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.

Making October

October. It is the designated awareness month for Down syndrome, domestic violence, and breast cancer which all have a personal significance to our family. It offers up the fall harvest, the heart of football season, Buddy Walks, turning leaves, crisp air, apple cider, pumpkin bread, and Oktoberfest. It heralds the return of kids in footie pajamas, warm sweaters, and thick, colorful tights. Yet the best thing about October is All Hallows Eve. My husband does not share my passion for Halloween, but I hope to be passing it on to my children. He hates scary shows but that doesn’t stop me from watching marathons by myself.  I tried to resist dragging out the decorations until October 1^st, but Alexander asked for them, so up they went during the last weekend of September while watching reruns of best zombie show ever, The Walking Dead.
Every year I add a few pieces to the collection. We’ll never be as awesome as this house nearby, but I try.  This year I found a set of 4 silver jack-o-lantern pails at the thrift store, the light up ghost above, the haunted house, long legged spider and the felt banner below.
The blue jar on the gel fireplace above the banner is the new good behavior jar.  The kids get a cotton ball when they behave and lose one when they are naughty.  It is empty here as they filled it this past weekend, so we took them to the most amazing harvest party, ever.  But I’m getting ahead of myself.
Sometimes the kids and I make the decorations, such as these milk carton haunted houses (see original post HERE).  Two years ago Alexander wanted to be a ghost, so we made his costume (see original post HERE).  This year we’ve decided to make the costumes again.  Alexander is currently into the computer game Minecraft.  He wants to go as the scary character Herobrine.  Helena decided to be a wolf, which she tells me regularly while howling, and Sophie will be a kitty.
Herobrine, like all things in Minecraft, is made of blocks of color that look like pixels.  Though the photo above doesn’t show the color of the clothes very well, they actually match pretty closely.  I bought nude material to make long sleeves, gray felt to cover his shoes, and card stock to make the sword (glued to card board).  To pixelate the shirt and pants, I’m going to try and use fabric spray paint.  I plan to section off blocks using duct tape to mark the areas that I will paint and pray it will look good.  For his face, I will paint on the facial hair and white around his eyes.
For the wolf and kitty I bought a set of hoodies and leggings, black for Helena and gray for Sophie.  The wolf fur is black and brown.  The kitty will be mostly gray, but I also have some white as well.  I’m flying by the seat of my pants with these as I have no pattern.  I think I will cut the fur in the shape of the sweatshirt and hand stitch it onto the sweatshirt.  I’m not sure if I should do full sleeves, or just patches.  If I have time, I’ll cover the sweatshirt hoods and try and make the furry ears stand up with pipe cleaners.  I really don’t know how much I should cover their legs.  I will make them each a tail and stitch a patch of fur to their gloves.  I’ll make felt shoe wraps and stitch some fur on there as well.  A little face paint should finish up the look.  If anyone has words of advice or ideas, please let me know.
Now back to that amazing party.  The kids filled the good behavior jar just in time for a fall harvest party, so we decided that would be their reward.  I met Chris through the C2P2-EI training and then his wife Kim and their gorgeous children.  Kim’s parents throw this bash every October and man oh man do they know how to do it up.  On their property they have goats, ducks, alpacas, and miniature horses.  The party took place mostly outside complete with a DJ running a dance party on the drive way, a fantastic spread of food, open bar, and a kitchen full of desserts (which Helena somehow found right away).  Behind the house they had turned the trails into haunted trails.  Each section had a different theme, such as the Civil War.  You could walk the trails or take a golf cart to explore them.
Alexander made a new friend and I enjoyed catching up with Chris and Kim.  Helena stuck by my side and Sophie boogied down on the dance floor with Mark to the Monster Mash and Gangnam Style.  The place was packed with the nicest people you ever want to meet and I got a kick out of seeing all the older gents with their tweed Irish flat caps.  I really want one of my own.  (Cap, not older gent, that is).

The school is having a Halloween party and costume contest on Friday, so I need to get to those costumes.  Please send good vibes that I get them done in time! 

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

1 in 4, an Epidemic in Plain Sight

October is Domestic Violence Awareness Month (DVAM) & I am just as passionate about this as I am about advocating for our loved ones with disabilities.

Last night I just happened upon the most amazing documentary called Telling Amy's Story of Amy Homan McGee who was murdered by her husband on November 8, 2001 after years of enduring domestic violence (DV). It is airing on Public Television throughout the month of October. see schedule HERE. If you don't see your channel, find out how to get it on your public television channel HERE. If you get the chance, it is worth your time to watch the documentary in full and not just the clip below.

I want to quote the Detective Deirdri Fishel who tells the story, except that there are too many amazing quotes to list them all. What you don't see in the clip below is the Q and A that Mariska Hargitay hosts after the documentary. This discussion is EXCELLENT in describing what DV is, why victims stay, and how to help. If I were training DV advocates again as I did for many years, I would use this documentary.

Recently we have seen a our national attention turn to bullying (click HERE for a ton of resources). In the wake of recent suicides after being tormented for their sexuality, a campaign called It Gets Better to reach out to young people who may be gay or questioning has taken off HERE. I commend all of this work and give them my full support. However I would be remiss if I didn't SHOUT FROM MY ROOFTOP that we have been up to our asses for YEARS with violence at the hands of domestic abusers. Where is the public outcry? Why isn't our Homeland Security Code Red? It needs to be because 1 in 4 women will be a victim of a domestic abuser in her lifetime and that my friends is unacceptable. 1 in 4 is an epidemic in plain sight.

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.

