Claire Bien, Associate Director of Communications at The Connection, Inc. and trained facilitator at the Hearing Voices Network, shares her thoughts and a few fun snapshots from the launch party for her new book, Hearing Voices, Living Fully: Living with the Voices in My Head.
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Win a signed first edition of No Matter What!
To celebrate our new reprint of this inspiring adoption memoir, we’re giving away three original copies signed by author and adoptive mum Sally Donovan. To enter, simply sign up to our mailing list here, and you’ll be entered into our random prize draw.
An uplifting true story of an ordinary couple who build an extraordinary family, the book describes how Sally and Rob Donovan embark upon a journey to adopt following a diagnosis of infertility.
Sally Donovan brings to life with characteristic wit and honesty the difficulties of living with infertility, the decision to adopt and the bewildering process involved. Finally matched with young siblings Jaymey and Harlee, Sally and Rob’s joy turns to shock as they discover disturbing details of their children’s past and realise that they must do everything it takes to heal their children.
By turns tragic, inspiring and hilarious, Sally and Rob’s story offers a rare insight into the world of adoptive parents and just what it takes to bring love to the lives of traumatised children.
With over fifty 5* reviews, find out why everyone’s talking about this unique glimpse into the realities of adoption. Just sign up to our mailing list here with your contact details, and we’ll be in touch if you are one of the lucky winners.
Closing date Monday 16th June 2014.
In this extract from the inspirational adoption memoir, No Matter What, author Sally Donovan shares the reality of parenting children who have experienced abuse and neglect. Here we see just one example of how the consequences of trauma can manifest themselves unpredictably in apparently straightforward everyday situations, such as tucking your son up for bed.
Learn more about Sally and her family’s struggle to overcome the challenges of early trauma; read reviews, and order your copy of the book here.
What is “the Talk” and why is it important for interracial families?
The authors of The Interracial Adoption Option explain, sharing their personal experiences as white adoptive parents of two African-American children.
Even casual news watchers in the U.S. over the last several months are aware that one of the most talked about news items is “The Talk.” No, it’s not a new movie or book. And it’s not to be confused with “The Conversation Project,” which is an organized effort to get Americans to start talking about how they want to die. “The Talk” is the talk that every black parent knows they have to have with their child. It’s that difficult conversation about what it means to be black in the U.S. As one black television commentator said this morning—“I’m more afraid of that conversation than the one about the birds and the bees.”
The current talk about “The Talk” was fueled by Manhattan Federal Judge Shira Scheindlin’s decision earlier this week that New York City’s “stop and frisk” policy, which allows police to stop, question, and frisk anyone who looks suspicious, is unconstitutional because it targets young black and Latino men. Under the “stop and frisk” policy, 85 percent of the suspects stopped by the NYC police were not white. Saying each stop “is a demeaning and humiliating experience” for the men who are targeted, Judge Scheindlin ruled that the NYC stop and frisk policy is a form of racial profiling and is therefore unconstitutional. The recent acquittal of George Zimmerman, a Florida neighborhood watch coordinator charged with the murder of Trayvon Martin also sparked discussion of “The Talk.” Martin was an unarmed black male teenager that Zimmerman followed one evening because, as he told police, he didn’t know the boy and he looked suspicious.
Many people in the U.S. hailed the election and re-election of Barack Obama as the first black President as proof that the U.S. had become a post-racial society, a place where race no longer mattered. But race does matter. And the fact that most white parents had never heard of “The Talk” before Trayvon Martin’s death or Judge Scheindlin’s ruling is but one example of how it matters.
White parents didn’t know because, as a general rule, whites don’t experience being stopped and frisked by the police. Whites don’t know what DWB or SWB means (“Driving While Black” or “Shopping While Black”) because they’ve never experienced either one. Ask a black person in the U.S. what they mean and they’ll answer immediately. Several years ago Marlene asked graduate students in a cultural diversity class if they knew what DWB meant. Two white women and a black man in the class started giggling and Marlene asked them why they thought the question was funny. One of the women responded, saying that she and the other white woman were driving to class the previous week with the black man, who was behind the wheel, when he was stopped by the police for no apparent reason. She said that until that moment, they didn’t have idea what DWB meant, but they were very aware of it now.
Both of our sons experienced DWB soon after they had their driver’s licenses. One was followed on an interstate highway by a state trooper who would alternate moving parallel in the left lane to get a good look at who was driving and then falling back behind the car. The other son, who was with a Latino friend and had parked on a street near our home in the middle of the afternoon, was stopped by a white police officer and asked for his name and where he lived. When our son gave his address two streets away, the police officer instructed him to ‘Be on your way.’ Fortunately, neither young man was asked to get out of the car. Other young black men have not fared so well.
