Happy Holidays!

I will be refraining from writing a blog entry this week and next to celebrate the season with my family.

If you have enjoyed or benefited from reading these posts, what a lovely reciprocal gift!  Many of you have sent encouraging remarks over the past year, telling me of the ways you're promoting Good Friend's Awareness-Acceptance-Empathy message.  From posting entries on your office door to using specific pieces as discussion platforms during staff meetings, you are putting words into action.  For that I thank you!

Photograph: Andreas Kuehn/Getty

During this final week of 2012, I encourage you to help us promote our mission through your charitable gift.  Donations postmarked by December 31st can be mailed to Good Friend, Inc., 808 Cavalier Dr., Waukesha WI 53186.  Online donations (click on the Donate button) will be accepted through midnight EST.

Warmest wishes to you and yours for a holiday filled with understanding and friendship!

A Spectrum of Friends

First, to honor the lives of the students and staff lost in the Sandy Hook community in Connecticut ...  There is no amount of explanation that will heal hearts, but we hope our prayers for the survivors and tears for the slain will resound across miles and time.

This week's topic was to be based on friendship in elementary school -- a follow-up to last week's thoughts regarding peer relationships in early childhood.  It seems now, with these budding first grade friendships forever frozen, a respectful tribute of sorts.

There are three main considerations of peer relationships in elementary school as they apply to students with autism spectrum disorder (ASD).  First, that they are a necessary part of social-emotional development and mental health.  Second, that they will exist, but perhaps to a differing depth and breadth than their neurotypical (NT) peers will experience.  And finally, that they should be specifically developed and nurtured for mutual benefit.

As we look at the determinants of quality of life for adults living with autism, we notice that connections in the community are key.  Jobs, recreational opportunities, and social/familial relationships help us, whether we have typically-wired brains or not.  Learning to form and derive enjoyment from these connections starts in elementary school.  Tony Attwood, author of The Complete Guide to Asperger's Syndrome and a world-renowned clinical psychologist specializing in the treatment of individuals with ASD, notes that the ages of 4 to 6 years are critical for motivating these early friendship skills.  While social impairment is a diagnostic criteria for an ASD diagnosis, it doesn't mean that relationships are less important to the development of someone with autism.  It helps to understand, however, that these relationships may look different than those between NT peers.

Many individuals with autism prefer to interact with people either younger or much older than they.  In the case of elementary school students, the 3rd grader may gravitate toward 1st graders on the playground; or the 2nd grader may bond with his speech-language pathologist versus his classmate.  In the case of the former, delayed social maturity may play a role, as well as a sense of competence around less-complicated unwritten social rules.  For the student who prefers to socialize with adults, contributing factors could include a penchant for specialized conversational topics (i.e., migratory patterns of birds or dinosaurs of the Mesozoic Era), an acceptance or level of patience not experienced among peers, or a gravitation to the familiar (in the instance of children receiving many hours per week of adult-driven therapies and interventions).

Whatever those early connections are, channel them into platforms for generalizing positive social behaviors.  Speech therapists can use the foundations of these friendships to seed new social skills, such as turn taking in conversation or noticing tone of voice and body language.  Since words only account for (at best) a third of our communication, "speech" skills are inextricably tied to these social nuances so elusive to our friends with autism.

So maybe elementary school-aged children with autism might not have the quantity of friends their NT classmates have, but the quality of their early friendships is immeasurable.  They are the building blocks of critical social development, eventually contributing toward peer acceptance and positive self-image.

And we should not ignore the benefit that students with typical brain development derive from these opportunities to learn, relate, and grow.  One of my son's very first friends was able to decrease his own school-related anxiety by focusing on the help he provided to my boy.  Studies on Peer-Mediated Instruction and Intervention programs have demonstrated that specifically-trained mentors achieve better academically and feel more fulfilled because of their engagement in these relationships.  They become less self-absorbed and more empathetic.  They develop leadership skills and flexibility -- traits which will eventually make them more employable, as well.

Ultimately, children with autism should have a spectrum of friends: ones they can share their special interests with, ones who help them be the best social being they can be by gently pushing development of new skills, ones they can feel competent with at their social-emotional level, and ones who accept them right where they're at, regardless of outward manifestations of their autism.  Are we as NTs any different in our need for a diverse friend base?

Autism and Peer Relationships in Early Childhood

In the state of Wisconsin, the average age for receiving an autism spectrum diagnosis is 4-1/2 years old (CDC, 2012).  By this time, while most parents report that their child later diagnosed with ASD exhibited symptoms before seeking a medical diagnosis, children should already have been receiving services through Birth to 3.  That being the case, many of these children transition into their school district's Early Childhood program (age 3-5, or kindergarten), where, hopefully, they have access to typically-developing peers.

In the case of my now adolescent children with autism, we are fortunate enough to live in a resource-rich area where my intentions to maximize their social and educational experiences were realized without extraordinary effort.  Sure, I had to serve as my daughter's "educational assistant" in a private day care when she was 3 years old because she wasn't yet toilet trained and required additional social support, but it provided opportunities for me as a mother to recognize what developmental areas required extra attention and focus on those in- and outside the day care setting.

One of those areas for both of my children was their relationship development.  When I was asked by neuropsychologists during their diagnostic interviews how many "friends" my children had, I guess I wasn't so sure of the definition.  It was loosely described to me during the evaluation process as particular same-aged peers whose company they sought out or enjoyed.  Having no "normal" baseline before I observed my children with their classmates, I assumed the parallel play my 4-year-olds engaged in was age-appropriate.  But by the definition of friendship in a recent textbook I was reviewing in preparation for a guest lecture, my children with ASD had no friends.

