April 30, 2012
Jelly was six weeks old when we got Moe's diagnosis. I marvel at the timing. If Moe had been diagnosed before I was pregnant, I don't think we would have had another child. Not just because we might have been afraid to have another child with autism, but because I would have felt that he needed all of me. And he does. He needs all of me.
But I need Jelly. I need her dress-up clothes and pretend play and her early morning stories floating down the hall to wake me. I need her giggles and sass, her funny phrases and "will you play with me?"
I need her amazing command of language, and love of preschool, and though I could do without her refusal to use the potty, I need the way she says "underpants."
I am amazed every day by this little girl who can write - and type - her name, who knows the zip code to our house (and to Umi City), and who is as stubborn as me. I need the way she chases Moe down the hall, and watches TV with intensity and for some reason knows all the words to Madonna's "Hung Up."
Tomorrow, I will write about how we celebrated her birthday. For today, I give you this:
April 20, 2012
Maybe the acceptance (relief, even) that we aren't likely to be moving this year; that our small but comfortable house will continue to be our home for a while longer.
Maybe it was the desire to take on a project, to make something happen all by myself. To find the inspiration and gather ideas. To climb the ladder and wield the brush. To take pride in a job well done.
Or maybe I just can't help myself.
I wanted something new. A soft grey. Some yellow. Just enough white.
I am amazed by the restorative power of a fresh coat of paint.
|View with rug. New curtains have not arrived yet,|
but you can see them in the link below.
|This painting was already in this spot, and looks|
lovely against the new wall color.
I did the original room in October, 2008. Since then, we got matching nightstands and a new bed. Current makeover included primer and paint (about $75 including misc. supplies), quilt and sham ($73, fab.com), rug ($279, West Elm), wall decals ($25, Blik), curtains ($110, etsy). Total cost $562.
You can view my inspiration board on Pinterest.
The painting was given to me by the talented Lina Gadelha Ashcroft. You can see more of her work in this You Tube video made by her son.
April 18, 2012
But there's more to it than that. I really thought I might win. And I had this feeling that by doing so, some door might open that would give me a clue as to what is next for me. It wasn't even I door I knew I wanted opened, but when I found it slightly ajar, I really wanted to see what was on the other side. And now that door is closed. C'est la vie.
But now I'm staring at a closed door, wondering what's next. I've been working so hard to figure out what's next for our family, especially for Moe, that I'm not really sure where I fit in anymore. Not as Mom, but as me.
You see, I never really wanted to be a stay at home mom. Oh sure, I wanted to try it for a while. When I was pregnant with Moe, it felt like an inflection point in my career, and I was more than happy to take a short break and spend some time with my newborn. But I always pictured myself with both a family and a career. I imagined myself rushing around in the mornings, getting ready for work, dropping the kids off at day care on the way. Life would be so busy! I guess a lot has changed about that picture in my head.
I know many parents, especially moms, face this dilemma, but my choice is clear: it is better for Moe if I am not working. This is the Right Thing. But I feel like I've lost a little bit of myself.
This is not Moe's fault. This is no one's fault. This is just the circumstance of my life.
I am not especially unhappy being at home. It just isn't who I am and I need to figure out a way to get some of that back. Blogging regularly again is a start, but it isn't the whole answer.
They say that when one door closes, another one opens. I seem to have misplaced my keys.
April 17, 2012
The bracelet arrived in the mail, small and shiny. I put it on my son’s four-year-old wrist, fumbling with the clasp.
For a few days, we both were acutely aware of its presence. When I tried to put it on him in the morning, Moe would squirm. I’d curse under my breath as I struggled to take it off at bath time. His wrist was pink where he tried to bite it.
I thought of the kids who wore this type of medical jewelry when I was young. The kid with the peanut allergy. “You can’t even use the same spoon as the batch with the nuts” my mom would tell me, “or he could die.” The diabetic kid at camp—the one I pretended not to stare at whenever he took out his kit. My friend with epilepsy.
But Moe doesn’t have any of those things. In fact, Moe doesn’t have anything. My son wears a bracelet because of what he is, and what he might do.
Moe is autistic.
Moe doesn’t speak. He is unlikely to respond to his name. And he loves to run.
Like many kids on the autism spectrum, Moe attends a special education day class. My husband drops him off in the morning, and six hours later, I pick him up, chatting with the other moms as we wait for the teachers to bring out our kids.
Every day, I spy my little Moe, with his blue eyes and curly blond hair, walking hand in hand with one of the people I entrust with his education and his care. Every day they bring him back to me.
Except one day, when they didn’t.
I wasn’t worried at first. Moe’s class is often last to appear, as they are the smallest bunch, preschoolers slowed down by oversized backpacks and the frequent need to investigate some bug or crack in the sidewalk. But when the rest of the class had arrived and I signaled to his teacher, she made an excuse about a forgotten backpack. I saw her run back toward the classroom, and I knew.
They had lost my little boy.
For a few minutes, I waited there, the still center of a time lapse photo. The other parents left. Teachers went back to their classrooms. The bus came and went. And I stood there, waiting.
During those seven or eight minutes, I thought of Moe’s bracelet—the one that had finally become part of his morning routine, the one he still fiddled with but no longer fought against. Why had I put so much faith in that thin piece of metal? It couldn’t keep him safe from the creek running behind the school, or getting hit by a car, or lost in the sea of children leaving school.
I still don’t know who found Moe, who had slipped into an empty classroom. His teacher brought him to me like nothing had happened. I cried on the drive home.
