Friday, October 31, 2008

Happy All Hallows Eve


as always, click the pic to enlarge

Mark's mom made Alexander's costume for Mark's little brother Kent over 20 years ago. Today is Uncle Kent's birthday! Happy Birthday Uncle Kent!!! Sophie's costume was store bought as I'm just not that good with a sewing machine. The pictures were taken from our trip to Keifer's family farm in Iowa. This is the same pumpkin patch I went to all the years that I was growing up. It's always special to be able to go back there. Have a great Halloween everyone.

A Look Back at Halloweens Past

Wednesday, October 29, 2008

Why It's Important

October is Domestic Violence Awareness Month (DVAM). October is also Down syndrome Awareness Month. Providing Awareness of both DV and Ds is of great importance to me both personally and professionally. Over the month you've read about all kinds of things. Most were happy expressions of joy. Others were not.

Maybe you wondered why I bother posting such depressing statistics. I know that I am blessed to have a wonderful husband and extended family. I've developed some amazing friendships since Sophie entered my world and have grown closer to old friends. My support system is strong. My access to Early Intervention is good. My love for my daughter is deep.

Sadly, not all parents who have children with special needs have as many resources. Many struggle through each day in ways I cannot imagine. Even more tragic is the fact that much of the abuse of children with special needs is sustained by the hand of a parent or caregiver. Imagine, if you will, a home where the mother experiences domestic violence. Imagine then what the life of a child with special needs is like as they witness this abuse or are directly abused. These families are even more isolated and at more risk for serious trauma and injury.

I have also read horrible stories of abuse by the hands of educators or caregivers. Teachers or aids who "teach a little girl a lesson" by slapping her in the face after the child has acted out. Others who have pulled another little girl's hair to see if she likes how it feels. The fact is that there are sick people in this world. We need to be vigilant with all of our kids, but especially our kids with special needs who may be targeted by sickos who see them as particularly vulnerable, unable to articulate their abuse, or fight back.

As I slowly emerge from the beginning of my journey with Sophie, I see more and more how important it is to reach out and help others. It's important to stand up and speak out against cruelty and abuse. In my own small way I have tried to extend a welcome to new parents on downsyn. I joined the Rally for Respect when the Ban the "R" Word Campaign really kicked off. I hope to do more as I gather my strength. Blogging about daily life, normal daily life, filled with highs and lows and plenty of pictures of my family gives others who are brand new or struggling on this path a glimmer of hope that it can and will be ok. Reading others' blogs has given me more perspective, encouragement, knowledge, strength, laughter and tears than I could have ever imagined.

So, as 31 for 21 draws to an exhausting close, I thank all who have participated in sharing their little unique worlds with us all and by doing so, made our worlds a little smaller and more beautiful.

I'll leave you with one last set of stats taken from The ARC:

- 1 in 3 children with disabilities are victims of some form of abuse, sexual abuse, or neglect. (Sullivan & Knutson, 2000).

- Individuals with developmental disabilities are 4 to 10 more times more likely to be victims of a crime than people without disabilities (Sobsey, et al., 1995).

- Children with developmental disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities (Crosse et. al., 1993).

For more information or to get help, please contact:
The National Domestic Violence Hotline at 1-800-799-SAFE
The National Sexual Assault Hotline at 1-800-656-HOPE

Tuesday, October 28, 2008

New Toy

I'm a big fan of Hoops and Yoyo. The other day I picked up a little gadget that I've found to be quite useful already. Have a calm day everyone!
video

Monday, October 27, 2008

Pumpkin Patch

On Sunday we ventured out to the same family owned pumpkin farm that I went to all the years I was growing up. It was very cold but it was the wind that was truly brutal. The hayride wasn't running and we made a quick trip of it.
Like my lil punkins & a kitty?

The zipper on Mark's coat broke and he was quite miserable in the cold wind. Eventually he took Soph to the car while the rest of us, excluding the little ones, went through the haunted house.

Doesn't he look thrilled?

