'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.

Reasonable Accommodations

My family and I are on vacation.  We are visiting theme parks and family, splitting up when we need to for the well-being of our kiddos on the spectrum.  My 15-year-old son in particular has a number of "rules" he's self-imposed to protect against sensory assaults and general violations.  One is that he cannot get his shirt wet.

When you're in Florida in the summer, you WANT to get wet.  (It's 100 shades of hot down here.)  So as much as my son wanted to get wet in a theme park on a ride with water features, he could not tolerate sacrificing the dryness of his shirt for the cooler sensation.  In anticipation of boarding the ride's transport, he removed his shirt.  The attendant informed him he'd have to put it on for the ride.  I flashed our accommodation pass and told the attendant that my son had autism and could not get his shirt wet for sensory reasons.  He insisted that if his shirt were off, he could not be in the park.

We graciously bowed out of the line after waiting for a stifling 35 minutes, watching the rest of our party enjoy the ride.  And I tweeted my discontent, believing that this inflexibility was denying an Americans with Disabilities Act (ADA) promised "reasonable accommodation".  The response was, "we only allow this [men's shirts off] in the Water Park to ensure comfort for all guests". Sure -- all guests except those with autism and sensory issues.

Here's how this applies to you: Be flexible. I am not sure there would have been a person in that ride transport who would have been uncomfortable with a shirtless teen boy -- certainly not if we were willing to communicate the reason for the (potentially offensive) upper body nudity. But the park had decided that it's better to deny access than to be flexible for someone with a disability. Don't get me wrong; the park policy to be accommodating for people with mobility impairments and neurological differences is in place when it comes to boarding rides. It just doesn't extend to attire regulations.


So when it comes to the rules of your classroom and the expectations of your school campus, understand that the spirit of the ADA should allow for reasonable accommodations. Maybe it's realizing that your incoming kindergartener is going to need to hang onto his favorite comfort item for transitions. Perhaps it's allowing your middle schooler to choose a different Phy Ed uniform than the routinely issued one. It could even be that your student needs to demonstrate her competence in an alternate assessment. These are all reasonable accommodations. They are not safety infractions or otherwise illegal.


And if another student or faculty member challenges the accommodation, remind him or her that, "Fair isn't everybody getting the same thing. Fair is everybody getting what they need in order to be successful."

Talking to Children about Talking

A couple weeks ago, I was with my 12-year-old daughter and 15-year-old son at a public park pool in our community.  It's generally a great place to connect with friends from school.  But not all children are friendly -- or at least they say some pretty unfriendly things.  One group of 14ish-year-olds made my son particularly upset when he tried to interact with them.  Seeing his anguish, a couple of them initiated personal apologies to him on their own.  And while that social bravery was impressive, it was like this illustration:

So while I'm thinking about it, I'd love to share with you parents and summer day camp directors and staff members a top five talking points list about encouraging healthy social interaction in the community -- especially because around 15% of the children they encounter will have some neurological difference, or invisible disability.

1. We are all different.  Some differences you can see, like hair color or wearing glasses.  Others you can't, because they're based in the brain.  Brain-based differences cause some children to perceive parts of their world ways most other people do not.  There's nothing "wrong" with their perception; it's just different.
2. While we are all different, we all want to belong.  Some kids are better at expressing their desire to be friends than others.  No matter what, no child wants to be told to "Go away" or hear "Leave me alone" when they're trying to make a social connection.  If you're already hanging out with a group of friends, consider inviting the child who approached you to hang out, too -- even if it's just for a few minutes.
3. If the child who approached you to play says something that makes you uncomfortable, tell him or her in a matter-of-fact but helpful way.  Better yet, give them a more appropriate thing to say or question to ask.  Often times, children with autism spectrum disorder (ASD) have fewer social tools in their tool box, or may use them in a clumsy way.  They're trying; be respectful of their attempts, but also aware of your own boundaries.
4. Really consider how you would want to be treated if you were brought into a place where you didn't know anybody.  Some of your friends might think it's funny to mess with someone with a brain-based difference.  They might not think right away about how that child is understanding others' intentions. This might just seem playful to you or to them, but it's really called disability harassment; and it's against the law.
5. If you see or hear someone being treated in an unkind way, please bring it to the attention of a nearby responsible adult.  If that's at the pool, it's a lifeguard.  If it's at camp, it's a counselor.  Everyone has a right to feel safe and respected in our community.  At all times.  No matter what.

