Trunk or Treat 2015

The PTO put on our school's first Trunk or Treat on this fine October evening.  For those unfamiliar, this is an event where trunks are popped, decorated, and children travel from car to car to Trick or Treat.  A DJ, pretzels and pizza added to the fun.

"I want to be a fox and a pirate," Helena declared weeks ago and she stood by her plan.  

I donned a witch's hat, Alexander was an alien from Alien vs Predator and Sophie went as Doc McStuffins.

Mark arrived after working late and helped us set up our bubble machine.  He discovered that taking flash photography of bubbles mid-flight produces quite the image.

Despite Alexander and I having pneumonia (and spending a bit of time in the van in front of the heater) we were glad to have gone to witness the benefits of inclusion in action.  Sophie was interviewed by the high school tv kids who knew her from summer camp.  Her friends from class came and spirited her away from me for most of the event.  Would this be the case if she remained unknown to them?  I know in my heart it would not.  This is why our advocacy, promotion of inclusion, acceptance, and respect do not get sick days.  We do it for Soph and for all of us who happily reside outside of "normal."

 My little Hamlet

No Pity. No Charity.

“Children with disabilities are amongst the world’s most marginalized and excluded children.”
---World Health Organization, World Bank, 2011

I will never give up.  Out here in Philly we have formally declared an Inclusion Revolution. 

I am a revolutionist.  Are you?  #InclusionRevolution

Here are the thoughts of revolutionary educator Torrie Dunlap at a TEDx Talk.

Isn't it a pity? The real problem with special needs

What do we gain when we build a community where everybody belongs?

What do we gain when we separate kids and what do we lose out on when we do?




How do we want our children to be regarded? As something fragile, broken, and special? Or as people who have a right to fully participate in our communities? I believe that when we examine our own mental models around disability we will no longer default to pity and charity but instead we will put our efforts into building communities that are accessible to everyone and everyone will benefit.

#InclusionRevolution Pass it on!

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.

Last Day of School 2014

Yea, though I battle through the valley of the shadow of IEP season, I shall fear not using the Procedural Safeguards: for the law art with me.

With a brutal winter and a ton of snow days, our school year ended even later than it typically does.  It is with great joy that we have entered SUMMER. 

This IEP season for both kids has been the most difficult to date.  Countless IEP meetings in person, via email and by phone could not resolve differences in opinion between our family and our district.  Hiring a great attorney changed all that and with her help we are finally moving forward in a way we can support.

I’m not litigious and pride myself with my negotiation skills, so it is no small thing that we are ending this school year and entering ESY for summer with 2 settlement agreements.  I did not want to have it go to this level, but our core belief in inclusion, FAPE, and LRE just didn’t line up with our district’s plan for educating our 2 kids with IEPs. 

Despite our disagreements I continue to believe we have a fantastic team of teachers and therapists who believe in our kids.  When you have as many team members as we do, you have to get creative in order to be thrifty with thank-you gifts.  I ordered these extra large soup mugs in November intending to use them as holiday gifts, but then I had spinal surgery and they sat in boxes.  I’m pretty happy with how they turned out.  Mark helped me package them in cellophane and ribbons and dropped them off.

In any case, I’ve learned so much through advocating for our kids and I am more determined than ever to make systems change.  I’ll just need a little time to recover.

Welcome to SUMMER - rising 4th grade boy and 2nd grade girl!

Buddy Walk 2013

Team Sophie rocked our 7th year of participating in the Buddy Walk for Down syndrome awareness.  To be honest, I wasn’t sure we would be doing it this year for a variety of reasons. 

I formed a new Daisy Girl Scout troop for Sophie’s 1st grade and Kindergarten peers.  Our troop decided to support Team Sophie and Team Nate.  Maddy is in 1st grade and her handsome little brother Nate happens to have DS.  Somehow we ended up in the local paper.

By Linda Stein
lstein@mainlinemedianews.com

On Sunday about 4,000 people will gather to take part in the 12th annual Buddy Walk and Family Fun Day which benefits the Children’s Hospital of Philadelphia Trisomy 21 Program.

