Wednesday, June 11, 2014

Mama Getaways

All mums, by and large, deserve breaks from mothering. No denying that aspects of the job description are rewarding. But for many of us – particularly ones like me who have children with disabilities – the job can sometimes take the living daylights out of us. When the signs are clear that we’re coming to our proverbial Wit’s End, it’s time to recharge. For everybody’s sake. As the saying goes, “If Mama ain’t happy...NOBODY’s happy.”

In my memoir Not Exactly As Planned, to be published in November by Demeter Press, I describe the strains on my marriage from raising our son with fetal alcohol syndrome. I’ll gently sum them up here with the following understatement:“The cups of tea he used to bing me in bed each morning during the first years of our marriage stopped coming.”

However, Robin and I were fortunate enough to have the resources to get away from time to time.

From the book:  “When Robin and I travelled, our problems seemed to vanish as soon as we hit the road. Travel was the key to remembering what it was we loved about being together. It was a magical elixir to our troubled marriage.

Undoubtedly, one of our trips’ positive attributes was the pact we made before we left: we wouldn’t talk about the children. It was always hard the first leg of a trip, but got remarkably easier as we hiked the Bruce Trail, rambled through England’s Cotswolds or ate our way through a Tuscan hilltown. We still called home daily, but never talked much about the kids afterward.

Since Michael had worked his way through all the babysitters in our community, we were always on the lookout for some strong, level-headed young or older adult to stay with the kids during our absences. Someone looking for a challenge – our version of a “handyman’s special.”

I recently read entries from parents who belong to an online chat forum tfor parents of children with FASD. They shared their own creative approaches  to “getting away” when times are tough. sometimes known as running away from home. 

The first posting on the thread that opened the discussion was this:

“Well I may get a lot of backlash for this....but I ran away from home this weekend. One crisis too many and I was beyond overload. Called hubby told him it was his turn to parent 24/7 for the next few days. Got on hotwire. Got me a great rate in a 4 star hotel about 50 miles from home. Told everyone no call no text. I will text I'm ok. Which I did last night and this morning. Kinda nice the only noise I hear is the a/c unit. And no FB for me except this post.”

In response:

“To survive the last two years with all the ups and downs (mostly downs) with our FASD daughter, I found a friend who loves musicals and we began following our favorite musical on its US tour every three or four months. We'd book a hotel, get tickets for two or three shows a weekend and I could finally BREATHE. The cast may have thought we were stalkerish, but what they didn't know was that those weekends saved my sanity. It was expensive but my dh agreed it was worth every penny because I came back human. ;). The tour ended last fall, but we squeezed in a trip to NYC to see a few shows on Broadway this winter and next week we found a regional theatre performing our favorite musical so I'm hanging on by my fingernails for that! One week from today baby!!! People who don't live like this just think I'm spoiled. I've just learned that for my mental, physical, and spiritual health I have to get away.”

And another mum getaway tip:

“I think only we, the fetal alcohol spectrum disorder parents, know this exhaustion! And total desperation! There is an orchestra here in Burlington, Vermont, organized by two world class musicians and called ME2, whose members are made up of people with mental illness or who have it in someone close to them. They are just so excellent and their separate string orchestra is to die for. We recently went to one of their concerts called Music From the Holocaust, certainly mental health related, that will be with me for a long time.

I'm not a musician, but I feel a bond with them. I really think engaging your right brain is important in our situations. I've always loved art, although I'm not an artist, and every chance I get, I love going to exhibits and museums. We live between Boston and Montreal, so special exhibits are somewhat accessible.”

Good for you mums!

What’s YOUR secret to maintaining sanity?

Friday, April 18, 2014

Same Old, Same Old?

Michael has come far since he was diagnosed with Fetal Alcohol Syndrome when he was six. At that time, the prognosis was grim. Although the clinician at The Hospital for Sick Children was clear that early intervention could make a real difference in his life, the diagnosis was irrefutable – Michael was brain damaged. Research at the time was showing that by their adult years, many people diagnosed with FAS would be living on the streets, be on welfare, in and out of jail, and leading lives of quiet desperation.  Only time wold tell.

