El Deafo by Cece Bell

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by Cece Bell

I’m not usually a fan of graphic novels, and I didn’t realize that this book is a graphic novel – well, actually, memoir – until after I bought it and cracked it open, at which time I groaned a little because it’s just not a format that generally appeals to me.  However, I couldn’t help but scan the first couple of pages, and I was quickly taken in.

As I said, this is a memoir in graphic novel form, recounting the author’s childhood.  Born hearing, when she was four years old Bell contracted meningitis, and as a result lost her hearing.  Required to wearing hearing aids, which back then (the mid-1970s) were comprised of ear pieces with cords attached to a device worn on the chest, Cece attends kindergarten in a classroom of other kids like her, all of them hearing impaired.  Kindergarten is the last time she attends school with other deaf or hearing impaired kids.  Soon her family moves to a new house in a new town, and Cece goes to the neighborhood school with all the other neighborhood kids.  Like most kids, what she wants most is to have friends and to fit in, but she always feels different because of her hearing aid.  To make matters worse, her small hearing aid is eventually upgraded to the Phonic Ear, a super-duper hearing aid that is even more conspicuous than the smaller one she had gotten used to wearing.  With the Phonic Ear, however, she discovers a super power: because it is paired with a microphone worn by the teacher, Cece discovers that she is able to hear the teacher wherever she is in the entire school building!  This results in some hilarity, especially when she hears her teacher using the bathroom.  Secretly dubbing her alter ego “El Deafo,” Cece wonders if she can harness her super powers to make friends.

I really enjoyed this book!  Honest without being sentimental, and told with a great deal of humor, it still reveals the loneliness felt by anyone who has grown up “different.”  Spunky Cece is a jewel of a girl.

One of my daughters read it after I did, in one day, and my other kids are lining up to read it.  A treat of a book for adults and kids alike.

Supporting Positive Behavior in Children and Teens with Down Syndrome by David Stein, Psy.D.

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by David Stein, Psy.D.

I came across this book purely by chance when I saw a friend post a photo of it on Instagram.  The title struck me, and I immediately ordered a copy from Amazon.

I’ll start by saying that we have dealt with behavior issues with Finn, our 8-year old son with Ds, for a long time.  Without going into a lot of detail, because this probably isn’t the best forum for that, I will say that the negative behaviors he often exhibits range from mildly annoying to disruptive and obnoxious, to sometimes harmful, and they’ve impacted our family in various big and small ways.  As time has gone on, I have found myself more and more frustrated and disheartened.  I’ve also felt pretty isolated, as it’s difficult to talk openly about your child’s behavior challenges in what is a climate of competitive and judgmental parenting, and when there is already stigma attached to your child because he or she is disabled, it’s even more difficult to talk about.  I have felt isolated even among other parents of kids with Ds or other disabilities who only seem to talk about their kids’ achievements and sunny dispositions.  What’s wrong with my kid that he’s so obnoxious and uncooperative so much of the time?  What’s wrong with me as a parent?  These questions play on a loop in my head.

Supporting Positive Behavior in Children and Teens with Down Syndrome has managed to allay some of the feelings of isolation, and it’s helped me to understand where Finn’s negative behaviors come from, and how to effectively minimize them.  It boils down to one basic, common sense fact, and that is that the more attention that is given in reaction to a behavior, the more that behavior will likely be reinforced.  The key is to determine which behaviors are harmful or destructive, and respond to those swiftly but unemotionally, and ignore the rest.  This doesn’t mean “letting them get away with it”; it means, taking away the motivation (most often, attention seeking) to engage in those behaviors.  Other important strategies outlined by Dr. Stein include the use of “token economies,” picture charts of expected behaviors (because kids with Ds are typically a lot stronger visual learners than verbal), and social stories – in other words, building incentives and motivation (like positive attention) into behaviors we want to see more of.

Of course, none of this is really brand new stuff, and to some degree, it’s effective behavior management for all kids, neurotypical or not.  I’ve always known on some level that reacting strongly to negative behavior in any of my kids doesn’t tend to do much good – it just lets me blow off steam.  But seeing all of this written out in a logical and compassionate way has been very eye-opening.  And it’s also helped to read that the behaviors Finn exhibits are extremely common in kids with Ds – so I’m not alone.

As I was reading this book – which at just over 130 pages isn’t long or overwhelming – we had a few family pow-wows to talk about strategies we can all use to encourage more positive behavior from Finn.  Finn’s siblings are totally on board, and we’ve all been making a great deal of effort to see Finn’s behaviors in a different light and respond to them more thoughtfully.  We are already seeing changes.  Finn in some ways seems to be onto us; he’s not getting the strong reactions he’s used to, so he’s upping the ante in some ways by behaving even more obnoxiously in an effort to get a reaction.  However, these episodes seem to be petering out a lot quicker without our reactions to fuel them.

I wish I had had this book a long time ago (although it was only published in 2016).  I wish Finn’s “team” had had this book when he was still in school.  I encourage anyone who is a parent, teacher, or caregiver to a child with Down syndrome to read this book.