World Down syndrome Day – 2016 edition

It’s been a rough couple of years. From unemployment to starting a business, to spending sixteen excruciating days at the hospital while our son Jonathan battled a mystery illness to watching our daughter Charlotte struggle with a chronic disease, life (or if you prefer – insert another word) happened.

Outside our immediate family, we have seen close friends, neighbors and other family members suffer the shock of unexpected death as well as stage 4 cancer, traumatic brain injury, divorce, substance abuse, job loss and bankruptcy. I can see why this depressing litany may be enough to make you stop reading at this point, but please bear with me.

Please notice that none of the things that happened on that life (or if you prefer – insert another word) list included or came about because of Down syndrome. In our family, when we make a list of blessings and burdens, Down syndrome always makes the blessings list. Yet most people, when faced with the possibility of bringing a child with Down syndrome into this world put that prospect – and indeed that child – on the “insert another word” list. We know this because approximately ninety percent of women who know they are carrying a baby with Down syndrome choose to have an abortion.

The fact is most people think Down syndrome is something that can and should be prevented. Indeed, thanks to prenatal testing and abortion, Down syndrome is prevented nine out of ten times when mothers know ahead of time. Nine out of ten babies are not given the chance because of the belief that of all the things that could crop up on your “life list” at any given time, Down syndrome is definitely one that’s to be avoided. The thought is, that by not bringing that baby with the extra chromosome into the world, much emotional and physical pain and suffering will be prevented.

However, as I look over my personal “life list” from the last several years there are many things I obviously would have chosen not to be added, many things that have caused incredible pain and enormous suffering. And for those things, there was no test that could have been taken years ago to predict with certainty whether a loved one would have developed cancer, or would have collapsed suddenly and died or would have been chronically unemployed or bitterly divorced. Would I have chosen not to bring those people into the world knowing now the pain and suffering their lives have caused? Of course not. The point is, no one is immune from pain and suffering and Down syndrome does not necessarily equate with the two.

As I write this my son Jonathan is thirteen so I have had thirteen years (thirteen years, three months and twenty two weeks if we count down to the day we received the results of the amino) to get used to the fact that he was not the baby we had signed up for – not the baby we would have initially chosen to add to our list. I’m not saying his Down syndrome diagnosis didn’t first throw us into despair or that there haven’t been some tough days along the way for both he and for us as a family. But what kid doesn’t have their rough moments? What family doesn’t have their tough times? Again, all the prenatal testing in the world can’t prevent those.
A prenatal test I took in July of 2002 told me I was carrying a baby with Trisomy 21. What it didn’t tell me was that that baby would turn out to be a healthy teenager with a quick wit, infectious smile and great love for sports, dogs and music. It didn’t tell me Jonathan would be riding a bike, or skiing a mountain or learning about ancient Egypt like the rest of his class. It didn’t tell me he and my husband would attend sporting events together like many fathers and sons and that Jonathan would frequently end up on the Jumbo-tron. It didn’t tell me how much we would love him, how much he would love us or how much others would love Jonathan as well.

There were some who rationalized, if not fully encouraged, terminating the pregnancy in an attempt to try to save us from pain – to try to make sure Jonathan never made it to our “insert word here” list. Thank God we didn’t as Jonathan would not have had the opportunity to prove what a beautiful blessing he is to this often times ugly world.

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World Down Syndrome Day…in Utah!

Today is World Down Syndrome Day, the day set aside each year to celebrate all of those who are blessed with “something extra,” including my son Jonathan.  As many of you may know, our family’s world is a different one today than it was on World Down Syndrome Day one year ago.  This past summer, we moved from Georgia to Utah and Jonathan’s world of familiar friends, school, church and neighborhood was not so familiar anymore.  In the nine months since we’ve lived in Utah, Jonathan – and the rest of the family – have met new neighbors, joined a new church, met a small circle of new friends and have thankfully been blessed with a great new school.

The school component of the move was the hairiest.  We soon learned that Utah was generally less inclusive than Georgia and there were several sleepless nights of – “what have we done?”  In Georgia, Jonathan was well-adjusted, academically successful and well-liked by both students and staff.  Not that the new school wasn’t accommodating and welcoming.  It was just different.  And in those early weeks, we weren’t yet sure if different was good, bad or equal.

