Not Always Happy by Kari Wagner-Peck

51sHRGqjqXL._SX331_BO1,204,203,200_Not Always Happy

by Kari Wagner-Peck

I stopped reading memoirs about raising a child with Down syndrome awhile back mainly, I think, because they all started seeming the same. Most follow a fairly predictable trajectory: a child is born with Down syndrome, there is much grief, then acceptance, and finally celebration. It’s not that there is anything wrong with this storyline (which, if I’m honest, fits my own storyline with regard to having my own child with Down syndrome), it’s just that after a time, I had read enough of them. So when I saw mention of Not Always Happy – probably on Facebook, I can’t really remember for sure – and that it was funny, my interest was piqued.

Continue reading here.

El Deafo by Cece Bell

41v58xl9-ll-_sx332_bo1204203200_El Deafo

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.

Read my review in its entirety here.

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

51tfcynwrslSupporting Positive Behavior in Children and Teens with Down Syndrome

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.

Read my review in its entirety here.

From My Mother by Darcy Leech

3d-book-coverFrom My Mother

by Darcy Leech

When Darcy Leech was three years old, her baby brother was born, and the course of her life and that of her family was changed forever. Dustin was diagnosed with congenital myotonic muscular dystrophy – or MMD – inherited from his and Darcy’s mother, who didn’t know that she had the adult onset kind of MMD until then. MMD is terminal – it causes progressive weakening of the muscles and the body until it can no longer support life, and there is no cure.

Read more, including an interview with the author, here.

The Memory Keeper’s Daughter by Kim Edwards

Memory_Keepers_Daughter The Memory Keeper’s Daughter: A Novel

by Kim Edwards

It’s hard to believe that this novel was originally published ten years ago already. The first time I read it was in 2006 or 2007 – I can’t remember which, but I was pregnant at the time with my sixth baby who, unbeknownst to me at the time, would be born in the summer of 2008 with Down syndrome. I’ve wanted to reread it ever since Finn was born, wondering how my take on the story might be changed by my own personal experiences …

Read the rest here.

The North Side of Down by Nancy Bailey and Amanda Bailey

Unknown The North Side of Down: A True Story of Two Sisters

by Nancy Bailey and Amanda Bailey

Memoirs written by parents about raising children with Down syndrome are not hard to come by. This memoir offers a unique perspective, as it’s written by a sibling rather than a parent, and it centers around an adult with Down syndrome rather than the usual stories about babies and kids with Down syndrome . . .

Read more here.

Out of My Mind by Sharon Draper

6609765 Out of My Mind
by Sharon Draper

Sigh.

After having numerous friends (mainly parents of children with disabilities) rave about this book, I read it with much anticipation.  I kept waiting for it to grab me, but it never really did.  It’s safe to assume that I’m in the minority in that I did not love this book.

Written for the preteen/adolescent set, it’s a fictional narrative by an eleven-year old girl by the name of Melody who is profoundly disabled by cerebral palsy.

“Words.

I’m surrounded by thousands of words.  Maybe millions.

Cathedral.  Mayonnaise.  Pomegranate.

Mississippi.  Neapolitan.  Hippopotamus.

Silky.  Terrifying.  Iridescent.

Tickle.  Sneeze.  Wish.  Worry.

Words have always swirled around me like snowflakes – each one delicate and different, each one melting untouched in my hands.

Deep within me, words pile up in huge drifts.  Mountains of phrases and sentences and connected ideas.  Clever expressions.  Jokes.  Love songs . . . .

I have never spoken one single word.  I am almost eleven years old.”

Melody is wheelchair bound and not only can she not speak, she cannot feed herself or dress herself or bathe herself.  She is unable to use the bathroom by herself.  Most people assume because of her physical limitations and absence of speech that she must also have severe mental limitations, and she spends her days in a special ed classroom where a procession of teachers with low expectations parade in and out.

Melody is bored and frustrated.  She wants to fit in.  She wants to have friends.  She wants to say what’s on her mind, but her words are all stuck inside her mind – until she acquires a speech device that finally allows her to express herself.  It’s a dream come true – but will it change Melody’s life and people’s perceptions about her in the way she hopes?

I was tempted to call it a “feel good story” until about three-fourths of the way through.  Though it’s written for kids in the 9 – 12 age group, I appreciated the fact that it’s not all wrapped up with a pretty bow at the end.