One African American family that we became friends with when our sons were in middle school told us that they didn’t let their older son drive until they were comfortable that he knew how to be “properly deferential” if he were pulled over by the police. Until then it had never occurred to us that we would need to add training in “how to act in the event that you’re stopped by the police” to our list of teenage driving skills. It never occurred to us because as whites we were unaware of the experiences of young blacks. We both had talked with black men in our classes who had been detained or spent the night in jail after being rounded up by police looking for a “young black man in a hoodie.” But we didn’t extrapolate from our students to our children.
Most whites are unaware of how racism works and how race, ethnicity, and culture are linked. This is primarily because of what Peggy McIntosh (1992) calls “white privilege.” McIntosh says that whites carry ‘an invisible package of unearned assets.’ These assets or privileges include, for example, being in the company of people who are of the same race whenever they choose, turning on the television or going to the movies and seeing members of their race, finding a hairdresser who knows how to cut their hair, buying flesh colored bandages that match their skin, doing well without being called a credit to their race, or, conversely, not doing well and having that lack of success be attributed to their race. Perhaps the most significant privilege whites (or anyone who is a member of a majority culture that holds power) have is the ability to know nothing about the experiences and cultures of people who are not like them. White privilege means that being white is the norm against which everyone who is not white is measured. And even more powerfully, it means that when whites are in the company of other whites, they do not have to think about race at all. That is one reason why whites are often perplexed when they are asked to talk about being white. “White” is rarely seen by whites as a racial category.
Whites who adopt African American children must be prepared to unpack what McIntosh (1992) calls their ‘knapsack of privileges’ and to open themselves to learning about and understanding the experiences of blacks. That means that you have to talk to your sons (and daughters, for they also face serious consequences of social and cultural assumptions about girls and women of color) about how to deal with cultural perceptions of black men as violent and threatening.
Here are some things to keep in mind if you are the white parent of a child of color, especially a black boy:
- You are no longer just a white person. You are now part of an interracial family. Your child’s racial identity is an integral part of your family identity, which means that your identity has also changed.
- Race matters. And because it matters, you need to be open to learning about how and why it does.
- You must have “The Talk.” You must prepare your child to deal with the cultural perceptions of their racial identity. White parents of black boys must have “The Talk” with their sons. Just as you would ensure that your teenage son knows the importance of practicing safe sex and using a condom, you need to ensure that he knows how to behave if he is stopped by the police for a DWB. Unfortunately, all children of color need to be taught that race still matters.
Congratulations to Liane Holliday Willey (pictured left) and Jennifer Cook O’Toole who have both been honoured by GRASP (the Global and Regional Asperger Syndrome Partnership) with the organisation’s 2012 Distinguished Spectrumite Medal.
The award will be presented to them at a gala event today in New York City.
Jessica Kingsley Publishers is proud to publish both of these award winners!
Jennifer Cook O’Toole has Asperger syndrome and is the mother to three young Aspie children. She graduated from Brown University, and attended Columbia University’s Graduate School of Social Work. She has previously worked as a social worker, and a teacher in both special needs and mainstream education. She served on the Family Advisory Board for Levine Children’s Hospital, North Carolina, and regularly gives presentations at hospitals and local universities on special needs parenting. In 2002 she was nominated for Disney’s Teacher of the Year Award and she is due to receive GRASP’s annual Distinguished Spectrumite Medal 2012. She lives near Charlotte, North Carolina, USA.
Liane Holliday Willey is a doctor of education, a writer and a researcher who specializes in the fields of psycholinguistics and learning style differences. Dr. Willey is a married mother of three, the owner of an equine boarding facility, and the Senior Editor of Autism Spectrum Quarterly. She also has Asperger Syndrome. A frequent guest lecturer on ‘Aspie’ topics, Dr. Willey is an energetic educator and advocate of Asperger issues. She lives in Rockford, Michigan, USA.
Copyright © Jessica Kingsley Publishers 2012.
In this video, Christine Bryden – author of Who will I be when I die? and Dancing with Dementia – gives family members, carers and professionals an insider’s perspective on what it feels like to have dementia, and what they can do to help.
Stay tuned for more videos from Christine Bryden and her husband, Paul, on the JKP Blog!
