MOSAIC MOMENTS

One of the main questions I get from parents who have children with Trisomy 21 Down syndrome and mosaic Down syndrome is, ”Why does it matter to know the true diagnosis and why does it matter what you call it.” 

There is not an easy ‘one point’ answer to this question. So, I will begin to explain this in the easiest way to understand.

Last Fall our support group had a very lively discussion concerning why it matters to say your child has mosaic Down syndrome instead of Down syndrome, if in fact, that is what your child has.

To help our members better understand, I asked them this question…

The first part of my question was, “If I told you that I had the best cookies you have ever had, what would you say?”

One person asked if my statement was a fact or opinion.

My answer was that it was an opinion and although many may disagree with me, most of those who had tried my cookies agreed that they were definitely the very best!

Many asked for the recipe of the cookies and what kind they were.

Of course you would want to know what kind of cookies they were and how to make them. We all are very interested in unique things and are interested in learning new things!

However, I told them that it didn’t matter what kind of cookies they were, after all, cookies are cookies. They are all the same, even though mine are THE VERY BEST, surely it shouldn’t matter to you what KIND of cookies they were. Because all cookies are made from the same basic ingredients anyway.

I also told them that the recipe was very long and I just didn’t have the time to explain how to make them.

My question: How did this make you feel?

Many said that I was stingy, mean, & selfish. Others did their best to understand my situation and said that they knew when I had the time, I would give them the recipe. One member went berserk and wanted my cookies! lol

So, now…the final conclusion to the reason for this scenario….

My “cookies” are the very best. (in my opinion) The ingredients are long and drawn out and I do have to take the time to explain how to make them. But, because they are so unique, and so wonderful I personally always take the time to explain how they are made. Why? Because it matters. Because “cookies” are not all the same. Sure, they are made of the same basic ingredients: sugar, flour, salt….but when you begin to mix in chocolate chips, peanut butter or oatmeal, this makes my ”cookies” very unique!

If you haven’t figured it out…my “cookies” are my son, Tim.

And, all people who have mosaic Down syndrome.

So…my final question was…Why do some of you tell others that your child has Down syndrome, when in reality, your child has mosaic Down syndrome? If you do not take the extra minute to explain the difference, then the world will continue to not know that it exists! Forms of Down syndrome, like cookies, are different.

There are four types of Down syndrome.

T21 Down syndrome (DS)

mosaic Down syndrome (MDS)

translocation Down syndrome (TDS)

mosaic translocation Down syndrome (MTDS)

And, in general, people with MDS and MTDS are not functioning at the same level as a person with DS. There is something different about the way they interact, about the way they learn, and about their progression in their skills. This is not to say that people with mosaic Down syndrome are all “higher functioning”. There is just something different about them that is so very hard to understand unless you get to know someone with mosaic Down syndrome.

So,  if no one is educated on MDS, they will continue to be “over-amazed” like so many of our members have experienced when their child had reached a milestone before they were expected to. If you continue to tell people that your child had Down syndrome, then we as a whole will never discover information on MDS, because everyone will think your child has Down syndrome and will just be confused when they don’t look like they have Down syndrome or they meet a developmental milestone way ahead of their peers.

This is not a shameless insult on the Down syndrome community. So, please do not take it as such. Everyone, including people with T21, function at different levels. I am not in any way saying that people with MDS are “better” than people with DS.

I am just saying that as parents, grandparents, siblings, aunts and uncles, and individuals with MDS, it is important that you educate the public on MDS! It is different. It happens at a different time in conception, if affects the body differently, and it affects the brain differently.

You can take time to give the “recipe”! It wont take but a moment to explain it. You are making the way for individuals with MDS for the future! Take the time to explain it and if you need help explaining it, just ask me! I can explain it in less than 30 seconds!

I hope this helps you to begin to understand why it matters what you say. Tomorrow, I will expand on this and continue explaining the differences and why it matters.

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