Books Galore ... And Their Reviews
This page holds my reviews of various disability-related books.
This page holds my reviews of various disability-related books.
The Memory Keeper's Daughter
Kim Edwards
The book starts in 1964 and spans 25 years, until 1989.
Phoebe was born in 1964, a twin to her brother Paul. But Phoebe was different - at her birth, her father, a doctor, immediately recognized the tell-tale signs of Down Syndrome, or mongloidism, as it was then called. Having grown up with a sibling with a chronic health condition, who had died at age 12, and thinking he couldn't possibly "put" his wife "through that", he made a decision which affected not only Phoebe's life, but also that of her twin, her mother and himself.
And so the book tells the story of a mother who never recovered from thinking her child died at birth, a father who never recovered from the decision he made, a marriage that never recovered from the deception and a twin brother who grew up knowing something was very wrong in his family. But it also tells the story of another family, one that, although not created by birth or biology, was everything a family was meant to be - strong and loving and supportive.
There's no "happy ending" in the traditional sense of the word but perhaps the author offers us something a little better, a little more believable ... a realistic ending. It's a good book, well worth the read.
A few weeks a go, I watched the movie, which I stumbled across in a clearance box of videos at the Superstore. The good news is that the movie mirrors the book very well, so you don't end up feeling betrayed by a movie that does little more than steal the book's title (note to movie makers - no, it is not okay to completley change the ending of a book). The bad news is that the movie skips large significant chunks of the book (no doubt due to the time element), which can leave you feeling a bit cheated. And which is why I would suggest that you might want to watch the movie first - that way you will get a good story, which is only made better by the longer, more complex narrative found in the book.
Parenting Plus - Raising Children with Special Health Needs
Peggy Finston, MD
I've often said that the best books I've read around disability issues are those written by a parent (or other family member) of a person with a disability who is also a professional in their field. This book, not surprisingly, is no exception.
I first read this book many, many years ago while spending a few nights at Ronald MacDonald House and why I can't quite recall the why of that visit (which is actually a good thing), it would have meant that my oldest (who was then quite little) was either an in-patient at the IWK for one of her then usual two-week episodes or had some manner of multiple tests happening over a series of days. Although admittedly, I don't recall much around that stay, I do vividly remember my experience reading the book.
I remember reading it late in the evening (which makes me think my daughter was with me and it was after she went to bed). I remember laughing. I remember crying. I remember laughing and crying at the same time. Rinse. Repeat. Yeah, it was one of those kind of books.
Although, unfortunately, it's now out of print (I would much rather it were in print today than many of the disability books that are), it's well worth the read if you can get your hands on it. And one place I know you can get your hands on it (although not at the moment - right now it's in my hands) is the lending library at the IWK.
Sexuality - Your Sons and Daughters with Intellectual Disabilities
Karin Melberg Schwier Dave Hingsburger
This book was lent to me by one of my daughter's resource teachers back in September (and yes, I haven't returned it yet but no, it hasn't taken me this long to actually finish the book). I am somewhat hesitant in reading books about sexuality and persons with intellectual disabilities because my experience (or, at least, my perception) has been that they tend to lack a very important personal touchstone for me - an element of morality.
My apologies but I don't quite subscribe to the school that since individuals with intellectual disabilities are persons first (no arguments there), we should just step back and allow them to be as sexual as they wish with whomever they "choose", after providing them with appropriate protection, of course. I'm sorry but if I would (and should) be locked up if I took that approach with a typical 8-year-old child, how can it possibly be okay with my young adult child who has the same mental abilities as that 8-year-old?
I realize that we may have to agree to disagree here (I seem to have to do just that with many at this point) but, one last thought - is my young adult child actually "choosing" her actions in the way we understand that term in this context? And does she have the mental ability to deal with all the consequences of those "choices" - and no, I am not talking just about pregnancy.
All that and we still haven't got to the actual morality issues involved. No, I am not a total prude, although I may prefer that my children wait until marriage to become sexually active, I know that it is so far from a realistic possibility as to be almost ludicrous. I do, however, expect them to be in a committed relationship at the time (meaning "committed" more from an objective, than a subjective, sense, which is a whole different story).
But enough of my own ramblings - you're here to learn more about this book. Although, perhaps my own thoughts on these issues can serve as a good backdrop because if I can heartily recommend this book
The authors are Canadian (yay!) and have worked extensively in the disability field - I'm pretty sure just about everyone has at least heard of Dave Hinsgsburger, by now (by the way, did you know he also has a blog)?
