Tuesday, March 31, 2009

Did You Take the R-Word Pledge?


Be a fan of Sophie. Be a fan of dignity and respect. Take the pledge and Spread the Word to End the R-Word on 3.31.09. http://www.r-word.org/

Sunday, March 29, 2009

The Power of Words, Trillium Project

We are on a mission to make our world more accepting, inclusive, and respectful for all people, particularly those with developmental disabilities. On 3.31.09 we will participate in a national call to action with the Spread the Word Campaign. Words have power. In this case, the r-word has the power to hurt, to devalue, to discriminate. It's a tall order, but one that we WILL get done.

I had the privilege of participating in another activity recently. A very small group of incredibly strong, beautiful, and smart women gathered together over food, wine, whine, conversation, laughter and tears. Before the evening, I knew just one of the women. By the end I had 4 new friends.

Our small group is participating in a fundraiser for Larkin's Place, a multi-generational all-inclusive play & community center-open to all members of our community which has been dreamed up by my friend Amy. The fundraiser is the Trillium Project created by artist Suzanne Keith Loechl. Trillium is dedicated to raising awareness and empowering those facing extraordinary life challenges by expressing their words and stories through the creation of inspired art.

The link between the women there that night was that we are artists and mothers of daughters with special needs. Each need is different, but we share a common bond. After introductions and food we sat around the table, where many powerful things happen amongst women, to share our stories. Suzanne's was of her journey to create this project after her dear friend began battling breast cancer. We shared, we understood, we connected. I'm still processing it all.

This fundraiser for LP is about creative expression through the positive power and flow of words into art. Suzanne takes small tiles and paints them. Words are then written over the painted surface. They can be poems, one line repeated, or anything to tell our stories. After Suzanne protects the words with gloss, they are cut into small pendants and turned into necklaces. (click here) Each pendant carries a small portion of our story that can be shared by many and I promise you, they are beautiful.

The pendants are made from slate. It is a metamorphic rock which is the result of the transformation of an existing rock in a process called metamorphism, which means "change in form." It is cool on your skin despite being born of volcanic lava or clay mixed with ash. The substance is strong, has some weight to it, and reminds me of chalk boards of my childhood where so much learning took place. These touchstones are worn in solidarity as we carry a small part of each other's journey.

By evening's end I felt blessed and recharged in a way I've not felt for a long time. We took our tiles home and my mind began churning. On the 1st tile I chose to write a poem by Lord Byron. Typically it conjures up romantic love, but I've reclaimed it for my daughter. It speaks to me of finding beauty in places you might not think of, such as in darkness or night. Beauty, starry skies, eyes (the windows to our soul), soft, calm, eloquent, smiles, goodness, a mind at peace, heart, love, innocent. All positive words of power. On the 2nd tile I told Sophie's story through the repeated use of I am. On the 3rd tile are lyrics from the Natalie Merchant song, Wonder which has touched and comforted me greatly. I could have filled a thousand tiles and still had more to say. By Mother's Day they should be available. 100% of proceeds go to Larkin's Place.
(click to enlarge my uncut, unglossed tiles)


Tuesday, March 24, 2009

Local TV Coverage, End the Word Campaign

Sophie and I did an interview tonight with WCIA Channel 3 on our local efforts to Spread the Word to End the Word on 3.31.09. Mark is slated to do an interview with the Daily Illini newspaper and our friend Amy is doing another TV interview the morning of our event. I'll post all articles and links as they become available and as more interviews are scheduled.

We have been so blessed by many in our community who have embraced this call to end the r-word. So many have stepped up to help and the movement has spread near and far. Thank you dear friends. We ARE making an impact.

Most of the interview didn't survive the cutting room floor to make it into the 42 second spot. I talked about the history of the r-word, how the Spread the Word movement came to be, the DSN and Epsilon Delta event at the Illini Union, and Junior League's work to get tables in each of the junior and high schools on 3.31.09. I spoke of the struggles to be included and accepted in society when you have a developmental disability and the pain that this word can inflict on people with disabilities and those of us who love them. Thankfully, they list many of the details here on their website.

