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!

I speak autism!

As part of Good Friend's Peer Sensitivity Workshops, Denise and I conduct phone interviews with the primary caregiver and most relevant staff member so we can get an understanding of how our student subject "ticks".  We have a prescribed form we go through, typing answers and sometimes delving deeper into comments as we go along.  I often find myself chuckling at many of the described behaviors.  Clearly, the interviewee doesn't find these eccentricities nearly as charming as I do.  As a result, I can sense the parent's or teacher's confusion on the other end of the call about my lighthearted giggle.  Sometimes, I have to explain.

I have two children with ASD, ages 13 and 11.  And I've met dozens and dozens of individuals with autism through my experiences, both personal and professional.  As I make connections about these amazing people and consider the factors driving many of their behaviors (preferences, aversions, repetitive acts, etc.), I can't help but feel blessed to know them and understand the meaning of these behaviors.

For example, I've heard about so many children with ASD, boys in particular, who do not like babies.  I've come to understand that babies present a host of unpredictable sensory experiences (i.e., loud crying, smelly spit-up and messy diapers) that make being in their presence anxiety-provoking for these guys.  This is true for my own son, who has several young cousins -- many of whom have gone rather "unappreciated" by my boy until, perhaps as preschoolers, they're ready to show some interest in his favorite topics.  So these moments of his endearingly awkward interactions flash before my eyes as I'm talking to these teachers and parents, and I have to smile.  Sometimes out loud.

But making connections and understanding how people with autism are wired doesn't mean that autism is my native language.  I speak it because of cultural immersion, but I wasn't born with autism in my body.  So while this immersion makes me fluent in autism, it doesn't make a true expert.  Certainly, I can interpret autism for neuro-typicals who don't speak the language themselves, but the best way to understand autism is to interact with the experts.

Not sure why your person with autism behaves in a specific way?  ASK (politely in a moment of calm and clarity)!  You might be surprised about the insight you gain and the level of self-awareness your person has.  Little or no reliable means of communication yet?  Play detective!  The Iceberg Model of Autism (Eric Schopler, TEACCH, 1994) reminds us that the observable behavior is just the tip of the iceberg, and what's beneath those acts is generally a combination of environmental contributors (sensory perception, social or processing differences, etc.).  Listen actively.

What discoveries have you made as you've learned the language and culture of autism?

The Right Tools

Last week, I had four enormous spruce trees removed from my yard.  The work crew arrived at 9 a.m. and by 2 p.m., all that remained were four piles of fragrant, shredded mulch.  Even if my husband and I possessed the skill and knowledge these gentlemen had, there's no way we could have done the same job.  We didn't have the right tools.  These guys had enormous chainsaws and bow saws and stump grinders and cranes.  They had cherry pickers and wood chippers and hand trucks.  And muscles -- big ones.

Anyone who works with tools, whether in a kitchen or a garage or at a desk in front of a computer, will tell you how important it is to have the right tool for the right job.  Wrong tools for the right job and vice versa will be useless.  Why do we think this is any different for our children?

Our children need tools for their social-emotional toolbox.  Noticing the social impairments in children on the autism spectrum, caregivers developed social skills training.  We were equipping students with autism with tools we assumed they could use with their typically-developing peers.  In some cases, it was a case of right tool, wrong job; we were equipping students for the job that comes after social understanding.  It was kind of like handing over the chisel before we gave them the mallet.  And they looked at the block of stone, glanced at the chisel and thought, "Why do I need this again?"

Somehow, we missed the importance of putting the tools of awareness and acceptance in our typically-developing kids' toolboxes also.  We sent them to school with their pencils and paper and crayons in the backpack without explaining the differences between learners, and how important it was to accept each of their classmates regardless of those differences.  It didn't seem to matter much when the kindergarteners walked away wide-eyed and turtle-shelled with their big backpacks.  Even in first grade, they interacted mostly with whomever they were near.  And we assumed they just understood their classmates with differently-wired brains.

Boy, were we wrong.

They have all sorts of problems to solve, but no tools to get the job done.  Without the right tools, they'll chip away at the block of stone without much skill or finesse, and we'll wonder why they've been unable to produce a masterpiece.  They did the best they had with the tools we provided.  Had we put the right tools in their toolboxes and showed them what each was for (think Peer-Mediated Instruction and Intervention), imagine what the finished result might have been!

