Monday, January 21, 2013

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!

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