No Excuses 

It’s You, Not Me 

That’s a Celery Flower, Bitch 

Villages Are Small by Design

I couldn’t pick a single title for this post. Forgive me. Too many different directions I could go in so I choose to go in each today.

Late one evening (I may have had a drink or two) I was chatting it up online with my fellow autism mamas – my village.  I said, “Hey, why don’t we all do a sleepover HERE in October?”  Not really thinking it through on a conscious level that it meant I had to find sleeping area for more than a dozen women in a house the size of a yurt and that my bathroom remodel from April still hadn’t been painted.  But I am blessed to be in a space and time where and when I have found comfort in not freaking out over details like I have in the past.  It’s the bigger picture that matters most.  So it occurred to me that if the party was successful, drunken women on reprieve from motherhood and autism would not give a crap about whether or not my bathroom walls were painted in purple polka dots or not at all.  So I made sure the SGM was on board with it and let the ladies know we were on.  It meant Hub would take The Boy and RM to a local hotel for the night.  I knew I would miss them all but I also knew it was important to let them go and for me to do this for ME. 

No Excuses. 

There are many reasons I feel so lucky to have found a group of fellow mamas who ‘get it’ over this last year.  For one, I struggle with relationships.  I am very good at casual and I do enjoy being around people and having a good time.  Over the last fifteen years or so, I haven’t had many friendships that really stuck.  Not for lack of trying here and there, rather more like an affliction of feeling inadequate.  I didn’t feel like I could get down to the real nitty-gritty of me with anyone because who the hell would get it?  Get me?  Or worse – if they did why the hell would they stick around?  Like George Costanza from Seinfeld, I really felt it’s ME, not you. 

But I figured it out after meeting some of the most incredible people since RM’s diagnosis of autism – I had to CHOOSE BETTER FRIENDS to keep around me.  Don’t get me wrong – not better people – just people able to relate and reciprocate similarly.  Once I mastered that, my social anxieties began melting away and my confidence in who I am began to grow. 

It’s You, Not Me. 

The sleepover was fun as hell.  There were some good stories.  I do recall a slightly buzzed rendition of The Star Spangled Banner in the backyard out by the fire pit but I’m not naming names.  Fine.  It was me.  But DEAR GOD, look at the size of the wine glass I was given – it holds an entire bottle of wine! 

Thanks for the glass, D!

We roasted marshmallows.  We roasted each other, too.  Nothing says love like a damn good joke at your friend’s expense.  Someone made fun of my Martha Stewart-like vegetable garnish.  So I threw it in the fire and politely responded: 

That’s a Celery Flower, Bitch!

Only a fellow Villager would comment the next morning and say, "that is fucking beautiful!"

I felt guilty enough the next afternoon to bring some of the treats left over to the neighbors on either side of our house.  It’s the least I could do after what they had to listen to all evening.  After all, they are my village, too.  A different kind – but just as important.  I didn’t know many of our neighbors really well.  But last year I chose to reach out and share our story with them.  Without hesitation, they came together to line our street with American flags for the SGM’s homecoming and then they celebrated him in our home, too.  We met folks for the first time that night that had lived on the same street as us for nearly a decade.  Many left as friends.  We became a village.

I know there are many who long for a safe, cozy village of their own.  Whether it’s a closer-knit neighborhood or an autism village of people who ‘get it’ – it is incomparable when you find yours.  It doesn’t take much, but it can make all the difference.   Look around you.  Start with a few people you feel the most you around.  And remember that you can have more than one village.  Neighbors.  Autism.  Military.  Whatever.  It is the intimacy you find in others when you can share your unique experiences and feel welcomed – that is a village.

Villages Are Small by Design.

So to recap:  

No Excuses – get out there and DO IT. 

It’s You, Not Me – your people are waiting for you, find them! 

That’s a Celery Flower, Bitch – celebrate the people in your village. 

Villages Are Small by Design – like Cheers, where everybody knows your name and they are so glad you came. 

I am so glad to know everyone in each of my special villages – whether they are geographical or social or emotional.  Love you all.

I’m not much for tears.  I mean I am capable of producing them and I do on occasion.  But at the moment they are pouring down my face and I can barely see what I am typing.

We had a monthly review at RM’s outplacement school yesterday.  It has been six months since she started there.  This was the first review the SGM was able to attend, so I was anxious for him to get to see the amazing things the staff is doing with RM. 

It went very well.  It was organized a little differently than a typical review because the staff wanted SGM and I to help them complete a survey first.  So rather than get to see RM at work right away, the grownups gathered in a conference room.  We were asked a few dozen questions about situations that may be stressful for RM.  For example, on a scale of 1 to 5 – how stressful is it to RM to take a trip to the grocery store?  Those kinds of things.  It was designed to help staff tailor goals and objectives to make life a bit smoother for her. 

Overall, it proved that RM is a pretty happy kid and though some situations are extremely stressful to her, many are not so bad. 

As we wrapped up the discussion so that we could head to the review room and see RM, we stopped on the topic of ‘fear’.  Well.  RM lacks fear of danger, like many of our kiddos with autism.  She is getting better at not running out into the street, but that’s from lots and lots of consistent programming – reminding – her not to just step right off the curb.  She doesn’t actually know that it is dangerous out there and if we weren’t around to remind her, she would totally run in front of a car without hesitation.  She has no fear of water and though she isn’t exactly a wanderer, she does have a pretty stubborn sense of independence.  Sometimes just being able to open something (like the door to the garage) is fun to her. 

So we concluded that an ID bracelet is a really good idea.  The staff will work-in a tolerance program during the school day to get RM comfortable with wearing the bracelet.  The goal is that eventually, she will wear it 24/7.  It was a great idea and at the meeting I felt comforted and relieved at the decision. 

But then this morning, I actually had to order one. 

When I clicked ‘Pay Now’ it was like a stab in the heart and the tears just started pouring. 

It hit so very hard that I am essentially putting a real, tangible label on my child.  

She has: ‘AUTISM.  If lost call 911’ 

I’m still crying.  It still hurts.  Not because of the autism itself.  Not because of who my daughter is.  I hurt because of the dangers that exist in this world and my beautiful daughter’s inability to protect herself from even the smallest of them. 

I cry because my daughter is SO MUCH MORE than a label around her wrist. 

I cry because no matter how much it sucks, I will do ANYTHING I can to make this world safer for her.  ANYTHING.

I’ll even slap a label on her.

Because I love her THAT. MUCH.