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

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

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. 

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 bring 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 for 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?

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.

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?

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.

A lovely essay from my son's tutor

To those of you who have read my blogs recently, you may remember that I wrote about the wonderful neighbour who tutors my son each week. She is a former teacher, now retired, with no specific special education qualifications. But that doesn't stand in the way of her being a fabulous and rich addition to Michael's life. Each Saturday afternoon at a quarter to four, he rushes out the door, hops on his bike and rides over to Ann Lacey's house for his one hour tutoring session.

I'd like to share with you a short piece that Ann wrote about her experiences with Michael.
                                           *     *    *

   
Michael slips quietly in the door, holding a cellophane wrapped piece of carrot cake and a cold can of  Coke. He is early, as usual, by 10 minutes. There is a moment of confusion at the door as the musicians (who have been playing jazz tunes with my partner Dwight all afternoon) gather all their boots and clothes and instruments, and squeeze past him out the front door.
”Hi, Mike!”  they all say.

I catch Michael’s  eye and smile. We are glad to see each other, we like each other.

I am keenly aware that the mild chaos at the front door  is just the kind of confusion and overstimulation that I am not supposed to be providing for Michael when I tutor him. He needs quiet, predictable routine, clear goals; Michael has FASD (Fetal Alcohol Syndrome Disorder, brain damage caused by the alcohol his mother drank while pregnant with him). Michael is now 25.
   
My friend Linda has asked me to tutor her son Michael, who dropped out of school in Grade 9. Michael has told her he’s  interested in passing his GED, and maybe even obtaining a high school diploma. I know little of his school history, but know it has been fraught, and that his learning disabilities are complicated. While I have taught a wide range of children, I have no special education qualifications and no understanding of FASD. But I am interested and willing to give it a try. I tell Linda yes, I will tutor Michael.

Within minutes of the confusion at the door, Michael and I have slipped into my tiny teaching room and are immersed in our book, The Hunger Games. It is a dark story set in a not-very-friendly future, but Michael likes it, and I follow his interests as best I can. I take notice of whatever attracts him, because it gives me clues as I try to understand what makes him tick. There is a great deal going on inside this young man. But expressing it is difficult for him.

We take turns reading out loud, a few pages at a time, trying to finish one chapter each week. We pass the book back and forth when we feel ready. His reading has improved in all ways, and in the most important of ways: he expects the text to make sense.This is an important transition for a reader, and serves as an anchor for further reading development. He used to read through the punctuation, and then get into a muddle of misunderstanding. Now he reads until he understands, sometimes going back over it  more carefully, finding the meaning.

We have read happily through a number of books, including a long and text heavy (not many illustrations) book of Native myths, the Story of Erik the Viking and numerous newspaper articles I have picked out for him. When we finish reading our chapter, we talk and make a quick list of a few words to remind ourselves what is happening, so we can dive in again next week. Sometimes we talk about the chapter or new words or things we didn’t understand, or I give him a short writing assignment that involves going back into the text or making inferences or dictionary work.

When he began with me Michael said he wouldn’t write, that I wouldn’t be able to read it. But I just said, “Well, you can read it to me”, and that was that. His very first writing was done after the tragic death of his dog, Bear. I knew Bear meant a lot to him, and I found an old children’s book, The Tenth Good Thing About Barney (a boy who loses his cat). When I finished I asked him to write 10 things about Bear. Here is what he wrote:

Bear was cute playful was always happy to se me funny loud excited soft cudely beutaful and stubern.

I was moved to tears, it was poetic! The way he listed all those positive attributes, then artfully chose the simple word ‘and’ to set apart the last, most troublesome descriptor of Bear -stubborn!

And what I learned through his simple response is that Michael has a great deal going on inside his head, but that it is difficult to express. When I ask him a question, there is  a space, a waiting, and then, maybe, nothing, or, a one word answer that is actually a profound observation. My first and clearest job was to help unlock the stalled place , to help develop some fluency of expression, some release of his knowledge and observations. This means starting every session with conversation.

Michael is away with his family this weekend, so our weekly session is cancelled. I miss him, I miss the stimulation of our sessions, where I am forced/urged as a teacher to really watch the learner for clues. What does he need next? Maybe I’ll try that game with him! My mind is ever churning with ideas. And, as MIchael continues to develop, new clues will emerge, and his needs will change. No teacher /student relationship should ever be static, but ever changing and responding to the world and others.

One teacher, one learner, facing each other.

