Saturday, October 31, 2009
Friday, October 30, 2009
Domestic Violence, the Original Pandemic
October is Domestic Violence Awareness Month. In my former life, before staying home with the kids, I coordinated the 24 hour crisis line at Domestic Abuse Intervention Services (DAIS) in Dane County, WI. It's a hard job and even when you leave the field, you never leave the work behind. It stays with you, forever changing you.
The following video is a story that aired in Madison, WI, but it could have been told in any town. Leigh Mills and my friend Shannon Barry do an excellent job covering the domestic murder of Francie Weber by her husband who committed suicide. I cannot even imagine how Francie's niece Letitia got through this interview or how her children get through each day. The story in itself is not unique, but therein lies the problem. It's happening EVERY DAY in this country and across our world.
I could go on and on about this subject, about how you know or perhaps are a victim or survivor of domestic violence, or about how serious and wide spread this is. DV can be physical, sexual, verbal, emotional, or financial, and it is about power and control and entitlement. We as a community must stand up and hold abusers accountable. I could talk about why it is NEVER the victim's fault and that there are many legitimate reasons for staying in an abusive relationship. I could tell you that DV victims (and their kids) are at far greater risk of being seriously injured or killed by the abuser once they separate from them and even years after leaving. Instead I'll just ask that you take a couple of minutes to watch the story as they all did a phenomenal job portraying the reality that is domestic violence.
If the video doesn't work, click HERE.
Powerful, wasn't it? DV advocacy by itself is very important to me, but sadly I've been introduced to another layer and that is DV among my new community of families who have a child with special needs. This, my friends is something that I rarely hear discussed.
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.
What can be done? Volunteer or donate money or needed items to your local DV program. Join online forums for special needs and offer your support. downsyn for families and friends of a loved one with Ds is my favorite forum. Be a friend and listen, keeping your eyes and ears open.
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
Thursday, October 29, 2009
My Hubby - My Hero
Nobody works harder than Mark. He's been lucky enough to find a career where his skills and passion collide. This man is a fabulous professor. He has been working as a visiting professor for a couple of years and has been simultaneously on the market for a tenure track job. His area is Russia and Eastern Europe in political science. He also teaches international relations and comparative politics. If you have any ins, please send me a message, as the job market has been brutal, to put it mildly. His website is HERE. Check it out and you too will see how dedicated he is to his field.
Mark's first book The Political Power of Bad Ideas (cover art by his brother Dan) is being published by Oxford University Press and is due out in a few months. You can take a peek and pre-order HERE or HERE. He has a contract with the New York Times for an op ed (date TBD) and a couple new articles coming out soon in various journals. (yes, I am a proud wifey)
The thing is, it's not just me, his mom, and his kids that think so highly of this man. His students love him, and they should. Have you ever heard of a professor staying up regularly till 4 am to hold online review sessions before tests? Bending over backwards for every student and honestly wanting each and every one of them to be interested and succeed?
At our Buddy Walk this Saturday, our opening remarks were by by Mary Beth Versaci, whose little sister Patti has Down syndrome. You may remember her as the university student columnist for the Daily Illini who wrote THIS piece about some local nastiness. She also happens to be a student of Mark's and she also was involved with our Spread the Word to End the Word 3.31.09 event on campus. With her permission, I'd like to share a little of the speech that kicked off our Buddy Walk, because besides being an amazing professor, husband, and dad, this man is Sophie's biggest advocate.
"Last semester, I took the class Introduction to Political Science taught by a professor who is actually here today, Professor Mark S. I believe it was in the first class after we had watched the Presidential Inauguration (because it happened to be that same day) that Prof. S. introduced himself and talked about his family, including his daughter with Down syndrome, and then went on to talk about the r-word. He told a story where he was walking with his family down Green Street in campus town and I think it may have actually been after the Buddy Walk or some sort of event for Down syndrome awareness, and he heard a group of college students throwing the r-word around like it was no big deal. I remember distinctly that he described hearing the r-word as being like a dagger, and not only was that the first time that I heard someone else talk about how much they hated the r-word, but he also described exactly how it felt because as I mentioned earlier, in my own mind, I had always described hearing the r-word as feeling like I was being stabbed. And I just want to say thank you, Prof. S., so much for using your position as a professor, where you have the opportunity to talk to so many students everyday, to speak about the hurtful use of the r-word, and I also want to let you know that I know for a fact it makes a difference. One of my friends who was in the class with me actually stopped using the r-word, and not only that, but he also helped out on the Spread the Word to End the Word Day, a day dedicated to encouraging people to stop using the r-word out of respect for those around them, on campus with passing out fliers, buttons and stickers and getting signatures from people pledging that they would stop using the r-word, and even now, he has one of those buttons on his backpack. So, even though he doesn’t have a sibling with an intellectual disability or anything like that, he changed his ways and actually became a big advocate of the cause all because of what you said in class."
