The Heart Is Searching

I don't share much about our little home, but I love it very much. It is a home to us, while so many places I lived were places I lived.

Tuesday I plan to talk to a realtor about selling our house. If we move two streets over or more, we move into a district that we can only hope will treat us better than the one that serves our cozy, sweet, homey home (with the lovely trees and shady street and indulgent bathroom and best neighbors).

My boy comes in and says, "Mommy? Can I get cozy with you? Can we cuddle up and watch storylineonline.net?" My boy says, "Can I kiss your cheek, mama?" So where he goes, where he finds joy, where people welcome him, that will be our home. My family is my home.

And so many places where he's gone to school have been just places where he's gone to school, and I want him to have a learning home.

Media Alert: I Declare WAR

I have contacted the media.

Tonight, my children and I played a modified version of that good old standby card game, war.

We played for 15 minutes, taking turns, cheering for one another. We all understood the game, and we all had fun.

Never have I experienced this as a parent. I am not sure I can really believe it happened.

My daughter will be seven next month and my son nine shortly thereafter but multiple challenges stand in the way of something as simple as playing a card game together. Tonight, we declared war on those challenges. We achieved a million miles of success.

I have no idea who won the game.

I am pretty sure we all did.

Valentine's Day in the Life

I share this because I welcome any suggestions. 

2/14/13

Dear Principal, Teacher, Aides, and Resource Teacher, and After School Teacher,

Tonight, as usual, we sent Rooster into the bathroom to brush teeth. In a few minutes, we heard sobbing. We found Rooster curled up in the empty bathtub in his pajamas inconsolable. Below are some of his comments, with hesitancy about using names but I think open communication is important and honestly Rooster appears to be in a crisis:

“When I was born, I wanted to be appreciated. At my school, no one appreciates me. I hate it there! It’s not fair.”

“V tells people I’m not smart.”

“I have friends but I lose friends.”

“My aides and my classmates make rules that are not fair.”

“[My aides] are like bystanders! They don’t help me!”

“I don’t have any friends and the people at school are cruel to me! And no one cares!”

“I want to be accepted but no one will be my friend.”

“My school is full of bullies! No one will play with me! It hurts!”

"I feel so lonely and I don't get any respect from anyone!"

He has never expressed these sentiments before, and self expression has long been hard for him. Rooster tends to put on a lighthearted expression at all times at home and to keep conversations brief. This outpouring of emotion and details shocked us. We don’t simply take all the comments at face value, but we certainly respect that this is how he truly feels. We do not know what brought this on, but we are determined to support him however we can. Today is Valentine’s Day, and our son went to bed talking about being heartbroken, and how he wished he could never speak to anyone again at his school.  He used the word cruel a half dozen times, sobbing and clinging to us, which we have never seen before.

We need to meet as soon as possible. We need a plan to support our son and help him feel safe at school. We need a team of support for Rooster. We need it soon.

Please let us know the first available opportunity to meet. Also, please let us know if there is a counselor or school psychologist who could meet as well. 

Sincerely,

Rooster's Family 

On We Go

If you asked me this morning how I feel about the frequent news stories about what might or might not cause autism, I would have told you I don't listen to those anymore.

I have two great kids, autism is part of our deal, and on we go.

For some reason, this afternoon while driving I heard that pregnant women who take folic acid blah blah blah, and my stomach soured.

For a moment, the insidious guilt and worry and insecurity wriggled its way through the crevices around my logic and strength and did a sneak attack on my nervous system.

And then? The rest of my brain mooned it. Just took the low road and one-upped that fearful stuff. Said, "Nuh-uh, you stinkin' drama. Git. OUT."

Ask me now. Ask me how much I care that you could Google up six trillion dozen ways from Sunday how I might have invented autism.

What's that? I am sorry, I can't hear your silly question, I'm going to hang out with two great kids (kids I love and who love me, kids who have a good life and kids I wouldn't trade or change) and autism is just part of our deal, and on we go.