Our teacher/student relationship is very much enriched by my collaboration and dialogue with his mother. If I were not able to report many of my experiences with and observations of MIchael with Linda, there would not be so much meat!! Together we ponder the meaning of developments, how we could help each other, and where to go next.

I don’t always know where to go next. Sometimes I try things with Michael, and they go nowhere. He lets me know when he isn’t interested. For instance, when I introduced practical word problems using math operations that we had been practicing (How many can I afford to buy? How much money was made at the sale?) Michael completed them, but was completely uninspired, and I dropped the activity. Many times I get discouraged and feel I don’t really know where I am going with him. And, what seems like progress can disappear the next week. Sometimes his reading seems markedly improved (reading with expression and for meaning), and then he may struggle some the following week.

I try to work with him where he is that day. What keeps me going is the simple fact that I like Michael, I enjoy his humour and interest, and that I  know that the story isn’t over yet.

Location, location, location? Nah. It’s motivation, motivation, motivation.

 I can’t count how many times people have said to me recently, “Your son’s woodcarvings are fantastic. He’s so talented, he should start up a little business.”

My response is always the same. “Yes, Michael’s woodcarvings are fantastic, and he is indeed talented.”  Then, I mumble under my breath (never in a mean way), ‘but you don’t have a clue.’

What these kind and well-meaning people are clueless about is that Michael doesn’t have motivation. Yes, he loves to carve boats and fish and three-dimensional reliefs of animals. He’s even won second and third place for pieces he entered in the Canadian Woodcarving Championships. And, not insignificantly, he feels great when he sells carvings, which he does. Like everyone else, Michael likes money.

So you’d think he’d be motivated to carve and carve and sell and sell. The possibilities are there for him to do so. He could start a little business, perhaps. Create a website to sell online. Try to get carvings into a shop. Go to craft fairs around the province, sell at flea markets and Christmas bazaars.

But it doesn’t happen. It doesn’t matter how talented he may be. Michael doesn’t have motivation. Drive, determination, vision, goal or ambition? I won’t say he doesn’t have any. I’ll just say he doesn’t have enough to motivate him. Ah, yes, motivation.

Michael has Fetal Alcohol Spectrum Disorder (FASD), brain damage caused by the alcohol his birthmother drank while pregnant with him.  Adopted at birth, he was diagnosed when he was six.  Now 25, little has changed (regarding motivation) since he was in public school when his teachers would say some version of  “Michael’s so smart. He just needs to try harder.”  “Michael can do a, b, or c, he just isn’t trying.”  Or, plain and simple, “He’s lazy.”

Not so simple, we’ve learned.

My husband and I have spent the last 20 years, at least, trying to motivate Michael, whether it’s to wash his dishes, shower, do homework, get exercise, and now, develop a steady routine of woodcarving. We’ve used rewards, bribes, consequences, encouragement and undying love. We, like the teachers, believed that he ‘just had to try harder.’ On some level, I think we still think that. We think we’re going to find the magic bullet, treatment, approach, words, reward or encouragement that’s going to make him try harder to do what he needs to do. To motivate him.

One of the symptoms for many people with FASD is low motivation.  Why exactly, I’m not sure, but clearly, it must have to do with brain development. I’ve come to believe over the years, from knowing many other people besides Michael who are considered ‘lazy,’ that perhaps there is no such thing as lazy. Perhaps what we think of lazy is, rather, some underlying problem with brain functioning or confidence, or ability to understand how the world works and navigate within it. Or, maybe these people are just missing the ‘motivation gene.’

It means we have to accept that Michael isn’t ever going to be entrepreneurial. With our help and support, we can encourage him to carve and help him to sell his pieces here and there. But we cannot expect him to start his own little business, set up a website, travel to far away places, place his work in shops.

However, what we can see is that Michael responds positively when people say nice things about his carvings. Encouragement encourages him.  Normally shy and withdrawn, he will actually participate in and even start a conversation about his work when people encourage him to talk about it. When our friends are visiting and they ask about his carvings, he’ll go into his room and bring them out to show. He’s building confidence through his carvings. It clearly makes him feel good about himself. And well it should.

Not surprisingly, it seems that the better he feels about himself, via the carvings, the more we can convince him to carve, sell and keep the positive cycle going.

But guess where all the motivation has to come from. Me. And my husband.  Get his work into stores? Online sales? Go to craft fairs? Sure, if we’re motivated.

As any parent of a child with FASD will tell you, it’s hard to keep the energy up.

