10 Things I Learned from Raising a Son with FASD (but didn't know until I wrote a book)

I had the wonderful opportunity on March 28 of being the Keynote Speaker at a conference in Toronto for caregivers of children with FASD sponsored by FASD ONE (Ontario Network of Expertise). and beautifully organized by Sharron Richards and her team.

The invitation to deliver the speech was based on the publication of  my new book, Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love.

Parents, other caregivers, individuals living with FASD and a smattering of professionals came together at the Children's Aid Society (CAS) of Toronto to share our knowledge and first-hand experience of raising and working with children with FASD. In addition, several presenters gave us the opportunity to gain insight and understanding of their own experience of  living with FASD.

Like many other parents struggling to raise their children, I was unaware of how much I had learned over the years from my experience.  More often than not, I didn't know what I was doing. What did I know about raising a child with FASD?

But while writing my book, I realized how much I really did know about raising a child with special needs.  I learned the hard way – on the job – like the rest of us.

So when it came time to write my speech, I just looked back over the 27 years we have been raising our son, and a ton of lessons-learned came flowing back to me.

I won't go into detail here about any one of these lessons-learned, but I will get you the overview 10 points I discussed at the conference.

While giving the speech, I felt reassured that I was in a roomful of caregivers who understood what I was saying. I watched heads nod in agreement as I moved from talking about one point to the next.

 The Ten Things I Learned While Raising my Son with FASD: 

1. More often than not, I didn’t know what I was doing.
  I was learning on the job.
2.  I needed to protect myself from people who judge me or my child.
3. I often felt guilty about some of the negative feelings I was carrying around (particularly regarding the people who were judging me). 
4. I needed to seek out other caregivers who shared similar struggles and sensibilities.

5. No one loved our child as much as my husband and I did (and understanding this has major implications regarding the need for advocacy). 

6. Mums get a bad rap.
  (Dads don't get blamed as much as mums).
7. Raising children with disabilities is hard on marriages.

8. I never stopped being overjoyed by even the smallest thing when it came to my son’s accomplishments.

9. I couldn't  fix everything in my son's life. The best I could do was learn to accept the reality of "what is."

10. There is always reason for hope. Even when there doesn’t seem to be any reason for hope, there is reason for hope
     
    
    Where to purchase Not Exactly As Planned
    http://www.lindarosenbaum.com/buy-the-book.html

Not Exactly As Planned "A Must Read" says Disability Activist

Since my book was published last fall, I have been honoured by the many letters and emails from people all around the globe, thanking me for writing the book, and letting me know how it has resonated with their own lives.

Today I received a book review from a well-respected activist in the "disability community," and am honoured by both her generosity of thought and words.

Allow me to share them with you:

From Donna Thomson, author of The Four Walls of My Freedom

Thursday, 30 April 2015
Not Exactly As Planned - A Must Read Book About Family and Disability

It was months ago that I added to my reading list 'Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love' by Linda Rosenbaum.  But it was just this morning that I turned the last page and regretfully said goodbye to the Rosenbaum-Christmas family of Toronto Island.

Linda Rosenbaum and her husband Robin Christmas have two adopted children, but only one, Michael, who struggles with the effects of Fetal Alcohol Syndrome Disorder, or FASD.  Michael Christmas is a young man now, an accomplished wood carver who has learned how to be in the world through the love of his parents and sibling - a love that is imperfect but unwavering as in all the families I know who are raising children with developmental disabilities.

I cannot tell you how much I loved this book.  Linda Rosenbaum doesn't just tell us the story of her adoption or of raising a child with learning and behaviour challenges.  She tells us the story of her life and what meanings her family disability narrative held for her.  We learn the secret of Linda's maternal grandmother's mental illness.  We learn the vital importance of rites and rituals in bringing calm and order to families burdened by chaos and unpredictability.

But there's a more personal reason that I loved this book.  I too have a family history that impacted the way I felt about Nicholas' diagnoses.  Witnessing my father having a post-stroke grand mal seizure when I was 17 made me paralyzed with fear when Nick received a diagnosis of epilepsy.  I too struggled with serious depression and anxiety when I was a young student (I blogged about that part of my life HERE).  We are all a product of our experiences and that fact is revealed in harsh light when mothers and fathers struggle to be good parents to their children with developmental disabilities.

So many of Rosenbaum's words resonated with me.  Take this reflection, for instance:  "Parents often differ, but with a disabled child, the stakes feel higher.  We continuously wanted to 'correct' or teach or model.  We we had the power to 'fix'.  Every move counted."

