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.

Not Always Happy does stand apart.  Its subtitle, An Unusual Parenting Journey, is a true description not only in that parenting an atypical kid is bound to be somewhat atypical in itself, but because Wagner-Peck and her husband’s parenting journey has been atypical even in the context of raising a child with Down syndrome.  Also, this memoir isn’t the typical grief-acceptance-celebration storyline.

Wagner-Peck and her husband married a little later in life.  She was already in her mid-forties.  They wanted children – or a child – but decided to forego fertility intervention and set their sights on adoption.  They wanted a “typical” child on the young side.

“We felt we had made it quit clear the biggest disability we were capable of coping with was a child who was left-handed or color-blind.”

But when they get a call that a two-year old boy with Down syndrome is available through the state foster system, after an initial, brief hesistation, they decide that this boy is meant to be their son.  The more they learn about Thorin, they more they fall head over heels for him.

After a long and somewhat harrowing foster-with-the-hope-of-adopting process, during which it remained unclear if Thorin’s biological mother would relinquish her parental rights, Kari and Ward become Thorin’s adoptive parents.  Over the course of the next few years, they deal with Thorin’s health issues, behavior issues, and attachment issues, slowly but surely becoming a cohesive family.

Much of the story revolves around their experiences with schools, teachers and other staff as they attempt to make sure Thorin’s educational needs and rights are met.  So many of their experiences mirrored our family’s with respect to our son Finn’s schooling.  Reading the pages on which Kari recounts battles, demoralizing IEP meetings, scornful teachers, baldfaced lies by school district staff, and repeatedly coming up against brick walls in trying to get one’s child’s needs and rights met – my blood boiled at my own memories.  Eventually, the Wagner-Pecks pull Thorin out of school to homeschool him, which is also what we eventually did with Finn.

In one segment, Wagner-Peck recounts how she worried about how to tell Thorin that he has Down syndrome.  As I read this, I felt a twinge of recognition – I knew where this was going.  As I kept reading, my heart started pounding and I wondered, “Am I going to see my name written on these pages?”  Then she recounts how she sat Thorin down and impulsively told him that he has a superpower called Down syndrome, and how she recounted that conversation in an article for HuffPo, and how some people gave her crap for it.  I was one of those people; I remember reading her HuffPo article and responding to it with a blog post, which, if I recall correctly, she commented on.  When I bought her book, I didn’t remember her name as the woman who wrote that HuffPo article.

In any case, I really enjoyed her book.  Unfailingly honest, written with plenty of humor, heartfelt without being saccharine, I think every parent should read this to understand, if nothing else, some of the hell we parents of atypical kids go through at the hands of institutions that are supposed to serve our children.

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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.

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

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 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.

At the heart of the story is the relationship between two sisters: Nancy and Amanda.  Amanda, a forty-year old woman with Down syndrome, is the youngest of eight children.  Among the siblings, she is closest to Nancy, eight years her senior.  From the time Amanda was brought home from the hospital with the announcement from their father, “Your new sister is a Mongoloid,” Nancy has doted on Amanda.  By  the time Amanda is in grade school, most of the other siblings have left home, and their mother, suffering from chronic depression, casts Nancy in the role of Amanda’s main caregiver and playmate.

The North Side of Down covers a period of a couple of (recent) years when all of the siblings are adults, and their aging parents suffer severe medical setbacks that necessitate the adult children to step in.  First their mother dies, and within a couple of years their father, Amanda’s legal guardian, also dies.  In the midst of heart wrenching grief, old wounds between the siblings are brought to the surface, battle lines are drawn, and a custody battle over Amanda ensues.  Sadly, fighting over custody of this intelligent, funny, sarcastic woman with an intellectual disability and health issues of her own appears to have less to do with love than with power struggles within a very dysfunctional family.  In many ways Nancy would seem to be the best choice for Amanda’s guardian – they have the closest relationship, and more than the other siblings, Nancy seems to understand Amanda and have her best interests at heart.  Unfortunately, Nancy is in the midst of bankruptcy and, as a dog trainer and struggling artist, doesn’t have the financial means to be Amanda’s guardian, so she must pit herself against her family and try to fight for the best achievable arrangement for Amanda.