The differences included pull outs for Jonathan with several other children every morning for extra math and reading instruction with a special education teacher, separate from his mainstream classroom teacher. Jonathan had never been pulled out to a resource room before. He was always supported within the mainstream classroom with a full-time paraprofessional.  In his new school, Jonathan still has a para-pro, but for a much shorter part of the day.  I was somewhat skeptical at first whether this would be a good situation, but he seems to be rising to the occasion without the help of an extra pair of eyes and ears shadowing him every minute.

Academically, it is hard to argue with success.  Jonathan is working at grade level in math right now and just below grade level in reading.  It is exciting to see him take pride in his new-found reading skills and to see him read on his own now occasionally for enjoyment, just like the rest of the family.  If I had to say what has made a difference for Jonathan at these two schools,  it would be high expectations and a culture of inclusion that starts from the top down.  Like our previous principal, we have a principal here in Utah who treats Jonathan no differently than any other student.  Jonathan is expected to adhere to the school’s creed – SOAR, which stands for Be Safe, Be on time and on task, Accept responsibility and Show respect to yourself, property and others.  Despite the two school’s differences, this emphasis on responsibility and respect is quite similar and,  in my opinion, creates an atmosphere of academic success for all.

It is also thrilling to see how many of the Utah students and staff are embracing Jonathan socially.  I am amazed every morning when I drop him off how many children who aren’t in his classroom go out of their way to say, “Hi Jonathan!”  Many teachers and staff members also greet him by name.  I am comforted to know that even when big sis Charlotte heads off to middle school, Jonathan will continue on at a school that “has his back.”

Perhaps the greatest indication of how well accepted Jonathan has become here has to do with World Down Syndrome Day. Once a  week, every classroom at the school has an allotted library time.  This week, in honor of World Down Syndrome Day, the school librarian is using that allotted time to show “Deedah” to every single student.  And the real beauty of the situation?  I didn’t even have to ask her!   She decided she wanted to do this on her own!   It is with a grateful heart that I greet this day – grateful for the wonderful support our family has always had in the past, grateful for the incredible support we have in the present, and optimistic for a future filled with many more World Down Syndrome Days – days set aside to appreciate the blessings of that extra chromosome.

***

Speaking of Deedah, it will be shown at the Herriman Library at 5:15 PM and 6:00 PM on 3.21.12.  Rumor is that the stars will be at the showing!  We hope you can all make it.

 

Posted in Deedah, Deedah DVD, Jonathan | 3 Comments

Update from Salt Lake City

I’ll say it again, we are the world’s worst bloggers.

Almost a year ago–Valentine’s day–to be exact, I started work in Salt Lake City.  I moved here last March and Brooke and kids followed in June.  We ended up buying a house in Draper with an incredible view of the valley.  We watch incredible sunsets every evening from our windows and decks.  Brooke says she feels like she is on vacation living here.

Looking North along the Wastach Range from our back deck

 

 

Looking West

The kids ended up in a great elementary school.  Charlotte is in a gifted class and is being somewhat challenged.  We found what others have found out upon moving to Utah. The curriculum here is about a year behind schools in other parts of the country.

Jonathan is in a mainstream 2nd grade classroom.  We lucked out again and ended up with a principal, teachers and resource teachers who really support Jonathan.  He continues to thrive.  Hopefully I can convince Brooke to blog about the details.

We don’t have the playmate paradise that we had in Savannah where there were 10 kids on the street to play with, but the kids are adjusting OK.  Savannah was an incredibly social place; Utah is a less so.

Summer was wonderful.  Within walking distance–and mountain biking distance–is Corner Canyon, a city preserve with streams, waterfalls and miles of trails.  I bought a mountain bike and lost 15 lbs over the summer.

Ghost Falls in Corner Canyon

Dry, no bugs, and the cool mountains just 20 minutes away.  We frequently escaped up Little Cottonwood Canyon to Snowbird and Alta, and around the other side to Park City.   Mom and several of my siblings came for a visit.  All were amazed at how close the mountains are to the city.