However, I think we need to measure and define friendship a little differently for our students with ASD.  If we can base friendships on shared interests, mutual admiration, and general good will (versus willingness to share, the ability to enter play situations, and solve conflicts, for example), then it will be easier to pair typically-developing students with their classmates with autism.  Students with ASD may be unskilled at initiating social interactions, but that proclivity my 3-year-old daughter had to pet her classmate's long, silky hair both satisfied a sensory input desire and served as a greeting.  My 4-year-old son's proximal babbling with eye contact demonstrated to his classmate that he wanted to communicate with him.  These, in my opinion, are the seeds of relationships and should be celebrated as such.

So the next time you see a 3- to 5-year-old with autism in the vicinity of neurotypical peers, encourage the budding healthy interactions without concern about the quality or duration.  Keep rewarding efforts to engage peers while teaching social understanding and motivating students with ASD.  The baby steps you take in these early years are the training exercises for the races they'll run as they get into intermediate elementary education and beyond.

What precious "friendship skills" have you noticed in your young students with autism?

Giving Tuesday

Have you heard of this concept?  There's Black Friday the day after Thanksgiving which generally helps big box retail; and Small Business Saturday follows that, whereby consumers are encouraged to "shop small" and patronize their local retailers.  Today is Cyber Monday, and I'm sure many of you are postponing reading this week's blog to get all the online deals.

Tomorrow is an important day for autism awareness, acceptance, and empathy.  At least it is to us at Good Friend.  Giving Tuesday is about looking at the bigger picture -- drawing back from the sales and the hype and considering how you want to make a difference.  How do you want to give?  Do you want to give of your time to your favorite cause?  Do you want to donate on behalf of someone on your gift list?  Do you want to purchase something that supports your beliefs?  Do you want to share your priorities?

Good Friend is drawing very near to reaching directly its 20,000th person with its awareness-acceptance-empathy message.  This has happened because you have given.  If you've purchased a DVD, you are both sharing the message with others through the use of the peer sensitivity film and helping us to teach students to be good friends to their classmates with autism.

So on this Giving Tuesday, please honor our 501(c)(3) nonprofit: Buy a t-shirt for your favorite service provider or relative, make a donation in honor of a loved one with autism, or share our mission with your Facebook and twitter contacts.  We are so thankful for your support!

I speak autism!

As part of Good Friend's Peer Sensitivity Workshops, Denise and I conduct phone interviews with the primary caregiver and most relevant staff member so we can get an understanding of how our student subject "ticks".  We have a prescribed form we go through, typing answers and sometimes delving deeper into comments as we go along.  I often find myself chuckling at many of the described behaviors.  Clearly, the interviewee doesn't find these eccentricities nearly as charming as I do.  As a result, I can sense the parent's or teacher's confusion on the other end of the call about my lighthearted giggle.  Sometimes, I have to explain.

I have two children with ASD, ages 13 and 11.  And I've met dozens and dozens of individuals with autism through my experiences, both personal and professional.  As I make connections about these amazing people and consider the factors driving many of their behaviors (preferences, aversions, repetitive acts, etc.), I can't help but feel blessed to know them and understand the meaning of these behaviors.

For example, I've heard about so many children with ASD, boys in particular, who do not like babies.  I've come to understand that babies present a host of unpredictable sensory experiences (i.e., loud crying, smelly spit-up and messy diapers) that make being in their presence anxiety-provoking for these guys.  This is true for my own son, who has several young cousins -- many of whom have gone rather "unappreciated" by my boy until, perhaps as preschoolers, they're ready to show some interest in his favorite topics.  So these moments of his endearingly awkward interactions flash before my eyes as I'm talking to these teachers and parents, and I have to smile.  Sometimes out loud.

But making connections and understanding how people with autism are wired doesn't mean that autism is my native language.  I speak it because of cultural immersion, but I wasn't born with autism in my body.  So while this immersion makes me fluent in autism, it doesn't make a true expert.  Certainly, I can interpret autism for neuro-typicals who don't speak the language themselves, but the best way to understand autism is to interact with the experts.

Not sure why your person with autism behaves in a specific way?  ASK (politely in a moment of calm and clarity)!  You might be surprised about the insight you gain and the level of self-awareness your person has.  Little or no reliable means of communication yet?  Play detective!  The Iceberg Model of Autism (Eric Schopler, TEACCH, 1994) reminds us that the observable behavior is just the tip of the iceberg, and what's beneath those acts is generally a combination of environmental contributors (sensory perception, social or processing differences, etc.).  Listen actively.

What discoveries have you made as you've learned the language and culture of autism?

The Power of Compliments

This week, I'm going back to Tony Attwood's presentation ...

So many of the things he said during last week's seminar resonate beyond the population of individuals with ASD.  He spoke of the importance of compliments in relationships, particularly as they apply to romantic relationships.  In fact, nearly 15 years ago, he worked with Carol Gray to develop a prescription of sorts for compliment formulation and delivery for adults with ASD, available through this download.  The argument for the necessity of such a manual is rooted in both the complexity and the benefits of compliments.

submitted by Gagandeep

The definition seems straight-forward enough:

com·pli·ment/ˈkämpləmənt/

 

Noun:

A polite expression of praise or admiration.

But the practicing of compliment delivery is littered with subtleties that sometimes we neuro-typicals take for granted.  Questions arise:  How many compliments should I give in a specific time frame?  And what should I compliment someone on?  Does it matter if the compliment is given to a man or woman?  Are certain compliments inappropriate to give to a stranger, but okay for a close friend? ... and many more.

When we were developing Good Friend's curriculum for Peer Sensitivity Workshops five years ago, we were inspired by Ellen Sabin's inclusion of an exercise in The Autism Acceptance Book that encourages classmates to compliment each other.  When we practiced this in schools, we were dismayed by how difficult it was for elementary school-aged students to understand and deliver compliments.  They, particularly the girls, have little trouble complimenting an article of clothing or a hairstyle, but speaking about character or skills in a kind way is clearly not an inherent ability for most students.

