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.


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3 Responses to World Down Syndrome Day…in Utah!

  1. Artsysue says:

    I’m so happy for you and for Jonathan. My school district is refusing to include my son in a typical classroom past kindergarten. They say they are the experts and they know what is best for him. I would have also been skeptical about the pull-outs and you must have exhibited great patience – I know it was probably not as easy as you just made it sound :). I’m so glad it is working though! My fight has only just begun.

  2. Jennie Carlston says:

    Although I have not met Jonathan yet, my daughter Lili has. She goes to Sunrise with him. Everyday she comes home with a new story about her friend Jonathan. Lili is in 6th grade and during recess plays with Jonathan. Lili has a hard time with other kids and some days prefers to play with herself or hang out with Cyndi, the aide. She started playing with him one day because he was playing alone. She figured since they both were alone that they could talk and run around together, and now they are friends. She adores him and looks after him when the older boys are around. I only wish she cared for her brother as much as she cares for Jonathon.

  3. Seale says:

    So happy to hear that transition has gone well! That being said we all still miss Jonathan and Deedah and the whole family. A few weeks ago I met a 4 year old with Down Syndrome at a Park with my kids. It warmed my heart for two reasons, first she reminded me of a female 4 year old Jonathan and second my two children never batted an eye, asked a question or left her out. It was a beautiful thing to watch. Come visit us in Savannah soon.

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