Alta in the late summer. It took a long time for the record snow to melt this year.

 

"This is some sick terrain!"

The kids have started skiing.  The local parks and rec have a ski school program where kids are picked up from school on Friday and are taken up to Snowbird for a two-hour lesson.  Charlotte has caught the bug big time despite a hand injury–another kid skied over her hand. Ouch!  Jonathan likes it but hasn’t yet caught that adrenaline rush that keeps you coming back.  It will happen.

The Deedah DVD continues to sell despite our best efforts to make it hard to find.  I finally updated this links on this site that take you to the correct page at the Down Syndrome Footprint site.  The DSF site now allows reviews.  Can I ask you to go there and leave a review for Deedah?  You have to register with DSF, but some reviews of the DVD will really help to spread the awareness.  Thanks!

Well, we’re back.  There has been a lot of exciting things that have happened for us in the past year.  We’ll try to fill in the blanks.  Hope all of you are doing well.

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What’s going on?

Wow, we have turned into lame bloggers.  You are probably thinking we just dropped off the face of the earth, and in some ways we have.  We have been wicked busy, but it’s all good.

We are very excited that Deedah has been accepted to the Sprout Film Festival.  Deedah will be shown at the Metropolitan Museum of Art in Manhattan on April 30th.  The Sprout Film Festival features films by, about, or including individuals with developmental disabilities.  One of the neat things about this festival is that they take it on the road, so there is a good chance it will come to your city.  We’ll watch and let you know where it is going next.

And, yes, we will be in NYC for the festival!

***

Deedah was put into the conference packages at the Techniques for Success- 2011 Conference in Gaithersburg, Maryland.  This conference was sponsored by F.R.I.E.N.D.S and the Down Syndrome Network of Montgomery County.  A huge thanks to Katie Routzahn, fellow parent of a child with Down syndrome, for proposing the inclusion of Deedah in the conference.

***

The transition to Salt Lake City is going well.  The new role is great; full of challenges.  The company has the best culture I have ever worked within.  I am truly blessed to have landed there.  If you are working for a company that are not happy with, I encourage you to look around.  There are companies out there that are growing, are interested in your development, and are looking for good people.  Life is too short to be stuck.

***

The house in Savannah is under contract and will close at the end of May.  We bought near the peak of the market four years ago, but with a lot of sweat equity, we were able to avoid a big loss.

Brooke and the kids are coming out to SLC this Wednesday to zero in on schools and a house.  We have decided on the Canyons school district based on the good experiences of some other mom’s who have children with Ds.  We will end up in Sandy or Draper most likely.  The SLC market is down quite a bit so there are some great deals to be had.  We will also get to meet some of the families in SLC who have children with Ds.  They have been very helpful and supportive as we have planned our move.

***

Brooke has been uber-busy with planning of the 2nd Annual Night of Champions.  This is an event Brooke started last year in Savannah to celebrate people with developmental disabilities who are working real jobs, and to honor their employers for giving these people opportunity.  Last year, the N of C event exceeded all expectations with 320 in attendance to honor seven recipients.    This year’s event will be held at the Savannah Hyatt on Bay Street on June 9th.  Local celebrity and son of Paula Deen, Jamie Deen, will be the MC this year.

I predict three things about this event:  it will continue in Savannah after we have moved on, that there will be a similar event in SLC before too long, and that this will become an event that other cities fire up.

***

As we prepare to move, Brooke has been shooting a lot of video.  Rumor has it there is another film in the works.  Dare I say, Dee-quel?

***

Thanks for your patience with us.  we’ll get back in posting mode again when things settle down.

 

 

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Vote for Deedah!

We posted “My Great Story” at the National Down Syndrome Society web page here.

Please visit the NDSS site and vote for our story. If we get enough votes, Deedah will be featured in an upcoming NDSS publication.

***

Sorry we haven’t posted much lately. Brooke is very busy planning Night of Champions, a Savannah event where employees with disabilities and their employers are honored. I’m busy with the new job in Salt Lake City. All is well with the family.