Trisomy 21 refers to the presence of three copies of the number 21 chromosome, rather than the usual pair. It causes Down syndrome, one of the most common genetic disorders affecting some 350,000 Americans, according to the Down Syndrome Society.  This year, 16 Girl Scouts, who are part of Sophie’s Team, will take part.

Sophie Schrad, 6, a Radnor Elementary School student with Down syndrome, will join members of her Daisy Scout troop taking part in the walk, said her mother, Jen Schrad. The Schrad family has participated in the event since Sophie was born, said Schrad, who is also the troop’s leader.  read the full article here.

Not only was I blown away by the support from Sophie’s troop sisters, but I came home the other day to find an envelope full of more donations from our elementary school community for Team Sophie.  We are overwhelmed.

Darth Vader & a very brave young Jedi

We are exactly where we are supposed to be.

Our New/Old Normal, part 3

continued from part 2

I went back to the office and as I worked my mind kept churning the same questions over and over.  How could I have missed this?  How could we have explained away so many things?  How could we look to his father as a model for why it was normal?  And then it hit me.  Hard.  I stopped typing.  I stopped breathing and began to shake.  I knew the truth before the thought, which felt gently whispered in my ear, was fully formed.

I sent Mark the following text to which he responded immediately, “yes.”  “Mark, have you thought about whether or not you or I have Asperger’s?”  I couldn’t just say, “Dude, you totally have Asperger’s,” could I?  He responded, “Yes.  Most definitely.  Did it ever strike you as odd that I can concentrate on writing a vodka book for years on end, or focus on driving for 20 hours straight, but I can’t seem to keep straight our schedules one day to the next?  I’ve certainly thought about it.”

That was the moment.  The big one.  The ground shifting under my feet insight to the reality of our lives that have completely changed my view of the vast complexities of human existence and our family truths.  As it turns out we know quite well what Asperger’s looks like and it doesn’t resemble Max from the great tv show Parenthood AT ALL.  Except a little, depending on what you’re looking at. 

A flurry of texts between myself and my husband continued through the day recounting his traits that seen through the lens of Asperger’s made perfect sense.  These are things that I both love, love, love about him but also the things that drive me up a wall backwards.  Mark completed a series of Asperger’s questionnaires and would text me the results each indicating a strong likelihood of Asperger’s with something like, “Huh. Who knew?”  There is a reason we think of Alexander as little Mark.  He is little Mark.  He called his mom who said she understood some of the things she saw as he was growing up and beautifully said, “but this doesn’t really change a thing.” 

Except it does.  It changes everything and I will be forever grateful that my son was diagnosed with Asperger’s.  Now we can learn more about it so that we can support him in the ways that he needs.  Facing this reality which was at first a trip to Hell is now just our new/old normal.  The best part, the BEST part is the fairly certain conclusion that we (admittedly as lay people) came to about Mark likely having Asperger’s as well.  He says this is probably why it didn’t faze him much when we learned about our son’s diagnosis.  Somehow he felt the truth of it on an unconscious level and KNEW that despite the challenges, the benefits and joy are real.  In that millisecond when the thought was whispered in my ear, my heart lightened.  My grief left me and I began to laugh so hard I cried. 

People say all the time that people with Asperger’s can lead happy and full lives and we KNOW this to be true.  We live it every day.  Just ask my husband, the mighty professor, author, hilarious, affectionate, kind, father, and friend about his happy and fulfilled existence.

Our journey to accepting (with relief and even joy) our son’s and possibly my husband’s diagnosis of Asperger’s couldn’t have happened any other way.  It was all perfectly timed.  We have our precious daughter Sophie to thank for teaching us about our own disabled attitudes and our subsequent metamorphosis.  As humans, we all are different and different does not equal less than.  We all have different skills, interest, strengths and areas that we need support.  I thought I understood that but I didn’t truly get it like I do now. 

