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

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.

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.

Feeding School

Sometimes kids don’t eat.  I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?)  I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills.  Some kids require being fed through a g-tube.  Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day.

Sophie and Alexander both eat a small variety of crackers and chips.  Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers.  Alexander prefers BBQ Pringles.  They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up.  Cold drinks bother him.  They also both refuse nearly all fruits, vegetables, and meats.  The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats.  We call them squeezies.  Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off.  He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny.

Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012.  Yada yada yada, it’s now August 2013.  Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie.  She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6.  For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program.  We hope that Sophie can learn to eat and that we can learn how to help Alexander as well. 

Sophie is allowed only 4 ounces of chocolate milk in the morning at home.  Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror.  During week 4 Mark and I will begin training to feed her ourselves.  In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids.  The plan is extremely regimented, time consuming, and exhausting.  It is also extremely successful.

Tuesday was Day 1.  The lead feeding therapist (we’ll call him P.)  and I observed as Mark attempted to feed Sophie.  This gave P. an insight into her food avoidance behaviors.  The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam.  Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital.  Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students.

On Day 2 P.  introduced the rules to Sophie, which are pretty simple.  Eat your bite = get to play with your preferred toys and receive praise.  Don’t eat = you will be helped to eat.  Keep rejecting food = no play.  There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first.  If noncompliance continues, then they might use hand over hand to get the food in.  If that doesn’t work, then blocking her hands or even techniques to open her mouth may be used.  All of these techniques are discussed with us before they are implemented.  It is hard work for our little girl.

Her meals consist of a few different foods that are in Styrofoam cups off to the side of the therapist.  She is presented only one bite at a time so that she is not overwhelmed by the sight of the entire meal.  Sometimes the spoon or fork will have food on it and presented on a plate.  This minimizes the work she has to do so she can focus on eating.  Other times she must get the bite from the plate to the utensil herself.  A lot goes into good wrist movement, hand control, and coordination.  Sophie still struggles with this. 

For the first few days Sophie was presented her preferred foods.  She was given her favorite toys and bubbles when she complied.  This allowed the therapists to earn her trust.  Then, slowly, food she used to eat but has lately refused (such as macaroni and cheese & hotdogs) were added.  To our shock and great happiness, she complied easily.  Today is the last day of week 1 and my first day alone with her without Mark.  He prefers to drive into the city despite the heavy traffic.  I prefer the trains, so off we went!  I appreciated so much the kindness of strangers who held doors, carried our bags, and engaged her in conversations. 

At her first feeding P. introduced bananas, which is something she has NEVER eaten.  She ate the first bite and I fell off my chair.  Then it got real.

These are only a few of Soph’s avoidance techniques.

She successfully avoided or spit out pieces of banana many times during meals 1-2.  The bites got smaller and smaller and P. mushed them up to the consistency of pudding to make it as easy to eat as possible.  The first time he took her toys away she did not cry, but she was shocked.  She didn’t say a word but she looked at him as if to say, “What the heck is going on here?”  At this point, if a bite got in regardless if she spit it out, she was praised and the spitting was ignored.

Using her IEP as a guide, Sophie will have two hours of OT/week.  I watched this morning as the OT sprayed shaving cream over a foam alphabet.  As I could have predicted, when presented with it, Soph flipped it over.  She does NOT like getting her hands dirty.  They moved from the picnic table to the floor and tried again.  Sophie resisted at first but eventually used her fingers to push out the messy letters, one by one.  Her OT is challenging her to work through her sensory issues.

By her last meal with a therapist for the week, Soph showed remarkable improvement towards accepting the first new food.  As the bites of banana went in easily, they got bigger and bigger.

The first bite (above) was banana.  Her only trouble was handling the spoon.  SHE’S EATING BANANA!!!  This was followed by play and a bite of mac-n-cheese.  We are exhausted and happy.

Making a Difference Award

The following is the text of the Delaware County Right to Education Task Force nomination for a Making a Difference Award that I submitted for Sophie’s friend Eliza.  The Making a Difference Award recognizes staff members and students who have gone out of their way through their work, support, or friendship to be accepting, understanding and make sure to include children of all abilities. 

