The big motivation for me this time? Many of my friends and family are on Facebook, so it's a good way to update people all at once about those things really important to me. The problem? I recorded what I believe to be one of the best little snippets ever on my iPhone last week. I'm somewhat desperate to share. Think 'shout from the rooftops with joy' kind of sharing. I can't upload said audio clip to Facebook. No .m4a or.mp3 files allowed. I get it, I understand why these types of files aren't allowed to be uploaded. But, this recording is of Grady, not the latest and greatest from the music industry. He's difficult to record, audio or video. Not necessarily because he's acting shy, but because he wants to see what you are doing, so he immediately stops what he's doing to check out the situation. So. frustrating.
A little background.....when a family receives a diagnosis like fragile X syndrome, it's akin to being thrust into a giant black box. The future is unknown. Truly unknown, or at least that's how it feels. It's often a pretty good assumption that typically developing children will move out of the house one day, and lead a fairly independent life. There are no guarantees like that with a disorder like fragile X. It's a spectrum disorder, meaning some individuals are mildly affected, while others are more profoundly affected. Since FXS is caused by a mutation on the X-chromosome, males are often at least moderately affected and will possess intellectual disability. Only time will tell how affected one is by the disorder. Really, this post isn't meant to be a lesson in fragile X syndrome (you'll receive that from me at a later date, I promise). If you are curious NOW, then please visit here.
Fragile X taught me quickly that ALL milestones, no matter how big or how small, deserve celebration. Big celebration! While this may seem small for many, for those of us who have children with a disability, it's a pretty big deal. I present to you.....Grady spelling his name while pretending to write the letters with a bubble wand while taking a bath. Since blogger makes it somewhat difficult to share just an audio file without having somewhere to stream said audio file from (a very frustrating and long story), you are stuck listening to the audio while viewing 4 photos taken of Grady this week.
