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!