While this memoir doesn’t center around Down syndrome, it does offer insight into what can happen in a family when guardianship issues concerning an adult with disabilities are not properly dealt with before it’s too late.  It also offers insight into the dynamics of a severely dysfunctional family, which, sadly, too many of us can relate to.

This is a self-published book, and I would love to see it get picked up by a publisher.  Although it would benefit from professional editing, Nancy is a talented writer, and Amanda’s contributions bring the story more to life.  A story with real heart; I definitely recommend it.

Know the Night by Maria Mutch

[Originally posted on June 9, 2014 here]

6a017ee3e1169b970d019b01ad2318970d-300wi Know the Night: A Memoir of Survival in the Small Hours
by Maria Mutch

This debut memoir is Mutch’s account of a two-year period during which her oldest son Gabriel, from age eleven to thirteen, didn’t sleep much, and as a result, neither did she.

This book stands apart from other parental memoirs of disability on many fronts. Far from being a hand-wringing rant, or even a tale of coming to terms, Know the Night is deeply contemplative, and reading it felt a little like being allowed into a quiet, private chamber. During the chronic night wakings, as she staggered through days of mind-numbing sleep deprivation, Mutch became intimately acquainted not only with her son, but with the night itself, in all it’s vastness and mystery.

“I tend to think that if he spoke, the night, too, would be different. The spell broken. Night would seem cold and clean and beautiful again. I have stood on the lawn in November wearing five layers of clothes to watch the Leonid meteor showers, or bathe my face in moonlight, or simply to see how immense the sky is and experience that twinge of becoming tiny in its indifferent embrace as it twirls unstoppably. I’ve witnessed aurora borealis, too, when I was twenty-one and floating at night on an Ontario lake in a small rowboat. I slipped over the side to swim in black water, drifted on my back, the dark rim of pines seeming very close. Above me drifted the smudged galaxy, and Leo, Hercules, and Cassiopeia. I floated there, felt myself being erased in the lake’s black ink. And there it was, a brilliant green rolling over the Earth’s magnetic arc, one stream after another. And along with it, a physical presence, a silence, enveloping and dark and honed.”

Born with Down syndrome and later diagnosed with autism, Gabriel began developing a vocabulary as a toddler, but had lost all of his speech by the age of six. During those sleepless nights, Mutch pondered Gabriel’s absence of speech and discovered that there are many languages that are not verbally spoken, that communication comes in surprising forms, including silence, which she observes not only in her son, but in the story of Thelonious Monk being detained by police in the 1950s, and in the frozen desolation of Antarctica.

Jazz and the Antarctic both play major roles in Mutch’s memoir. Jazz is a refuge for Gabriel, and a language he understands and loses himself in. Mutch, clearly a knowledgeable fan herself, plays jazz for Gabriel at home, and they are such regulars at local jazz clubs that several of Gabe’s birthday parties are held in one or another.

Interspersed with Mutch’s recollections of their sleepless nights and her contemplation of jazz is also the story of Admiral Richard Byrd‘s expedition to Antarctica in the 1930s. Mutch read Byrd’s account of his expedition, which included five months of utter solitude living in a hut and barely escaping with his life, during the period of Gabriel’s sleeplessness. Byrd’s isolation and harrowing polar survival struck a chord with Mutch as she navigated nights of isolation and harrowing survival of a different kind; it’s an interesting parallel and juxtaposition.

In the end, this memoir lacks the usual heart wrenching, tear-jerking, and even soapbox-stomping which makes it stand apart. Although there is a patina of melancholy, her telling of “survival in the small hours” during Gabriel’s prolonged period of wakefulness reads like a meditative odyssey in search of a deeper understanding of her son.

Her prose is gorgeous and begs to be savored. As I read, I folded down the corners of many pages because there were so many passages I wanted to reread just to let the words roll over me.

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

[Originally posted on April 21, 2014 here]

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.

The Anti-Romantic Child by Priscilla Gilman

[Originally posted on March 18, 2014 here]

9780061690273 The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman

Where to start?

I honestly can’t decide if I loved this book or disliked it. I suppose both.

In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten. Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia. Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.

When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned. In fact, he resists most forms of physical contact and in many ways appears an island. As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics. At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.

