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."