Ya, that's MY guy!
Mary Beth's entire speech was wonderful (not just the part about Mark). Here are her concluding remarks:
Wednesday, October 28, 2009
(Mostly) Wordless Wednesday
Helena's 1st bite of real food, sweet peas. We're holding off for a few more weeks before trying again.
Charlie Brown swirly
Caramel Candy Apples, gifts for our Buddy Walk team members
Tuesday, October 27, 2009
As a reminder to go to a dermatologist once in a while and to use sunscreen. My cousin (who is MY age) just had melanoma removed from her arm. That's SKIN FRIGGIN CANCER!! Scared the (bleep) out of us and sent me straight to my doc. We played whack-a-mole with one I had always lovingly thought of as a beauty mark. I didn't want to part with it, though docs throughout the years have suggested that I should. Thankfully, lab results confirm that it was fine.
It's fairly easy to get looked over (though you may need a referral and it could take a while to get in). I encourage everyone to stop putting it off if you have a mole that you've been wondering about and just set up an appointment. If naughty moles are caught early, it can be very treatable. Unfortunately, once melanoma spreads through the lymph nodes, it can be very difficult to cure. You can live with a little scar. You might not be so lucky with your beauty mark.
For more information on what to look for, click HERE
*to my bloggy friends, I'm woefully behind in my blog reading. I'll catch up and leave comments as I can.
Sunday, October 25, 2009
Trunk or Treat
Our church puts on a Trunk or Treat each year at Halloween and opens it up to the community as a free family-friendly event. We decorate our trunks, the kids safely trick or treat from car to car, and even the adults dress up. There are games, a parade, and even contests for costumes and the best decorated trunks.
I forgot to announce it earlier to our local friends (as I've had a few things on my mind), but we managed to make it today, despite yesterday being the Buddy Walk and today being Helena's baptism. I digress...
Gotta love little boys, right? I took Alexander shopping for a new Halloween costume (despite a trunk full of costumes). When we were shopping, he announced that he likes his jack-o-lantern costume best, better than any costume in the store. It's the one he wore last year. The one his grandma (Mark's mom) made over 20 years ago for his uncle Kent. Tonight Alexander won the Judge's Choice for best costume! His prize, a pumpkin. He was so excited!!!
Mark dressed up as an Oriole, the girls were lady bugs, and I was Little Miss Muffet. We had SO much fun. The only problem is that we have lots of candy left over. I should ask Mark to hide it for Halloween as I might have impulse control issues, knowing that it's in the house.
Another highlight of the day was watching our (hilarious, fun, and kind) youth minister Jason get slimed by the kids. He challenged the congregation a month or so ago to donate nearly a thousand bars of soap to send to Lutheran World Relief. He vowed that if we got enough, he'd agree to be slimed at the Trunk or Treat event. At last count we have collected over 1,050 bars of soap.
(for my RSS readers, be sure to check out the new header taken at the Trunk or Treat event)
Happy Halloween everyone!
Gotta love a pastor who dresses up like a student of Hogwart's
(as always, click each picture to enlarge)
Saturday, October 24, 2009
Toys R Us Guide for Differently-Abled Kids
shortest post EVER (give me a break. It's our Buddy Walk day)
Friday, October 23, 2009
A Special Joy: Sophie on Parenting.com
Our buddy MayMay is in the same round as Sophie and there are other faces that we know and love in the gallery. There are so many beautiful babes featured, so go and take a peek!
Thanks again Parenting.com!
Thursday, October 22, 2009
Spartan Sparkles Cheerleading Squad
Cheerleaders Welcome Special Needs to the Squad
10 Girls With Disabilities Cheer on the Spartan Sparkles Squad
By SUSAN AASEN and SADIE BASS
October 16, 2009
Watch the cheerleaders at Pleasant Valley High School in Bettendorf, Iowa, and you may want to stand up and cheer yourself. They don't always execute perfect routines; in fact, they may miss steps or clap off beat once in a while. But their fun is contagious.
These cheerleaders are like no others. In the Spring of 2008, cheerleaders Sarah Cronk and Sarah Herr got the idea to expand their varsity squad.
"I got really inspired when I went to a Special Olympics program where they had a bunch of cheerleaders come and we helped them with the clinic and everything," said Herr. "I was like, I want to spend more time with these great athletes."
Herr went to her coach, Pam Cinadr, and said she wanted to have a special needs squad cheer with the Pleasant Valley Varsity team.
"I just anticipated that it would be another flash in the pan, but once she got a hold of it she had a passion and it just took off," Cinadr said.
The recruits, ages 8 through 15, all have special needs, from autism to down syndrome. They're called the Spartan Sparkles, and they work every bit as hard as the varsity girls.
