Friday, August 29, 2014

'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.

Thursday, August 21, 2014

Milestones are fun, but people matter!

In this era of measurable outcomes, numbers are important.  How many were served?  What percentage of various ethnic groups were represented?  How much did it cost?  How long did it take?  And all of those things are important -- but not without people.  And not without each individual.

At Good Friend, Inc., we never started with a measuring stick.  We started with an idea that was born from the needs of people; more personally, two young boys with autism spectrum disorder.  Before Good Friend's Awareness. Acceptance. Empathy. motto was penned, we as mothers were doing our best to help our sons' peers to understand who they were and why they mattered.  When we did that, we broke down barriers to forming relationships.  Seeing those results, and hearing other parents' heartbreaks, made it worthwhile to pursue wider success.

From some of us (back: Pam Lara, Sarah Zubarik;
front: Ken Genin, Denise Schamens at our board meeting
earlier this month) to all of you!
So while we're excited to tell you about some milestones, please remember that YOU matter.  And your student matters.  And that's why we do any of this at all.

  • Good Friend just celebrated its 7th "birthday"!
  • We ALL Fit was accepted into its first film festival!
  • We're officially going international! (The film festival is in Canada.)
  • Our music video by The Figureheads has passed 18K views!
  • We're moving into our first brick-and-mortar office next month! (Stay tuned for details about our "Grand Opening".)

Thank you for the role you played in helping us achieve these milestones.  Without your support, we could not have taken our message to more than 25K people ... and who knows how many more with the DVDs we've sold!?!

And let me bring this full-circle.  Today is my birthday, and last night, my 15-year-old son brought me flowers -- his own idea.  And while I might open his gift to me and it may be a picture of one of his special interests that he can't wait to share (because it brings him joy, therefore it must me also), those flowers are a milestone: He thought of something I like that holds no interest for him whatsoever.

May your milestones be celebrated today and always.

Monday, August 4, 2014

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."

Wednesday, July 2, 2014

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.

Thursday, June 12, 2014

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.

Tuesday, June 3, 2014

Good News: Red Carpet Premiere Party was a HUGE success!

Seems like Good Friend, Inc.'s hometown of Waukesha, Wis., has been the epicenter for a lot of bad news over the last few days.  Let me tell you some good news that will warm your heart.  And let me replace those sad images with inspiring ones.

On Wednesday, May 28, we welcomed joyfully more than 200 community members from southeastern Wisconsin to northern Illinois, from toddlers to retirees, to be part of a culmination of dreams and fulfillment of miracles.  More than 30 VIPs -- cast and crew members from We ALL Fit, dressed in their finest attire -- walked the red carpet at Marcus Majestic, right on the Waukesha/Brookfield edge.

As the program got underway in the packed auditorium, we explained "silent clapping" to our guests: instead of making a lot of noise that might be startling and uncomfortable for some of our guests, we opted to raise our hands in the air and shake them to demonstrate our appreciation.  And there was a lot of appreciating going on that night.

We appreciated fathers who support their
sons, regardless of their differences.
We appreciated families who make autism
awareness, acceptance, and empathy a joint effort.
We appreciated title sponsor AutoZone (staff members lower left
corner), whose Milwaukee regional manager Tony Blackmer
decided to pick up the tab for the venue on Good Friend's behalf.

We appreciated moms who cry as they think about
what this film means to the community at large.

We appreciated families and friends and neighbors
enjoying a rare night out at the movies.
We appreciated that people with autism are extraordinary,
often possessing amazing skills, like playing One Direction
songs on the recorder.

We hope you have an opportunity to see our latest autism peer sensitivity film soon.  We ALL Fit is now available on DVD through our website store.  We are also receptive to doing free community screenings around Wisconsin and northern Illinois.  If you think you can get at least 40 guests to attend, contact me ( and we'll set something up.

We appreciated our young stars, some
of whom just needed someone to believe
in them in order to believe in themselves.

Monday, May 19, 2014

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 CafĂ©.
  • 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?

Sunday, May 11, 2014

Register for the premiere of 'We ALL Fit'!