Our son is now 26. He lives in a group home during the week and is home with us from Friday through Sunday.  We’re happy to have a break from him during the week, and know it’s important for him to develop some independence, which he can in the the semi-independent living environment at the home.

He has become a sweet, mild-mannered young man, kind of heart.

Michael did drop out of school in Grade 9, as predicted. But last year he started a program here in Toronto at the Centre for Addiction and Mental Health (CAMH) to get his GED (high school equivalency), and goes to classes four days a week. To date, he has had no success holding a job, he has few friends, can not manage money, prefers his own company, and would never do his laundry, shower or clean his room unless forced to.

He has become an excellent woodcarver. Several of his carvings have won awards.

The dire predictions made when he was six never came true, but Michael does not function well in the world. He needs family and professional supports daily.

We love our son, always have, and appreciate the many strides he has made in his life.

But something worries me. Last week, when he was home with us, he stole $20 from my purse to buy cigarettes. This is not the first time, and I’m afraid,  this may not be the last.

We saw him with this pack of cigarettes and couldn’t figure out how he got it. We knew he had no money. When asked about it, he started to lie.  With each word, he was digging himself deeper into the proverbial hole. I walked away. I couldn’t bear hearing him making things worse, adding lying to the list of crimes.

The next day, Michael admitted that he had stole the money.  He saw how upset I was. It was obvious he felt remorse.  His eyes filled up. Unprompted, he said he was sorry. He looked miserable, went to his room and threw himself on the bed. I believe he truly was sorry.

The trouble is, it doesn’t mean that the next time Michael is desperate for something (be it cigarettes, candy, a beer...), he will be able to control his impulses.  One of the characteristics of many people with FAS is poor impulse control, not to mention poor judgement.  It’s the nature of the beast.  He doesn’t stop to think about consequences of his action.  In the heat of the moment, he doesn’t care.

That night, I went online to one of my FASD Facebook support groups. I read messages from parents talking about their children who had stole money, food, and other valuables.  Many said they locked up money and everything else hey could. They hid food. One person put food and money in the trunk of her car. Several parents said it was their duty to not to have anything around to tempt their children.  It wasn’t their fault that they stole. It was part of the FASD package.

The children of these parents were all under 10.

At 26, Michael still has impulse control problems. He smokes too much, eats too much, and would drink too much if he could. He tries to cut down on everything, but it just doesn’t seem possible for him. But I did think he had outgrown stealing. It was a real shock to us that he clearly hadn’t.

Though we understand that people with FASD have particular neurobehavioural problems, my husband and I believe we had to hold Michael accountable for his actions.
Perhaps if the consequences are meaningful enough to him, perhaps, just perhaps, he will be able to control his impulses the next time he wants to steal. We have to do something.

Our decision was to not let him come home to be with us the following two weekends after the incident. Why would we want someone in our house who steals from us, we told him. Why would we want to be with someone we couldn’t trust?

Before he could come back, we asked Michael to write a letter to us explaining what he had done wrong;  why it was wrong; why he wanted us to trust him again; and what he was going to do to earn our trust again. We hoped to encourage him to think hard about his actions and to understand that things would have to change before he would earn our trust again.

He followed through.  He wrote some very thoughtful things, but of course, he’s no dummy. He knows what we want to hear.

Michael  is home this weekend and we can see he’s on his best behaviour.  But the truth is, if the opportunity and impulse arises for him to steal again, I’m not completely sure he won’t just go for it. I’ve hidden my purse.

Sunday, April 13, 2014

If Only (I had dared to reach out...)

One of my neighbours in the small community where I live recently had twin boys. One was born with Down Syndrome. The family has one another child, a three year old son.

After the first few weeks providing casseroles and the requisite good wishes, many members of our community, including myself, let the stay-at-home new mother know that we were available to help, any way we could. Just let us know, we said. Not surprisingly, we never heard from her.

Another neighbour, a specialist in CranioSacral Therapy, was working with the child with DS in the family home, and became aware of the many difficulties the new mum was having coping with the new twins, their three year old, and all the demanding special tasks, appointments and care needed by her special needs son.

