beginning again

To my seven readers:

This is mostly a letter to myself. Please be patient.

I realize that my blog is on the cusp of being defunct. And that is not what I want. This blog started, in earnest, with Benjamin’s birth. When I had Benjamin, it was like someone smashed me in the back of the neck with some bricks. Ben, I am sorry, but that is what it was like. I love you so much I can feel it in my skin; the feeling is something physical that I carry with me. But you were an exhausting, relentlessly screaming infant. And I struggled to find a way to be a mother in my own way, never having really had one myself, and not identifying with those mothers I saw around me, and that was hard. And I wasn’t writing anymore—I was barely combing my hair—so I started this blog as an outlet. Yes, it serves the purpose of updating people and posting photos, but mostly, it is an outlet. When my little Elliott was born, Benjamin was in the midst of many developmental delays, and we were worried. And then as Ben started getting better, Elliott started getting worse, until, finally, he was diagnosed with autism. I have been through many experiences in my life, but that time navigating Ben’s remaining delays and learning to accept Elliott’s emerging ones…that time was a thick fog. It was hard. I gained weight, I got depressed, I viewed things very narrowly. I felt lonely and venomous and uncertain of myself during that time. Some of that is reflected here on this blog. The worst moments were not articulated.

Things are still hard sometimes, and I still worry, but I have come to terms with a lot of things, especially in regard to Elliott. He is starting a general education kindergarten in the fall, which I am nervous about, but, for once, I also see the possibility of him doing okay—which I can’t exactly define—of him having friends (he already has his first one) and being happy. Benjamin is his own little man, the top reader in his class, learning to play piano, a Cub Scout. He has his quirks, and his anxieties. He is unusual, like his mommy and his daddy, but that is to be expected. I feel so fortunate to have these boys who surprise me daily. I know that things can be worse, always, and I am finally beginning to exhale. My friend Michelle says that giving birth splits our bodies open, literally and figuratively, changing us fundamentally. I am beginning to look back at myself and see what I am left with. One thing I am realizing is that I care deeply about writing, and I miss it. This has been thrumming in the background for a while now, and I have been ignoring it.

I have decided to begin writing regularly again, and to start small. I will write at least one entry per week here. It might be about parenting, or it might be about something entirely different. Music, politics, books. Maybe I will post something more creative, something I am working out. In addition to this, a friend has given me some weekly time to write at the PermaDirty artists’ co-op in Claremont. It’s only two hours a week, and this is the third week I’ve been working here. Each week, I walk in exhausted, distracted, resistant. There’s a very small Swedish guy who is always there at the same time I am, mixing music on his laptop. He seems more “artisty” than I will ever be, but I sit down anyway and I type. Two hours later, I exit elated, even last week when most of my writing felt forced and clunky. No internet, no phone. Just writing. I’m working on old projects and new ones, picking my way through the words, slowly.

I was cutting Benjamin’s fingernails yesterday, which I have been doing at least weekly since the day he was born, so it has been seven years. (!) So much of life seems to be upkeep—laundry folding, gas pumping, tooth brushing—and that can be incredibly depressing. But it can also be incredibly reassuring, reaffirming even. Everything is happening outside, but here I am, sitting on the kitchen linoleum, cutting this kid’s fingernails while he chats about Mario and Yoshi and picks the cracker out of his braces with his free hand, the same thing that has happened again and again and again and again. His straw blonde hair is sticking straight up on his head and when I am done, he kisses me with his constantly wet lips and he tells me he loves me. He sits on my legs and relaxes into my body. His head smells like sweat. We begin again next week.

My new blog will be at http://angelacbartlett.wordpress.com

weight loss is boring

I lost 7 pounds in a month and have flatlined because I don't care anymore. And I like beer. But I'm still not eating grains or sugar (except for maybe once or twice a week), and I'm keeping my weight off. So, no dramatic before and after photos. Not for a while anyhow.

What this post is about is not weight loss, but about Elliott. Today, I watched some video of him from exactly a year ago. I could not understand anything he was saying. Everything began with a "k" sound and ended with a "k" sound. It was like he could not get his muscles in his mouth to work. He was trying to talk, you could tell he knew what he was saying, but I just couldn't understand it. And I'm his mom. Imagine what other people heard.