You'll see in the clip that the anchor says "Her mom says people can be ignorant and describe her little girl with words that hurt." What I remember talking about was that people who use the r-word as slang are often ignorant of the history of the word and the impact it can have and that we hope to educate others on the power of words. My comment about Sophie struggling was a about how she already struggles with reaching her milestones while living in a society where she has to fight for acceptance and inclusion and that we hope to educate others on valuing all people regardless of ability.

Interviews can be a blur and the final product after editing is always fun to see. Our reporter Jenny Gastwirth was really nice and a joy to work with. They did a good job and I'm grateful that we got coverage already, as the event isn't until next week.

Click here for the story. Try adjusting the bandwidth if you can't get the video to play.

Saturday, March 21, 2009

World Down Syndrome Day


Today is the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down Syndrome. Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown. Hence - the 3rd month (March) and 21st day, T21.
This is a copy of Sophie's karyotype (click to enlarge) that shows the 3 copies of chromosome 21.

In honor of my gorgeous girl, we celebrate this day. I'll refer new comers to my first blog post, which is Sophie's birth story (in the back of a moving vehicle).

Here's her first professional photo. Her daddy holds her, just like the cover of the amazing book Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives. We like to think of it as picture of God giving us a great and wonderful gift of our own.

DOWN SYNDROME CREED (author unknown)

My face may be different,
but my feelings the same.
I laugh and cry
and I take pride in my gains.
I was sent here among you
to teach you to love
as God in the heavens
looks down from above.
To Him I am no different,
His love knows no bounds;
it's those here among you.
in cities and towns
that judge me by standards
that man has imparted,
but this family I've chosen
will help me get started.
For I'm one of the children,
so special and few,
that came here to learn
the same lessons as you.
That love is acceptance,
it comes from the heart;
we all have the same purpose,
though not from the start.
The Lord gave me life
to live and embrace,
and I'll do it as you do,
but at my own pace.

Friday, March 20, 2009

Dear Mr. President





When asked about the remark, the White House said the president did not intend to offend.

"The president made an off-hand remark making fun of his own bowling that was in no way intended to disparage the Special Olympics," White House deputy press secretary Bill Burton said. "He thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world."

On his way back to Washington on Air Force One, Obama called the chairman of the Special Olympics, Tim Shriver, to say he was sorry — even before the taped program aired late Thursday night.

click the image below for the official statement from the Special Olympics


Dear Mr. President,

I believe that sometimes the content of one's character can be revealed not in the mistakes we make, but how we go about making amends. I'm watching very closely to see what you do beyond the White House statement and phone call apology to Mr. Shriver.

You picked an interesting time to make such a cruel comparison on national television. In less than two weeks, people from across our nation are coming together to call for respect, acceptance, and dignity for all people regardless of ability. As our celebrity spokesman (actor John C. McGinley) put it so well, "it defies rational thought as to why you would pick on that group."

The 'Spread the Word to End the Word 3.31.09' campaign, which is being led by Special Olympics, has focused on the derogatory use of the words retard or retarded (the R-word), but at its core, this movement is so much more. It is our great hope that we can educate our fellow citizens, not just about the r-word but to go further to dispel the negative stereotypes associated with people with disabilities. When we do this, we hope to change minds about the value of the lives of our children, loved ones, and friends who have special needs. In doing so, there won't be a need for a new word to rise up and take the place of the r-word.

Mr. President, I have no doubt that you did not intend to hurt me or insult my daughter who has special needs with your thoughtless remark. That indeed, is exactly what you did. You did not call yourself the r-word, but your comment had the same meaning. This off-hand remark gave our nation permission to put themselves or others down by making comparisons to those with disabilities. This is unacceptable.

Ours is a community that has done nothing to you, who struggle every day to be included and to prove their value. Last night the leader of our nation used our community as the butt of a self-deprecating joke. It is my job, my duty as a mother to defend and protect my child against such cruel behavior just as it is your job to lead. So lead Mr. President.

On 3.31.09, in your home state, a state ranked dead last for funding for services for people with developmental disabilities, we will be gathering in numbers to Spread the Word. Please consider this a personal invitation to join us at our event. Click the button below for more details.

Thursday, March 19, 2009

Stop the Press!

