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.

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!

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! http://www.goodfriendinc.com/store.php

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?

"My Favorite Things", autism-style

My son with autism is nearly 15 years old.  When things start buzzing around Christmastime, he has a guarded enthusiasm.  He loves to bring out the movies of the season, but isn't so excited about how much changes around the house.  So it was especially beautiful when he stopped on Saturday morning and noticed ornaments on our tree.  He found the ones that had meaning to him, and pushed buttons on those with sound effects.  It was good to see him enjoy things on his terms.

And though I'm not sure why, it made me think of the Rodgers and Hammerstein song "My Favorite Things" from The Sound of Music.  And I put together this alternate, interpretive version -- a compilation of all things my boy (and a little of my girl thrown in, too).  Some of it just might resonate with your experiences.  So get your tune ready and sing along!  (Yes, I cheated out of a stanza in each series.  You get the idea.)

Julie Andrews sings "My Favorite Things" in Rodgers & Hammerstein's
The Sound of Music (Robert Wise Productions, 1965)

Shirts without long sleeves or rough tags or stitching

(Put that junk on me and watch me start itching)

Pants I slide into without buttoning -

These are a few of my favorite things.

Schedules and checklists so I know what’s coming

People who don’t mind my flapping and humming

Toys with lights flashing but not ones that sing -

These are a few of my favorite things.

When the dog barks, when my sis cries, and my ears hurt bad,

I block it all out with my hands or my voice, and then I don’t feel so sad.

Swimming and jumping and water slide riding

Getting away from the noise while I’m hiding

Puppies and kittens that snuggle and kiss -

These are a few things that bring me such bliss.

My mom, dad and teachers and friends, but not strangers

Light sabers, Nerf guns, and all Power Rangers

Time by myself without too much talking -

These are a few of my favorite things

When the plans change, when I can’t cope, and I’m feeling mad,

I rewind a movie to my favorite part, and then I don’t feel so bad.

Make sure you build in plenty of time for your student with autism's favorite things this holiday season!  Share some of your child's favorite things in the comments.

What comes after Awareness?

It's a busy month in the Good Friend calendar: Autism Awareness Month.  We caregivers are all bustling about with blue in our 'dos and shining our lights and wearing our puzzle piece pins.  And as my own children with ASD get older (they're now 14 and 11), they're taking more notice of all the buzz.  As they take more notice and I explain in more depth, it all adds to their self-awareness.  So in our household, Autism Awareness Month really is a triple threat (and I mean that in a benign way): It's important to me as a mom, to our organization's work, and to my kids as people with ASD.

One of the tweets I (follow ChelseaMB) posted on World Autism Awareness Day was met with the following question: "after aware, then what?" [sic].  For me, the reply took far fewer than 140 characters and was instant:  Just what #GoodFriendInc stands for: ACCEPTANCE and EMPATHY!  I didn't need to ponder that.  It's what I've been focused on through Good Friend for the last five years, and even longer as a mom.

Good Friend's philosophy is that you can't explain what you can't name, so Awareness is step one.  That's what makes Autism Awareness Month so foundational.  But it cannot stop there.  Once we are aware, we work toward understanding.  Understanding leads to Acceptance.  That's step two.  When we move into understanding autism on an experiential level, we foster Empathy.  This is the step where the magic happens.  Once we've felt what it might be like for our friends with autism, we can become natural supports for them.  We will remember what we've learned when we see our friend or colleague with autism struggling, and will respond in a constructive -- versus judgmental -- way.

Constructive responses lead to successful interactions.  And more than anything else, success begets success.

So while I realize that blue for autism in April won't create autism-friendly jobs in May, it certainly does create opportunities for discussions!  Seize those opportunities to discuss with your students, your co-workers, and your community members.  Create awareness of the strengths of individuals with ASD.  Create awareness of the resources in your community, or discuss what's lacking and call the stakeholders to the collaborative table to figure out how it can be manifested.  Self-advocates: Improve self-awareness of your talents and capitalize on them.  Become aware of what supports might be there for you and put those tools in your toolbox.

Awareness is the foundation; keep building!

Celebrating You-ness

Since March 2 is a celebrated day in American literature, I thought I'd take this week's blog and make it an homage of sorts to the late great Dr. Seuss (Theodor Seuss Geisel).  His books have been favorites on children's lists for generations, and many a memorable quote are immortalized.  One of my personal favorites (though arguably misattributed to Seuss, as there is no citation) adorns each of my children's bedroom walls in a frame:

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.

