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Wednesday, October 3, 2007

Settling in with Fragile X Syndrome

I remember when Drew was diagnosed at two months of age. We were devastated and alarmed. We watched for every milestone. He started early intervention right away. We found out before he was a year old that he was a mosaic of Fragile X Syndrome. That meant that some of his cells carry the premutation and some carry the full mutation. I was excited and hopeful. I remember thinking, He'll be less affected. Not as severe as my nephew Kyle. I excitedly told his teacher at his infant intervention class that he might not ever be classified as mentally retarded. She smiled kindly and said, "That's good. Let's not worry about that right now and focus on what he can do." As time went on, it was obvious that he was more than mildly affected by fragile X. His development was significantly delayed.

When he was two, we were in Kansas City for a research study. Dr. Hill Karrer led the study and asked me if he had been tested for autism. Again, I was alarmed. She said she thought he seemed autistic as well, and mentioned that he may qualify for more services with an autism diagnosis. I went back to the hotel room and cried. Drew came up to me and watched me cry. He started crying too.

He had difficulty transitioning to preschool. It took awhile until he felt comfortable going. The first year he had a Christmas program, the classroom aide held him in her lap. He stared out blankly at all the faces. Most of the other kids were able to sing and do the hand motions that went along with it. I remember being sad that he wasn't able to participate like the others.

When he graduated from preschool, he went up to receive his diploma and he dropped onto the floor and had to be drug to his seat. Most other kids were able to walk up independently and stand for their picture to be taken. I have a picture of him laying on the floor.

So, now that Drew is seven years old, I can say without too much sadness that he is mentally retarded. He has never had an official autism diagnosis, though he probably meets the criteria. He has a seizure disorder. He doesn't act like a seven year old "should", but you know what? That's ok with me. He is the sweetest thing in the world.(as well as his brother!) He always wakes up happy, and makes me laugh every day. He is well-liked by everyone who knows him. We have met so many wonderful people as a result of Fragile X being in our lives. I have learned to be compassionate for people who are different. Every time I see someone with special needs, I just want to hug them and take them home with me. So, even though I know there will be plenty of more "I hate fragile X" days, I am ok with it being in our lives. God doesn't make mistakes.

10 comments:

fivesmom said...

Boy oh boy did that make me teary. You're so real and you have the most beautiful outlook on your life and life with your X-men. They are blessed, they are. And so are you!

PerryRocks said...

I loved that post. God gave Blake and Drew the best mom in the world. Isn't it awesome to know that He chose you and no one else to be their mom?

P.S. I love reading your blog daily. :)

Bekki said...

What an inspirational post Kristie. I'm teary too.

FXSmom said...

Matty received all his diplomas on my lap while staring at the floor...lol. :)

Peggy said...

So nice, and difficult, and yes, we do somehow settle in and realize our journey is worth every moment. I'm right there with you.

Misty said...

My fraggle is 12 years old and has apraxia. He cannot speak very well, is moderately retarded, but he is so happy. His smile makes you melt and he is such a sweet boy. As a mom to any child with special needs will know, we just learn to take it one minute at a time:)

Chris said...

Thank you for the great insight into your World!

Paula Fasciano said...

Ahhhh, the meltdown during the Kodak moment...never a dull moment for us is there?
What a GREAT post Kristie!

Anonymous said...

hahahaha that was hilarious. im glad im not a retard! KKK!

Anonymous said...

im sry