This morning we met with two of our new wonderful Respite workers. While they were here, Sophie decided it was time to take her first assisted steps!!!!!!!!!!! This was a long time coming folks. Here she is walking with Miss A. while her mommy filmed and tried not to bawl my head off.
video
Here's the superstar at playgroup yesterday.

Monday, March 16, 2009

Week 33

Belly Shot, Week 33

At week 33, Helana weighs approximately four pounds five ounces and measures 15 3/4 inches crown to rump. She regularly has hiccups, and if I use my belly as a place mat or cup holder, she can bump it pretty good. Braxton & Hicks make regular appearances.

Mark and I have hired doulas for each of our kid's births. With Alexander, we ended up with two doulas as labor was nearly 30 hours, with a few complications. Sophie had a doula too, though both she and Mark missed the actual birth as they raced behind the ambulance to the hospital. Still, Cary stayed with me for the whole day and was a great help. We hired a doula for Helena's birth and recommend using them if there is any way that you can swing it. (prices vary but in my experience haven't been more than $400, some hospitals have them on staff, some have sliding fees, and some insurance companies help with the cost)

A birth doula is a person trained and experienced in childbirth who provides continuous physical, emotional and informational support to the mother before, during and just after childbirth. Trish is going to be with us for this round and we are thrilled! She comes to us as a certified DONA (Doulas of North America), MSW, LCSW and was a child and family therapist for 15 years before becoming a doula. She has attended to over 200 births.

Doulas do not do the medical side of childbirth. Their focus is on the comfort of the mom. They can run interference between staff and parents and help translate any confusing decisions or terms that may come up. Their bag of tricks to make the birth the best experience it can be is bottomless. They are trained to recognize the stages of labor and know quite a bit about positioning and massage during labor and delivery. A doula worth her salt will assist in all births, whether it be cesarean, natural, with or without drugs. Mark is an even bigger advocate for using doulas than I am. He can focus on being my husband and not worry so much about the rest of it because we have a trained partner to help guide our way.

Our experiences with childbirth have been traumatic. Alexander's birth had complications, took a very long time, and finally happened with the assistance of a suction cup on his large noggin (9 lb baby that he was). With Sophie, we were sent home twice after labor slowed down (it went on for a week without ever stopping, just stalling). Our instructions for return were to wait until contractions hit the pattern of 4 or 5/1/1 (4-5 minutes apart, lasting a minute or more, for an hour). We never got to that pattern. After we made the decision to go to the hospital, I immediately went into transition and she was half way born in our van, the rest in the ambulance that picked us up on the way. I prefer to labor at home for as long as I can with Helena, but am grateful to have a doula help us figure out when we need to hit the road to avoid a repeat performance.

Besides being a comfort to parents, studies show many benefits to having a doula present:
  • tends to result in shorter labors with fewer complications
  • reduces negative feelings about one’s childbirth experience
  • reduces the need for pitocin (a labor-inducing drug), forceps or vacuum extraction
  • reduces the requests for pain medication and epidurals, as well as the incidence of cesareans
  • women report greater satisfaction with their birth experience, make more positive assessments of their babies, and less postpartum depression
  • babies have shorter hospital stays with fewer admissions to special care nurseries, breastfeed more easily and have more affectionate mothers in the postpartum period

WARNING:

Bare belly shots below complete with unedited stretch marks and gall bladder surgery scars. Can't handle it? X out now.

Week 33


Friday, March 13, 2009

Don't See "Miss March"

Not like you would have seen it anyway. Here is a small excerpt from an interview in the Chicago Tribune on March 11th. (reporter, Robert K. Elder interviewing Craig Robinson)

Q In the script, the word "retard" is used over and over. The comedy "Tropic Thunder" received a great deal of criticism for using the same word. Was there any concern over how this might be received?

A I've heard nothing. There could very well be something, but I haven't heard anything. We shot it probably the same time as ["Tropic Thunder"]. I wasn't in the editing room. You'll have to talk to the guys who made those decisions.

Q But, as a comedian, is that just a toxic word now?

A It does seem to be. You can see it from a parent's point of view. But the way they use it in the movie is funny. It's silly. It's not going out to hurt anybody. It's definitely not coming from an evil place; it's just coming from the way people talk.