Sunday, October 26, 2008

Happy Birthday Grandma Mary

Though her birthday was earlier last week, today we had a surprise party for my dear Grandma Mary who just turned 39, again. (she never reveals her true age).
video



Hope you had lots of fun today Grandma. We love you beautiful lady!

Brokaw, McCain in My Hometown

Just a weird co-ink-e-dink. I turned on the tv a few minutes ago. We are staying at my sister's place in Waterloo, IA for a few days. Meet the Press came on and they announced that they were live from Waterloo, IA. I thought I was hearing things. Nope, there they are. Tom Brokaw and John McCain discussing poll numbers and election issues somewhere in the same little city I'm in. I wonder what studio exactly they are broadcasting from. KWWL perhaps?

Wonder

Here's an oldie for some of you, but certainly a goodie. This one's for you my dear daughter Sophia Madison. Happy Saturday everyone!




lyrics, Wonder by Natalie Merchant

Doctors have come from distants cities, just to see me
Stand over my bed, disbelieving what they're seeing

They say I must be one of the wonders
Of God's own creation
And as far as they see, they can offer
No explanation
Newspapers ask intimate questions, want confessions
They reach into my head to steal, the glory of my story

Ooo, I believe, fate, fate smiled
And destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She'll make her way, she'll make her way

People see me I'm a challenge to your balance
I'm over your heads how I confound you
And astound you
To know I must be one of the wonders

Ooo, I believe, fate, fate smiled
And destiny laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way, she'll make her way

Friday, October 24, 2008

Palin Speaks About Special Needs

Today Gov. Sarah Palin spoke in Pittsburgh about children and adults with special needs. It's a subject way to close to home not to mention, despite my personal opinions. (Text of the speech here).

An Obama campaign spokesperson responded: "Senator Obama has consistently been clear that he would not increase taxes on families making less than $250,000 a year," spokesman Sean Smith said in a statement. "John McCain's own health care plan would actually cut $1.3 trillion from Medicare and Medicaid that children with disabilities truly depend on, which makes this attack especially hypocritical."

I am blessed with friends who are liberal, conservative, moderate, independent, republican, democrat, pro-choice, and pro-life. We manage to get along quite well, despite some pretty big differences in opinion and political affiliations. So, for the sake of being informed, feel free to read the speech and leave a comment if you wish. Just please be nice if you do.

Thursday, October 23, 2008

The Violence Against Women Act

October is Domestic Violence Awareness Month (DVAM). October is also Down syndrome Awareness Month. Providing Awareness of both DV and Ds is of great importance to me both personally and professionally. Over the next month you'll be reading about all kinds of things. Some will be happy expressions of joy. Others will not.

And now, more information to think about...

Approximately 1,400 women a year – four every day – die in the United States as a result of domestic violence. And 132,000 women report that they have been victims of a rape or attempted rape, and it is estimated that an even greater number have been raped, but do not report it.

Joe Biden wrote and passed the landmark Violence Against Women Act (VAWA) which is the strongest legislation to date that criminalizes domestic violence and other forms of violence against women, provides victims with the support they deserve, and holds batterers accountable. Signed into law in 1994, the bill funds and helps communities, nonprofit organizations, and police combat domestic violence, sexual assault, and stalking.

VAWA establishes a sexual assault services program and provides education grants to prevent domestic violence. Since VAWA was enacted, over 2,500 separate shelters, centers, and outreach offices have been established and the National Domestic Violence Hotline has received over 2 million calls. Shining a spotlight on this violence has resulted both in better supports for victims, and lowering the incident rate of domestic violence by 60%.

What Joe Biden did in writing VAWA, among many things, was to provide funds and expertise for training officers, prosecutors and judges across the country to better work these cases, and provide real help for victims who so desperately need hope. Bravo.

The Violence Against Women Act (VAWA) provides support to victims with disabilities. Although the original version of VAWA did not provide funding for victims with disabilities, the 2000 reauthorization authorized a grant program to provide education and technical assistance to service providers to better meet the needs of disabled victims of violence.