Imagine how much more difficult it can be, then, for these NT peers to compliment their classmate with ASD!  With the societal disorder of seeing differences as deficiencies, looking for the expressions of praise or admiration for a person with autism seems foreign.  But when given the proper focus on a person's strengths instead of his weaknesses, the compliments flow freely.  And since Tony Attwood notes that people on the spectrum crave positive feedback and are desperate for respect and value, we who surround these individuals should be lavishing compliments on them as well.

What was the last compliment you gave your person with ASD?

"You're smart when you're calm."

Thankfully for me and my personal and professional life, there is no shortage of brilliance in the autism universe.  I've had the privilege, beginning in 2004, to see dozens of people through conferences and seminars who've become my autism heroes over the years.  Their knowledge of autism and related experience has made me a better mother and educator.

Tony Attwood's was the first presentation I attended.  At the time, I had a five-year-old son with PDD-NOS and a three-year-old daughter with Asperger's.  I just attended a seminar last week and enjoyed another entire day of Dr. Attwood's rich teaching, five years into Good Friend on the professional side and now the mom of a 13-year-old and an 11-year-old on the personal side.

One of the things clinical psychologist Dr. Attwood reminds his patients with ASD is that they're smarter when they're calm.  If they can keep their anger and anxiety levels low, they'll be able to think more clearly.  He compares that frontal lobe of the brain to a filing cabinet full of past conflicts and resolutions.  When the emotional fervor rises, it locks the cabinet and access is denied.  So if an IQ test were administered in this emotionally wrought state, the measure would be significantly lower than if the person were able to access that important information.  It's not that the person's intelligence is lost, but that it's not functional.

The truth of Dr. Attwood's statement resonates beyond the population of people with ASD to those of us with "typically-developing" brains.  As parents, when we get flustered by our children's behavior, we may respond by raising our voices, executing ineffective punishments, or making impractical threats or promises in the heat of the moment.  Teachers, some of whom are chronically under-supported in their challenging roles, may resort to the abhorrent practice of bullying themselves, and could even get so stressed out that they manifest symptoms associated with trauma.

Thankfully, there are plenty of preventative measures and practices that can help us all remain calm, and therefore smarter during crises.  Simple breathing exercises, over-practiced during calm times, can be very handy when stress levels rise.  Those who practice yoga, meditation, and/or visualization, or use guided imagery (even Cognitive Picture Rehearsal for our students who need visual supports), also report better quality of life.  Progressive Muscle Relaxation may help identify tense areas of the body and then release that tension.  And whenever possible, taking a weekend away or finding some respite care can provide a whole new perspective when returning to a challenge.

What do you do to stay smart during a crisis?  How have you helped your child develop and access coping strategies?

"Baby, You're a Firework!"

Were you one of the two million people to see the clip from Comedy Central's "Night of Too Many Stars" either last night or before then?  It featured 11-year-old Jodi DiPiazza of Rochelle Park, N.J. -- a talented pianist with autism.  She sang one of her favorite songs for the benefit: Katy Perry's "Firework". And the pop sensation joined her on stage in a magnificent, meaningful duet!  What an emotional few minutes as you considered the appropriateness of the song's lyrics and how far Jodi  -- this streak of light traveling across the sky -- had already come.  Perhaps the journey seemed slow to her parents at times, but we saw her talent flash before our very eyes.

Early Sunday morning was the Orionid meteor shower, and a group of friends and I waited up until after midnight to see it.  We were away from the bright lights of the city, so we were literally beneath a night of too many stars.  We couldn't possibly see the entire speckled sky, and when one of the five of us missed one of the bits of burning debris cast from Halley's Comet, we wondered aloud and with disappointment where it was seen.

Some of the "shooting stars" were spectacular, and others seemed underwhelming.  But we kept waiting and watching, despite the cold ground beneath us and the late hour, because we didn't want to miss "the big one."  And finally, almost an hour into our observation, all five of us saw the most dazzling singular display yet; and we opted to return to the warmth of home.

What if we had given up too soon?  What if we weren't watching the sky together at that moment of time?  What if our experience didn't meet our expectations?

As the parent of two children with autism, one Jodi's age and the other a teenager, I can apply all of those questions to raising these shooting stars.  I was expecting parenthood to be like fireworks: brilliant colors, symmetry and balance, glorious finales.  What I got instead was this never-ending meteor shower -- unpredictable in its highlights, but perpetual in its beauty.  The air might be cool enough to drive us indoors, and the night so long that we want to close our eyes.  But if we wait long enough -- if we widen our perspective -- we'll see that long tail of triumph yet.  And it will keep us there in anticipation of another brilliant success.

"Oh yeah, you blend."

A family's journey in dealing with autism is a highly personal one.  There are stages of grief, not unlike those brought on by the death of a loved one, that follow a diagnosis of autism in a young child.  The timeline and order of those stages are different for everyone.  There are people we meet along the journey: some of them walk with us, some point us in the wrong direction, and others give helpful navigation tips.  I don't want to pass judgment on anyone's journey.  It is our own.

Every now and then, I have the privilege of talking to a parent who is "stuck".  They're having a hard time moving through a certain stage or preventing themselves from returning to it; it's become quicksand, and they're sinking.  Ignoring families at this time in their lives is cruel, so we want to extend a branch to them to hold on to and maybe even wrestle them free, if they're ready.

Denial is such a common, natural reaction to so many facets of an autism diagnosis and raising a child with autism.  We want to believe our child is or will be "fine" -- that the symptoms of autism will subside, and he or she will eventually fit in seamlessly with his or her peers.  The rarity of this phenomenon isn't as discouraging as the light of its hope is energizing, so it's constantly drawing us in.  And hope is a good thing!  We should always hope for the best for our children, expect much of them, and accept nothing less than a coordinated team working together toward lofty goals.