“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well. After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me. There had been no one more familiar to me than my son. I had considered myself totally tuned in to his needs and had accepted him on his own terms. In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would. But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)? Was it a kind of denial, a refusal to help or even accurately perceive him? To question your grasp of your child is to suffer a great loss.”

Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.

Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated. Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:

“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone. Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”

I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.

Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies. Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj. Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.

Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly. I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible, by relentlessly plunging him into therapy after therapy aimed at changing him. Perhaps, however, her summing up of her feelings explains it best:

“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences. Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others. But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is. They are strengths and gifts. I never want them denigrated or dismissed as ‘splinter skills.’ Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’ I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”

It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions. I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her. And yet, she explains very eloquently,

“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis. He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school. I’ve always been ambivalent about the idea of labels. They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj. Would a label make people more sympathetic to him? Or would it get in the way of appreciating the complex, intricate person Benj is? How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids? Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”

But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive. In reality, sometimes they can’t be avoided, for all of their pitfalls.

This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature. Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.

The Reason I Jump by Naoki Higashida

[Originally posted on November 11, 2013 here]

imagetemp13704 The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
by Naoki Higashida

I first heard of this book when Jon Stewart had David Mitchell, a successful author in his own right and the man who translated this book from Japanese to English with the help of his wife, KA Yoshida, on his show several weeks ago. I was intrigued by Jon’s enthusiasm about the book, and although I do not have a child with autism, I do have a child with Down syndrome (which is very different from autism, to be sure), and enough friends with children with autism that my curiosity was piqued. Just being a parent of a child with a developmental disability, I think, makes me curious about other developmental disabilities.

My guess is that when reading this book, whether or not the reader has a close personal relationship with someone with autism probably influences the reader’s reception of the book. A blog I follow that is written by a parent of a child with autism reviewed this book and felt that it was like having a conversation with her son that she has longed for. I felt like I gained some insight into an autistic mind reading this book, but it didn’t blow me away. There have been criticisms of the book elsewhere, and speculation that Mitchell might have taken too much artistic license with his translation and that it might not actually be an authentic reflection of the original author’s thoughts. I have no opinion one way or the other as far as that goes – not having a personal connection to autism, I’m really not in a place to say whether or not this book authentically reflects an autistic mind.

It’s a quick read – I read it in a day. Originally written when Naoki Higashida was 13 (he’s now 21), it’s eloquent, humorous, both precocious and adolescent, and insightful. I was bothered by his constant use of “us autistic kids” and “we” – as if he were speaking for all autistic people. While I’m sure there are commonalities among people with autism, like any other group of people, each are unique; it would therefore be a mistake, I think, to assume that this boy’s experience of autism is the universal experience of autism. What stood out to me most was actually something my husband is fond of saying, and that is, “Everyone is coming from somewhere.” In that way, reading this book gave me pause about my five-year old son who has Down syndrome: even when I don’t understand him, even when he does things that confound me, he’s coming from somewhere.

Definitely worth reading, but I think opinions and perceptions of the book will vary pretty widely.

Sun Shine Down by Gillian Marchenko

[Originally posted on September 5, 2013 here]

Sun-Shine-Down-Cover-250-px Sun Shine Down: A Memoir
by Gillian Marchenko

“I know of other mothers who have children with disabilities, and right away they loved them and decided to fight for them. that isn’t my story.”

In this slim little gem of a memoir, Gillian Marchenko recounts the birth of her third daughter by emergency c-section in Ukraine – far away from her family in her native Michigan. Soon after her daughter’s traumatic birth, Gillian and her husband learn that not only is their new baby very ill, she also has Down syndrome – and this in a country where babies with Down syndrome are still routinely institutionalized from birth.

After leaving their missionary work in Ukraine and moving back to the states, Gillian struggles to come to terms with Polly’s diagnosis. Weighed down by depression, she turns to alcohol for escape and solace, all the while trying to keep up appearances as a good mother, and a pastor’s wife.

Stark and beautiful in its honesty, this is a very human story of a mother struggling to cope with a new reality, and ultimately of a baby who lights the way.

I’ve read a lot of Down syndrome memoirs, and this jewel rises to the top as one of the better ones.