The 2005 reauthorization of VAWA further expanded coverage for disabled victims. The 2005 reauthorization:
· Expanded education, training, and services grant programs.
· Included added construction and personnel costs for shelters that serve disabled victims of domestic violence to the purpose areas that can receive VAWA funding.
· Focused on the development of collaborative relationships between victim service organizations and organizations that serve individuals with disabilities.
· Provided funding for the development of model programs that implement advocacy and intervention services within organizations servicing disabled individuals.

Although the Department of Justice authorized $10 million per year for FY 2007 through FY 2011, only $7.1 million was allocated for protections and services for disabled victims in FY 2007. The Campaign for Funding to End Domestic and Sexual Violence requests $10 million for FY 2008 and subsequent years to be allocated to serve victims with disabilities.

For more information or to get help, please contact:
The National Domestic Violence Hotline at 1-800-799-SAFE
The National Sexual Assault Hotline at 1-800-656-HOPE
Text and Sources: here here here

Wednesday, October 22, 2008

Wordless Wednesday


Veil Lifted

The flu has left the building (I hope, I hope). So far Mark hasn't caught it and I pray it remains that way. By far I had it the worst, but that's ok. It gave Mark a chance to spend some good quality time with the kids. (silver lining folks).

I can't fully explain how differently I feel today. It's not just the flu leaving either, I think. I'm in the middle of week 12 of this pregnancy. By the week's end I'll enter the 2nd trimester. This is typically a milestone that many pregnant women look forward to for a few reasons. First, it means that chances of miscarriage are much lower and second, it often hails the return of energy.

I am so blessed to be carrying Maybe the May Ba-by and I am grateful. This is the first time I've been preggers and still nursing and I'd be a liar if I said it wasn't hard. This isn't the point, however. Today I have something new to celebrate. Today I can eat and keep it down, but most amazingly I have welcomed the return of energy. It's about time as the house is in serious need of cleaning. I'm finding that I can't get it done fast enough. And, I can't stop smiling. Maybe Mark slipped me something?

Lastly I have a good thoughts/prayer request. Mark has a very, very important job interview coming up. As a professor, job searches for Fall 2009 are happening now. He is a visiting prof here and his contract is up in May 09, so getting hired for next year is critical. I won't say where, but beginning this Sunday he will be doing a three day interview for a tenure track position. They don't mess around with these jobs. It would be so good for him and so, so good for our family. If you could think of him this Sun-Tues, we would appreciate it.

I believe the veil has lifted and the light is shining again.

Tuesday, October 21, 2008

A Special Joy: Parenting Magazine

Parenting Magazine has been showcasing galleries of children with Down syndrome on their web site in honor of Down syndrome Awareness Month. I had sent in pictures of Soph forever ago and had given up on them choosing her. I decided to try one more time and sent a different picture and lo and behold, they chose her! Click here to see her national magazine debut! Click here to go to the beginning of the gallery to peruse some of the most beautiful faces you'll ever lay eyes on including many of our new friends.

Monday, October 20, 2008

Bleck

I have a violent disgusting flu. Have I mentioned that I'm preggers and still nursing? This is Not fun. Mark is wonderful. The end.

Sunday, October 19, 2008

SNL, Featuring Sarah Palin

Did you dare miss it last night? What a riot.

Saturday, October 18, 2008

ICE

I don't know if it's an urban legend or not, but that doesn't really matter. I read in an email a while back about an EMT with a good idea. Often times car accident victims have cell phones that they find on the scene. If the victim is unable to communicate, then they can't tell the EMTs who to call, and the EMTs wouldn't know who to dial in the cell phone contact list. I think the solution is kind of neat.

Pick your In Case of Emergency person and list them in your contacts as ICE (then name). For example, when my hubby calls me it comes up ICE, Mark, husband. Hopefully I'll never be in the position to need this, and who knows if the EMTs would have heard of it, but it sure doesn't hurt to give it a try, especially if we spread the word.