Along this journey, we have to access new tools.  Each leg is different, and requires different supports.  One of the supports our families need is social.  Children with autism need social understanding and social skills to function well in inclusive settings, and their neuro-typical peers need specific autism awareness and acceptance training so they can support their classmate with autism.

Yet we have encountered families during our Peer Sensitivity Workshops who believe their child is indeed blending with their class, and does not want his or her peers to know about autism and how the diagnosis relates to him or her.  There have been times when such families would not offer consent for the inclusion of their child with autism in the training, but other families in the same grade level with children on the spectrum have.  (See our past blog posting on that.)  So we proceed with the training, speaking only about the student for whom we have consent.  More often than not, Denise and I can tell within minutes who the other child on the spectrum is.

And, for me, it always brings to mind a picture from My Cousin Vinny.  Joe Pesci's character (Vinny Gambini) looks over at Marisa Tomei's Mona Lisa Vito, in her black pleather miniskirt, and comments that she "sticks out like a sore thumb" in the small Alabama town they're in.  She eyes him up and says sarcastically, "Oh yeah, you blend."  It's an irreverent comparison, but can be applied to the behavioral and social differences of some intermediate elementary students with and without ASD.

Most of the time, our children with ASD don't blend in with their classmates.  They have different ways of self-regulating, initiating (or not) social interactions, and processing and responding to sensory input. To ignore these things -- to deny these differences -- won't make them go away.  Children often devise their own explanations for unexplained behavior, and you can imagine where that might go.  Our children with ASD may not blend, but they don't have to be sore thumbs!  We educate typically-developing peers so even when they don't blend, they mix well.

Holiday Drop'n Shop

Some of us need a little extra incentive to do our holiday shopping.  Denise and I were thinking of these  people when we dreamed up Good Friend's Holiday Drop'n Shop.  Once the full-on retail fervor of Black Friday hits, malls are prohibitive for the faint-of-shopping-heart.  Why not get a big chunk of the gift list taken care of beforehand?  And if you were imagining your shopping nirvana, would it include chair massages?  And chocolate?  Maybe a warm beverage to wrap your chilled hands around?  Would you like something for nothing?

Yeah ... me, too.

On Saturday, Oct. 27, from 10:30 a.m. until 1:00 p.m., meet us at Steinhafels in Waukesha, Wis.  We'll be in the Community Room, pumping laid back Christmas music over the speakers and snacking on various desserts while we peruse the cash-and-carry and catalog offerings of the following vendors: Lia Sophia (jewelry), Mary Kay (cosmetics and skincare), Pampered Chef (kitchen essentials), PartyLite (candles and home decor), Pepper it Up (custom paint-your-own pottery), Tastefully Simple (food ingredients), T.F. Woodworking, Thirty-One (tote bags), Tupperware (food storage), and Uppercase Living (wall appliqués).

Just walking through the door qualifies you (and our other guests) for some great door prizes, including those pictured here.  And there's NO admission fee!  Want your name entered more often for the giveaways?  Every time you make a purchase from a vendor, you'll get another chance to go home with an item.  Here's the hitch: You have to be present to win.  If we call your name and you're not there, we pull another one.

So come for the shopping, stay for the demonstrations and prizes, and help Good Friend create cultures of acceptance in schools!  All of the vendors are donating a quarter of their proceeds to further our autism awareness-acceptance-empathy mission!

Questions?  Contact Denise, 262-391-1369.

Bullying Prevention Month

A couple of my Facebook friends have sent me the same meme, which says something along the lines of, "I don't think the worst thing in the world is raising a child with autism, but raising a child who is cruel to someone with autism."

Bullying is not a problem of childhood.  It's not a developmental phase.  It's not a cry for help.  It's "a profound public health problem"; an unhealthy social practice that's been allowed to exist and morph in so many environments that it's become pervasive.  And as a society, we have too many people standing BY and not enough people standing UP when they see these power imbalances.

The disgust with the lack of engagement has reached a tipping point in the last five years.  As a result, new bullying prevention and awareness programs and initiatives are popping up all over the place.  Good Friend, Inc., has been differentiating between disability harassment and bullying since 2007.  But in the absence of a Disability Harassment Prevention Month, we'll piggyback on the Bullying Prevention Month efforts.

On Wednesday, Sept. 26, which happened to be Bullying Awareness Day in Wisconsin, BULLY put out a great "Battle of the Bullied" infographic which put some statistics behind the need for grassroots bullying prevention campaigns.

Stomp Out Bullying™ has initiated Blue Shirt Day™ as a World Day of Bullying Prevention.  So if you're not wearing blue today, you've missed that opportunity.  But don't fret -- you can (and should) still wear orange on Unity Day, Wednesday, Oct. 10.  And you can do something on an even grander scale during this month, which is National Bullying Prevention Month.

Some people might be feeling inundated with requests to draw attention to bullying and prevent this epidemic.  If you're one of them, please let me know which day we can stop thinking about the social emotional health of our children.  Let me know when we should stop offering practical tools to bystanders so they can intervene in a bullying situation.  Tell me when our children's safety and relational aggression are no longer concerns.

For the rest of you who will heed the calls of these wonderful organizations and join in demonstrations of support, be sure you post pictures of your blue or orange shirts on our Facebook page, or tweet them with hashtag #GoodFriendInc.

The Social Butterfly Effect

This week's post is the kind that will make you science types cringe.  I'm going to get all metaphorical with your physics and play on words held by theories because I like the way it sounds.  So there.  But stick with me.

Last week, I gushed about the touchdown play my son's team orchestrated for him during a recent flag football game.  Let me tell you how that ten-second huddle will lead to the meaningful employment of an adult with autism 20 years from now.

First, a little something about the butterfly effect.  The general idea is that the flap of a butterfly's wings can impact weather patterns somewhere else in the world.  The thought of the gentleness of this silent flight rousing a tempest espouses chaos theory talk that's way over my head, but I can grasp the impact on atmosphere.