Much like "Everything You've Never Wanted Your Kids to Know About Sex ..." (below), the book starts in the very beginning, reminding us in detail that sexuality isn't really what generally first comes to mind when we hear the word, that it's actually begins with teaching our children self-love and self-acceptance and building a healthy sense of self-esteem (something which is often that much more challenging to do when it comes to our challenged children).
For me, the names of the chapters really say it all: Your Journey, Your Guides, A Place to Start, Hold Me Tight, Put Me Down, Leave Me Alone and Let Me Go, ending with A New Future for You and Your Child - sounds a lot like "parenting" in general, like the journey we undertake with our typical children, doesn't it? That makes sense to me, not because our journey with our challenged children is just more of the same - it's often 1,000 times tougher - but because those same general principles still apply (no matter how mutilated they may seem to get at times).
The book is peppered throughout with excerpts and stories from a variety of families and actual real-life situations (this is so not the book for the academics, it is clearly written by and for families), but even more than the families, we hear from the young people themselves. Not just about things sexual (in fact, that's only a very small portion of it) but about their lives, their thoughts and dreams, who they really are.
It's been quite a few months since I've finished the book, which is unfortunate because it makes it hard for me to share specific thoughts and examples with you. I can tell you that I used close to a dozen bookmarks by the time I finished the book, one (obviously) to mark my place and the others to mark the many pages and excerpts I knew I needed to go back, read again and take more time to think about and process.
Some of those pages I marked for myself: risk reduction and assertiveness; your own emotional response when teaching your child about sex and, more importantly, your emotional response to their reactions;;talking to your child about disability, and what it takes to nurture friendships and connections for our children (because true safety comes from being part of a caring community).
Speaking of which, the lengthy sections on avoiding exploitation are terrific - as just a couple of examples, how "being in healthy relationships make people with disabilities less likely to be manipulated into abusive situations" and the importance (and challenges involved) in teaching our children to say "no" when for so much of their lives we're trying to teach them (make them?) do just the opposite - to listen to us (and other adults) and do as their told.
Do we essentially, unwittingly, teach them to passively accept what comes at them? Abusers are well aware of this and that is often the source of their power. But the authors don't just point out such things, they provide real-life strategies (and role plays) you can use with your child to teach them otherwise.
Personally, I learned a lot; for example, I was shocked to read of the financial and legal effects (at least in the US) of marriage for persons with disabilities when it comes to continued government financial support and of the various hurdles to marriage for persons with disabilities in the different Canadian provinces.
And, last but certainly not least, the book is chock-full of references to numerous resources; check this out, the headings in the"Recommended Resources" sections at the back of the book look something like this - there are general interest books, magazines and videos; specific resources on social skills/sexuality (I really need to photocopy that section for myself), resources for siblings, organizations for parent support and sources of sexuality materials and information and a section on internet resources. When my oldest daughter was in middle school, I worked with the guidance counsellor to find some materials on sexuality that were suited and useful for persons with disabilities, without much luck, I'm sad to say. I guess I have no excuse now. Which means, I suppose, that neither do you.
* Added April 12, 2011
Everything you NEVER wanted your kids to know about SEX (but were afraid they would ask): The Secrets to Surviving Your Child's Sexual Development from Birth to the Teens
Parenting (or, perhaps more accurately, attempting to parent) two teenage daughters at the moment, issues of sexuality and social interaction are foremost in my mind. Add in the girls' disabilities and it all becomes so much more fun. Which is why I have been on the lookout for books on this topic lately (and why you will, no doubt, see more than a few of them reviewed in this space over the next little while)
Admittedly, this book is not written at all for children with special needs - in fact, with the exception of one very small paragraph partway through the book (which I felt was rather poorly handled), our kids aren't even mentioned. Yet, despite that, I found it one of the better resources on sexuality for parents that I have found.
I could tell you that it was jointly written by a professor of pediatrics and a psychiatry professor. I could tell you that somehow they manage to incorporate a lot of anecdotal stories and comments from parents with the physical and psychological facts of human development (and the research studies to back it up), while sprinkling it throughout with liberal doses of humour. And manage to make it work. Yes, I could tell you that and it would all be true but it still wouldn't do the book justice.
The book starts in the beginning, the very beginning (which is where most good useful books on this subject start I have come to find) - from the time our toddlers are fist able to notice and learn from our attitudes and approach to sexuality. From things like attitudes towards nudity within the house, to learning the proper names for all of our 2000 body parts, to toddler sex play and the developing expectation of privacy as a child grows older, they show how the issue of sexuality "grows up" and develops just as our children do.