Friday, October 17, 2008

Candidates Charity Roast

NEW YORK (AFP) — The pitched battle for the White House briefly made way for good humor and a good cause as Barack Obama and John McCain traded jibes at a black-tie charity roast in New York. For the full length version of McCain and Obama's speeches (and I do recommend watching both), go to YouTube. Here's a little bit of the hilarity to wet your appetite. Folks, we all needed this laugh. Happy Friday everyone.

Thursday, October 16, 2008

Cool Trick

Sophie is seriously double jointed in her thumb. She can nearly touch her wrist with her thumb. This was discovered when dressing her in long sleeved tops. Hold your hand up and see how far you can stretch your thumb back. Mine only goes 90 degrees making a L. Can't get yours too far, huh? She also has a little bend in the top knuckle of her pinkie. I've heard the bent pinkie is a Ds thing, but I don't know about the thumb thing. Cool Tricks!
(as always, click the pic to enlarge)

Wednesday, October 15, 2008

Wordless Wednesday (Buddy Walk, Waterloo, IA)



Thanks for going team, even when we couldn't make it!

Homecoming Queen

My sweet neighbor alerted me to this touching story about a young woman in Texas named Kristin, who happens to have Down syndrome, who was crowned by her fellow students as their homecoming queen. For video of the story, click here and here. Kristen, I wouldn't take the crown off either!

Tuesday, October 14, 2008

New Game, New Word

Sophie has invented a new game where she tosses around her o ball under the dining room table and chases after it. (great for PT) She's usually quite content playing all by herself and doesn't spend too much time demanding to be entertained. She does like to roll the ball back and forth with me though. (reciprocal play = DT) Also, I've discovered that if she's in a tight space, she can in fact crawl vs. scoot on her bottom. So, I'm thinking it's a preference thing that she usually scoots instead of crawling to get around, and not a lack of skill. Still, when we see her take more than a couple 'crawls,' it's cause for cheering. Plus, I swear Sophie is now saying ball (sounds like baa). Have a look if you like. (I'll try to catch her saying ball on video someday)
video

Monday, October 13, 2008

Karyotype

This is Sophie's karyotype, or map of her chromosomes done at a lab in Madison, WI. Look closely (click the image to enlarge) to see a little something extra. Three chromosomes at #21 are clearly visible where typically there are just 2. This is why Down syndrome is also called T21 or trisomy 21. Neat, huh?

I'm Screaming in My Head

First thing this morning as Mark went outside to take Alexander to preschool, he discovered a flat. He got the spare on and we slowly made it to school 40 minutes late. At Sears, warranty in hand as the tires were new in July 2007, they let us know it would be a while. Cathy came to the rescue, again, and carted us home. Mark walked to preschool, lugging the wagon behind him and they made it home an hour later. Then he biked to his office on campus, as per usual.

Alexander did a lot of painting at preschool and was covered from head to toe. He was told to wash up before lunch. While in the bathroom he got the great idea to lock the door and then leave, shutting it behind him. In the next few hours I tried allen wrenches, an eye glass screw driver, a spare corkscrew wire, Swiss Army knife, and coat hanger to pop the lock. Quotes for locksmiths to come out were $70, $55, and $50.

While I was working on the door, Alexander (who's favorite book lately is the Lorax by Dr. Seuss) decided it was time to chop down our tree in the front yard. He grabbed his plastic ax (part of a fire fighter's costume), put on my tennis shoes and headed out front, almost to the street. I got him back in the house to discover Sophie had boot scooted into the kitchen and dumped the cat food and water dishes. I scooped her up and she puked orange yuck on the cream carpet.

Both kids followed me around demanding milk, stories, a nap, etc. They fought and I kept trying to unlock the dang door. The tire was still not fixed 6 hours later. Finally, with the coat hanger and 2 mad kids behind me I popped the lock. However, Soph decided it was too late for her afternoon nap (AKA my nap time) and vetoed the plan. Then she spit up a few more times on the carpet. The tire got 'fixed,' not replaced for $18. I guess our warranty doesn't cover nails.