In sociological terms, we think of the ripple effect.  Someone touches their community with a charitable act, and the outgrowing concentric circles create pay-it-forward waves of goodwill.

ripple effect © by leafy

Think of that touchdown play as something larger than passing a ball.  Consider the egos that were set aside in order to build another's up.  Take a moment to realize the cooperation, the belief in the underdog, and the flexibility these teens exhibited.

Managers -- when you're putting a team together at work, don't you want to choose the players who know how to work together and focus on each others' strengths instead of attacking weaknesses?  Don't you want to reward the adaptability that leads to the desired outcome?  These are the qualities of leaders.  And the employees who clinch the deal and look back with gratitude at their colleagues who helped put it together are the ones who earn respect and work with humility.

When your student with autism applies for a job someday, he may interview with the quarterback for my son's flag football team.  And that young man will think of the day he huddled his teammates behind that line of scrimmage, and gave a kid with autism a chance to be the team hero.  He'll remember how little they as a team had to change to make a world of difference for my son.  And the difference my son's joy made on that 8th grader's heart will encourage his adult self to hire your student with autism.

All because a butterfly flapped its wings.

The Social Currency of Extracurriculars

During intramural flag football last week, my 13-year-old son with autism scored a touchdown.  But it was so much more than that (as if that weren't enough of an accomplishment!).  It was a snapshot of what every inclusion proponent dreams of.  Two teams of 7th and 8th grade students played, my son's team with enough members that they had to sub several players in every four plays (or so).  But let me give you some context first, which likely applies generally to middle and junior high schools.

Since there aren't enough resources in our school district to provide support personnel for students with disabilities, it's hard to find them in activities beyond the school day.  Yet that's exactly where they need to be in order to build rapport with typically-developing classmates.

There is little opportunity for socialization at school outside the classroom.  With teaching time at a premium, educators of middle school core curriculum classes have enough time to do a bit of community building at the beginning of a term, but that's about it.  Then, just as students with ASD are getting comfortable enough with their physical circumstances to learn about their classmates, it's time to jump into learning.

What about socializing at lunch, you ask?  Have you been in a middle school cafeteria?  It's about the most awful sensory environment imaginable.  Many students with autism have to devote their entire well-being to keeping it together in order to eat.  And I'm sure I don't even have to tell you about the bus rides to and from school.  If students are on the general ed bus, they're likely anxiety-ridden on the way to school and exhausted on the way home.  Plus, in both environments, there is likely a lack of adult supervision, which means no safety net if the student with autism makes a social misstep (or worse yet -- the neuro-typical students with whom he or she is attempting to communicate become disrespectful of the outreach).

And the social currency in middle school is the extracurriculars: sports, clubs, councils.  This is where students express themselves in a context of what they've chosen and enjoy, and where they're noticed, for better or worse, by their peers.  These are the stories they tell their friends in text messages and at lockers.  This is where, when we support our students with autism, they can become heroes.

So I'm glad to be there as a support person for my son when he wants to play flag football.  I will admit that I remain cautiously optimistic about good outcomes for these opportunities.  When it comes to competitive performance, my son has two modes: horrible, negative self-talk or animated, celebratory "smack talk".  The former sounds whiny and the latter, boastful.  We (the entire educational team at school, from the special education teacher to the speech-language pathologist) work on moderating these extremes outside the games, along with providing visual explanations of the rules and positions involved in the sport.  We also talk about what it means to be a good teammate.

Clearly, this last piece is catching on this year.  All these years of peer education and character building have laid a foundation for this touchdown moment.  My son has made a positive enough impression to be accepted onto a team, and the members have sized up his abilities.  They've taken a couple cues from the way adults interact with him, but at least a couple of them feel comfortable to work it out on their own.  My big 5' 7", 165-pound 8th grader was content to be a lineman for the first half of the game, but was clearly jonesing for an opportunity to catch the ball.  So his team set it up.  And the other team saw it.

The first play failed ... miserably.  The quarterback tossed a soft sideways pitch to my boy who caught it, made a few hesitant leaps forward, and threw it clumsily back at an opposing teammate, who luckily couldn't catch the wobbling ball.  The second attempt was better planned by the quarterback, who huddled everyone together briefly at the line of scrimmage, but made very sure my son knew what to do.  The snap to the quarterback ... the QB drops back ... my boy runs a few yards out and up ... he receives the pass!  But this is the coolest part -- the QB and the linemen start running ahead of my boy to make a path for him along the sideline; and the other team sees what's happening, and a couple of the chasers lose steam.  As everyone is cheering for him to make it to the goal line, a boy comes perilously close to snapping my son's flag from his belt, but tumbles off out of bounds behind him instead.  My son stood ecstatically in the end zone, jumping for pure joy, while everyone celebrated his accomplishment.

And as I was thanking his teammates and the other kids for orchestrating the triumphant play, one of the girls from the other team said to me on the way back down the field to receive the punt, "That boy who fell is my brother.  He was really trying to get him.  That touchdown was all him."

I know middle schoolers don't want their parents around at school, and they all want to find their own way.  But I'll tell you what: I am so thankful to be the mom of a boy with autism.  Because if I weren't, I wouldn't have had to chance to see what a hero all our kids can be.

Blaming the Victim

An article published online in the Archives of Pediatric and Adolescent Medicine last week regarding autism and bullying set the news and social media ablaze with headlines and commentaries.  As a parent, professional, and advocate, I noticed a disturbing but familiar pattern about the "angles"; there was a lot of victim blame going on.  Just read these headlines and pull quotes:

Why autistic kids make easy targets for school bullies from TIME, posted in the Health section of CNN.com. "Many people with autism have trouble recognizing social cues, which makes them awkward around others. They also often engage in repetitive behaviors and tend to be hypersensitive to environmental stimuli, all of which makes kids with the disorder ripe targets for bullies who home in on difference and enjoy aggravating their victims."

