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?