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!

Gratitude

Yesterday Sophie went to her friend E’s “Birthday Party in Paris!”  I think the scarf and blue stripes fit the theme quite well.  Soph actually kept the scarf on the whole time.  E’s house was decorated in bubble gum pink, Eiffel towers and pink poodles.  So cute!

I brought a bag with an extra pull-up, wipes, and a straw/lidded cup. I pulled the birthday girl’s mom aside and for the first time ever (and Soph has been to a LOT of birthday parties) I truly did not feel apprehension.  I made sure she knew to use the cup to avoid a spill.  I showed her the pull-up and wipes and made sure she was comfortable helping Soph should the need arise.  She is pretty independent in the potty, but has a regular need for a change if we don’t initiate a bathroom break.   

AND THEN I LEFT! Mark and I had a babysitter coming over and I needed to get ready.  I actually RAN out the door. 

It wasn’t that the dozen girls swarmed Sophie when she arrived as if they hadn’t seen her in ages (it was 1 hour after school got out).  It wasn’t that the birthday girl’s brother exclaimed how much everyone really likes my daughter. 

silly faces!

It was the quiet arrangements and understanding from the birthday girl’s mom that have me on.the.floor. 

She knew Sophie has to be closely watched or she is likely to run off and she’s fast.  As keeping a dozen 6-7 year old girls entertained is difficult enough on it’s own, being far into her pregnancy meant that she knew she needed reinforcements.  So, she got them.  She had a wonderful young lady there who as far as I could tell was the official Sophie Minder.  Now, Soph’s peers do a great job refocusing her, but she can be stubborn.  This helper was fantastic.

spinning girls!

The mom didn’t blink at the idea that Soph came with an extra pull-up or lidded cup.  She didn’t have a look of anxiety on her face when I told them to have fun and headed for the door.  She was unconcerned and ready.

I’ll say it again.  I dropped Sophie off at her friend’s birthday party without a trace of anxiety, knowing she was in loving hands with people who accept her as she is.  The adult in this scenario made arrangements ON HER OWN to be able to make this happen.  It couldn’t have felt more natural.

THIS is why we believe in inclusion.  It’s not about academics alone.  It’s about building a community where everyone belongs AS THEY ARE inside and outside of school!  Sophie's friends have embraced her for as long as I can remember, but folks, she's got multiple generations on her side and it is AMAZING!

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.

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.

Happy Halloween

The day after Superstorm Sandy, the Kerstings who did not lose power, had us over for dinner, hot showers, recharging computers and baking cupcakes for Sophie’s school Halloween party.

By candle light at home we decorated the cupcakes and watched Charlie Brown movies on the laptop.

Superstorm Sandy tried but was unable to take our Halloween from us. Our power came back on at 5:46am, 32 hours after we lost it. I know because the cable box made a clicking sound and I woke up immediately.  With it came heat, tv, internet, school, and a happy family.

My little wolf

Kitty cat in her award winning costume with her friends 

Alexander as Herobrine from Minecraft 

Helena headed to preschool in costume and the kids got on the bus.  As Sophie goes to am kindergarten and repeats class by attending pm kindergarten, she had two Halloween parties.  In the afternoon, Helena and I headed back to school for the Halloween parade which was held indoors followed by parties in the classrooms.

embedded video below.  If you can’t see it, click HERE

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We were so excited to have the Kerstings join us for trick or treating.  As Ras is from Germany, Samuel is 2, and Klara is 1, this was their first year for trick or treating.  That was a lot of fun to witness. Sophie’s hip started bothering her, so we carried her between houses but had her walk to the doors.  The kids made quite the haul. Getting out of the house and socializing with the neighbors was just what we needed.

Thank goodness our generator arrived on Friday. We will be glad to have it during the next power outage. It’s powerful enough to run the fridge, furnace, and a few other items, which is all we really need.  Here’s hoping that won’t be for a long time.  Happy Halloween!