Yesterday, we went to a coffee shop, and Elliott told the cashier, "I have a backpack." She said, "You do? What kind?" He said, "Scooby Dooby Doo." She said, "Cool."

This may not sound like an amazing exchange, but my heart nearly exploded. He had a conversation, with a stranger and SHE UNDERSTOOD HIM. On top of that, he looked into her eyes when he talked to her. Holy shit. This was HUGE.

Not only that, but before we left school, he asked a boy what his name was and then he and the boy went off to play for a few minutes. Another mundane (HUGE for him) event!

On the way home, he told me what he had for lunch and a song they sang at school, another big deal.

It was just one thing after another, back to back, and I realize it sounds so small when I describe it, but it was amazing for us. I turned to Elliott in the back seat on the way home from the coffee shop and said, "I'm so proud of you." He just looked at me and asked me to play his Sesame Street CD again. I know he doesn't understand what I mean. But I also know that he will someday, soon.

insomnia, anxiety, hope

I know it's been awhile. Stop looking at me like that. I already feel guilty. So I awoke at 3:17 a.m. this morning and my mind began assualting me with "what ifs" and "to dos" and I could not go back to sleep until I had created an Excel spreadsheet the possibilities. I am not exaggerating.

Here's what's going on. Elliott is in an okay preschool with pretty good teachers and curriculum. He is happy and learning. However, his program is called an inclusion program, which means he should be with typically developing kids. The reason Elliott would benefit from this is 1) it's the law and 2) he does very well with watching and adopting more typical social skills from neurotypical kids. He does it with Ben all of the time. He went to a regular preschool for two years and did it there as well. At the same time, he needs the supports in place to help facilitate his goals, and this is why he needs to be in a special education program. An inclusion program offers both the support and the learning from typical peers. Redlands said they were giving him that but they didn't--all of the kids in his class have some sort of deficit, and many have more serious conditions. This is not an inclusion program.

So a friend and advocate told me that I can possibly establish district residency where I work and after a lot of back and forth with that district, on Monday, I have an observation at one of the most cutting edge special education inclusion preschools in the state. If we decide to move Elliott there, my schedule and his schedule will go all to hell. I will have to find someone to help me transport him to and from a school 35 miles away from our home. I'll have little time to work around that schedule. I'll need to devise Excel spreadsheets and worry late into the night. He'll likely have to attend a few meetings with me at work. He'll have to adjust to a new school with new kids and a new teacher. But it will be worth it. That kid is on the cusp of getting to where he needs to go; he just needs a great program to get him there. I hope this one is it.

happiness

I sat in the back seat of my car with Elliott this morning as he finished his waffle before school. Although he eats a lot, sometimes he gets silly and nibbles on his food like a tiny mouse, taking long stretches of time to eat a small amount of food. Since I consume entire meals in a matter of minutes, and generally do everything as quickly as I can, it kind of drives me crazy to watch someone eat so slowly. Plus, I didn't want him to miss circle time. So we sat together in the back and he smiled at me because he thought it was funny that I was sitting in the back seat rather than the front like usual. I rubbed his head and he asked me to see "wormy," his imaginary friend (basically, our index fingers). Yesterday and last Friday, he had to get a bunch of blood taken for routine medical exams related to his autism and his low weight. It seems like he is always obligated to do something: speech therapy (at two different locations), occupational therapy, behavioral therapy, assessments, doctor's appointments (psychological, medical, biomedical). He also has school and swim class. He's part of a research study up in Sacramento which requires even more testing. He has to get more blood, urine, and stool taken and examined than any other kid I know. I want him to get better, but I don't want him to feel like he can't simply enjoy his life. Sometimes, it's a tough thing to balance. When he was first diagnosed with autism, when things were really bad, when he was still just barely a toddler, I used to ask him, "Elliott, are you going to be okay?" before I put him down to bed. I never got an an answer of course. He's just begun to learn how to the names of emotions and how to recognize and imitate them. Sitting in the back seat with him, I asked, "Elliott, are you happy?" He said yes, and he smiled to demonstrate that he was happy. I asked, "Are you sad." "No," he replied, shoving a big bite of waffle (finally!) into his mouth. So, for now, I guess I'll do my best and take his word for it.