They really do cover pretty much every issue that (at least a typical) parent could face in guiding their children "from high chair to high school" and toward making the right choices for themselves, including savvy advice on everything from what to do if your child walks in on you, masturbation, adolescent rebellion, how to talk about homosexuality, what if you don't like your child's boyfriend/girlfriend and ways to help your son or daughter tell their boyfriend or girlfriend "no" if they're not ready.
Equally helpful are the suggestions on handling that "Big Talk" with your child, whatever their ability level - and it's fascinating (and downright scary) to see just how many teenagers would say their parents have never talked to them about sex as compared to parents who would insist that, of course they have and what a wonderful talk it was.
The appendices also might be a good resource for some parents - the first covers the various methods of birth control & their pros and cons and the second focuses on the different STDs and how to spot them and deal with them.
And yet, as the parent of a challenged child, our biggest and deepest fear often relate to their potential sexual vulnerability. And while I am reading another book that deals much more directly with that issue when it comes to individuals with intellectual disabilities (which you will read more about later), I hear both books echoing the other when it comes to the point that perhaps the best way to protect our children from such concerns can't and doesn't come from locking them up in their rooms or homes until some magical time (and when, exactly, would that be?) but from teaching them from a very young age about their bodies (including the proper names for all their body parts) along with a proper respect for themselves and their bodies and a strong core of self-confidence and assertiveness.
One last comment on this book - I may, personally, be off-side from some in the disability community around this issue in that I believe the same morals and values we would expect of our typical children as they become young adults should be expected of our challenged children and I struggle with the concept of how it can possibly be "okay" for my child with a chronological age far beyond her mental age to engage in behaviour that would result in Children's Aid rightfully banging on my door were I to allow her to engage in that behaviour when she was chronologically what her current mental age is (did that make any sense??). That being said I found that while I certainly didn't agree with everything this book had to say, the majority of the time I found the authors to be speaking to me in a way that made a lot of sense to me.
* Added January 20, 2011
Disability and Human Rights in the Workplace
A CLV Special Report
Adelyn L. Bowland (2004)
This small, almost pocket-sized (at least from the standard of legal text books) paperback book should pack a fair bit of punch for the lay reader interested in the issues surrounding disability and human rights in the workplace.
The first half of the book covers such topics as "reasonable accommodation" and "undue hardship" (absolute buzzwords when it comes to the legal analysis of the treatment of disability in the workplace); the legal definition of the term "disability"; duties of the employer, the employee and the union (both in hiring and on the job); medical issues (such as pre-employment medical exams and testing and the disclosure of diagnosis and treatment); the meaning of "suitable alternative employment"; the effect of employee absence from work due to disability; what constitutes "reasonable accommodations" when it comes to the issue of substance abuse and in what circumstances the discharge of an employee will be considered a legally acceptable option.
The second half of the book includes a list of the various human rights statutes across the country (each Province and the Federal government having enacted its own human rights legislation); an abridged collection of various Human Rights Commission policies, including both Alberta's and Ontario's 2002 policies on the duty to accommodate; and a list of Human Rights Commission publications by jurisdiction (unfortunately, none from Nova Scotia) related to disability.
One likely very appealing aspect of this book for non-lawyers will be that the text for each each chapter is quite short (perhaps no more than 4- 6 pages), with the the cites for any relevant case law (both court and Commission) listed as end notes at the end of the chapter. This means that the author must be both efficient and succinct in covering each point - no rambling on and on, examining the evolution of the case law, as many legal text books are wont to do (hence, their usual large size and heavy weight).
The only real "down side" I can find to this book is that although it definitely has a cross-Canada focus, the examples given and Human Rights Commission decisions referred to tend to be from New Brunswick, Saskatchewan, Ontario, Alberta and the Federal Commission - you will look long and hard to find a Nova Scotia reference.
That being said, certainly the majority of what's contained in the book should apply here and it should more than serve the purpose for which I am recommending it - to give the lay person a more basic understanding (and build on our previous discussion) of what the rights of a person with a disability are in the workplace (for before and after being hired).
Being a legal text, the book is available at the Nova Scotia Barristers' Library in Halifax (as set out below),as well as the NSSC AVC (Lawrencetown) and the NSCC Waterfront Campus.
Advising The Older Client
Ann Soden (2005) *
I first discovered (and recommended) this book when writing the post Practical Applications - The Standard of Competency Required for a Power of Attorney. Although written by a lawyer, for lawyers, this lay-person-friendly book covers such topics as the ethical issues involved in representing a client with diminished capacity, estate planning, guardianship, powers of attorney, health care directives and capacity, consent and health care decision-making, among others.