I am sure we all want our children to be good citizens.  I know that parents aren't always aware of how their children behave in a loosely-supervised social groups.  Remember that social emotional instruction is continuous and just as important this summer as finding a good book to read.

Teachers Who Make a Difference

It's the last week of school in our district, and my own children have been through tremendous transitions this year.  In the hands of less capable educators, this week might have felt very different for us.  I have had school years as a mom -- and I'm sure you teachers and students have had them, too -- when you're just grateful the year is OVER.  Scrounging for a scrap of fabulous with which to redeem the missed opportunities can be emotionally exhausting.  But this year, I could fill a book with victorious vignettes.

I don't know how I didn't hear of it sooner, but the responsive poem by author-advocate Taylor Mali regarding "What Teachers Make" struck a chord deep in my heart when one of my daughter's classmates shared excerpts from it at their year-end celebration this week.  And as I wrote out individually the twenty (yes, when you have two kids with special needs, the numbers add up!) notes for teacher gifts, there was one in particular that got the waterworks going.

To understand why, I have to back up the timeline.  My son started high school this year, and at the new parent orientation the preceding winter, I was expecting to understand how my boy would fit into the school culture.  His autism and mental health challenges can be obstacles to social acceptance, but when the social emotional conditions are favorable in a school community, they generally are not immoveable barriers.  After that orientation, I left feeling as if students like my boy were either an afterthought or no consideration at all in the school culture.  There was plenty talk of AP courses and athletics, but very little about different abilities.  There was talk about embracing racial and socio-economic diversity, but none about neuro-diversity.

Contacts with key people at the school and district were promising, but everyone's busy.  And this isn't their mission.  But it is mine, as a parent-professional.  So I got busy.

This wasn't a year of jumping into the social emotional current with both feet.  It was a year of studying the river and dipping in toes.  It was a year of learning the landscape and befriending the natives.  And we found a tribe for my boy.

So the thank you note that I wrote to this teacher, as the advisor of my son's newfound tribe, was the one that made me cry.  Because, you see -- he helped create a community of acceptance for this one kid.  This one student who I thought might be forgotten.  Left out.  Not included.  But he was accepted and included.  And it makes a difference.  Forever.

I know the good administrators and educators like this one never stop thinking and planning.  So for all of you difference-makers out there, really consider this summer how you can be more inclusive of students with neurologically diverse experiences.  Because there are a lot more moms like me who love nothing more than a good end-of-the-school-year cry.

Talking about an ASD Diagnosis

Following a recent Good Friend Peer Sensitivity Workshop, an observer remarked how she had seen similar presentations about autism, but the presenter never actually used the word "autism".  I thought that was much like talking about reproduction without mentioning the sex organs: not very helpful, and one leaves with more questions than useful information.  I believe parents of children with autism spectrum disorder (ASD) should approach "the talk" about autism in much the same way they would "the talk" about those reproductive and sexuality issues.  You don't divulge every detail at once, but continually reveal and unpack details as they become relevant.

Though this quotation is often attributed to Albert Einstein,
there is no evidence that's accurate. So let this say
what it will to you in light of this discussion topic.

For example, a 4-year-old with autism might be receiving some sort of therapy as an intervention for related symptoms.  It's okay to let your child know that the lady he sees at school helps him with making words.  A 10-year-old on the spectrum might be struggling with the dance unit in Phy Ed.  It's a great idea to explain that sometimes gross motor coordination (moving big muscle groups) is difficult for her, but she's amazing at memorizing details -- and both are tied to the way her brain is wired.

Because by the time a 13-year-old with ASD is contemplating suicide because he doesn't understand why he's so different and/or being bullied by his peers, you've missed some crucial opportunities to foster self-awareness.

