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.

Darcy’s story weaves a curious parallel: two people in her immediate family with the same condition, but the course of that condition in those two people, her brother and her mother were very different.  Dustin was medically fragile and underwent open heart surgery as an infant.  He was non-verbal and used a wheelchair.  The family lived with the knowledge that Dustin would die young.  He was born that way, and Darcy never knew him any differently.  Her mother, in the other hand, was healthy and active and vivacious, and even when her adult-onset MMD surfaced, it was a slow decline.

In the midst of all of this, Darcy coped by being an overachiever at school, both in academics and in sports.

The first half of From My Mother focuses on Dustin, and there is a sense of emotional distance, probably because his life took place in the more distant past, and the severity of his condition made it difficult, if not impossible, for Darcy to know his thoughts.  The real emotional impact, I felt, came with the second half of the book, which focuses on her mother.  In large part, Darcy’s story is about living and finding beauty and gratitude even in while living with the knowledge that death is not far away.

This heartfelt memoir about growing up in a family affected by a terminal genetic disease is not a pleasure read, nor is it light reading.  It’s a much-needed, thoughtful meditation on disability, illness, grief, and loss – but also about resilience and devotion – in the disability literary landscape, especially among families in similar circumstances.

I only wish that the book had found a better editor.  Unfortunately, small presses like the one that published this book often skimp in their editing services, which does a disservice to good books.  Nonetheless, Darcy’s story is worth reading.

I’ve actually had the pleasure of communicating with Darcy Leech, and she agreed to do a Q & A for my readers:

________________

Q:    Having that awareness from the time your brother was born when you were three years old of the fact that he would die before you is a point made several times throughout From My Mother.  From my own experience as a parent, I know that kids typically become aware of the concept of death when they’re pretty young, and it’s not uncommon for them to become a little obsessed with it for a time, fearing their own death and the death of their parents.  How did your awareness of your brother’s short life expectancy impact your feelings about death as a child?

DL:    I had a recurring dream as a child. I would be swimming in a water filled cave with a group of kids. Sometimes in the dream I was the scout who would swim to the next air pocket then come back to tell the group if the passage was safe. Sometimes I had to grab another kid and swim them to the next spot. Every dream was a race against time with rising waters. And almost every time, a child who was less physically capable than me drowned. Let’s just say as a child I ended up often trying to cuddle my mom in her bed after hearing my brother’s oxygen monitor sound an alarm in the middle of the night.  My greatest fear has always been losing someone I feel I am meant to protect. 

Q:    Although your mother was diagnosed with myotonic muscular dystrophy (MMD) shortly after Dustin was born, it doesn’t seem that it was ever a focal point within your family, even after Dustin passed away.  Your mom’s gradual weakening and the slow onset of her other symptoms seem to have often been attributed to other things.  Why was this?  Was her MMD talked about openly within your family?  Was even she unaware that the physical problems she experienced were due to her MMD?

DL:    After my dad retired from the Air Force and we moved away from big cities to Kansas, neither my brother nor mother ever saw another doctor who had treated a person with myotonic muscular dystrophy before them. In fact, when my mother requested work modifications at a job in Salina, she was sent to company approved neurologist who incorrectly told her that myotonic muscular dystrophy didn’t affect women. When she came home from that appointment she cried and didn’t want to talk about it. My dad told me later what the doctor had said. Mom didn’t enjoy visiting doctors about her disease after that. The ones who didn’t know the disease well often gave misinformation and the ones who knew the disease had in the past told her things like “we can’t treat the disease, we can only treat the symptoms.” Myotonic muscular dystrophy is currently an incurable disease with no specific treatment available. Maybe she should have, but she didn’t get in contact with a specialist three hours away for regular check-ins. She’d spent so much time in a hospital with Dustin over the years I don’t blame her. In many ways my mother was less connected to knowledge about her disease than she could have been. I do wish mom would have known about the great online support groups for myotonic muscular dystrophy where she could have talked with others like her.
 
As for me realizing what was really happening with my mom, my mom had seemed perfectly normal to me for so many years in my life. In my mind, I don’t think “I had a mother with a disability.” She lived and lived well the way she was. We knew enough about adult onset myotonic muscular dystrophy, the degenerative effects had a very rapid decline at a time where she was trying to seize what life had to offer her and be strong enough to help me raise my son. She was busy living and doing things she was capable of doing. MMD is a slowly degenerative disease with many effects that aren’t visible to outside eyes. It was hard for me personally to see what was happening to my mother, and harder for me accept that some of those symptoms were part of a currently incurable disease. Mom didn’t sit me down and say “Darcy, I feel worse than I use to and I think it is because of a disease I can’t stop from progressing.” Part of why I attributed my mother’s symptoms to things outside of myotonic muscular dystrophy was because my brother died without a cure, and I didn’t want to think I was losing my mother the same way.   
 
I’m not sure how much mom knew about her health in her last year. She wanted to help me learn to be a mother and watch my newborn son when I returned to work. In her last months, my mother was trying to justify the belief she was physically capable of caring for our son alone during the day. She didn’t tell me about her fears or weakness then. Would you tell your child you are losing ability and fear the worst with an incurable disease? She wanted to be strong. She wanted to be capable. She knew more than she told me.

