csiblog

World Autism Awareness Day

Last December 2007, the United Nations declared April 2, 2008 to be World Autism Awareness Day in perpetuity. Since then, there has been a steadily growing stream of information about and coverage of Autism  in major media outlets. Of course, this kind of major attention can only help, and also helps bring attention to the many other issues many of us face as special needs parents.

Adding to the swirl of information about Autism has been the controversial decision last November 2007 by the National Vaccination Injury Compensation Program (VICP) that a vaccine containing Thimerosol may have caused the onset of Autism in a 9-year old girl.

A few weeks ago, we posted here an entry on sites about Autism that we like. There are many more sites about Autism and other diseases and disabilities that we did not have room to list, so please let us know about sites and blogs you trust.

In the meantime, here are a few sites about World Autism Awareness Day and some of the events surrounding it.

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/
http://www.bio-medicine.org/medicine-news-1/Autism-Speaks-to-Celebrate-World-Autism-Awareness-Day-with-Day-Long-Series-of-International-Events-on-April-2-14013-1/
http://www.comedycentral.com/shows/night_of_too_many_stars/index.jhtml
http://autism.about.com/b/2008/03/16/cnn-wants-your-stories-and-questions-about-autism-for-a-full-day-of-coverage.htm

Thomas Falconer
carespace.com

Sites and Blogs for Special Needs Parents

Blogs and other online resources for special-needs parents range from one person telling their own story to vibrant online communities of parents sharing information and experiences to pure advocacy sites. One common thread is passion—special needs parents have plenty of it. And another is information—special needs parents rely on a steady flow of it. Here’s a quick overview of sites and blogs where you’ll find some of both. Please do help all of us by commenting on the sites we cover here, as well as on sites and blogs we may have missed.

•   The Special Parent -- Good general resource for parental caregivers of special needs children. Wide-range of information -- advocacy to strategies to specific day-to-day advice , even recipes— well-organized, well-written. Run by Kyron Arambula, a passionate special needs mom, who says the site is “a resource for information through my experiences, both good and bad.”
•   The Special Child -- Strong emphasis on encouraging parents and caregivers to share their stories, good and bad. Run by the Resource Foundation for Children with Challenges (RFCC). Seems to be undergoing a much-needed web makeover.
•   Parents Helping Parents --  Major, member-supported organization dedicated to helping families with special needs children of any age. Resources, events, support, services.  Special interest groups (under Support) have issue-specific information.
•   Federation for Children with Special Needs --  More focused on advocacy. Stated goal is “informing, educating, and empowering families.” Coalition of parent groups representing children with a variety of disabilities. Primary focus is connections to helpful organizations and resources.
•   Special Need Parent ; The Life and Times -- Lots of well-categorized content—particularly strong in autism—posted by mother of two special needs sons. Excellent  blogroll to other sites and resources.
•   About.com’s Parenting Special Needs -- Sub-section that covers essentials, a variety of other topics, and has lots of ads. More newsletter than community center, this site includes some well-organized information on caregiving, though it seems a bit impersonal and the blogs are perfunctory.
•   SNAP (Special Needs Advocate for Parents) – Refreshingly simple. Has a daunting 42-word mission. Boiled down -- SNAP is about advocacy for special needs kids and caregivers. Check out the extensive SNAP Community & Resources [Our Services] for great disease-related info, government info, and more.
•   Listen to Our Stories – Not caregiver focused but a powerful site that gathers first-person stories from young adults and children with disabilities. It doesn’t get more real world than this. Excellent Resource Links to topic areas and web sites that focus on specific disabilities.
•   AdoptionBlogs.com has a long list of active blogs on parenting adopted children with special needs.
•   Our-Kids—Support group for parents and caregivers of children with physical and/or mental disabilities. Postings of photos, advice, and other related information, including a good “special needs tips” section.
•   Our Special Kids – Community focused. Provides advice, books, articles, blogs, and other resources. The discussion forums provide personal insights and tips. Like many other special-needs forums and blogs, they’re moderated by a mother who understands the challenges of special-needs parenting.
•   Council for Disability Rights --  Dedicated to advancing rights and enhancing lives of people with disabilities. Extensive site that covers advocacy, issues, and some caregiving-related topics. The Useful Links section  provides links to online communities, national agencies, parent training information, more.
•   Tools for Parents of Children with Disabilities and Special Needs – from coping.org.  Includes information focused on learning disorders. Tools section has lots of details and reference information.

Stona Fitch
carespace.com

Alzheimer’s and Dementia Blogs: Ten We Found Useful

My sister and I recently found ourselves taking a crash course in Alzheimer’s as our 75-year-old mother’s forgetfulness escalated to a more clinical level. The wake-up call came from the California Highway Patrol, which found our mother parked by the side of the highway in Santa Rosa, 200 miles north of her home. She had no idea where she was.