This neighbour called around, inviting a group of us mothers to a meeting. Once there, we all agreed to commit one hour, one day a week, to work with Cody, the child with DS. The mom would train us to do a series of physical exercises with him, essential to develop much-needed muscle strength. As we would be doing this in the family home, we might also help with the other children, do light household chores, give mom respite –  whatever we or she thinks needed.

The good will and desire of the neighbourhood moms at this meeting was palpable. We were thrilled to help and be told what specific tasks would be the most useful. WE thanked the appreciative new mum for this opportunity.

As one of the volunteer mothers said in an email after our first meeting:  “I have to admit that I eagerly signed up because I so would like to help out, but after my brief cuddle with Cody, I have now fallen in love.   can't wait to see him again.  And Ben (the twin), what a joyous force he is, toddling around and exploring everything on all 4's.  So wonderful.  And then there's you...gracious and courageous, and willing to receive.  It is a gift for us all.”

This is where my “If Only” comes in.

We adopted our son, our first child, when he was seven days old. Fortunately, I bonded the second I laid eyes on him because he was a difficult baby. I was overwhelmed from Day 1. Both my husband and I were clueless how to bring him comfort during his many crying jags and extended periods of obvious discomfort.  Our pediatrician was as clueless as we were.

I seldom, if ever, reached out for help.

In my gut, I had a feeling there was something actually “wrong” with Michael, but no one, including the doctor had any sense of what that might be. So, since there was nothing “wrong,”  my husband and I could only wonder if we were bad parents.  Perhaps he wasn’t sleeping at nights because we weren’t training him properly. Perhaps he cried so much because we met his cries for a bottle or whatever we thought he needed too quickly.  Maybe he needed a stricter hand.  Child rearing books and several glaring neighbours seemed to think so. Who knew, maybe they were right.

I was embarrassed by my inability to cope and bring comfort to our much-adored, but difficult child.

Michael was diagnosed with Fetal Alcohol Syndrome when he was six. Though the birthmother had told the adoption counselor that she never drank while pregnant, she had clearly lied. “We see it all the time,” said the Director of the Child Development Clinic at the Hospital for Sick Children, where he was diagnosed.

At the recent meeting with my neighbours, I couldn’t help but think about all this.

If only I had reached out to neighbours for help in my own hour of need.  What a smart thing to do. Both my child and I would have been better off for it if I had. As a mother, I was so alone, so in need of a helping hand.

Sadly. I now think that If I had known that there was a reason for Michael’s distress other than “poor parenting”, maybe I would have reached out. But I was so insecure, so unconfident and so afraid of glaring, judgmental eyes, I never made the move. And, as another mother of a child with FAS recently pointed out, our children are not  "cuddly" (the way my neighbour's child with Down Syndrome is),

But really, why did I have to know Michael “had” something (with a name) before I was able to reach out.  We mothers can be so hard on ourselves sometimes, in addition to being insecure.

So please, new mothers of adopted children, or any child, don’t be afraid to ask for help from friends, family, and neighbors if needed.  They may see the request, as one of my neighbours did as  “A gift for all.”

Did you have problems asking for help when your child/children were young?

Sunday, August 4, 2013

CBC's Canada Writes Shortlists my story Wolf Howling at Moon

Last February, I quietly entered a story I wrote to the CBC's Canada Writes, their nationwide literary contest, in their Creative Non-Fiction category. Submissions had to be between 1200 - 1500 words and not previously published. I had been working on a new ending to my book, a memoir, nd with only slight editing, it fit their world count. I sent it in. I didn't bother telling anyone, including my husband. We writers are never sure about these things.

So I was thrilled when I received a call in early July from the CBC to tell me that my story had been shortlisted in the Creative Non-Fiction Category. Out of 2700 submissions, my story made it into the top 5.  I couldn't  believe it. My story is a very personal glimpse into our family's life with our son who has Fetal Alcohol Syndrome. People were really interested?

My story, along with an interview with me was then posted (and remains) on the CBC's Canada Writes website (Creative Non-Fiction category).  Stories and interviews of the other 4 candidates were also posted. 

To encourage people to read the stories from these shortlisted candidates, Canada Writes held a Public Vote, asking readers to choose their favourite  from the Top 5. Lo and behold, Wolf Howling at Moon was chosen as the Readers' Choice. More thrilling news.