We look forward to seeing you at the Red Carpet Premiere Party of our newest autism peer sensitivity film, We ALL Fit!  But your admission to the May 28 event requires a ticket, and you can't get a ticket unless you register online here.  Have the names of your guests ready to enter in the form.  If you want all the tickets for your party mailed to a single address, there's no need to complete the address information for other guests.  Tickets will be mailed May 19.

Doors open at 6:15, and the program begins at 6:30 p.m.

This hour-long event hosted at Marcus Majestic is intended for those age 4 and up.  Formal attire is welcome, but not required.  Popcorn and soft drinks will be served, thanks to the generosity of our sponsors: AutoZone, Wisconsin Vein Center, The Ability Center, and Ford Construction Co.

Email if you have any questions.

Monday, May 5, 2014

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 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!

Wednesday, April 9, 2014

Six Weeks of Pure Awesome

March and April are hands down Good Friend, Inc.'s busiest months.  We're right in the thick of our two big annual fundraising events: the ongoing Highlight It Up Blue campaign, which this year involves four stylists and runs through April 23; and our Hoa Aloha Autism Awareness Bowling Event, coming up on this Sunday, April 13.

If you indicated you're "Attending" our Highlight It Up Blue Facebook event, you've seen some of the pictures.  We've doubled the number of schools participating in this year's campaign, and again have had to turn some away (sorry!) because so many communities are lining up to support autism awareness, acceptance, and empathy.  To date, here are the top five leaders and their gross receipts:

  1. Rose Glen Elementary (Waukesha) - $985
  2. Waukesha STEM Academy-Randall - $725
  3. Park Lawn Elementary (Oconomowoc) - $600
  4. Mukwonago High School - $520
  5. Butler Middle School (Waukesha) - $470

Waukesha STEM Academy-Saratoga and Waukesha West High School also participated.  We'll be at Heyer Elementary (Waukesha), Edgerton Elementary (Hales Corners) and Waukesha South High School before it's all over.  THANK YOU for helping push us toward our goal of raising $7,000 to facilitate our staff and student trainings in elementary and middle schools!

How are you involved in this Sunday's BIG event at New Berlin Bowl?  We have some 200 bowlers registered on teams, plus more than a dozen volunteers and nearly 100 donors.  There are lots of opportunities for you to get in on the action!  Thursday is the last day to register or donate online.  If you show up on Sunday, we'll try to get you on a lane as they're available.  The morning (10:30 a.m.) start time should still have openings.  Even if you're not bowling, you won't be bored!  Check out some of our silent auction items:
two different "Beach Day" buckets, starting bid = $10
"Kids' Entertainment" basket, starting bid = $45

This is one of eight images in the framed 28" x 34" "Hearts" print, starting bid = $60

Green Bay Packers autographed football, starting bid = $100
pair of admission tickets, starting bid = $45

"Outdoor Fun" package, starting bid = $10

"Indoor Fun" package, starting bid = $20
And our raffle items include this stunning pair of diamond stud earrings from Diamond Nexus and a VIP game package for four from the Milwaukee Brewers!  Tickets are $5 for one or $20 for five.  Choose which prize container you want to put your tickets in.  Need not be present to win.  Drawing is at 3 p.m.

All of this goodness facilitates the good work of Good Friend: going in to schools, colleges, universities, and summer camps to lay the groundwork for positive, healthy social interactions between children with autism and their peers.  If you need more information on any of these RIGHT NOW opportunities, please contact, or call 414-510-0385.

Tuesday, March 4, 2014

Autism Awareness Preparedness

World Autism Awareness Day is just over four weeks away.  How are you preparing?  In my house, I'll start bringing out my exterior blue light bulbs and hanging the Autism Awareness ribbon garden flag in a couple of weeks.  I'll get my Highlight It Up Blue hair extensions and wear my button on my jacket.

I love it when schools plan their activities thoughtfully.  While many of us are "aware" of autism, how can we make that meaningful?  How do we hone awareness to understanding, and channel understanding to acceptance?

