HighLight It Up Blue, year 2!

Welcome to the 2nd annual Good Friend HighLight It Up Blue for Autism campaign!  Last year, well over 100 of you in the metro Milwaukee area visited Salon Brillaré in Pewaukee, or went to one of our on-location events in Waukesha, New Berlin, or Milwaukee, to get blue natural hair extensions, feathers, and/or sparkly tinsel strands to help create autism awareness.  This year, we've added two more stylists and locations!

Not only will Janet D'Amato be taking appointments at Salon Brillaré, but also Erin Hitt at Merle Norman Salon (Brookfield Square) and Gina Andrade of Hair by Gina (a Solo Salon, Waukesha)!  For $10, clients can choose one product, or pump it up or mix and match any three choices for $25 (per client).  New clients are welcome!  And they'll be at our Hoa Aloha Autism Awareness Bowling Event on April 14!  We're working on other on-location opportunities.  Stay tuned to our Facebook event page for more information.  Or if you'd like to get us in at your school or office, and you're sure at least 10 people would participate over the course of an hour or two, contact Chelsea (414-510-0385).

I know, I know -- it's extreme, right?  Blue hair?!  How the heck are you supposed to blend with blue hair?  That's kind of the point.  We don't want students with autism to feel like they have to blend.  They have an invisible disability with some very visible manifestations.  Be willing to stand out and stand up for them during National Autism Awareness Month!

But if blue hair is just too personal, what about blue light bulbs outside your house?  Check out Autism Speaks' Light It Up Blue campaign.  World Autism Awareness Day is April 2!  Blue it up!

Crossing Bridges

In the HBO Films movie Temple Grandin (2010), opening doors is a thematic image.  Since Temple is a visual thinker, she latches onto the metaphorical concept of doors opening to new experiences.  As she walks through door after door on her journey to her life's work, we see how many people were there to guide her to or through those doors.

After watching the season premiere of "World of Jenks" on MTV last week, I saw a new thematic image in this journey of supporting people with autism: crossing bridges.  Andrew Jenks, the documentary film maker whose immersion in the lives of young adults is the subject of his MTV series, is following three 20-somethings this season: Kaylin, a cancer survivor and fashion designer; D-Real, a dancer and community activist; and Chad, a young man with autism going through the "Transition" from secondary education to whatever comes next.

Chad espouses in me thoughts of my own 14-year-old son, who's staring ahead toward his high school years.  Watching Jenks with Chad reminds me of my son's daily living skills mentor.  She challenges him to try new things, as Jenks did with Chad in that first episode.  Jenks learned that Chad loved to visit The Castle, an amusement park of sorts with a miniature golf range.  There's a suspension bridge there, and as Chad is afraid of heights, he didn't want to cross that bridge.  He was accustomed to finding another way.  But Jenks encouraged him to try -- even offering to hold Chad's hand as they crossed together.

Chad's anxiety-ridden face transformed at the other side of the wobbly structure.  The glow of pride came over him, and the sparkle of joy.  Once he experienced that exhilaration, he wanted to go back over and over that bridge -- without needing Jenks' support.  Chad saw the fun in something he was previously adamant that he couldn't or didn't want to do.  But he might never have had that experience if Jenks weren't there for him.

I am excited to watch Chad cross many bridges this season through the World of Jenks window.  And as sad for Chad as I will be when Jenks is no longer there to help him cross bridges, I will trust that others will fill those shoes.  Maybe it will be a job coach or vocational services counselor.  Maybe it will be his girlfriend or a "neurotypical" peer.

And I know my son's daily living skills mentor won't always be there to challenge and support him as he tries new things.  I hope Jenks' audience is inspired to befriend and support the Chads, like my son, of the world.  Because they can do and experience so much more than most of us have ever given them credit for.

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.

