Monday, December 14, 2009

Square Pegs and Round Holes : Living with Asperger Syndrome

1972 : My brother, me, and Aunt Cindy (with dog)

When I was pregnant, I bargained with the Universe. You don't know quite what you're going to get until the baby is born and develops ... I said, "I can handle a kid with Down Syndrome. I can handle a kid who's deaf. I can handle a kid with special needs. However, I'd have a really hard time having a kid with Autism." A few years ago, we found out my brother has Asperger's Syndrome. The great irony is that I'd been living with "high-functioning' autism my whole life without even realizing it!

Last year, The Wisconsin Hospital Association was collecting personal stories which provided reasons why people in health care occupations chose their careers, in hopes of inspiring others to join the field. This is the question I addressed :

Has anything happened in your career that reaffirmed your decision to work in health care?

When I was in Library School, I worked part-time in a hospital library. I liked helping people connect with the information they needed to make informed healthcare decisions. I help physicians, nurses, patients, and their families. At some point in our lives, we all need quality health information. This can significantly impact people's lives for the better. Some days, I get to do research and offer the best available evidence for a procedure or treatment, or to help change policies to improve patient care or patient safety. Some days, I help people research a new diagnosis. They find out that others have been through it, and they find a path to get themselves through it, too. That can make a tremendous difference in terms of relieving anxiety.

Consumer health librarians help patients understand their conditions and treatments, help them find communities of support, and help them locate resources for equipment, services, and financial assistance. For one example among many, I helped a patient with a new diagnosis of diabetes find a book written in plain language that told him how to get through the holidays and family gatherings on his new diet! Another patient was lost his leg. His prosthesis caused him great discomfort. I was able to get him connected with The Amputee Coalition of America which offered not only support, but also options for a better fitting, more comfortable prosthesis.

I was recently reminded of how my help as a Librarian can profoundly affect people for the better in a very personal way. Last summer, my own family needed some research. At the age of 35, my brother was diagnosed with Asperger’s Syndrome. For years my family wondered why my otherwise smart brother wasn’t able to function in the world. He couldn’t hold a job, made poor decisions, didn’t have many friends, just didn't seem to fit in anywhere … Over the years as a hospital librarian, I had collected several books, handouts, and websites on Asperger’s. With this information, the pieces of the puzzle came together. Now, we know that his brain is literally wired differently. We have a whole new understanding of what to expect, what situations to beware of, how we can support him, what he needs to work on, and what he might still be able to accomplish with his life. We know what we’re dealing with now, and we’re ALL learning to cope with this form of high-functioning autism. My brother is currently earning a college degree in Physics. He’s found a community where he fits. Thus the road to recovery started at a health science library.

Wednesday, December 9, 2009

Me and Gramma Pickles


I love this picture of me and Gramma Pickles. This is one I don't want to forget. You can really see the sparkles on her glasses and her red lipstick. She looks good--even at Grappa's funeral this past summer.

Snow Day!


View out the front door this am. Picture 2 blue-black crows crows flying up through the middle of this scene ... This also doesn't show the red crab apples peeking through the snow-laden branches. I feel an art quilt coming on!


From the back yard. The Arbor vitae and the Joe Pye Weed are so weighted down with snow that they are bent over the pond.




Snow dingle-berries caked on Maggie's legs. Poor thing. She is not a dog who would have done well in the wild. She loves the snow anyway. She sure makes me happy! ;-)


These are Oliver's new boots. They fit me. I wore them quite comfortably on the dog walk last night. I'll have a new pair of boots when he outgrows this pair. He's only 8 years old!

Oliver gets the day off of school, and I'm also staying home from work due to the snow. Hurray!

Goddess Mother to Little Luka


I'm a Goddess Mother!

On her recent trip to the US in November (She lives in Japan), my sister asked us to be god-parents to her new baby, Luka. At first we were wondering, well, what does that mean? What does she expect of us? We're not hugely religious people. I seldom see my own god-parents. In the end, we concluded that our job is to make this little boy feel special, to be a good influence on him. We can do that.


Here we are at the UU Fellowship in Appleton, with my friend, The Rev. Dottie Mathews who did the dedication/naming ceremony for us. Pictured Back row : me, Christian, Mande (holding Ailin). Front Row : Oliver, Yusuke (holding Luka).


Oliver is also happy about this new role. He was really looking forward to meeting his new little cousin. Look at his eyes sparkle (or is that sparkle from Gramma Pickles in the back row?)

I discovered I like being Auntie better than mother to a little one this age. Luka is a jolly little easy-going boy. Easy to make him giggle and belly-laugh.

CL is the nurturing one--as you can tell from this photo :

Sunday, December 6, 2009

December for the Senses


A warm fire to sit by. CL finally started a fire! Hurray! This turned out to be a great fire picture, too.


More December Reds.
CL made a batch of what we affectionately call "Cranberry Sludge." We make our own cranberry juice out of fresh whole cranberries. It's delicious! It's thicker than juice after we strain it, so we call it sludge (in a good way).