I’m not sure what admitting to herself to or to me that her incurable degenerative disease was getting worse was going to do for her. I don’t pretend to know what my mother felt. I don’t have the disease she did. I can’t imagine what she could have thought in that last year with an incurable disease. I don’t blame her for not focusing more on the disease and the symptoms. She was focusing on living. She planned a grand birthday for her 90-year-old grandmother and was striving to spend as much time as possible with her first grandchild. Sometimes knowledge isn’t power. That last year, her power was in living each day trying to give as much love as she could to her family. She did it well.

Q:    Did your mom receive any treatment or therapy or even disability benefits once she was no longer able to work?

DL:    My mother didn’t receive disability benefits when she could no longer work. Knowing what I know now and having gained the skills of a daughter who has completed a master’s degree, if we wanted to get disability for my mother we would have contacted a lawyer after her work approved neurologist gave her faulty information about a rare disease he had never before treated. My parents were wonderful at many things, but being self-advocates with complicated paperwork and lawyers wasn’t their style. In fact, once my mother was in the hospital, I made the phone call to the lawyer, filled out her disability paperwork and submitted it myself. For better or worse, my parents were much more likely to try to be grateful for what they had then to advocate for more. There are a lot of things I wish 30-year-old Darcy could go back in time and tell 30-year-old Jo Lyn. It is notoriously hard for individuals with adult onset myotonic dystrophy to get disability though because of the gradual change over time. Many with the disease will lose a job due to something like not being as sharp at remembering details, or like my mom falling asleep as a para-educator and not getting called back.  
 
This probably goes back to my parents’ philosophy of trying to enjoy what life offers rather than stressing about something more – my dad had military retirement and a weekly paycheck. Mom probably thought her and dad had what they needed and I’m not sure she would have thought well of the potential rejection or impersonal judgment in the application process of disability. It would take a good amount of desire, gumption and determination to want to fight to prove you weren’t capable of something anymore. It doesn’t seem like the most enjoyable process for someone who was as capable as anyone else in her 20s.

Q:    I kept thinking, throughout your book, that counseling and/or a support group might have been so beneficial to you as a child and then a teen, as well as to your parents, for everything you each experienced with respect to being affected by a rare, terminal illness in the family.  Was there never a point when that was available to you?  Do you feel that it might have helped each of you cope with the difficulties you faced, even if it just meant not feeling so alone?  What would you say to other families out there dealing with similar situations with regard to seeking support?

DL:    My parents did go to a bereavement group together for a while after Dustin died. I think it may have been too soon though because they stopped going after my mom said it made her feel “too sad.” After holding her son in her arms as the ambulance approached, my mother was clinically depressed and treated for it. We had an incredible church family in Salina and my mother found some comfort in a women’s group there.  
 
My dad says Eli, my son, saved him. After mom passed away, my father moved in with me and my husband and took mom’s place in being the one to watch Eli while we worked. My dad still lives with us and is the caretaker for my children.  
 
Part of my story is that I was an Air Force brat and went to 14 different schools before graduating high school. I remember in 1st grade I packed my bag to run away from home and my mom referred me to the school counselor and I visited with her once a week for a while. I flew under the “crisis radar” in a way by overachieving. I got straight As almost every year until I was 16 when my brother passed way, and that year I was a three sport varsity athlete and would play on a state champion summer softball team. I tried really hard to look like I had it all together. My high school gifted counselor, Kay Schiebler, is one of the most important people in my life though. I cried in her office many time my junior and senior year. She came to my brother’s funeral, my wedding, my mother’s funeral and my first Salina book signing. I actually pursued a gifted facilitator position myself because of how large of an impact she had on my life as I struggled with loss in high school.  
 
I tell people writing From My Mother was my therapist, but I know there would be benefits to me seeing a real therapist. I have a lot of unresolved feelings, even, or maybe especially, after writing and getting questions like this one from readers. Women’s Bible studies have been my biggest outlet. I’ve had the same summer women’s Bible study group the last four years, and those ladies have prayed me through a lot. I also have prayer partners I can share concerns and requests with and who know some of the deepest angst in my heart. I carry a note card of scripture memory verses on an O ring in my purse. I rely heavily on faith and women’s groups for my resilience.  
 
I’ve sat in a therapist’s office for one hour at a mental health center in my life about four years ago. There were things I wasn’t ready to admit yet. I didn’t go back. It would probably be a good idea to regularly see a therapist some time, but I’ll admit, I’ll have to quit trying to make my parents seem successful by raising a girl who can do so much on her own first.  
 
My biggest recommendation for families like mine is to use the power of the internet and social media to get plugged into Facebook support groups. I actively interact in a Myotonic Dystrophy Information and Support group on Facebook, follow a page about a boy who looks so much like my brother https://www.facebook.com/PrayersforBabySpencerKelly/?fref=ts&ref=br_tf# and empathize with others in a Caregivers Support Group for Myotonic Dystrophy. Before starting From My Mother, I’d never met another woman like my mother. Now I know so many in families like mine. Those connections have been amazing for me, and sometimes heart wrenching, but fulfilling in ways locals can’t provide. I hugged a daughter like me from another mother with myotonic muscular dystrophy at a recent MDA Muscle Walk. As strangers, we shared a few tears together and I’ll never forget that moment. It was a first. Relationships are where it’s at. There are lots of good people in the world.