“My daughter Sophie, who is in kindergarten at XXXX Elementary, happens to have a developmental disability. Her placement is in the regular kindergarten classroom with supports and services pushed into the class. As excited as we were about our daughter going to school, we were also nervous. Would she be happy? Would she make friends? On the first day we instructed her brother Alexander, who is in the 2^nd grade, to sit next to her on the bus so that she wouldn’t be alone. He held her hand and the two of them got on the bus together.

From day one Sophie and Eliza became friends. Eliza is a fellow kindergarten student who does not have a disability. I have watched how naturally this friendship developed into something really special and ordinary at the same time. Parents of children with a disability can relate that the most basic experiences of life don’t always come easily for our children. Having a true friendship is something we dream of for our kids, but often fear that it might not happen. 

Our first clue that kindergarten was going to be ok was during the first week of school. As Alexander and Sophie boarded the bus together, we noticed a group of her peers sitting in the front seat next to Sophie’s safety seat. They were excited to see her and clamored over which one of them would get to sit next to her. The same thing happened shortly afterwards when Sophie arrived at Back to School Night. We watched as Sophie ran off with her peers, leaving us behind. It became routine and was apparent that these friends were in it for the long haul.  Every day they are excited to sit with her on the bus.

Eliza, in particular, has a special friendship with Sophie that I’ve been blessed to quietly witness. On the many days that Sophie has stayed home sick this school year, as we said good-bye to Alexander on the bus Eliza was visibly disappointed and asked about her friend. In class, Eliza and Sophie are frequently together. They often sit close during story time and next to each other at the tables during projects. When it is time to put materials away, Eliza gently guides Sophie to their cubbies as they scamper off to the next lesson. During one lesson, the children were to draw a picture and write a story. Sophie worked with her aid while Eliza sat next to her. Eliza drew a picture and wrote about the two of them playing together. This friendship extends outside of school as well. When the girls are at a birthday party, for example, they play together beautifully.

Eliza is a beautiful child. She accepts Sophie and understands her in a way that I as her mother or the professionals that work with Sophie can only strive to see her. Eliza does not see through a lens of ‘disability.’ She does not care that Sophie has a very limited vocabulary and learns differently. She knows nothing of IEPs, social goals, or modified curriculums and yet she can teach us all about inclusion because it has come naturally for her. She has no idea that her love of my daughter has been a dream realized. She’s a little girl who loves her friend. How amazing and how ordinary.”

I’m thrilled to share that Eliza won!  The banquet took place this week and it was a beautiful event.  Our family joined with Eliza, her parents, two bothers, 3 grandparents (who travelled to get here), and Eliza’s former pre-K teacher.  The girls were glued together and when it came time for them to go on stage, for Eliza to accept her award, and for them to pose for a photo, they both did great!

This is a special and unexpected friendship that we will treasure always.  Although I had begun to imagine watching the girls grow up together, her father has finished his residency and accepted a position in another state.  They will move away this summer but will never be forgotten.  Many tears were shed that night and not all of them were mine.  Eliza is a beautiful girl who comes from an amazing family and we are blessed to know them.

Our New/Old Normal, part 1

Our son Alexander is eight years old and he was just diagnosed with Asperger’s Syndrome.  Many shorten it to Asperger’s or AS.  Read about it HERE. 

Hind sight being 20/20, it seems perfectly obvious that Alexander has likely had Asperger’s his whole life.  Mark and I have spent a lot of time combing through memories of our son with a new lens and saying, ah ha! over and over again.  I’ve been playing the game Asperger’s or Alexander?  Is his demand for peanut butter sandwiches on wheat bread with the crusts cut off served for two meals a day a result of Asperger’s or is it just a preference?  What about this preference or that behavior?  I’ve started a list that is quite long.  I don’t know why but I suppose it has something to do with my own understanding and acceptance of this new/old normal. 

We are experts on Asperger’s and yet we know nothing about it.  I think it’s safe to say that about the specialists as well.  Looking back I can recall incidences at a very young age that point to Asperger’s.  Alexander’s food restrictions began as a toddler.  One night rather than eat one bite of a vegetable, he waited us out and eventually fell asleep under the table.  As we carried him to bed for the night I was so frustrated with my stubborn son.  I realize now that this wasn’t him being stubborn.  This would become our pattern.  Alexander would or would not do something and I would be frustrated with his stubbornness.  So it is a relief to finally be given a tool with which to understand my child in a way that I could not prior to this diagnosis.  Relief, however wasn’t my initial reaction, but I’ll get to that.

