May they rest in peace

-

To the family of Mikaela Lynch,

To the family of Drew Howell,

To the family of Owen Black,

I am so sorry for your loss. I know the incredible joy and love that these children brought to their homes, schools, and community will be missed deeply by so many whose lives they touched.

While I never had the privilege to meet your incredible children, when I look at their pictures, I recognize a bit of my own child in the sparkle of their eyes.

We don’t know each other, but we have walked similar paths. Elopement is not an issue with my autistic son, but I know what it is to have a child with whom you must have constant vigilance. I know what it is to feel the judgment of others who have never walked a day in my shoes.

But, I also know the embrace of a community with arms outstretched in love, and understanding, and an earnest desire to be supportive in any way they can.

We have never met, but we share that community.

Know that we are here. Know that we see you. Know that we understand how much you love your child and how hard you worked every moment of everyday to be sure they were happy, healthy, and safe.

We know.

Our thoughts, our prayers, and our hearts are with you.

******

If you are looking for help with your child who wanders, please see this link for information about the big red safety toolkit.

******

To link up with the outpouring of support and love for these families please see Sunday’s post at Adventure’s in Extreme Parenthood.

Moments of Grace

I’ve been uncomfortable with the level of frustration I left things with in my last post. Not because I thought there was anything wrong with feeling overwhelmed and frustrated or expressing those feelings. I’m ok with that. It’s honest. It happens. I am always a better parent for being open with with the hard stuff.

No, I’ve felt uncomfortable with it because it only tells part of the story. In telling you that things have been tough, really, really tough for a several weeks now, it misses the parts where its not.

And there are so many moments when it’s not.

Moments when without complaint the boys carry laundry baskets or unload the dishwasher because The Professor hurt her back and can’t easily bend over.

Moments when I stop by the school and Charlie’s aide produces a packet of M&M’s from her pocket, telling me with a smile how Charlie had saved it for her from his lunch because she had once told him she liked them.

Moments where Charlie is screaming at me about how mean I am and how I am never nice to him and how I don’t seem like I like him at all. I reply that I am sad that he feels that way because I love him more than anything, he stops and says simply. And I love you, Mommy.

On our darkest of days, even our darkest of moments, it’s never all bad. There are so very many moments of grace.

Pure, simple, loving moments of grace.

The kind that I would surely rush past without noticing if I didn’t have a child who required that I so often tune out the rest of the world and stop. Just stop for a second and focus on exactly what’s in front of me. Nothing more.

Because moment by moment that’s where the good stuff lives.

Hard

–

Things with Charlie have been hard lately. There seems to be a change in him. He seems to run a baseline of agitation. It takes very little to make him explode.

It means he is getting into more trouble at school and in his after school program. He is having to be pulled from the group settings more often. He is refusing to come in from the playground after recess. He is taking swipes at staff and spitting on people. Behaviors, I had once more let myself believe were behind us. Last week he walked out of class and ran outside and hid because he says he wanted to and they told him no.

At home he is angry. A lot.

Most of the year he got through his mornings easily. Breakfast, brush your teeth, get dressed. Sometimes I would have to check in and remind him about the next step, but he did it happily, even adding on picking out his own outfits at some point. Now every morning is a battle. He angrily refuses to do his tasks. He yells at me. He kicks me. He locks himself in the bathroom. Everyday.

Yesterday he simply refused to get on the bus.

It is exhausting. It is demoralizing. And while in my head I know he is doing these things because he is struggling in a way I haven’t quite figured out yet, in my heart it is hurtful.

So, I have been struggling.

Struggling to remind myself that behavior is communication. Struggling to remember the angrier he gets the calmer I need to be. Struggling to remember the simple things I need to do to keep myself healthy, exercise, eat well, enough sleep. Struggling to remember to reach out, to admit I am struggling, to say today was really fucking hard.

I am letting myself panic. I am worrying about how I will juggle my job if he gets kicked out of his after school program or out of summer camp which is just around the corner. I am worrying about how I will keep it together if we go down the very scary path we faced last year when he fell apart.

