Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1^st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

Fighting for People with Disabilities

Villanova Buddy Walk 2012

Please join Team Sophie on Sunday, October 7, 2012, at Villanova University Stadium for The Children’s Hospital of Philadelphia 11th Annual Buddy Walk^® and Family Fun Day. In addition to the Walk^®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

In just ten years, this Buddy Walk^®has raised over $2.1 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful.

To Register to Walk with Team Sophie, visit our page at: http://giving.chop.edu/goto/Team_Sophie

Scroll down to Team Sophie and click Join Team and follow the instructions.

To Donate without Walking, visit our page at: http://giving.chop.edu/goto/Team_Sophie
Scroll down under the photo of Sophie and click, Donate to Team Sophie! 
 

On behalf of our family and Team Sophie, we thank you for your support.

Gratefully,

Mark, Jen, Alexander, Sophie, & Helena

Down Syndrome Awareness Month

Team Sophie! Thank you Maureen, Ras, Samuel, (and baby to be) for joining us for our 2nd Buddy Walk at VU.

October is Down Syndrome Awareness Month. For the past few years this blog has participated in the 31 for 21 challenge. 31 for 21 is when bloggers commit to post every day in an effort to raise the awareness of Down syndrome, otherwise know as Trisomy 21. Although our lives are too busy this year to participate, you can find a list of bloggers who have taken the challenge HERE. You can also do a search on this blog for 31 for 21 and find around 100 posts from previous years.

Once again Team Sophie rallied for our local Buddy Walk. Here is Alexander with the Star Wars character Boba Fett (he's going as Boba Fett for Halloween this year). Seeing his favorite characters in person proved a bit scary, so all of the pictures are of Alexander with the Star Wars guys in the background, a safe distance away.

Grandma Paula flew in to spend the week with us and walk with Team Sophie. We are so blessed! While we celebrated near Philly, family members who could not make it once again rallied and attended the Buddy Walk in my hometown. Pictures forthcoming (hint, hint Liz!) We are touched beyond words to see such an outpouring of love and support from our family and friends.

We are grateful for our wonderful friends. I met Melissa in the C2P2-EI course that I took through Temple University - Institute on Disabilities. She brought her sweet family and signed each of them up to different teams as so many of our friends had teams participating this year. Melissa and her husband were on Team Sophie. Thank you so much!!!

This is my friend Kim representing her son Nolan & Sue representing her son Sylas. Mara, Nancy, and Cecilia were busy bees as they worked the auction tent and shot photos. If any of my C2P2-EI friends have a picture of us together, please send it to me.

I got up close in personal with these guys for Alexander. Note to self: Stuffing the sweatshirt front pocket with cameras, kleenex, etc. WILL make you look 7 months pregnant. D'oh!

Team Sophie and Alexander as close as he could muster.

The Buddy Walk at Villanova Stadium is a big event. We have bounce houses, live music, cheerleaders and football players cheering on the teams, face painting, food, exhibitors, a silent auction and raffle, games, Star Wars characters, Berenstain Bears, Elmo, a Tot Lot play area, and more. It truly is a great family fun event.

We even had a chainsaw ice sculpting artist make this right in front of our eyes.

Here's Sue and Sylas. Sy is currently hospitalized with Croup (mama has it too). Please send up a prayer for healing.

Buddy Walks are always a highly emotional time. There are great joys to be sure and each year there are fewer tears. Yet old wounds that never fully heal can easily be broken open. Memories of past events collide in my head with thoughts about our family's future, about Sophie's future. I wonder about her siblings and when the day will come when one of them asks why we have a Team just for Soph. We don't hide the fact that their sister has DS, but our discussions are purposefully age appropriate. To them, she's just "Sister."

We had a prenatal dignosis of our daughter's DS. We were scared and hadn't a clue as to how incredibly lucky we were. We needed the gift of time to see with new eyes. Having a child with DS has its challenges (as all children do), but the overwhelming joy far exceeds the hard times. Sophie is a gift and our family is blessed. Life is good. Go Team Sophie!

Mega Halloween Post

These first three pirate pictures were taken by my talented friend Cecilia when we did our fall photo shoot.

The sky was amazing this night. This is actually our house. For real this time (click HERE to see the house I tried to claim, ha!)

Alexander and I decided to make haunted houses out of milk cartons. I admit, I still love to play with scissors and glue, just like I did as a kid. We used supplies I had on hand, including; aluminum foil, black-and-white scrapbook paper, ribbons, halloween stickers, etc. I bought a few extra battery operated tea light candles to light them from within.

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On Saturday Alexander's whole class was invited to Max's house for a birthday party. Costumes were required. It was a wonderful party.

Last night we carved our pumpkins. We have kept them indoors so far because the squirrels are relentless. I carved a more traditional face with a bat for the mouth. Mark carved Milo from the band the Descendents (see his t-shirt), and Alexander special ordered Thomas the Tank Engine. The girls colored pictures and The Great Pumpkin Charlie Brown kept them entertained, as did the candy. The girls have discovered lolly pops and Helena even bit through a wrapper to get to a Butterfinger. Alexander, Mark, and I were up until midnight finishing up Thomas and taking pictures, but it was well worth it.

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Happy Halloween Everybody!

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Going for a Walk

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Alexander the Friendly Ghost

He decided to be a ghost for his school party and parade, so we went shopping for material.

We used two different gauzy materials and four separate layers. Since I knew he wouldn't tolerate material on his head for more than 30 seconds, we made a hole for his head.

I cut holes for his arms, rolled the holes under and used fabric glue to keep it from fraying.

I painted his hair white outside and had him wear a garbage bag to keep his clothes clean.

I painted his face and neck glow-in-the-dark white. There was black paint for his eyes, but Alexander vetoed that.

Add the gloves and he was set!

Spooky!

BOO!!!

The girls and I went up to Alexander's school to watch the Halloween Parade.

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Violence Against Women and People with Disabilities

October is Domestic Violence Awareness Month. 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 Domestic Violence victims are not equipped or trained to offer proper care to victims with disabilities." Women with disabilities are three times more likely to be sexually assaulted than women without disabilities.

President Obama and Vice President Biden spoke about the unprecedented efforts across the Federal Government to protect victims of domestic and sexual violence in an event marking Domestic Violence Awareness Month. This is definitely worth viewing in its entirety, regardless of your political affiliation.

"When a victim of abuse leaves a violent relationship it is often a particularly vulnerable time. We need to make sure that we are doing everything that we can for victims in this critical period to ensure that folks who are seeking help and protection get that help and get that protection. That's our responsibility. So these are just a few of the steps that we are taking but this bottom line is this; nobody in America should live in fear because they are unsafe in their own home. No adult, no child. No one who is a victim of abuse should ever feel that they have no way to get out. We need to make sure that every victim of domestic violence knows that they are not alone, that there are resources available to them in their moment of greatest need. As a society we need to make sure that if a victim of abuse reaches out for help, we are there to lend a hand. This is not just the job for government. It's a job for all of us." (President Obama)

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)

All you need to do is spend a few minutes at the International Coalition on Abuse and Disability (icad) to see just how prevalent this is.

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

Our Haunted Yard

We went all out in decorating for Halloween this year. Every day for weeks we added to the front yard. The end result is pretty amazing, doncha think?

This is obviously not our home, but is on Mark's route to work. My point and shoot camera really doesn't do this justice, especially the night shots. This is a family that embraces Halloween and I totally dig it. (click the pictures to enlarge)

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