School bullies prey on children with autism from The New York Times. "Children and adults with autism spectrum disorders often are socially awkward and have difficulty communicating and recognizing social cues. Another hallmark of the disorder is a strict adherence to rituals and habits. 

"'Many of the defining characteristics of autism are the ones that put them at greatest risk of bullying,' said Dr. Catherine Bradshaw, deputy director of the Center for the Prevention of Youth Violence and an expert on bullying at Johns Hopkins University."

Indeed, one could find encouraging, helpful statements in the reports.

In the story on CNN.com, author Maia Szalavitz writes, "Research finds that the best anti-bullying programs are comprehensive, involving the entire school and not just individual students. Programs that work well tend to encourage a warm school environment in which diversity is celebrated; they also rely on adults at the school, from the principal to the lunch ladies, to set a tone that clearly indicates that bullying isn't acceptable. 

"Studies find that students in schools that create such a welcoming atmosphere not only perform better academically, but also have lower rates of behavior problems like alcohol and drug use."

The last bit of the Conclusion from the Archives research study abstract notes that a goal for future bullying prevention programs is "increasing the empathy and social skills of typically developing students toward their peers with an ASD".

The good news is that Good Friend, Inc., has been creating tools and conducting services to do just those things for more than five years.

We appreciate educators, parents, and therapists who are working creatively and tirelessly to assist adolescents with ASD in social understanding and skills training.  And while many of those interventions are helping students with ASD become more socially aware, that focus is narrowed to just over 1% of the student population.  And there is no depth of social understanding that will change a person with autism's neurology; their brain will always be wired differently.  It is therefore ineffectual to continually state the characteristics of students with autism that make them vulnerable.

What we need to do instead is focus on the typically-developing peers, some of whom are perpetrators, others bystanders.  These make up the vast majority of the student body.  By creating autism awareness, teaching acceptance of differences, and fostering empathy for their peers with autism, we are preparing school communities to be full of UPstanders who will not stand by as their classmate is tormented.  They will have an understanding of "invisible disabilities" such as autism commensurate with their social ability to navigate complicated relationships.

In other words, instead of putting the onus on the child with autism to change, we are changing the school climate, from the administration on down.

Resources for Wisconsin and beyond!

Part of the fun of directing a nonprofit organization is allowing its impact, versus its bottom line, to be a derivative of success.  Good Friend, Inc., co-founder Denise Schamens and I take most of our salary as kudos and compliments, thanks and hugs; they are far more valuable than dollars and cents.  By investing ourselves in personal and professional development, we can multiply our resources so as to divide them equitably between home (since we're both parents of students with ASD) and work.

Families and educators often derive similar payouts from autism-specific training.  Recognizing both the importance and the mutual benefit, the Wisconsin Department of Public Instruction (DPI) graciously offers quality learning opportunities to anyone who interacts with students with autism in the state.  From free downloadable webinars to two-day continuing education seminars conducted in various locations in the state, there's something for everyone -- from the parent of a recently-diagnosed kindergartener to the program support teacher who wants to know more about functional behavior assessment (FBA).  Don't see something close enough to your area?  Check with your Cooperative Educational Service Agency (CESA) to see if they have any offerings.

Not from Wisconsin but still want resources?  Those links are there, too; a couple of the best being Autism Internet Modules and The National Professional Development Center on Autism Spectrum Disorders.

Even if your school foregoes Good Friend's staff in-service, there are plenty of places to go for specific learning about this population of students who deserve to be taught with expertise and treated with understanding.  As I'm sure Wisconsin educators are aware, this week begins the Seclusion and Restraint legislation passed as 2011 Wis. Act 125, which prohibits the involuntary separation of a student from his or her peers and the use of physical restraint, except in specific cases of imminent risk of bodily harm.  If ever there was a time to realize that an ounce of prevention is worth a pound of cure (and a looming lawsuit), this is certainly it.

Three cheers for the lifelong learners among us!  Hip hip hooray!  Have a wonderful 2012-'13 school year, and do say "hello" if we're at a training together!

What's so special about YOUR friend with autism?

I know what's special about my kids with autism.  And I'm talking special interests here -- fascinations, epic collections, subjects of deep knowledge.  I'm sure you have some of your own, and people give you gifts in kind, celebrating your passion.

Yet for some reason, we as caregivers are tempted to put a ceiling on these passions when they become uncomfortable for us as spectators.  We decide they love Power Rangers a little too much, or they spend a bit too long staring at their Pokémon cards.  I get that.  We want them to have age-appropriate interests and a broad range of them.  The cool thing about many people with autism is they often know what they like (and what they don't) with certainty, and at an early age.  Sure, some fleeting affairs of the heart will come and go; but they have a true love. What's so wrong with that?

I recall trying to use my son's Star Wars interest to create a math worksheet when he was in elementary school.  I thought using this graphic illustration of a word problem would be motivating for him.  The real problem was that he knew much more about Star Wars than I did (still does) and got stuck on my inaccurate labels.  (Luke Skywalker wouldn't buy another light saber, for the record; he only has one.)  So when you do use your student's interests, make sure your intel is legit.

Or let your student lead the way!  Allow him or her to showcase that vast expanse of knowledge, either to a small or larger audience, as a way to celebrate individuality and competence.  I know my son's summer school teacher used his special interests to mutual advantage during his reading class.  By allowing him to select books in his preferred topic and genre, she was able to get more engagement from him.  (See what Paula Kluth has to say on the topic for teachers.)

And at the end of the session, she sent a postcard.  The note referred to my middle schooler as a "fantastic leader" and "a pleasure to have in summer class."  Imagine that.

So get to know your classmate or student with autism by starting out with their special interests.  And be prepared to listen!

