Family Members Talk About Their Experience with Paralysis

In this video from the Christopher & Dana Reeve Foundation, family members talk about their different experiences with paralysis.

Trying to find a sibling who was institutionalized?

National Find Family might be helpful to a reader who emailed me looking to find a sibling who was institutionalized years ago. Located at TheArcLink.org, the page contains links to other resources.

This article also contains a link to state agencies that provide services to the developmentally disabled.

The Condition: A book review

I'm reading The Condition by Jennifer Haigh, which is available on Bookshare for members and Amazon. It'a a novel about family dynamics, but deals with them over a number of years, which is an interesting approach. As the novel begins, thirty five year old Paulette's and Frank's children are in their teens and preteens. They are just noticing that their daughter Gwen is not developing as quickly as her cousins are. The book then skips to when the children are in their 30's, after Paulette and Frank have divorced. Billy, the oldest, is hiding a secret; Gwen, who was diagnosed with Turner Syndrome*, struggles with her relationship with her mother and vice versa; and Scott, the youngest and labeled the most "difficult" child, sees his own issues in his son.

I haven't finished the book yet, but find the family and relationship dynamics that are described concerning Gwen and her parents more interesting than in most books I read that deal with the issue of raising a child with a disability or illness. For example, Frank is a scientist and he's always seeking out the latest treatments, then questioning what was done or not done. Paulette, on the other hand, is mostly concerned with appearance - how Gwen dresses to minimize her looking like a boy due to her small stature, for example. She also pushes her daughter into awkward social situations, like a nightmare blind date with a six foot plus basketball player, trying to normalize things (she thinks she knows what normal is). Although there is no question that, despite the dysfunction, family members love each other, the book realistically portrays how not allowing Gwen to live with Turner Syndrome and be herself causes everyone more pain in the end than is necessary. My understanding is that this gets somewhat resolved, but I'm not done reading the book yet.

What's most interesting is that the author shows that if these dynamics didn't swirl around "the condition", they would probably be about something else, considering the petty concerns of the characters at the opening of the novel. Very good read.

*Turner Syndrome results in short stature and loss of ovarian function. Please click above link for further information.

I sound like Boris Karloff...

...which is making my voice recognition software very unhappy. But it's a great way to get rid of telemarketers.

Sometimes life just keeps giving us lessons on not taking ourselves too seriously. Boris Karloff once said "My wife is a woman of very great taste. That's why she's never seen any of my films."

My brother in law is back in the hospital, after having chest pains Friday evening. Tomorrow he's having tests to see what's going on. Could be just cautionary, might need another stent or bypass surgery. Will have to see.

I called my nephews to talk to them and they asked if I should be talking. "You sound like you're dying," one said.

"No, my voice just sounds like Boris Karloff," I said.

"Who's Boris Karloff?"

"I'll send you a link," I said. "It hurts to talk."

And so it does. So I'll keep this short. Would truly appreciate prayers and positive thoughts for my brother in law, sis and nephews.

Update: The tests showed that my brother in law is fine. No need for more surgeries.

Newly injured paraplegic talks about experience

In this interview, a T6 paraplegic speaks about her experiences after her injury, including rehab, home modifications and coming home to her family.

Living with MS as a family : scooter sleigh ride

I love it when I find images of people with disabilities having fun! Please feel free to send me links to any you find or may have so we can share them with others.

"Taking better care of caregivers" - new bill in California

Tomorrow is Mother's Day so this post is dedicated to everyone who is special in someone else's life - someone whose spiritual generosity has touched another. That includes caregivers of all kinds IMHO.

Yet work environments have traditionally not provided protection - and continue to discriminate- against workers such as pregnant women and caregivers. It is being called "Family responsibiilities discrimination" which does not support family values.

"Caregiving discrimination lawsuits have exploded — with plaintiffs often winning...
These laws and other actions are based on an emerging legal doctrine built around the concept of "family responsibilities discrimination." The doctrine is based on evidence that pregnant women and caregivers often are passed over for jobs, dinged on performance reviews or blocked from promotions. Some employers assume they would be absent more frequently and won't work as hard or be as committed to their careers as those without caregiving duties."

One California lawmaker is stepping in with a proposed bill that would assist family caregivers with jobs outside the home extending protection under current job discrimination laws. (Click above to read the entire article).

"For example, federal law requires employers to accommodate the needs of disabled workers and grant employees leave to care for sick or disabled relatives. But no federal statute expressly forbids job discrimination on the basis of an individual's parenting status.
California law expressly bars job discrimination on the basis of sex and marital status, among other factors, but not caregiving.
A bill now before the state Senate amends the Fair Employment and Housing Act, extending that protection to parents and workers with an ill or disabled spouse or aging relatives. SB 836, sponsored by state Sen. Sheila Kuehl (D-Santa Monica), would apply to businesses with five or more employees. It is scheduled for a vote in the Senate Appropriations Committee on Monday."

Via latimes.com

What I Learned: Student Responses to Family & Society Course

[visual description: Photo of a pile of text books on a desk.}

Sr. Edith from Monastic Musings is posting student responses to one of her college courses at the College of St. Scholastica at her blog. I've been enjoying them immensely since they cover a wide range of topics of interest. So I decided to put up a link over here - this is the first one if you click above and you can find the rest over there!

The First Blog Village Carnival :Family Theme

Click above to visit this wonderful carnival!