Luckily, I am married to someone who gets much less carried away by her emotions than I do. The Professor is much more practical. When I angrily confronted her with not being as concerned as I am and my need for her to see this as the crisis situation that I believe it is, she replied simply, practically, in her manner it didn’t matter what we called it. We just need to back up and use the tools we already have and go from there. We aren’t doing everything we know how to do yet. Let’s start there, she says.

Yes. Let’s start there.

We created picture schedules for him tonight for every part of his time at home. A picture calendar for the next few months. We committed to getting him at least an hour a day soaking in water whether it is the pool or our tub because that is what brings his body the most relief. We have committed to simply avoid power struggles. If he does not do his homework some nights he will be ok. If he does not make it on the school bus, I will drive him. If, as he says now, he does not want to go on a long planned trip to Boston next weekend then we figure something else out.

My son has a lot of tools. For whatever reason he is not using many of them right now.

But, I have tools too.

Wish us luck.

Charlie’s friend and a new set of social rules

So Charlie has a friend.

He is very excited about him and he sits around saying the boy’s name and smiling and then saying his initials and smiling and so on.

It’s adorable.

It’s contagious.

It makes me wish I could go out and find a new friend I like so much just saying their name gives me the giggles.

Being six is awesome like that.

I love that he is having those moments.

But, it ramps up the social complexity for him.

He is finding himself in over his head more often trying to be near his friend.

Until now his recesses have consisted of him flitting between groups on the playground always watching, observing, doing a sort of parallel play on the outskirts of the group.

But, now he is trying to play soccer with the rest of the kids on the playground to be near his friend.

Luckily, he does quite well athletically in anything that involves sheer strength and endurance.  He is tall and strong and his aide has wisely convinced him to play goalie, allowing him to showcase his strengths and minimizing areas where he might struggle more.

But, soccer has rules. Rules that kids on the playground don’t always want to follow.

Sometimes the kids touch the ball with their hands. You aren’t supposed to touch the ball with your hands in soccer. This is against the rules. Charlie feels the need to point it out and then is thrown wildly by the fact that no one else seems concerned with following the rules even though they know they broke them.

He gets angry. He starts yelling at people. He ultimately gets so overwhelmed by being the only person concerned about the injustice that he flings himself on the ground crying and flailing his arms.

They don’t always follow all the rules on the playground, I tell him. It’s more fun to just keep playing than to stop and worry about that stuff all the time. Do you think you can just enjoy running around and kicking the ball? Maybe don’t worry about who is following the rules and just have some fun, my love?

IT IS NOT FUN IF PEOPLE DO NOT FOLLOW THE RULES. IT IS NOT FUN WHEN PEOPLE TRY TO CHEAT.

He is agitated like this a lot lately.

But, they aren’t cheating really, Charlie. They are just taking it less seriously. It’s just supposed to be fun. Maybe you could try to assume people mean well and then just ask them why they didn’t follow a rule instead of getting so mad or assuming they intended to cheat.

BUT THEY ARE CHEATING. THEY ARE CHEATING AND JUST TRYING TO BE MEAN TO ME BY CHEATING AND NOT FOLLOWING THE RULES.

But, they don’t mean to be cheating, baby, there is a difference. Can you see it?

THEY ARE JUST CHEATING. THEY ARE DOING IT ON PURPOSE.

You get the picture. We go around like this. I want to help him. I want to explain the subtlety to him or at the very least create a black and white rule that he can use to keep from getting so mad at everyone. But, it’s not working.

My assumption is that he is simply out of spoons because of how hard he is working to navigate a  social landscape he has largely ignored until now. I understand how much effort that takes, just existing and surviving within it.

Perhaps right now there really is no fixing this for him.

I watch him outside playing as I type this. Our new neighbor, a four year old girl, has taken his bug vacuum from his hands and is wandering around waving it in the air. I watch him ask her nicely a couple of times before gently taking it back from her and letting her wander off on her way.