Since the spring of 2008, the older girls and the Sparkles have practiced together twice a week.
"Their confidence has grown a huge amount," said Brenna O'Neill, 18, the cheerleaders' captain. "Every single day they walk in with a bigger smile on their face, and they run and they're excited to see everyone and they're ready to practice."
"The big thing is that when we started we thought we'd be teaching them cheers," said Herr. "But we didn't think they'd be teaching us. They've taught us so many things about life and it's really amazing."
At every game during every season, they're out there – cheering together.
Cheering Brings Acceptance
"I think that it's really given them a feeling of belonging and acceptance. Usually when someone has a disability, society can only see what they can't do, but through the sparkle effect, we've really exposed what they can do," said Cronk.
"These obstacles they've overcome are just tremendous. I've learned a lot about perseverance," Herr added.
"Like there's thousands of people dying to see us perform," said 12-year-old Katie Dwyer, a member of the Sparkles.
And the best part of being on the team?
"Fun, yeah!" said Dwyer. "The friends. The friends I've made."
Go HERE to watch the video clip. Seriously, go now and I challenge you not to blubber. It is worth noting that Mark grew up in Bettendorf, IA. Although Pleasant Valley is his high school's cross town rivals, it still makes us proud.
Ukraine's Got (Serious) Talent
Wednesday, October 21, 2009
I had long conversations today with my kids' pediatrician, our breastfeeding clinic, and a pharmacist, in addition to a really smart group of momologists. Apparently, not only are most people seriously deficient in vitamin D, but it allegedly has some incredible health boosting and preventative effects. Some doctors and researchers are alleging that it can help prevent and fight off cold and flu viruses and also prevent breast cancer, colon cancer, type I diabetes and multiple sclerosis. Taken properly, it's not supposed to be toxic. click HERE
The caution I've been told and have read is that "large doses (1400-2000 IU/day) may cause hypercalcemia, a decrease in renal function, and nephrocalcinosis. Monthly blood tests to monitor serum calcium and parathyroid hormone levels should be done to protect against these health issues. Those with underlying kidney disease should avoid high doses of vitamin D3. Although some research indicates that dosages up to 10,000 IU/day are safe, staying below 2000 IU/day may be prudent."
I bought it today and am going to keep researching. Before too much time passes I wanted to put up what I've seen so far. Do your own research, and come to your own conclusions. I am not a doctor or pharmacist. Don't take my research as science or doctor's orders.
However, as I won't be getting much sunlight (which is how we best make vitamin D) me and mine will be taking supplements. Dosages vary by age, weight, and other factors. I've read that 2,000-9,000 IUs for an adult woman is appropriate. I've read 9,000 IUs is ok for pregnant women. The breastfeeding clinic said under 10,000 wouldn't be toxic for me as a nursing mom. I've read 35 IUs of D3 per pound of body weight is appropriate. A 40 pound child would then need 1,400 IUs a day. A 180 pound adult would need 6,300 IUs per day. So, dosing advice obviously varies.
Here are a few other tips on preventing the flu that I've read today:
1. Frequent hand-washing (well highlighted in all official communications).
2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat or bathe).
3. Gargle twice a day with warm salt water (use Listerine if you don't trust salt). H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.
4. Clean your nostrils at least once every day with warm salt water. Blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population. Sinus rinse kits are available at the drug store and relatively inexpensive.
5. Boost your natural immunity with foods that are rich in Vitamin C (citrus fruits). If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.
6. Drink as much warm liquids (tea, coffee, etc) as you can. Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.
Here are a few videos. I have my own opinion about this first doctor's message (especially suggesting tanning beds), but he has some interesting points about Vitamin D.
In a new study, researchers at the UCSD School of Medicine and Moores Cancer Center used a complex computer prediction model to determine that intake of vitamin D3 and calcium would prevent 58,000 new cases of breast cancer and 49,000 new cases of colorectal cancer annually in the US and Canada. The researchers' model also predicted that 75% of deaths from these cancers could be prevented with adequate intake of vitamin D3 and calcium.
Vitamin D Prevents Cancer: Is it True? -UCTV- University of California Television, click HERE
Buddy Walk on Saturday!
Monday, October 19, 2009
Supporting Our Community
Please check out this really cool raffle for friends of ours over at the Flege Farm (who happen to have a little girl with Ds). The raffle is HERE and will go towards helping the family as the dad recovers from heart surgery. There is some pretty cool stuff over there to bid on and it's not too late to contribute an item to be raffled.
Other dear friends of ours, the Marchenkos (who also have 2 little girls with Ds, one biological, one recently adopted) have just received news that their sweet daughter Polly has Moya Moya syndrome (in addition to Ds) and had a stroke and seizures on Sunday.
