MOSAIC MOMENTS

My 4 yr old grandson, Spot (his given name is Anthony but we have always called him Spot) used to say, “It is, and It isn’t… I said Both!” He made sure that he covered all his bases in case there was a debate on his observation. Spot is definitely a little character and always has something to say about everything!

This brings me to the debate on mosaic Down syndrome and Down syndrome.

Are they the same?

It is, and it isn’t!

With IMDSA and DSAGC in the midst of our conference planning for our July 2009 Research & Awareness Conference, this question continues to come up. Families of children with Down syndrome worry that this conference will not provide them with the information they need to help their child who has Down syndrome.

However, people with mosaic Down syndrome DO have the same kinds of delays as those with Down syndrome. They still need Speech, Occupational and Physical Therapy. They still are at the same risks for the same medical conditions such as heart defects, thyroid disease, and leukemia. They still have feeding issues, sensory issues, behavioral issues, and the risk of Autism.

Every single issue that an individual with Down syndrome experiences, a person with mosaic Down syndrome also experiences!

So, in planning this conference, we invite all the same speakers that someone would invite for any Down syndrome conference! And, we are inviting some of the big names in the Down syndrome industry! Along with many researchers interested in doing research for Down syndrome.

THIS IS A DOWN SYNDROME CONFERENCE!!

Just in case you didn’t hear me……

THIS IS A DOWN SYNDROME CONFERENCE!!!

Within the next few weeks, we will have registration information available on our site. We are very excited about bringing this conference to the Cincinnati and do hope for a large turn out of participants throughout the world.

Our conference theme–Building Bridges for Down Syndrome– explains our mission.

First, we are bridging a gap between the two communities of Down syndrome and mosaic Down syndrome. Over the years, we have had numerous families come to us and say that their Down syndrome community did not welcome them in. To me, this is sad. The local DSA’s have so much to offer, but they often have this preconceived notion that because the family’s child has mosaic Down syndrome, they “aren’t delayed enough” to warrant their services. Not all DSA’s are this way! Many embrace every parent who walks through their door! But, there are many who don’t want to give the family the time of day!

(if you are a board member of a DSA and would like online or printed materials, please just email me or give me a call! We have lots of great information that you could pass along to your families)

Many ask us why we formed an organization for mosaic Down syndrome specifically. This is one of the main reasons why. Because families felt they had no where to go.

But also, and this brings me to the “It isn’t” part, they come to us for answers that no one else seems to be able to give them. Although people with MDS can have all the same delays as one with Down syndrome, a lot of times (but not always) the child with MDS meets their milestones at a faster pace than those with Down syndrome. Or, they aren’t affected in one area of development, while they are in another. (this depends on where the affected cells are located) We don’t know a lot about mosaic Down syndrome and how it is going to affect each person. We are working with researchers to discover the mysteries surrounding mosaic Down syndrome. Unfortunately, this takes time!

The other part of our “Bridge” in “Bridging the Gap for Down Syndrome”is we are bridging communities all around to help everyone better understand Down syndrome. A perfect world would be when someone doesn’t look at a person with Down syndrome (of any form) and take two steps back and divert their eyes because they are afraid the individual might talk to them!

People with Down syndrome (of any form) are just like everyone else! They have the same wants, needs, hopes and dreams!

If you have questions or comments about our upcoming conference, please feel free to leave a comment in the comment section or email me and I will be happy to answer your questions directly.

Trackback URI | Comments RSS