Funny? Here's ONE example of what's "funny" about the "R" Word in this movie.

The best friend is Eugene (Cregger), a high-school student who doubles as an abstinence lecturer. Along with his devout girlfriend Cindi (Raquel Alessi), Eugene recounts how his brother had sex and then had "retard babies" that later went on to burn down his house and kill his mother. The tirade is accompanied by projections of Syphilis infected no-no areas. (reported here)

Special Olympics has more to say, including contact information. (click here) Also read more at Patricia E. Bauer's site (click here)

Thursday, March 12, 2009

Song that makes me cry

Tonight's episode of Grey's Anatomy is called "I'll follow you into the dark," which of course makes me think of the Death Cab for Cutie song of the same name. It's a song that usually makes me cry. Good thing I can blame pregnancy hormones.
If the embedded video is acting wonky, go here: http://www.youtube.com/watch?v=xbqtuFemMOE

Wednesday, March 11, 2009

Sophie's Ear Tubes


It's been a full week since our trip to St. Louis Children's Hospital where Sophie got tubes in her ears. Grandma Paula hung out at home so that Alexander could go to preschool. He did just fine, but I had a harder time. It was my first night away from him.

We got in around 9pm and settled into our hotel. Sophie slept most of the way there, so she ended up staying awake until 11:15. That was OK because I could give her food until midnight and then she needed to fast.

SLCH is beyond good at what they do. Click here for a previous experience describing the care you receive there. We arrived at Same Day Surgery by 7:15 and by 8:34 she was headed back to surgery (scheduled for 8:30). I love it when a procedure happens on time, especially when fasting is required.

It was really fast and she was done 30 minutes later. Super cranky and out of it, we tried to comfort her and get her to drink apple juice. More quickly than I imagined possible, we were leaving. She did vomit up snotty juice as soon as we left and were in the car, but after that, she was better. It took a while to fully come out of sedation.

We met our very good girlfriends at a mall. (Why hang at the hospital when we can shop?) Plus, they had a Stride Rite and our only local store that carried them closed. Sophie needs a 4XW, which you just can't get anywhere. RK is a super mom, looking gorgeous, lugging 2 around as if she's done this forever, and does well multi-tasking. Click here for their pics of our meet up. We were so happy to finally meet Kinlee and see our old pals.

Mark always notices the quirkiest things. This sign at Dillards disturbed him, so he snapped a shot.

The next day Soph needed Tylenol, but has been doing great with zero drainage. We go back for a follow up and appointment with audiology in 4-8 weeks (which we will try to coordinate with her follow up eye appointment). So far, so good.

Sunday, March 8, 2009

Weeks 31 & 32

Today is day 1 of week 32. That's 7 months down and 2 to go! I had zero time to post about this last week, so today it's a 2fer.

Last Week (31), Belly Shot

Last week was a busy week. Over lunch, Mark casually asked, "What do you think Helena's eyes will look like?" I said that they would probably look just like her big brother and sister's eyes. After all Alexander's eyes just turned from blue to green in the past few months. (pause) "Wait. Did you say Helena?" So there you have it folks. We can retire Maybe the May baby and give her an honest to goodness name (I've been calling her that in my head for a while now). Helena is pronounced Hel-LAY-nuh, not Helen-uh. We are not certain of the spelling and have no clue about her middle name. As always, we reserve the right to pick a completely different name at any point.

At 31 weeks Helena may track moving objects with her eyes. When she blinks, the eye's iris responds to light and dark. Her lungs and digestive track are nearly mature, although the last few weeks in-utero are still important for lung development. She was around 14-1/2 inches head-to-toe, and weighed nearly three pounds, five ounces.

In summary, over the last 2 weeks I've busted a tooth (not by opening a beer bottle, but on a piece of hard rice, had a prenatal where I weighed in at 1.8 lbs. more than last month thanks to delicious Butterfinger ice cream - yumm, (I think I gained it all in my face) got a new hair cut, had an allergic reaction to Thai food, hired a doula (more on that later), and named the baby.

