November 8, 2010: So there have been a few sweet moments… and a few that have made us think the “A-word” isn’t so far from possible.
We are going to try the GFCF diet. I was so reluctant—even a week ago. We just want him to be a regular kid who eats pizza at the birthday party. But I will do it, just in case going GFCF will save him from stepping completely into that autism world—because he’s not totally lost, but is dancing on the edge, I think. IF this diet can save kids that are far worse off than Jack Riley, imagine what it can do for him. The diet is worth a shot… mostly because I want to help him progress—NOW. I do wish beyond all that he’d gain some language—words and understanding—in the next few weeks. I want to see a little progress before therapy begins—oddly—before his next evaluation and certainly before our families see him for Thanksgiving and Christmas. He should be dairy-free by Wednesday and I think gluten-free by next week/weekend. As my father’s daughter, I have the need to use up the items we already own—and that fact will force me to practice a little patience so that we can see what happens when he’s dairy-free. So far, so good. Tonight, his bottle was 2 oz. milk + 5 oz. rice milk + 1 oz. water. No hesitation. None.
I hope I’m not setting myself up for disappointment, but it would sure be a boost to our spirits to see a little spark from him in the coming weeks due to the dietary change.
The big highlight of the week: I’ve been given the thumbs up to work from home 2x per week. That goes so far to reduce my stress and anxiety level. I can’t even begin to explain. I need to be here for my son. I need to help him navigate this.
We’ve decided to postpone our efforts for baby #2. I expected the idea to devastate me—another blow so soon after the worst blow of our lives. But I’m truly relieved.
December 1, 2010
I can’t even look at pictures anymore without them being clouded by autism.
My computer goes into “slide show” mode if it’s not active—a mode I used to love as it scanned through images of our lives—our wedding, my pregnancy, tiny baby pictures of Jack Riley.
But now each picture has a question.
The image of me at 25 weeks pregnant –so happily showing off my swollen belly leaves me asking if Jack riley was already affected then. I wonder, while looking at a picture of him just days home from the hospital if he was already on this path or if we’ve done something to him or not protected him in some way from the monster that would ultimately take over.
I hate that autism has managed to steal happy moments from our past and seems most certain to steal them from our future. The financial burden is only beginning to reveal itself and we’re being told to tighten belts that were already tight. My husband’s dreams of a satisfying career are all but shot and my vision of becoming a successful fiction writer seems to be an immature fantasy, better suited for those not facing a debilitating diagnosis. Even dreaming of another baby seems selfish and impractical right now.
I’m angry that autism has chosen me. I don’t want to be that mom. I don’t want to abandon all sense of self to do what’s needed for my son. I don’t want to threaten my marriage. I don’t want to be all consumed with this thing I so severely despise and I’ve just met it.
But I love my son.
December 16, 2010
Jack Riley turned 2 yesterday (Best. Day. Ever.). We took him to the mall to play and ride the carrousel and visit Santa. I don’t know what we expected—horrible transitions and tantrums, I guess—for every fun activity there’s the part when we have to move on. But he was great. Easy going. Fun. Seriously. He is a very happy guy and is trying so hard to find his voice (he has learned to say “GO” at all the right times).
I’m trying so hard NOT to be in denial. Am I crazy for having moments of blissful doubt? I believe he needs every therapy offered to us – and I’m grateful he’s getting it. But he’s so happy, so affectionate, so charming (I’m clearly whipped) and so excited about every little thing he learns that I think he’s going to be better than fine. It just doesn’t seem as dire as they’ve painted it. I find myself waiting for some awful sign… then he looks me in the eye, smiles and pulls my head to his so I’ll kiss him… for the 93rd time…
January 5, 2011
Last night after I turned out the lights, Jack Riley draped his lovey on my chest and wrapped his little arms around me: a hug. A real hug. He’s done this a lot lately. And that means an awful lot to a mom who’s afraid of losing her son to a thing called autism.
It’s hard to believe that he has 17 words now. He doesn’t use them all consistently, but he’s definitely using words more often in general. He says “cat” for most cats. “Car” for toys or car commercials. He anticipates when his video will sing about “coats” and said “shoes” last week (though not since).
He pointed at a toy today and brought it to me—twice. That must mean something.
He waves occasionally. Weak waving counts, right?
But the hugging tops it all.