Moment of Truth Monday - The B Word

Everyone once in a while, six year old Johnny tries to see if I'll give him permission to say the forbidden words. A few months ago, he asked if he could say the "F" word out loud to me so he would know if he was saying it correctly, and then be able to successfully avoid saying it.

Tonight, driving to the social worker, it became clear that he was worried his older brother might also fall into the same trap.

Johnny: "Mom! Someone wrote the B word on the bus! But you know what? They spelled it wrong! They didn't spell it with the "t" in it, is was just spelled with the "ch" after the 'i'! But I KNEW what the word was. Do you know what it is Mom?"

Me: "I do know what the word is, Johnny."

James: "Can you stop talking now? You're bothering me! I don't even know what you're talking about."

Johnny: "Mom! JAMES DOESN"T EVEN KNOW! Can I explain to him that it is the bad word that starts with the "B" but it has an "i" and a "t" and THEN the "ch"? Just so he knows what the word is?"

Silent pause in the car...

"Mom? is it OK if I explain that to James so he knows?"

Then a little more quietly: "Oh. I just did, didn't I?"

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

Lost and Found

My friend wrote a post last week that I haven't been able to stop thinking about. You can read it here. I've read it at least 20 times and keep trying to comment on it, but then delete the comment each time.

The comment I so want to leave is "Exactly".

Before I was an autism mama, I was a soccer player. A landscape designer and gardener. A scuba diver, camper and snowshoer. A play-pool-at-a-fun-dive-bar friend.

One day I was all those things, and then the next I just wasn't.

Because starting that next day, it was 20 hours a week of therapies. Of endless waiting rooms. Of overwhelming paperwork and IEP meetings.  Of pouring over books and websites to learn everything possible I could think of to help my child, while at the same time trying to actually take care of my child. Both my children.

Those needs are unrelenting. They won't wait for a coffee break or a private shower. They certainly don't leave time for a Doctor's appointment or gym visit. I felt selfish thinking about doing such things, because my children needed me to do things to help them. I was too tired to do them anyway. Why bother adding more to my list of places to go and things to do? I convinced myself I'd do something for myself when things calmed down.

Things didn't calm down.

Autism took over my life, and all those other bits that make up who I am got buried. Buried so deep I didn't even try to find them anymore. After awhile I just stopped thinking about them.

They were long lost, and I felt like I was losing myself.

I realized I needed to find some of those things, the ones that made me feel good about myself. Luckily, that realization came the same week I was to go away on my first girls' trip in over 15 years.

We went to a friend of a friend's for a night down the Cape. 12 of us. All moms of kids with special needs. All moms who needed a break, to relax. To breath. To laugh.

This was my Facebook status update on Saturday night:

Playing pool in a dive bar in P-town. Life is good. And amazingly familiar...

And then, Sunday morning we all just sat around together in the living room in our pajamas, drinking coffee and telling stories. And laughing.

I felt like I could breath again. I couldn't even believe the difference it made, just to get away and be myself again. Just to hang out with friends and not be on guard. To find that play-pool-at-a-fun-dive-bar part of me that was lost. In bringing that to the surface, I feel like I found where all the other bits of me have been hiding. 

5 days later, I still feel renewed. I'm pulling from the energy I got from being with my friends.

I know I'm not going to be doing all those things I used to on a regular basis. And I'm OK with that. My life is so different than it was way back then. I wouldn't change it with anyone in the world. But if I can remember those things and how they are also part of who I am, then I can pull them out when I want to. When I need something to draw strength from.

I made that doctor's appointment. I called a few people about doing their gardening. I'm going to the Flutie Bowl Monday night with these same friends.

I'll do it little by little.

Note: The women from the post I linked above are calling this The Year of the Oxygen Mask. The name couldn't be more appropriate. We need to make sure WE are healthy - physically, emotionally, and mentally, in order to be able to help our children.

The Oxygen Mask Project website tells stories from parents, like you and me, who are taking steps to make sure they take care of themselves. Visit there to get ideas or strength. 

There is also a Facebook page where you can get support and cheer each other on. It is a place where you can tell someone you took a walk and it felt great, and you will be understood and applauded. It is a place you can simply write "help", and you will receive ideas and encouragement from people who get it.

You can also find support on twitter by following @OxygenMaskProj and by using the hashtag #yearoftheoxygenmask.

I know it is hard to make changes if you are doing it alone. Please tell someone if you are struggling or feel lost. Do something for yourself. You'll be amazed at what a difference that something can make.

xo

Kris