A family I've gotten to know and love have just received word that their daughter Quinn, who happens to have Ds, is cuter than a bug's ear and is just turning 2, has been diagnosed with infantile spasms.
Jaxson just got his trach and won't go home from the PICU until maybe Friday, amongst many other issues.
So ya, sometimes in the world of special needs come particularly heart wrenching experiences. And yet, we endure. We go on, because we have to. Because of a love and perseverance that other's sometimes can't understand. Despite the trials, most that I've known have testified that having a child with special needs has enhanced their lives, their very souls.
Two sets of friends are getting ready to travel internationally to adopt children with special needs, the Stumbo's are adopting a little girl, Nina, who has cerebral palsy. The Garcia's are adopting a little girl, Kellsey, who has Ds. Both are adopting through the amazing international adoption organization Reece's Rainbow, which assists orphans with Down syndrome and special needs in finding their forever families. Both are still collecting donations and running raffles and fundraisers. Both already have daughter's with Ds. Both are travelling a road that Mark and I may, someday, travel ourselves.
Check out their blogs, send good thoughts or prayers, donate or be a part of their raffles if you can. And, if you don't mind send a prayer for my son Alexander. Though it does not compare to some of the other issues our friends are facing, he has the flu and has had a fever for 3 days. We put him to bed tonight with 102.5 temp, a deep wet cough, and the chills. He's not eating or drinking much and is not himself. I pray he gets rid of this virus quickly. I pray none of the rest of us get it. I pray it is not H1N1, but on the other hand if it is, I can't do much about it.
I still struggle until I'm sick to my stomach with whether or not to vaccinate Sophie or any of us for H1N1 (as she is considered high risk for complications). I've spoken at length with her ped in town and just today spoke to her Docs at St. Louis Children's Hospital about my fears. I fear the vaccine will hurt my baby. I fear that if she gets H1N1 (well, you know the fear). I fear that the decision is out of my hands because as they said to me today, there is a much higher chance that she'll catch H1N1 than she has of accessing the vaccine in time anyway, as it won't likely be available for a while. Oh, and I have a 5 month old that I'd really rather not see catch any form of the flu.
So ya, it's a bit of a Debbie Downer post, but it's as real as it gets. So, please do what you can. Pray, send good thoughts, and bid or donate as you can.
Sunday, October 18, 2009
I'm Down with You
Jagatjoti Singh Khalsa says on the website in the forward:
"The joy and spirit of the Down syndrome community has always inspired me. I have often thought to myself, 'What if I could capture that feeling and share it with everyone else--especially during this time of negative headlines, greed and unconsciousness, when everything seems to be falling apart?'
Many people search their whole lives for peace of mind and unconditional love--pouring over self help books, attending seminars, listening to audio books and praying by their bedsides for help. The simple irony is that there already exists within the Down syndrome community a simpler model of emotional contentment and spiritual perfection. I've always felt that this extra 21st chromosome was a blessing, whereas most people misjudged it as a curse, problem or disappointment. To capture the spirit of these individuals, I embarked on a photographic journey--meeting, learning from, and photographing members of the Down syndrome community."
Go check out the website HERE and be sure to watch the clip below.
Young Man with Ds is Homecoming King
Friday, October 16, 2009
A Small Act of Love, from Brother to Sister
In a self proclaimed small act of love, Soeren gave an unforgettable speech to his high school peers that sparked a movement. The speech was about a brother's love for his sister with a developmental disability and his anger and frustration with our culture's prolific use of the word "retard" as an insult and synonym for stupid, clumsy, unfortunate, less-than. He minced no words as he drew parallels to racial epitaphs. His speech was meant for his school alone, an auditorium of 400. His father uploaded it to youtube and his words started a campaign that has reached thousands.
The love of a brother for his sister is powerful. It can and has moved mountains. It has educated masses. It has changed minds. It has made this world a safer and more compassionate place. Soeren has been featured in the media and has travelled, not just in this country, but all over the world. He is a co-founder of the "Spread the Word to End the Word" campaign. All for the love of his sister.
In July (cuz I'm not really busy or anything), I agreed to take on the role of VP of our local Down syndrome group. Besides raking in loads of cash and acclaim, my job is to book speakers for our monthly meetings. This month we had a speaker's panel of siblings to a person with Ds. Our panel consisted of a 20 year old young woman who's 23 year old sister has Ds, a 14 year old girl whose 5 year old brother has Ds, and a 14 year old boy whose 4 year old sister has Ds.
Their responses to some very serious questions will stay with me for a long time. They were honest, candid, real, mature beyond their years, and passionate. What struck me the most was their obvious love for their siblings.
They see their sibling as a person first. Yet, there is no denying the earth shaking effects on their lives and world-views. If you ask them, they are the ones who are blessed BECAUSE of their sibling.