The nicest thing about having my work posted and up for the Public Vote, is the response I received by dozens and dozens of people throughout the country, telling me why my story resonated with them. Some had children with special needs. Most did not. They just found the story touching in a way that was meaningful to them. They appreciated my hosesty. They found the writing economical and powerful. They cried. They shared stories about their own children. Many felt my story made them fell more optimistic about  their own child.  How very gratifying.

So dear bloggers, I'd like to share my story, Wolf Howling at Moon, with you, as well as the interview the CBC did with me. In the interview,  I talk about how I came to write the story as well as about my son and Fetal Alcohol Syndrome.

I hope you read and enjoy both.  And make sure to note the photograph of my son Michael's woodcarving, Wolf Howlign at Moon, which gave my story its name.  He is so very proud to see his carving online.

The links are below:

The story:

The interview:

Wednesday, March 13, 2013



Destruction or slaughter on a mass scale, esp. caused by fire or nuclear war: "a nuclear holocaust".
The mass murder of Jews under the German Nazi regime during the period 1941–45.

I am not a fan of what is referred to as Holocaust literature. Not because I don’t think it needs to be read. It does, but by everyone else on earth, just not by me. I have already consumed my quota of books, lectures and films on the Holocaust. As a child in the 1950s, I remember sitting in my seat at school, equally riveted and horrified as I watched firsthand newsreel footage taken by Allied soldiers upon liberation of concentration camps. The images still haunt. 

An estimated 11 million people were killed during the Holocaust. Six million of these were Jews.
What more do I need to know about the horrors. Nothing. Or so I thought. 

Late summer, 2012, I received a notice from the Ryerson School of Continuing Education. In conjunction with the Azrieli Foundation, they had created the Sustaining Memories Project, and were looking for “Partners,” or writers, to work with Holocaust survivors who wanted, and needed help, to write their memoirs. To my surprise, I was interested. More than. I signed on the dotted line.

I grew up in the 1950s with Holocaust survivors in my midst. My grandparents had left Russia and Poland in the early 1900s to escape pogroms. Their neighbours, from the shtetls they had come from, weren’t all so fortunate. Those who had stayed and somehow survived the concentration camps thereafter, arrived in my hometown Detroit after the war,  many on my grandparents’ doorsteps. I was five years old when I asked my father why the lady I was looking at had blue numbers written on her arm. Not surprisingly, he had no answer a child could understand.

I have now completed my partnership with an 82 year-old survivor from Romania. Together, we wrote a memoir of  her life before, during and after deportation to a concentration camp. She was 10 years old when she and her family were herded into the cattle car that transported them to the river Dniester, then barged across the water into Ukraine where they remained for the next four years. She lost thirty-six members of her family during those years, including her grandparents. She was fourteen when the Soviets liberated them. 

I met with F., my holocaust survivor partner, for five meetings. I interviewed her, sometimes as long as two hours. I taped these interviews, transcribed them, then worked on creating a cohesive story from all that she told me. She did more work than me, however. It was her story, after all. A story, like the arm of the woman I remember as a child, indelibly printed.

It would be an understatement to say that it was painful listening to F. At times, I wanted to stop our interviews. I wanted to protect her. I couldn’t bear taking her back to such dark places, such dark times, to such evil. But we never stopped. We went there and we went beyond.

Fortunately, what will stay with me from my experience, now completed in a 150-page memoir, is not the dark places or times. My holocaust survivor is just that, a survivor. After release from the camps at age fourteen, F. put together a life of grace, integrity and purpose. Yes, she still suffers from anxiety attacks and haunting dreams. But the hatred and inhumane acts of others did not manage, somehow, to contaminate or destroy her.

I am grateful for the time I spent with F. and grateful that I could help her tell her story –   a story I think everyone in the whole world should know about - including me.

Friday, March 8, 2013

The Manuscript Whisperer

Writers prefer not to admit it, but many, if not most have a manuscript of some sort sitting forlorn, but not forgotten, in a desk drawer or computer folder labelled “Finished Manuscript.”