Q:    You mention in your last chapter that you underwent genetic testing before you got married to see if you had inherited MMD, and that your results were negative.  Still, how did your experiences with genetic disease within your family affect how you approached your own pregnancies?  If your mom had known she had MMD before she got pregnant, do you think she would have made different choices about having children?

DL:    Daniel, my husband, and I had many conversations before I told him I wanted that genetic test. He said it was completely up to me and that he didn’t need me to have the test done. My sister-in-law in nursing warned me that it might flag me the rest of my life with a pre-existing condition in a world of changing medical insurance regulations. Daniel and I said we would have children no matter what, but I knew how my brother had cost my parents financially. My brother’s life was beautifully worth living. He felt joy, spread joy, learned, played, hugged and loved. I will always think he is the most innocent and special person in my life. I would have loved to have had the chance to raise a child like my brother; in fact, I grew up fantasizing about it oddly enough. However, I didn’t want to have a child like my brother unexpectedly or too young, because then our married financial life and career paths would be forever changed. I got that test so I could know when I wanted to have a child. I had my first child when I was 25, but if I had myotonic dystrophy, we probably would have waited until we were about 30 to try to have a child partly because I knew what having Dustin did to my mother’s career options.  
 
I’ve been very grateful to have had the chance to bring two beautiful children into the world. When the doctor asked if I wanted to do any prenatal testing, I declined both times. I know from my parents’ example that I would love my child as my child no matter what. Having the negative result from my genetic test for myotonic muscular dystrophy has made many decisions easier and I’m glad I have that knowledge, but no matter what, a life created inside my womb would have value and meaning all on its own for me and Daniel.
 
I have known of some children born with myotonic muscular dystrophy who end up wards of the state while still in the NICU in part because he or she had a mother who was surprised and underprepared. The financial and emotional costs that come with congenital myotonic muscular dystrophy can be high. Many with myotonic muscular dystrophy are first diagnosed once they have a child who exhibits more drastic symptoms than they do. Most women don’t know. Genetic disease and financial difficulty often go hand in hand. A human life isn’t worth less because it costs more, but if a parent has a family history of a genetic disease and can equip themselves with the knowledge of their own genetics; it can lay the groundwork for a more informed planned pregnancy process. I’d personally recommend the genetic test to any one in a family with muscular dystrophy before deciding when to go about having children. Any child is a life changer, but a child with MMD is often a career changer too.  
 
My mother wasn’t diagnosed until after she had children. She had multiple miscarriages before having me, and a miscarriage between me and my brother. She really wanted to be a mom, and she was great at it. I hope she would have picked to be a mother no matter what. Social pressures can be hard for a woman with a known disability though. There are some in the world who would think that a person with known muscular dystrophy is bringing a social burden into the world if they choose to have children, or being unfair in bearing a child who will need medical interventions. If my mother did know she had myotonic dystrophy, I hope people would agree that she would have every right to have children if she wanted to. A baby isn’t any less worthwhile because of potential physical strength, life span, or intellectual understanding. I am 100% grateful my brother had the chance to join the world, and obviously grateful I did too. I wouldn’t be who I am if my brother were never born.  
 
Still, I don’t blame anyone with MMD doing pre-implantation genetic testing. I may think Dustin was the greatest brother, blessing and advantage I could have in life and that his uniqueness made life grand in ways other people can’t, but life can be lived well many different ways. If a mother with MMD has the chance to raise children who won’t feel her pain, my mom was great at that for me. I don’t have MMD, and I’m not about to judge the life choices of any who do because I know I don’t know what it is like to face those questions. It would be a tough decision. Above all though, I hope society doesn’t try to go making those tough decisions for people they don’t know in a situation they can’t fathom.

Q:    What was the process of writing this very personal and honest story like for you?  How long did it take to write?  Do you have plans to write anything else?

DL:    I’ve written as a coping mechanism all my life. The year my brother passed away I carried a notebook everywhere and wrote essays about the nature of existence during history lectures. But after my mother passed away, I didn’t write at all for seven months. When I finally started on the story I felt I was born to write, it took me four years to complete. Writing was how I processed the emotions I had been repressing. I cried through messy drafts and cried again through revisions. Honestly, I think writing saved me because it was one of the only places I’d let myself feel that deeply. It was hard.

The readers’ responses to the writing though has been so rewarding. I pray every night that From My Mother finds the audience who needs it. Now, not everyone needs it. Sometimes I’m scared to think what a woman like my mother would feel reading her story. Some may find strength, and some may find fear. I wrote From My Mother to help people in families like mine – a spouse caretaker, the grieving parent, the typical sibling with an atypical home life.  One of the hardest parts of writing a story so personal and honest is that I know it has a high impact, and I hope that impact is good. The book isn’t a simple pleasure read. People cry when they read it. But I hope those tears are meaningful, that the human aspect of the love and loss in the book help someone feel less alone. In telling an honest and personal story, I hope I don’t hurt too many readers by sharing what happened in my life. From My Mother isn’t the staple story of what should or will happen in anyone else’s life and it’s not a moral guide of how to make difficult decisions. It’s the story of how the strength I gained From My Mother allows me survive and thrive coming from a family ravaged by genetic disease. God bless that woman; she was amazing.