I wonder, did we just happen to pick an extraordinary group of young people to speak? Is this a reflection of the times and how far we have come? What can we learn from their parents who have clearly done exceptional jobs in teaching their children/splitting their time/educating them/showering them with love?
As I look to the (not so distant) future, I often wonder about Alexander and Helena and what they might share in such a panel. From what I have already seen in Alexander, I'm certain I'll have a lot to be proud of and grateful for. In fact, I already am.
Thursday, October 15, 2009
Domestic Violence in Entertainment
October 10, 2009 Issue 45•41 Onion Sports
DETROIT—According to a local police report, Tigers first baseman Miguel Cabrera only connected on a pitiful 13 of 67 swings during an altercation with his wife Saturday, bringing his average down to .194 for the day, with a laughable .220 slugging percentage this month. "The guy'll swing at anything," Cabrera's wife, Rosangel, told reporters. "The truth is, he's been whiffing all year. When he does make contact, it's just a little dinker here and a dinker there." Though Cabrera continues to struggle, the scratches on his face indicate that his wife could be on pace to hit well over .400 this year.
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. The point of heavy posts like this is to get educated and perhaps shine some light on areas in our communities that people prefer to ignore and certainly not talk about in order to increase safety.
The first part of this post is an article written in The Onion on 10/10/09, a satirical and fake newspaper that I generally am a fan of. It's not meant to be taken seriously. In fact, I'd say this article was written to suggest that Miguel Cabrera is an abusive a$$hat. I get that. The truth is that Miguel Cabrera DID come home at 6am after drinking all night with his baseball buddies, woke up his 4 year old daughter, and had an altercation with his wife. She called the police for help. They decided to transport him to the police department when she asked him to leave the home (BUT DID NOT ARREST HIM) and called his general manager to pick him up.
There are so many things wrong with is that I don't know where to begin. The police said language was a barrier. They said that although she had injuries visible on her lower lip, that he also had an injury on his face, so they couldn't determine the aggressor. They said when a person is intoxicated, it makes it more difficult, and he was highly intoxicated. They said his wife didn't like him coming home intoxicated. They said neither party pressed charges. They said there was a damaged cell phone and broken gold neck chain at the home. They said they notified Protective Services because a child was involved.
Later Cabrera issued a statement:
"There was an incident that took place on Saturday and it is a personal matter. I am sorry this has become a distraction and I apologize to the Tigers, my teammates, and all of the fans. I would appreciate it if you would respect my family's privacy as I prepare for our next game."
1. Police are trained to determine the PRIMARY aggressor and to get a history of DV, regardless of intoxication, language barrier, or celebrity status. They are trained to assess fear. They are trained that this WAS domestic violence and he should have been arrested. Period.
2. Nice apology to the Tigers, his teammates and fans, but not his wife or child. Nice.
3. Despite the satirical nature of the article in the Onion, it left me shaking my head and asking why?
That brings me to the 1st video clip above taken from the Simpson's episode on 10/11/09. I love the Simpson's and again, I get that they were creating a despicable, but sadly believable character. The 2nd clip was taken from Family Guy on 10/11/09, which I've never been a fan of. Mark found it due to it's Russian political content and sent it to me. I see absolutely NO redeeming factors for this one.
These are examples from over this past weekend of DV in entertainment. Just this weekend. There are THOUSANDS of examples that I could have used. So my question is this, why is it OK to use DV as entertainment or satire? Does it go too far? How do you suppose Mrs. Cabrera feels? Not only was she injured by her drunk husband, but the police failed her, the whole world knows about this, and the Onion turned their very real situation into a batting average joke.
And now, more information to think (or puke) 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 14, 2009
Make Your Own 'More Alike Than Different' Poster
click to enlarge
Make Your Own More Alike Poster
Make your family member or friend with Down syndrome famous.
*NOTE: The hardest part for me was coming up with the text. I submitted my photo of Sophie to the National Down Syndrome Congress and immediately received an email with my text and copy of the original photo. This meant it was sent to production (it was a bit confusing, which is why I mention it). Tonight, 5 days later, I received my completed poster. It looks pretty darn good, if I do say so myself. But hey, consider the model.
Send NDSC a photo and your version of the More Alike campaign headline "Who's a better baseball fan, you or me?" together with brief text that answers the question. NDSC will create an 11 X 17 poster using what you send and return to you by email a high resolution PDF of your poster you can take to any printer to reproduce and distribute. click HERE
So, if your friend or family member, loves music, your headline might read: "Who's a bigger Dylan fan, you or me?" If she just graduated it might read, "Who's a better scholar, you or me?"
You get the idea.
And, you can feature anything that seems big - your baby's first steps, your son's Special Olympics gold medal, your daughter's softball single, birthdays, whatever.