Of course, not all adolescents with ASD will despair of their lives. In fact, the majority will not. However, a study published by Penn State College of Medicine's Angela Gorman, Assistant Professor of Child Psychiatry, and researchers, as reported by Science Daily (March 13, 2013), sets off some important warnings:

The researchers found that the percentage of children with autism rated by their parents as sometimes to very often contemplating or attempting suicide was 28 times greater than that of typical children, though three times less than that of depressed non-autistic children. The four demographic variables [Black or Hispanic, 10 years old or older, socioeconomic status and male] were significant risk factors, as well. 

"That was probably the most important piece of the study," said Gorman. "If you fell into any of those categories and were rated to be autistic by a parent, the more categories you were a part of increased your chances for experiencing suicidal ideation or attempts."

The study also notes that children with ASD who were teased or bullied were more likely to consider or attempt suicide.  An essay in this month's Good Housekeeping magazine by Jackie Mercurio is a painful vignette of that reality.

If you've been following any of the #IMFAR2014 chatter, you might have gleaned that Marsha Mailick, director of the Waisman Center (Madison, Wis.), spoke in her keynote address at the International Society for Autism Research Conference about parent positivity as a powerful determinant of quality of life for adults with ASD, per her research.

What does all this mean for you as a parent?  In my opinion, your child has the right to know about his or her autism.  But I encourage you to keep some things in mind when you decide to have "the talk":

• Your child will take cues about how to feel about autism from you.  If you're not okay with it, don't expect him/her to be, either.
• Keep your side of the conversation hopeful, positive, and accepting.  As you explain a struggle connected to autism, be sure to remind about a strength, too.
• Validate your child's feelings.  Unless you have autism, too, you don't really know what it's like to live with autism in your body.  Don't minimize what your child is experiencing, whether physically or emotionally.  
• This is an ongoing conversation.  Look for opportunities to add depth, connection, and meaning to the foundation you lay.  Maybe read Jennifer Elder's Different Like Me or listen to The Figureheads' "We ALL Fit" or visit Carly Fleischmann's Café.
• You have LOTS to learn from your child with autism, too!  Often times, the one who needs perspective-taking is the one who does NOT have autism.  We each assume others' sensory experiences and social preferences are similar to our own.  That can be dangerous.
• Look for ways to help your child find his or her "tribe".  It's about the coolest thing ever to observe the interactions between people of similar neurology and realize they have a profound culture all their own.  Encouraging inclusion doesn't mean that you remove your child's autistic manifestations to "fit into" a world created by the majority neurology.  It means you recognize those manifestations of autism and consider them across environments, encouraging systemic changes that will foster meaningful participation.

I recognize that telling your child about his or her autism is your right as a parent.  Please -- consider your child's right to self-awareness and the importance of self-advocacy as you decide what information to sequester.

And let's learn from each other!  For those with autism, do you remember being specifically told you had been diagnosed with ASD?  For parents, do you have some encouraging remarks about your experience with your child on the spectrum learning about his/her neurology?  For educators and administrators, how have you seen self-awareness benefit your students with ASD?

It's coming! The release of "We ALL Fit" is less than four weeks away!

We at Good Friend, Inc., could not be more excited about the premiere of our latest autism peer sensitivity film, "We ALL Fit"!  Never has one of our products been the culmination of so much research, collaboration, and experience.  With careful consideration of the learning styles of intermediate childhood (ages 6-10), we put together a multimedia presentation that would meet learners where they're at.  With a Community Conversation about Meaningful Inclusion in Elementary School, we covered social emotional topics teachers and parents believed important.  With a research study illustrating what students still needed to know after our services were delivered, we loaded this film with tools.  We field tested and tweaked and tested again.  We gathered feedback from students and teachers and researchers.  And this is it.

On Wednesday, May 28, from 6:30-7:30 p.m., nearly 250 people will assemble at the Marcus Majestic Theatre in Brookfield, Wis., to see "We ALL Fit" on the big screen.  We are currently registering cast and crew and their guests, but will open the event up to the general public in just six days.  Registration will be required to procure a ticket, and a ticket is required for admission.  There is no fee for the ticket.  (Event sponsors such as AutoZone are offsetting costs.  Sponsor opportunities are still available.  Email chelsea@goodfriendinc.com for more info.)  Since the target audience for the film are students in K-5th grade, the event is meant to be family-friendly.  Our cast and crew are encouraged to wear their finest evening wear to walk the red carpet.  So if you want to go all out, too, feel free!