I’m not sure where my ongoing motivation to help my son comes from. But I’ll take a guess.

Love. And, probably, my brain chemistry.

The Creative Writing Workshop: From Scars to Healing

We all have scars. Some physical, some emotional. That’s probably why the leader in my creative writing workshop  last month told us, “You have 15 minutes. Write about scars.”

I knew immediately that I would write about the scars my son has on his body from  his compulsive skin-picking habit, one of the symptoms of his Fetal Alcohol Spectrum Disorder; my sadness seeing his scars and inability to help him stop picking; and my hope that people can see beyond the scars to what a lovely person he is inside.

I was in the writing workshop because the volunteer humanitarian-aid organization I’m involved with, Ve’ahavta, (Thou Shalt Love, in Hebrew) was teaching volunteers, like me, to run creative writing workshops for marginalized and homeless people living in shelters around Toronto. Shelters for abused women, shelters for homeless people, shelters for recovering alcoholics.

Ve’ahavta believes that if we volunteers were going to encourage other people to write and share their stories, as was our plan, we should practice doing it ourselves first. Fair enough, because not only would we be encouraging people to write, we would be asking them to read their pieces with other people in the group, and to make comments (positive only) as each person spoke.

My training included hours of writing exercises, then reading my pieces, on topics besides “Scars,” including “Advice I give others but never take myself,” and “Dreams I Still Hold Onto.” We were also asked to write a short biography that included one lie in it. The group then had fun trying to determine what the lie was. We hardly ever got it right.

Ve’ahavta believes everyone has a story to tell and should be given a voice. To encourage this, the organization started a Creative Writing Contest ten years ago. The idea of the contest is to empower the homeless and marginalized through their writing, to recognize that they may have the skills to pursue education or writing, and perhaps find their way off the street.

First prize?  $2000. To encourage entries, Ve'ahavta volunteers went to shelters in the city to talk about the contest, and encourage people to enter a 500 word piece of their choice, on any topic, in whatever, style or format they chose.

The response to the contest has been overwhelming.

Because there has been such interest in the contest from people in the shelters, as well as shelter administrators, Ve’ahavta began running the creative writing workshops, like the one I was being trained for, before the contests. People at the shelters come to the workshop on a volunteer basis only, and get the support and encouragement they might need to take their first foray into writing.

Last year, 2011, the Creative Writing Contest received over 200 entries.

First Prize:  ‘Reflecting Glass’ by Mike Reilly

Second Prize: ‘I Am’ by Henrick Sales

Third Prize: ‘A Dear John Letter to My Drug Addiction’, by Kerri Anne

Matt wrote a piece titled “Reflecting Glass” about the experiences he had when he became mentally ill and hospitalized. Second Prize Winner of the Technology Bundle (Laptop, Digital Camera and 12 Months of Mobile Internet Service) was awarded to Henrick Sales, who wrote a poem,  “I am”. The year’s Third Prize Winner of $1000 was Kerri Anne Moore for her piece “a Dear John Letter to my Addiction”.

Theresa Schraeder, the Grand Prize Winner of the contest in 2005,  has now become a fulltime staff member at Ve’ahavta and was Coordinator of last year’s Special 10th Anniversary Edition of the Creative Writing Contest.

I felt ready to lead the workshop after my training, and was looking forward to my first session at a downtown shelter for homeless men. Roughly 20 people attended the session. After handing out paper and pens, I explained the basics; write anything you want on the topic I give; feel free to read your piece aloud afterward, but if you’re not comfortable, don’t feel pressured. whatever anyone writes or says stays in the room; positive feedback only.

Another important guideline: “We are going to assume everything someone writes is fiction. For instance, when we comment on someone’s writing, we’ll say the ‘narrator’ wrote really honestly about the abuse he received from his father as a child”. The purpose of this rule is to allow people to share difficult experiences they might want to talk about. By assuming what they say is fiction, it could help people feel less exposed  when reading their work to people they may not know well or be open with.

The men seemed keen. The first topic I gave them was “My friends always tell me I should ….”  Some began writing furiously, others stared at the ceiling. Of course, I had to write too, since that's part of the job description of workshop leaders. If we're going to ask other people to share themselves, we should be in there sharing, too.

When the 20 minutes of writing time was over, 15 out of the 20 had written something, and 12 shared their pieces with the group. I read my piece along with them. All were remarkably confessional, honest and nicely written. After someone read, other members of the group either clapped, yelled out “Good job,” or said something brief about what they particularly liked about the piece.

