8th World Down Syndrome Day

This is Sophie’s first professional photo with her daddy holding her.  It was inspired by the cover photo of a book that was very important to me after our prenatal diagnosis of DS called, Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives.

Why March 21st?  Down syndrome, also known as Trisomy 21, means that instead of having a pair, people with Down syndrome have 3 copies of the 21st chromosome.  That’s what makes 3/21 our special day.

This is a karyotype, or picture of Sophie’s chromosomes.  You can clearly see the trisomy of #21.

In honor of our daughter and all our bazillions of lovies with DS around the world, please enjoy this video created to celebrate this special day by the International Down syndrome Coalition.

While today is a day to celebrate our loved ones with Down syndrome, it is critical to point out that we have SO MUCH work to do in this world of ours.  Our loved ones with disabilities are far more likely to be abused in all forms and repeatedly throughout their lifetime.  Our culture still supports exclusion in our language making the Spread the Word to End the Word Campaign so important.  Our children are still being denied access to inclusive education with critical supports and services far too often.  More and more I am hearing of families still facing exclusion from the faith communities that should be at the forefront of acceptance.  Mothers receiving a prenatal diagnosis of DS are still given limited, outdated, and gloomy information and are often encouraged to terminate their pregnancy.  This has lead to a 90%+ abortion rate once mothers receive a prenatal diagnosis of DS.  Outside of the disability community, we face brick walls and locked doors in every direction.

It is a daily fight and it is exhausting and it is worth it.  I have to agree with Maureen Wallace in her article Down syndrome: Is awareness overdone and action overdue? when she, in righteous indignation, practically screams her demand for action.  As a community we have shown the power we have when we unite.  Although regular life is exhausting enough before adding advocacy into the mix, we need more people to pick up this mantle.  Whether people are natural leaders or not, our children teach us that we MUST be their voice.  We must take a stand and fight for their safety and dignity.  We must.  We must know our history and honor the warriors who came before us who fought for the rights our loved ones have today.  Please visit Visionary Voices, a project collecting information and stories of these warriors so that we cannot forget.

In that light and in honor of those who go to battle every day, enjoy the video below.  Oh, and happy World Down Syndrome Day!

For more who feel the same about the need for action, visit http://downsyndromeuprising.blogspot.com/

For Sophie

The wound that never fully heals, sighs as

I dared to lay down its protective armor hoping

for a moment’s breath without the weight of it

when Ignorance launched a stealth attack.

 

I am just One but I am fierce. And I am weary.

Stinging, raw pain threatens to bring me down and yet forward.

You gaze at me with beauty, resting in the safety of my arms

which are too weak to protect you always.

 

As your accidental warrior thrust into the fight

you trust me to be your voice. Failure is not an option.

I’ll never stop. My hands shake with rage or despair

at the indignity of the battle that cares not if I need rest.

 

I speak out but it is your strength that feeds me.

You deserve nothing less than everything.

When I falter, legions rise to carry us through the task.

I am One but we are countless in our numbers.

 

No darkness can survive your light.

Every cell of you is love that you give away to all

blessed to cross your path.  Drawn to you,

we are forever altered from touching Grace.

 

The truth of your lessons cannot be denied.

We’ll win them over Baby, for your message is timeless.

I am your accidental warrior and you are my tiny teacher

changing the world with your gentle, forgiving embrace.

On Faith and Inclusion

This morning I introduced Sophie to her kindergarten Sunday school class.  I explained that she has Down syndrome, that it isn’t anything to be afraid of and that she is so excited to become friends with her classmates.  We talked about similarities and differences and that differences aren’t bad.  I shared that she may not be able to talk with them like the other kids in class but that she loves to play and learn and have fun. 

Her teacher read the book “My Friend Isabelle” by Eliza Woloson. It’s a fun book about a typical friendship between a little boy named Charlie and his friend Isabelle. Isabelle has Down syndrome.  Charlie does not.  This book highlights the similarities between these friends and encourages kids to understand that they too can be friends with someone with differences.

After the book we made sure that the kids knew that they could ask us questions at any time.  A letter modified from the one we sent home at the beginning of the school year to her kindergarten class has been sent to the families from Sunday School.  Click HERE.  This letter opened up a lot of doors for us at Sophie’s elementary school and we hope it will do the same with her Sunday school peers.