Here's what inclusion expert Paula Kluth, Ph.D., has to say about "We ALL Fit", which is being considered by film festivals in Toronto and Chicago:

"Another useful classroom resource from Good Friend, Inc.! This short video not only offers ideas for building community in the classroom, but provides opportunities for all learners to build communication, collaboration, teaching, and advocacy skills. With each viewing, every member of the classroom can learn something new about getting and giving support, about friendship, and about true inclusion."

How better to mark Mental Health Awareness Month than with a healthy dose of "We ALL Fit"?!  Check out the music video this week, Children's Mental Health Awareness Week, which now boasts nearly 16K views and more than 300 Likes.  Use it to start a conversation in your class or family.  And keep watching the blog all month for more information!

Kids say the loveliest things!

Like many other states, Wisconsin has had a tough winter.  In fact, it interfered with preparation for a recent student service at an elementary school.

Generally, we send a presentation kit to the host school ahead of our visit so staff and students can prepare to receive Good Friend's Awareness-Acceptance-Empathy® message.  Part of the kit for students in grades 2 through 5 participating in a Peer Sensitivity Workshop is a bundle of blank, colored notecards.  Teachers distribute these ahead of time and encourage students to write their questions about autism on the cards anonymously.  We collect the cards before students watch our video and review them so we can address any topics that haven't already been covered during the workshop in those last 15 minutes.

But on this day, the students had enjoyed a four-day weekend because of the bitter cold.  The staff didn't have time to distribute the cards and discuss their purpose.  To save time, I encouraged the students to write down any questions or comments they had for me during or immediately after the workshop, and then requested that the teacher return the cards to me so I could address any remaining questions.

There are few things as precious as a young child's handwriting, so you need to see these for yourself!

Kids don't just "get it", and they so appreciate when someone helps them understand!

Talking TO our friends with autism

When you're a "neurotypical" person orbiting the autism universe, you have to keep some things in mind:

• You are more alike than different.
• Don't force your way in to their atmosphere.
• Time your entry well.
• Be respectful of their planet.  (You sure do expect them to be of yours!)
• There's nothing to fear here, but plenty to learn.  Be a careful observer.
• Know when it's time to leave.
• Make a report, and ask your people with autism to provide feedback on your observations.
• Plan frequent return visits, modifying your interactions based on information gathered.

"Grand Universe" ©2005-2014 ANTIFAN-REAL

(Caution: Do not overthink this metaphor.  I am not suggesting that people with typical neurology are human and those with autism are not.  I'm simply expanding the "Wrong Planet" concept.  I mean no offense or disrespect.)

As Good Friend co-founder and fellow autism mom Denise Schamens and I have expanded our observations of and interactions with this autism spectrum cosmos, we have gained a better understanding and appreciation for the wonder and beauty it holds.  One of the most revealing discoveries we made was while attending an AUTCOM (Autism National Committee) Conference in Milwaukee in 2010.  For the first time, we beheld live the power of those who type to speak.  Attending a panel presentation on public policy advocacy, we were surprised that most of the presenters used some form of Augmentative and Alternative Communication.  Though sometimes conveyed with great effort, their thoughts were so sophisticated.  I marveled as I observed the outward autistic symptoms of unrelated vocalizations or dysregulated movement, often while the advocate continued typing insightful feedback to questions posed.  I was at once exhilarated and ashamed.

I was ashamed because I had made assumptions about intelligence outside that room that were more likely than not untrue and harmful.  I based my assumptions on observations: slow (or no) speech, uncontrolled body movements, facial affect.  I realized after this panel presentation both how little I understood and how much more I wanted to.  My "a-ha" moment encouraged me to dig deeper and presume competence.  Talking to people with autism instead of about them or to their support person extends dignity.  Our words matter -- and so do theirs.

Seeing Wretches & Jabberers deepened my appreciation for the plight of Tracy Thresher and Larry Bissonnette and other people with communication and movement differences.  And I was encouraged to infuse this appreciation into Good Friend's staff and student trainings, as well as in my parenting of my two neurologically-diverse children.