I couldn’t get over how supportive and kind everyone was to one another.

Since we had been together for over an hour, I could tell the men had had enough for the day. I encouraged them to enter the writing contest, whose final entry date is March 12, 2012.  Several people stayed after the session to talk to me. They liked the writing exercises. Some asked if I could leave them more paper. A few asked for suggestions of what they should write about.

“What you know about,” I encouraged. “And don’t worry about using big words or trying to sound a certain way. Write the way you speak. Write the way you did today. You did beautifully.”

I felt heartened when I left. One of the men in the group, from Ethiopia, had done a lot of writing when he was in his homeland. He said something I have always known myself.  “You never know how much is inside you until you start writing. It all starts pouring out then, doesn’t it?”

It surely does.

My Son’s Success With His Devoted Tutor

Every Saturday afternoon, around 3:45, my son drops a bit of change into his pocket, hops on his bike and rides over to our neighbour Sally’s house, only a few blocks away. Sally is the local “bootlegger” on Toronto Island where we live, a 10-minute ferry ride from downtown Toronto.

There are no stores here, so Sally provides an important service to the children living on our island. Part of Michael’s weekly ritual is buying a candy bar and a can of coke from her before hopping back on his bike, now properly stocked, to ride a few more blocks to see another neighbour, Ann.

Ann is the real reason Michael runs out the door each Saturday. She is Michael’s tutor. Michael and Ann, a retired special education teacher, meet at her house every Saturday at 4:00.

Michael can’t wait to see Ann, and in the three years she’s been tutoring him, Michael has not only improved his reading, writing and math. More importantly, he and Ann have become friends. Real friends. Last week, Michael brought his private, treasured rock collection over to Ann’s house to show her. As Michael must have known, Ann went through each piece one by one with him, ooing and aahing over each one, from the pink quartz to Fool’s Gold. Michael doesn’t share his rock collection with just anyone.

Michael, who has Fetal Alcohol Spectrum Disorder, dropped out of school when he was 16, almost completing Grade 9. We tried doing everything we could at the time to keep him in school, but we weren’t successful. Michael just shut down completely and refused to go to school one day, and that was that.

I can’t put blame any one thing to explain why Michael dropped out. He was in a special high school for children with special needs; most teachers were nice to him, and he was friendly with several kids in his classes, unusual for Michael who is normally shy and uncomfortable socially.

But something went wrong when Michael left Grade 8. Classes got bigger. Homework increased. No “homeroom” teacher to pay special attention to him. Greater independence was expected. Put all that together, and you get a kid, my Michael, who just felt lost, confused, isolated and unable to function in what to him, became “the big world.”

Of course I look back to that time now and think of all the other possible things we could have tried to keep him in school, but hindsight, and remorse, I suppose, are useless. And Michael may have experienced some bullying or other physically or emotionally damaging experience he never told us about, and therefore couldn’t address.  But, he dropped out with the words I will never forget, “I’m never going back to school, ma.” I knew he meant it.

For years after he dropped out we tried to get him back in school, or at least to take remedial courses. He refused. He wanted nothing to do with learning. It was particularly unfortunate, because Michael’s skills in reading, writing and maths were never good, and we naturally were worried that the knowledge and skills he did have would be lost over the years. To my great disappointment, he wasn’t a reader, so even buying him books about nature or animals or plants, things he’s interested in, didn’t work either.

The years moved on, and nothing changed. Then one day several years ago, I had a brainstorm. I was speaking to Ann, one of my neighbors, and asked how she’s spending her time since retiring from teaching. I had always liked her, and was always quite moved hearing her talk with such dedication about her students, many of whom had both learning disabilities.

After telling me about this and that, I blurted out, “Ann, would you be interested in tutoring Michael? He’s been talking recently about wanting to get his GED (high school equivalency), but I have absolutely no idea what grade level he’s at in any subject. We’d have to play it all by ear. My hunch is that he’s a long way off.”

Ann had known Michael since he was young and was willing to give the idea some thought. Eventually she came back to me, saying, “Let’s try it.”

Ann found teaching Michael to be a challenge. Besides being at a fairly low level in most subjects, Michael’s mind doesn’t work like most people. Poor executive functioning, poor memory. One week he’ll know something and the next week have absolutely no knowledge of the same bit of information. Sometimes his reading is good, sometimes the words barely come. Sometimes he can remember his multiplication tables, other times not.

