Sunday, October 31, 2010

Listen Up!

While we were in Sacramento at MIND one thing we got confirmation on and learned way more in-depth about is Link's speech delay.

Fragile X'ers have difficulty speaking for a variety of reasons:
~Their loose connective tissue can make it hard for them to move their mouths correctly to form sounds
~They can have a highly arched hard palette; also causing problems with sound formation
~The over excitability in their brains makes learning in general, very, very hard. Speech often takes a back seat

We learned that Link, at 22 months and 2 words, is very, very advanced. We were told to embrace the fact that this is considered "verbal" in the Fragile X world. We also learned that by age 3, we can expect him to have 10 words. And if he's lucky, he'll be mildly conversational by age 7. Speech development and anxiety are the two biggest factors in assisting young Fragile X'ers with keeping the IQ gap between themselves and typical children as narrow as possible.

Our boy has been getting speech therapy since 9 months of age. And about 3 months ago we incorporated some sign language. Out at MIND they stressed hitting speech hard and heavy. They said up the sign language. They said to use something called "prompting" to help him form sounds. And they also recommend medications. 4 of them.

Within a few days of being home, Lincoln's grandma Jeanne had a "Baby Signing Time" video in our mailbox and a little over a week ago we started the boy on one of his meds.

Today, while he was eating his snack he looked over at me and perfectly and precisely did the sign for "more".

Look out, people. The sweet Mr. Buddy is making his needs known. HALLELUJAH!

Sunday, October 17, 2010

23 Months Old

I feel safe in confirming to the world wide internets that my boy has decided that walking around, getting from here to there on two feet, ain't no thang.

It's been two days. He ambulates like a belly dancer, arms swaying, abdomen driving the train, gut-wrenchingly sweet.

Saturday, October 16, 2010

Vanilla Sky

So there was a part of our visit (mine and Link's and my mother in law, Diane's) out to Sacramento that I was not entirely prepared for.

There were so many balls in the air for this trip. So much planning, wanting, waiting. There were messed up travel plans, missed flights, insurance snafus, incompetent office staffers. I was wound so tight to make this happen for Lincoln, for us, that I was wholly caught off guard for the parts that were about me. ME.

Since my son has an X-linked genetic disorder, he got it from me. ME. Simply, I am a carrier. I've known that rationally since we got Link's diagnosis. I never really felt it emotionally until now.

Why I have anxiety, depression? Why I worry? Why I feel overwhelmed and have a hard time coping? Why I have always, always had a hard time reading diagrams and understanding things like floor plans for fucks-sake? Fragile X, that's why. Why my father was so reclusive, quick to anger & not very bright? Fragile X.

I'm not supposed to wallow. I don't want to wallow. But I'm still crying almost every day. Usually just a little bit... in the car, alone.

Not supposed to think about what could have been, just what is.

But. BUT. B U T! If I had known sooner. If. IF. I F!

I feel like I ruined my son's life and I fucked up Penelope. I want these musings to go away and find a nice tidy home in hell where they belong.

They took my blood out in CA and I sit and I wait for the results of my affectation with Fragile X. I imagine the various outcomes and try to apply some sense to my life (MY LIFE. ME. SELFISH BITCH.) with each one. My gut is that I have a full mutation on one of my chromosomes. My gut is that me and my baby boy are the same. My gut is that I have lived for 40 years as one thing and I'm about to find out that that thing never existed.