I think it would have looked like meaningful inclusion.  Let Good Friend help you equip your students for an inclusive classroom in the 2012-'13 school year by scheduling staff and student services to take place immediately in the fall.  Contact me or Denise before school's out for the summer!

Different ≠ Deficient

Rodin's "The Thinker" taken at the Rodin museum in Paris. Copyright © 2007-2008 James H. Linder

The concrete thinker in every human wants to quantify things.  How many?  How much?  What's the difference between them?  And it's that last question that tends to get us into a pickle.  We want to assign a number to demonstrate the difference -- even when it's not a quantitative difference.  And even if it's a qualitative difference, we concrete thinkers want to have a handle on the disparity.

When it comes to testing and analysis, as in the realm of qualifying for special education services, we have to be specific.  What is the age equivalence for the expressive/receptive language ability?  What is the difference between the child's actual age and the developmental communication ability?  If the standard deviation is at least 1.75 below, then (in the State of Wisconsin) the student may qualify for speech-language services through an IEP.  If not, well ...

Collecting data and searching for patterns is an excellent way to track progress (or lack thereof).  We write quantifiable goals in IEPs so we can tell whether our means for achieving our goal are successful and whether or not we've satisfied the goal.

So I suppose I shouldn't be so ruffled when people look at children with autism and try to quantify their differences.  In some cases, that's warranted for service entitlement.  But as caretakers, we have to stop looking at different as being equal to deficient.  For if different < normal, then it's okay to treat different < average.  When we follow that math equation, different = deficient.  We certainly can't say different = average (although we are all "different" by definition), because then we run the risk of eliminating supports that different requires.  Have I confused you thoroughly yet?

The point is this.  Yes, the autistic brain is different than the neuro-typical (NT) brain.  Its differences lead to altered ways of experiencing the world.  And in order for that experience to be accepted into society at large, both sides of the equation need to make accommodations.  But making accommodations isn't an intrinsically bad thing.  We all make accommodations ourselves and for our loved ones (sharing workloads by managing strengths, using calendars to keep track of appointments, etc.).

If we truly want individuals with autism to be accepted by their (NT) peers, we need to stop measuring those differences and displaying the disparity.  We need to be less concerned about the appearance of difference in inclusive settings and downgrade the importance of blending with NT peers.  Make the accommodations for the student with different learning abilities and explain their necessity to peers in teachable moments as appropriate.  Transparency is a value increasingly embraced in our culture.  If we are hiding difference, we are harboring the sentiment that difference is bad.  And when we allow that sentiment to cloud our thinking, then we perpetuate the harmful untruth that people with autism are lesser than their NT peers.

Think about it.

Be Inspired!

From Dictionary.com

in·spire

  

1.

to fill with an animating, quickening, or exalting influence: His courage inspired his followers.

2.

to produce or arouse (a feeling, thought, etc.): to inspire confidence in others.

3.

to fill or affect with a specified feeling, thought, etc.: to inspire a person with distrust.

4.

to influence or impel: Competition inspired her to greater efforts.

5.

to animate, as an influence, feeling, thought, or the like, does: They were inspired by a belief in a better future.

What inspires you?  You might answer my question with the question, "To do what?" To get out of bed! To go to work! To do your best at school! To make a new friend!  Inspiration goes beyond motivation.  We might be motivated to get out of bed because we have to ready ourselves for an appointment or obligation.  Our motivation to go to work may come from the promised paycheck.  But inspiration is something else -- something more.  When you look at the etymology of inspire, you get a sense of a breathing in of spirit.  So the life-giving air in your lungs to do well at school might come from an enlightened teacher.  And the breezy spirit of friendship might have blown in your next BFF.

I can tell you unequivocally that I am inspired by my children with autism to do my job tirelessly and with fresh air daily.  I wonder how many neuro-typical people realize how hard my children with differently-wired brains work to do so many things that come effortlessly to them: use and interpret body language, tone of voice, and comedic timing; initiate and maintain social relationships; process and respond appropriately to verbal language.  I could look at them and despair; but instead, I look at them and breathe deeply.

Look at your person with autism today and be inspired to do better -- for him or her and for yourself.  (And if you don't have a person with autism, you won't have to look too hard.  If you know 100 people, you likely are already connected.)