I am reminded of a time when he was sent home from preschool after having bitten a younger, smaller, non speaking classmate. I told her to move and she didn’t answer, he had told me by way of explanation. She didn’t follow my rules, he had said, She needs to follow my rules.

He is not that boy anymore. He understands how to maneuver these interactions successfully now. <Usually>

One day he will likely have built an understanding around these latest struggles too.

So for now it’s my goal to just sit back and soak up every bit of his joy as he giggles and smiles and repeats his new friends name over and over again.

Just a little bit of sorting

–

So I have lots of things I want to share with you. I do.

But, first there is this little thing I have been saving and wanting to show someone who could really appreciate how awesome it is.

Lots of things happened while I was away from here.

Lots.

<Including me road tripping with the boys 13 hours to Tennesse for their spring break week.>

<By. Myself.>

<Which was really incredible.>

<Until it wasn’t.>

But, first there was Easter.

And the boys went wild running around the house collecting their eggs, and stuffed bunnies, and candy.

Then, when all was gathered, Tommy sat down to the serious business of gorging himself on candy.

And, well, Charlie sat down to the serious business of doing this.

I think it is so fantastic I was afraid to share it with anyone who would not get the beauty and importance of sorting and organizing your candy by rainbow color before eating it.

But, I knew you would.

Because we don’t get to walk away from advocacy

I got a call one afternoon two weeks ago. It was the school bus transportation office telling me that Charlie had attacked several people on the bus and was now hiding under the bus seat outside of his after school program refusing to move.

This was by no means the first time I’d gotten a call to tell me my son was out of control in some setting I was nowhere near. But, they never get any easier to process. My mind raced in a million directions at once. He must be so terrified. I need to get to him. What the hell happened?

After discovering the woman on the other end of the phone had no information about why this was happening or what came before this or even what they planned to do about it, I grabbed my keys and ran for the car. A few minutes later the same woman called me back, the counselors from the after school program had gotten him to get off the bus. That was all she could tell me.

When all the facts had been gathered later that evening it became clear that the adults charged with his care on the bus had made a series of deliberate decisions in which they provoked Charlie into this meltdown.

There were emails, there were phone calls, there were meetings. I am told there was yelling and a lot of anger and I am grateful to be reminded The Professor and I are not the only ones whose mama bear claws come out when it comes to Charlie. In the end, that day was the last day Charlie would ever again have to interact with those bus personnel.

Whether these people’s actions were done out of malicious intent or simply gross ineptitude, is a truth known only in their own hearts. But, for me, I have to believe it was the latter, because that I can do something about.

A few days later at the school the assistant principal took me aside in the hallway to touch base on a few details of the new plan.

You know, you guys are really great advocates for you son, she tells me, acknowledging just how far we have come since some very tense interactions we have had in the past.

I pondered this later. I have come a long way. I am a good advocate these days.  For my son. But, I wondered, am I doing enough about being a good advocate period?

I walked away from this blog a few months back for a bunch of personal reasons, some that I listed and some that I did not. Those issues still exist. They are still valid concerns. But, I no longer believe stopping the conversation is the right thing for me to do.

I am grateful that Charlie is surrounded by so many who can see that sometimes his behaviors are his communication. But, there are still far too many out there who can only see his behavior.

Until the day comes when this is not the case, I don’t get to walk away from the conversation about autism. For my son. For every other child on that bus. Particularly for those who are not able to relay a word for word version of what is being said to them the way Charlie can. For all of our kids, there is no walking away from the conversation. Where ever, whenever, however it can take place.

I’ve now lived more than half of my life as an out lesbian. I’ve seen a lot of change in those years. I’ve seen the peeling back of layer after layer of ignorance. So much more than I could have ever dreamed possible when I first came out. And while there are many reasons for this change, in my opinion, the single biggest factor has been the willingness of thousands upon thousands of people to stand up and live their truths out loud.

Every person who has countered ignorance with education, who has met hatred with openness, who has understood that just by living their lives honestly they are forging a revolution, has brought us to the brink of an historic equality in this country.

