csiblog

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

A Site For Parents of An Autistic Child

Parents-cafe.com includes extensive resources for parents of autistic children, including a useful blog—Child With Autism. The site provides extensive information on autism—including medical updates, specific advice for living day-to-day with autism, and helpful connections to other sources of information. In short, it’s a useful aggregation of information on all aspects of autism—all geared toward parents.

Multiple contributors include parents of autistic children, experts in the field, and others. Blog posts cover a wide range of topics, such as tips on handling specific life challenges -- getting a haircut, dealing with public restrooms, and more, to educational issues Many are links to updated, autism-specific content on Parent-cafe.com. Others reach further afield.

The blog entries tend to be fairly detailed and specific, and are more educational than newsy. Recent entries – and the blogs are very active -- include an autistic sibling survey, an extensive autism resources directory, and a listing of national and local autism groups.

Missing is the back-and-forth, more conversational tone that would come from a blog that enabled open comments.  So the Child with Autism site 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 parents searching for help.

From former U.S. Secretary of Education Dr. Robert Paige: “I can assure you there is no more powerful advocate for children than a parent armed with information and options.” At Carespace, we take these words seriously, and are in the process of building a platform so that all caregivers -- not only parents of children with special needs-- can gather and connect with each other. We believe that all caregivers have insights and experiences that are common among us – emotional, financial, legal, medical and other issues affect all caregivers.

Stona Fitch
carespace.com

Caring From Afar

I heard my wife chatting on the phone with her 85-year-old mom Edythe this morning, her regular morning call to her mom in Florida from our home in New York.  They were talking about Edythe’s new hearing aids, or at least attempting to do so.

First I heard, in normal voice, “Did you get the new hearing aids?” Then I heard, a little louder, “the new hearing aids, did you get the new hearing aids?” Then shouting at the top of her lungs, “DID YOU GET THE NEW HEARING AIDS?”

Guess not.

We all had a laugh about this --  my mother-in-law  often laughs at her inability to hear well. And we feel lucky that, for now at least, this is her only real problem.  My wife and her sister are constantly on the phone with their mom making sure she’s ok, helping her deal with life’s more complex problems like health insurance claims and  such. And they travel down to see her often too.
But taking care of someone from afar can be extremely stressful. Before my father-in-law died two years ago, my wife and her sister were flying back and forth constantly, on the phone many times a day. Trying to get doctors to call them back, prescriptions delivered, all of this was time-consuming, frustrating, and deeply burdensome.

CNN.com recently posted an article on the issue of caring from afar that has some good advice. I’d love to hear your comments about this issue as well.

Thomas Falconer
Carespace.com

Medical Clinics in Convenience Stores

Would you really want to put your health in the hands of convenience stores selling cigarettes, candy, and magazines? This question hovers behind the recent controversy over whether Boston-area retail convenience stores should be allowed to offer limited healthcare clinics (e.g., CVS’s Minute Clinics) to handle sore throats, ear infections, and the like.

Boston Mayor Thomas Menino weighed in against the move, the Massachusetts Public Health Council seems to be for it, and much of the discussion is relentlessly focused on potential quality of care and safety issues. Let’s face it -- the market (and plenty of regulation – this is Massachusetts, after all) will quickly address quality of care. For caregivers, access to care is the more pertinent issue—and the real benefit for us.

Enabling low-priority issues to be handled at these convenient, walk-in clinics will free up the schedules of swamped General Practitioners (GP’s) to handle more complex, challenging, chronic medical conditions—the kind that caregivers struggle to get for their loved ones every day. As caregivers, we spend a fair amount of time in waiting rooms and hospital lobbies. Removing even a little of the considerable burden from GPs would help streamline access to specialized attention when it’s needed.

Plus, these clinics will give caregivers fast, as-needed access to routine diagnostic tests (throat cultures, etc.) when the problem is less serious. In short, getting your Alzheimer’s-afflicted mother’s blood pressure taken in 10 minutes at a convenience store beats waiting around the lobby of your doctor’s office for an hour or two.

With the right approvals, monitoring, and expectations, these new types of clinics seem to bring a simple and sensible addition to the healthcare mix. If convenience stores manage to make money offering these services, more power to them. If only our healthcare system was so responsive to the needs of the marketplace.

Should we rely on convenience-store clinics as frontline identifiers of more serious conditions, such as diabetes or cancer? Of course not. But can caregivers look to these walk-in clinics as a new, convenient resource? Absolutely.

Stona Fitch
carespace.com