This is the global shift that is happening.  As a community, people with disabilities or differences and their loved ones are standing together to demand that the rest of the world get on board.  We are blessed to be a part of it.  I am so proud of my family and my husband for having the courage to look inward.  Despite the struggles that will surely arise, I am GRATEFUL for this life. 

to be continued…

Our New/Old Normal, part 2

continued from part 1

It took a couple of months to finish and the final report itself is 21 pages long.  The school psychologist had Alexander self report, she had his teacher, OT and ST therapists complete evaluations, she conducted classroom observations, and Mark and I complete questionnaire after questionnaire.  The tests bore out what we already knew.  His IQ is 111 or above average.  He has a superior vocabulary but delayed processing speed.  Areas of significance include emotional control, initiation, working memory, planning/organizing, organizing materials, and monitoring.  ADHD was ruled out but attention problems were highlighted as well as adaptability, functional communication, attitude towards school, and activities of daily living. 

Perplexed by his speech pattern, his ST called a stuttering expert at CHOP who indicated he has seen the same pattern in people with Autism.  This was about the same time that the latest series of parent questionnaires started to scare me.  His pediatrician did not think it was ADHD and began asking questions that scared me.  We were headed in a direction that I was desperate to stop.

That’s when we got a phone call from the school psychologist and speech therapist.  They didn’t want to send home the parent questionnaire for Asperger’s without giving us a heads up, which was a good move.  Three days later the reports were completed and we were told that “results of the social-emotional and behavioral assessments along with the testing results, the data from the questionnaires, as well as the observations indicates that Alexander demonstrates behaviors that are consistent with the characteristics of children with Asperger’s Syndrome.”  

I spent the weekend alternating between crying, raging, drinking wine, cursing God, painting my kitchen blue, researching Asperger’s, bargaining with God, searching for ways to blame myself, and then landed firmly in denial.  Mark was unfazed and that fazed me.

How could this possibly go unnoticed for so long?  Taken separately each of the traits that I now suspect are tied to Asperger’s could be explained away.  Much of them were exactly how Mark was as a child.  The trains obsession, the picky eater, the meltdowns and on and on.  I became depressed and felt like such a failure.  Still I dragged my butt to work and commiserated with my colleagues who also work in the disability field. 

It was a miserable few days and I was so disappointed in myself that I couldn’t stop looking at my son differently.  Not negatively per se, but with eyes that know too well the struggles that go along with disabilities and the immense load of work that had just landed on my shoulders to ensure he will have everything he will need.

continued HERE

Be the One

Please enjoy this wonderful video and share, share, share!

"Be The One" {Music Video} from Life Stage Films on Vimeo.

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.

American Horror Show Pilot Review

Down syndrome, the macabre, a new tv series, a stellar cast, you have my attention.

When I learned of a new tv series on FX that would not only be scary, but feature a character with Down syndrome, I was thrilled. All too often actors with disabilities are cast in one-dimensional roles where their disabilities define their character. In the previews we are given the hope that in the case of American Horror Show, the character with DS would have a quirky personality that would contribute to the spooky theme. I could get behind that.

According to the official website on FX, "American Horror Story revolves around the Harmons, a family of three who moved from Boston to Los Angeles as a means to reconcile past anguish. The all-star cast features Dylan McDermott as “Ben Harmon,” a psychiatrist; Connie Britton as “Vivien Harmon,” Ben’s wife; Taissa Farmiga as “Violet,” the Harmon’s teenage daughter; Jessica Lange in her first-ever regular series TV role as “Constance,” the Harmon’s neighbor; Evan Peters plays “Tate Langdon,” one of Ben’s patients; and Denis O’Hare as “Larry Harvey.” Guest stars for the series include Frances Conroy as the Harmon’s housekeeper; Alexandra Breckenridge as the Harmon’s housekeeper; and Jamie Brewer as Constance’s daughter."

If you feel like you've seen this show before, it's because you have. American Horror Show goes beyond paying homage to fright films that we are familiar with. The writers lifted bits of plot points from classic horror films and threw them all together like stone soup without even an attempt to show us something original. If you are interested in a full review of the story line, camera work, or strength of the acting, do a google search and you will find a plethora of reviews. Yet while I am interested in these aspects, it is the character Adelaide who happens to have DS that has my attention.

There are spoilers so, X out now if you must. Clips are for mature audiences only.

The following clip is the opening scene to the series. Despite the thumbnail image, Dylan McDermott is not nude, though if you want to see that, he obliges many times in the pilot episode. Please watch as we are introduced to Adelaide for the first time.