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Happy World Down Syndrome Day!

Phil, Charlotte, Jonathan and I want to wish you all a Happy World Down Syndrome Day!

Today is March 21st , the day set aside in countries all around the globe to celebrate those with Down syndrome.   Why was this date chosen?  Well, most people have 46 chromosomes in each cell of their bodies.  People with Down syndrome have 47, with an extra, or third chromosome,  on the 21st pair.  That’s why Down syndrome is also known as Trisomy 21,  and the date to celebrate Down syndrome awareness was chosen to reflect this trisomy  – (3/21 – March 21 :-))

According to the World Down Syndrome Day website, “the aims of World Down Syndrome Day are to promote awareness and understanding, seek international support and achieve dignity, equal rights and a better life for people with Down syndrome everywhere.”

Can’t think of a better way to spend a day :-)!

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Since last week, and a love letter

Last Monday, I started my new job in Salt Lake City.  I flew out there on Sunday, worked all week and flew back to Savannah on Friday afternoon.  (For those who hadn’t heard, my role here in Savannah was eliminated in January.  I was out of work exactly one month.)  I can’t beleive how blessed I am to find work so quickly, to find a role that is actually a step up in accountability, to be able to return to my beloved Rocky Mountains, and to land at such a good company (England Logistics).  You have to love a company that openly proclaims that their passion is “enabling and watching their people grow.”  (I’m pinching myself.)

***

On Saturday, I drove to Hilton Head with neighbor (Cap’n) Steve where we crewed for a sailboat race from Hilton Head back to the Savannah Yacht Club.  A beautiful day, but so light on wind that the race was scratched and we ended up motoring most of the way down.  Thank you to Brooke for letting me play away after being away all week.  That’s love.

***

For Sale:  Movie Set.

We are selling our house to move to Salt Lake City.  If you know anyone in the Savannah area looking to move into Olde Towne, please forward this link to them.  This is such a great spot to raise children.  We have THE BEST neighbors.

***

On Sunday, we had to get out of the house as there were a couple of showings.  Jonathan wanted to go to the play “Wizard of Oz” while Charlotte and I did not, so we split up.

It was such a beautiful day and there was nothing to do, so we went downtown to walk around.  We parked at Monterrey Square (the square where the story Midnight in the Garden of Good and Evil is centered) and headed up Bull St. toward the Savannah River.  It was so nice to spend a lazy day with my beautiful daughter on such a beautiful day in such a beautiful city.  I will miss Savannah very much.

Bull and Jones. When I win the lottery, I will buy a house on Jones St.

Brilliant sun

SCAD Student Art Gallery. Art is everywhere!

fashionista Charlotte with her new boots in the Shop SCAD gallery.

General James Oglethorpe through the live oak.

General Oglethorpe facing South to protect Savannah from the Spanish in Florida

Church of Scotland steeple

Church of Scotland

Still a few more blocks to the City Hall at Bay and Bull

A quick stop in B&D Burgers for a “beer to go.”  When Jonathan and I go on a Daddy date, this is where we inevitably end up.  Because, according to Jonathan, “all the ladies know me there.”  Ran into Catherine (Jonathan’s girlfriend and my favorite bartender) on the way her way home.  We are gonna miss you!

Everybody is happy

The blooms are just starting to come out.

Paula Dean's restaurant "The Lady & Sons"

Charlotte seeing if Johnny Mercer's shoes are bigger (they are.)

City Market

City Hall on Bay Street

The steep stairs leading down to River Street

Looking up river. Just missed the ship.

Looking down river. The Convention center and the Westin on Hutchinson Island.

Killing time waiting for the water ferry.

Late afternoon sun on River Street

River Street from the ferry.

Factor's Row. This is where cotton was traded. The cobbles were used as ballast on cotton ships.

What to do.... (Johnson Square)

Chippewa Square. This is where Forest Gump waited for the bus.

More early blooms

Deedah can not resist Golden Retriever Puppies

Six Pence Pub. From the movie "Something to talk about" with Julia Roberts.