I do have plans to write more. I have a trilogy in mind about a sibling pair similar to me and my brother. I’ll be honest, I want to write a book where someone like my brother does find a cure and gets the chance to live a normal life. I also have a children’s book planned for a parent to read to their typical child about their sibling with special needs. As a kid, it would have been nice to own literature written for me. I want to provide that for someone else. In the distant future, when I am older and wiser, I’d like to write a devotional specifically targeted to surviving caretakers in families with genetic disease. It would be niche literature, but scripture like “my strength is made perfect in weakness” has a complex meaning in a family with DNA some may label as “faulty”.  I’d read a book like that if I knew it exists, and I don’t know that it exists, so one day I’ll write it. In the meantime, I’ll blog at darcyleech.com

The Girl In the Spider’s Web by David Lagercrantz

girlinthespidersweb The Girl in the Spider’s Web: A Lisbeth Salander novel

by David Lagercrantz

At the heart of the story is an eight-year old autistic boy, the son of a genius scientist who specializes in artificial intelligence, who is the only witness to the brutal murder of his father.  The bad guys who killed Frans Balder, the boy’s father, realize too late that although young August is non-verbal and appears to be severely intellectually disabled, he is actually a savant who is perfectly capable of identifying his father’s murderer.  And so the rest of the story centers around the bad guys’ efforts to do away with the boy, and Lisbeth Salander’s efforts to protect him.

On a side note, I have to comment on August Balder – or rather, the utilizing of a disabled character in fiction writing.  It’s become so commonplace that it almost feels cheap to me.  Here we have a disabled boy (who of course is actually brilliant, because a truly intellectually disabled character wouldn’t do – what possible value could such a character bring to a story except to elicit pity?), who, although he resides squarely at the center of the story, is nonetheless one-dimensional and stereotypical.  We never actually get to know August, nor are we given an opportunity to care about him beyond the fact that men are trying to kill him.  His character – and his disability – are merely convenient vehicles for a particular plotline.  I just wish that authors could do better.  Sadly, this is merely a reflection of society’s persistent views of people with disabilities: the disabled remain on the fringes.  Even when they occupy positions central to a novel, they are rarely fleshed-out, whole people in their own right.

Read the rest of my review here.

Freak the Mighty by Rodman Philbrick

71q9tVDYznL Freak the Mighty

by Rodman Philbrick

I read this months ago, and only recently realized that I never got around to writing a review. So now a lot of the details have faded from memory, but here’s what I remember (and my impressions):

“I never had a brain until Freak came along ….”

So opens this short novel written for the pre-teen set. Max, unnaturally large for his age (to the point that people are scared of him) has been deemed stupid, slow, etc., etc. all his life, and is in the special ed class at school.  The summer before eighth grade, Kevin moves into the neighborhood, and everything changes.  Kevin, who has a rare form of dwarfism, and who happens to be a genius, recognizes in Max what nobody else has before: that he’s actually a worthwhile human being.  Oh, and he’s actually not stupid.  Together, they call themselves “Freak the Mighty,” and go forth having adventures and giving the finger to everyone who disses them.

So, once again (see Out of My Mind and Wonder) we have a feel-good story for kids that purports to set forth a lesson in tolerance, compassion, diversity, and inclusion, but which fails because it denigrates intellectual disability.  It’s okay to be disabled, but it’s not okay to be intellectually disabled.  This is the message served up with lots of syrup to disguise it.  This message – this reiteration of the hierarchy of disability with intellectual disability at the very bottom – seems to be proliferate in children’s literature, which is, of course, merely a reflection of real life attitudes.

Sigh.

At its heart, this is a story about friendship and loyalty and discovering our own worth and believing in it.  Sadly, the other message kind of ruins it.

Fish in a Tree by Lynda Mullaly Hunt

41jSi7C+UcL._SY344_BO1,204,203,200_ Fish in a Tree

by Lynda Mullaly Hunt

This book was suggested to me by a commenter on my other blog when I began writing about my daughter’s dyslexia, which we only recently discovered that she has.

Fish in a Tree is a tween book, aimed at the 9 – 12-year old crowd.  Narrated by Ally, a sixth-grade girl who has attended seven schools in seven years, because her dad is in the army and the family moves a lot.  Ally has always been seen as a trouble maker at school – a girl who is defiant, goofs, off, and seems to prefer being sent to the principal’s office over staying in class and learning.  What nobody knows is that this behavior is merely a front.  More than anything, Ally wants to get along, she wants to be liked, and she wants to fit in – but she can’t read, and she’ll go to great lengths to keep that secret.