Christine Bryden has worked in the pharmaceutical industry and as a senior executive in the Australian Prime Minister’s Department. Following her diagnosis with Alzheimer’s Disease in 1995, she has been instrumental in setting up local support groups for people with dementia and has addressed national and international conferences. In 2003 she was the first person with dementia to be elected to the Board of Alzheimer’s Disease International. Her first book Who will I be when I die? was published in 1998 and has been translated into several languages. She lives in Brisbane, Australia.
Since Christine Bryden was diagnosed with Alzheimer’s Disease in 1995, she has been instrumental in garnering local, national and international support for people with dementia. In 2003 she was the first person with dementia to be elected to the Board of Alzheimer’s Disease International.
Who will I be when I die? is the “prequel” to her first JKP book, Dancing with Dementia. In it she recounts the emotional and spiritual rollercoaster she found herself on immediately after her diagnosis and provides unique first-hand insights into how it feels to gradually lose the ability to undertake tasks most of us take for granted.
In this interview, Christine reflects on the source of her unwavering positivity and sense of purpose, and the work still to be done to achieve greater empowerment and respect for people with dementia as individuals.
This is a profoundly moving and personal book – what made you write it Christine?
It was 1995 when I was diagnosed, at the age of only 46, and views were very different back then. People with dementia were thought to be mindless empty shells and to lack insight from the moment of diagnosis. There was no support for us, only for our families. I was amazed that this should be the case, but felt the task of changing these attitudes was too daunting for me, as I had enough problems coming to terms with my diagnosis.
But by what I call in my book a “God-incidence”, at the time that I was going through the awful time of testing and final diagnosis, I was part of a team preparing to run a weekend Christian retreat called Cursillo. This not only provided me with all the support I needed, but also put me in touch with Professor Elizabeth MacKinlay, who was also on this team. She is a gerontological specialist nurse, as well as an Anglican Minister. By the end of our time on Cursillo, I had plucked up courage to ask her to be my spiritual adviser, to help me through these dark and depressing times in my life.
We met monthly for prayer and encouragement, and Liz suggested that I think about writing my thoughts and feelings down. Soon a book began to emerge, reflecting on what it feels like to go through the trauma of diagnosis, the isolation of the stigma of dementia, and the fear of the future with this disease that is meant to take away your identity, your sense of self.
How did it feel to reflect back, and how are you now?
It was like looking into a window, peering into someone who was fearful of what the future held, who did not know she was about to embark on an exciting and challenging journey to change attitudes around the world!
It was also quite confronting to see the depth and breadth of my vocabulary, and the amount of research I had been able to do on the science of dementia. That was another window onto the past, opening out to someone I could no longer recognise as being me.
Once I realised how much had changed – even since 1996-1998 when I wrote this book – I then asked a former work colleague of mine if she could write a few words reflecting on what I was like in the mid 80’s to early 90’s, well before my diagnosis in 1995. She is one of a very few colleagues who has kept in touch with me over the years. Her words describe someone who has long ago been lost to the ravages of dementia:
“One of Christine’s defining characteristics was the speed at which she worked and the number of projects she juggled at once. … What do I see as being different now between the ‘then’ Christine and the ’now’ Christine? The main difference is speed – she certainly doesn’t juggle projects and ideas like she used to.
She is … much more passive – someone else does the organising. The ‘now’ Christine is slower, sometimes forgets the names of things, takes longer to understand new information, and may not remember what I have told her. … While the doctors may tell her she has lost a lot of brain function, they don’t realize how much she had to start with, so losing some brain cells has brought her back to average from stratospherically high.”
– Dr. Lyndal Thorburn, Viria Pty Ltd.
After 15 years, much has changed in my functioning. I am far more reliant on others, and far less capable than I was back then. I am increasingly frustrated and angry at my difficulties with finding words when speaking, and my equally increasing difficulty in writing words down. I am not as much in control of my emotions, so find it hard to control anxiety and depression, as well as anger and frustration.
When I wrote the book, I lived alone with my youngest daughter, who was then aged nine. Now I would no longer be able to live alone, and feel really blessed to have met and married my second husband Paul. With his patient support and encouragement, I am still doing far more than would be expected by looking at my latest scans, but still very much less than 15 years ago.
What gives you the strength to remain positive?
My Christian faith gives me deep meaning in life, giving me hope for the future and a perspective of my life being eternal, not simply limited to what we see on this temporal plane.
Now I have met so many people with dementia around the world, all at various stages of ability due to their declining function with these diseases that cause brain damage. Each person still remains an individual, with their true inner being shining through without words. The eyes remain a window into someone’s soul, and reflect our humanity.