What does that look like?  It's encouraging self-awareness in your student with autism; because in order to advocate for him- or herself, your student with autism needs to understand what he or she needs.  It's expanding your concept of communication; because for young students who haven't found their voice, you owe it to them to discover their other "tells".  It's being patient while they're learning and not rushing their communication attempts, or otherwise disrespecting or discounting their input.

What "a-ha" moments can you share with readers to be encouraging?

Making an impact

Whether it's as an employee or a parent, do you ever wonder, "Am I really making an impact?  Is the effort I'm giving returning anything?"  I know when my children were younger and I was home with them, some of those days seemed awfully long.  I'd change my shirt for the third time that day because it smelled like the more unpleasant of baby scents and recall with longing the kudos of a client who appreciated a job well done.  I began to wonder what my life would be like once my children were in school full-time and I could return to "work".  Those thoughts came when I wasn't paying attention to what mattered, because I most certainly was making an impact -- in the lives of my family.

Fast-forward a dozen years and I'm seeing another kind of impact.  I'm seeing the impact a foundation has on a nonprofit organization like Good Friend, Inc., when it sends a grant check.  I wish the board directors from the Janice & Raymond Perry Community Fund, Pieper Electric, Inc./Ideal Mechanical, the Green Bay Packers Foundation, the Tracy Family Foundation, the Dorothy Inbusch Foundation, and Potawatomi's Miracle on Canal Street were in the room when I opened the envelopes from them with our grants over the last two months!  Each time, I was so grateful for their support, knowing what an impact we'll be able to make in the lives of students because of these gifts.

Here are some examples from recent weeks:
The mom of a 10-year-old boy with autism sent in this picture.

Her son explained, "After seeing that video, I kinda decided, well, that was pretty interesting. So I decided to make a slogan out of something. So I settled on ZOOBs. At first, it was all reds and greens, but then when I needed something for the dot on the exclamation point, the only thing I could find was two yellows. And then I realized that to make the point stronger, I should use every color in the sentence. So I made an underline out of all of the pieces, but then I decided to change some of the parts of the letters that could be swapped. The end result is the picture. I really hope you enjoyed it as I enjoyed the video."

Here's how the video impacted Nicole: "As a mother of a 10-year-old autistic boy who has often had difficulties with the puzzle piece image, I was pleasantly surprised to watch your video We ALL Fit. I really like that it uses the puzzle metaphor to reference ALL of us in the world, not just autistic people, and how important it is for us to connect. After I showed the video to my son, he said was inspired to make this creation after watching the video. Thank you for spreading the world that we are all connected and we do all fit."

A woman was driving three children -- her son and two young friends, one of whom has autism and likes talking about her brain-based difference.  The 5-year-old friend didn't really understand what she was talking about, and asked what autism was.  The 6-year-old son started quoting the second verse of "We ALL Fit" to explain. "Autism isn't something that you catch ..." As mom listened, she recognized the lyrics.  She says, "When I called him out on it, he laughed and asked to listen to the song. So we did."

Last fall, a mother had contacted me by email with a sad story about her daughter with autism being misunderstood and bullied at her school.  She was hopeful about this school year, since a new administrator and classroom teacher were happy to welcome us to conduct a Peer Sensitivity Workshop for all sections of her grade.  Following the third grade student training earlier this month, mom wrote, "I just wanted to share with you all that when I picked A up yesterday, she said that she had kids actually coming up to her and asking to play with her. This is the very first time she has ever experienced this. She said it made her so happy.  She spent the rest of the day on cloud nine and telling everyone she loved them."

Thank you for helping us make an impact!  Keep sharing your uplifting stories with us!

"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!

#GivingTuesday 2013

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

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

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

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

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

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

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

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

Pretending to be "normal"

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

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

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

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

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

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

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

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

UW-Whitewater Study of Good Friend Interventions

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

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

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

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

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

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

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

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

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

Autism: an explanation -- not an excuse

Even though Denise Schamens and I have been providing Peer Sensitivity Workshops through Good Friend for nearly six years now, we are still often met with resistance about explaining a classmate with autism spectrum disorder's (ASD) differences.  And we respect that.  But admittedly, it makes us a little sad, because we've seen the benefit talking about autism early conveys!  Yet when we learn the resistance is due to a misunderstanding about the intention of our services, we like to clear the air.

