'Of course you should understand me!'

If you're a long-time reader of this blog, you know that much of what we (Good Friend, Inc. co-founders Chelsea Budde and Denise Schamens) write about comes from personal experience.  Whether it's something we've encountered while "in the field" or in our own homes, raising children with differently-wired brains, it's often illustrative of a greater truth or broader concept.

For example, when I took my son back to his diagnosing neuropsychologist for a re-evaluation, she reminded me the importance of teaching everything -- using opportunities to describe emotions, perspectives.  So along those lines, when I or my husband does something "above and beyond" the call of duty, so to speak (Is there really any such thing?), for our son, we ask him, "Why would I do that?"  And he responds, "Because you love me."  It can be hard for him to remember that we love him when we're pushing him outside his comfort zone, so we like to rehearse this concept in moments of satisfied calm.

Recently, I unraveled a mystery about my boy before he did.  He was somewhat surprised by this.  I asked, "How do you think I knew that?"  Observing that he was unable to come up with an answer, I replied, "Because I understand you.  I've taken the time to listen and think about who you are, so I understand."

Quickly, he blurted out, from a parted wry smile, wagging his head with his hand on his hip, "Of course you should understand me!"  And while I laughed at first at his teenage 'tude, I realized how profoundly true that is.  And my heart broke a little for all the children whose caregivers don't understand them.  (To be fair, I don't always understand everything my son does or thinks or feels, because I'm not inside his body.  But I play detective when I don't understand to come up with a plausible explanation.)

In a HuffPost Entertainment blog article published last week by Caroline Presno, she quotes Dancing with the Stars' Tony Dovolani: "Anybody that has an autistic child or has one in their family, should take some time to get to know them because their life will be enriched by it."

And while our enrichment as people without autism shouldn't be the motivator to understand our loved ones and students with autism, it is a marvelous benefit.  Going back to The Figureheads' "We ALL Fit" lyrics -- "so much beauty unexpected."

We should take the time to understand our students and loved ones with autism because they deserve to be understood.  They are no less worthy of a comfortable environment, accessible education, social relationships, recreational opportunities, freedom of communication, quality mental and physical healthcare, and assertion of self-will than we are.

Communities have to build themselves on that inclusive foundation.  It will drive policies regarding human services and direct funding -- because we know people with autism are worthy.  

Good Friend, Inc., is just one small organization doing its part to reach children as young as 5 with that awareness-acceptance-empathy message.  Thanks for doing your part, too.

"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!

"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.

"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!

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!

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!

Autism Awareness Activities in Elementary Schools

Last year, I was so impressed by the efforts of the Swanson Elementary community in Brookfield, Wis.  I was certain they were an anomaly in the education universe.  But I am glad to report I am WRONG!  There are other metro Milwaukee schools (and you likely know of one in your area) capitalizing on the opportunities Autism Awareness Month affords for the building of a culture of acceptance.

What's unique about Cushing Elementary in Delafield, Wis., is that the staff (namely, Occupational Therapist Teresa Wozniak) has an annual plan to address peer awareness throughout the school year.  To complement her work, which includes reading books and answering questions about students with diverse abilities, autism parents Mary Day and Karen Cain started planning additional activities for April way back in the fall.  Here's what they did this month:

• Displayed original posters throughout the school with helpful tips about autism, and draped a banner across the school's entrance.
• Decorated an informative bulletin board in the foyer showcasing famous people who have autism.
• Asked students to write letters of support to their classmates with autism to demonstrate how much they care.
• Organized a staff luncheon of appreciation.
• Had student leaders make blue puzzle piece pins for all school community members to wear. 
• Recommended all students wear blue on April 17th, following two days of Good Friend Peer Sensitivity Workshops by grade level.

This multi-modal, wrap-around model of autism awareness fosters acceptance and empathy, and moves autism from the shadows of understanding the the positive light of social relatedness.  Teachers at Cushing incorporated this concept into their curriculum, leading mini-lessons on the topic which could be tied back to learning standards.

Karen said, "I can't tell you how many times, while I have been at school, I have been stopped by staff to tell me how happy they are and love what we have done."  We were glad to be a part of it!  And we could tell by the insight of the peers and the thoughtfulness of their questions that they were learning invaluable social-emotional lessons.

What did your school do this month to promote autism acceptance?  What will you plan to do for the 2013-'14 school year?

Sowing the seeds of self-determination

There's this word in the Special Education universe that's often misunderstood until, as a parent, you and your child are in the thick of it: Transition.  It's not the lowercase transition, which occurs so many times in the life of a student with special needs.  There's the transition from an Individual Family Service Plan (IFSP) that preschoolers have from birth to age 3, if they qualify, to the Individualized Education Program (IEP) that the local school district drafts.  Then the transition from Early Childhood classes to Kindergarten.  Then from elementary school to middle school.

And somewhere along that middle school time in the state of Wisconsin, or in high school according to federal law, families start to hear about this Transition.  Transition is the period of time and series of events required to prepare students with special education needs for life after secondary education.  While students with IEPs may graduate with their peers, they may also opt to stay in the public school system, receiving related services until they're 21 years old.  This Transition planning is multi-faceted and critically important.  Perhaps most importantly, it's a time when students are required to engage actively in the process and select desired outcomes.

The Wisconsin Department of Public Instruction has a series of four publications intended to assist Transition teams with various aspects of the process.  There is one that speaks to the steps families and schools can take when students are yet in elementary school: Opening Doors to Self-Determination Skills.  Here's the list for students (found on p. 7 of the booklet):

• Know your strengths (what you are good at).
• Know your areas of need (where you need help).
• Know your interests (what you like).
• Know what kind of support you need to be successful.
• Learn how to make choices.
• Be a part of Individualized Education Plan (IEP) meetings, at first by introducing IEP members and describing yourself (interests, likes, dislikes).
• Share a list of accommodations you need with general education teachers.
• Participate in clubs, sports, and other activities kids your age are in.
• Begin to understand your own disability and what it means to your learning.
• Choose a time and place to study and do homework at home each day.
• Help out with family chores (making dinner, shopping, cleaning your room).
• Volunteer and help out in your local community.
• Enjoy who you are! Learn about yourself. You are more than your disability.