Sowing the seeds of self-determination

There's this word in the Special Education universe that's often misunderstood until, as a parent, you and your child are in the thick of it: Transition.  It's not the lowercase transition, which occurs so many times in the life of a student with special needs.  There's the transition from an Individual Family Service Plan (IFSP) that preschoolers have from birth to age 3, if they qualify, to the Individualized Education Program (IEP) that the local school district drafts.  Then the transition from Early Childhood classes to Kindergarten.  Then from elementary school to middle school.

And somewhere along that middle school time in the state of Wisconsin, or in high school according to federal law, families start to hear about this Transition.  Transition is the period of time and series of events required to prepare students with special education needs for life after secondary education.  While students with IEPs may graduate with their peers, they may also opt to stay in the public school system, receiving related services until they're 21 years old.  This Transition planning is multi-faceted and critically important.  Perhaps most importantly, it's a time when students are required to engage actively in the process and select desired outcomes.

The Wisconsin Department of Public Instruction has a series of four publications intended to assist Transition teams with various aspects of the process.  There is one that speaks to the steps families and schools can take when students are yet in elementary school: Opening Doors to Self-Determination Skills.  Here's the list for students (found on p. 7 of the booklet):

• Know your strengths (what you are good at).
• Know your areas of need (where you need help).
• Know your interests (what you like).
• Know what kind of support you need to be successful.
• Learn how to make choices.
• Be a part of Individualized Education Plan (IEP) meetings, at first by introducing IEP members and describing yourself (interests, likes, dislikes).
• Share a list of accommodations you need with general education teachers.
• Participate in clubs, sports, and other activities kids your age are in.
• Begin to understand your own disability and what it means to your learning.
• Choose a time and place to study and do homework at home each day.
• Help out with family chores (making dinner, shopping, cleaning your room).
• Volunteer and help out in your local community.
• Enjoy who you are! Learn about yourself. You are more than your disability.

How can students with autism be self-aware if we don't start having these conversations with them early?  The better they are at being familiar with themselves, the better they will be able to determine their own needs.  Knowing their strengths and their supports is part of self-determination.  And being able to share those things with peers, teachers, and eventually employers, will make that Transition more smooth.


So as a parent and professional, I encourage you as parents and teachers to be Transition-minded with your students when they are in second grade.  And by the time your student with autism is in middle school, they will be far more likely to participate meaningfully in this mandated process.

Look Before You Leap

Last week, more than 100 Special Education teachers and administrators, plus parents of children with autism spectrum disorders and related providers, converged in our area for a combined Community of Practice (CoP) on Autism Spectrum Disorders and other Development Disabilities (ASD/DD) and Autism Program Support Teacher (PST) meeting hosted by the Wisconsin Department of Public Instruction (DPI).  The focus of the day's sessions was Evidence-Based Practice (EBP).  As such, there was an introductory presentation on the meaning and significance of EBP in the field of autism education and treatment.  Key themes emerging from this presentation were a) the importance of implementing the intervention with fidelity (as the researcher/developer of the intervention intended) and b) discerning the most appropriate intervention for the individual learner (knowing that not every intervention will be effective for every person with autism).  This first session was followed by overviews of select EPBs and discussion of case studies where various EBPs should be applied.

There are two critical FREE resources that educators and caregivers should know about regarding EBPs.  (I mentioned them in a blog in September 2012, but they deserve additional explanation.)  They are Autism Internet Modules (AIM) and The National Professional Development Center on ASDs (NPDC).

With so many possibilities to explore for the treatment and education of our loved ones with autism, choosing the road to travel on can be intimidating.  These websites not only offer the research basis for EBPs, but in the case of AIM, offer actual training in video modules regarding the interventions, which may include some best practices (ones that are considered tried and true, but lack the research criteria required to qualify as an EBP).  So instead of reading dozens of articles and books, you can download a PDF at NPDC's website (click on Evidence-Based Practices and then on EBP Briefs).  Each of the 24 EBPs has its own  components, including an overview, a bibliography-format evidence base list, steps for implementation of the EBP, and an implementation checklist.  This helps the reader to implement the EBP with fidelity.