Here's why, as the mother of two children with autism spectrum disorder (ASD), I believed this was so important to impart to my kiddos.  At the time, both of my young children were receiving intensive, in-home Applied Behavior Analysis (ABA) therapy.  The team meant well as they made program goals for them, including one for my daughter to replace her self-stimulatory hand-flapping behavior with something "more appropriate."  As we all worked harder week by week to get her to recognize the behavior as odd, it occurred to me that we were asking a 6-year-old to perhaps be more self-conscious than was necessary.  After all, shouldn't her peers accept her for who she is, hand flapping and all?  And if she could explain this behavior had purpose, which she told me helps her use her imagination, shouldn't that be good enough for her friends and caregivers?

I decided it was indeed good enough, and we stopped that program.

My children have differently-wired brains.  There is likely no amount of ABA that will graduate them off the autism spectrum.  Indeed, the interventions we've employed, including ABA, have made mind-boggling differences in their abilities -- particularly in the case of our now 11-year-old daughter.  But to insist they repress their uniquenesses for the sake of universal acceptance is to deny their thoughts and feelings -- to ask them to be other than who they are.

And I became convinced, and wanted them to know, that those who mind don't matter.  And those who don't mind, because they've taken the time to understand (after we'd taken the time to teach), are their true friends.

What about being a Good Friend to a very special sibling?

Good Friend co-founder Denise Schamens writes today's blog ...

Having three children was something I wanted after my two boys were born.  I hoped that my girl would come with our last attempt.  We were excited to find out at five months that a daughter was on the way!

Little did I realize, people were already talking: "Why would she have another after having a son diagnosed with autism? Is she crazy?"  As shocked as I was to hear about this chatter, I realized that the challenges that I faced with my middle son would be pressed on my other two children -- whether they wanted it or not.  My insecure side questioned the choices we made with having a third, but my confident side soon won over.  I decided bringing two more confident, accepting, unique and enlightened individuals into this world would be all worth the pain that they may have to endure by having a brother with autism.

I was right! I wouldn’t have it any other way.  It hasn’t been an easy journey so far, but when I see them all together at their best, it melts my heart!  To hear my oldest stick up and protect his brother, no matter what, helps me realize that as difficult as it has been for him, he is shaping up to be just what I had dreamed him to be. 

I trust that the example that my husband and I set, regarding acceptance and educating others on what this disability entails, has been helpful for him as he tries to figure out how he fits into all of this.  Insecurity and social situations are difficult for my oldest and he struggles to find his own place in the world.  But I took some time recently to sit down and find out how he feels about all of this.  

With a sigh of relief, I can say he doesn’t have deep, unfulfilled anger or resentment about his brother or the situation.  His biggest gripe centers around scheduling: Because of his brother's therapy schedule or inability to handle certain situations, he may not be able to go somewhere he planned.  He has never lost friends due to his brother having autism, nor has he ever wanted to leave our home because it felt uncomfortable or embarrassing.  If anything, our home has become a magnet for his friends and a safe place for them to come and be accepted no matter their own situations. 

I do realize that this isn’t the case for some siblings, but I have to believe that the way we as parents have handled the diagnosis, accepted it, and worked tirelessly to help others understand has equipped my neuro-typical children to cope in ways that will strengthen who they are and who they will be.

Though she's now in her 20s, Maureen (@MaureenSupersib on Twitter) continues to write about her experiences with her sibling with autism and parents through her blog.  Her insight for adolescents who have a friend with a sibling with autism is rare and wonderful, and she's kind enough to share with us. 

Here are some tips I have about someone who's a friend of a (super)sibling of a person with autism: 

• I need a friend who's not going to assume they understand what it's like to live with a sibling with autism. You may have your own family drama going on at home, but I am in a completely different and unique situation, and I need that to be respected. 

• A sign of a really great friend is not being afraid to interact with my sibling -- otherwise I'll feel weird about having you over to our house and it will make me sad that you seem like you're afraid of him. 

• It's totally fine to ask questions (especially if it helps give you more perspective on autism and on my life) as long as they are intelligent and sensitive questions (like, don't ask, "Is it like Rain Man?"). 

• NEVER NEVER NEVER use the R-word in a negative way or make fun of anyone with a disability around me. I mean, don't do it at all, really, but if you do that in front of me, our friendship will be questioned.  

• Invite me OUT.  I need a break from everything going on at home, especially if my parents have limited resources to help us all cope with the challenges of our family dynamic.  I like to feel like I could have a "normal" life sometimes. 

We all have different ways of coping with our emotions about a situation.  I am doing a book study right now with my husband on being Married with Special-Needs Children: A Couples' Guide to Keeping Connected (Laura E. Marshak, Ph.D., and Fran Pollock Prezant, M.Ed., CCC-SLP; Woodbine House, 2007).  I believe that what I am learning from this book and through this study can be applied to my children, who are siblings to someone with special needs.