Our new church has a membership of 2,600 and therefore has many staff members to serve our community.  We are working with the Director of Children and Family Ministry on finding someone to act as a PCA, (personal care assistant) for Sophie during Sunday school so that both Mark and I can attend services.  I have found someone who can provide training to the aid.

Beyond how inclusion will be addressed with Sophie, I’ve felt drawn to look more deeply into the needs of people with disabilities in our congregation.  I’ve been reading “Including People with Disabilities in Faith Communities by Erik Carter, whom I saw present at the PDE Bureau of Special Education Conference last week.  This interfaith book is so rich with information that we donated a copy to the church and Sophie’s teacher is reading it now.

In my mind, I would love to  tap into existing work of the church and be a part of a Task Force on Disabilities.  In my research I happily discovered that much work has already been done on the national level.  “A task force of volunteers was asked to develop policy and recommendations for the church to work for justice with persons who have disabilities, both within the church itself and the wider social order. A consultation with informed Presbyterians drawn from the synods enriched the work. This policy of the Presbyterian Church (U.S.A.) confirms that the church—the Body of Christ—is to be a fully inclusive body in all dimensions of its life.”  Living into the Body of Christ a paper on these policies and recommendations was created in 2006.  Click HERE.

Out of their work was written a Congregational Audit of Disability Accessibility & Inclusion which is just a fabulous tool for any faith community to take an honest look at how inclusive and accessible their community truly is.  Click HERE.

I can’t possibly list all of the good work they have done on this, so instead if you are curious I will send you to the Presbyterian Health Education and Welfare Association website where you can read about the other important work being done on domestic violence, child abuse, HIV/Aids and more.  This link is specific to disability concerns.  Click HERE.

So off I go to find out what is happening at church already.  When I’m done, I plan to have a replicable module for inclusion available for faith communities.  But first, a nap!  Happy St. Patrick’s Day.

Tools from PDE Conference

Where to begin?  I am blessed to have just returned from the 3 day annual state conference put on by the PA Department of Ed - Bureau of Special Education through PaTTAN held in Hershey, PA.  I attended as a staff member of Pennsylvania’s Education for All Coalition, Inc. (PEAC) and helped run our table in the exhibit hall.  I also attended as a parent of a child with a disability.

As is always the case after an event such as this, my brain is in overload and I need time to process the experience.  However, there are a few pieces of this event that I just have to put out there right away.

I have to send everyone I know to visit Barbara Doyle’s website at http://www.barbaradoyle.com  Be sure to look under Helpful Handouts for a wealth of free downloads.  Her passion for inclusion and protecting our loved ones with disabilities from abuse make us kindred spirits.

Rick Guidotti was our first keynote presenter and I am now an unabashed groupie.  An artist and award winning fashion photographer, Rick founded Positive Exposure to put his talent to use in a different way.  “Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences. Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.”  Meet Rick:

Hopefully the keynote video will be available online soon, but until then, here is a shorter version of the address he gave on his passion for taking photographs of people with different abilities to highlight the beauty that much of the world does not initially see.  Be sure to check out the gallery of images which does not get covered in the embedded video.

Some of my good friends and I are planning a trip to his studio in NY as he invited us up for a photo shoot of our kids!  Lastly for this post, I highly recommend the children’s book Moody Cow Meditates.

  

“Peter the Cow is having a bad day. After missing the bus and wiping out on his bike, he loses his temper and gets in trouble. To make matters worse, all the other kids and cows are teasing him, calling him "Moody Cow." Peter's day just seems to get worse until his grandfather comes over. Can Grandpa teach him to settle his mind and let go of his frustration? This vibrant children's book is a fun and funny way to introduce children to the power of meditation. With full-color illustrations by the author, Moody Cow is ideal for parent-child sharing and for repeat reads.”

My kids love it and would recommend it for all young ones.  It is a great way to introduce the ideas that all kids have bad days and that there are ways to feel better when angry thoughts have us melting down.  My kids also love the Mind Jar app and we plan to make each of the kids a jar of their own.  After all, I love projects with glitter.