End of the day

Charlotte and I had a great day.  She wasn’t real hot on the idea of walking around downtown, but in the end she said “this is the best day ever…except for Disney world.”   Oh, well.  I don’t feel too bad taking second place.

I will really miss Savannah.  If you haven’t been here, put it on your bucket list.  There is no more welcoming place on earth.  And if you have the opportunity to spend it with your favorite daughter, all the better.

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Yes, its true

A few weeks ago, Charlotte was pestering me about taking her girl scout cookie order sheet to work.  I generally shy away from that because I think its obnoxious for the boss to bring anything that makes the staff feel obligated, and besides, it’s Charlotte’s job to do.

That morning, she was exceptionally persistent.  I couldn’t lie to her and so I told her the truth: “I can’t bring them to work, because I don’t have a job.”

She was very upset, no doubt imagining the worst possible outcome.  I assured her that we would be OK.  We have severance, and we saved a lot of money, etc…  By the time she came home from school, she was fine.

Well, it’s been a whirlwind since.  I was contacted almost immediately by a person in Salt Lake City who has wanted me to join his company.  After some phone calls, some interviews, and some negotiating, I have a job again and will start on Monday the 14th (Happy Valentine’s day!)

Charlotte was thrilled when I told her I had a job, even though it requires a move.  We told her she has to learn how to ski.  She replied, “Good, I don’t have to take surfing lessons!”  (As soon as the kids were old enough, I was planning to to put this in surf camp out at Tybee Island.  Not sure why she was not looking forward to that, but at least she is looking forward to ski lessons.)

***

In the movie The Fox and Hound, there comes a point where the fox needs to move away from the family of hounds.  Jonathan’s first grade class was watching the Disney classic last week, and when it came to that emotionally climatic point, Jonathan ran to the class corner crying.  He explained to the teacher that he was going to move and he was going to miss all his friends in Savannah.

Heartbreaking.

***

We held Jonathan’s IEP yesterday.  I usually hate these as they are undeniable reminders that Jonathan is behind his peers, something I don’t really think about on a daily basis.  But, this one was different.  Jonathan is doing so well.  He is certainly behind in some areas but he is showing so much progress in readin’, ‘ritin’, and ‘rithmitic that you can’t help but celebrate.

To Jonathan’s team of teachers and therapists: you are the greatest!  We are so blessed to have you working with Jonathan.  It might not be too late you arrange for you to move as part of my relocation benefit.

Please leave a comment if you are from the SLC area and can help guide us to certain schools, neighborhoods.  Jonathan is thriving in full inclusion with a para-pro helping and we are hoping to put the same formula in place there.

***

Sorry for not blogging and letting you know what’s been going on with Jonathan and Deedah.  We had such an October with Buddy Walk and all, that we took a deep breath and fell out of the habit of blogging.  December was packed with parties and friends–too busy.  Then the whole job change thing…  excuses, excuses.   We promise to keep you up to date as we go through our next big adventure.

We are nervous about the move.  Brooke and I have both lived out West–we met in Reno.  We are looking forward to the skiing and camping and wide open spaces.  (I keep threatening to buy Wranglers and dust off my cowboy boots–Brooke hates that!  It’s gonna happen.)

This is the first time we have moved with the kids while they are at an age where they have some hooks.  They were so young when we moved to Savannah that it was no big deal.  It helped immensely that Savannah is such a welcoming place and the neighborhood was packed with kids.  Salt Lake City is known to be a great place to raise a family, but there is no denying it is a different culture.

We are now swamped with the chores required to get the house ready to show.  We took down the “wall of fame” today to prepare for painting.  (You might recall that this is where the Deedah film starts, with the kids looking at the pictures.)  It is all a bit surreal.

That hair defies gravity!

Sorry, but if you are hanging on the wall, people will be so distracted by your cuteness that they will forget they are here to buy the house!
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Merry Christmas

Can’t believe it’s been almost three week s since our last blog post!   Between Jonathan’s birthday, the school Christmas play, the church Christmas pageant, the Nutcracker (which unfortunately was not to be for Charlotte since she sprained her ankle during one of her final rehearsals :-(), and Phil’s and my annual Bad Christmas Sweater Party :-), seems there’s been precious little downtime.