Back-to-school Top 10 List

I was all excited recently to see a top 10 word list regarding autism and bullying.  And I will admit that I was a little disappointed when I read the list.  While I understand the desire to teach specifically students with autism what negative social things are out there, I don't find it helpful.  So here's my Top 10 List, inspired by Good Friend's mission:

1. Educate. I really don't believe that "kids are mean" cliché.  I believe they're either ill-equipped with the proper knowledge of their differently-abled peers, or are lacking the proper social-emotional tools to be kind. In both cases, we as parents, professionals, and typically-developing peers need to educate others and ourselves.
2. Empower. Once staff and students are trained to recognize bullying behavior or disability harassment, they need to be empowered to act.  Give them the freedom, the infrastructure, and the tools to respond effectively.
3. Advocate. Students with autism need to self-advocate to get their needs met and their wants known. Their classmates and educators need to advocate for them when they see them in distress.
4. Believe. Believe in the abilities and the spirit of your student or friend with autism!  Believe you can make a difference in his or her life!
5. UPstander. Bystanders stand by when they see bullying or disability harassment.  We hope you stand UP!
6. Friend. One of the saddest statistics pervading the autism community is how few friends youth with autism believe they have. While establishing a friendship may be intimidating to typically-developing students, know this: Your classmate with autism requires surprisingly little of you; a high-five, a protective stance, an encouraging text message or note, or a once-a-month outing could be transformative.
7. Unity. I know it sounds a little High School Musical, but we're all in this together. True story.
8. Diversity. We're all different from one another. Difference isn't deficiency; it's diversity. Celebrate it!
9. Ability. Focus on ability and not DISability. It requires a change of perspective and will make everyone feel more positive.
10. Accept. This is is my most important word. Accept what you cannot change, such as differently-wired brains and all that comes along with them. Teach and support those with autism spectrum disorder; don't try to make them something/someone they aren't.

Forward this to your friends, teachers, and colleagues!  Maybe focus on a word a week for the fall as community-building exercises.  And let us know how it's going!

It All Matters

As educators and administrators start to get in the new school year zone, they'll go over the Individualized Education Programs (IEPs) of the students in their classes to get an understanding of some of the more specialized needs.  (Or at least they should be doing that!)  A good IEP is one that focuses on achievements and strengths while making challenging goals with supportive services to keep the student moving forward.  It would be sad and certainly not helpful if the narratives were filled with little more than disparaging notes and records of failures.  The IEP should give the accepting teacher a good base of ideas to keep the student learning and growing.

Assuming teachers are getting such positive documents, they should start in September with every intention of celebrating achievements.  If we subscribe to the belief that success begets success, and we know that there is some attrition of academic skills over the summer, then we have to be ready to set learners up for success immediately in that first week of school.  What accomplishments did they have over the summer?  What wonderful skills are they demonstrating those first days?

As the parent of two children with autism spectrum disorders (ASDs), I've learned that what seem like little things matter big time.  When my mommy friends were celebrating their typically-developing children's milestones, I began scratching my head while I observed my toddler with a differently-wired brain.  Once we had a diagnosis, I understood that we were on a different trajectory, but it would still sting to hear some of those early reports of my child's same-aged peers self-dressing or -feeding.  I was still looking in my child for the same achievements my friends were noticing in theirs.

What I wasn't trained to notice at the time was how my son was recognizing patterns and generalizing those to other aspects of his life.  For example, when walked to the refrigerator and took the number 9 magnet, turned it on its head, and said "six".  Or when he jumped out from behind the kitchen wall and said, "Boo!" to me, just like his favorite character Sulley from Monsters, Inc.

photo by Jan H. Andersen

But last month, when his 13-year-old self began singing in the shower, I knew what an achievement that was.  It meant that ...

• he was imitating.  His younger sister is quite a nightingale, and almost always exercises her pipes while showering.
• he enjoys music.  His Early Childhood and music teachers during his early years at school were far more likely to find him under the desk with his hands over this ears than participating in class.
• he can speak.  Many people with autism struggle greatly to communicate with spoken language.

I share this because ...

• as parents, we need to celebrate achievements like this.  It all matters.
• as educators, we need to continually point out students' successes to themselves, their parents, and their peers.
• as peers, we need to recognize that while our friends with autism might not be doing the same stuff we are, they're doing amazing things and usually have to work WAY harder at achieving those things than we do.

What victories are you and your student celebrating?

We need your support this Friday!

It's not so much that we as co-founders of Good Friend need you (though obviously, we do, and are so thankful for you!).  It's more that we need you to help us recognize some wonderful people.

• We need you to cheer on high school student and Master of Ceremonies Ellie Trewyn, who's the voice of Choosing To Be a GFF and is an aspiring broadcast professional.  
• We need you to congratulate Good Friend in Education Award winner Alexandra Krysiak, who, perhaps more because of than in spite of her own challenges, is a wise and powerful advocate for her elementary school classmates with autism. 
• We need you to put your hands up for Shelly Dretzka, Good Friend's Top Fundraiser for FY 2011/12, who rallied a dozen teams to participate in our 4th annual Hoa Aloha Autism Awareness Bowling Event and ultimately was responsible for bringing $2,862 in to support autism awareness, acceptance, and empathy.

And we want to have a blast while we're doing all that!  So we'll have a few black jack and roulette tables, just for fun, and at the raffle you could win some lovely home furnishings, including hand-tied fleece blankets!

And check out these fine silent auction items!

Handmade cuff bracelet and earrings donated by
Potawatomi Bingo Casino, valued at $200.

Handblown glass bowl donated by artist Craig Derby,
valued at $200.

Priceless handmade puzzle piece quilt donated by Cari Short.

Matted and framed limited edition Terry Doughty print,
"Phantoms of the Tamarack", donated by Jeannette &
Les Schamens and valued at $300.