Like millions of others, we were suddenly thrown into a complicated caregiving challenge, and needed  lots of information, fast. Fortunately, online resources about Alzheimer’s and dementia are extensive, including some excellent blogs. Here are ten worth checking out:

•    Alzheimer’s Notes provides great educational information and caregiving advice, all well-categorized.

•    The Alzheimer’s Association has wide-ranging message boards, including a popular Caregivers Forum that covers the full range—from personal stories to advice. As someone said recently on the forum, you have to have a sense of humor to care for someone with dementia.

•    The Tangled Neuron gathers wide-ranging research reports and articles on memory issues and decodes them for caregivers and other non-medical readers. Excellent links to other sites.

•    The Dementia Caregiver’s Toolbox is the real deal—plenty of great, real-world advice, and focused almost exclusively on professional and family caregiving. For example, a recent post provided tips on dealing  with “dementia elopement” (great phrase) or wandering.

•    The Caregiver’s Beacon is a very popular blog that provides a lot of great resources for Alzheimer’s and dementia caregivers—plus extensive links to other blogs. A bit cluttered, but a good place to start your search for information.

•    Dementia Blues is a sporadic but very well-written, highly personal blog from writer Paula Martinac. Its subtitle—“Funny/Sad Ruminations by a Baby Boomer On Having Two Parents with Dementia” pretty much says it all.

•    HealthTalk’s Caregiver Notes offers a personal take on caregiving, with good information, and intra-site content from within HealthTalk.

•    Minding Our Elders says that its mission is “to shine a light on the isolation often felt by caregivers and seniors and to give them a voice.” Clear posts from well-informed author Carol Bradley Bursack and lots of links to other resources (including various associations and publications) make this a great blog for caregivers.

•    Spiritual Caregiving adds a spiritual perspective to the challenges of family caregiving for loved ones with incurable memory loss and dementia. 

•    At OurAlzheimers.com—part of Health Central—you’ll find shared posts from caregivers and people living with Alzheimer’s and vascular dementia.

As always, one blog tends to lead to another, then another. After some exploring, you’ll have a wide-ranging collection of resources—some informational, others more personal. Caregiving for a dementia-afflicted parent, spouse, or other relative is difficult and sometimes downright bizarre. Reading about the experiences of others puts it in perspective and provides helpful advice.

Stona Fitch
carespace.com

An Interview With Nell Casey

A few days ago we reviewed here An Uncertain Inheritance: Writers on Caring for Family, a collection of essays edited by Nell Casey. The same day a dear friend who is taking care of her mom called me to say that I should download WNYC radio’s Leonard Lopate show on caregiving. On his show, from December 12th, Lennie – as we affectionately call him here in New York -- talked with author Nell Casey along with Andrew Solomon and Susan Lehman, contributors to the book.

The show is called “The Rewards and Challenges of Being a Caregiver,” and is a moving and fascinating discussion of caregiving, from the impact of those returning from Iraq in need of long-term care, to opting out of the nursing home system for an aging parent, to the deep financial chaos caregiving can cause.  There is also talk about the rewards of taking care of someone you love through a serious illness, or as they approach death.

So the discussion of caregiving as a concept and caregivers as a major demographic gains momentum every day. One of the more auspicious comments author Nell Casey makes is that, at some point, we will all become caregivers. Let me know what you think of the broadcast.

Thomas Falconer
Carespace.com 

Book Review: An Uncertain Inheritance: Writers On Caring For Family

Caregivers generally summarize their situations into easy-to-handle overviews. The details are often too painful to go into. This inherent tendency toward reduction makes An Uncertain Inheritance: Writers on Caring for Family an insightful addition to the growing library of non-fiction (and fiction) focused on caregiving. These essays, edited by Nell Casey, come from professional writers, including medical writer Dr. Jerome Groopman, cartoonist/novelist Stan Mack, and novelists Julia Alvarez, Sam Lipsyte, and others.

These are writers who are willing and able to dig into the details and convey an accurate and extremely moving sense of what day-to-day caregiving involves. They’re able to capture the numbing difficulty of caregiving—from its tedious afternoons to revelatory moments.

This wide-ranging collection of very personal stories covers the full spectrum of caregiving, from families caring for young, critically ill children to adults caring for aging parents.

Several essays provide the additional perspective of being the one cared for—during mental illness, a debilitating tropical illness, and breast cancer.

Though beautifully written, wise, fascinating, and even funny at times—this isn’t easy reading. The recurrent theme of isolation winds its way through almost every essay like a dark thread. A daughter cares for her Alzheimer’s-afflicted mother, largely alone. A couple faces the death of their daughter in the ICU, alone. Another couple faces the profound challenges of autism with virtually zero support from the healthcare system.