More of a multi-media learner, or want more than the 24 EBPs listed through the NPDC?  Then click on over from there to AIM's website.  The Ohio Center for Autism and Low Incidence [Disabilities] (OCALI) hosts this gem, which features the "alpha" interventionist on the practice teaching you how to use the intervention!  There are pre- and post-module assessments, so you can determine if the practice is worthy of the time you'd take to complete a module (anywhere from 45 minutes to several hours).  There are FAQs, discussion questions, and lots of supplemental resources for each module.  A newer feature is the ability to earn a certificate of completion for only $10 per credit hour.  Otherwise, there is NO FEE to use the site.  Just create a login and password; and you'll never get spam or other solicitations from OCALI or AIM.

AIM has 41 modules available and another 34 in progress, spanning from Early Identification of ASD to Autism in the Workforce.  These are wonderful for professional development, continuing education, family supports, caregivers, educational assistants, and pretty much anyone who interacts with people with ASD.

There are almost infinite ways you can encourage the use of these resources in your community.  How are you using, have you used, or do you plan to use the NPDC and AIM to help determine your next steps?

Coconuts + Autism Awareness = Hoa Aloha

There's nothing like the thought of Hawaii to bring a smile to our frozen winter faces!  When we first started planning our bowling event more than five years ago, we chose a theme that has become the spirit of our most significant annual fundraiser.  Hoa Aloha means good friend, and that's what this family-friendly day is all about.  It's the spirit of ohana -- a family sense of working together without judgment, where no one is left behind or forgotten.

We bring in ramps for our younger bowlers or those without the upper body strength to get the ball to roll down the lane.  We can put the gutter guards up so knocking down pins is more likely.  We understand when the noise and the waiting becomes too much for our friends with autism and they run out of ways to cope.  We exchange compassionate glances instead of disapproving stares.  We raise our eyebrows with joy instead of furrowing them with scorn.  We support each other, understanding that while one in 88 of us has autism spectrum disorder, we're all in it together.

Awareness. Acceptance. Empathy.

If that sounds like the kind of mission you'd like to support, please get a team of four to six bowlers together and register to join us at New Berlin Bowl on Sunday, April 14, starting either at 10:30 a.m. or 1:00 p.m.   You'll have two hours and fifteen minutes to bowl two games.  For $110, your team members will get shoe rentals, unlimited soft drinks, plus the two games and a festive lei per person.  They'll be qualified to win great prizes in the following categories:

• Top Fundraiser - Individual: a Toshiba 50" LED L2200U HDTV 1080p 60Hz
• Top Fundraiser - Individual, Runner-Up: an Apple iPad mini
• Top Fundraiser - Team: TBA
• Highest Score: Miller-Coors products
• Best Costumes - Team: New Berlin Ale House Bowling Party for Ten People
• Best Costume - Child: TBA
• Most Gutter Balls: TBA
• Most Creative Use of a Coconut: the coveted coconut bowl from Pepper it Up pottery!

PLUS DOOR PRIZES!  Here's how you get a chance (or several) to get in on those ...

• Raise at least $10 in donor pledges.
• Wear a Good Friend shirt.
• Be a current member of Good Friend.
• Show up with blue in your 'do. (stay tuned for more on this year's HighLight It Up Blue campaign!)

Participants can also have their team photo taken by a professional photographer at no charge!  (Donations appreciated.)  Even if you don't want to come and bowl, you can pick up some raffle tickets for your chance to win a Brewers VIP Package for four, get some goodies (including fresh popcorn and gluten-free selections!) at the bake sale, or just grab lunch at the Ale House and cheer on your favorite bowlers.

We are grateful for those who support our staff and student trainings through this fundraising opportunity, and for all the volunteers who make it happen!  Watch for updates on our Facebook event page.

Getting Off the Sidelines

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

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

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

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

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

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

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

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

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