For example, a school's administration was encouraging parents of students with ASD to sign a consent form allowing us to contact them to discuss their child.  A spontaneous discussion began among the parents of students identified through their IEPs has having autism who had received the consent form.  While some families were all for the disclosure for the sake of creating positive interactions between students, one family in particular was discouraging others, suggesting that we would offer "excuses" for the "bad behavior" of students with autism.

Indeed, most children (and adults, for that matter) have some undesirable or bad behaviors, whether or not they have ASD.  And as caregivers, we have to strive to redirect or otherwise extinguish those behaviors, because we recognize them as chosen.  Yet in learners with autism, many of those "behaviors" are not chosen at all.  They are a product or a side effect of the differently-wired brain.  In other words, when similar undesirable behaviors are seen in a neuro-typical 5-year-old and an 8-year-old with ASD, we have to distinguish between the meaning of the behaviors and act (or better yet, preempt) accordingly.

When students with ASD have a functional behavior assessment, we caregivers have a head start in our ability to understand and explain unexpected behaviors.  Because autism is an "invisible disability", a neuro-typical student is not likely to associate a peer's unexpected behavior with a differently-wired brain.  But once we provide an explanation about autism and the diverse way that student experiences the world around him, the other students will no longer be mystified about the behavior.

It's not to say that an unsafe behavior like hitting would become acceptable.  Certainly, regardless of the communicative intent of the behavior, unsafe actions have no place in a classroom.  But explaining to the other students who've found better ways to cope with their frustrations or anxieties that there's a whole team of support people (educators, therapists, etc.) working together to teach the student with autism other coping strategies goes a long way.  Typically-developing peers could go from being hesitant or even fearful to being cooperative and helpful.

What have you learned about autism through the behavior of your person with ASD?

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?

From Barriers to Bridges

Earlier this month, I fawned over the friendship between Andrew Jenks and Chad, a young adult with autism on MTV's "World of Jenks".  The symbol that so impacted me was the bridge they crossed together at an amusement park.  Jenks was both the catalyzer and supporter for Chad's successful crossing.

Did you see the bridge they crossed last week?  They were at a park of sorts where Chad reported he likes to go walk and think alongside a brook.  He likes to see the crayfish and smell the country air and listen to the calming water as he paces.  (Many people with autism, including my son, report they think better when they are moving -- something about that kinetic energy.)  While Chad wasn't afraid of the low, sturdy bridge he and Andrew crossed together, he was trying to wrap his head around this transition he's making from going to school to graduating.  And Andrew was with him to experience that thought process; to encourage him as he crossed that bridge.

And I want to focus on that critical support person role for this week.  Let's back up to the bridge in the first episode.  What if Andrew said, "You're afraid of heights?  Well then never mind.  We'll go your way." While that would have been respectful of Chad's feelings, it would have put up a barrier to his joyful experience.

In the second week, when Chad was going to his senior prom with his girlfriend, his intention was to experience his first kiss with his Amanda.  He was crossing a metaphorical bridge of sorts -- demonstrating his desire to cross from a platonic relationship to a romantic one.  What if Andrew hadn't given him that pep talk in the limo and offered that cologne?  Those steps made the bridge less threatening.  Jenks could have put up a barrier ("You're not ready for that kind of relationship"), but that would have been a barrier to that milestone moment for both Chad and his girlfriend at the prom.

If you're supporting someone with autism, perhaps as an educational assistant (maybe they call you a paraprofessional or teacher's aide), I'd like to ask you to be reflective of your interactions with your students on the spectrum for a moment.  Are you a bridge or a barrier to social experiences in the classroom and beyond?

Before your crinkle your nose in defense, know that I understand how complicated the nature of your role is.  I have a great deal of respect for your job.  You walk this tightrope between fostering independence and preventing learned helplessness.  You are not the special education teacher, but you're the one in the trenches (er, classroom), doing the hard work of managing behavior through modified curriculum, often having to make adaptations on the fly.

photo courtesy of Landscape Structures®

But consider what's happening (or what has the potential of happening) between your students and their peers as you do those things.  Your student falls behind with a series of instructions the classroom teacher delivered.  Do you sit between your student and his typically-developing peers, thereby effectively preventing the peers from noticing your student has fallen behind and offering to help (or giving the student the opportunity to ask his peers for support)?