Each person with dementia is making an important journey away from outer masks of cognition and function in our superficial world of what we do. They are travelling within, to a world of emotions, even if these become increasingly scrambled with the dementia. Emotions connect us to each other, allowing us to form relationships, which are a mark of truly being human. Then, deep within, their journey is to the inner self, their reflection in the divine. This is what gives me an abiding sense of meaning as I travel on this journey from diagnosis to death.
For me, I remain positive, feeling that I am gaining along this journey a far better sense of what it means to be truly human, and that much can be achieved to help others as I travel this path.
How much do you think our understanding of people with dementia changed since you were diagnosed?
When I first started, there was no support for people with dementia, as it was assumed we lacked insight. Indeed the words of an Annual Report in 2000 of an Alzheimer’s Association spoke of us as being “mindless empty shells”. At first when I spoke up, people did not believe I had dementia because I could still speak. They said that even if I was showing the early signs, I was not a credible representative of people with dementia because of my level of function.
Yet since then I have met so many others who have this diagnosis who are speaking out, and being included in the activities of Alzheimer’s Associations. We are receiving so much support and encouragement, and we are being listened to and respected. No longer are we being dismissed. By treating us as experts in what it feels like to have a diagnosis of dementia, services and support are being much improved.
More remains to be done, as there still is so little understanding of dementia in the community. Even people who come into my home to help me when Paul is not here don’t realise that dementia is a terminal illness, leading to death, nor do they understand that it is caused by brain damage as a result of more than around 100 different diseases. Still the mindset is of an elderly person in a nursing home who is unable to communicate, and who can be treated somewhat as a child.
Yet the diseases that cause dementia are diseases like any other, and can strike at any age, although they are more likely to occur as you get older. And after diagnosis people are usually still functioning reasonably well, with support and encouragement. It is inclusion and being valued that we need, not exclusion and isolation.
What do you hope readers will take away from your book?
An understanding of what it feels like to be diagnosed with dementia: the shock and horror of diagnosis, the overwhelming fear of the future, and the isolation as a result of the stigma surrounding dementia in society.
We can provide hope and encouragement to help overcome the fear, and we can do much more to change public perception of dementia that isolates us in a spider’s web of stigma.
Copyright © Jessica Kingsley Publishers 2012.
Last year my son Luke spoke to author Nick Hornby’s Treehouse Charity staff, and they were so impressed with him that they asked him to become a Youth Patron for their new Ambitious About Autism charity – watch their video below to see Luke and I being interviewed.
They also asked Luke to speak at their launch at the House of Lords on 10th February. Lord Tim Clement-Jones introduced Luke, and the next speaker after Luke was the Speaker of the House of Commons John Bercow.
The photo below is of Sally Bercow, wife of the Speaker of the House of Commons, myself, John Bercow, Luke, Luke’s sister Abbi, Luke’s dad and our MP James Gray, who wrote the foreword to my book, Life at the Edge and Beyond.
In other exciting news, Luke is off to the Artic on 24th March as a mentor to four pupils from the school that turned his own life around, and just today he received an invitation to represent Ambitious About Autism as a guest of Her Majesty’s Garden Party at Buckingham Palace.
Our life is crazy and the challenges of autism are still with us, but we share our story to help inspire and encourage others never to give up. Our children are exceptional!
Copyright © Jessica Kingsley Publishers 2011.
Georgina Derbyshire lives with her young son, Bobby, on the outskirts of a small town in Derbyshire, UK. Starting her career at a local newspaper, she then went on to work for the courts service, join the police force, become a financial advisor and now works in sales & marketing. As diverse a career history as she has had, she considers her most challenging and rewarding role to be that of mother to a child on the autistic spectrum.
Here, Georgina answers some questions about her book Stand Up for Autism: A Boy, a Dog, and a Prescription for Laughter and her action-packed life with Bobby.
Why might parents of children with disabilities feel like they need ‘permission’ to see the humour in their situations, and why is it so important that they do?
I think there are many times when we want to laugh but can feel a bit guilty. It may be because laughing at a situation or a comment could be perceived as laughing at the child or at their difficulties and challenges, but this isn’t the case at all. Some things that our children say or do can be especially poignant in certain situations and, quite often, they can say things that are so truthful, we just wouldn’t dare say them ourselves! There shouldn’t be anything sad or embarrassing about situations like these. We should see the humour in it and not feel guilty to laugh out loud. I think it is important to embrace moments like these as we have enough of a hard time and laughing can help redress the balance. Laughter is very good for stress too, so there’s no excuse!
How do you think your ‘upbeat and constructive’ attitude has benefited your son Bobby?