It's not too late to sign up for 31 for 21. Remember, the challenge is to post every day in October and not all of the posts need to be about Down syndrome.

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The Beginning, Part 3

continued from HERE

Three years ago my full-time job was to assist victims of domestic abusers in times of crisis and to train and manage crisis hotline advocates to do the same. I was (am) damn good at it, but it meant that everyday was a crisis day. Every day I tried to help someone on the worst day of their life. I spoke with abuse victims in unimaginable circumstances who were trying to make sense of situations that they had little control over and that had left them with almost no hope. Not many are called to this field, but once it gets in your system, it never leaves. I know now that my many years of fighting injustices and standing up for those whose voices had been stolen was my Advocacy boot camp. I had no idea that I would soon use these skills to fight for acceptance and inclusion for people with developmental disabilities.

I had entered a new phase called "Telling Towards Personal Acceptance." I said the words out loud in the strangest places and to the least likely people. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." I said it over and over, but rarely was it for the benefit of the person I was telling. I said it so that I could hear my own voice speak truth to our new reality.

After a meeting about domestic abuse at the courthouse, I was in a discussion with two former and one current co-workers when I blurted out the news. "I'm so glad you are handling it the way you are," Jenny said. I thought she was saying she was glad we hadn't terminated, but I suspected I had misinterpreted her words, so I asked even though you could have cut the discomfort with a knife. She meant she was glad I was open and talking about it. Jenny became a source of support for me at the office from that moment on.

When I signed up for prenatal water aerobics, I heard myself telling our instructor. I felt that I needed to let her in on why I might not be as joyful and chatty as those other blissfully lucky pregnant women (that I now hated/envied) since I had been Chuck Norris roundhouse kicked out of their happy club (bitches)! Instead I got to hear how she was once pregnant and learned that the baby had a chromosomal deletion that was not compatible with life which led to an abortion.

The first time (or maybe the 2nd) that I failed a non-stress test-NST (test of the baby's heartbeat and movement) at my twice weekly appointments, I was sent to the hospital for further evaluation. After I was released I headed to a fast food drive up and ordered comfort food. Still wearing my I.D. bracelet and obviously pregnant, the young woman asked why I had been at the hospital. I muttered a response and she asked if they were worried that the baby had a problem like Down syndrome. "Why yes, actually," I said. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." This young woman was stunned and we held up the line while this complete stranger and I talked about it and I heard myself saying, "It's ok. It's going to be ok." It was the first time I truly believed it.

I carried the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, with me everywhere. It was my new bible, especially as I had kicked the King James version to the curb. Waiting at the pharmacy where I was wearing a very cute olive green eyelet dress (cute to compensate for my pain) I set the book down on the counter. My car keys covered the title and all you could see was the picture of a beautiful naked baby in her father's arms (we would soon have our own professional shot taken like this of Sophie & Mark). The pharmacist was a woman that I had been friendly with in the past and she had kept up with the pregnancy, but hadn't yet heard the news. I found myself slowly, deliberately sliding the keys off of the book and hoping/daring her to read the title. I watched her closely as she read the words and looked up with wide, kind eyes. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome."

did you miss The Beginning, Part 1? Click HERE,
Part 2 HERE

The next installment, Part 4 HERE


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Get it Down, 31 for 21

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Happy October everyone!

October is my favorite month, hands down. Autumn is by far and away the BEST season with the changing of the leaves, back to school, football season, colorful tights, warm sweatshirts, apple cider, hot chocolate with marshmallows, caramel and candy apples, hay rides, pumpkin patches, and - HALLOWEEN! It is also the month selected to raise awareness about two issues that I am very passionate about and have dedicated my life to; Down syndrome Awareness and Domestic Violence Awareness.

This is the 4th year of 31 for 21 and my 3rd year of participating in this challenge. The challenge is simple (but I'm already exhausted). Bloggers sign up to post EVERY DAY for the month of October to raise awareness about Down syndrome. Not every post will be about DS because it is only a part of our lives. Most posts will be about our lives in general. Some will be just a picture or two. As more and more of us take this challenge (click the button above to sign up at any time during the moth of October, and do NOT feel guilty if you miss a day), people will start to notice. The more attention this gets, the more education will get out there which leads to acceptance and inclusion, two of my favorite words.

As it is also Domestic Violence Awareness Month (DVAM) I will also dedicate some posts to this issue and issues that involve violence against our loved ones with developmental disabilities. This is a subject that usually gets ignored in our community and these posts in particular tend to cause the crickets to start chirping. However, it is a subject of great importance and I won't ignore it just because it may be uncomfortable.

Don't worry, there will be plenty of warm fuzzy moments. For those who are wondering why the challenge is called 31 for 21, it is that there are 31 days in the month. It is also because DS is caused by having 3 copies of the 21st chromosome instead of 2, hence 31 for 21. Won't you join me?

Domestic Violence, the Original Pandemic

Pandemic as defined is "an epidemic of infectious disease that is spreading through human populations across a large region; for instance a continent, or even worldwide." If we were to equate domestic violence (DV) abusers to an infectious disease (which I quite like), then this definition works. Abusers certainly destroy more lives and kill more people every day than H1N1, and yet we hear little public outcry for a 'vaccine' or 'cure.' DV happens to people in every race, socioeconomic status, religion, age, sexual orientation, and education level as abusers do not discriminate. The spread of DV goes unchecked when we turn a blind eye and say that it is a private matter, when our law enforcement or laws fail to protect our citizens, and when our society condones many of the behaviors of abusers while blaming the victims.

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

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.

October is Domestic Violence Awareness Month (DVAM) as well as 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. 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

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

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

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

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.

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.