Sunday, October 12, 2008

Down syndrome and Teeth

Little ones who have Ds may have teeth that erupt much later than what is considered "typical." Others who have Ds get them on a more regular schedule in a more regular order. However, it is not unusual for our kids to get them later, in atypical order, and perhaps shaped a bit differently. We've waited for Sophie's first tooth and finally got it. It's a top left tooth. I noticed that the top right is near bursting through as well. Her Dr. pointed out one just below the surface on the bottom right and says one in the top back left, possibly a molar, is also almost here. I'll have to trust her on that one as I sure can't get a good look/feel back there. That's 15 months with zero teeth and suddenly she'll have 4!

Teething is not fun for anyone, but this most unflattering photo shows just how painful it must be, especially just before the tooth pops through. I can't wait till they break through as it might not hurt as bad. I have to say though, Soph has been a trooper with all of this, as per usual. As always, click on the photo to enlarge if you wish.

It Must Be a Guy Thing

Alexander got a new blue car yesterday, (thanks dear friends for the hand-me-down!) and what's the first thing he must do? Wash it, or as he puts it, water his car.


How much does this kid love this car? Does this face say it all?


He discovered that the back seat holds water, so he decided to take a bath/swim. It must be a guy thing.


video

Saturday, October 11, 2008

Tagged

I've been tagged by Bethany at Dreaming on an Angel ... the task at hand is to divulge six random facts about myself that others might not know.

1. I've worked with child abuse prevention and domestic violence intervention programs since high school. My last position was running a 24 hour a day 7 day a week crisis hotline for DV victims in Madison, WI for 5+ years. I miss the work terribly and will get back to it some day.
2. I served in AmeriCorps as a VISTA (Volunteer in Service to America) for 1 year in my home town of Waterloo, IA and then for more than a year in Washington D.C. as VISTA Leader. Both programs focused on literacy and mentoring programs in schools.
3. When I was little, my 2 front teeth were ripped out of my mouth in a tree swing accident a full year before they should have.
4. The first time I was ever out of the country (besides Tijuana) was to go to Russia with Mark. We stayed in Moscow, St. Petersburg, and Sochi. Prior to our trip we became involved with a fabulous organization called ROOF or Russian Orphan Opportunity Fund. They do not work in adoptions but focus instead on working with children in orphanages. Before this trip we raised enough money to support programs and services for Podol'sk Orphanage. While in Moscow, we visited the main office for ROOF and Podol'sk Orphanage. The hockey jersey Mark is wearing in the last Wordless Wednesday post is from the Podol'sk hockey team. We've stayed in contact with ROOF over the years and done a few more fundraisers. I promise to post more about this amazing group, but until then, please check them out here.
5. I gave birth to Sophie in the back of a moving vehicle. Read about it here.
6. I detest buying postage stamps. Even more so, I detest giving any stamps away, even if the person needing one is willing to pay. They don't just cost 41 cents because you have to drive to get them and go in the P.O. If you have money for the machine, you may get out quickly, but if not, you'll likely be stuck in line for a few stinking 41 cent stamps! I'd buy a bunch, but the prices are raised often enough that I'd just rather not. It's a weird peeve, I know.

So now, here's who I tag: Braska, Cathy, Amy, Renee, Sarah, and Gillian
There is no pressure to play. Frankly I wish these things asked you to pass them on to just 1 or 2 people. You won't hurt my feelings if you choose not to participate, but I'd love to read your responses.

If I tagged you, here are the rules ...
1. Link to the person that tagged you.
2. Post the rules on the blog.
3. Write six random facts about yourself.
4. Tag six people at the end of your post.
5. Let each person know they have been tagged.
6. Let the taggers know when your entry is up.

Friday, October 10, 2008

Blues

I have to put my big girl pants on and make a decision I do not want to make. We were supposed to travel back to my home town of Waterloo, IA this weekend for their Buddy Walk. However, Mark has a brutal cold and a work load of immense proportions. A good drive is only 5 hours without stops for a 3 year old in potty training or a screaming baby. There is really no way that I can do that alone with 2 kids. So, I had to decide to forgo the trip and miss out on seeing Brigette and Josie and my family. Dang double dang. Have fun gang! We'll see you at Christmas ((sob)).