Or this:  "I began sobbing.  What if my tears never stopped?  This is something for serious criers like me fear: that once we let ourselves go, we may never come back.  Shouldn't we know by now that crying, like life and a good story, has a beginning, a middle and an end?  Yes, perhaps I should have known.  But it's hard when I never know where the story is taking me next.  I kept crying."

I wager that every mother of a child with disabilities has experienced the panicky, out of body experience of sobbing long and hard, fearing it will never stop.  I have.

This book is not just about Fetal Alcohol Syndrome and it's not just about adoption.  It's about family, personal histories and the effects of disabilities on our children and all who love them.  I urge you to buy this book and then to look at Rosenbaum's website as I did this morning.  Her family photos and stories are a wonderful adjunct to her book.

NOTE:  I am honoured to serve on the board of NeuroDevNet, a Canadian Centre of Excellence that funds research into neurodevelopmental disabilities, including FASD.

A Caller From St. Sault Marie

One of the nicest perks from writing my book has been receiving emails and calls from readers.

They are thanking me for writing Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love.  They relate to my stories about the ins and outs of adoption. They relate to the challenges (and joys!) of raising our son with Fetal Alcohol Spectrum Disorder.  They thank me for me honest about the  ups and downs many of us face.


People share their own stories with me. And mostly, they thank me for making them feel less alone in their struggles.

A great response to my book came in yesterday.  I received a call from a woman who lives in a small northern Ontario town. She had heard about my book on the CBC, and ordered it from an online bookstore (Chapters/Indigo).

Karen also thanked me for writing the book. Though her life is very different from mine, she has raised two children, a boy and a girl with FASD, now adults in their 20s. Karen has had her share of hardships. Her children are older, like mine, and her life is still very tied up with caring for them.  She realizes it may always be so.

Her marriage split up, as many do due to the stress of raising difficult children. But Karen has friends to support her and a strong will.  She's a survivor. 

At the end of our conversation, Karen said, "When I save up enough money, I'd like to buy 10 copies of your book to give away. I want to give one copy to the Children's Aid Society here. Another to the guidance counselors where my children went to school. Another for the local library and community centre. Another for the Native council office..."  I was greatly touched by her desire to spread the word about FASD and the struggles families like ours experience raising our children with the disorder.

Her comment about giving out copies of my book have been on my mind since she and I spoke. I kept wondering whether I should have offered to send her copies.

I received a call from her again this morning. "Just wanted to let you know that I ordered 10 copies of your book. Decided i really wanted to do it."

I let her know how generous I thought she was, and how thrilled I was that she would be passing my book on to people who would clearly learn a lot from it. What a kind gesture.

The next time I wonder whether or not I was crazy to bare my soul the way I did in the book,  I will think about Karen't phone call. I have no doubt it will banish all such thoughts.

At least momentarily.

Not Exactly As Planned  is available on Amazon

My Memoir Now Available in additional outlets....

I'm pleased and thankful that interest (and sales!) is growing for my book, Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love. 

Not Exactly As Planned is the story of our family's challenges, and joys, of raising our son with Fetal Alcohol Syndrome. Michael was adopted-at-birth and diagnosed when he was six. I became determined to help Michael beat the dire progrnosis given, and to live with as much joy as possible while learning to live with our new reality.

Media attention for the book on the CBC, and the Toronto Star right after publicatio has been grand. I have also been lucky getting such positive response on Twitter, Facebook, in parenting magazines and with interviews with leaders in the field of Fetal Alcohol Spectrum Disorder (including David Gerry and Michael Harris).

Word-of-mouth seems to be doing wonders as well. I am receiving heart-warming emails (and even hand-written notes posted by mail!) from people around North America who have heard about the book from someone else. Can't get enough of these emails! :-)

Many people are using the exact same words:  "Couldn't put the book down."  As if I wrote a thriller or something. What nicer words could a writer hear?

Because of growing interest, Not Exactly As Planned is now available in Toronto at the following bookstores (and can be ordered online from the following as well):

Ben McNally Books
Another Story Book Shop
Parentbooks


Now online at Chapters/Indigo, and available at both Amazon.ca and Amazon.com in paperback and Kindle editions.

But please, if at all possible, please order the book through my distributor in Canada, Brunswick Books.  

Support our Canadian book publishing industry and bookstores!!

And thanks to all.  Keep spreading the word!

Post Book Launch Blues?