I want the same for my son. I want it for all our children. Hell, I want it for every single one of us. Because we are all better off when we live in a world of acceptance, where our differences and talents are celebrated and our needs are supported.

So, I am back. I am here. I am writing.

It is time to live out loud again.

It is time to have the conversations where ever, whenever, however they can take place.

I don’t claim to have all the answers nor to think my little blog can change the world.

But, I’m damn sure gonna try.

Outrunning The Storm celebrates 1000 Ausome Things #AutismPositivity2013

1.

So what is my Ausome thing about Autism?

It’s simple.

It’s last week at the dinner table. My NT son Tommy asks why his autistic brother, Charlie often falls asleep on the bus.

I muse that I had always assumed the movement was soothing to him, before asking Charlie if he knew why.

I just like to listen to the motor. If I push my head against the window I can hear it better.

Tommy and I sit back for a minute pondering what is a new idea for both of us.

I guess I never noticed the way the motor sounds, I say, I will have to pay attention to that. Cool.

Yeah, I think I just like to read or talk to my friends, Tommy shrugs and returns to dinner.

The Professor gets a twinkle in her eye and says how when she was little she used to try to sing along to the car engine because it sounded like such a pretty song to her.

Charlie gets a huge grin across his face and says simply, You’re Autistic, Mama.

2.

And that’s it.

That is my one Ausome thing about Autism. That is my 1000 Ausome things about Autism.

It’s my family. It’s the thing I cherish most in this world. It’s the people without whom my life simply wouldn’t be complete.

It’s an exploration of the different ways we all experience the world.

It’s the song of a bus motor that not everyone can hear.

3.

Autism is a thread that weaves it’s way through so much of my life. A thread that can not be disentangled from so much of what I love.

And the thing about love is, it isn’t always easy.

It can take a lot of work.

Sometimes it tears you down and strips you raw. Sometimes it can feel like the sheer weight of it might crush you.

Sometimes it feels so achingly precious you want to wrap it up tight in all of your hopes and fears and dreams just to keep it safe.

Ah but sometimes, sometimes when we finally just let go, when we free the last of what holds back our hearts and we just let it happen. In those moments when we feel it, bursting like a spring river though every vein in our bodies, it can lift us.  It can show us our world. Ourselves. Our possible. In a way we’d never before imagined. In way that will change everything. Forever.

4.

That is my love.

That is my Ausome.

That is my Autism.

Why I will be writing in the autism positivity flash blog this week

One day last spring I logged into my blog to see the phrase “I wish I didn’t have Aspergers” in my search engine stats.

I knew which of my posts google had brought the searcher to. It was a story of my NT son Tommy asking me if I wished his brother didn’t have aspergers.

It was one post, chronicling one point in my journey.

I thought it was loving. I thought it was accepting.

But, it was in no way what I really wanted to say to this searcher.

As the days went on, I found myself lying awake in bed at night thinking of this google searcher, pondering ways to get them to come back.

There was a conversation we still needed to finish. There were words left unspoken.

It’s not that I thought I had the answers or that I would presume to know what it’s like to have aspergers or to wish I didn’t.

But, I know what it’s like to feel alone and afraid.

I know how it feels to type desperate words into a google search box. I know what it is to wish and pray with every change of phrase that this time it might bring you back an answer or some help or maybe just a little bit of hope.

I may not have the answers for this searcher but I could be a place of hope in the vast sea of search results, couldn’t I?

I could be a virtual hand to hold, a friend to just sit near. Someone to say, ‘I hear you. I see you. You are not alone.’

I just needed to get them to come back.

***************

I brought my thoughts on this to a group of bloggers, both autistic and allistic, I was a part of and watched as these amazing and talented people transformed this seedling of an idea into what would come the be the Autism Positivity Flash Blog.

From then on whenever someone types that phrase into google, they are brought pages of people reaching out to them, maybe with some of the answers they sought, maybe with a helping hand they need, or maybe just with a little hope.