Lessons

I have a new job, and it frightens me how much I like it.
But before I go off on a superstitious rant about that, I have a reason for mentioning this...
Recently as part of my job I had the opportunity to lead a service learning trip to a school for children with moderate to severe autism.
I felt too many things all at one time to know how to explain it all, but some things rang out loud and clear:
I like to be around people who want to treat everyone they meet with dignity.
I like to help people.
I like to learn, to teach, to lead, to grow.
And I love to know there are others who share those passions.

One thing I've been mulling over a bit:
The people at the school we visited said that originally they saw a small population with autism and a large population with Down Syndrome, but that has dramatically flipped, and our group saw only adults with DS who worked there, only children with autism in the classes.

As I said to my group, since there are more and more kids who have autism, in the future there will more and more adults who have autism. We owe it to our entire society to do a better job making the future for ALL OF US the best it can be. We need to invest in education to make the future brighter.

And those are my inarticulate thoughts of the day.

In My Expert Opinion

When I hear people talk about "autism experts" the phrase always gives me pause.

I find myself thinking first about what makes an expert. The dictionary says something like: A person with comprehensive and authoritative knowledge in a particular area.

My mind immediately goes to people who HAVE autism. In a way, to me, THEY are the experts. I am a mom to a boy on the spectrum, and I am nowhere near being anything remotely like an expert even on my case of one. 

Then I find myself wondering, can you be an expert in something you do not have? I always answer myself: Okay, I agree that you can, because doctors are experts in all kinds of things they don't have, like cancer and heart disease...

But inevitably I then consider if you can be an expert -- have comprehensive and authoritative knowledge -- about something that is so large scale and yet so ill defined.

I mean, what IS autism? I know my son has it, I know the boy at the park has it, and yet they are not the same at all. We don't know why they both have autism. We don't know what to predict about their futures. Is there someone with comprehensive and authoritative knowledge about both these boys?

If so, where are they, what do they cost, and what do they have to offer?
Can't these experts get together and do something to contribute meaningfully to the community?

I am not saying that there are not autism experts, but I can't help feeling like there are more people claiming that title than makes sense to me.

Nowhere and Everywhere

I have always had career interests and dreams, and I have pursued them. I did not put those away when I had children, or when we found out my oldest had autism. Two incomes always felt necessary for my husband and myself, for one thing, though I realize we could find ways to live more simply, but also work feels like part of my needs.

Which needs? Stimulation, socialization, satisfaction.

And one more: Usually, work is where things seem to make more sense to me, and I can feel competent.

So today's post is about how awful it feels to have a bad day at work. Not because I have a fragile ego, or because I think one bad day is the end of the world, but because of that otherwise unmet need to feel competent.

I became a mom nearly nine years ago, fulfilling a dream, and bringing joy to my heart. But I feel as though I have been waiting ever since to hit some kind of stride, to feel successful. My children are wonderful, beautiful, lovable people. I am proud of them and I cherish them. Around them, though, I feel so incompetent. So incompetent that reassurance does not help. Logic does not help. It's a feeling I have to own and continue to try to work through inside my own self, and I work on it, and ponder it, every single day.

Last night I had an important event at work, and I did not do as well as I would have liked. I got nervous, my voice squeezed out -- tight and weak -- in a way that embarrassed me, making it worse. It was not a disaster, but it was not what I had hoped, and the disappointment I feel in myself is bitter. I disappointed myself, and possibly others, too. I have to get dressed now and go back to work and face that.

I imagine it would be easier if I started off my day at home feeling strong and capable and successful as a mom. I got up extra earlier, made my kids a great breakfast, wrote necessary notes to teachers, set out warm clothes, and gave them wake-up kisses, but now I am going to try to wrench them from their beds for the third time and I feel sad about it because as wonderful as it is to start my day with my beautiful, growing children, I know that I had far more confidence about last night at work than I do about this morning at home, and look how that turned out.