A new book for the brothers and sisters of people with Down syndrome

“What causes Down syndrome?”
“Why do people stare at my sister in public?”
“How do you deal with people who use the word ‘retard’?”
“Where will my brother live when he gets older?”

A new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters (Woodbine House, February 2009), answers these questions and more. Aaccessible to kids as young as 11, the questions in the book are based on brother-and-sister workshops led by its co-authors Brian Skotko, MD, MPP, a physician at Children’s Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker with Family Resource Associates, Inc. (Shrewsbury, NJ).

The book tries to fill in a long-standing gap: Resources and support services are geared toward parents, not siblings, say Skotko and Levine.“Oftentimes, siblings exist in emotional isolation – they have so many questions about Down syndrome and the feelings they are experiencing toward their brother or sister. They frequently wonder whether it’s okay to feel not only love and joy toward their sibling but also frustration and embarrassment, at times.”

Check it out.

A disappointing response...

I have my Google alert set to send me newspaper articles and mentions of sibling loss. Often, what I get is a pair of banks or companies being described as siblings, i.e. Freddie Mac and Fannie Mae. But recently I got a letter to the expert type of piece that appeared in The Connecticut Post. It touched on an area I’m interested in—and that’s very under-studied: Sibling loss at an older age.

I haven’t done a ton of digging in this area, but what I have done suggests to me that it’s every bit as painful to lose a sibling when you’re older as when you’re younger. (That, “well-they-had-a-long-life” never makes anyone feel any better.) In this case, the “expert” responder sort of got it, but had no idea what to do with it—so she punted and went with a topic she’s comfortable with, i.e. the importance of taking your medication.

I was…disappointed…in her answer.

Here’s what the person wrote in:
I hope that you can help me convince my mom to start taking her pills again. She went through a very traumatic experience with the passing of her sister. My mom and her sister were very close. Clara was nothing like my mother -- very organized, educated and always following the doctor's orders. She was considered healthy with only some blood pressure problems and occasional back pain.

She was taking all of her medications, went to her checkups and got a flu shot every season. She was the one to scold my mom for her casual approach to her failing heart (my mom was diagnosed with a weak heart and congestive heart failure three years ago). To my mom she seemed indestructible. Four weeks ago, my aunt passed away unexpectedly. She had a massive stroke. She was gone within less than a week.

She was not even 76 yet, and my mom is the older one at 80. Now my mom is very upset with doctors and will not take her medications. "What good is it -- Clara did everything they told her to do and look what happened!"I worry that she may be depressed, but I also worry about her heart. Please give some advice on how I can get my mom to believe in doctors again.

Dr. Beata Skudlarska, the geriatrician the paper tagged to answer this person, starts off pretty well. “I am truly sorry for what has happened to your mom, and of course to her sister,” she writes. “The loss of a loved one is always tough; it is even worse if you lose your sibling and a role model.”

Good so far. But then she goes off on a tangent that left me a little incredulous. “Maybe your story can give us a constructive opportunity to explore some important concepts about the reasons we take medications.”

Whaaaat?

She then goes off on the reasons we take medication (i.e. to stay healthy). Okay. First of all, I think most of us know that, and we didn’t pick up this Q&A because we were looking for a lesson in taking our meds. Secondly, after briefly acknowledging the problem—grief, loss, depression—she goes on her own riff, basically ending by saying this person’s mother is bound to see reason eventually and buck up and take her meds.

“Your mom will recover from this,” writes Dr. Skudlarska. “She is resilient.” (Um, how does she know? ) “I am sure she will get better and resume her medications. I am deeply touched by your story.”

I’m sure Skudlarska was touched, but she wasn’t listening, and as a result, I don’t think she helped at all.

Ugh

What's worse--the loss of a sibing, or the loss of a parent? That's not my question, incidentally. It's something I found while googling around with the phrase "sibling loss." Read more here.

Well this is amusing

It turns out two horror flicks--no doubt, TERRIBLE horror flicks--have a sibling theme. The Friday the 13th remake set to open, yes, Friday the 13th, features a man searching around Camp Crystal Lake (site of Jason's massacre) for his long-lost sister. I don't know any more details than that, but she must have been one of the randy counselors that so offended Jason's sensibilities. The other is called The Unborn, and features a young woman haunted by her unborn twin, who'd like to take over her life, thanks very much. Talk about sibling rivalry. (I'm guessing my friends at Twinless Twins aren't going to be too fond of this one.)

I've always said that there's an unspoken genre of sibling loss movies and books. But this is the first time I've noticed it in the horror genre. I wonder if there are others. Anyone?

Disenfranchised Grief

I just started doing the Open to Hope Foundation's sibling loss blog. Click here to see a new post on the subject of disenfranchised grief, i.e. losses that, for one reason or another, tend to be overlooked and/or ignored. If you're on this blog, you won't be surprised to hear that sibling grief is often disenfranchised.

(The picture, incidentally, is Timothy Hutton in Ordinary People, one of the best sibling loss movies, ever. I don't think he's actually all that disenfranchised in this movie--he's managed to call his loss to people's attention, though I'm not going to spoil it by telling you how. But his mom, played by Mary Tyler Moore at her icy best, just doesn't get it....It's all about her.)

Dealing with deification

"That Ted, he hasn't done anything wrong in twenty years."

That line came from Paul, in response to some issue in which my parents' were aggravated with me, and the spector of my brother's perfectness hung in the air. Paul managed to be funny and totally sum up the situation with that one line, something he manages to do a lot. (My brother, for the record, was amazing--but not perfect.)

I don't find a conflict in not thinking my dead brother as perfect. I loved his imperfections, too. But I think it's hard--especially when family members are on a different track--to not feel guilty about that, and also to not feel aggravated by others who take the deification route.

Plus, for surviving siblings, it can be hard to ever measure up again--as Paul's one liner brought home. It's just one of many ways that grieving within families gets complicated.

What brought this to mind? This unusually nuanced article about family grief in The Wichita Eagle.

Googling Ted

"I like to browse the G's with confidence."

-That's Buddy Glass in J.D. Salinger's Franny and Zooey, explaining why he won't cancel the phone number he and his dead brother, Seymour, shared when they lived at home together.

I totally get it. It's hard to think that someone that is permanently imprinted in your cells and your psyche has disappeared. It's nice to have a tangible reminder that they existed. Which is why I've found it interesting, in an odd sort of way, to google my brother's name and discover that, more than twenty years after his death, he has a web presence.


On a similar note, my therapist died a year ago, and I can't bring myself to delete her phone number from my cell phone. For a few months, out of curiousity, I actually called it, to see if her machine would still pick up. After about nine months, the voice on the machine changed to someone else's. I knew exactly why her family had let it go so long, though.

My brother exists, if only in cyberspace. Ted never got to see the internet, but he would have loved it.