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!

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.

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.

Not my best friend.

I have this really ugly side. As the years have come and gone, I've realized that a lot of humans share this trait so I don't feel particularly unique about it anymore. And I'm not surprised when I encounter it in its various unexpected forms.

For me, something that hasn't changed over time is that I still can't squish the motherfucker down my gullet far enough. The nasty dog crawls its shit stained, piss-soaked tail out of my guts more often then I would like.

This, I believe, is the crux of my unhappiness. Of my depression. When I subdue the dog, I live and don't question myself. I feel good. When the dogs chews threw its leash and bites off its own leg and growls through my psyche, I feel very, very un-good. Phony. Pretend. Like the dream when you take the stage for the recital but you've never rehearsed one step. I know the audience can tell I'm a fraud, but I keep dancing anyway chasing that fucking dog back into its cage.

The kindness of strangeness

The Witnesses came by today. In their street clothes. That means it was an informal, unofficial visit. And they came to bring Lincoln a gift. This really cool, really tacky, bouncy/twisty/rocking horse thing that interacts with the TV. They thought about it a lot and thought it would be good for him. It is. And as much as I bitch, I do still truly believe there are a lot more good people out there than shitty people. And NO, none of that means that I am suddenly willing to accept Jesus Christ as my personal savior. Resume breathing.

Oh! P.S. HUGE P.S. When Witness Girl (she's married and she's a nurse, she's a woman, but she's so cute and adorable and the size of an Olsen twin that I must call her "girl") bent over to help put together crazyrockingpony, her rather adorable and dare I say *racy* panties poked out over her waistband. And I stared. The End.

Yes, it bothers me that much

So here's what bothers me about using the word "retard" and any of it's variations as insult, adjective or exclamation (please forward to all of your "but I'm an equal opportunity offender!" types):

When you use that word, the people who you are offending the most aren't likely to realize what you're doing and therefore can't defend themselves or respond appropriately to your assholedness. So, if you are a coward, press on! I'll be looking for you. If you'd like to change and grow a bit, find A NEW WORD.

U. G. L. Y.

This is the worst I've felt in a million years. Make that a million and a half. I am angry at everyone and everything. My mind is racing over everything that I fucked up today that I half did, half remembered, planned wrong.

I screamed in the car all the way home. Well, not all the way, just from when the fucking change oil light came on after the ABS light came on. The oil just got changed! The brakes suck! I can't take the car in tomorrow! I can't be stuck in a car dealership with 3 kids all day. I need to get Ruby her school supplies. I need to make phone calls for Link, to get a new script for his new OT, to be home for his OT appointment!

The screaming didn't feel very good. It was freaky and loud but that didn't stop me. I wanted my throat to come out of my mouth, for my insides to come outside and look as twisted as I feel right now. I wanted physical evidence besides my dark circles, grey hair and sagging gut that I feel BAD.

Link is crying up in his bed and I've told the girls to leave me alone. Nice. I can't scream in the house and I can't break anything and for now, my insides are still in.