How can students with autism be self-aware if we don't start having these conversations with them early?  The better they are at being familiar with themselves, the better they will be able to determine their own needs.  Knowing their strengths and their supports is part of self-determination.  And being able to share those things with peers, teachers, and eventually employers, will make that Transition more smooth.


So as a parent and professional, I encourage you as parents and teachers to be Transition-minded with your students when they are in second grade.  And by the time your student with autism is in middle school, they will be far more likely to participate meaningfully in this mandated process.

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?

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.

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?

Different ≠ Deficient

Rodin's "The Thinker" taken at the Rodin museum in Paris. Copyright © 2007-2008 James H. Linder

The concrete thinker in every human wants to quantify things.  How many?  How much?  What's the difference between them?  And it's that last question that tends to get us into a pickle.  We want to assign a number to demonstrate the difference -- even when it's not a quantitative difference.  And even if it's a qualitative difference, we concrete thinkers want to have a handle on the disparity.

When it comes to testing and analysis, as in the realm of qualifying for special education services, we have to be specific.  What is the age equivalence for the expressive/receptive language ability?  What is the difference between the child's actual age and the developmental communication ability?  If the standard deviation is at least 1.75 below, then (in the State of Wisconsin) the student may qualify for speech-language services through an IEP.  If not, well ...

Collecting data and searching for patterns is an excellent way to track progress (or lack thereof).  We write quantifiable goals in IEPs so we can tell whether our means for achieving our goal are successful and whether or not we've satisfied the goal.

So I suppose I shouldn't be so ruffled when people look at children with autism and try to quantify their differences.  In some cases, that's warranted for service entitlement.  But as caretakers, we have to stop looking at different as being equal to deficient.  For if different < normal, then it's okay to treat different < average.  When we follow that math equation, different = deficient.  We certainly can't say different = average (although we are all "different" by definition), because then we run the risk of eliminating supports that different requires.  Have I confused you thoroughly yet?

The point is this.  Yes, the autistic brain is different than the neuro-typical (NT) brain.  Its differences lead to altered ways of experiencing the world.  And in order for that experience to be accepted into society at large, both sides of the equation need to make accommodations.  But making accommodations isn't an intrinsically bad thing.  We all make accommodations ourselves and for our loved ones (sharing workloads by managing strengths, using calendars to keep track of appointments, etc.).

If we truly want individuals with autism to be accepted by their (NT) peers, we need to stop measuring those differences and displaying the disparity.  We need to be less concerned about the appearance of difference in inclusive settings and downgrade the importance of blending with NT peers.  Make the accommodations for the student with different learning abilities and explain their necessity to peers in teachable moments as appropriate.  Transparency is a value increasingly embraced in our culture.  If we are hiding difference, we are harboring the sentiment that difference is bad.  And when we allow that sentiment to cloud our thinking, then we perpetuate the harmful untruth that people with autism are lesser than their NT peers.

Think about it.

Be Inspired!

From Dictionary.com

in·spire

  

1.

to fill with an animating, quickening, or exalting influence: His courage inspired his followers.

2.

to produce or arouse (a feeling, thought, etc.): to inspire confidence in others.

3.

to fill or affect with a specified feeling, thought, etc.: to inspire a person with distrust.

4.

to influence or impel: Competition inspired her to greater efforts.

5.

to animate, as an influence, feeling, thought, or the like, does: They were inspired by a belief in a better future.

What inspires you?  You might answer my question with the question, "To do what?" To get out of bed! To go to work! To do your best at school! To make a new friend!  Inspiration goes beyond motivation.  We might be motivated to get out of bed because we have to ready ourselves for an appointment or obligation.  Our motivation to go to work may come from the promised paycheck.  But inspiration is something else -- something more.  When you look at the etymology of inspire, you get a sense of a breathing in of spirit.  So the life-giving air in your lungs to do well at school might come from an enlightened teacher.  And the breezy spirit of friendship might have blown in your next BFF.

I can tell you unequivocally that I am inspired by my children with autism to do my job tirelessly and with fresh air daily.  I wonder how many neuro-typical people realize how hard my children with differently-wired brains work to do so many things that come effortlessly to them: use and interpret body language, tone of voice, and comedic timing; initiate and maintain social relationships; process and respond appropriately to verbal language.  I could look at them and despair; but instead, I look at them and breathe deeply.

Look at your person with autism today and be inspired to do better -- for him or her and for yourself.  (And if you don't have a person with autism, you won't have to look too hard.  If you know 100 people, you likely are already connected.)

SPECIAL ALERT for Autism Society Chapters

We are tickled by the overwhelmingly positive response to the Autism Society of Ohio, Greater Akron office campaign to bring our autism peer education DVDs to schools.  (Here's the Facebook thread.)  Select Autism Society chapters across the country received an email earlier this month with a special offer for our 2-disc DVD set, which includes How Can I Be a Good Friend to Someone with Autism? (2007), intended for grades K-5, and the award-winning Choosing To Be a GFF (2011), for grades 6-8.

If your chapter was NOT on our email list, please have them get in touch with Chelsea, who will gladly send the details so you can get this campaign ready for schools in your area in recognition of National Autism Awareness Month!

Inclusion: It Isn't Just for Families Anymore

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

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

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

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

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

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

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

The Virtue of Life-long Learning

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

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

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

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