Also, for a week I've been getting a strange error message that my computer battery is not recognizing my power source (or some such), won't be able to charge, and warning me to plug it in. Yet, it has been plugged in and working fine. Last night it actually did stopped charging the battery (it's now down to 84% battery available) though it continues to work as if it is drawing power from the cord, not the battery. I'm getting a new battery and power cord after an online chat with tech support in 2-3 business days (under warranty). In light of this, I may be taking a computer break, checking in only briefly. We'll see what happens. Thanks to Renee for the reminders to back up as I hadn't done that in a while but did when I saw her go through the loss of her irreplaceable files. Computer woes are not fun.

Thursday, October 9, 2008

More on Domestic Violence and Disabilities

October is Domestic Violence Awareness Month (DVAM). October is also Down syndrome Awareness Month. Providing Awareness of both DV and Ds is of great importance to me both personally and professionally. Over the next month you'll be reading about all kinds of things. Some will be happy expressions of joy. Others will not.

And now, more information to think about...

  • Studies estimate that 80% of women with disabilities have been sexually assaulted.
  • One study showed that 47% of sexually abused women with disabilities reported assaults on more than ten occasions.
  • Children with disabilities are more than twice as likely as children without disabilities to be physically abused, and almost twice as likely to be sexually abused.
  • Studies estimate that between 70% and 85% of cases of abuse against adults with disabilities go unreported.
  • One study found that only 5% of reported crimes against people with disabilities were prosecuted, compared to 70% for serious crimes committed against people with no disabilities.

Taken from the National Coalition Against Domestic Violence (NCADV)

For more information or to get help, please contact:
The National Domestic Violence Hotline at 1-800-799-SAFE
The National Sexual Assault Hotline at 1-800-656-HOPE

Wednesday, October 8, 2008

Tuesday, October 7, 2008

3 Check Ups

Today was a busy day at St. Louis Children's Hospital. It started in the Ds clinic where Soph weighed in at 21 and a third pounds, her height is 29 and a third inches, and head circumference is 44.3 cm. Generally, this is in the 75 percentile on the Ds scale. Also, Soph does not have 2 teeth coming in, she has 4!

Then we visited an ENT and Audiologist. Her tympanogram was flat in both ears. "No pressure peak for either ear suggestive of middle ear problems" (or little ear canals that didn't test properly). The hearing test results, " responses to speech and tonal/noise band stimuli suggest essentially normal hearing for at least one ear - with exception of responses seen at a mild loss level at 500hz and speech awareness." The vibrating bone conductor behind her right ear did not induce a response. Translation, she hears pretty good. Come back in a few months for repeat testing to figure this out a bit more.

Last was an appointment with opthomology. It was a follow up appointment from her Strabismus surgery in May. Her eyes look great and are level. Her vision is good with slight astigmatism in both eyes. Come back in a year.

Not a bad day all things considered. Our friends RK and Braska came over for the afternoon and were great company. I got to see Braska sign 'all done' and say book and shoe. RK is gorgeous, as usual. She always looks so nice and there I was in my schlumpadinka pj pants. But hey, at least I showered today.
Lunch with the girls
nap before opthomology
Now I'm up

Monday, October 6, 2008

Renee's Blogoversary and Give Away

Renee, Mom to the Special K's, is having her 1 year blogoversary.

Renee's post:
Today marks one year since I started blogging! In the last year I've written over 500 posts... I've laughed, I've cried, I met some of the most amazing people I've ever met. I've grown as a wife, a mom and a woman of God. Thank you for a fabulous year! I'm looking forward to an even better year to come! NOW for the thing you've all been waiting for: It's a GIVE AWAY!!!! That's right! For MY blogoversary, YOU get the gifts!! So what can you win? I'm glad you asked!! The winner will recieve one of these fabulous gift baskets of their choosing: Click here for the full post and list of prizes.

