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!

Happy Holidays!

I will be refraining from writing a blog entry this week and next to celebrate the season with my family.

If you have enjoyed or benefited from reading these posts, what a lovely reciprocal gift!  Many of you have sent encouraging remarks over the past year, telling me of the ways you're promoting Good Friend's Awareness-Acceptance-Empathy message.  From posting entries on your office door to using specific pieces as discussion platforms during staff meetings, you are putting words into action.  For that I thank you!

Photograph: Andreas Kuehn/Getty

During this final week of 2012, I encourage you to help us promote our mission through your charitable gift.  Donations postmarked by December 31st can be mailed to Good Friend, Inc., 808 Cavalier Dr., Waukesha WI 53186.  Online donations (click on the Donate button) will be accepted through midnight EST.

Warmest wishes to you and yours for a holiday filled with understanding and friendship!

A Spectrum of Friends

First, to honor the lives of the students and staff lost in the Sandy Hook community in Connecticut ...  There is no amount of explanation that will heal hearts, but we hope our prayers for the survivors and tears for the slain will resound across miles and time.

This week's topic was to be based on friendship in elementary school -- a follow-up to last week's thoughts regarding peer relationships in early childhood.  It seems now, with these budding first grade friendships forever frozen, a respectful tribute of sorts.

There are three main considerations of peer relationships in elementary school as they apply to students with autism spectrum disorder (ASD).  First, that they are a necessary part of social-emotional development and mental health.  Second, that they will exist, but perhaps to a differing depth and breadth than their neurotypical (NT) peers will experience.  And finally, that they should be specifically developed and nurtured for mutual benefit.

As we look at the determinants of quality of life for adults living with autism, we notice that connections in the community are key.  Jobs, recreational opportunities, and social/familial relationships help us, whether we have typically-wired brains or not.  Learning to form and derive enjoyment from these connections starts in elementary school.  Tony Attwood, author of The Complete Guide to Asperger's Syndrome and a world-renowned clinical psychologist specializing in the treatment of individuals with ASD, notes that the ages of 4 to 6 years are critical for motivating these early friendship skills.  While social impairment is a diagnostic criteria for an ASD diagnosis, it doesn't mean that relationships are less important to the development of someone with autism.  It helps to understand, however, that these relationships may look different than those between NT peers.

Many individuals with autism prefer to interact with people either younger or much older than they.  In the case of elementary school students, the 3rd grader may gravitate toward 1st graders on the playground; or the 2nd grader may bond with his speech-language pathologist versus his classmate.  In the case of the former, delayed social maturity may play a role, as well as a sense of competence around less-complicated unwritten social rules.  For the student who prefers to socialize with adults, contributing factors could include a penchant for specialized conversational topics (i.e., migratory patterns of birds or dinosaurs of the Mesozoic Era), an acceptance or level of patience not experienced among peers, or a gravitation to the familiar (in the instance of children receiving many hours per week of adult-driven therapies and interventions).

Whatever those early connections are, channel them into platforms for generalizing positive social behaviors.  Speech therapists can use the foundations of these friendships to seed new social skills, such as turn taking in conversation or noticing tone of voice and body language.  Since words only account for (at best) a third of our communication, "speech" skills are inextricably tied to these social nuances so elusive to our friends with autism.

So maybe elementary school-aged children with autism might not have the quantity of friends their NT classmates have, but the quality of their early friendships is immeasurable.  They are the building blocks of critical social development, eventually contributing toward peer acceptance and positive self-image.

And we should not ignore the benefit that students with typical brain development derive from these opportunities to learn, relate, and grow.  One of my son's very first friends was able to decrease his own school-related anxiety by focusing on the help he provided to my boy.  Studies on Peer-Mediated Instruction and Intervention programs have demonstrated that specifically-trained mentors achieve better academically and feel more fulfilled because of their engagement in these relationships.  They become less self-absorbed and more empathetic.  They develop leadership skills and flexibility -- traits which will eventually make them more employable, as well.