At one school, the parent-teacher organization has decided that Good Friend's curriculum is worthy of an annual budget item.  They are so prepared for our return that our Awareness-Acceptance-Empathy message has become part of their school culture.  And that culture is inclusive of students with autism spectrum disorder (ASD).

By giving the school community a common vocabulary for discussing ASD, we've also encouraged budding self-advocates.  One student, pictured below, took the pole position in the presentation for his grade level this year.  He came up to the front of the class, explaining what autism is like for him.  Of particular wonder was his self-coined term, "brain overload".  He said that when there's too much information coming in (as sensory input), he gets confused and needs some quiet time to get re-organized.  He shared his strengths and his interests, encouraging classmates to look beyond some of his autistic symptoms to see the person who wanted connection.

And it was our pleasure to provide a positive platform for self-disclosure today for another student with ASD in middle school.  We don't want to "out" a student with autism in front of his peers in 6th-8th grade, but give him an opportunity to share (or not) about how his differently-wired brain impacts him.  The student knew we were coming and the topic of our presentation.  We took our cues from him as we discussed the science of autism with the class.  And while he was participating by answering general questions throughout the first 20 minutes, at minute 23 of 60, he began to connect himself with ASD in front of his classmates.  Following the 16-minute screening of Choosing To Be a GFF, the last third of the Individualized Classroom Presentation was so very meaningful as he continued to engage.

Certainly, those middle schoolers are aware of autism.  And they understand.  Time will reveal the level of acceptance they extend.  And we look forward to hearing about it!

Monday, February 10, 2014

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!

Monday, February 3, 2014

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?

Wednesday, January 29, 2014

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!

Thursday, January 16, 2014

A week to remember

Before we even heard the song, we couldn't wait to share it.  And while we finally got that chance last Thursday, most people don't know that presentation was the culmination of two years of collaboration.  Good Friend, Inc. co-founder Denise Schamens met Greg Marshall of The Figureheads "by chance" at an area promotion.  That conversation lead to a meeting near The Figureheads' Milwaukee studio, and an exchange of ideas began.
We were so grateful that Dave Olson and Greg Marshall (back row, left) and
Miss Wisconsin Teen USA Patience Vallier (back row, center) were able to join us
at Cushing Elementary in Delafield, Wis., on Thursday, Jan. 9, for the world premiere!

To get a better feel for Good Friend's mission and impetus for our new elementary school film project, Greg attended our May, 2012, Community Conversation: Meaningful Inclusion in Elementary School, sacrificing time with his family to be with us.  While we continued to spread the word about our vision, busyness with our research study postponed forward motion on the film and music until the spring of 2013.  Last summer, the script was written, the funds were raised, the cast was chosen, and the filming completed.  We had shared progress with Jeremy Bryan and Greg, who in turn shared it with Dave Olson.  The Figureheads' musical component was our missing puzzle piece.  Until it wasn't.

It was on Sept. 17 that we heard the song for the first time -- and we were in love.  Though it wasn't what Denise and I were expecting, it was exactly what it needed to be.  And as it turned out, the song's title was the same as the short film's -- "We ALL Fit".
Get a shirt to commemorate the song and film --
just like the cast and crew wore at the premiere!

Most of the student cast of the short film returned to be the ensemble cast of the music video, which Denise directed and Scott Dahm filmed with assistance from Michael Foucault.  Tim Miller worked with Denise on the video editing after Dave recorded additional singers Noelle Budde (my daughter), Evelyn Barta, and Regan Carter at his studio, mixing it all into the magical anthem it has become.  The single is available for download on iTunes and Amazon MP3, and is streaming on Spotify, to name a few outlets.

So, yes -- it's incredible that the news story our local FOX affiliate aired has been shared more than 1,000 times in the last week.  And, yes -- we're thrilled that our song promoting autism acceptance and bullying prevention has been viewed more than 6,000 times on YouTube.  But what makes our hearts soar is hearing from you.  What does this song mean to you?  How have you shared it?  How do you plan to use this song to make a difference at your school and/or in your community?