Rosenbaum discusses her new book ‘Not Exactly as Planned’

ShalomLife

Exclusive: An Interview With Author Linda Rosenbaum
Rosenbaum discusses her new book Not Exactly as Planned which tackles the challenges of raising a child with fetal alcohol syndrome (Ed. note: Linda’s book is available from FASworld – go to FASDepot to order)
By: Caitlin Marceau
Published: June 11th, 2015

If you’re looking for the next great read, then look no further. Linda Rosenbaum’s new book Not Exactly As Planned is full of heartbreak and triumph as she navigates the rocky road of adoption and raising a son with fetal alcohol syndrome. This critically acclaimed book talks about her son Michael, who was born with fetal alcohol syndrome, and his battle with alcohol abuse long before he’s old enough to take a sip.

We at Shalom Life got a chance to speak with Rosenbaum about the inspiration for her new book, the challenges of fetal alcohol syndrome, and navigating the waters of adoption.

Shalom Life: What was the inspiration for writing Not Exactly As Planned?

Linda Rosenbaum: Over the years, people have encouraged me to write a book about our family, particularly about raising our son with Fetal Alcohol Spectrum Disorder (FASD). As a writer, I did have a story to tell, but I think a memoir needs a broader, more universal theme.

I knew I was not the only person whose life didn’t go exactly as once planned, and thought that by telling our family’s story, I could touch upon the feelings of hope, loss and acceptance that so many of us experience while trying to adjust to some of our unexpected realities.

I grew up in the US in the 1960s, in a time of turbulent political and social upheaval. Like many idealistic individuals in my generation, I believed that the world could be changed for the better. In later years, while raising our adopted son – diagnosed with FASD when he was six – I learned the hard truth many in my generation learned: we can’t fix all that is broken.

This was a hard reality for me to face, and one that I’ve come to learn is common for many people, not only those of us who have children with disabilities. Our challenge is to live with the reality of our lives, rather than what we may have once hoped for.

Besides the personal reasons for writing my story, I also wanted to make people more aware of FASD, the most common, yet most preventable cause of developmental disability in North America.

Most people, including many doctors and social service workers, remain unaware of FASD and the profound effects it has on individuals and their families. It’s been my hope that my book will bring comfort and hope to families struggling to raise children with FASD and other special needs, and give professionals who work with these families a better understanding of the day-to-day challenges we live with.

What was the hardest part of writing the book? And what was the most rewarding?

The most difficult part about writing the book was reliving past experiences that I would have preferred not to revisit. But I knew that the poignancy of those moments, told honestly, bring the emotional honesty and authentic drama needed to make a memoir compelling. There was no point in writing a memoir if I was going to gloss over the tough stuff. And editors can tell when you’re leaving the juicy stuff out, anyways!

One particular chapter I found rough to write was when we took Michael to the Hospital for Sick Kids to find out if there was a diagnosis to explain his many physical, emotional and behavioural problems. He was six. After a series of tests and interviews, Michael was diagnosed with Fetal Alcohol Syndrome – brain damage caused by the alcohol his birth mother drank while pregnant with him. I could barely write a word in this chapter without crying.

Some people say it’s cathartic to write about the difficult times in your life. I personally didn’t find that to be true. I’m happy for other people that they should they be so lucky. Fortunately, I had a lot of joyous family moments to write about as well.

Another difficult part about writing the book was ensuring that my family members were comfortable that so many details of our family’s life, including the difficult ones, would become public. My husband, who has been a filmmaker his whole life, gave me complete editorial reins. Our daughter Sarah was a bit wary about me including some material, particularly about her teenage years, and I respected her wishes about what went into the book and what did not. If Sarah was truly upset about something, I left it out. My “art” will never be more important than my family.

The hardest part of the permission process was getting Michael to understand why I was writing the book, and that it would include stories about his disabilities, and how our family dealt with them. I knew Michael most likely would never read the book, because he’s not much of a reader, so it was essential to let him know in advance what it was going to be about.

I read him passages as I went along, and made sure that he knew the wonderful stuff about his many accomplishments, like his bar mitzvah, were also going into the book. Michael seemed very comfortable with the idea of the book, and once it was launched, loved the attention he was getting because of it!

The most rewarding part of writing the book has been the response. Not a day goes by that I don’t get an email from someone telling me how much the book meant to them. They all say pretty much the same thing. “I couldn’t put it down.” Above all, I wanted to write a book that was a “good read.” Of course, I’m also very touched by the many people who tell me that the book made them feel less alone, and less crazy. They realize they’re not the only ones feeling the way they do. They thank me for being so honest about my feelings and for my willingness to share them openly. I took a lot of risks when writing the book, and often thought I might be crazy to reveal as much as I did. But now I think my honesty paid off.