We never got much feedback about the sessions with Ann, but we assumed lessons were going well because Michael never does anything he doesn’t want to (like most necessary activities of daily living). “How did it go, Michael?” was always met with a simple, “Good.” But he went each week without a murmur, a clear marker that something was going right.

As Michael has little sense of time and doesn't wear a watch, it was always necessary for my husband and I to keep close track of Michael on Saturdays so that he wouldn’t forget to go to Ann’s for tutoring. Sometimes we would get so caught up in our own lives or be out of the house, and Michael would wind up missing his meeting with Ann because we weren’t there to send him off.

One day, about six months after Michael began going for tutoring, we started noticing that the first thing Michael would ask when we woke him on Saturday mornings was “Is this the day I go to Ann’s?”  We’d say yes, and expect to start reminding him to get ready around 3:00. But we didn’t have to. Before we would say a word, Michael got himself ready to go and was out the door by 3:45, whizzing away on his bike, the change rattling in his pocket.

Over time, Ann began to share with me how special their sessions had become. She would light up when talking about Michael, thereby making me light up listening to her. Listening to Ann was a mother’s dream.

She talked about getting Michael to do a bit of writing. Though his thoughts and words were simple, often in list form, Ann found them revealing and poetic. Sharing that with him made him want to do more. They began reading books aloud together, talking about passages as they read. While helping Michael with his comprehension, it was an opportunity to bring Michael out of himself and to share thoughts and feelings. Ann shared hers as well. She cut out newspaper articles she thought he’d be interested in, providing more material for conversation and thought.  She invented games to play with him, always ending their sessions with a bit of fun.

I have no idea what grade level Michael may be in his reading, writing or math. He doesn’t mention getting his GED anymore. He still doesn’t tell me much about his sessions (so I’m fortunate that Ann does).

All I know is this: Michael runs out the door each Saturday now, usually without a reminder, arriving at Ann’s house early. And everytime I see Ann, she has a wonderful story to tell me about her session with Michael. The icing on the cake is that while telling me the story, besides grinning from ear to ear, Ann oozes, what appears to me to be strong feelings of fondness for my son. They have even made plans to go together to see the film version of the book they’ve been reading the last six months.

I can only conclude that Ann’s enjoying the sessions as much as he is.

If this isn’t a success story, I don’t know what is.

The Difficulties Finding a Good Support Worker or Coach

I started writing this blog in a rage. When I finished my detailed four-page (word document format) rant, I read it through and realized that’s exactly what I had done. Rant. And rants don’t necessarily make good blogs.

While it felt good for me to give a blow-by-blow explanation of why my husband and I decided we have to fire our son’s support worker today, I realized that’s about all it did: help me get something disturbing and sad out of my system and down on paper.

But, as I said, that’s all it did. Though I think dozens of people raising children with special needs would relate to my unhappy situation (if they made it through my dense writing), it wasn’t going to work for a blog. Experience tells me that more often than not, most readers’ eyes begin to glaze over when reading (or listening to!) other people’s angry missives.

So, I’m rewriting this blog entry right now and will try to stick to the salient facts. Wish me good luck.

It has always been difficult to find good support workers (or coaches) for our son with Fetal Alcohol Syndrome. When he was diagnosed with FAS at the age of six, in 1993, few professionals had heard of FAS. Many who did know about it misunderstood the condition completely (“people with FAS have no conscience”; “they’re violent”; “they can’t learn,” etc.).

So when Michael was young, we couldn’t find a support worker who had a good understanding of children with FAS or how to work with them. While we did find caring, sensitive workers, they had no specific training working with people with FAS so they often relied on therapeutic models that didn’t work, such as “Just try harder, Michael.”  Or, “You know you weren’t suppose to do that. So why did you?” Or, “You knew that 2+2= 4 last week. Why do you not know it this week?”  That kind of thing.

People who understand FAS know that many people, including our son with this neurological disorder, have poor executive functioning, bad memories and don’t necessarily understand the consequences of their action. They need external brains.

Back to the support worker. Last year, we hired Bob to work with Michael, now 24. Michael still needs help following routines of daily living and needs to improve skills which will allow him to live what is called “semi-independent living.”  Michael lives in a group home during the week and is home with us on Friday through Sundays. Michael also needs someone he can talk to.  The staff at the group home, while nice, provide minimal support.

Bob came recommended because he had worked with people with FASD before, and when we interviewed him, we were impressed with his knowledge of the disorder.

Once hired, Bob spent several hours twice a week with Michael helping him with daily routines. He took him out grocery shopping, to the library. He helped him on the public transit system and did other things to  get him out into the world. And they talked.