Belly Shot, Week 32

This week, (32) Helena is now 38 centimeters crown-to-rump, or 15-1/4 inches long, and weighs three pounds, twelve ounces. She can move her head to the side, but now that she is taking up much of the available space, her movement will slowly decrease.

WARNING:

Bare belly shots below complete with unedited stretch marks and gall bladder surgery scars. Can't handle it? X out now.

Week 31

Week 32

Saturday, March 7, 2009

Spa Day, New Me

At our Buddy Walk last October, I won the mama of raffle gift baskets. It included tons of great prizes like an hour of Merry Maids services, pizza, ice cream cakes, scrapbooking stuff, ect. The best one has to be the gift certificate to a spa. I've been saving it and yesterday I cashed it in. Mark took the kids all afternoon (including taking them both to Sophie's PT). He also threw in an hour massage (THANK YOU HUBS)!

(As always, click on the pics to enlarge)
BEFORE

CHANGING ROOM FOR MASSAGE (yes, that's a robe)

12 INCHES CUT OFF AND DONATED TO LOCKS OF LOVE

I've wanted to do this for a long time

After my hair appointment, I got a makeup lesson and application. They used Bare Minerals, (which I didn't know ahead of time). Since this is what I've been using for a while, that was an extra treat. I went for the more dramatic smokey eyes for a dramatic change.

NEXT, PEDICURE (My 1st ever)

It was a whole treatment; soaking, exfoliating, foot and leg massage while in a massage chair, and making my preggo feet look good.
OPI color Boris and Natasha

AFTER
Mark and the kids picked me up and we drove through campus to witness the spectacle that is Unofficial and to pick up some Thai food for dinner. I thought I'd try something new and asked for a recommendation. It wasn't anything exotic, but it was tasty. However, within 30 minutes I had my first allergic reaction to food. I broke out into bright red splotches and very itchy bumps from my face, all down my back and chest. Benadryl, hydrocortisone, Tylenol, going to bed early and a phone call to the night OB nurse helped. Things are much better today.

I wasn't able to recreate the hair style exactly (I'm much more poofy today, but then I don't have the patience for spending much time on hair. Still it's a dramatic change and oh so cute. When I got picked up yesterday, Alexander said excitedly, "Oh Mom. Your hair is beautiful!" That's all I needed to hear.

John C. McGinley (on Bonnie Hunt's Show)

I was so bummed that I missed JCM speaking about this. Someone on Facebook wrote to me and told me they found my blog through the Bonnie Hunt Show website after his appearance. I don't know if it's true as her site now links to SO, but that could help to explain why I got 2,290 hits last Monday. Thankfully this little family blog is back down to more manageable numbers.


Here is the apology JCM refers to in the above clip. Who would have ever thought I'd be posting about Bill? Whether or not you think it's a sincere apology, it is an apology and I'm sure he gets complaints every day. I'm happy that he did this.

Here's a poster created by an intern in Missouri. You can print it out on 8.5 x 11 or 11 x 14 paper and post at your schools. (click the image to enlarge it)

Thursday, March 5, 2009

New Home Site, Spread the Word to End the Word


email response RE: Spread the Word to End the Word

date Thu, Mar 5, 2009 at 7:19 PM
subject End the R-Word Day!

Hey everybody!
We are so excited at the unbelievable response we have received in anticipation for End the R-Word Day on 3.31.09! We have been inundated by hundreds of emails such as yours by people across the country filled with enthusiasm and support. However, this has also left us unable to respond to each individual email so we also want to apologize to those who have been waiting several days for a response. We are hard at work organizing a way that everyone can get involved and buy t-shirts, posters, fliers, stickers and more.

So, in response to all your requests to buy t-shirts and get involved, we're going to ask that you give us just a bit more time to make arrangements so that everyone can make a difference. Here's the website that's going to serve as our home base for this event so please check this site periodically for more information. http://www.specialolympics.org/03-31-09_spread_the_word.aspx All our the supplies and information that you will need will be available in the next week or so.

Thanks again for all your support and enthusiasm.

