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

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 

Autism Blogs: Lots of Them, Plenty of Info for Caregivers

Autism Blogs: Lots of them, plenty of info for caregivers

I just spent most of a day navigating through the maze of blogs that cover various autism topics. Without too much digging, I found dozens of informed, passionate voices, lots of useful information for caregivers, and an extremely engaged blogging community focused on all aspects of autism, Asperger Syndrome, and related issues.

It’s important to note that there are legendary and acrimonious fights within the autism community, generally around the origins, causes, and diagnosis of autism. Some bloggers are partisan and political, others stay neutral and focus on caregiving and more practical concerns. Luckily, there are hundreds of voices out there to provide balance and insights.

Among them are dozens of very good blogs that address the significant caregiving challenges of autism. Most are geared toward parents taking care of children with some version of autism. And most go beyond core medical information to provide practical, day-to-day caregiving advice.

For example, Parent-Café.com includes extensive resources for parents of autistic children, including a useful blog—Child With Autism. Here you’ll find extensive information on autism—including medical updates, specific advice for living day-to-day with autism, and helpful connections to other information. It’s a useful aggregation of information on all aspects of autism—all geared toward parents. Child with Autism is more of a trip to the library than a morning at the coffee shop. But it manages to convey a huge amount of autism information efficiently to caregivers who need it.

While not exclusively for parents or caregivers of autistic children, About.com’s Autism group—led by Lisa Jo Rudy, mother of an autistic son, Tommy—includes a robust autism blog that covers wide-ranging issues, from insights on early intervention to caregiving tips.

While we’re on the mom side of the blogosphere, Joys of Autism provides personal experiences of Estee Klar-Wolfond, an autistic mother in Toronto (with an autistic son, Adam), and founder of The Autism Acceptance Project. Her blog balances the day-to-day issues and insights with larger advocacy issues and other information.

At Autismville (part of Parents.com), one of the most cited autism blogs around, you’ll hear the articulate, funny, and extremely informed voice of Judith Ursitti. This wide-ranging blog, subtitle—Life on the Autism Spectrum—gathers autism-related news and information, provides a lot of great resources and references, and includes a lot of comments. Users must be members of Parents.com to contribute.

Autism Vox provides a web soapbox for autism mom Kristina Chew, who provides an engaged, more advocacy-focused blog that draws in lot of people who weigh in with comments. And Autism Diva isn’t afraid of taking on hard topics, from the aforementioned controversy on the possible causes of autism to rebutting autism mom/celebrity Jenny McCarthy’s characterization of autism in her recent book.

Stona Fitch
carespace.com

Caregiving Military Moms Buck the System

I just finished reading a story in the New York Times about  three young military men, two of whom sustained major injuries in Iraq, one who injured himself in a motorcycle accident. Their lives are now filled with pain, suffering, and a constant need for comprehensive rehabilitative services. So the military mom's fought the Veteran's Administration to get their sons' into private care.

But along with this tragic and heartbreaking story is one of caring, courage, friendship, and hope. The injured men’s moms have become good friends, partners in care.

One is from the state of Washington, the other is from Arizona, and the third is from Virginia. And aside from bringing to light the disgraceful treatment their sons’ were receiving from the Veterans Administration, the story also sheds light on how strong we caregivers become when we work together, share experiences, and really connect with each other around our lives as caregivers.

Thomas Falconer
carespace.com