When her sixth-grade teacher goes out on maternity leave, the long-term sub comes in and shakes the class up with his enthusiasm and determination to see the best in every student – even Ally.  It doesn’t take long for Mr. Daniels to figure out what’s really going on with Ally, and he takes matters into his own hands, determined to address her dyslexia and show her that not only can she learn to read, but that she’s smart and gifted in her own way.

A little ableist, a little contrived, but still an enjoyable story.  It’s very much a teacher-as-hero story, and while it is a feel good story (and written for a certain young age group), it saddened me that real life school doesn’t often resemble anything close to what was portrayed in the story.  The hero teacher seems to be an endangered species, as the pressure increases to fit kids into neat little boxes, and to squeeze the best test scores out of them.  Also, shockingly, dyslexia is rarely “recognized” by public schools, even though it is the most common learning disability.  Because most schools and school districts do not officially “recognize” dyslexia, although they may recognize reading troubles and offer reading tutoring, most schools do not offer intervention that addresses the very specific needs of a child with dyslexia.  This leaves a lot of kids up the creek.  They either fall through the cracks (as was happening to my daughter before I began homeschooling her a year ago – and I didn’t even figure out that she has dyslexia until recently), or their parents are forced to spend big bucks for private tutoring by dyslexia specialists.  California just passed a law mandating that California public schools recognize dyslexia and offer services for dyslexic students the other day!  It’s 2015, folks.  And it won’t even go into effect for a year or two.

Anyhoodle!

So, yeah.  Enjoyable book, but probably doesn’t reflect real life all that well.  It does have a few tear-jerker moments, and the underlying message of “Great minds do not think alike” is a good one for kids.  I’d love to have my daughter read this, but it’s probably a year or two above her reading level.  We’re working on it though!  (Her reading, that is.)

The Rosie Effect by Graeme Simsion

{62082799-D96C-4CE1-9E8E-72DB51CB811E}Img400The Rosie Effect: A Novel

by Graeme Simsion

The Rosie Effect is the sequel to last year’s bestseller, The Rosie Project, which I reviewed here.  In this installment, Don Tillman and Rosie are newlyweds.  As the novel opens, Rosie announces that she is pregnant.  Which totally throws Don for a loop because it wasn’t part of The Plan, at least not yet.  Apparently Rosie decided to throw caution to the wind and get pregnant without telling Don her intentions.  Probably not a great thing to do to someone who thrives on rigid structure – plus, Rosie is in the middle of writing her thesis, and frankly, the timing of a pregnancy just in the midst of that seems  … er, ill-conceived.  It was hard to even understand why Rosie would decide to get pregnant at that particular time; even though she’s disorganized and somewhat fly-by-the-seat-of-her-pants, she’s utterly committed to her studies and her goal to become a doctor, and refuses to even consider deferring her studies.  But I guess a surprise pregnancy was the necessary vehicle to keep the Don and Rosie story going.

As he attempts to come to terms with Rosie’s pregnancy and impending fatherhood, to which he is convinced that he is more and more unsuited, Don’s life becomes borderline slapstick.  Meanwhile, Rosie is a cranky meany-pants, and their new marriage is crumbling, and fast.  Can Don turn things around?  Well, you can probably guess.

I had very mixed feelings about this book.  Don is likeable, though Rosie, not so much.  The comedy was a little much – it made the story hard to buy into.  And the discomfort I felt with The Rosie Project with regard to how autism and Asperger’s are handled, and how that reflects on society’s views on disability, was felt even more keenly.  In this story, there is a definite defensiveness about any suggestion of Don being autistic, and that felt very ableist.

It’s a readable story, and if you’re dying to know what happened after the wedding, go ahead and read this.  I found it to be rather disappointing.

The Pleasure of My Company by Steve Martin

413NZHCSZKL The Pleasure of My Company

by Steve Martin

I first read this novel several years ago.  I remember enjoying it immensely, and I remember it being about a guy with Autism – perhaps Asperger’s, although at the time I didn’t yet have a child with a disability and wasn’t yet very informed at all about disability or autism (I can’t say that I am now knowledgeable about autism, but perhaps more so than I was back then, if only by virtue of association with parents of autistic kids and one or two autistic adults).

In any case, as it turns out, upon re-reading The Pleasure of My Company a couple of weeks ago, I discovered that it’s not about a guy with autism, but rather, it’s about a guy with OCD.

Daniel Pecan Cambridge, in his early to mid-thirties, lives in an apartment in scenic Santa Monica.  He’s pretty disabled by his obsessive compulsive disorder (and for anyone who casually throws around the term “OCD” to describe any structured or high-strung behavior, you should know that OCD is an actual disorder, and it’s offensive to use the term flippantly or derogatorily, and you probably should stop doing it).  He can’t step off of curbs; he can only cross streets at driveways that are directly across from another driveway.  All of the burning lightbulbs in his apartment must add up to exactly 1125 watts at all times.  He becomes incapacitated by anxiety if faced with anything that deviates from the structured rituals he has created for himself.  Because of the severity of his compulsions and anxiety, he doesn’t drive and can’t work, so is on disability, and is visited once a week by a student shrink.