We thought everything was working well with Bob and Michael was content with seeing him several times a week.  Until…

Michael broke a serious rule at his group home a month ago (I don’t feel it fair to Michael to write what it was, but suffice it to say, Michael didn’t harm or affect anyone else).

Needless to say the group home workers as well as my husband and I were deeply upset about what Michael did. We met and tried to come up with appropriate consequences and reinforcements to ensure Michael understood the “wrongness” of his act and wouldn’t repeat it again.

But it’s not easy to teach someone not to do something again, even when they understand it’s wrong, when they act more on impulse rather than reason.

This is where the problem with Bob comes in. Bob decided the best way to reach/teach Michael about this issue was to berate, bully, and verbally bludgeon Michael about his misdeed. He was relentless and wouldn’t give up. He believed he had to “break Michael’s defenses down,” in order for Michael to understand the seriousness of his misconduct. He repeatedly had Michael in tears.

We didn’t know about this until Michael eventually came to us, crying, and explained what was going on. “I don’t think anyone should treat me like that.”  “He asks me questions about what I did that I can’t answer.”  “When someone is that mean to me, I dig in my heels and it makes me want to do the opposite.”  “I don’t want to work with him anymore.”  “He makes me feel bad about myself.”

You would think that would be enough for my husband and I. You’d think we would call Bob and tell him we didn’t think this approach was constructive for Michael or a way to help him learn to control his impulses better.  But we didn’t trust our instincts. Bob was a professional. He came highly recommended. Perhaps he knew something we didn’t. Perhaps we were being unnecessarily protective and defensive of our son.

So, instead, we set up a meeting with Bob for all of us to meet and decide how and if to move forward.

I’ll spare you the details of the meeting, but Bob was belittling to my husband and me (you’re too easy on Michael; you’re pretending there isn’t a problem; you’re letting Michael get away with things).  He bullied Michael when Michael tried to talk (“Speak louder.”  “You can’t just tell me you’re not going to do that again. You have to tell me how you’re going to stop yourself from doing it…”

Bingo. Time to trust my instincts. Too bad I hadn’t earlier.

This guy is a bully. Michael’s not going to learn anything from this guy. He’s going to do the opposite of what Bob says. Plus, our goal is to build Michael up, give him confidence, help him reprogram his brain in a constructive way.

As Michael said, no one should treat Michael like this.

So we’re firing Bob. One problem solved. But there’s always another.

How are we going to find someone (good) to take his place. My husband and I can do only so much. Michael’s not the only one who needs support.

Whew! I did it. The blog is now only two dense pages. Congratulations to any of my blog readers who made it through from beginning to end.

I would love to hear about any of your own experiences  (good or bad) with workers, and what you do to ensure you’ve found the right one.

Or, you might want to share experiences about a time when you did or did not trust your own instincts.

Happy New Year to you all.

Letting Go: it ain't easy

“We’ll meet you at the Wellesley subway stop at 10:45, ok?”

My husband is talking on the phone to our son Michael at the group home where he’s living. “You remember how to get to the Wellesley station from there, right?  So we’ll see you there at 10:45, a quarter to 11. Do you want to write that down so you don’t forget?”

“No, that’s okay, I’ll remember,” Michael says to my husband. They then hang up.

I’m standing in the background, listening to the conversation. I want to jump in before my husband ends the call. I want to say, “Tell Michael you’ll wait while he gets a piece of paper to write it all down. Or, at least, have him repeat the time back to you and describe how he’s going to get to the Wellesley station.” 

But I don’t say anything. I keep my mouth shut and get dressed. I can’t always be jumping in, trying to micromanage everything and everyone interacting with my son. At some point, I have to let go, at least a little. Michael likes feeling independent. I have to give him a chance.

We’re meeting up with Michael to go to an art gallery together. My husband Robin and Michael take a woodcarving class each week, and their teacher is exhibiting his sculptures at a downtown gallery near the Wellesley station. Michael, like us, was really looking forward to seeing the exhibit. I so very much want everything to go smoothly.

If all goes well, we’ll be meeting Michael in two hours. I can’t relax, though. I know there’s a very good chance that all will not, in fact, go well.  It’s happened too many times before.

Michael, now 24, has Fetal Alcohol Spectrum Disorder (FASD). One of the symptoms he has, common in people with the disorder, is a poor memory. What he may know one day may not be retrievable to him the next.