We dedicated a chunk of our lives to write something that we have since tucked away upon completion, with plans to hone it to perfection at a later time. Or, after honing, we had sent the little darling out into the world with hopes of publication, only to have spirits dashed. After enough rejections, back to the desk drawer or folder did the manuscript go. It is at this point, we consider self-publishing.

I recently helped a woman write her memoir. “I think people cross our paths for a purpose, ” she told me, keenly aware, as I was, that we met only by chance. Both our lives have been enriched by the serendipity. 

I feel the same way about Beth McAuley, Toronto editor and owner of The Editing Company, (TEC) who also found her way to me, or was it I to her? Whichever, I am grateful. Beth has my become, nothing short very own Manuscript Whisperer.

With calm voice and steady hand, Beth has led me back to my manuscript, a memoir that has been languishing, forlorn but not forgotten, in my own computer folder under the title “Book, Finished.”

But it turns out that with Beth’s gentle guidance, I have come to see that “Book, Finished,” was anything but.

Writers are often considered a sensitive lot, and I am no exception. It has been difficult for me to come back to a manuscript that was met with rejection after I sent it out to agents several years back. Response was kind, but clear: great writing, good subject, not commercially viable. Good luck.

With each rejection, confidence in my ms plummeted.

It took me two years before I had the courage to venture forth again into the world of publishing. And when I did, Beth crossed my path, as it seems, for a purpose.

I let Beth read my manuscript, and somehow after her reading, she was able to provide just the right amount of encouragement and criticism (constructive, only), to buoy my deeply dulled spirits. Who wants to set themselves up for rejection (again).

But Beth, with her quiet but persuasive ways, was able to coax a modicum of enthusiasm out of me. With the solid direction she was willing to provide, I began to think, “It’s a crap shoot, but I’m going to try one more time for a publisher. I’ll give it my best shot.”  I was clear, though. I wanted to do only so much work, and Beth had to tell me what to do, every step of the way. One does get a little tired of being one’s own  cheerleader after awhile.

That was six months ago. The rewrites and editing are done. We’re now pulling together  submissions for publishers. The book is good, I have a story to tell, and that story should be read.

Besides the requisite hand-holding to get to this submission stage, Beth has created a new structure for my book, undertook laborious editing, and reworked my story to provide greater focus and arc. I did as I was told.

As a true Manuscript Whisperer should, Beth tamed the bad bits, brought out the good ones.

I know not what will happen next, and do not allow myself to look too far ahead.

I do know that I did exactly what I said I would in a moment of great optimism. I went for “it” one more time, and gave it my best shot. Without Beth, I couldn’t have done either.

Monday, July 30, 2012

An essay worth re-reading: Welcome to Holland

I’m buying a new computer soon, so started to clean out files today in anticipation of the transfer from old to new. A real spring cleaning was in order.  I’ve got dozens and dozens of documents stored away that I no longer need, not to mention, dare I say, hundreds of emails that should have made it into Trash, or at least folders, years ago. 

I found plenty of junk to delete, including plans for trips taken and files on subjects I’m no longer interested in. But I also found precious documents and correspondences that I hadn’t looked at in years. Coming back to them now was like reading a diary from years past. My files and emails tracked my life and the people in it.  I loved the email from my daughter telling me how much she loved me, and felt rather proud while rereading an essay I had written years ago for a diabetes education course I had taken.

One of the documents I had saved on my computer maybe ten or more years ago, then proceeded to forget about it. It's an essay called “Welcome to Holland”, written in 1987 by Emily Perl Kingsley. I remember first reading it relatively soon after our son was diagnosed with Fetal Alcohol Syndrome (as it was called then), and finding it quite brilliant, and even helpful as I began taking my first steps toward adjusting to the realization that my son had a disability.

The essay, written in the second person, employs a metaphor of excitement for a vacation to Italy that becomes a disappointment when the plane lands instead in Holland.

 "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

I’m glad I found the essay again in my files. It’s one I won’t be deleting. I think it’s so good, I’d like to share it with you. Many of my readers may already be familiar with “Welcome to Holland”, but for those of you who aren’t, I hope it’s a pleasant, eye-opening and even inspirational read. 

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.