Despite his quirks, Daniel is charming and funny.  He’s also sensitive and lonely, and his vulnerability makes him very endearing.  He fancies himself in love with a middle-aged realtor who hawks apartments across the street; they’ve never actually met, but he is pretty sure that she won’t be able to help but fall for him once they meet face to face.  An actress who lives in his complex is a regular at his apartment and Daniel manages to act as her surrogate therapist; her boyfriend, the big galumph, turns out to be a very good friend to Daniel, indeed (sniff sniff).  And then his relationship with the student shrink takes an unexpected turn … well, I won’t spoil it.

Though neither autism or Asperger’s is ever mentioned in the book, nor in any descriptions of the book that I could find online, it does seem like Daniel does have some autistic traits – but what do I know?  I wonder what the author’s intent was in that regard.

In any case, Steve Martin (yes, THE Steve Martin – actor, comedian, banjo player extraordinaire) is a gifted writer.  I’ve read all of his novels and enjoyed them all.  In this novel, he creates a believable, likeable character with a disability that, in the end, doesn’t disable him, and enriches the lives of those around him.

A real treat.

Three Children’s Books About Down Syndrome

For the last two years running, I’ve gone into my son’s classroom and talked to the children about Down syndrome, as Finn has Down syndrome.  I’ve begun my little talk by reading My Friend Isabelle to the class – which is a wonderful book, by the way: frank, sensitive, short and sweet, and never pitying or condescending.  This year Finn is in first grade, though, and I’ve wondered if first-graders might be a little beyond My Friend Isabelle.  So I’ve started searching for a good next-level book to read to a class.  Following are three I found on Amazon, and my thoughts on each:

UnknownWillow the Walrus-Educating Children about Down Syndrome

by Shelly Weiss

Aimed at ages 4 – 8, this book does a fair job of giving a brief description what exactly Down syndrome is – the triplication of certain chromosomes.  Beyond that, this book pretty much turned me off.  I think there is a real problem with attempting to portray Down syndrome embodied in a walrus, or any other non-human.  Presenting the person who has Down syndrome as not a person at all I think could end up being very confusing for kids in this age group, and lead to more questions than answers for them.  Further, the entire premise of the book is Willow, the walrus who apparently has Down syndrome, reciting a poem that feels very much like she’s trying to sell the reader on Down syndrome and why people with Down syndrome are great.  I don’t want to qualify Finn to anyone, and I very much shy away from doing so.  I’d like instead to foster acceptance of everyone by everyone merely for our shared humanity.

Thumbs down on this one.

61efFfCjfdLTaking Down Syndrome to School (Special Kids in School)

by Jenna Glatzer

Aimed at ages 4 and up, this one felt promising by its title, but ended up being a disappointment.  We find out on the second page that Nick, the main character, a boy who has Down syndrome, goes to a regular public school with “all sorts of kids” rather than a “special school.”  Yay, right?  Wrong.  We find out later that although he goes to public school, he’s in a special ed class.  Now, I know that there are plenty of parents out there whose kids with Ds are in special ed classrooms either part- or full-time rather than fully included in general ed, and I’m not going to go into the whys and wherefores of that here, because that’s a whole other blog post.  But in a nutshell, this book is NOT pro-inclusion, and it’s kind of subtle about not being pro-inclusion because it sort of seems like it’s trying to appear to be pro-inclusion, but it’s just really not.  So if you happen to be a parent who is pro-inclusion, this probably isn’t a book that would be your cup of tea – it wasn’t mine.

Further, it’s ableist, as well.  “Not all kids with DS are the same.  Some of them have more trouble learning than I do.  I am lucky because I am learning handwriting and math.  Some kids with DS can’t do that.”  The message I get – and that young children would surely get – is that ability = value.  So, it’s really sad that some kids can’t do handwriting and math, and they are to be pitied.  Right?

Even some of the “Tips for Teachers” in the back of the book are problematic.  For instance, in a paragraph about using People First Language, the author advises, “Remember, it’s not a ‘Down syndrome boy,’ but rather, a boy living with Down syndrome.” Living with?  How about just with?  The “living with” is just not a far leap at all from “suffering from” or “afflicted by.”

Anyway, I just really didn’t care for this book.

51ONebSQKHL._SX258_BO1,204,203,200_My Friend Has Down Syndrome (Let’s Talk About It Series)

by Jennifer Moore-Mallinos

Out of the three, this one is the most promising.  It’s very down-to-earth and compassionate without being sappy or condescending.  It’s narrated by an eight-year old typically developing girl who tells about going to summer camp.  One day, a new camper arrives, and she has Down syndrome.  The kids are a little wary of her at first, but quickly figure out that above all, she’s a kid who wants to fit in, make friends, and have fun just like the rest of them.  This book, I feel, presents differences without being divisive, and definitely presents inclusion in a very positive light.

Although it’s aimed at ages 4 – 8, I feel like it’s probably best suited for second- and third-graders, so I’m not sure about reading it in Finn’s first-grade class.  I may just suck one more reading out of My Friend Isabelle – I’m not sure yet.  Still, I’m hanging on to this one for future use for sure.

