Deedah and me

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.

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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.

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.

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!

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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.

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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.

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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.

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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.

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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?

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