Ultimately, children with autism should have a spectrum of friends: ones they can share their special interests with, ones who help them be the best social being they can be by gently pushing development of new skills, ones they can feel competent with at their social-emotional level, and ones who accept them right where they're at, regardless of outward manifestations of their autism.  Are we as NTs any different in our need for a diverse friend base?

Autism and Peer Relationships in Early Childhood

In the state of Wisconsin, the average age for receiving an autism spectrum diagnosis is 4-1/2 years old (CDC, 2012).  By this time, while most parents report that their child later diagnosed with ASD exhibited symptoms before seeking a medical diagnosis, children should already have been receiving services through Birth to 3.  That being the case, many of these children transition into their school district's Early Childhood program (age 3-5, or kindergarten), where, hopefully, they have access to typically-developing peers.

In the case of my now adolescent children with autism, we are fortunate enough to live in a resource-rich area where my intentions to maximize their social and educational experiences were realized without extraordinary effort.  Sure, I had to serve as my daughter's "educational assistant" in a private day care when she was 3 years old because she wasn't yet toilet trained and required additional social support, but it provided opportunities for me as a mother to recognize what developmental areas required extra attention and focus on those in- and outside the day care setting.

One of those areas for both of my children was their relationship development.  When I was asked by neuropsychologists during their diagnostic interviews how many "friends" my children had, I guess I wasn't so sure of the definition.  It was loosely described to me during the evaluation process as particular same-aged peers whose company they sought out or enjoyed.  Having no "normal" baseline before I observed my children with their classmates, I assumed the parallel play my 4-year-olds engaged in was age-appropriate.  But by the definition of friendship in a recent textbook I was reviewing in preparation for a guest lecture, my children with ASD had no friends.

However, I think we need to measure and define friendship a little differently for our students with ASD.  If we can base friendships on shared interests, mutual admiration, and general good will (versus willingness to share, the ability to enter play situations, and solve conflicts, for example), then it will be easier to pair typically-developing students with their classmates with autism.  Students with ASD may be unskilled at initiating social interactions, but that proclivity my 3-year-old daughter had to pet her classmate's long, silky hair both satisfied a sensory input desire and served as a greeting.  My 4-year-old son's proximal babbling with eye contact demonstrated to his classmate that he wanted to communicate with him.  These, in my opinion, are the seeds of relationships and should be celebrated as such.

So the next time you see a 3- to 5-year-old with autism in the vicinity of neurotypical peers, encourage the budding healthy interactions without concern about the quality or duration.  Keep rewarding efforts to engage peers while teaching social understanding and motivating students with ASD.  The baby steps you take in these early years are the training exercises for the races they'll run as they get into intermediate elementary education and beyond.

What precious "friendship skills" have you noticed in your young students with autism?

Giving Tuesday

Have you heard of this concept?  There's Black Friday the day after Thanksgiving which generally helps big box retail; and Small Business Saturday follows that, whereby consumers are encouraged to "shop small" and patronize their local retailers.  Today is Cyber Monday, and I'm sure many of you are postponing reading this week's blog to get all the online deals.

Tomorrow is an important day for autism awareness, acceptance, and empathy.  At least it is to us at Good Friend.  Giving Tuesday is about looking at the bigger picture -- drawing back from the sales and the hype and considering how you want to make a difference.  How do you want to give?  Do you want to give of your time to your favorite cause?  Do you want to donate on behalf of someone on your gift list?  Do you want to purchase something that supports your beliefs?  Do you want to share your priorities?

Good Friend is drawing very near to reaching directly its 20,000th person with its awareness-acceptance-empathy message.  This has happened because you have given.  If you've purchased a DVD, you are both sharing the message with others through the use of the peer sensitivity film and helping us to teach students to be good friends to their classmates with autism.

So on this Giving Tuesday, please honor our 501(c)(3) nonprofit: Buy a t-shirt for your favorite service provider or relative, make a donation in honor of a loved one with autism, or share our mission with your Facebook and twitter contacts.  We are so thankful for your support!