Why did you choose to adopt?

I began having gynecological problems in my teens, and was diagnosed with PCOS (Polycystic Ovarian Syndrome) in my early 20s. PCOS is the most common endocrine disorder among women between the ages of 18 and 44, and a leading cause of poor fertility. So from a young age, I knew I might not be able to conceive and when that came to be, both my husband and I were open to adoption. We knew we wanted to be parents. We didn’t care how.

What was the hardest part of the adoption process?

The uncertainty. Not knowing whether you will “find” a child, and if so, when. Not knowing if the child you “find” is the “right” one, or if there is such a thing. So much is out of your hands, out of your control. Most of us aren’t used to that. Though no baby comes with guarantees, including the ones you give birth to, there are even more uncertainties with adoption.

What was the easiest part of adopting?

Loving our children. Both my husband and I bonded with our children the second we laid eyes on them. When the nurse first placed Michael in my arms, I could feel a bit of his soul enter mine. Same with Sarah.

I have no doubt that this early bonding helped us tremendously during the difficult times we had with Michael, which began soon after bringing him home when he was seven days old.

Do you have more information about FASD that you’d like people to know about?

Knowledge about FASD has always been below the public’s radar. Though most people know about Autism Spectrum Disorder/Asperger’s Syndrome and Down Syndrome, most are unaware that Fetal Alcohol Spectrum Disorder is the leading cause of developmental disability in North America, with rates higher than both these other disorders. And unlike those, FASD is wholly preventable. The message is clear: don’t drink while pregnant. Why play around with the life of your child, and your own as a parent?

Unfortunately, FASD remains underdiagnosed, misdiagnosed and misunderstood. Some people with FASD never get diagnosed because symptoms are often similar to other problems, like ADHD, learning disabilities or what parents might call “bad behaviour.”

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioural and/or learning disabilities with possible lifelong implications.

Every individual with FASD is different, depending on the severity of brain damage, but symptoms an individuals might experience include:

Low birth weight; developmental delays; poor coordination/fine motor skills; poor social skills, such as difficulty building and maintaining friendships and relating to groups; learning difficulties, including poor memory, inability to understand concepts such as time and money, poor language comprehension, poor problem-solving skills; and behavioural problems, including hyperactivity, inability to concentrate, social withdrawal, stubbornness, impulsiveness, and anxiety.

How has FASD impacted your life?

We adopted Michael when he was seven days old. He had problems right from the get-go. He was sensitive to light, sound and touch. He wasn’t meeting developmental milestones, cried incessantly for long periods of time, and just seemed uncomfortable in his own skin. We believed something was wrong with him, but the doctors kept telling us everything was okay and just go home and relax. When Michael reached public school, things really began to fall apart, and at that time, I insisted that our pediatrician give us a referral to Sick Kids to see if there might be a reason (other than bad parenting, as suggested!), that Michael might be having so many problems. So at the age of six, Michael was diagnosed with FASD.

To this day, the life of every member of our family has been enormously affected by FASD. To this day Michael has support to help him function in the world.

Without the constant advocacy on behalf of Michael throughout his life to obtain the services, supports and accommodations he has needed, Michael would never have come as far as he has.

Michael is now 28 and lives in a group home. From Friday through Sunday he lives with us in our family home on Toronto Island, where he and our daughter Sarah grew up.

Though Michael dropped out of school in Grade 9, he has recently gone back to get his GED, high school equivalency, through CAMH, the Centre for Addiction and Mental Health here in Toronto.

He has also become a wonderful woodcarver. Several of his carvings have won awards in both the Canadian Wood Carving Championships and the Ontario Wood Carving Championships. A story I wrote about one of his carvings, “Wolf Howling at Moon” won the 2013 Canada Writes Reader’s Choice Award for Creative Non-Fiction.

Photos of Michael’s wood carvings can be found on my website at lindarosenbaum.com.

If your readers could take away one message what would it be?

I think the strongest message in my book is one of hope. With time, patience, love, hard work and a good deal of luck, most of us can face our challenges and live a life with both grace and humour.

Have you done any reading, speakings, or presentations since the book’s release?

Since publication, I have had the honour of speaking about FASD and/or adoption, as well as our family experience, at professional and family-based conferences and workshops. I have also given readings, including one at local synagogue and at book clubs. I would be happy to hear from individuals or organizations who might like me to speak or provide readings from the book.