I would highly recommend it for those who want to learn more and develop their understanding on any of the above issues. Although written in the context of advising seniors, I found it quite useful around many issues relevant to the disability community. And although not written specifically for Nova Scotians, it does cover the situation across the provinces.
Getting your hands on this book might be a tad more dicey.
I found it at the Nova Scotia Barristers' Library located in the Law Courts in downtown Halifax - lawyers are able to take books out on a two-week loan basis but I'm unsure about the borrowing policy for the public. I do know, however, that the public is more than welcome to come to the Library, look around and look at books on the premises. The Library staff are extremely pleasant, helpful and professional and will happily guide you to where you need to to go.
It would appear that you can also borrow it from the Dalhousie Law Library, the NSCC Cumberland Campus and the NSCC Waterfront Campus.
Although it is available for purchase at amazon.ca, you might want to reconsider that idea as it is quite pricey. Your best bet is, no doubt, to check it out at one of the libraries.>
* Added Decenber 22, 2010
I have found that the best books are invariably written by an author who combines both personal and professional experience (the parent of a child with special needs who is also a psychologist, for example) and this one is no different. Only a person who has really lived it, lived through all those emotions and experiences and came out the other side can really "get" it. And, by extension, share it in a meaningful way with others.
Kate Strohm, is a counselor, health educator and journalist. Her older sister, Helen, has cerebral palsy and epilepsy, among other issues. Although Kate did well in her childhood (or thought she did), in her teen years it all started to come apart, as she suddenly found herself experiencing insomnia, panic attacks, self doubt and self anger. Despite this, she manged to graduate university, work in various hospitals, travel and be appointed a health educator at a community centre (her dream job). But the panic attacks continued.
It wasn’t until her 40s that she found a therapist and was able to work through her feelings towards herself and her sister. She eventually came to realize that from an early age she had unconsciously feared that if she showed any signs of lack of control (such as hands shaking or voice trembling) people might think that she was like her sister, that there was something “wrong” with her, too.
She had learned to be the perfect child and never make waves in the family, even taking on a parental role, in order to protect and look after her own parents. And yet, at the same time, she felt guilty about the things she could so and her sister could not. She resented her sister and wanted more of her parents’ attention. But when she got that attention, she again felt guilty. These realizations were only the start of a long process in which the author was able to untangle her feelings about herself, her sister and her parents.
Strohm intermingles her story (and insights) with those of many other siblings, encompassing families representing a wide range of disabilities. In the first half of the book, chapters such as “Getting a Fair Chance”, “Feelings with Nowhere to Go”, “Ongoing Grief” and “Responsibility and Caregiving” cover a range of issues that effect both siblings and parents when a child in a family has a disability. The remaining chapters focus on ways in which adult siblings can gain understanding, learn to express feeling and gain support; strategies for parents to build stronger families and support younger siblings; and the necessary awareness and strategies that service providers and practitioners can use to help families.
I must admit that I picked this book up hoping I might find some information to help my youngest daughter deal with her older sister's challenges and the way they have affected our family. But not only did it give me insight into how my youngest is feeling (and helped explained some of her behaviour - including the time, at age 6, that she broke down in tears when her father and I instinctively turned our attention to her sister, who had began to go into a seizure, screaming that her sister always got all the attention), it also ended up striking a deeper personal chord with me.
I, too, had a sibling with a disability; two siblings with disabilities, to be exact. But I never really knew either one, both being very severely challenged and having been placed in an institution many miles away before I was born. Because I can only remember seeing them two or three times in my life and have no real relationship with them, I would have scoffed at the idea that my childhood and life (and who I am today) has been affected in any meaningful way by my sisters. Or at least that was the case until I came upon a chapter near the end of this book which struck me hard in the gut. And I clearly saw how our whole family, including myself, had been affected by my sisters' disabilities, even though they had lived at home for only a few short years before I was born.
I would definitely recommend this book for the parents of both typical and challenged children and for any adult who has grown up with a sibling with a disability. As a parent, it will point out the potential pitfalls it is much too easy for a family to fall into, help you more fully understand the concerns of your typical children and show you ways in which you can support them on their journey.
As a sibling, you will find that you are not alone with your feelings and discover how growing up with a brother or sister with special needs has shaped your life and who you are today. In which case, whatever your current relationship might be with your sibling, I am quite confident that you (and, by extension, your relationship with them) will gain from the experience.
** Also available at of the the offices of the Halifax Association for Community Living