Opening Scene


The next embedded scene takes place at present day with the Harmons newly moved in and Vivien stripping wallpaper. Please view but be forewarned that this scene contains horrific dialogue.

Present Day

Finally, this clip is after Addy (Adelaide) breaks in the house again and Vivien deals with her.

Last Clip

In the first minute of the show we watch as the doomed preteen twins call Adelaide a freak and then make a sexual overture to her. Clearly in the case of her mother Constance, the writers were going for shock value delivered by a truly hateful villain. She refers to her own daughter in ways that are so evil that I felt verbally pistol whipped while listening to the dialogue. She insults "brown" people and people who are homosexual as if it's normal conversation.

So, I'm in a quandary. I will watch the series, in part because I need to see how it ends. I need to see if my theory plays out that Constance and Addy aren't actually living humans but are a part of the haunted house. Yet, I am horrified by the treatment of Adelaide and I was utterly unprepared for what I saw.

In the case of the movie Tropic Thunder which garnered such backlash for its mocking of a person with disabilities and repeated use of the word retard, writer and actor Ben Stiller defended the plot as satire, which fell short of an acceptable excuse. So, how can American Horror Show be defended simply because they needed to develop a character as heinous as Constance? Even if she "gets hers" in the end. How is it that I'm the only person besides my friend Nadina that is taking about this?

It's Not Acceptable R-word PSA

The Spread the Word to End the Word campaign has a new PSA. It will be airing tonight 5/24/11 during Glee at 9:50. Read more about it and the talented actress and self-advocate Lauren Potter HERE

Please be advised that this PSA uses strong language.

Russia's Forgotten Children - ROOF

Years ago when Mark was studying at Georgetown under the brilliant Dr. Murray Feshbach, I first learned of the conditions of the Russian orphanage system. A story on 60 Minutes stuck in my heart and mind that featured Murray who spoke about Russian demographics and orphanages. When Mark and I began planning a trip to Russia in 2003, I knew I wanted to do...something. I began researching on the internet and found Russian Orphan Opportunity Fund - ROOF.

After a couple of hours of devouring their website, I discovered that their US office was located in Racine, WI. We were living in Madison, WI at the time and I just about fell out of my chair. It seemed Divine Providence that we would find them and get involved. We had our first experience raising funds from friends and family to help support the work of ROOF at Podol'sk Orphanage. We were in contact with Karen and Peter Jansson (parents to Georgia) and met with them to turn over the money raised from our generous friends, co-workers, and family. It was enough to support programming in Podol'sk for 3 months.

Though we have remained supportive of ROOF through the years, it is Mark and I who have most benefited from our relationship. Our lives have been forever changed and inspired by the staff, volunteers and the orphans we've met. During a research trip to Russia, Mark lived with the family that co-founded ROOF and we remain in touch with Andrew and Georgia.

I could go on and on, but their website has a wealth of information, including a brand new brochure called Russia's Forgotten Children. I strongly encourage you to check out their website and brochure. Click the image below for the brochure or visit http://www.roofnet.org/forgotten


embedded video from our trips to ROOF in Moscow below. if you do not see the video, refresh the page or click HERE

Make video montages at www.OneTrueMedia.com

Little Teacher

Many mistakenly believe that people with developmental disabilities have limited emotions or opinions, or they buy into the idea that people with Down syndrome are angels who are always happy. I invite you all to spend a day with Sophie.

Our new house was vacant for a while (the closing was yesterday) so we spent the day cleaning it from top to bottom. After just 10 months in our current house, we will be relocating just a mile or so down the way over the next couple of weeks.

Sophie displayed curiosity about her new house, excitedly exploring every nook and cranny.

She showed deviousness & cunning by quietly sneaking outside (more times than my heart can take) to visit the neighbors as soon as she saw I was distracted.

She showed displeasure with being confined to certain areas of the house as we cleaned from room to room.

She used problem solving skills to break down baby gates that she couldn't open, taught herself to unlock the deadbolt, & showed an understanding of cause and effect when she mastered opening our brand new baby gate in 2 minutes.

She showed defiance when she refused to nap.

She showed pleasure when I played her favorite movie.

She knew she wanted more goldfish crackers, so she grabbed them and poured them on her plate faster than I could stop her with a look that said, "Mom, don't come between me and my fish." (while making the ASL sign for fish).