We're Gonna Be Friends

1 year ago at the Buddy Walk, the parking lot was the hardest. Sophie was 3 months old. Despite having her Ds diagnosis prenatally, we were still new to this world. I had left my career working with victims of domestic violence for many years to move to a new city in a new state, with no friends or family, to stay at home. The move was less than 2 weeks after her discharge from the NICU. Sophie was still recovering from her duodenal atresia surgery that she had on the day she was born. I know now that it took many, many months for her to truly recover and start to really live.

In the parking lot I shook and nearly got sick. Fear ruled the day. What will I see here? People with Down syndrome of all ages and abilities will be everywhere. Will Sophie look like her, talk like him, walk this way when she gets older? Most days you can go about the business of living and (sometimes) forget about Ds. Not here. Not at the Buddy Walk. I was afraid.

1 year later. In the parking lot was a different family from where we once were. In matching TEAM SOPHIE shirts, we headed to the event. Alexander led the cheer, "Teeeeam Sophie!" Over and over again. This was Mark's favorite part of the day. And though I still cried throughout the day, it was for very different reasons.

It was a wonderful event in special thanks to Cathy's crew who really amaze me (and many others from our local DSN). We got there just in time to see the end of the Illinette's performance and get a good spot to see Karen Gaffney speak. Karen is an incredible person. It's not just that she is an accomplished swimmer who happens to have Ds, or that she happens to be a gorgeous blond woman. She started The Karen Gaffney Foundation, a non profit organization that is dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities.

Karen is an inspiration when she speaks. Her speeches aren't all flowery and feel-good either. She has no qualms about challenging her audience. At her reception the night before, she spoke of her desire to get rid of all of the old and inaccurate information that unfortunately still exists about Ds. She spoke of challenging doctors and anyone who put limits on her or anyone who has Ds and instead say "Yes we can."

October is my favorite month. It means Autumn is here. The leaves change, there are football games and a crispness to the air. Halloween is celebrated all month at my house. Mostly it reminds me of the start of the school year. Karen thanked everyone who came to walk that day. She thanked them for being a buddy. Then she challenged us. (paraphrased) It's not enough to be a friend for one gorgeous day in October. Just like you, we want the same things. We want to be included. We want friends, everyday. We are more alike than different, she said. Our eyes or the shapes of our bodies may be different, we may walk differently or talk differently, but it is who we are on the inside that matters.

She spoke of her experiences in school. Sitting down at a table in the cafeteria only to have the other kids get up and move. Longing for a smile when she looked up but seeing the other person look away instead. She said that it takes courage to reach out and befriend a person with Ds or another disability. She asked us to not give up if we reach out and don't get through the first or second time. The person may be so surprised that they might not know how to reach back, but keep trying.

School. Friends. Fall. Acceptance. I cannot know what school will be like for Sophie, but I do know my daughter. I know she draws people to her with her personality. And I hope. Hope ruled the day this year.

And to Liz, Austin, Emma, Grandma Mary and our new buddy Aida (a beautiful 17 year old young woman who is friends with and a neighbor to my sister, who fell in love with Sophie through Liz and this blog - who ASKED to come and walk with us this weekend and again in Waterloo, IA next weekend) I THANK YOU!

1 last thing, a glint of white is beginning to poke through on the upper right of Soph's gums this morning. 15 months with no teeth and now we are getting 2!

Enjoy your day and the montage.
video

Sunday, October 5, 2008

Candidates' Positions on Disability Issues

The following made for an interesting read this morning. This side-by-side comparison of the candidates' positions on disability-related issues is based on information found on the candidates' Web sites, the candidates' Senatorial Web sites and supplemented by other sources. OLRS neither supports nor opposes any political party or candidate for office. Information provided on this page is strictly for educational purposes only. Click here for 2008 Presidential Candidate Positions on Disability-related Issues Prepared by the Ohio Legal Rights Service, September 2008.

Saturday, October 4, 2008

It's a Beautiful Day for a Walk

Round 1 Buddy Walk photos from today! More to come.
As always you can click on each picture to enlarge it. Our team shirts turned out great and the day was a success! Now I need to go spend this time with my family that travelled so far to walk with us.