They have to ask you to be brief. Use just a few words in the headline and keep the text to no more than 200 characters.
Once you receive your completed poster, print as many as possible and get them out in your community. Take them to your doctor's office, school, community center, church, library and ask that they be posted. You will be amazed at the results!
The NDSC will showcase all the posters produced in a gallery on ndsccenter.org. They'll invite folks to check them out and vote on their favorites. Winners will become part of the national awareness campaign for Down syndrome!
Tuesday, October 13, 2009
Learning to Eat with a Spoon
Miss L. and Mom had me practice using a spoon. They cheered and said YAY every time I took a bite. Mom says learning to eat with a spoon all by myself is important, but I think it's fun.
Next time Mom better put me in my high chair as I got myself and Miss L. all messy, but she didn't mind.
I'm gonna lick it!
I told you I was gonna lick it. Miss L. was really excited about this for some reason. She said it was good that I'm using my tongue or something.
I hope to keep practicing. Mommy says we can try ice cream next (maybe Pumpkin Pie ice cream if it's in the grocery stores)
Monday, October 12, 2009
The 2nd new item in the house comes to us from our new Physical Therapist. Until this month Sophie had been getting PT off site. We loved it because it got us out of the house and they had lots of great equipment. Our PT moved in June and our new PT is going on maternity leave. So, we are now having Mr. B come over once a week to do therapy in the home. We'll be going outside when we can and even other places, like a local indoor playground.
It will be interesting the first time we take her out in public with it. Maybe we can even see if she can do a little bit of the Buddy Walk with it. Now that would be something, walking the Buddy Walk.
For another mom's perspective, be sure to read Amy's post HERE.
Sunday, October 11, 2009
Gap Casting Call
The search is on for the next faces of babyGap and GapKids. Wouldn't it be amazing if one of those faces represented kids with Down syndrome? Think of the possibilities? There are prizes, but for me, the best prize would be seeing Sophie's beautiful face next to her peers in stores nation-wide.
I was allowed to enter 5 photos, so I sent 3 of Sophia and one each of Alexander and Helena (can't leave her siblings out). So here's what I'm thinking, please take a few minutes and go vote. Then, submit your own kid's photos, especially those with Ds. Let's see if we can show them just how cute our kids are.
Please vote for each of my 5 submissions as they won't combine votes for all 3 of Sophie's photos. You can vote once per day per email address through November 17th. Let me know if you voted and if you submit your own photos so I can vote for you.
Click HERE: On the left side, part-way down the page under Search Entries, enter ID numbers: 78139386 for Alexander, 728139829 for Sophie, 518139914 for Helena, 698139336 for the 2nd entry for Sophie, & 658139946 for Sophie's last entry.
Here's more information:
"Gap is excited to announce the launch of its annual Casting Call in partnership with Disney Family.com - a site that provides inspiration and ideas for parents on a variety of topics important to today's families. Gap invites parents nationwide to enter babies (ages four and under) and kids (ages five to 10) into the Casting Call for a chance to be featured in the store windows of babyGap and GapKids in February 2010. Additionally, the winners will receive a VIP experience for four at Disney's THE LION KING in either New York or Las Vegas.
This year, we're also introducing the Fan Favorite, which gives your little stars a chance to win a seven-day/six-night family vacation to either Turks & Caicos or Jamaica from Beaches Resorts - The Luxury Included® Family Vacation.
How it Works:
Entries will be accepted from September 22 - October 22, 2009. Once the entry period closes, a panel of judges will narrow down all of the entries received to 20 finalists (five baby boys, five baby girls, five boys, and five girls). Those finalists will star in a professional Gap photo shoot the week of November 16, 2009. On December 7, 2009, the finalists will be announced on www.gap.com/castingcall and will be voted on by the public until December 21, 2009. The four children who receive the most votes (one from each of the categories) will be announced as the winners on February 1, 2010."
Saturday, October 10, 2009
Team Sophie Gear Promotion
We are a little behind in our fundraising this year, so we're doing a promotion. The next person who donates $25 or more to Team Sophie will receive an adult XL white hooded Team Sophie sweatshirt with small logo, a $35.99 value (as seen on Mark below). We also have a children's size small white t-shirt, with small logo for the next person who donates $10 or more to Team Sophie, a $14.99 value, (as seen on Alexander below). Make your donation and then leave me a comment so I can deliver your item to you. Remember, I only have 1 of each for this promotion! All donors will receive a Team Sophie sticker and photo card while supplies last.
Check out some of our gear below. T-shirts are short sleeved and can be layered with a long sleeve shirt for warmth as seen below. They are nice and thick, high quality Hanes shirts/sweatshirts. Hats come in white or black. Be sure to visit our store today!