Later that day, Moe was wild. He ran maniacally around the house, screeching and crashing into the walls. I dodged his attempts to bite me as I wrestled him to the floor for a diaper change. His nails, overgrown because he refused to let me cut them, scratched red marks into my neck.
I was bursting with rage. Why couldn’t Moe just control himself? Why did everything have to be so difficult?
And why wasn’t I strong enough to handle it with grace and good humor?
F. Scott Fitzgerald wrote that the test of a first-rate intelligence is the ability to hold two opposed ideas at the same time, yet still retain the ability to function. To be able to see, for example, that things are hopeless and yet be determined to make them otherwise.
By that definition, I must be a genius.
We parents of special needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear—often in the course of a single day. We work tirelessly to help our kids succeed in the world, even when we have no idea what that success will look like. We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward.
And so it is that I send Moe out into the world every day, offering the only protection I can give him: hope, a hug, and a small silver bracelet.
April 14, 2012
April 12, 2012
Something happened recently that I have a hard time explaining. I wouldn't believe it if I hadn't witnessed it myself, hadn't documented what was going on. But I did.
We don't use biomedical treatments with Moe. He isn't on a special diet, nor is he on any regimen of probiotics or supplements or medications. We've never had his gut checked, or had him tested for allergies. It isn't that I don't believe parents who say that these things have made a difference in their children's lives. But there isn't a lot of scientific evidence to support these types of interventions, and we don't have any reason to believe that in Moe's case, they would help.
You might remember that a few weeks ago, Moe had strep. He was very tired and actually quite well behaved when he was sick. Of course, once we understood why he was so mellow, we put him on a course of antibiotics. I knew he would be feeling better very quickly.
Within a day of starting the antibiotics, Moe's behavior got much worse. He started hitting me, or more like swatting at me pretty much whenever I interacted with him. He threw his dinner across the room. He had a permanent scowl on his face and seemed just plain pissed off.
My first thought was that Moe must be feeling just better enough to be upset about being sick. He wasn't so completely exhausted that he was finally able to express how bad he felt. But after a few days, knowing the strep should have been knocked out and that Moe should be feeling fine, his behaviors didn't subside. They saw the same smacking and swatting at school as well, especially whenever someone tried to make him work.
Moe was on the antibiotics for ten days. The behaviors continued the entire time. It was frustrating for all of us. On the tenth day (actually, the nine and a half-th day because the liquid medicine ran out. Side note: why do they put exactly 100mL in the bottle, when some amount is always lost in dispensing it?), we stopped the medication, and within 24 hours the behaviors stopped as well.
The antibiotics had to be the cause.
Okay, I suppose it could have been something else. But the antibiotics are under very heavy suspicion.
I'm not saying that Moe is never aggressive anymore. He is sometimes. And he has added his new swatting move, which is often targeted at my face and knocks my glasses off, to his repertoire of moves. But it isn't constant, and is generally clear frustration-motivated behaviors, ones we can work on and try to shape into more appropriate responses.
I don't know why the antibiotics would cause a behavioral change like that. Perhaps Moe is mildly allergic to that antibiotic and wasn't feeling well. Or maybe something else was going on. If he needs antibiotics again, I'll certainly ask for a different one and see if it makes a difference. Regardless, I'm thankful his behavior is better off them than on.
Has anyone else experienced anything like this? Anyone have thoughts on why this would be?
April 4, 2012
But as the parent of a child who struggles with communication, I do spend a lot of time piecing together clues to figure out what is going on with Moe.
Last week, Moe was taking his mid-dinner break (he often eats in two shifts) and was in his room, quietly swinging in his HugglePod. All of a sudden, he started crying. This was not his bored/hungry/generally upset whine; this was the "I'm hurt" cry.
I ran to his room.
Moe was still in his swing, bawling. He looked fine. I tried to comfort him by squeezing his feet and knees, which he usually enjoys, and he didn't want that. He made his body very stiff and gritted his teeth. I thought perhaps he was constipated or had a stomach ache, so I put him on the rug, and pushed his knees up, but that didn't help. He was still really crying hard.
I started to get nervous. The last time he cried like this was when he split his forehead open, but he clearly wasn't bleeding. Was it his appendix? I tried feeling around his lower abdomen, but I couldn't remember what side your appendix is on, let alone what I was feeling for.
I took Moe to the living room to see if he would calm down in front of the TV. I figured it would distract him from something minor but not something major. He calmed for a minute but started up again. I was getting really nervous. I called Jeff who was on his way home. I decided that if Moe was still crying hard by the time Jeff got home, I would take Moe to urgent care. It had been about twenty minutes by then and he was clearly in pain.
I sat on the floor with Moe. The TV was still on and Moe slowly started to relax. He sat on my lap and let me cuddle him. As we were sitting there Moe started rubbing his head a little. He wasn't bleeding or anything. Maybe a headache? He rubbed the same spot, so I ran my hand where he did. Sure enough, there was a bump. He must have bumped his head while swinging.
Of course, by the time Jeff got home, Moe was calm and nicely snuggled in my lap. This always happens: I call Jeff in a panic or frustrated mess, and by the time he gets home, all is calm and wonderful. I'd like to think this is a testament to my superior parenting skills but really most things just work themselves out.
Moe's behavior (crying) wasn't a puzzle to him. He knew he had bumped his head. But it certainly was a puzzle to me. Now if only he'd rubbed his head first, I might not have been so worried.
But that would have been too easy.
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