She showed delight in the fact that we can run in a big circle between the living room and dining room, which makes the game of tag so much fun. Her unabashed belly giggles and squeals of joy echoed off the walls in our empty home.

She imitated her mommy by trying to help sweep the floor, just like her big brother and little sister.

She asked for help by gently patting my arm and saying, "Ma!" and was persistent until she had my full attention.

She showed her stubborn streak when she refused to eat the lunch I had provided.

She is cranky now because she was too riled up to nap in her new surroundings.

She showed compassion to her baby sister when Helena was upset by sharing her toys and finding her pacifier, which she knows helps calm her sister down.

Sophie may have a very limited vocabulary but she manages to get her wants and needs known with the kind of spunk you would expect from any other 3.5 year old.

There is a reason for that. If you limit yourself to seeing only the areas that others define as delayed or different, then you are missing the lesson that Sophie is so much more like everyone else than she is different as are all people with disabilities.

Daily she teaches me to challenge my perceptions and redefines my definition of normal. And just like her siblings, she's determined to give her old lady gray hair.

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Tim Shriver on Bill Maher's Show

I know that this blog seems like a Tim Shriver fan club lately, (maybe it is) but I'll be darned if I could pass up posting this interview. Thank you Tim for taking this man to school and for working so hard to spread the word despite being met with such arrogance and adversity.

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Tim Shriver on the Colbert Report

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I only wish Stephen hadn't closed with the gay joke.

Way to go Tim!

For Cindy and David Combs

A year ago I was honored to be introduced to my friend Cindy Combs. She is the self advocate who volunteered to go on live television with me to promote the Champaign County, IL Spread the Word to End the Word campaign and events in 2010. Cindy and I met at Developmental Services Center (DSC) a day or so before our morning show appearance to talk about the interview. DSC is an essential organization for people with developmental disabilities in Champaign County. Sophie's amazing developmental therapist Judy was from DSC and the developmental playgroup there was essential to her progress during our 3 years in Champaign, IL.

DSC staff members Janice McAteer and Kim Harris joined us and I had asked my friend Tracey Fairchild to go over what to expect during our interview as she had been doing the Morning Show for quite a while. She ran us through practice questions and Cindy brought us all to tears with her heartfelt message. Fearless and unhesitating in her responses, she talked about how hearing the "R" word hurt her and her friends with developmental disabilities. She talked about how her life is full of friends, work, and hobbies and that she is just like everybody else. In her gentle yet powerful way Cindy made her case for inclusive language which would lead to acceptance and respect for all people. I left that meeting humbled by my new friend.

On the morning of our live tv appearance, I was a bundle of nerves, but not Cindy. She and Kim had arrived at the station before I did and were chatting pleasantly. During our appearance Cindy spoke just as beautifully as she had during our practice run while I fell over my words. Listen to her message.

A couple of days ago I got a call from my dear friend and President of the Champaign County DSN. Ellen was not calling with good news. Cindy and David had been riding their tandem bicycle as they have for years when they were struck by a car. Cindy passed away. David was air lifted to the hospital where he remains in critical condition. My former community is in deep mourning and our hearts are broken. A great light in this world has gone out.

Thank you Cindy for being such an inspiration. David, we are all lifting you up in prayers.

Tributes can be left at DSC's website, http://www.dsc-illinois.org (News tab, then Blog)

Initial news coverage of the accident (HERE)

Email Campaign Calling for Justice (story HERE)

Take the "R" word pledge today http://www.r-word.org/

Budget Cuts to Special Olympics

"We have a silent epidemic in this country. Children with special needs remain the primary targets of bullies in schools across this country. Health care continues to discriminate against people with intellectual disabilities. Employers still don't have the solution for hiring people with intellectual disabilities. Special Olympics is not just a nice event...We're a social inclusion movement fighting discrimination and prejudice...The current House budget eliminated [funding]. It's not a hair cut, it's a guillotine."

---Special Olympics Chairman and CEO Tim Shriver

As I said to a friend who first alerted me to the budget cuts, maybe members of the House would like to come over and take candy from my baby as well. For shame!

This is one video you want to watch.

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