Friday, October 9, 2009
How to Make Caramel Apples
Get all of your toppings set out before preparing your caramel. Taste test your toppings by eating half the supply as you set up. Hot apple cider or hot chocolate compliment this family activity very well. Cut out squares of waxed paper on a jelly roll pan and make room in the fridge. Use farmer's market apples or apples that have not had wax added to them. Wax makes it harder to coat with caramel. If your apples have wax, you can quickly dip in boiling water and wipe to get the wax off. Also, refrigerated apples set the caramel better. Do your best to pull the stems out (we had trouble with this) and put your sticks in. Make sure you have batteries and memory in your camera.
Either melt all the caramel at once, or half a 14 oz. bag at a time. I microwave 1/2 bag with 1 tbsp milk for 60 seconds, then stir with a wooden spoon and put it back in for 30 more seconds. Stir until it's all melted. It will be hot, so adults should coat the apples and then help the little ones dip them in the toppings. Work quickly as the caramel will harden pretty fast. Don't wait until all apples are done to refrigerate them. Put each one in the fridge as you finish them or the candies will start to melt and slide off of the apples.
Refrigerated apples can last 2 weeks, unrefrigerated - for about a week. Give away as gifts by placing them in cellophane bags and tie with ribbons (perhaps give to teachers or team mates if you participate in a Buddy Walk).
Besides being a hoot and a holler (and finding out that Sophie can devour candy corn by the fist full - who knew?) this is not necessarily an unhealthy treat, as long as you consume in moderation of course. The point is, have fun with it, be creative and get messy with your family. These are the times we live for.
Thursday, October 8, 2009
In Search of DS Awareness Billboards
October is Down Syndrome Awareness Month. Locally we have 4 billboards up around town to promote our Buddy Walk and Ds awareness. I'd like to start a collection to publish here before the end of the month. Does your town have a Ds awareness or Buddy Walk billboard? I prefer photos of the actual billboard, but can take a digital proof as shown above. Send photos with the city, state, and name of the person on the billboard (if known) to me by October 26th at: ReJenerationS@gmail.com
Please also feel free to share on your blog, twitter, social networking site or any other place that you can think of. Thanks for your help, now go spot some billboards!
Wednesday, October 7, 2009
High Tea for Sophie
I put together a book with the hand made invitation and menu. It also has a portrait of every guest and letters that each of them had written to Sophie, as we were already celebrating her life before her arrival. It is my goal that she knows she was always loved and always 100% a part of our family.
The montage was the 1st one I made with onetruemedia and was my thank you to our guests who carried me during the hard times early on and still do today. Plus, it gave me a reason to use the awesome Natalie Merchant song (Kind & Generous).
Today, one of Sophie's most favorite toys is her singing tea party set. I look forward to many tea parties to come.
Tuesday, October 6, 2009
"R" Word Sparks Controversy at UIUC
Thousands have read that LTE. Now people are aware of the hurtful nature of the "R" word. Now people will be more careful and chose more wisely the words that they use. Now we can move on. Right?
Not so. Dear readers, take a moment to read the comments to the LTE. If you don't want to, I understand. I know it hurts to read such pointless cruelty. So, to summarize, there are numerous responses in support, not just of the banner itself, but of the use of the "R" word. Those of us who ASK that people CHOSE different language are called bleeding hearts and the PC police. We are reminded that the world is not a nice place, to grow up, to walk away, to take a class in American constitutional history. The 1st Amendment is thrown around like a football in defense of this intolerant language. In fact, the backlash of the original LTE may be worse than the banner which started this.
Today THIS beautiful article in the Daily Illini was written from the perspective of a woman who has a little sister with Down syndrome in response to those comments. Please take a minute or two to read it. Though there are sure to be more negative comments, I have been pleased to read some very well argued and articulate points being made.
In my experience there are those who are simply unaware of the hurtful nature of the word. Through education and love we have won many over. Some are in the middle, not caring either way. They too can be reached and this is why we keep going. It's sad to come to grips with, but there are always going to be MANY who defend the use of the word who come up with the most disgusting responses. We may not be able to reach them, but we cannot sit idly by while our loved ones are abused. I hope my skin never gets so thick that I'm no longer offended because that will mean I have grown complacent.
Keep in mind, the whole idea behind the campaign to end the "R" word is a movement of acceptance and inclusion. It is a movement about respect. It is a movement that does not wish to remove a word from the dictionary or violate anyone's right to free speech. Instead, it is about educating the world around us and then asking people to make a conscious choice not to use it. In this way a new word with the same derogatory meaning won't spring up in it's place and the world will be made more safe for Sophie, for Dom, for Jeffrey, for Sarah, for all our friends and their loved ones.
This is Down syndrome Awareness month. Won't you help by spreading the word?