Tim and Soeren
Co-Student Coordinators, End the R-Word Day 3.31.09
View previous posts by clicking HERE and HERE
UPDATE: On the new SO site: http://www.specialolympics.org/03-31-09_spread_the_word.aspx (which should be checked regularly), please check out the link on the right hand side that says "Spread the Word Resources" where you will find a toolkit for all the materials and ideas you may need for your local event.
T-shirts and buttons are now available to order on the Special Olympics site: http://www.specialolympics.org/03-31-09_spread_the_word.aspx (on the right, click on Spread the Word Resources and scroll all the way down and click on t shirt and button order form). The direct link is: http://www.specialolympics.org/uploadedFiles/Spread%20the%20Word%20to%20End%20the%20Word%20Order%20Form.pdf

*Please note, orders must be received by March 16 in order to guarantee arrival by March 30. Orders received on March 17 will incur expedited shipping charges. Orders received on March 18 or later cannot be guaranteed to arrive by March 30.**All prices include a donation to Special Olympics. Thank you!

Tuesday, March 3, 2009

Tubes

So, we're chillin in the hotel in St. Louis. Early tomorrow morning we check in to SLCH so that Sophie can get the first set of tubes in her ears. I've added twitter back to my sidebar, but as this is such a quick procedure that I may not have time to add anything. Afterwards I get to gobble up the 3 week old Kinlee! (oh, and see her big sis and mommy). I can smell the sweet new baby smells already!

On another note, after being on the waiting list for more than a year, we are going to receive Respite! That's 15 hours a month (40 hours quarterly) of help watching Miss Soph so that I can get housework done, run errands, or (gasp) get out of the house!!! Our regular sitters are under 18, so we'll probably use some of the respite workers that DSC already works with (many of whom are special education students). Our intake meeting is this week and then we're good to go. This is a real blessing for our little family.

Lastly, the elevator in our hotel has a button that simply says, "earthquake." hmmm? Do I really have the power to cause an earthquake simply by pushing that button?

Sunday, March 1, 2009

Spread the Word to End the Word 3.31.09


Thank you for your interest in spreading the word. Special Olympics has a new site dedicated to Spread the Word (click here) Please visit there often as they are adding information regularly. Make sure to click on the right hand side where it says "Spread the Word Resources" where you will find a wealth of information, including a toolkit with everything you need.

WHAT IS END THE R-WORD DAY?
End the R-Word Day is a day to collect pledges to acknowledge the hurtful nature of the words "retard(ed)" and to end the casual and pejorative uses of the word.

"This is by no means an effort to ban a word legally but rather by way of societal consensus. That is, we are trying to educate people about the hurtful consequences of the R-word and asking that people, once informed, CHOOSE not to use it. We are not language police. We are educators. After you learn about the effects that the R-word has on people with disabilities and their families, I hope that you will remove it from your vocabulary. In the end, that is all I can ask."
--Soeren Palumbo

WHEN IS END THE R-WORD DAY?
3.31.09

HOW CAN I BE INVOLVED WITH END THE R-WORD DAY?

  • Champaign County has planned an event. Click HERE for more details. Facebook users can do a search for this local event: Champaign County End the Word 3.31.09 (this is listed as an event) RSVP and check that link for updates.
  • The Special Olympics site has many great event ideas in their "Spread the Word Resources" page. (click here)
  • Take the pledge at www.r-word.org
  • For the national page, Facebook users can search for 'Campaign to Ban "R" Word' (this is listed as a cause) and you can also search for 'End the R-Word Day 3.31.09' (this is listed as an event). You can join/RSVP and then keep checking those links for updates.

All of us have a role to play in making the world a more accepting place for people with intellectual disabilities.

Take a day to use more accepting language.
Take a day tell your friends to do the same.
Take a day to embrace the humanity of all people.
Take a day to end the R-word.
Spread the Word to End the Word.

See related posts on this blog by clicking HERE, HERE, HERE, HERE, and HERE Our first tv spot for the local event: HERE

T-shirts and buttons are available to order on the Special Olympics site (click here)
*Please note, t-shirt and button orders NEEDED TO BE RECEIVED BY MARCH 16 in order to guarantee arrival by March 30. Orders received on March 17 will incur expedited shipping charges. Orders received on March 18 or later cannot be guaranteed to arrive by March 30.**All prices include a donation to Special Olympics. Thank you!