Saturday, October 23, 2010

Explain Fragile X to Me..

What is fragile x?

The mutation of the x chromosomes...

Most inherited genetic disorder...

Can cause Autism or Autism like symptoms... blah, blah, blah,

Scientific speech that almost feels rehearsed rather than really give and explanation of what it really is.

Most of the time this is what I say over and over again as new people enter into our lives, whether they are there for as a professional who went to college to study disabilities and other things or they are just asking about my son.

However, is the scientific explanation what Fragile X really is or is it just what we have said so many times that we leave out the rest of the true explanation about it?

Do we leave out the good things or the bad because it is too much to talk about?

Or do we just not talk about them because then we feel like we are dumping our life story on someone?

Or does it boil down to whatever reason we give ourselves to not talk about the depth of how fragile x really has affected us or our children??

For the most part I leave out the facts that my son loves to give hugs, is generally a happy child, and is a loving little boy.

I leave out the stresses of not being able to communicate with my son and vise versa.

It is left out that he throws fits because he is unable to communicate and he throws fits when ever it is most inappropriate.

Fits at restaurants for reasons that are unknown and that most would think that he would not due to his love of all things food and drink.

Fits occur at school and they deal the best they can.

Fits occur when we are out in public, so I try and limit where he goes in hopes that it will make things easier on everyone but most of all him.

I take my son out based on many factors that most wouldn't even think about when getting their kids ready to go out into the world beyond the comforts of home.

I judge where we are going, what day of the week it is, who is going with us, and most important: what his general mood is that day. Because even if everything is right and he is not... I feel like I am asking for whatever happens.

But the most stressful thing about going one aside from the fits are the ones that occur in the car while we are headed away from home, where he wants to be.

The fit he gives when we head home, to the place I know he wants to be most of all.

Fits going home stress me out because he knows that we are going there and that is where he wants to be...

Yet he throws a fit.

There are things that I know I can't get out of taking him... no matter what he his day is like.

We can't get out of doctors, therapy, school and every other thing that he may not want to do.. but we fight with him and drag him along. Even when I would love to just let him be happy at home.

I leave out that he is not potty trained at almost 8 years old and we have hopes that MAYBE one day he will be able to use the potty.

But I am realistic that it might not happen any time soon.

But if I had to say the most important thing I leave out is:

The loneliness that I feel when fragile x is on my mind..

I lack the having my 'father' and his side of the family, from whom I got this gene from, and their knowledge and understanding of what X has done to change my life..


Don't get me wrong I have a wonderful husband that is amazing with all of my kids and with me. Even if he don't understand me all the time.. he really does his best! <3

I have his wonderful family who has accepted me and my kids into their lives without judgment; but, with understanding and the want to learn about X.

I have my mother who still don't quite understand me, but tries to and she don't mind how crazy I can be.

All the wonderful people who have entered my life since fragile x has become one of the terms to describe my kids and I.

Including those who I just met on Facebook!

But at the end of the day I don't really know much about how this X has affected ME mentally and physically... among other things.

I don't know how this X has affected my children... other than what I can see and they try and tell me.

Most of all, I don't feel like I can talk about what is going on within me and how it has affected me in ways that I don't even understand at times.

These are some of the things that I don't talk about to those who ask what Fragile X is, what the blood test showed in 2004 and how it has changed my life forever!