That said, there were several things that bother me about the story: most of the kids that populate the book are downright obnoxious, and it was difficult to like any of them.  I suppose this was at least partly intentional on the author’s part in order to create a “Melody vs. The World” dichotomy.  There is one girl who sort of befriends Melody, who is clearly conflicted, and she was probably the most likeable and believable character.  It felt like the author was unsure of the era in which the story takes place – she has Wiis and iTunes existing alongside MySpace, which as far as I know has been dead for years.  While not a major thing, it was a distraction.  The kids used “hip” lingo that I’ve never heard (do kids really say, “That’s so tight!” or “That’s what’s up!“?  Maybe I’m out of touch – or maybe it’s a geographical thing – none of my kids have ever used those phrases), so that felt unrealistic.  The author does not seem to have a grasp of the difference between “inclusion” and “mainstreaming” in the realm of school, and nothing seems to be decided by way of IEPs.  Also, aides for disabled students are really awesome and involved and  attached, almost members of the family.  Yeah, right.  Not that there aren’t good aides out there, but I thought the author’s portrayal – especially of Melody’s aide – was a pretty major departure from reality.

Oh!  And the classmate with Down syndrome!  I’m convinced the author read something with a title like, “Stereotypical Down Syndrome Traits.”  Always happy.  Hugs indiscriminately.  Possesses sixth sense about other people’s moods and emotions.  Gag.

What bothered me most of all, however, was the same old valuing of people based on intelligence.  Melody, you see, while profoundly physically disabled, is pretty much a genius.  Even she says that she hates the word “retard.”  I got the distinct feeling it wasn’t because she felt it was mean or derogatory or marginalizing, but rather because she’s not “retarded.”  “She may be severely crippled, but at least she’s not retarded!” the author seemed to be saying.  I’m so tired of this message – so tired of our society’s insistence on valuing people based on intelligence and potential to achieve, rather than on humanity.

There was also the fact that Melody’s parents, while loving, fierce advocates, seem to have no qualms about expressing – to Melody! – that, yeah, she’s defective, broken, messed up.  When her mom is expecting another baby, everyone is worried that the new baby will also have CP.  “We love you, Melody, but we sure hope and pray that this new baby isn’t screwed up like you,” they pretty much tell her.

It was frustrating and disheartening.

I can see the pluses of this book for the age group it’s intended for – by allowing kids a glimpse into the mind of a child with disabilities, it might serve to demystify disability to an extent and foster compassion.  However, I feel that the positive impact it could have is mostly canceled out by the negative messages about disability.  I’m not sure I would even recommend this book to my own kids, who have a sibling with a disability.

[Bracing myself for comments expressing outrage.]

Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee

Unknown Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion
by Sandra Assimotos McElwee

Unlike the countless other memoirs written and published about raising a child with Down syndrome – woman gives birth; woman learns baby has Down syndrome; woman weeps, rails, and wrings hands; woman discovers acceptance and joy in having a child with Down syndrome (I’m not poking fun – this is very much my own story) – Who’s the Slow Learner is a chronicle of the author’s son’s schooling from preschool through high school graduation.  This is a sorely needed book in the landscape of disability and education.

Sandra McElwee recounts her determination to see her son Sean, an only child, fully included in general education classrooms.  A tenacious advocate, McElwee found what a lot of us parents are finding: that inclusion is much easier to accomplish in elementary school than it is in junior high and high school.  From kindergarten through sixth grade, Sean was accepted in his neighborhood public school, and battles for inclusion on his behalf were minimal.  The benefits of inclusion were clear: self-esteem, peer modeling, a sense of community and belonging, and far more learning opportunities for Sean, and lessons in compassion, tolerance, and embracing diversity for the other kids and the teachers.

Once Sean entered seventh grade, however, it all changed.  He entered a hostile environment of blatant prejudice and exclusion.  It took such a toll on Sean’s behavior and self-esteem that his mother finagled for him to skip eighth grade just so he wouldn’t have to return to such an unwelcoming atmosphere for a second year.   In high school Sean slowly found his footing and flourished in making a place for himself in the social structure of high school, but acceptance by the teaching staff was still largely difficult and often hostile.

I read this book with great interest in anticipation of my own son’s IEP meeting that would determine his kindergarten placement for the upcoming school year.  We’ve already had such terrible battles with our school district concerning our son who has Down syndrome – it’s been emotionally and financially draining, to say the least.  I was especially interested because the McElwees are fairly local to me, although not in the same school district, so I thought it would give me a pretty good glimpse of what the future might hold for us regarding Finn’s schooling.

Like I said, this book is different from all the other personal stories of Down syndrome out there, and it fills a gap in the Down syndrome/disability literary landscape that has very much needed filling.

However.

My only criticism – and it’s a big one – is that the writing is very much in need of professional editing.  This is a self-published book, and unfortunately, it shows.  There are too many inspirational quotes (and too many faith-based passages which tend to alienate readers who don’t share the same beliefs), too many typos, not enough formatting, and not enough polish.  It really needs a professional hand – especially for the price (ten bucks for Kindle and eighteen bucks for paperback).  I think this book fills such a needed space, but would have so much more impact – on parents and educators – with a major editorial overhaul.