Please say you'll come to Steinhafels in Waukesha, Wis., on Friday, Aug. 3, at 7 p.m.  Just let Denise know you're coming (262-391-1369).  We always welcome your online donation, too, in case you wish to give a gift in honor of Good Friend's 5th birthday without attending the festivities.  Thanks in advance!

Segregation and Self-Perception, Part 2

As parents, teachers and administrators, we all need to be mindful of the message we're sending to students.  In instances where students with special education needs are set apart, or segregated, from their typically-developing peers, we have to understand the perception of the students involved: Those with Individual Education Plans (IEPs) who are sent to an alternate placement should know it's for their benefit, or they might begin to feel inferior to their peers.  Those who see their peers with IEPs in separate classrooms should know those students are just as worthy of respect, compassion, and attention as they are.

We teach by example.  If a general educator consistently deflects the needs of a student with an IEP in her or his class to the support person (i.e., a educational assistant or a special education teacher), or groups the students with challenges together and separates them from the other students within the same classroom, social habits are likely to follow suit.  These students will become isolated from their peers on the playground, in the cafeteria, and on the bus.  They will not be included in a homogenous population.  Or worse, they could become targets of relational aggression.

Consider what happened with Jane Elliott's blue eyes/brown eyes exercise more than 40 years ago.  In the wake of the 1968 murder of Martin Luther King, Jr., and in an effort to get her 3rd grade students to understand the injustice of segregation and/or racial prejudice, she conducted a two-day psycho-social exercise.  The impact of this role play, and the one captured on film two years later, has resounded for decades.

On the first day, she convinced her class that the children with blue eyes, like herself, were superior.  The brown-eyed children were asked to wear identifying collars so they would be recognized from a distance as having brown eyes.  Before long, the students with brown eyes felt inferior socially and academically.

The second day, Ms. Elliott flipped the rules, confessing to the students that she'd lied the previous day about blue-eyed people being better than those with brown eyes.  The latter gave their collars to the former; and while the brown-eyed children were more merciful on day two than the blue-eyed children were to them on day one, it was still an awful day for everyone.  By the end, when Ms. Elliott told the students the truth, that they were all equal, the students despised the collars, the lesson, and prejudice altogether.

If this alteration in self- and peer-perception happens in a matter of hours, what do you suppose happens over months and years when we separate children with special education needs?  Of course, we have to provide the kind of support that will help our students to learn best; but can we provide it more seamlessly?  Can we design an environment that provides universal access to learning opportunities, without some of the barriers to those who process sensory input differently?  Can we start a club based on a student with ASD's passion that allows him to showcase his core competency -- even expertise?  Can we encourage educational assistants to act as social bridges, sharing practical tips to foster interaction between students with ASDs and their typically-developing peers?

I know we can.

How will you improve the culture in your community to be more inclusive of students with ASD?

Segregation and Self-Perception, Part 1

There are many arguments why self-contained classrooms for students with special education needs are valuable and qualify as the least-restrictive environment (LRE) for educational placement.

• It is more cost-effective to deliver services to a population of students with similar specialized learning needs in a single class.
• Some general educators are not certified to teach special education, so students with IEPs cannot be served well in general ed classrooms.
• Students with special education needs can be more closely monitored for behavior and academic progress in a separate classroom.
• Some students with special education needs are incapable of functioning in a mainstreamed classroom.

There are more reasons why inclusive education is valuable, which drove the discussion of LRE in the Individuals with Disabilities Education Act (IDEA).  One of the reasons -- self-perception -- reaches the core of my being.  As a high school student, my brother and I attended the same public school.  The achievement-oriented culture of the school was focused on two things: college and sports.  If you were the student who was college-bound with good grades and/or played well on one (or more) of the school's sports teams, you were looked upon favorably.  If not, you clearly did not enjoy the same staff-offered perqs (such as benefit of the doubt, homework forgiveness, basic respect, etc.).

I was a nerd.  I answered the teachers' questions in class, went to the summer camps devoted to intellectual or career pursuits, and was the school board student representative.  My not-much-younger brother was seemingly the opposite.  He wore provocatively-messaged t-shirts, used the breaks in the day to head outside to smoke a cigarette (which you could do legally back in those days), and ended up in a high-risk program to at least get him to graduate with a GED.

There was one teacher in particular who seemed to thrive on berating my brother.  He would stand at the end of the hallway and hurl insults with a half-cocked grin of satisfaction on his face directed at the college-bound and athletically-gifted students who passed him.  He was encouraging them to join in the ridicule not only by his initiation, but by his body language's approval.  This was a core curriculum teacher whom I otherwise considered rather effective in the classroom.  I knew it was wrong then, but lacked the practical wisdom (and frankly, authority) to counteract the bullying behavior.

While my brother's teachers made accommodations in the classroom, and special educators assisted as needed, he was particularly uncomfortable about his placement in a study hall of sorts for students with special education needs.  There were students at all grade levels and with all manner of disabilities in this classroom, and the teacher went amongst them to offer assistance with and re-teaching on curricular assignments.  My brother said he used the time to sleep, because he figured that's all his teachers expected of him anyway.

He had begun to believe the propaganda a few insensitive teachers were publishing about himself -- he would never amount to anything; he wasn't smart enough to do the classwork; he'd be lucky to get a diploma at all.  What a sad way to glimpse your future when you're only 16.

I asked my brother if he ever thought about what might have happened had his teachers established higher expectations and held him accountable for class work.  He said he didn't think about it from that perspective much; but he still has nightmares about the administration calling him back to tell him he didn't really finish high school.

I know it's controversial to call placement in a self-contained classroom segregation of students with special education needs, but if the argument is anything but "the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily", then the child is being set apart from his or her typically-developing peers in a manner out of compliance with IDEA.  And that state of being set apart sends a message, albeit unintentionally, that students with special education needs don't belong with their typically-developing peers.

Watch for Part 2 next week, when we'll discuss this idea in connection with Jane Elliott's blue eyes/brown eyes classroom exercise.