Unique Voices

   

     Two of my favorite recent middle grade reads feature main characters with unique outlooks on life.  

     In Wonder, by RJ Palachio, we meet August Pullman, who is navigating life from behind the mask of severe cranio-facial abnormalities.

     In Mockingbird by Kathryn Erskine, we're introduced to a Caitlin, a fiesty young girl with Asperger's Syndrome who is dealing with a tragic loss.  

     I appreciate both of these characters for their unique voices, and for bringing awareness and sensitivity to people living with conditions that are challenging, but enriching at the same time.

     Immediately after I finished Mockingbird, I began asking my friends who are parenting children with Asperger's Syndrome if they had read the book (none have yet).  I'm always so curious to know, did the author get this right?  The stories resonated with me, but I'm not there, on the front lines, entrenched in the day-to-day world of Apserger's Syndrome.  In fact, one of my friends had to point out (and has been so patient in trying to explain this to me) that her son actually has PDD-NOS, which is on the same "end" of the Autism Spectrum as Asperger's, but is in fact a different diagnosis altogether. 

     I would love to explore a character with unique challenges, but I have a great fear that I would "get it wrong" and offend the very people I was trying to illuminate.  In fact, I often feel like I'm "getting it wrong" in my everyday life as well.  

     That is why I really appreciated a recent article by Maria Lin:  7 Things You Don't Know about a Special Needs Parent.  I'm always trying to "know better and do better" by my friends who are parenting kids with special needs.  Even as write these words I'm thinking, "is that the way I'm supposed to say it?" I want to be helpful and encouraging, but a lot of the time I feel like a bumbling idiot. 

     "Your daughter didn't want to do the swim lesson?" I asked a woman sitting next to me on the pool sidelines.  Her daughter, playing nearby, looked close to my son's age, and there was plenty of room in the class.  

     "She'd love to," was the answer, "but they don't have the capacity to deal with her specifically."

     Blank stare; I'm not getting it.

     "She's blind."

     Panic-panic-panic- don't say anything stupid!

    I'm not exactly sure what my response was (I think I asked something like, "Are there other opportunities for her to swim if she wants to?").  I must not have screwed it up too badly, as I'm still friends with that woman today.  

     If I ever do write a main character with a disorder, syndrome, challenge, or special need, (again, wondering, which one is the 'right' word?) I hope I do them justice, highlighting the person they are and the uniqueness of their gifts.  It would be devastating to take on a job like that and screw it up.  

     I also hope I can do better in my everyday life.   In fact, in response to Ms.  Lin, here are:

9 Things Parents of Special Needs Kids Should Know About Me:

     

1.  I am ignorant.  I don't mean to be, I just am!  From the minute you got your child's diagnosis, you have probably spent hours reading everything ever written about their particular condition.  You have become an expert, while I have maybe heard of, or read a few magazine articles on, the topic.  I want to learn - please be patient and tell me what I need to know.  In the meantime....

2.  I am sorry!  I do not mean to offend you, ever.  But it happens.  I know first hand that it does. I say things that are insensitive, I stumble over my words, I stare too long, or I don't look closely enough.  Even when I'm honestly trying to be sensitive, I don't always do my best (see #1).  So, for the record, I'd like to say, "I'm sorry!"

3.  I am honored when you let me help with your child.  This is a big deal.  It means you trust me to do a really important and difficult thing.  I want to give you a break, and spending time with your child is probably the best education I can get.  So, thank you for sharing; it means a lot!

4.  I'm an idiot. (See #1 and #2).  Sometimes I complain about my typically developing kids in front of you, because as a mom, that's what I do.  You are my mom friend, and I forget that what I'm complaining about could be the very behavior you wish your child was able to exhibit.  (#2!)

5.  I think about you.  Even when I don't have the courage or time to call, please know I am thinking about you.  I am sending you prayers, good wishes, and positive vibes.  You're on my mind when I'm having bad days, and when I'm having good days.  I don't forget about your daily struggles, but I could definitely do a better job expressing it.

6.  I am impressed by you.  You are a dedicated, passionate advocate!  I admire your strength and determination.  I watch you going the extra mile for your child, again and again, and I learn how to be a better parent myself.  You rock!

7.  I want your child to succeed.  When you celebrate your child's milestones, I am cheering right alongside you!  I hope the best for your child, and I want to live in a world where they are accepted and cherished for who they are.  

8.  I want my kids to be friends with your kid.  Your child enriches my child's life.  Period.  Thank you for spending time with us, so my children won't be as (#1) as me when they grow up.

9.  I need to do better by you.  Thank you for informing me, educating me, and being patient with me.  I will try to be less boneheaded and more sensitive.  I need to be better about helping you on this journey:  you and your child deserve my best efforts!

Friends, please feel free to comment here or in person if I ever need to be "set right."  I want to learn!