January 28, 2013

The Fog is Lifting

We've had a rough stretch. The lack of sleep, combined with Moe's increase in aggression and what behaviorists call "non-compliance" (aka brattiness) has been exhausting. We've been on lock-down, my chest tightening whenever I had to take Moe anywhere. Our outings became limited to speech therapy, gymnastics class (recreation therapy), and the occasional quick, only-the-necessities, visit to the grocery store.

This is crisis mode. We hadn't gone out to eat as a family in a couple of months, something we used to enjoy doing most weekends. Moe tried to calm himself with sensory behaviors, like spitting and intense screaming. Even playing in the backyard seemed overwhelming for him.

Earlier this week, the fog started to lift. He slept through three of the last four nights. This weekend was pleasant, in part because I had book club on Friday night and went to the city to see Wicked on Saturday. But it wasn't just that I got to step away from the madness. Moe seemed almost back to himself. He was gentler and happier. He ate better and didn't fight me every time he needed to get dressed or put on a new pull-up.

Amazing clouds on the way to the city
The shift was subtle. Moe still screamed a little. He pulled my hair once - hard. But it wasn't constant. He spent time snuggled on the couch flipping through a magazine. He even let Jelly share the blanket as they laid toe to toe on the couch watching Team Umizoomi.

Right now, he's giggling with his therapist and asking for more back rubs and tickles. He's listening and behaving better.

I have no idea why. These cycles come and go, and I spend a month or so wondering what changed and just when I have my theories lined up, they change again. And every time, once I begin to see clearly again, I'm reminded that this is the cyclical nature of Moe's development.

Maybe this is how all development works. With Moe, it feels more extreme, though it probably isn't. It seems that way because his protests come in the form of screams and scratches instead of whining and shouts of "you're the meanest mommy ever!" Behavior is communication, and yet, in the thick of it, it is hard to hear what is being said.

His smile returns

January 20, 2013

A Life of Choice

"She hadn't made her life happen; it had happened to her."
-Kate, The Expats

So much of life is about the choices we make. One decision leads to another and another, figurative (or sometimes literal) forks in the road.

I've never lived abroad. There are relationships I should have ended sooner, and others I should have fought harder for. I might have chosen to live in New York City after graduate school, rather than come back to California. I've never lived in the heart of a big city, though I've always wanted to. 
I've had interesting jobs, married a good man, had children. I left my career to raise my kids.

There are smaller decisions too: bought this car instead of that, ordered the chicken instead of the fish. Some decisions are more important than others, of course. I've made some good choices and some bad ones. Some I wish I could do over and others I wouldn't change. But for the most part, these choices were mine to make freely.

I sat down to write this, thinking it was going to be a post about what happens when the choice is no longer yours. Because although I chose to be a mother, I didn't choose to be the mother a special needs child. I didn't choose to have a child with autism. And while I can tell myself that I can choose how I deal with the situation, sometimes I feel like my emotions are not truly under my control. While I aim to stay positive and hopeful, sometimes I am overwhelmed with despair, fear, and most of all, frustration.

But it struck me that the hardest part about parenting Moe is not the lack of choice. It is quite the opposite. Jeff and I have so many choices to make. What therapies do we try? Do we send Moe to school? If so, do we fight for a private placement? Do we try medications? What AAC device are we going to choose? Who do we trust to guide us through  all of this? Most of the time we are on our own and flying blind.

Of course we have to make many decisions for Jelly, but the right ones always seem to be a bit clearer. And the smaller ones seem to matter less. I don't mean to sound flippant about parenting her, but I am more confident in my instincts there - or at least that we will figure out pretty quickly if we've made the wrong ones.

I am thankful we live in a time when we have options for Moe. But sometimes the decisions become overwhelming. There I days I really wish my most difficult decision was "grande or venti?"  


This post was inspired by mystery thriller novel The Expats, by Chris Pavone. Kate Moore sheds her old live to become a stay at home mom when her husband takes a job in Europe. As she attempts to reinvent herself, she ends up chasing her evasive husband's secrets. Join From Left to Write on January 22 as we discuss The Expats. As a member, I received a review copy of the book.

January 16, 2013

Setbacks, Regression and Off Days

We had been moving along at a nice clip. Moe was doing well, sleeping better and most of his aggressive behaviors had all but disappeared. He has recently begun answering "yes" and "no" with a head shake or nod and was verbalizing with intent more often.