Your student drops her pencil while writing and has a hard time discerning all the motor steps required to retrieve it efficiently.  Do you swoop in and grab it for her, or motion to the peer sitting next to her to offer to grab it?

The class begins a community building exercise that requires a sophisticated level of social engagement.  The student you're supporting doesn't have a whole lot of reliable verbal output.  Do you recommend to the speech language therapist that she develops a method of response to keep your student with his class, or opt out of the experience, essentially further removing your student from being regarded by his peers as a social being?

Your role is crucial to meaningful inclusion.  You have the opportunity, likely several times a day, to be a bridge or a barrier.  Thank you for not only sometimes being the bridge, but building the bridge with inadequate materials in less time than you ever thought possible; for pointing out the bridges to the students; and for helping your students to cross them.

Getting Off the Sidelines

By the time students are in middle school, those who want to be athletes are getting comfortable in their sport(s) of choice.  Whether the involvement is meant to be just exposure to the activity or full-on competition, between the school's and community's offerings (outside of rural areas), typically-developing adolescents can generally find something that suits them.

Those with developmental or physical differences have a harder time fitting in.  (Just ask Damian Buchman, founder of Adaptive Scholastic Athletic Program, how difficult it is to find the proper equipment and facility for wheelchair sports!) Some students with autism might really enjoy what Special Olympics or other local adaptive recreation programs (TOPSoccer, for example) have to offer, whereas other athletes prefer to compete with their neurotypical peers.  Either way, the Office of Civil Rights (OCR) is putting schools on notice about their institution's offerings through a "Dear Colleague" letter published last week by the U.S. Department of Education.

I am delighted that the OCR is clarifying the application of Section 504 of the Rehab Act on this issue.  After all, as the letter points out, "access to, and participation in, extracurricular athletic opportunities provide important health and social benefits to all students, particularly those with disabilities.  These benefits can include socialization, improved teamwork and leadership skills, and fitness."

As a parent, I have been invited to so many school open house opportunities where there is lively presentation and discussion about the extracurricular opportunities afforded to typically-developing students, but when school representatives are asked about programs accessible to students with special needs, there is often a confused response, sometimes as if the possibility weren't even considered.  Our best-case scenario has been that indeed, my son with autism is welcome to be at the given activity, but there will be no support provided by the school.  (See also "The Social Currency of Extracurriculars".)

I have regarded that lack of support as the school flirting with disability harassment, and I believe this letter validates my concern -- and likely that of so many other families.

Of course, there's probably not a school in the nation that doesn't want to support its students with special needs in their participation in extracurricular activities, but where will the resources come from? In Madison, Wis., one high school supported a student with autism by hiring a college student to serve as his guide during track events.  The New York Times article (Aug. 1, 2010) included information about how much more expensive it is to educate a student with a disability versus a typically-developing student, and board members acknowledged the precarious nature of budget funding sources.

So how else can we get our students with autism off the sidelines and into the game?  Here are some ideas (subject to your district's restrictions on background checks or other liability concerns):

• Partner with an area college or university's Education, Health Care, or Psychology program to recruit students who need volunteer hours.  Try to keep the same student pair (as long as it seems to "click") for the duration of the activity so the student with autism can develop a rapport with his support person.  Consider transportation needs.
• Develop peer mentors in high school who can work with middle and high school students to offer support during activities.  Use service organizations like Key Club or honors groups, billing the role as a leadership opportunity.
• Get Applied Behavior Analysis line therapists to support students.
• Ask the student's Speech-Language Pathologist to review the objective or rules of the game during scheduled interventions (not during the activity itself).  Have the SLP create visual supports that any support person or even the student himself can use as cue cards, of sorts.
• What about those background checks?  Can you use the one the college or university required for admission into the program?  Will a Medicaid waiver cover that expense?  Is there a parent-teacher organization that can set aside funds as an annual budget item?  What about an athletic booster group?

Teachers and parents are experts at finding creative solutions.  What have you done that's been successful?

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?