In April of 2006 our family received the life changing news that our son had a genetic mutation called Fragile X Syndrome. Like most people in this country, we had never heard of this condition even though it had been affecting Umma and her family for many years. The goal of this website is to share our story and connect with other parents of children with Fragile X and, just maybe, spread the word about this disorder so we are no longer greeted with "fragile what?" anytime we discuss our son's challenges and special needs.
All proceeds of PrettyFavors.com benefit Fragile X research and education!
Posted By Umma on March 9, 2010
This search string comes up in my stats over and over again.
For me, life with Fragile X is full of worry, uncertainty, anger, exhaustion and grief. It is also full of laughter, amazement, joy, gratitude, wonder and, most of all, incalculable love.
Posted By Umma on March 9, 2010
Monkey has been saying “shoe-ah-nee” for a while. He uses it very purposefully. He will repeat it for us several times when we tell him we don’t understand and then he’ll give up. Tonight, I FINALLY figured out what he is saying!!!!!
Any guesses what “shoe-ah-nee” means? I’ll put it below the cut.
Posted By Umma on March 8, 2010
The trains were running way off schedule. They were crowded to the point that my toes were stepped on repeatedly. Someone was leaning really hard into my back, my purse was in the way no matter where I put it and then one of my fellow passengers began hallucinating. Whatever it was that he was battling required a lot of shouting of some rather foul language. All of this added up to a really tense ride. Tension = headache in my world. Ugh.
So, I get to the office. I had not been happy when I left last week…I’d been in the midst of a pointless discussion that I seem to have every couple of months. “I know what I’m telling you does not match the law. I agree that you have interpreted the law properly. I also know that the man behind the window does not care. He’s been doing this for 20 or 30 years and you will never change his mind and, really, without that stamp of approval from him, you’re sunk. Sure, of course, I’ll go call and check again.” Such a waste of time and money but what do I know?
Anyway. I get to the office and that red light on my phone is blink, blink, blinking away. I glared at it. I did everything I could think of before checking that message. I even considered ignoring it. The whole time I was using some of the curses I’d learned on the train ride in under my breath. Finally, I picked up the phone and jabbed in the code only to hear…
Hewwo? Hewwo? Hi! Mommy!
That little Monkey managed to get his hands on Duhdee’s phone on Saturday and he called me at work. What a sweetie.
I’ve listened to it three times already. For some reason, it doesn’t feel like such a cwappy Monday anymore.
Posted By Umma on March 7, 2010
For most of Monkey’s life I could tell you at any given time how many signs or word approximations that he knew. Once in a while he would surprise us by showing off a bunch of new signs all at once but, in general, the words and signs came on so slowly that we were very aware of what he was capable of. Then, last fall, the words began to come on faster and faster. We are still delighted every time we hear a new word from him, we still celebrate every bit of progress but I can no longer tell you how many he knows. I tried to sit and list them all a while back, for some reason I can no longer remember, and I stopped after 200 words…and that was off the top of my head. I also used to write down all of our exchanges that lasted long enough to be a “conversation” or whenever he’s throw enough related words together to make a coherent sentence.
You know what? I CAN’T DO THAT ANYMORE. I can’t do any of it. He knows so many words that I have lost count and he uses new ones every day. He and I have conversations, multiple conversations, every single day. Some are cuter than others so they stick out more but many of them are so mundane that it just doesn’t occur to me to share them. I have MUNDANE conversations with my son. He tosses out sentences now regularly. Again, some stand out more than others either because he uses new words or he expresses some new desire that takes us off guard but they happen every single day.
There was a long period of time where I thought he might not ever talk and now…I’m starting to take it for granted a bit. I have to keep reminding myself that once upon a time I lived with the fear that he wouldn’t and now he does. I have to keep reminding myself of this whenever I think of something else I’m afraid he won’t do because I know he’s certainly not done showing us what he is capable of.
Oh, hey, had I happened to mentioned that, inspired by this post by fragilemom, I discovered that my Monkey can read too? This kid just keeps blowing my mind.
Posted By Umma on March 5, 2010
We’ve been using the loaner air cushion since last Friday and we’ve definitely seen some improvement in the eating situation! He really enjoys sitting on it, which is great, and we’ve noticed that we’re having to intervene much less often.
He will still overstuff but it’s not every single bite, it’s every 2 or 3 bites. And he is much better about using the fork or spoon. Again, he’ll still grab food (and this is when he tends to overstuff, the utensils slow him down) but we don’t have to tell him to use a fork or spoon with every bite. We’re seeing enough improvements that we’re going to order him one of his very own so he doesn’t have to cart it to school and back every day.
Yay for progress!
