Great opportunity for siblings of students with neurological differences!

For more than six years, Good Friend has been spreading its message about autism awareness, acceptance, and empathy to those who surround students with autism spectrum disorder (ASD).  Along the way, and within co-founder Denise Schamens' own family, the unique challenges that the siblings of children with ASD face have become more visible to us as an organization.  That made us especially grateful to the Autism Society of Southeastern Wisconsin for hosting a Sibshop facilitator training event  by Don Meyer, director of the Sibling Support Project, last spring in Milwaukee.

Speaker and author Don Meyer is a pioneer in the sibling movement; he has been at its forefront for more than 25 years.  He recognized the unique concerns and strengths of siblings of children with special needs ("sibs") and decided to do something to support them.  Siblings benefit, he says, from getting to know other sibs, taking in some information, being able to ask questions, and sharing the experience – good, bad or indifferent.

Sibshops offers a model intervention for sibling support, learning and fun.  It recognizes and reinforces a strengths-based approach. It also promotes relationship building between sibs through a variety of games and activities.  They reflect a belief that brothers and sisters have much to offer one another – if they are given a chance.

Sibshops are good for the soul.  They enrich the lives of the group leaders, sibling participants, and families as a whole.  They heighten public awareness that sibs matter and should not be an afterthought when it comes to supporting families of people with disabilities.

Good Friend is proud to announce our collaborative effort with Carroll University to provide Sibshops to sibs ages 8-13, who have a brother or sister with neurologically-based differences (ASD, cognitive disability, mental health challenges, etc.).  This is not to say that other disabilities aren't equally worthy of Sibshops, but that Good Friend's expertise lies in this area.

Events for the 2013-'14 school year will be held at the beautiful Carroll University Center for Graduate Studies, located at 2140 Davidson Rd., Waukesha, Wis.  Dates are Saturday mornings, starting in October: Oct. 5, Nov. 2, Dec. 7, Jan. 11, Feb. 1, (no March event) April 5, and May 3.  Each workshop will be from 9:00 a.m. to 12 noon, with a snack provided.  Registration fee is $15 per workshop or three for $30.  (In case of financial hardship that makes the registration fee prohibitive, please let us know.)

Please contact Denise Schamens for more info or to register for one or multiple dates!

Our mission power words are "Awareness Acceptance Empathy".  We teach peers in the schools to be good friends to someone with autism (and/or another brain-based disability).  Now it's time to be Good Friends to the sibs!  By educating, supporting and fostering friendships, we hope to help these precious children in their lifelong journey as Super Siblings!

We leave you with some insight from Super Sibs, as captured in Don Meyers' The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs (Woodbine House, 2005):

What life lesson have you learned from being a sib?

• “To be understanding of other people’s difficulties, and have empathy for those who – through no fault of their own – are faced with enormous challenges, and to value each person’s unique attributes.” (Jenna H., 17)
• “That no matter what I do he will always be there for me.  He’s my special light in the darkness; there when all other lights go out.” (Kathryn C., 14)

What’s the toughest thing about being a sib?

• “Having to worry about the future of your sib.”  (Melisandre P., 14)
• “I think it’s watching her fail.  The look in her eyes would send a full-grown man into tears.  Or her being denied opportunities that other kids have.” (Erin G., 14)
• “Knowing that I will be able to do certain things someday that my sib probably won’t get to experience, like going to college, driving, or even living on my own.” (Emily P., 13)

So we're going on vacation ...

Especially when families have school-aged children, summers are a time for travel.  It takes extra bravery, flexibility, and planning if that family includes a child with autism, and there have been some key considerations I've taken as a mom that have reduced behavioral turbulence, so to speak.

1. You know that picture you have in your head of everyone doing the same thing at the same time and loving it?  Do yourself a favor.  Delete it (or at least be willing to Photoshop before publishing).  I used to look longingly at those families who were capable of creating and maintaining an elaborate itinerary.  But having tried that once, I realized that would not work for our family.  Flexibility is first.  Laughing at a National Lampoon's Vacation film before leaving can't hurt.