Friday, October 3, 2008

A Very BIG Day

  • This morning was set up for our Buddy Walk tomorrow.
  • Then I had my first ultrasound with Maybe the May Ba-by. There are a few less maybe-s now. Maybe's due date is what I've claimed, early-mid May. Maybe is only 1 baby, not the twins that Mark and Liz have been insisting we're having. Yet, we're still left wondering, maybe it's a boy but maybe it's a girl. Until December if the baby cooperates and reveals his/her sex, we'll call him/her Maybe the May Ba-by. Stop laughing.

  • Then we had a reception for our celebrity Buddy Walk speaker Karen Gaffney. She gave our local DSN a moving and inspiring speech that left me in tears. She was gracious with her time giving autographs and taking photos. More on Karen when I am not so exhausted, but be sure to check out her website.





  • Then, my sister Liz, her 2 kids, Grandma Mary, and Aida arrived and the party began.
  • Tomorrow is our Buddy Walk and I'm already beyond excited/exhausted/thrilled.
  • Oh, and now that Sophie is 15 months old, while Karen was speaking I discovered that little Sugar Bear/Stinkerbell has finally cut her first tooth and it's in the top front! Whoo-who!
BIG DAY

Thursday, October 2, 2008

TEAM SOPHIE, Buddy Walk

This Saturday is our community's 4th Buddy Walk. Over the last thirteen years, the Buddy Walk™ has become the premier advocacy event for Down syndrome and has become a major platform for inclusion in communities across the country. Below is the blue and yellow sunburst logo from the National Down Syndrome Society.

Click here to watch a few short PSAs featuring John C. & Max McGinley, Chris Burke, Albert Pujols, Meredith Vieira, and Sara Wolff.

We are blessed to have my sister Liz, her two children Austin and Emma, my grandma Mary, and new friend Aida travel from my home state of Iowa to walk with TEAM SOPHIE. Then, next weekend our family will be travelling back to my hometown of Waterloo, IA to participate in their Buddy Walk where we will be joined by even more family members. This year we had team shirts made and I will be sure to post pictures. You all are cordially invited to walk with us this year at either Buddy Walk. If you cannot make it to either of our Buddy Walks but would like to participate, please click here to find a Buddy Walk near you.

If you feel so moved, we would be happy to accept a donation made to TEAM SOPHIE. Donations go to support both local programs and services as well as the NDSS. Click our team logo below or on the sidebar to go to Sophie's page.

Wednesday, October 1, 2008

Awareness Month for Domestic Violence & Down syndrome

October is Domestic Violence Awareness Month (DVAM).

October is also Down syndrome Awareness Month. In honor of this I have taken the 31 for 21 challenge. This is a challenge to post every day in October for Ds or Trisomy 21. Although 1 post per day is the challenge, each post does not necessarily have to be about Ds. Click on the Get it Down 31 for 21 button on the sidebar to find other bloggers taking the challenge.

Providing Awareness of both DV and Ds is of great importance to me both personally and professionally. Over the next month you'll be reading about all kinds of things. Some will be happy expressions of joy. Others will not.

In honor of both DV and Ds, my first post is about Domestic Violence and women with disabilities.

Taken from the National Coalition Against Domestic Violence (NCADV) here are a few facts.

"Women with developmental disabilities have among the highest rates of physical, sexual, and emotional violence perpetrated by intimate partners and family members. Individuals with disabilities are at a greater risk of severe physical and sexual violence than people without disabilities. Many people with disabilities who are victims of violence experience multiple assaults. Domestic abuse victims with disabilities are often more dependent on their caretakers than victims without disabilities, and face many barriers to reporting abuse and seeking services. Victms who do report abuse or seek services often do not find adequate help, since many programs that serve DV victims are not equipped or trained to offer proper care to disabled victims."
Women with disabilities are three times more likely to be sexually assaulted than women without disabilities.

For more information or to get help, call the National Domestic Violence Hotline at 1-800-799-SAFE. The National Sexual Assault Hotline 1-800-656-HOPE.