MOSAIC MOMENTS

October is Down syndrome Awareness Month! This month I will be featuring a story about an individual with mosaic Down syndrome or Down syndrome each day. You will have the opportunity to get a glimpse into these families lives and how living with extra chromosomes has enhanced each of these individual’s talents and abilities as well as their family’s lives and their community around them.

I hope you enjoy this as much as I am looking forward to doing it!

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Now…. On to our story! I will start our 31 for 21 with my own story…

When Tim was 2 1/2 years old he was diagnosed with mosaic Down syndrome. I was told he would never read, he would never write, he wouldn’t learn and I was strongly “encouraged” to put him in an institution. I couldn’t imagine life without my little boy! I had him for these past 2 1/2 yrs and all of the sudden the doctors were telling me to forget I ever had him! Thankfully, I didn’t listen to the doctors and I told them that Tim would do all the things they said he couldn’t do and more!

Tim’s main problem was speech at the time. (this is what prompted his diagnosis) So, I worked with him daily on his speech and we just made it part of our lives. His speech increasingly improved and by the time he was in 3rd grade he no longer needed speech therapy. Today, he speaks as clearly as any one else on the street. Well… maybe if you don’t live in Texas you wouldn’t understand him, but you probably wouldn’t understand me either!

They told me he wouldn’t read….

Tim began reading words at 4 yrs old. I read books to him constantly and he had the advantage of having a brother 4 yrs older than him, who was constantly working on homework and working on flash cards to learn sight words. Tim learned these words right along with Arron and quickly they began competing on who could say the word the fastest. Tim became an avid reader and so much so that we had to take the books out of his room at bed time or he would stay up to read. When Tim was in 7th grade his school said he had exceeded the state standards in reading. At 13 yrs old, he was reading above college level!

The doctors who said he couldn’t read…they were wrong!

They told me he wouldn’t write…

Tim had a real difficult time with handwritting in his early grades. If he had received the Occupational Therapy that is available today for handwritting, I don’t think he would have had such a problem. But, eventually he got it down and now his handwritting is way better than my own. But, maybe the doctors meant he would not have the capabilities of writing down thoughts and ideas… When Tim was 12 he began writing short stories and these stories were so fantastic that we thought he had copied them from a book! Next to reading…Tim loves to write and has a beautiful collection of several short stories that he would like to complete into novels. (It is just a matter of him staying focused to complete it)

The doctors who said he couldn’t write…they were wrong!

They said Tim couldn’t learn…

Tim never was in special education and he was never “mainstreamed” either. Tim was in regular education with slight modifications to help him complete his work. (He has ADHD so he had trouble staying focused with too many problems on a page) Tim graduated with a regular diploma in 2005. Yes, he did struggle some and it wasn’t always easy for him. Sometimes the teacher would call out the spelling words too fast and he couldn’t write that fast. (although his spelling has always been far better than my own!) Sometimes he didn’t understand how to do certain things in class. But… every single child has trouble in some area in school and needs extra help. It doesn’t matter if they have extra chromosomes or not!

The doctors who told me he couldn’t learn…they were wrong!

No one can say “Your child will do this or not do that” because unless they have some great precognition, there is no way they can foresee what your child can do!

Has having a child with mosaic Down syndrome changed my life?

You Bet! I am most definately a different person because of Tim. He has taught me so much about life, and love and what should really matter in my life! Of course, I could say that about each of my sons.

Has it been difficult having a child with mosaic Down syndrome?

Most definately! I have had those times where I thought things would be easier if Tim didn’t have mosaic Down syndrome. But then, if Tim didn’t have mosaic Down syndrome I know that I would not be the person I am today! I wouldn’t be this calm, strong, assertive mom that knows how to reach out and get the things I need for myself and my children. I wouldn’t view the world the way that I do now. I wouldn’t rejoice in the things that most people take for granted. And, if Tim did not have mosaic Down syndrome, more than likely there would not be an International organization specifically to help those families whose children do have mosaic Down syndrome!

When you ask Tim how he feels about having mosaic Down syndrome he says that he is glad that he has it. Without it, he says he wouldn’t be the creative person that he is today.

And Tim is not only a creative person, he is very caring individual who can show great compassion for those in need. He is funny, intelligent, meticulas, and he is happy. Mosaic Down syndrome is not a major part of our lives. Mosaic Down syndrome is not who Tim is. Mosaic Down syndrome is something that Tim has, but it does not define him as a person.

The most important thing that I have learned in these past 22 yrs with my wonderful son?

THE ONLY HANDICAP A PERSON HAS ARE THE PEOPLE AROUND THEM! TM

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