Looking back there were signs all along.  Even in preschool he had difficulty interacting with his peers.  He has friends now, but not many close ones and still prefers to be at home entertaining himself.  His lagging social skills is why we enrolled him in Cub Scouts this year. 

He and his father have spent countless hours learning about trains and the railroad, an obsession that we assumed Mark passed down from his own childhood.  As a family we all got into trains and have enjoyed this hobby immensely.  As the years went on Alexander has had other intense interests.  He loves and has an encyclopedic knowledge of the Titanic.  This has led to an interest in ships and when he pretend plays it is usually about something real, like the sinking of Poseidon.  He talks incessantly about whatever his interests are (currently Minecraft and Godzilla), but who doesn’t talk about subjects that get their juices flowing? 

His vocabulary has pretty much always been advanced, which we attributed to his obvious brilliance and the fact that we never have used baby talk with our kids.  Although he had memorized Green Eggs and Ham by age 3.5 HERE, he struggled with reading comprehension and received extra help in kindergarten through first grade.  Writing has always been a struggle and I had inquired about dyslexia early on.  Instead of a diagnosis, he started occupational therapy for poor fine motor skills and a possible processing delay.  He is an artist and if he’s not on the computer or iPad you can often find him drawing about his current obsession, which we attributed to the many artists in the family. 

Just over a year ago he began an odd speech pattern where he breaks words up with a pause on the vowel.  For example he might say bo(pause)oat for boat or do-og for dog.  It comes and goes and sometimes is so strong that you can’t understand him.  We brought it to the attention of the school, who didn’t see it, until they did, so he started speech therapy.

A social skills program began in December and Alexander was invited to join.  He spent six lunch periods with other 2nd graders who were seen as lagging behind socially to play games.  The kids just thought it was something fun to do and he was upset when it was over.  He was getting upset more and more and it began to cause us great concern.  Homework that should take 20 minutes would last at least an hour and would include meltdowns of epic proportions every.single.day.  We know he’s smart so we got frustrated with him for not hunkering down and getting it done.

The odd speech pattern became more prevalent.  The meltdowns increased to nightly at bedtime, because bedtime means that when he wakes up he has to go to school.  He really does not want to go to school.  Waking him up leads to a daily meltdown as it means he has to go to school.  Breakfast leads to a meltdown and the need to remind him 60-70 times to eat.  He struggles with following through with simple directions such as; go upstairs, change your clothes (which we lay out or he would end up in a sweater with shorts or some other odd combination), remember to change your socks AND underwear this time, brush your teeth and come back down.  On most days he can remember 1 or two of those steps and we have to send him back up and often fix his miss buttoned or backwards shirts, unzipped flys, missing socks, or unbrushed teeth.  He always responds with a meltdown and says he forgot.  So we get frustrated at his stubbornness and inattention.

With the addition of ST to OT and perceived social skills deficits he received a 504 plan and a SRT or Student Resource Team.  I knew something more was going on, so I did some research, decided he had dysgraphia or ADHD and insisted on a team meeting.  Note:  don’t say dysgraphia to a team unless you want everyone to freak out.  Yet finally they decided to listen and investigate further.  This is how the school psychologist began an intensive series of evaluations.

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/

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

Prayers for Alex & Sophie

Meet our good buddies Nancy and little Alex.  I met Nancy within the first couple of weeks of moving out here and we have become great friends.  On Thursday, January 3, 2013 Alex will be having his tonsils and adenoids removed, otherwise known as T&A surgery.  It is fairly common for people with Down syndrome to have T&A surgery and many in our community have reported excellent results.  Alex has been having seizures recently and is on medication to treat them.  His mama hopes that the T&A surgery will mean he can get more oxygen as he is breathing so he can stop taking the medicine.  Alex will also have surgery on one of his testicles.

Nancy and I did not plan it this way, but on the very same day, Sophie will also be having T&A surgery and she will be getting a new set of tubes in her ears.  Especially as she has floppy airways (tracheomalacia and laryngomalacia), her Anesthesiologist has back up plans ready to go if her airways become compromised.  We have high hopes for this tune up.  With new tubes, the fluid that has built up can drain which should lead to better hearing and improved speech.  Once the tonsils and adenoids are gone, we hope she will be much healthier and able to fight off viruses that lead to infections.  Currently she catches every cold and flu virus that she comes into contact with.  Also, Sophie is not a good eater, (understatement of the year).  We hope that as the T&A surgery will create more space in her throat, that she will start eating more foods.