More on the R Word Campaign, 5th Anniversary

Here is another great piece on the Spread the Word to End the Word Campaign by Lawrence Downes in The New York Times, March 2, 2013.  Just think of how many people have heard our message since this movement began 5 years ago!

(excerpt) …people can be thoughtless and cruel, or well-meaning, and never know the damage their words can do. The campaign is about inclusion. History is full of stories of people from outside who fought their way in. To those with intellectual disabilities, it sometimes seems the battle is just at the beginning, when little victories — like an end to insults — are hugely important.

For the complete article, visit HERE

Take the pledge today www.r-word.org

Download the graphics, (the fb cover photo is great!), badges, posters and more HERE!

Keep Spreading the Word

My crush on this man only deepens.  The campaign to Spread the Word to End the Word is coming up on March 6th.  Watch the embedded clip below of John C. McGinley talk about his son Max and why this campaign is so important.  Don't forget to take the pledge today at www.r-word.org

Sanctuary

I grew up in the Presbyterian church that my mother attended as a child and where she later married my father.  My sisters and I were baptized and confirmed there.  Mark and I were married there as I had always dreamed.  When we visit my hometown, the sight of the tall, stone, gray building lets me know I’m home. 

I married a lapse Catholic (his words) and I wanted to find a church home that would be comfortable for both of us.  We joined a Lutheran Church and it worked for our growing family.  Alexander and Sophie were baptized there.  We moved and joined another Lutheran church that was just as welcoming and we remain friends with our pastor to this day. 

Our family relocated here 2.5 years ago.  This time when we moved, we knew that this new place would be our home for many years.  We could finally settle in, yet somehow finding a new church community wasn’t a priority.  It began weighing on my mind and last Sunday I started church shopping.  Despite the fact that we had been going to a Lutheran church, I felt drawn to my roots.  A sprawling Presbyterian church not far from our home had caught my eye.  I was taken by the stone buildings which are typical of old churches in the area.  Leaving my family at home I attended the late service.

The magnificence of the architecture inside stunned me.  As the services began I couldn’t help but look around in awe as the morning light shone through the stained glass.  We sang Gloria Patri and I realized how much I missed the traditions of my denomination.   I can’t tell you what the sermon was about, but what did stand out for me was the sound of the choir who sang in the balcony behind the congregation adding a depth and beauty to the hymns.  After the service, I was collecting information for visitors when I met the membership staff member.  She spent a better part of an hour telling me about the history of the church as we toured its grounds and I knew I had found our new church home.

*kids building

 

  

This morning my family arrived early at our new church, and I was beside myself with excitement to show them around.  Our first stop was the children’s building for infants through 5th graders.  Not only is Helena’s classroom for Sunday school, but they also have a preschool there during the week as well.  We have applied and are hoping to send her there next year as we have not been impressed with her current school.

*3 year olds classroom & weekday preschool

 

*2nd grade

*hallways

 

*kindergarten

Today was an important day for the congregation as we welcomed our new head pastor for her first service with us.  After the service my family toured the rest of the grounds.  The original church, now reconfigured and called the Chapel, still has its original Tiffany stained glass windows.  The Chapel is much smaller than the new sanctuary but is similar to the size of a regular church.  They hold the early services there as well as smaller weddings and funerals. 

*Inside the smaller Chapel

  

*original Tiffany stained glass

 

In the Congregational Hall we gather after services for coffee and treats and on the first Tuesday of each month a massive labyrinth mat is laid on the floor for prayerful walking. The church hosts many adult classes, support groups, and activities here.  The youth begin their Sunday classes in the gym which is attached to the hall.  Week day exercise classes like dance fit, Tai Chi, and yoga are offered there as well as a basketball program for kids with special needs. 

My family has never been a part of such a large congregation (membership is 2,600), but somehow they make it feel welcoming and warm.  I recognized people from last week and a few remembered me and stopped to meet my family.  Alexander says he likes it more than regular school and the girls are excited to belong there.  I see my family here for many years learning, growing, making new friends and I am thankful to have been lead there.

*new church sanctuary

    

*from the left balcony

 

 

*back of sanctuary, choir and organ balcony

 

Although this is a video, I shot it only for the sound of the choir sending us on our way after services.  What a beautiful way to fill us up for the week to come.