Jonathan's Birthday party

Charlotte in the school Christmas play

Charlotte as Lucy in the church pagent "Charlie Brown Christmas"

Charlotte in Nutcracker Party-Boy outfit…and bum ankle

Bad sweaters = good times

So here we are, Christmas morning, and – “IT’S A CHRISTMAS MIRACLE!” I actually feel somewhat calm and organized and able to sit down and reflect on an amazing year.

From the bottom of our hearts in the May household, we cannot thank you all of you enough for supporting Deedah this year!  Because of your support, Deedah has been shown throughout the country in school classrooms, PTA meetings, in front of medical students, has been screened at the National Down Syndrome Congress, film festivals and at numerous Down Syndrome Support Group meetings and at Buddy Walks. It has made its way into new parent packets.  It has also won an “Indy” – an award for excellence in independent film making!  We are so excited that it is gaining traction, not only in the Down syndrome community, but in society at large.  We are so grateful for every opportunity to expose the film – not only to those who have a connection with a person with Down syndrome, but also to those who don’t.   We are also grateful for all the creativity, energy and passion many of you have put into getting Deedah “out there.”  And we are humbled by the numerous kind words we have received throughout the year – can’t tell you how often I have read your comments and emails and have sat down at my laptop and cried, (happy tears :-)!)  –  so touched that you have been touched by our little family film project.

As I wrap up this amazing year, I am struck by an image that could not be more pertinent during the Christmas season.  It is a 16th century Flemish painting depicting the birth of Jesus.  Among the figures in the painting are an angel and a shepherd who appear to have Down syndrome.  The first time I saw the painting online I was blown away.  (And in September, I tried, but was unfortunately unsuccessful, in seeing the painting in person when I went to the Metropolitan Museum of Art in New York City – seeing that painting in person is still on my Bucket List :-).)

To me, the painting speaks of an era where people with Down syndrome were possibly fully accepted and included. Sure angels and shepherds were on hand for Christ’s birth – but check it out – there were even shepherds and angels with DOWN SYNDROME on hand for His birth! The shepherd is right next to Mary.  Could it be that in 1515, being a shepherd with Down syndrome was no big deal?  Or could it be that people (and angels) with Down syndrome were not only accepted, but revered back then – to the point where you couldn’t accurately depict the manger scene without including them?   Or does the painting just accurately depict societal numbers back then – that in every gathering of a certain number of people, at least one or two of them would have Down syndrome?  Could it be that in 1515, they had it more together in terms of inclusion that we do now in 2010?

So as we celebrate Christmas 2010, I have a wish – a wish that all of those with “something extra” will receive something extra under the tree – the gift of friendship, understanding, acceptance and peace.  And for those of you who do not have that extra chromosome, I wish that for you as well.

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Happy Birthday, Jonathan

Eight years ago today, in this season of Advent, Phil, Charlotte and I were blessed with the greatest Christmas present imaginable – the gift of a wonderful son and a sweet baby brother.

Happy Birthday, Dear Jonathan!

You make us smile, you make us laugh and you make us think – about possibilities and promise; about trials and triumphs; and about life and love.

You have taught us much in your eight years – that given the same chances and expectations as other kids you will rise to the occasion; that you are not to be spoiled or coddled or pitied; that your potential is as limitless as any child who doesn’t have Down syndrome; that – just like any other child – you have your own unique personality and talents and dreams and shortcomings; and that above all else, you are a blessing and not a burden.

You are, in fact, many of the things that society may not perceive you to be.  But my dear Jonathan, we are working on that.  My birthday wish for you is that you will live to see the day when you are judged – to paraphrase Martin Luther King, Jr. – by the content of your character – that society will see beyond the “disability” and get to know the real person who inhabits the stereotypical exterior.

Jonathan, I am proud of you for many reasons.  You are smart, you are funny, you are determined and you are a wonderful son.  But most of all, you are a normal boy – a normal boy who just so happens to have one extra “abnormal” chromosome.

Happy Birthday!  Love, Mom

Best Birthday EVER! Lego Star Wars for Wii!!!!!!!!!!

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