My association with this remains one of the most wonderful things that blogging has brought me.

****************

My last entry here was to say good bye. A descision I have agonized over before and since. I have grieved the loss of my place here, on these pages and in this community.

I walked away, took a break, and buried my head in the sand to all things autism and blogging in an effort to avoid the questions I couldn’t answer for myself and the hard conversations I didn’t know how to have.

That is until this past week.

A week that reminded me of how my boy pays the price for the ignorance that still swirls around autism.

A week that reminded me that the hard conversations need to be had, but if we are careful they don’t have to alienate.

A week that reminded me that these blogs are so much more than some words on a screen, that there is connection and community here. That what is happening here means something to me and it means something to others.

A week that brought me an email from a dear blogging friend, reaching out a hand to check in, and to invite me to participate in this year’s Autism Positivity Flash blog if I felt able.  A friend who reminded me there is work yet to be done.

So, I don’t yet have all the answers to my blogging questions. But, that’s not important.

I will be writing in the flash blog on Tuesday because what is important is that there are still so many searchers.

Many of them continue to find their way to my blog.

For them and everyone else who is searching there is still a conversation we need to finish.

There are still words left unspoken.

****************************

If you would like to write something for the flash blog as well you can do the following.

1. Publish your post on April 30th in the following title format: “ [Your Blog] celebrates 1000 Ausome Things #AutismPositivity2013″

2. Share your post on Twitter, Facebook, and any other social media site using that hashtag (#AutismPositivity2013)

3. Add your link to the Autism Positivity website submit here

1000 Ausome Things #AutismPositivity2013 Flashblog Announcement

Reblogged from Autism Positivity Day Flash Blog:

• 

We know you have been waiting... and we have been working and organizing behind the scenes. Now we are ready and we are excited to announce the theme for the second annual Autism Positivity Flashblog Event on April 30th, 2013: "1000 Ausome Things #AutismPositivity2013"

Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person's Google search "I wish I didn't have Aspergers".

Read more… 239 more words

It’s time to say good bye

These last several months have been silent ones for me here in blog world. I’ve been wrestling with a lot of ideas about what blogging should mean for me. I haven’t wanted to write much about them because it seemed like a lot of navel gazing in the end, but it’s been confusing and it’s left me largely quiet.

Last year Charlie specifically asked me to write about autism and loved sharing his uniqueness with everyone. This year has been different. He has been clear in multiple instances that he wants to be in control of his own story and how it’s told. This is a beautiful thing. I couldn’t be more pleased about it. But, it’s left me with a quandary for how to proceed here.

I believe with all my heart that I tell our story here respectfully, always with my mind on making the world a better place for him and others on the autism spectrum. I have come up with a million reasons why it is ok for me to continue to blog.  But, every time I sit down to write, there is a thought in my head crowding out the words I want to be writing. A thought that says I am a hypocrite. A thought that says I am not respecting my sons wishes and it is simply not possible for me to ask the world to show him respect, while I do not offer as much myself.

The second part of my silence has revolved around Tommy. My not-so-typical, neuro typical child. A boy who simply overflows with all that is gentle and kind. A boy who seems to have the the idea of putting others first written into his DNA and who has been born into a family where that has often been required of him.

He is my child who is struggling this year. He is where my energy needs to go for now.

I have come to understand recently that in their own ways, both of my children are showing me it is time to take a step back. They do not want me to live and breath autism as I have for so long now. They need me to open up more space in my thoughts and my heart to take in a greater slice of the world and share it with them.

I have spent a lot of time trying to understand my reasoning for not wanting to let go, despite the fact that I know it is time. There are a host of reasons I can share, but in the end I realize it simply comes down to you. Yes, you.

Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin

Each and every one of you, from those I have formed true relationships with to those who have been reading and never yet left a comment, you have opened up new worlds with me and it is so painful to let you go.  But, know the gifts you have all given me remain close to my heart always, a heart that is forever changed by the worlds we have created together.

my love to you all~