Given the chance, Bobby will willingly take-on the worry and anxiety of everyone around him and so it is important that I try and neutralise those feelings by being more light-hearted. It isn’t always easy and it took me a lot of time and practice, but I now try to throw a positive light on every negative thought that he brings to me. Of course, I do take his concerns and problems very seriously, but I encourage him to understand that the world is not completely full of doom and gloom. This attitude benefits Bobby by encouraging him to laugh with me and this, in turn, makes him feel not as concerned about his differences. I laugh at myself, too, which helps! If, as his mother and “anchor”, I show a tense and sorrowful attitude towards him and the autism, then he will grow up feeling the same about himself. That’s something I’ll always do my utmost to avoid.
How do you stand up for autism at home and in the community?
Whenever I learn anything about autism, I usually share it with Bobby. I let him watch TV programmes showing inspirational people on the spectrum and remind him of the wonderful characteristics he has which make him so unique. I never portray autism to him as a ‘problem’ or something to be ashamed of and I tell him that he will have an important purpose in life, just like everyone else. At the moment, he believes that his purpose is to find the missing 0.1% of bacteria that no cleaning products have yet identified!
In the community, I meet with parents of newly diagnosed children as I know people can feel very isolated at that time. I am a member of Derbyshire Autism Services group, the National Autistic Society and Mencap and I support every disability awareness campaign at local and national level. As Bobby is quite well known locally, he makes his own contribution to awareness-raising and this is usually a positive contribution (but not always!)
Why was it so important for you to write down and re-tell your stories?
I could remember the main stories quite easily, but occasionally I would forget something really funny that Bobby had said or done and so I decided to write them down. Bobby loves to hear these stories, over and over again, and so I didn’t want to forget anything. Getting the stories in a more structured format was hugely cathartic as it reminded me of some of the fantastic experiences we have had and what an absolute joy he is. As a result, I have become more determined to discourage some of the stigma that people attach to autism – recounting the stories made me remember just how awful I felt at the time and that I shouldn’t have been made to feel the way I did. These days, I refuse to be embarrassed. I politely explain to people if there is a problem, but then it’s up to them whether they choose to understand or remain ignorant.
You must have enough stories to fill a library… How did you decide which ones to put in the book?
I had to put Bobby’s absolute favourite stories in the book as I thought this was only fair. There are hundreds of things I would have liked to have included, but he refused permission for some of them as he considered them “strictly confidential”! Everything I have included has been double-checked with him to make sure he is happy about it and I feel this is the least I can do. I do have a tendency to ramble on a bit, so I had to keep the reader in mind and try not to overload them with too much. Funnily enough, there have been a number of incidents since writing the book and I have wished they had happened before so that they could have been included. I am still keeping notes though!
What is the most important lesson that parents can learn from your experience?
The most important lesson is to take every day as it comes and deal with everything as it happens. The challenges we face today may be very different to those we will face tomorrow. Worrying too much about today’s problems will mean you aren’t prepared for tomorrow’s because you’ll be too exhausted! I also think that it’s essential to support your child and live your lives in a way which suits your circumstances. No child is the same as the next, and the same goes for children with autism. Always remember that you know your child better than anyone else and you are doing the very best you can. If other people don’t understand that, then that’s not your problem. Be your child’s advocate, smile, laugh and stay very strong!
If you had to choose one of Bobby’s (many) hilarious quotes to put on a t-shirt, what would it be?
It would probably have to be “You know where you are with sheep”. I know exactly what he means with this one as sheep are predictable, don’t talk a strange language and are placid creatures. They also tend to walk in the same direction at the same time! Bobby said this comment with absolute conviction and feeling, and I couldn’t help but agree. Closely followed by “… but what about the other 0.1%?!”
Read a sample chapter!
Click the image below to read in full-screen.
Copyright © Jessica Kingsley Publishers 2011.
We’re very pleased to announce that JKP author Jan Greenman will be launching her book, Life at the Edge and Beyond, on Saturday, 14th November at the fabulous independent bookshop, cafe and gallery Woolfson & Tay, located in London’s Bermondsey Square.
“Jan Greenman shares her experiences of parenting a child with Asperger Syndrome, ADHD and Chronic Anxiety – how her life has changed, the challenges she has overcome and the choices she continues to face. This is followed by Luke Dicker, Jan’s son, sharing his experiences of what it means to live with these conditions; his struggles and his triumphs, and how he has emerged as a mentor to his peers. Jan and Luke share their experience in the hope that it will give support and encouragement to families like theirs.
This is an event you won’t want to miss – frank, honest and heartfelt.”