Sure, he once knew how to get to the Wellesley station from the group home where he’ll be coming from.  But will he really remember how to get there today? Maybe or maybe not. Will he remember what time he’s suppose to meet us?  Maybe, maybe not.

To complicate the impending rendevous, Michael often believes he knows something when he really doesn’t. He often says he knows something when he really doesn’t. He often pretends he knows something when he really doesn’t. And, as I mentioned before, he often knows something one day, then not know it the next.

Therefore, both my husband and I know the chances Michael will show up at the right time and place are 50/50, if that.  

Robin and I arrive outside the subway station a little early just in case Michael shows up ahead of time and gets worried if he doesn’t see us. I can see from the look on Robin’s face that he’s as anxious as I am. We stand together for awhile, then he moves away, leaning up against the building. He pulls out a crossward puzzle he’s been working on.  I move into the sun and pull The Globe and Mail out of my bag and begin reading. I look over at Robin, now pacing and biting his lower lip.

Everytime a rush of people come out of the subway station, I peak up from the paper to see if Michael is one of them. He’s not. Something churns in my stomach.

Fifteen minutes have passed. It’s now 11:00. Then 11:05. Michael’s now 20 minutes late.

“I’ll call the group home to make sure he’s left,” Robin says. After a brief call, he tells me, “They say he left around 10:30, so he’ll probably be here soon.” I’m not totally sure whether Robin believes it, but we both take our positions again. Neither of us wants to admit defeat.  So we wait.

I’m starting to think we may have to consider giving up, but I don’t say a word. Neither of us wants to be the one to say, “I guess we better go on without him.” 

I took comfort in knowing that though we would be terribly disappointed if Michael didn’t show, we at least wouldn’t have to worry about him. Even if he got lost finding the subway station or messed up with the timing, he would know how to get to our house. We’d practiced that with him on the subway line for what seemed a million times and a million different points on the system.

I kept looking at my watch. It’s now 11:15. He’s half an hour late.  11:20, 11:25.  11:30. Now forty-five minutes late.

“What do you think?”  I say. “Should we just go?”  I really don’t want to, but it was probably time.

“I guess we can safely assume he’s not coming,” Robin responds.

And wouldn’t you just know it. Right then, Michael walks cheerfully out of the subway station in his black hoodie and jeans with a big grin on his face, looking as proud and cheerful as could be.

“Hi, Mike,” I say, putting my arm around him. “We were just about to leave. We were afraid you got lost or something. You’re forty-five minutes late.”

“Really? he said. “What time was I suppose to be here?”

“10:45” I say.

“Oh, I thought you said 11:45.”

“Nope, 10:45. Did you have any trouble finding the station?”

“Naw, I know the subway system really well.”

“We’re just glad you made it,” I said. We really were.

Wounded in the Womb

Wounded in the Womb

I’d like to alert my readers to an excellent series of articles published this week in the Winnipeg (Manitoba) Free Press about Fetal Alcohol Spectrum Disorder (FASD). Wounded in the Womb, is available for reading online at http://www.winnipegfreepress.com/special/fasd/   

A wide variety of articles, research findings, photos, diagrams,  interviews and even videos about FASD can be found under the following topics in the series:

    * What is FASD?

    * Crime and FASD

    * Child and family services

    * FASD in the schools

    * Diagnosing FASD

    * Prevention and solutions

    * The Voices of FASD

I commend the Free Press editorial staff for developing this special series. Fetal Alcohol Spectrum Disorder (FASD) is considered a significant problem in Manitoba by many FASD advocates in the province, though they’re concerned the real number of people with the syndrome, as elsewhere in the country, is underdiagnosed, and therefore, underserved.

According to an article published in the Free Press last February, FASD experts say the commonly used estimate of a 1% prevalence rate of FASD in the province is seriously lowballing the number. They believe the danger of this guesstimate is that it’s and used to justify the paltry sum of money allocated by the government to FASD prevention and treatment.

Brenda Bennett, director of FASD Life's Journey said, "We're all just guessing."  Bennett, an advocate for adults with FASD in Canada says, "When I know the majority of people with FASD in Manitoba go unidentified and unserved, it's really heartbreaking.

“If each child were screened for FASD at birth or in elementary school, she continues, "they wouldn't be a mystery to every teacher, every foster parent, every social worker, every guidance counsellor, every judge and legal aid lawyer..."

Unfortunately, there’s no easy test like a blood test or brain scan to diagnose FASD, and according to the government, no mass scale screening for it was on the near horizon in the province. They’ll address the problems associated with FASD through education and programming, they say.