*Alex is due to the hospital at 10am and Sophie at 11:15am.  They are going to be hungry as they aren’t allowed to eat after 11pm.  The surgeries are fairly routine for the good folks at CHOP.  Both little ones will be staying overnight for a minimum of one night and both with their mamas by their side.

Please send good thoughts and prayers on Thursday, January 3rd that my baby girl Sophie and our dear friend Alex have successful surgeries, good pain management, and quick recoveries.  If you could spare a thought of support for those of us in the waiting/hang wringing room, we would appreciate it.

A Friend You Haven’t Met Yet

Sophie was sent home from school early on Monday.  She had put her head down at lunch and cried, refusing to eat.  She had a low grade fever, was not herself, and most strangely was unable to walk normally.  After a nap at home, Sophie was still unable to walk or bare weight without pain, so I took her to her pediatrician.  He sent us to the ER for x-rays and blood work.  The diagnosis was that a virus had settled into her right hip joint, causing inflammation and pain.

Skip ahead a few days.  She has not been able to shake her fever, is still in pain, and has begun to refuse food and drink.  So on day 4 of this illness, we returned to the pediatrician who sent us back to the ER for more testing and an IV of fluid.

We’ve been here for hours and are finally waiting for discharge.  Her blood work looks good.  The rapid strep test was negative, and the IV of fluid perked her right up.  She’s eating goldfish crackers and drinking a little chocolate milk.  They put in a catheter to test for a UTI which was also negative.  She was just dehydrated, which we knew.

Mark and I are here while Alexander and Helena have a party with our friends.  They think it’s a party anyway.  Knowing that we would end up in the ER, I packed plenty of books, toys, and the iPad to keep Sophie occupied.  I brought my laptop and have gotten a bit of work done and Mark is grading papers.  You do what you need to do to pass the time.

While skimming fb, I came across this video by John Franklin Stephens, who goes by Frank.  He’s a hero of ours and you can find another letter he wrote on the sidebar of this blog.  Frank has a way with words.  He speaks eloquently as a self advocate who will not back down to bullies who use hate speech to belittle people with intellectual disabilities.  He does so in a way that is inspiring, powerful, thought provoking, and compassionate, even to those who disregard him.  Though I won’t give the person he is speaking to a moment of my time, I am honored to share Frank’s words as he educates us about the kind of people we should all strive to be.

Thank you Frank for standing up for yourself, for Sophie and all of our friends in this beautiful community.  And with that, this family is busting out of this joint!

The Great Pumpkin

To get us excited for our visit to the pumpkin patch, we watched the Great Pumpkin Charlie Brown for the first time this year and in the morning we met our friends to drink in autumn’s splendor. 

The family farm is a lovely place complete with a hay bale maze, corn maze, pumpkin patch, and tractor pulled hayride.

While we were there Sophie found some of her friends from kindergarten and the 1st grade and they ran off through the maze laughing and chasing each other.  One of the moms stopped to introduce herself and her family.  She had heard about the letter we sent home on the first day of school as her daughter is in a different kindergarten class.  This was the letter that introduced Sophie to her peers and to talk about Down syndrome (click HERE for the letter).  She shared that the parents have all been talking about the letter and love it.  She had gotten a copy because she wanted to show it to her own mother.  It meant so much to them because she has a brother with Down syndrome.  I hope I never get used to these wonderful surprises and little threads that link us all together.

Helena may be the size of a 5 year old, but she really is 3.  She kept getting stuck in this dead end of the maze and would get so mad.  It was hard not to chuckle.

As an aside, would you look at the bone structure on this gorgeous girl? We are in big trouble when she gets older. We could not have asked for a more picturesque day.

Sharing the fun with the K family made it all the more special.  Plus, thanks to Klara who snuggled me up, I got my baby fix, which will hold me for a while.

Sophie’s shirt says, Don’t Mess With Perfection.  Don’t you agree?

We finished the day with naps, a little football and my favorite tv show The Walking Dead (after the kids went to bed of course).  So much of our lives are hectic and stressful.  Days like this fill us up.