The Basic Components of a Healthy Marriage can also apply to the Basic Components of a Healthy Family.

• Connectedness through time, affection both verbal and physical 

• Skills in communication and conflict resolution 

• Tolerance and respect for each other despite flaws 

• Being a team and being adaptable to changing circumstances 

• Commitment to the family (p. 22)

A big part of being a sibling to someone with autism has to do with genuinely looking out for each other and recognizing small ways to make each other’s life a bit smoother.  Treat each other as unique individuals.  If the parents or caretakers are in a healthy place and striving for peace, I believe we will be teaching our children to speak up and work to achieve a fulfilling life with their sibling with autism -- and maybe teach the world about true acceptance!

"Thank you for supporting the mission."

I am an unashamed Goodwill shopper.  In fact, for Easter, my daughter and I wore beautiful things I had found at Goodwill somewhere along the line.  And I just love it when you make your purchases and when you drop off donations, an employee says to you, "Thank you for supporting the mission."  I don't shop at Goodwill for the great bargains (exclusively); I shop there and donate goods to them because I believe in Goodwill's mission, its vision, and its values.

Events have great power and purpose when we believe.  Our belief in the power of acceptance has led Good Friend on a journey of five years.  We believe that children tease what they don't understand, so we purposed ourselves to teach them about autism spectrum disorders.  We believe that friendship is a right of all children -- not only socially adept ones -- and consequently we developed a model to foster relationships.  We believe that relationships have impact beyond school, and look forward to hearing stories of employment after graduation that can be tied back to what students learned by participating in Good Friend services.

We have had parents who believe that Good Friend can make a difference in their child's educational experience offer to pay for our services on behalf of the school.  And we generally respectfully decline -- not because we don't believe that we can make that difference, but because we know that the administration and staff have to believe, too.  We need them to be partners with us in autism awareness, acceptance, and empathy.  Because otherwise, when our hour is up and there is no support for those social pillars, they will crumble.

During National Autism Awareness Month, we encourage you to support Good Friend's mission by

• participating in or donating on behalf of a bowler for our 4th annual Hoa Aloha Autism Awareness Bowling Event; Sunday, April 22, at New Berlin Bowl.
• "[High]lighting It Up Blue" with a blue feather, natural hair extension, and/or sparkly tinsel in your hair by Salon Brillaré.
• hosting a screening of one or both of Good Friend's peer sensitivity films.
• inviting Good Friend to come to your school (via staff initiative!) to work with faculty and/or students
• making a donation to Good Friend, Inc.
• telling someone about the importance of social support for all students, and how Good Friend can help create a culture of acceptance.

Thank you for supporting the mission: To create autism awareness, teach acceptance of differences, and foster empathy for students with autism spectrum disorder among their typically-developing peers.

Different ≠ Deficient

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

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

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

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

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

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

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

Think about it.

To tell or not to tell ...

(adapted from our Feb. 2010 newsletter)

As we talk with parents of children with autism spectrum disorder (ASD) and their teachers, we are often asked a form of the following question: “Is it a good idea to share the student’s disability with his/ her classmates?” Teachers cannot share that information by law, as it violates the student’s privacy. Parents are often concerned the disclosure of the label will lead to bullying or teasing. And if a student is doing “fine”, why rock the boat, right?

As mothers of students with special needs ourselves, we consider our children’s developmental stage and self-awareness before deciding what information will be shared with whom and in what format. We encourage teams supporting students with autism to do the same.

Socially, we have found that children tease what they don’t understand. By taking the mystery out of the differences, we can begin to teach acceptance. Once we accept that the student’s limitations are not as a result of willful disobedience or failure to perform, we can start to foster empathy.

We have gone to schools before where there are a number of students in the same grade level with ASD. Some parents were willing to consent to disclose their child’s ASD, whereas others were not. In

those instances, when we come in to do a Peer Sensitivity Workshop (PSW), a couple of things happen: 

1. We are able to identify within minutes through observation who the other children on the spectrum are. 
2. As we interact with the typically-developing peers about autism, they ask about or comment on this classmate we suspect has ASD. Because we do not have parental consent, we will not discuss that child to maintain his or her privacy. However, it is important to note that many, if not all, of the children participating in the PSW have identified differences long before we came to teach them how to be good friends. And now instead of having their questions answered in a positive, caring atmosphere, they may be left wondering.

While we are not suggesting it is appropriate universally to divulge a child’s diagnosis, it is worthwhile for caregivers to do an honest cost-benefit analysis. In our opinion, it is better to start the discussion early so everyone is better equipped to be supportive.

If you want help establishing a common language and a culture of acceptance for your student with ASD, contact us (Chelsea 414-510-0385, Denise 262-391-1369).