Huh? Ok, sure, you can educate the public about the dangers of drinking alcohol during pregnancy without having a body count. But come on. Without knowing who has FASD, who exactly is their so-called “programming” going to be for?  You need a target to target programs, don’t you?

Albert Chudley, a Winnipeg pediatrician, professor and FASD expert sees this as a problem, too. "For 18 years, we've been dragging our feet, collectively," said Chudley. "To say, 'We don't want to count, we just want to prevent' -- the two are very closely related.”

Young people in the province with FASD may be a long way off from getting young the treatment and programs they need. Besides difficulties in diagnosis, Chudley identifies another impediment. “FASD is also seen as an aboriginal disease so it goes under-reported among non-aboriginals.

According to the February Free Press article, “Experts such as Chudley say it's likely doctors treating the troubled children of white, middle-class parents zero in on similar cognitive problems such as attention deficit hyperactivity disorder and never think about prenatal alcohol exposure.”

Wounded in the Womb has timely, important information about FASD. Check it out. Maybe we can all get our local newspapers to do something similar?

Apple Fritters (and my son)

My son with Fetal Alcohol Spectrum Disorder, now 24, lives in a group home during the week and is home with us on the weekends. We love seeing him and he loves being here, though he spends most of the time quietly in his room, often carving wood.

He’s a very sweet, quiet young man, but completely without the gift of conversation. Though we don’t get much back in words, my husband and I always chat with him about things going on, ask him questions, and like to hang out with him if he’s willing.

While I know he’s a loner and not usually comfortable with people, I see him light up when he actually does make some sort of “connection” with people. I, therefore, as his mum, try to bring him out of his isolation. I think part of the reason he likes coming home is because we make him “connect,” and he therefore feels connected. Who, in this great big world of ours doesn’t need that?

Nevertheless, the strength of our connection is not based on words. When he was little, we could lavish physical affection on him, and it helped us build a strong bond – us with him and him with us. Unfortunately, the physical affection route to building our relationship with him is long gone. It’s hard to get even a hug out of him these days. I guess it’s age appropriate, and that’s a good thing. But I miss the physical connection with my son. It was reciprocal.

I know that all the attempts in the world at conversation isn’t going to maintain our connection. Fortunately, like other mothers, I know that another good way to my son’s heart is through his stomach.

Since it’s fall, I decided to take advantage of all those beautiful, juicy fresh Empire and Cortland apples I bought at the St. Lawrence Market on Saturday morning. I whipped out the recipe for Apple Fritters I had been drooling over in my latest edition of Canadian Living magazine, and got cracking. I convinced myself, without much difficulty, that deep fried and battered apple slices would be good for the family.

I was right. They were heavenly. As my husband said, “Tastes like we’re at the State Fair.” When he said, “They’re great,” I could only reply, “Of course they’re great. They’re sweet and fried. Always a winning combination.”

My son was grinning from ear to ear with each bite of the fritters. Seeing him like that was almost worth the extra inches on my waist. Forget the almost. It was worth it. As I walked him to the front door on his way back to the group home, he looked at me and said, “The fritters were great, mum. You’ve got to make them again.” Boy, will I.

Besides my joy, let me share with you the winning Apple Fritters recipe from Canadian Living: 

Apple Fritters

1 ½ cups all purpose flour

2 tbsp granulated sugar

1 tsp baking powder

½ tsp cinnamon

1/ tsp salt

1 cup soda water

2 tbsp unsalted butter, melted

2 eggs, separated

3 apples

Oil for deep-frying

Icing sugar

In large bowl, whisk together l ¼ cups of the flour, granulated sugar, baking powder, cinnamon and salt; whisk in soda water. Whisk in butter and egg yolks; cover and let stand for 2 hours.

In separate bowl, beat egg whites until stiff not not dry. Fold into batter. Place bowl in larger bowl of ice water; let stand until cold, about 15 minutes.

Peel and core apples. Cut into ½ half inch cubes. Toss with remaining flour. Fold into batter.

Meanwhile, in deep fryer, work or wide saucepan, heat about 2 inches oil unter deep-fry thermomenter reads 350 degrees F. Using ¼ cup measure, pur in batter, 4 at a time.

Fry, turning once, until golden, 3 – 4 minutes. With slotted spoon, transfer to paper towels to drain. Sprinkle with icing sugar and serve warm.

Enjoy.

Lsr/10/11