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?

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!

The Beauty of Laughter

If there's one thing I've learned while parenting two children with autism spectrum disorders, it's that laughter is as important as the air we breathe.  I've encouraged my children to find the humor in jokes and have explained to them why others laugh at certain parts of movies or commercials.  And, as two people with extraordinary capacity to memorize parts of TV shows or movies, they make one another laugh with their recollections of bits that appeal to them -- usually without anyone around them understanding what's so funny.

I've often said to young ladies dear to me that they should marry the man who makes them laugh (once all those common sense requisites are satisfied, of course).  It is that quality that remains long after physical appearances change, and can take difficult circumstances and shine a ray of light and hope.  A well-timed laugh, as long as it's at no one's expense, is good for the soul.  It reminds us not to take life so seriously.

If you were anywhere near a TV or social media in the last week, you've heard about Alexis Wineman.  She's the 18-year-old woman who represented the state of Montana in the Miss America competition over the weekend -- and she has autism.  The sweetheart of Big Sky Country captivated the hearts of the disability community as well, inspiring youth with differences to stretch themselves toward big dreams.

In her ABC News interview, she discussed her talent for the competition: stand-up comedy.  She told ABC News' David Muir that as a child she preferred to be alone for fear of being laughed at.  But in overcoming some of her autistic symptoms, she's overcome some fears as well.  She said of her pageant talent choice, "I realized, if I laugh at myself, then that's okay."

I wish I could say I saw her routine, but her talent was not for exhibition during the telecast.  Though she won America's Choice through an online voting contest, she didn't advance beyond the final fifteen.  But seeing her clad in glamorous pajamas with a towel wrapped around her head on the Miss America stage in Las Vegas during the preliminary phase made me smile.  She never looked so beautiful to me.

Alexis ran on the platform, "Normal Is Just a Dryer Setting - Living with Autism."  Thank God, Alexis, you are not normal.  You are extraordinary!

The last word comes from Miss Montana: "A girl who has a few differences is Miss America material, no matter what they are!"

Autism and Relationships in Adolescence

In December, I chose to share some thoughts about friendship skills of students with ASD in preschool and elementary school.  As students move into secondary school (grades 6 through 12), the nature of their relationships change.  Puberty becomes a factor not only in physical development, but in social-emotional development as well.  And just as physical maturity varies wildly in this life phase, so does social-emotional maturity.

Most neurotypical (NT) tweens will form strong bonds with a select few peers.  This may be a nuclear group they retain from elementary school during the transition to middle school, or it may be a mix of peers: some from the "old" school, some from the "new" school, and others from extracurriculars (sports, faith-based groups, etc.).  Some may venture into "romantic" relationships, and even that will be a spectrum.  As they near the end of middle school, there will be those who fall "head over heels in love", forsaking their friend base to explore this new relationship category.  Others may dabble, but (appropriately) don't take these early romantic entanglements too seriously.

While parental engagement in an adolescent's social life is still necessary, children may begin to rely more on peer guidance for relationship management.  And for students on the autism spectrum, they may have precious few friends in middle and high school.  This may be by design; decoding unwritten social rules is exhausting.  Perhaps maintaining a couple key connections taps the available social resources for your student with autism.

Zachary Riggins, The University of Alabama

Just as parents of NT children seek to influence relationships in their adolescent's peer groups, those who care for students with ASD should also continue to guide and explain social relationships.  People with autism often miss the nonverbal communication styles that become increasingly important in secondary school.  Consequently, they may not respond appropriately.  Their inadvertently inappropriate response may offend a peer without proper understanding of autistic neurology.  And, in extreme cases, may draw the attention of authorities.

Besides the popular approaches to socializing such as video modeling or Comic Strip Conversations, you might consider laying down some ground rules.  Quantitative guidelines such as "2 text messages per day, per friend", or "1 phone call every 3 days" might help your teen establish boundaries that are healthy both for him or her and the friend.  Don't be afraid to use visual reminders of guidelines, such as sticky notes or checklists.  And be very careful about allowing adolescents with autism onto social media outlets where their social understanding (or lack thereof) can be exploited.  Squag is a great website for tweens and teens with autism (and their siblings) to start learning about personalizing a place on the Web using a safe, secure platform.

While it is important to encourage some independence in socialization for adolescents, it is imperative, for the well-being of our children, to remain actively involved in the development of healthy social-emotional skills.  Thank you to the speech language pathologists who are are purposefully working with students to be sure these skills -- which we know to be pre-employment qualities -- are nurtured!