Everyone asks, "Has it been a letdown?"  They're referring to the aftermath of the book launch for my new book, Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love. It was held here in Toronto on November 18 at Ben McNally Books.

My answer?  Not yet.

The launch, as one twitter follower called it was a "crowd scene." I was so pleased to look up from my book-signing desk to see more than 120 smiling faces of family, friends, colleagues, neighbours and people who have worked with out family over the years. They had all come out on a stormy windy night here in Toronto, and they deserve big credit for doing so. It was the perfect eve to be home, sitting in front a fire and listening to the wind howl. But they chose my launch.

There they were, drinking bubbly, eating the wonderful homemade tapas made by neighbours. If you can use the term tapas for  creamed herring and smoked salmon and cream cheese on pumpernickel, among more tapas-like choices.

Fortunately for the bookseller, it was a book-friendly crowd, and more than 100 books were sold at the launch. My understanding is that the number is high for a launch, which added to my pleasure with the evening. The bookseller seemed happy, too.

Forty minutes after the evening began, I did a reading of two short excerpts from my book. Since it's a memoir, largely about our family (with all its joys and challenges), I picked one passage about our son Michael and one for our daughter Sarah. Equal opportunity parenting. I couldn't possibly have honoured one and ignored the other on such a big day. So I picked sweet, and what I would call upbeat passages to read about each of them as newborns. Limited any chance of them squabbling about factual correctness! Though the passages were sunny and bright, when I looked up for a breath from my reading, I barely found a dry eye in the house.  I was touched, and clearly the audience was too.

So to the question everyone asked the next day, and are still asking: "Has it been a letdown?" I can honestly say, not yet.

Response has been wonderful to the book.

I was worried, because the book is filled with raw emotion about raising our son with Fetal Alcohol Syndrome; about infertility and adoption, about life going, as the title of the book says, "Not Exactly As Planned."  The sub-theme about the challenges of learning to live with one's reality (as opposed to our hopes and dreams) seems to have struck a chord.

"Can't put it down." "Read it in one reading." "You're so brave to share so much about your life, your marriage..."  "So honest. It's imspiring."  "I relate to everything you say and don't have a child with special needs."  "The narrative just sucked me in. I stayed in the bathtub for hours." Lots and lots of bathtub reading. Along with wrinkled skin, I'm presuming.

Media interest has also been great. I did a wonderful interview on CBC's Fresh Air, their weekend morning talk show.  Here's the link. Interview focuses mainly on adoption.  https://soundcloud.com/cbc-fresh-air/linda-rosenbaum-on-adoption-and-fetal-alcohol-syndrome-nov3014

The Toronto Star is publishing an article this week about the book. More interviews in the make. Interest growing.

The emails and queries keep coming.
I'm still riding high.
Gonna stretch this out as long as I can before my time is up.  "In the future, everyone will be world-famous for 15 minutes," said Andy Warhol. I'm hoping for 16.
Big thanks to all for getting me here.

To order Not Exactly As Planned:  http://brunswickbooks.ca/Not-Exactly-as-Planned/   or Amazon. com, Amazon.ca or Chapters/Indigo.ca

Release of Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love

Not

I'm thrilled to announce the release of my new book.  It arrived from the printer yesterday, and it was quite the rush holding a copy in my hand for the very first time. It's been years in the making. I have to admit, a few tears fell from the corner of my eyes.

I gave two readings yesterday from the book at a conference at Ryerson Unversity here in Toronto, called Motherhood in Literature. I was on a panel with five other writers who also read from their works, all good, all well-written and interesting.

I have many people to thank who supported me on my extremely long journey through the nail-biting writing and equally nail-biting publishing process.

A good editor is worth his/her weight in gold, and I was lucky to have several great ones, probably in the platinum category. They included Canadian author Merilyn Simonds, writer Renate Mohr, and Beth McCauley, senior editor at The Editing Company in Toronto. And, I'm of course grateful to Andrea O'Reilly from Demeter Press for publishing my book.

My biggest thanks goes to my family, who allowed me to tell our story, MY way. 

To purchase Not Exactly As Planned online:  http://demeterpress.org/notexactlyasplanned.html

And please visit my website at:  lindarosenbaum.com



Here's a  Synopsis of the book:

Not Exactly As Planned chronicles Linda Rosenbaum’s arrival in Toronto in 1970 from the US after political upheaval and sexual violence in Washington, D.C. casts her on an unexpected journey north in search of safe haven. She lives a counterculture life in communes in Toronto’s American ex-pat community, eventually moving into the city’s mainstream. A move to Toronto Island, marriage, and parenthood through two unorthodox adoption processes finally bring a sense of safety and belonging.

