The Down Syndrome Centerat Hope Haven

Children’s Clinic and Family Center

Amie M. Coxamiecox@knights.ucf.edu

April 20, 2010EEX 4070

The Down Syndrome Center

The Down Syndrome Center at Hope Haven Children's Clinic and Family Center focuses on the cognitive/educational development of this population, from pre-natal through 18 years of age. We provide a unique strength-based team assessment, looking at the child’s potentials in all developmental areas, making sure there are no emerging issues that will interfere with his/her ability to maximize learning potential at any stage of growth. Recommendations for incorporating the child's identified strengths in the current classroom setting, as well as in the home, are made, and an extensive written report is generated and mailed to the parent.

About MeAbout me? That's not a question thatI often answer. I'm a mother of twowonderful boys that definitely keepme on my toes and my days verybusy. I have a wonderful andextremely supportive husband that Iwouldn't trade for anything, evenwhen he does make me angry. I lovemaking memories through the lens ofmy camera and keeping photographyas my passion. Laughter is somethingyou will always find in my house andsomething that will always becaptured by a photo.

How It All Began….At my previous employer, I had the opportunity to work with a wonderful man named Greg Watts. I worked for him for four years and during that time I had the opportunity to get to know him and his family quite well. Greg and his wife, Laura, have a son, Jonathan, that has Down Syndrome. Until I met Greg and Laura, I had never been around many children with Down Syndrome. So, I took the opportunity to get to know their son on a more personal basis.

Jonathan is a very special young man. He is very kind and loving, but can be shy if he doesn’t know you very well. He has a passion for music and has tons of CD’s to prove it. He collects T-shirts and has his favorites that he wears daily or on special occasions.

The ProjectWhen I first learned of the Teacher’s In Action assignment I reached out to Greg and Laura and asked if there was anything at The Down Syndrome Center that I could do to help support their cause. I met with Laura Watts and Jennifer Ancelin, a graduate student at UNF, and they asked if I would create a Facebook page to help bring awareness to their organization. I welcomed the opportunity and was very excited to help out with this project. Laura directed me to their fantastic IT guy, Bryan Westbrook, and with his help I was able to get the administrator rights to begin creating the page.

Stages of Development

Stages of Development Con’t

Official Facebook page forThe Down Syndrome Center

Personal ReflectionsHaving the opportunity to develop the Facebook page for The Down Syndrome Center provided me with a way to share my experience and provide knowledge about Down Syndrome and Autism with all of my friends.

To me, Facebook is like the pay it forward method. You post something on your page, one of your friends sees it, likes it, then posts it on their page. After they post it, one of their friends see it, likes it, and the process repeats once again. Before you know it, knowledge is spread throughout the United States all by the click of a button.

My goal for this project was to “pay it forward” about this wonderful organization. So far, it is networking rapidly. As time progresses I would love to see the page reach 500 people, then 1,000, and watch the numbers continue to rise. So, I ask all of you this. Will you “pay it forward’?

Please look up The Down Syndrome Center at Hope Haven on Facebook. Join the group. To get you started, I’ve provided the link for you below. You too, can spread the word by the click of one button!

http://www.facebook.com/pages/The-Down-Syndrome-Center-at-Hope-Haven/339151128724?ref=ts

A Mother’s Point of View

Please take the time to read the personal reflections article written by Laura Watts, M.Ed. on the next

four slides.

On May 22, 2007, my son Jonathan graduated from Sandalwood High School. He marched in to the strains of Pomp and Circumstance, student number 421in a class of 848, and sat with his peers in folding chairs on the floor of the Jacksonville Veteran’s Memorial Stadium. Dead center. No assistance. Complete with annoying tassel, roomy blue gown, uncomfortable black dress shoes and strangulating tie. And when his name was called, he walked calmly and proudly up the steps and onto the stage as 847 students suddenly stood and cheered. He turned to the audience, gave them a “two thumbs up” with the slight twist of the hips known to be his signature move and brought down the rest of the house. For a brief moment, the world stopped to recognize just one unique person.

I do not believe Jonathan’s peers cheered because he had achieved unheard of academic success. He had not. He continues to struggle with basic reading, writing and math. I do not believe they cheered because he had learned to “blend in” with his non-disabled peers. He had not. He is a whole foot shorter, speaks his own language and bops through the halls to the music in his head with a huge smile. I believe they cheered because they liked him. And they liked him because he was different.

This is Jonathan’s success story. But it is not the one we wrote for him when his life began.

Graduation : The Writing of A Success Story

By Laura Watts, M.Ed.

My husband is a financial whiz. And I am an educator. Jonathan was supposed to be the King of Academics. We brought him up on that path – early literacy, therapies, tutors, labels in the home, labels in the car, labels on our bodies. We counted everything – groceries, toys, pennies and pets. We took him everywhere, made him do everything and praised his every effort. But as he went through his preschool years, it was clear that he was different. Not just different from his neighborhood peers, but different from his peers with Down syndrome. He was one of the original participants in Hope Haven’s Individualized Computer Instruction for Children with Down Syndrome – and the only one to hate it. He did not like to listen to stories, identify letters and words, or eat sitting down. At Down Syndrome Association meetings, the child care provider assigned to him was the only one that resembled a hurricane survivor when the evening was over. His teachers tried to tell me there might be “other issues,” but I tried not to listen. Then one morning when he was six years old we found him outside in the front yard at 8 a.m. on a Saturday morning singing while sweeping (with a broom) the leaves off the lawn, dressed in sheer pantyhose pulled up to his armpits, Dad’s yard goggles and a scarf. It was clearly time to write a new success story.

Graduation : The Writing of A Success Story By Laura Watts, M.Ed.

Continued

Despite all our efforts to identify a w i n n i n g combination of medications and behavior plans, Jonathan’s school years were filled with reading and math struggles, h i g h e n e r g y learning and exhausted family members. Middle school was scary, not for him, but for us, as he battled his way through the halls with 1,600 emotionally charged typically developing pre-teens. But he loved going to school and clearly stated that his favorite subject was “my friends.” Because of his size, spontaneity and inability to remain on task, we felt his needs were best met in an exceptional education classroom, and we were delighted to see steady – but slow – progress in academic areas. But when a decision regarding high school needed to be made, Jonathan chose the most diverse and biggest school in the city. And he chose inclusion. Lots of it. The first years were great. He showed amazing self confidence and his academics continued to progress. But in his senior year, challenges arose. Class periods were changed to block schedules with 90 minutes per class, and class size hovered around 100.

Graduation : The Writing of A Success Story By Laura Watts, M.Ed.

Continued

We continued to search for his success story, distracted by the fears that prevented us from realizing that he had already written it.

Jonathan’s success story may not be one that makes national headlines or puts him in the Guinness book of Down Syndrome Records. But we still meet teens in the community who will slap Jonathan on the back, address him by name and tell him they go to Sandalwood. He beams with pride, returns the slap and replies with the expected Cool Teen Code (Hey, dude! How’s it going?). And when they leave, he confides that he does not have a clue who they are. He is thrilled with his success story – the one he wrote for himself and made happen. The one that was so much better than the one we had planned.

As we raise our children, we must remember that the early years are crucial. We need to prepare them for learning, but possibly even more important, we need to build their attitudes and give them the tools to write their own stories in their own ways and in their own time. All of our children have success stories. Let us encourage our children to discover stories that focus not only on what they can do, but on who they are.