The New York Times, in yesterday's Book Review section hinted at the problem, saying that “our society would rather not focus on this area of experience.” Going further, it’s easy to point to a national obsession with youth and vitality as a reason why caregiving isn’t as interesting as, say, celebrities overdosing or cycling in and out of rehab. But the problem goes deeper—our culture values building personal wealth and power over building communities. Communities are boring—until you need one.

I spoke with an Algerian friend recently, whose mother has Alzheimer’s (as does mine). His entire neighborhood in Algiers keeps an eye on his mother, spends time with her, and spreads the work of caregiving beyond the immediate family. It’s a shared responsibility of the community, not a personal burden.

Taken as a whole, these stories point out a strong need for broad, national support for caregivers, for more awareness, for more sharing of the rich and often instructive stories of caregiving. It’s not sad or heartbreaking work, as the Times review focused upon. Instead, caregiving is intense, messy, complicated, and ultimately,  spiritually uplifting.

Stona Fitch
Carespace.com

Caregivers in the News

Caregivers are getting a lot of press lately, and rightfully so. As I’ve discussed here before, there are now over 45 million of us in the U.S.

A profile and an interview from today’s web:

On cnn.com, a story about Nancy Davenport-Ennis, a cancer survivor who became a caregiver activist while helping a friend deal with her own cancer diagnosis. Ms. Davenport-Ennis went on to found the Patient Advocate Foundation.

On NPR.org, an interview with Suzanne Mintz, President and Co-Founder of the National Family Caregivers Association. Ms. Mintz, author of “A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard,”  talks with Terry Gross on how to make caregiving easier.

Thomas Falconer
carespace.com

Why Facebook Doesn't Work for Caregivers

There are now at least 330 Facebook groups for caregivers. Almost all of them are for non-professionals -- none are very active. There are a few exceptions, like groups on malaria and leukemia, but most groups quickly become dormant.

This lack of community involvement underscores one of the problems with Facebook – its vastness may be impenetrable. A caregiver trying to connect with another caregiver, or looking for information and support, will be hard pressed to get a response via Facebook. The noise on Facebook is disorienting and distracting. The Facebook experience, as far as it goes, may be very broad, but it’s also shallow.

As caregivers, we want a community ecology that’s easy to use. It has to be designed around the caregiver’s sense of time – meaning, there’s little to waste. But also, the experience ought to be a relief from the burdens of care, even while the content is often about those burdens.

A purposeful, valuable community of caregivers really does require its own platform. Millions of caregivers need to connect, so it makes sense that the community cannot be dependent upon the success or failure of a behemoth like Facebook.

Progressive, vertical, social networks organized around a specific area of interest, such as caregiving, are achieving extraordinary critical mass and levels of engagement. Sponsors are listening in, and participating in meaningful ways.

Facebook offers an entertainment element that has, so far,  won the allegiance of a generation. But when it comes to caregivers, it’s not the right solution.

Thomas Falconer
carespace.com

Book Review: Dementia Caregivers Share Their Stories

“Dementia Caregivers Share Their Stories” by Lynda Markut and Anatole Crane (2005, Vanderbilt University Press) charts the inevitable progression of dementia from initial diagnosis to difficult end-of-life decisions. But this honest (sometimes brutally so) guide stands out from the growing body of literature about dementia by focusing on the caregiver, not the progression of the disease. It takes an unflinching look at the critical role caregivers play in addressing this increasingly critical health issue.

While the recent film Away from Her captures the poignancy of the decline of dementia, this book shows the messy, daunting, and often surreal challenges of dementia caregiving. We hear unscripted comments from spouses, children, and others who care for people afflicted with Alzheimer’s and other types of dementia—every day, often alone.

The dozens of first-person insights and stories included in the book came from an Alzheimer’s/dementia support group in Woodstock, Illinois. So they carry a powerful immediacy and openness. The book’s subtitle is telling and accurate: “A Support Group in a Book.” Given the lonely and isolating work of caregiving, it’s a much-needed approach.

Through these stories, we learn insights and strategies borne from experience and necessity. How can you deal with the inherent stress, sadness, and depression triggered by dealing with dementia every day? How do you know when the time is right to make the hard choice to transition a demented loved one into a care facility? How do you say goodbye to someone who has been gone for years?

The answers are delivered with a refreshing Midwestern directness, free from self-pity. You finish the book convinced that caregivers are the true unsung heroes in America today.

And there is a fast-growing need for family caregivers. A 2005 study by The Lancet estimates the total number of people with dementia today at more than 24 million, rising to 81 million by 2040. There is a new case of dementia diagnosed every seven seconds.

Are we ready? “Dementia Caregivers  Share Their Stories” shows how ordinary people can rise to the challenges of caregiving—with plenty of help, shared advice, and support.

Stona Fitch
Carespace.com