Life takes a major turn when Linda’s son, adopted-at-birth, is diagnosed with irreversible brain damage from fetal alcohol syndrome when he is six. She was determined to change Michael’s prognosis, illustrating the expectations that those raised on the activism of the 1960s brought to their lives and families. She no longer fights for other people’s sons — picketing for civil rights or demonstrating to bring soldiers home from Vietnam. She has to fight for her own son.

According to statistics at the time, fetal alcohol syndrome (FAS) was a sentence to failure in his life: he'd drop out of school; he'd be incapable of holding a job; he'd live on welfare, on the street or worse. The brain damage, they said, was irreversible.

With love, devotion, hope and all the medical knowledge she could accumulate, Rosenbaum sets out to change the predicted course of events. Though truth of the old Yiddish saying “Man plans, God laughs”  was testing her, she is determined to have the last laugh. She confronts the sexual violence in her youth; raises her children Jewish even as they share their father’s last name of Christmas; fights to save the iconoclastic Toronto Island community from developers’ bulldozers; and resolves to live with as much joy as she can while struggling to beat Michael's odds.

With compassion and humour, Not Exactly As Planned weaves the disparate threads of Rosenbaum's life into a story of acceptance, at once achingly unique yet universal to all parents.  Not Exactly As Planned  is a provocative story about hope, loss and acceptance.

My Memoir, Not Exactly As Planned, fall 2014 release

                              Not Exactly as Planned
                              A Memoir of Adoption Secrets and Abiding Love

                                         Book launch in Toronto
                                 November 18, 6:00 - 8:00  p.m.
                                         Ben McNally Books

 
My life took a major turn when our son, adopted at birth, is diagnosed with irreversible brain damage from fetal alcohol syndrome. I am determined to change Michael’s prognosis and live with as much joy as possible while struggling to accept my new reality.

Not Exactly as Planned is more than a story of motherlove. It’s about birdwatching, bar mitzvahs, the collision of '60’s ideals with the real world, family secrets and woodcarving.

The book, published by Demeter Press will be available October, 2014. 
 
                                                 order here

Why I wrote the book:

Fetal Alcohol Spectrum Disorder affects an estimated one percent of all children born in North America. Yet, despite being the most common cause of developmental disability, most members of the public are unaware of it and of the ways it profoundly affects the lives of individuals and their families.

It is my hope that the book will bring comfort and hope to families struggling to raise children with FASD, and bring to professionals who work with these families a better understanding of the daily struggles these families live with.


Synopsis of the book:

Not Exactly As Planned chronicles Linda Rosenbaum’s arrival in Toronto in 1970 from the US after political upheaval and sexual violence in Washington, D.C. casts her on an unexpected journey north in search of safe haven. She lives a counterculture life in communes in Toronto’s American ex-pat community, eventually moving into the city’s mainstream. A move to Toronto Island, marriage, and parenthood through two unorthodox adoption processes finally bring a sense of safety and belonging.

Life takes a major turn when Linda’s son, adopted-at-birth, is diagnosed with irreversible brain damage from fetal alcohol syndrome when he is six. She was determined to change Michael’s prognosis, illustrating the expectations that those raised on the activism of the 1960s brought to their lives and families. She no longer fights for other people’s sons — picketing for civil rights or demonstrating to bring soldiers home from Vietnam. She has to fight for her own son.

According to statistics at the time, fetal alcohol syndrome (FAS) was a sentence to failure in his life: he'd drop out of school; he'd be incapable of holding a job; he'd live on welfare, on the street or worse. The brain damage, they said, was irreversible.

With love, devotion, hope and all the medical knowledge she could accumulate, Rosenbaum sets out to change the predicted course of events. Though truth of the old Yiddish saying “Man plans, God laughs”  was testing her, she is determined to have the last laugh. She confronts the sexual violence in her youth; raises her children Jewish even as they share their father’s last name of Christmas; fights to save the iconoclastic Toronto Island community from developers’ bulldozers; and resolves to live with as much joy as she can while struggling to beat Michael's odds.

With compassion and humour, Not Exactly As Planned weaves the disparate threads of Rosenbaum's life into a story of acceptance, at once achingly unique yet universal to all parents.  Not Exactly As Planned  is a provocative story about hope, loss and acceptance.