The Last Picture Show by Larry McMurtry

cvr9780684853864_9780684853864_hr The Last Picture Show

by Larry McMurtry

Although this iconic novel by Larry McMurtry is not about disability, it does feature a prominent character with a disability.  I am always interested in how disability is treated in the various genres of literature.

In this fictional novel (although it’s apparently semi-autibiographical) set in a small town in 1950s Texas, Billy is an intellectually disabled teen.  His mother, a “deaf-mute,” died in childbirth, and Billy was virtually abandoned by his father, so Sam the Lion, an older man who owns the town’s pool hall, movie theater, and cafe, and whose own three sons and wife are dead, takes Billy in.

Billy’s disability is never specified, except that it’s clear that he’s intellectually disabled.  He is regularly referred to as an “idiot” (seriously, people, if you really think that the insult “idiot” is any different from “retard,” you need only go back about twenty or thirty years to see that it was the word used to describe what we now call “intellectually disabled”), and at one point, “returded.”  I wondered throughout the book if he might have Down syndrome, only because it seemed that the fact that he was intellectually disabled was recognizable by sight alone.  However, the term “Mongoloid,” the common word used to describe Down syndrome specifically in that time period, does not appear anywhere in the story, and in any case, McMurtry never specifies what Billy’s condition is.

What I found interesting is that Billy found a makeshift family in the townspeople.  Most of the townspeople are fond and somewhat protective of him.  At one point, some local boys take him to a prostitute to lose his virginity, and that was a disturbing in that it felt horribly like Billy was being exploited and mistreated, but for the most part, he is accepted by the town as one of their own, and he is treated with equal measures of deference and, yes, pity.  It would have been almost a given during that particular era for a child like Billy to be institutionalized; the fact that he wasn’t, that he was taken in and cared for, was surprising to me.

The Last Picture Show is a book worth reading, for the story itself and for the disability angle.  You can read my full review here.

Writing With Grace by Judy McFarlane

20763909 Writing with Grace: A Journey Beyond Down Syndrome

by Judy McFarlane

In 2006, Judy McFarlane, an aspiring writer herself, was asked by a friend if she would help a young woman with Down syndrome write a book.  “I always dream to be a famous writer,” twenty-three year old Grace Chen had written in her notebook.

When Grace was born in Taiwan and the family learned that she had Down syndrome, Grace’s grandfather advised Grace’s parents to put her away in an institution and forget about her.  Instead, Grace’s father said to his wife, “Now we have to think how to help this child.”  Eventually, they decided to emigrate to Canada to make a new life for themselves.

When McFarlane is introduced to Grace, she has big reservations.  She’s always had aspirations to write herself, but instead pursued a career as a lawyer, and then stopped working to raise three children born in quick succession.  Now her children were grown, and that old desire to write – to be a writer – was pulling at her again.  Unsure of her own abilities as a writer, she was ambivalent about helping someone else write.  But her reservations went deeper than that, and that is what underpins this story.  It’s the story of how Judy McFarlane, middle-aged former attorney, aspiring but unsure writer, spent several months helping a young woman with Down syndrome write a book.  More than that, though, it’s a pretty courageous and unflinching look at her own prejudices, fears, and preconceived ideas about Down syndrome and disability, and that’s what makes this book unique in the Down syndrome literary landscape: the perspective from which the story arises and is told.  It’s not so much the story about a young woman with Down syndrome, but one about an older, educated, accomplished woman who confronts head on her own feelings and ideas about disability and Down syndrome.

Over the months of sitting down with Grace to help her write her book, McFarlane develops a growing fondnessOLYMPUS DIGITAL CAMERA for Grace that doesn’t feel condescending, as well as a friendship with Grace’s parents.  Her growing interest in learning more about Down syndrome leads her to meet and talk to other adults with Down syndrome and their families.  She also confronts memories of a girl from her childhood who had Down syndrome and was bullied while young McFarlane stood by.

I really enjoyed this book, and I think its unique perspective, thorough research, and engaging writing make it an important addition to anyone’s Down syndrome/disability book shelf.

For a look at Grace’s book – a modern take on the traditional Cinderella story, check it out on Amazon: Cinderella-Grace Vancouver Princess

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.

The Memory Keeper’s Daughter, which has become somewhat of a staple on the bookshelves of parents of children with Down syndrome, is a profound story of loss and regret.  The story centers around a lie, one told with the best of intentions, but which reverberates through the years in ways never imagined by the person who utters the lie.

The story opens as snow begins to fall on a March evening in 1964 in Lexington, Kentucky.  Norah Henry, only twenty-two and still a newlywed, young, beautiful, and trusting, goes into labor three weeks early on this night.  It is her first child with her handsome doctor husband, David.  As the young couple realizes that their baby is determined to be born this night, the falling snow grows into a full-fledged storm, and they make their way across town on treacherous roads to the clinic at which David works, knowing they won’t make it to the hospital in this weather.  When they reach the clinic, David’s nurse is waiting, and she delivers the startling news that the doctor who was supposed to meet them there to deliver the baby went off the road into a ditch in the storm.  David must deliver his own child.