Then things began to fall apart. Starting right before the new year, Moes started waking a lot during the night. He stopped trying to talk (though he is still pointing and nodding). And then some of the aggression returned, the kind of keep coming at you, scratching and hair pulling, we hadn't seen in months.

Just long enough for me to believe it was gone for good.

This is when it gets hard. When it starts to feel like all our hard work, both mine and his, has gone out the window. When I question everything, when I wonder if it is time to double down on what we're doing or throw in the towel and start over.

The hardest thing is not knowing why. Certainly the sleep and behaviors are linked, but what is the root cause? Is this just a temporary setback because Moe isn't feeling well? Is he not sleeping because he's processing all he's learning and beginning to understand? Are his behaviors a result of increased frustration at having more to say and being unable to say it? Or is this a real regression?

The weekend was tough. I dreaded Monday. I absolutely hate taking Moe to speech therapy when he's so aggressive. When he's misbehaving during ABA, I feel like that is what they are, at least in part, there to work on. They are behavioral interventionists. But during speech, I just feel bad. (Our SLP has an ABA background so she in unfazed. This is all me.)

But Monday's speech session was one of his best. He really participated. He had no negative behaviors. The rest of the week has been good so far. A little bit of hair pulling and scratching, but much less frequent. And he's working hard again.

So what does it all mean? I have no way to know. Maybe he's just testing us, seeing what he can get away with, like any five year old might. All we can do is go back to the techniques that have worked in the past, continue to help Moe learn to communicate and move forward.

January 3, 2013

2012: A Look Back

Twenty-twelve. I admit I'm not sad you're gone. Don't let the door hit you on the way out and all that. I mean, the first half of the year kind of sucked.

We spent a lot of this year trying to outsmart Moe, who continues to find new ways to get into trouble.
We re-engineered his diaper.
He figured out how to open the child-proofed doors and we had to replace all the door knobs.
He started climbing everything. I found him everywhere from the top shelf of his closet to the fireplace mantle to the top of the refrigerator.
Moe had several months of pretty awful aggression.
We had four contentious IEP meetings with Moe's school, meetings that I am still not able to write about in case we decide legal action is necessary. But I did write one piece about how I felt after the last meeting.

But this was also a year of transitions, fueled by those contentious IEP meetings and the realization that the school was failing Moe. And one that proved that Moe is capable of learning and change.

We pulled Moe from school this summer. We started working with him at home. And at the end of the summer, we decided to keep him home.

We learned that Moe's aggression is primarily behavioral - an attempt at communicating frustration, rather than a "sensory" need.
We learned ways to manage that aggression. (It still happens sometimes, but we know how to respond, and it has dramatically changed the way we work with Moe and the way he communicates with us.)
As a result, Moe's communication skills are improving. He points, nods his head yes and no, and sometimes approximates some words.
We are working on finding him an AAC device that may help him communicate more easily.

Last year, I asked these questions:
What will this year bring? Will this be the year Moe learns to speak? Will this be the year we are able to travel to visit family? Will this be the year both kids will be potty trained? Will this be the year we sell our house? Will this be the year I stick to some kind of exercise routine? 
And if none of those things happen, will this be the year I am able to find peace and acceptance of where we are, no matter what?
If I look at those questions alone, it seems very little happened in 2012. Moe did not learn to speak. We were not able to travel, and both kids are not potty trained. We pulled our house off the market, and my exercise was sporadic.

But if I look closer, I know that while Moe didn't learn to speak, he is trying, something he wasn't doing before. Travel still seems a distant dream, and although Moe isn't potty trained, Jelly is. We pulled our house off the market, but we are now in a much better position to move if we wanted to, and the market is back up a little. And I have been going to the gym, having fun in Body Pump and U-Jam classes among others, and although it isn't as regularly as I'd like, I am making an effort.

As for peace and acceptance, I suppose I've made progress, although the decision to pull Moe from school has thrown me. We know Moe will continue at home at least through the spring, and likely through the summer. Beyond that will depend on a lot, most importantly whether Moe is ready to go back. I am working hard to separate Moe's need to be at home, the progress he is making in this 1:1 environment, and the choices I make for myself.  It is up to me now to decide how I am going to handle that, whether I can find a way to be happy at home with him or if I need to get back to work for my own sanity.

I am looking forward to sharing 2013 with you all.


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