   

   Royalty Free Stock Photo: HAPPY FAMILY by Sharpnose

2. Be reasonable in your expectations.  I know all the experts talk about there being a Theory of Mind problem associated with autism, but I think Paula Kluth put it best when she insisted the perspective-taking problem lies with us neurotypicals.  How much sustained attention does your child have at home or school, where, presumably, there are familiar people and environments to promote such attention?  We assume that our vacation plans will be engaging, but they might just be overwhelming.  Are your child's basic needs (hunger, thirst, toileting, temperature regulation) being compromised?  Having favorite snacks and beverages on hand can help.
3. When you notice signs of distress in your child with autism, don't "Keep Calm and Carry On".  Fall back (while remaining calm).  And know where your "safe" or "soothing" places are ahead of time.  Believe it or not, some big theme parks have recognized the need for such spaces and will let you know where those are if you inquire.  I have noticed that if I've provided a space and time for decompression, my children (even as young as age 3) have accessed their built-in coping strategies.  Have a favorite stress reliever, like a comfort item, stress ball, or other fidget on hand at all times.
4. Put on your thick skin.  Your child with autism's coping strategies will look different than his neurotypical peers'.  (My son paces and makes sound effect noises when he retreats into his creative story-writing imagination.  My daughter lines up toys or draws, flapping her hands and humming as she imagines a much bigger scene than she perceives in front of her with her eyes.)  And when your loved one with autism has that meltdown, you'll get some stares.  This is a good time to Keep Calm and Carry On.
5. Be willing to divide and conquer.  I'm going to bring this concept full-circle.  While you might not convince everyone in the family that an activity or venue is worth enjoying, give yourself and your family the freedom and permission to find joy in separate places or ways.  If it's bringing an electronic device and headphones to a wedding, make that adaptation.  If it's finding a petting zoo  with dad and skipping the beach with mom, do it.  Getting that happy, smiling, all-together family photo might be tough.  But you'll get lots of individual photos of contentment.  And that's beautiful, too.

Autism Speaks has a great list of books and web-based resources.  What tips and tricks can you offer vacation-planning families that include children with autism?

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.

THINK: 50 Cent and Autism

If the R-word campaign and Judy Endow's The Power of Words have taught us anything, it's that words matter.  What comes out of our mouths and/or off of our typing fingertips has the power to hurt or heal, to build up or burn down.  While Good Friend has spent the last five years educating some 17,000 students and adults about the importance of speaking positively about autism and those who experience life through its lens, there are those who continue to remain ignorant about this neurobiological developmental disorder and make insensitive comments.

Such comments sting in a far more reactive way when they're inflicted by celebrities.  For better or for worse, our society is acutely aware of media moguls in various industries, including music, film, and sports.  Rapper 50 Cent, no stranger to the spotlight, got particularly ugly with a threatening Twitter follower last week. According to a Huffington Post article, his response was "yeah just saw your picture fool you look autistic." And, heaping burning coals on his own head, tweeted, "I dont want no special ed kids on my time line follow some body else".

This brought to mind a favorite mantra.

Many 50 Cent fans insisted he was only trying to be funny.  It was the furthest thing from comical or entertaining.  If great power (or influence) comes with great responsibility, then we have to THINK before we speak.  If it isn't True, Helpful, Inspiring, Necessary, and/or Kind, then we should, as I often tell my son when he gets into his self-regulatory scripted talk at inappropriate times, keep it in our heads.

While 50 Cent took his nasty tweets down at the emphatic request of autism activist and mother Holly Robinson Peete, it took the public outcry of the autism and special needs community, plus those who support common decency, to get him to offer an apology.  Thousands of pictures with hashtag #thisiswhatautismlookslike flooded Twitterverse, apparently prompting his Sunday morning olive branch extension.

Let's hope we all THINK before we speak.  Because, for those of us who have reliable spoken language, just because we can speak, doesn't mean we should.