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.

THINK: 50 Cent and Autism

If the R-word campaign and Judy Endow's The Power of Words have taught us anything, it's that words matter.  What comes out of our mouths and/or off of our typing fingertips has the power to hurt or heal, to build up or burn down.  While Good Friend has spent the last five years educating some 17,000 students and adults about the importance of speaking positively about autism and those who experience life through its lens, there are those who continue to remain ignorant about this neurobiological developmental disorder and make insensitive comments.

Such comments sting in a far more reactive way when they're inflicted by celebrities.  For better or for worse, our society is acutely aware of media moguls in various industries, including music, film, and sports.  Rapper 50 Cent, no stranger to the spotlight, got particularly ugly with a threatening Twitter follower last week. According to a Huffington Post article, his response was "yeah just saw your picture fool you look autistic." And, heaping burning coals on his own head, tweeted, "I dont want no special ed kids on my time line follow some body else".

This brought to mind a favorite mantra.

Many 50 Cent fans insisted he was only trying to be funny.  It was the furthest thing from comical or entertaining.  If great power (or influence) comes with great responsibility, then we have to THINK before we speak.  If it isn't True, Helpful, Inspiring, Necessary, and/or Kind, then we should, as I often tell my son when he gets into his self-regulatory scripted talk at inappropriate times, keep it in our heads.

While 50 Cent took his nasty tweets down at the emphatic request of autism activist and mother Holly Robinson Peete, it took the public outcry of the autism and special needs community, plus those who support common decency, to get him to offer an apology.  Thousands of pictures with hashtag #thisiswhatautismlookslike flooded Twitterverse, apparently prompting his Sunday morning olive branch extension.

Let's hope we all THINK before we speak.  Because, for those of us who have reliable spoken language, just because we can speak, doesn't mean we should.