The birth goes smoothly, with the nurse administering gas to Norah through the worst of it, which renders her mostly unaware of the events unfolding at the foot of the delivery table.  A healthy boy.  But then, David realizes that there is another baby, and soon that baby also slips out into his hands.  They didn’t even know that they were expecting twins.  David immediately recognizes that the second baby, a girl, has Down syndrome.  He makes a split-second decision that will set in motion a future he cannot foresee in that moment: as his wife lies on the table unconscious, he hands the baby girl to the nurse and instructs her to take the infant to a home for the feeble-minded.  When his wife regains consciousness, he utters the lie that forms the basis for the rest of the story: he tells his wife that she gave birth to twins, but that the second baby died before drawing her first breath.

Now, I have trouble with this part, because no matter how I turn it over in my mind, I can’t understand why he even bothered telling his wife that she gave birth to a second baby.  She was essentially unconscious during the birth and had no memory of it; it seems that he only complicated matters by telling her about the second baby at all.  However, this is a story, and this lie was necessary in order for the rest of the story to happen.

So.  Norah grieves for this daughter she neither knew she was carrying, nor ever saw or held.  I don’t doubt that there would nevertheless be a profound grief, but it would seem that it would be based largely in shock at finding out one gave birth to a baby one didn’t even know one was carrying.  But, I digress.

Caroline, the nurse to whom David handed his newborn daughter with instructions to take her away, does go to the institution with the infant, Phoebe, and finds it to be a terrible place.  She can’t bring herself to leave the baby there, and impulsively leaves the home and takes the baby with her.  Not knowing exactly what she’ll do, she takes the baby home with vague some expectation that David will come to his senses and do the right thing and claim the baby.  However, when she sees a notice in the paper a few days later announcing a memorial service for Phoebe Henry, stillborn daughter of Dr. David Henry and his wife Norah, she understands what David has done, and she leaves town with Phoebe to start a new life elsewhere, raising Phoebe as her own.

The novel spans a quarter of a century, alternating between the Henry family’s lives in Lexington, and Caroline’s life with Phoebe in Pittsburgh.  After the death of their daughter, Norah never fully recovers; her daughter’s absence is a void inside her, and she draws more and more into herself as David, coping with guilt and regret, builds an invisible wall of distance between himself and not only his wife, but his son Paul, as well.  Paul grows up feeling the distance between his parents and the hole left by his dead twin sister, and tries to bury his rage in music.  The anguish in this family is palpable.

Meanwhile, miles away, Phoebe grows up with the only mother she knows, Caroline.  Fortunate to be free of most of the health problems associated with Down syndrome, Phoebe is healthy and well-loved.  Caroline fights for Phoebe to go to school and receive an education, and she willingly sacrifices her career and dreams, as mothers do, for her child.

Predictably, Norah eventually learns the truth: that her husband lied to her, that their daughter never really died, that she’s alive and well and living in Pittsburgh with Caroline Gill, the nurse who helped deliver her babies all those years ago.

Luminous and deeply affecting, Edwards spins this story with almost dreamlike prose.  The characters are so richly and vividly drawn, their feelings and thoughts so well revealed – it all just felt so real.  Parts of it I questioned, like David telling his wife about the second baby in the first place.  I also thought that when Norah does finally learn of her daughter’s existence, she doesn’t seem shocked or troubled at all to find out that she was born with Down syndrome – and I thought that unrealistic.  Although finding out a child you thought was dead is not actually dead would certainly trump finding out that child had Down syndrome, I still think that the Down syndrome piece would nevertheless be something to grapple with and come to terms with.

I appreciated that Edwards did not conjure up an ending that was neatly wrapped up.  There really is no happily ever after.  Once Norah and her son Paul learn of Phoebe’s existence, they try to forge a relationship with her, but it’s clearly fraught with awkwardness and uncertainty.  Edwards did a fabulous job, I thought, too, of portraying a person with Down syndrome and attitudes about Down syndrome and intellectual disability in line with the time periods of the story.

The tendency for those who read The Memory Keeper’s Daughter, I think, is to rail against David Henry, not only for lying to his wife, but for giving his daughter away at all.  The tendency, I think, is to believe that if only he hadn’t handed the baby over to Caroline and instructed her to take the baby away, all of this anguish and heartache would have been avoided.  One only need read Theresa Shea’s The Unfinished Child, however, to realize that the harsh truth is that chances are almost certain that Norah would have also sent her baby away had she known of its live birth and chromosomal makeup.  That’s generally what was done up until only twenty or thirty years ago.  Shea paints a stark and utterly realistic picture of what generally happened when women gave birth to babies with Down syndrome back then: they sent them to institutions because they were advised to and because there really were no resources available to parents who actually wanted to raise their disabled children at home – and then they mourned them forevermore.  There were very few happy endings in those days; although Caroline throws convention to the wind and raises Phoebe herself, and does it well, she does it at great cost to herself and against great odds.

The Unfinished Child then brings us to the present day, and shows us how Down syndrome is viewed today; we have more choices now, but those choices have their own consequences.

I think The Memory Keeper’s Daughter and The Unfinished Child complement each other extremely well; if you read one, read the other.  They’re both excellent, illuminating stories.