Here's another one of my favorite PSA's
Monday, October 5, 2009
And now, I'll leave you with one of my favorite Special Olympics PSAs.
Sunday, October 4, 2009
A Walk in the Park
After living in Madison, WI for years, we had become big Brewer's fans. However, Pujols is a SUPERSTAR, not only for his talent in baseball, but for his work in the DS community (he has a daughter with DS). So, the kids and I wore red and Mark wore blue.
Earlier I had received our Walk in the Park tickets and t-shirts and discovered that they sent us 2 very large shirts by mistake. They let us keep them and sent us 2 correct sizes. The smallest kid's size was too big, even for Alexander, so it wouldn't work for Helena and Soph was swimming in hers. I didn't want to sew and I had these 2 extra large shirts so I decided to try and make no-sew-tie baby lap blankets for the girls. They were super easy to make and turned out great. They were a huge hit at the Walk and I was stopped a zillion times about them.
In the morning we headed to Busch Stadium for the pregame DSAGSL pep rally. It was led by an energetic DJ that got us all pumped up. After the pep rally, our wrist bands got us onto the warning track. We did a couple of laps, snapping a zillion photographs. Seriously, we could have sneezed on the field, as we were right THERE!
Our seats were with our good friends RK, Braska and fam, which was so fun. We even got to see Adrienne and Russell (who sported a mohawk, before the game!) Unfortunately the day felt colder as it went on and we got quite a bit of wind. That's not a big problem for me, but for Soph, who is especially sensitive to temperature fluctuations, it was not ideal.
Afterwards, we came back to the hotel for a brief nap, pizza, a dip in the pool (Helena's 1st swim), and baths. It's time to hit the sack like Mark and the kids did long ago.
Saturday, October 3, 2009
October, Awareness Month for Domestic Violence & Down syndrome
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.
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. The point of heavy posts like this is to get educated and perhaps shine some light on areas in our communities that people prefer to ignore and certainly not talk about in order to increase safety.
In honor of both DV and Ds, this 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. Victims 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
Friday, October 2, 2009
Online Hate Speech
According to the Facebook Code of Conduct, users "may not post or share content that...makes threats of any kind or that intimidates, harasses, or bullies anyone or is derogatory, demeaning, malicious, defamatory, abusive, offensive or hateful. Moreover, creating groups that attack a specific person or group of people should result in immediate termination of the creator's account. Note: groups that attack a specific person or group of people (e.g. racist, sexist, or other hate groups) will not be tolerated. Creating such a group will result in the immediate termination of your Facebook account."
Is the use of the "R" word just too broad to fit the qualifications for hate speech against people with disabilities? (said with sarcasm) Fine, do a search on Facebook for 'Down syndrome' and you'll turn up thousands of hits. While many groups are positive, there are those which are not. Try this, search for 'looks like Down syndrome' and you'll find a number of groups disparaging people with Ds, clearly in violation of Facebook terms.
Google and YouTube spokesperson Scott Rubin says, "We don't permit hate speech" and they define it as content "that it attacks or demeans a group based on race or ethnic origin, religion, disability, gender, age, veteran status and sexual orientation or gender identity. Though sites may include offensive words, content is considered hate speech only if comments or videos target a person simply because of his or her membership in a certain group."
Let me see if I understand this. As long as the groups, pages, videos or comments that use the "R" word or reference Down syndrome or people with developmental disabilities, --as long as they are making fun of themselves or people who DO NOT have developmental disabilities, then they are not in violation of the terms. Meaning, you can choose to take the quiz on Facebook to make fun of yourself. The Facebook group 'Paris Hilton looks like a Down syndrome horse' makes fun of Paris Hilton. Videos, comments, groups that are created to mock themselves or others by comparing them to a person with developmental disabilities is all in good fun? It doesn't actually target a specific group. Hmmm?
Just for fun, let's pretend that the quiz was not "How Retarded Are You," but rather about a specific race, ethnicity, or religious group. Does that change your perspective? Why does the anonymity of the internet give people the permission to spew hatred that they likely would not do if they had to be identified in real life? Why is asking for a basic level of respect considered a violation of the right to free speech?
If these things bug you too, there are actions you can take. Most of the sites have a way to report the offensive content. Even if it seems pointless, try to do it anyway. Join 8,500+ of us who are members of the Facebook group REMOVE the "How Retarded Are You Quiz" Off Facebook. Join OZ SQUAD (more on that later). Flood the net with positive messages about people with developmental disabilities and work to change minds. It's worth the effort because the results mean a more safe and inclusive world for all of us.
I'd like to end with a sweet episode of the children's program Calliou called 'Calliou and the Dragon' in which Calliou makes a friend with special needs. Please watch it, but don't read the comments (posted on YouTube) unless you're ready to take action.