Autism awareness day.. To Facebook or not to Facebook?

Not sure what day we are at with Grant now, but he has been seen by every specialist on his IFSP except the nutritionist, and that should be soon. Still good and bad days oth noticing his behaviors, lack of eye contact, etc, but mostly good. I haven't made a general announcement on FB yet - actually I thought this blog was connected to my FB page but so far no one has noticed it, which keeps it easy for me to write feelings without repercussion, anyway. It's raining. Nice sound on the roof, and pleasant to sleep to. This Easter weekend was fantastic-visits from Scott's brother's family were just what I needed to pull me gently out of a slump. They arrived with a homemade piñata, 84 Easter eggs filled with candy, and ideas to make Easter fun. This promises to be a good week; they've never been to new England and want to play, play, play. Normally that would be great, but this was supposed to be the first week that grant got his full 20 hours of services, and i cancelled his first 4 tomorrow because evyone else thought we should take the babies with us to NYC (and we didnt have an evening babysitter). Felt pretty wrenching to text the SLP at 9pm the night before and ask if she. I'd possibly squeeze us in later in the week. And then canceling on the babysitter as well- she was even coming to babysit on her 18th birthday tomorrow. The reality of 20 advice hours a week is beginning to set in. I still don't feel like I know exactly what things we are specifically training Grant to do, but I'm trying to make time to read the Denver model book and get a feel for the hierarchy of skills. Guilt, guilt, and more guilt. Someone told me early on that they "didn't feel a need to publish their lives on FB", I guess encouraging me not to specifically talk about Grant's diagnosis. But I want to move awareness for Autism forward as much as I can. Autism awareness day is April 2, tomorrow.

Anger and (W)rest

My B23 company owner (SLP) came over today for almost two hours- told me he wanted an honest and open and trusting relationship and that I could ask him anything. Uh-huh. His point: I had asked for the developmental psychologist to check in with us quarterly as a part of Grant's IFSP and he couldn't afford it. So why did the teacher agree to put it on the plan so quickly? And why all the secrecy about coming over and talking about trust and openness? We haven't even started therapy yet! Trust comes with experience! But even with his circumventing around, I think our ideas of what therapy should look like for Grant are fairly similar. He gave a copy of "Early Start Denver Model for Young Children with Autism". I read the first chapter tonight; hard to read about how early brain connections/ development (or lack thereof) keep exacerbating as a baby finds objects more attention-getting than people. But we still have enough time with Grant to sway his attention and encourage him to be turned into emotional responses. As the SLP left today Grant pointed out the window and said, "it's a truck!" and even used joint eye gaze. He should make good progress quickly. The other piece of literature was about diet modifications, which I'm going back and forth about. We'll see I guess. Lots of changes, but didn't I always function better with a project anyway?

Worry & Relief

The SLP (company owner) from Grant's B23 company called today and said he wants to "talk about the evaluation-is tomorrow okay?". I'm wondering if I should've asked for a lawyer. I spoke with my closest neighbor today, and it felt good to begin to tell the story of Grant's diagnosis the way I want to. Bad news isn't fun to tell over and over, but it takes a certain shape as you make realizations while you're talking... At least I do. I'm realizing how much we've encouraged Grant to use his language to express himself, and because of our encouragement, how long it took us (me) to notice he was missing some of the non-verbal communication pieces. The sides of my fingers keep getting bitten smaller though, as I can't help worrying about the future. Will he whine and moan and look into the distance as he speaks when he's 3 or 4, the way he does now? I'm finding that making personal connections with other educators and parent advocates is helpful. I've emailed a professor of mine that is a prominent researcher in the field, and she wrote back right away, advising me NOT to consider making dietary or vaccination restrictions. I don't want to grasp at straws, but my focus is almost like a laser, trying to search for something, anything. It can be a desperate and lonely feeling. But at faithful times I realize that Grant will reach his Divine potential and these trials can only serve to bring us closer to each other, and to God. Humility isn't as bad a feeling as I once thought.

Day 2- Rewind.

My journal on Feb 20th: "Grant's B23 evaluators left convinced he has Autism. I'm blessed to feel okay, even optimistic. I love the Lord." Feb 21st: "so my emotions are just beginning to swing a little today, but overall they're still being held pretty steady. So what does God think of all this? That He let us be ignorantly blissful for as long as He could? That we needed to be Humbled? That it was time to join a network of people bonded together by a common cause? Needed to get me som relief with Childcare, finally? Needed to help me realize that I've been carrying 'the big glass of water' too long? That it needs to be handed off? So many questions. Grant, is he worse now or do I just hear every moan and whine differently? Does he look at me less now or do I just see that his gaze wandered all the time before? And the biggest question of all: How could I have been so surprised? I wasn't expecting this at all."

First Day

Of course it's not really the first day. Grant turned two a month ago and really, the first day I even considered he had Autism was the day of his Birth to Three evaluation. It went something like this, SLP:"well, he's failed the M-CHAT (modified checklist for autism in toddlers)." Me: "Yes?" I did listen to what they said, and later very truthfully said, "I'm hearing it, but I don't believe it." That was two weeks ago. Much has changed, and I hope to write about the beginning of my acceptance process later. Waiting for the developmental psychologist to deliver the news today, well, it was harder than I thought. When I worked as a Birth-to-Three SLP just six years ago, my families had to wait 6 months to get a diagnosis. Unimaginable. So this is day one, and my series of blessings has begun.