Inclusion and the Dignity of Risk, My Big Tiny Kindergartner at Last! Part 3

continued from Part 2 HERE

The weather teased that summer would surely stretch on, yet it slipped through our fingers with the outgoing tide.  Labor Day passed and Helena began preschool three mornings a week.  This leaves us childless for the first time since we had kids and I have to say, it’s pretty amazing.  On that first morning Mark and I sat in the quiet house and just stared at each other, relishing the silence, doing nothing.  Helena officially weighs three pounds more than her wispy older sister, yet they are same height.  The girls both wear a size 5, which makes stocking their wardrobe that much easier.  Helena (Lainey-Lou) has the long slender fingers of an artist or musician, the ruthlessness and skills of a seasoned interrogator, and a scream that makes the neighborhood dogs howl.  We love the social interaction and structure preschool provides to our most willful, loud and wild child who starts each morning talking before she opens her eyes.  The promise of preschool was a big motivator for potty training as we told her all summer that she couldn’t go to school with diapers and she hasn’t. 

Sophie and Alexander’s school is much larger than the Devonshire Elementary of my childhood.  There, we had only one class per grade.  My kids will have between 3 and 4.  At Open House I nosed around the classrooms where Alexander and Sophie would spend the year.  As my finger traced the letters of Sophie’s name distinguishing her cubby, my heart caught in my throat as it would off and on with regularity for the next week or so.  This was real.  My baby was going to Kindergarten.  

Parents mingled, teachers gave (sometimes nervous) presentations, and the first of many volunteer sheets were hung on the doors.  I took pictures of the classrooms to show Mark as the event was adults only and he stayed home with the kids.  It would be fair to say that most kindergarten parents that night were brimming with mixed emotions, but I was inwardly confident that no one could possibly understand the enormity we were experiencing.  Then Sophie’s Speech Therapist introduced me to a new family who has a son is in Alexander’s class.  Their daughter is 3 and happens to have Down syndrome and just like that I snapped back to reality and off of my self-imposed, imaginary island.

That night I delivered a letter that would go home with each of Sophie’s classmates on their first day.  This letter was plagiarized with permission from my dear friend and amazing woman Gillian Marchenko.  Sophie’s teacher Mrs. W. and her Principal supported the letter and the book that Mrs. W. would read which introduced her peers to the concept of differences and Down syndrome on an age appropriate level.  Our decision to put Sophie’s disability out there came down to this.  We opted for full disclosure, not just for her peers, but for their parents too.  At this age kids notice differences and naturally ask questions.  They have a built-in curiosity without judgment that we tend to lose as we age.  We wanted them to know Sophie, to know she may have differences, but to understand that different is not bad.  The letter opened the door to answering questions.   The plan was to get it out there so we could move forward.  We included the parents and hoped that they would embrace us.  They have, in droves. 

Sophie’s first day of Kindergarten was on a Friday which meant that Helena did not have preschool.  As a tribe, we walked to the bus stop, Sophie rolling her backpack which was half as big as she is.  I reminded Alexander 5 thousand times to sit with his sister on her first day.  I rattled on about having a great day, or was quiet and it was all in my head.  I can’t be sure which.  The bus arrived, the kids hoped on the bus, we buckled Sophie in her seat and my two oldest children rode off to school together.

Of course I hopped in the van and drove straight to school.  I beat the bus there and found her Personal Care Assistant (PCA) Miss A.  We waited together and I have no idea what we talked about.  It seemed as if an hour passed.  It had not.  When the bus arrived I fought with every fiber of my being to stay on the sidelines.  I snapped pictures, but let her and Miss A. get in line with her peers.  I cannot stress how desperately I wanted to hop in line with her.  I schemed a plan to sneak into her classroom and hide in the corner to observe.  Somehow, I stayed put and let her take her next steps towards her independence.

About that backpack?  Oh yes.  It had to go back in the closet for another day.  I’m not really sure what I was thinking.  She may be ready for it in the 4^th grade.

continued HERE