Tools from PDE Conference

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

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

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

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

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

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

  

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

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

More on the R Word Campaign, 5th Anniversary

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

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

For the complete article, visit HERE

Take the pledge today www.r-word.org

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

Keep Spreading the Word

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

Sanctuary

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

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

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

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

*kids building

 

  

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

*3 year olds classroom & weekday preschool

 

*2nd grade

*hallways

 

*kindergarten

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

*Inside the smaller Chapel

  

*original Tiffany stained glass

 

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

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

*new church sanctuary

    

*from the left balcony

 

 

*back of sanctuary, choir and organ balcony

 

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

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.

2nd Annual Ugly Holiday Sweater Party

In case you hadn’t noticed, I love a good party.  Especially a party with a theme.  Sure, it’s a pain to prepare, but being with fabulous people having a great time is well worth the work.

No matter how many people attend our parties, we always end up congregating in the kitchen. We hosted our 2nd annual ugly sweater party and this year and added the option of ugly hats.  We take this VERY seriously.  Many think it’s easy to find a tacky sweater but believe you me, it is always a hunt.  I found mine this year at Blain’s Farm and Fleet in Iowa.  We ordered Mark’s wool Cosby Sweater from an Etsy shop (warning, strong language in link, click HERE).  The tag says it was made in Yugoslavia for goodness sake. 

When I say we take it seriously, I mean seriously.  For the second year in a row we ordered a trophy for the winner.  Mrs. Mara Sears was the 2011 winner.  I am thinking of getting a plaque that records the names of winners from year to year.

Last year we had the party at our house complete with everyone’s kiddos.  This year we started at our house with just adults for a couple of drinks and hors d’ oeuvres and after a while we moved on to an Irish pub near by.  Our guests would have been happy to stay at the house but this mama wanted a night out and it gave the other parents a good reason to get a sitter and let loose a little.  Before we could leave, the ballots had to be cast.

Then off we went.  Without kids.  Just adults.  Having adult conversations.

More friends joined us at the pub and we took control of the jukebox.  When I actually take a moment to sit back and let it in, the blessings we have received in our new city and the connections we have made, it is overwhelming.  It was a top night.

p.s. Mark had an excuse to wear the Bowler hat he bought in New Orleans, which made him very happy.

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!