that other kids have.” (Erin G., 14)
  • “Knowing that I will be able to do certain things someday that my sib probably won’t get to experience, like going to college, driving, or even living on my own.” (Emily P., 13)

Monday, August 19, 2013

UW-Whitewater Study of Good Friend Interventions

Last week, Denise and I attended and presented at the 6th annual WisABA Conference.  At first, the disparity between the numbers of capital letters after our last names representing our degrees and certifications was intimidating to me.  There we were, in the company of many highly-educated and -trained professionals in the fields of skilled service delivery to individuals with developmental disabilities including autism.  Their technical language was beyond my scope of understanding, in some cases.  And while I recognize and respect the appropriateness of such education and training, for certainly the population that they serve are highly-deserving of their formal preparation to provide therapeutic interventions, I appreciate the equal commitment parent-professionals like Denise and I possess.  Furthermore, we recognize the equal devotion to positive, measurable outcomes of our interventions.

Good Friend's desire to establish an evidence basis for our services was innate.  Since 2008, we'd been seeking an independent researcher to study the effectiveness of our interventions.  Because our interventions are with the classmates and educators surrounding the students with autism spectrum disorder (ASD), we knew the validation study would have to include hundreds of participants in dozens of services.

Though our first collaboration with UW-Madison disintegrated when the professor left for a position out-of-state, another door opened in 2010 through UW-Whitewater.  Dr. Simone DeVore met with Chelsea Budde and Denise Schamens to discuss the possibility of initiating a study of Good Friend’s elementary school services.   In 2011, Dr. DeVore and her colleague, Dr. Brooke Winchell, were able to observe our staff and student trainings and develop tools to measure change following our staff in-services and Peer Sensitivity Workshops (PSWs) for grades 3-5.  They then drafted a proposal to the university’s Institutional Review Board for the Protection of Human Subjects (IRB) for approval to allow us to move forward with a pilot study.  Finding willing schools to participate in the pilot in the spring of 2012 paved the way for the next phase, which was the finalization of the tools and application for IRB approval of the full study.

The recruitment of participating schools began in the summer of 2012, with Letters of Affiliation from the University and Presentation Agreements from Good Friend.  Services were conducted between September, 2012, and May, 2013, at no charge to the host schools, but the school administrators were required to get consent from the students’ families to participate.  The schools also helped administer the pre- and post-intervention surveys, which contained both quantitative and qualitative questions.  In the end, the stack of data pictured in the last blog entry was the harvest of three years of collaboration, and was collected from some 800 participants.

Dr. DeVore and Dr. Winchell presented the findings to Denise and me earlier this month.  Based on the data collected through the study, we can say that Good Friend’s PSWs “highly influence” students’ survey answers regarding their understanding about autism (its cause and manifestations), their likelihood to interact with classmates with autism, and their comfort with doing so.  Data collected from the staff in-services highlights improved understanding of available resources, knowledge of strategies for disability harassment intervention, and confidence in working with their students with autism.

Some recurring appreciations from staff include the authenticity of our examples and personal stories, the common language we're able to provide participants, and the relevant resources we're able to explain and connect them with.  What they regret is not having the trainings earlier in the school year and more time to troubleshoot!  In some of the peer participants' comments, it's clear they've absorbed key concepts and are using the terminology accurately!

Denise is looking forward to attending Dr. Winchell's co-presentation with Dr. DeVore of "Autism Peer Intervention Validation Study: Promoting Teacher Knowledge and Peer Sensitivity", based on the research Council for Children with Behavioral Disorders’ annual conference in Chicago, Ill., next month.  The professors are also creating a presentation proposal for the university's Early Childhood Conference (April, 2014).  Furthermore, they are initiating a text analysis of six years’ worth of Good Friend student question cards collected during Good Friend's PSWs.
findings, at the

We are taking the study-based recommendations from the professors and tweaking our services, with the intention of collaborating again with the University in the coming years to do both PSW student subject case studies and longitudinal studies on PSW classrooms.

Frankly, it's a great time to hop on the Good Friend bandwagon!  If you'd like to contribute your time and talent to our mission, we'd be glad to have you!  Contact me or Denise and we'll get you plugged in.

Tuesday, August 6, 2013

A BIG week!

Sometimes, Mondays ROCK!  And yesterday was one of them.  Good Friend kicked off an exhilarating, exhausting week Monday morning with a summary of the findings of the research study conducted by two professors at University of Wisconsin-Whitewater.  We're reserving the best bits of news for the guests of our annual Member Appreciation Night this Friday!  But what we can say is that both our staff in-services and Peer Sensitivity Workshops make a measurable, positive difference in expanding autism awareness, acceptance, and empathy!  Denise and I are still trying to wrap our heads around the magnitude of Simone DeVore and Brooke Winchell's findings, which will be presented at the Council for Children with Behavioral Disorders' annual conference in Chicago next month.
Dr. Brooke Winchell had her work cut out for her as she began to pour over the raw data from the surveys UW-W collected during Good Friend staff in-services and Peer Sensitivity Workshops in the 2012-'13 school year.

Zooming back to host the first of our two open casting calls for "We ALL Fit", our new elementary school peer autism awareness short film, we shifted from one excitement to another.  We met 23 hopefuls for the project, and are realizing we'll have some difficult decisions to make once we complete today's session.  We welcome you to audition!  We have some specific profiles we're looking for, and no acting experience is necessary.  Here's the list:

  • girl with autism, age 6-10, who has some reliable spoken language
  • boy with autism, age 7-11, who uses a type-to-speak device
  • boy age 2-4, dark-haired
  • girl age 2-4, blonde-haired, willing to have a tantrum for the camera
  • extras: six 10-11 year-olds (mix of boys and girls), three adults (age 25-65), two 12-15 year-olds

Just show up at Citizens Bank of Mukwonago in Waukesha near Center Rd. and Hwy. 59 and go upstairs to the Training Center between noon and 3 p.m. TODAY for a quick on-camera audition.  Call Denise at 262-391-1369 with any questions.

We hope to introduce you to at least a few of our 30 newly-chosen cast members at Friday's Member Appreciation Night.  How many more reasons do you need to join us??  Awards, celebrations, new study findings, an Aaron Rodgers autographed football up for grabs ... PHEW!  Like I said, it's a BIG week!  If you plan to be at Steinhafels in the Community Room at 7 p.m. on Friday, please email Denise if she doesn't know already.