Thursday, November 26, 2009

Happy Thanksgiving




One of my favorite segments from Garrison Keillor's Prairie Home Companion is when Roy Blount, Jr., read a food excerpt from his book Long Time Leaving :Dispatches from Up South. He does impressions of everyone in his family during a big meal. It's hilarious because it reminds me of meals at my Gramma Matucheski's house when I was a kid.

Listen here. the spot is about 23 minutes in.

Sunday, October 25, 2009

The Lodger : Beauty Stays



It's been a cold rainy October. Last Sunday, as we were getting our bikes out to go for a ride, we saw this butterfly near the woodpile, struggling along. He was pretty beat up. Since it was chilly, I moved him into the sun thinking he just needed to warm up a bit, then he'd fly off again. When my husband saw it, he ran back into the house to make some sugar water, thinking it needed sustenance to make the trip to Mexico ... He put out a dish of sugar water for it, and we went on our bike ride (with winter hats and mittens).

When we got back 2 hours later, the little butterfly seemed to be doing better. With a cold night ahead, we brought him into the house, expecting to provide palliative care until he died. So we set up a habitat for him, a box with an open top so he could fly if he wanted to do so. He no longer seems able to fly ...

1 week later, he's still with us, sipping sugar water, crawling on the leaves, crawling on our fingers. Content--or wondering why on earth he's still alive, when a bird should have made a meal of him days ago. CL was explaining to Oliver that the butterfly drinks up the sugar water with his proboscis. So I named him Kiss, because it sounds like the end of probo-scus.

I don't think he'll be making the flight to Mexico this late in the season. We'll help him along as long as he wants to stay with us.

Follow-up note : The little butterfly disappeared on the long Thanksgiving weekend. We went away, and couldn't find him when we got back. I suppose someday we'll find a dry and perfectly preserved Monarch behind a box. He was with us for almost 6 weeks. ;-)

Tuesday, October 20, 2009

Wedded Bliss (or Something ...)



I woke up the other morning thinking about how several of my friends saw themselves (in younger days) as mothers. I can't quite say I had that aspiration, but I did see myself as married ...

Many of the women in my life say they would NOT re-marry if they suddenly found themselves un-attached. They have a variety of reasons --kids, adult children, finances, freedom ... Some people simply had bad first marriages and don't want to be put back into that compromising position again.

Marriage has been pretty good for me and my husband. I would marry him again. And I would probably marry another "right person" again if I were un-attached in future. I like this partnership-thing. I'm a Libra--that's my thang!

So the other morning, I'm lying in bed next to my sweetie thinking these happy marriage thoughts, when he lets out the tail end of yesterday's bacon butter beans ---Rrriiiiippp!

Yes--laughter and bodily functions are indeed part of wedded bliss.

In case you're interested, here are the Lyrics to Greg Brown's Marriage Chant.

Memory Bear for Hospice


This summer, I started volunteering for the local Hospice. Because I work full-time and have a family, I have limited time when I can be available for Hospice patients and their families. Or rather, they tend not to need someone when I'm free to be there (so far). So the Volunteer Coordinator put me to work making a teddy bear out of a lady's clothes. I've been working on it all week so she can see it before she dies. It will be a comfort to her in the time she has left and a comfort to her family after she is gone.

And it makes me feel good to use my time and talents to make such a meaningful difference (however small, however quiet) in their lives. Sigh--I'm getting tears in my eyes just thinking of it now ...

Each stitch is filled with love and prayers for strength and wholeness for this woman and her family. This is a magic memory bear. It is not a toy.



[Sorry--I don't know where the pattern came from. It's hand-drawn ...]

Want to make a difference? Check with your local hospital or cancer center. They often like to give comfort quilts to patients who are under-going cancer treatment. Or soft caps for when someone's hair falls out due to chemotherapy. There are lots of options ...

Nancy Zieman of PBS's Sewing with Nancy and Nancy's Notions has some ideas for Creative Kindness. (She's right here in Wisconsin, so I have to her a nod for this.)

Thursday, October 8, 2009

Marriage Equality



Those of you who know me well, know that this is a struggle near and dear to my heart. Yes, I'm enjoying the benefits of a traditional marriage. So why do I care about this? It IS the Civil Rights struggle of our time. It's about people I care about not being recognized by our society at large for the great significant relationships in their lives.

My dear friend Dottie recently spoke most eloquently about this issue.
Listen to "Domestic Partnerships : An Important Step on the Way to Equality" by Rev. Dottie Matthews. More details about her sermon.

She puts it all into perspective. She knows we're making progress, and that it won't happen overnight. She knows there will be setbacks as there are with all social struggles, but it's still a steady push forward. I just wish marriage equality was already here and available for anyone who wanted it. That really will make for a more stable society.

I'm with you Dottie, Rosie, DMJ. I will stand beside you and work until this is a reality in the US.