disclosure

Just a short post this morning, on a small incident last night that got me thinking.

I had my first rehearsal last night for Manon Lescaut. I love going back to rehearsal, and part of the fun is seeing my fellow singers and catching up, as we only see each other for big chunks of time every couple of months. This makes for an unusual situation, though. Whereas in a typical work situation, like Ben's, probably everyone would eventually know I have a daughter with autism. I haven't been at the opera company all that long and tend to be an overly private person, so many people don't know there. Most of my fellow opera-singer-moms know, and the one other mom who also has an older boy with pretty low-functioning autism.

Maybe I assume everyone on Facebook knows? Maybe I assume everyone understands about the difficulty in raising a child with special needs? I try to remember what I felt like

before

Violet's diagnosis. What I thought when I heard someone's child had been born with or diagnosed with autism. I'm pretty sure I pitied them.

Shame on me.
And how much this little lovey girl has taught me since then.

But, back to last night, chatting with several women, one of whom has a boy a few months older than Oliver and Violet. We've talked throughout the last four years, casually comparing them at different ages and laughing. Tonight we brought up readiness for kindergarten, and both seemed to feel the same way: uncertain but not wanting to push them too much, etc. Then she suddenly said, "My husband and I met this other couple with a 4-year-old with special needs, and, like, we try not to make fun of them for being so panicked, but, come on! EVERY child is "special". Every kid has "needs"."

Shit.

The statement hung there with a silent, "You know what I mean?" left in the air.

It wasn't the time or place to announce my situation, but I certainly wasn't going to nod or agree. The subject was quickly changed and off the conversation went. But the words sat in my stomach like a pit.

So many people, even smart, articulate, child-raising people must think this way. Is it my responsibility to stand up and explain/defend/educate? I don't want that job (thanks!), but I feel like I'm betraying my girl when I leave those silly words hanging there, unaddressed.

No clever ending here. Just a mama learning to toe the line and keep things right with her heart.

my sweet boy

Ben and I often talk about Oliver. The fairness of our lives for him, how much he has to compromise and understand at such a young age. It's so difficult to balance making sure he has as "normal" a life as possible with teaching him what being a brother to a girl with autism entails and what a huge help he is to her.

He surprises us daily, jumping in as her best friend, guide, example and teacher. Obviously, they have fights and tangles and arguments, but even that is a blessed reminder of their "typical" sibling relationship.

And then, Ollie suddenly astounds us.

I had my final performance of Romeo et Juliette on Sunday, so Ben took the kids to McDonald's (or Old McDonald's, as it's called in our house). They have a play land and some indoor games, and, of course, all the ketchup a three-year-old could ever dream of. After eating many things smothered in ketchup, the twins headed to the air hockey table, where a nine-year-old girl was playing. They joined in, as a team on the other side.
After a few rounds, the girl didn't understand why Violet was just standing there. She said to her, "You need to move your paddle! You need to block the puck! Why aren't you using your paddle?". It happened a few times, and the girl was getting pretty frustrated.
Finally, Oliver put his paddle down and walked over to the girl.

He said, "Um...My sister.... um...do you know what is autism?"

Reader, I can't even believe he knew to say "sister" much less "autism".

The girl did not know what was autism, and he didn't get much further with his explanation, but he did get her off Violet's case.

Does it get more beautiful than that?

My boy is a good person. He defends his sister, and explains her. At three.

Ben called me while I was backstage to tell me the story, and, needless to say, I sat there crying in my fancy gold sequined shorts (did I mention this was a modern retelling of Romeo et Juliette?).

My sweet boy.

violet's loving all ponies, all the time.

violet with Marie, her therapist at the farm

a kiss for Mr. Cotton, the huge bunny

Ikea snuggles



family day!





such love



small victories

One of the great things about having a child with special needs is that every small step we take becomes amazing.
Every "normal" day becomes extraordinary.
Every special thing that happens is multiplied by 1000.
Every outing we survive without, say, vomit (Violet's), injury (mine) or an enormous amount of tears (any of us) is a huge accomplishment.

Here are little yet phenomenal things that have happened lately:

1. After dropping the twins off at preschool, another mom asked if I was Violet's mom. She said she had heard all about Violet from her daughter, and they had shared a seat on the bus together to the pumpkin farm. Your daughter talks about PLAYING with my daughter? My daughter PLAYS with her? And sits WITH her on the bus. UNREAL.

2. Knock-knock jokes are in full swing in our home. One of the many (many) reasons I'm glad I have twins- they can knock-knock to each other for an hour and I just have to listen. Here's their favorite:

Knock knock
Who's there?
Banana
Banana who?
Banana come to the door to say hello!

and then they laugh hysterically.

3.  For as long as I can remember, Violet has smacked me in the face whenever I sing to her. It's very disheartening, not to mention painful. I try to tell her that sometimes people PAY mommy to sing, but she won't have it. We've been working in therapy on getting her to use her words instead of lashing out or screaming incoherently when she doesn't like something. FINALLY, yesterday as I was singing the clean up song, she approached me, and I braced myself she got within inches of my face and murmured,
"no sing, Mama!!"
Beautiful.

4. Speaking of singing, I performed in this last Saturday. It was the first time the twins saw me at "work" and with about 600 people there, I was so apprehensive about bringing Violet. She did so well! Plugged her ears, yes, but stayed, listened, smiled when they lit up the Christmas tree. And, so worth it, as Ollie and Violet have been serenading me with "ha-yoo-yah!" ever since. Big time smiles.

5.  Halloween. The kids had a blast over a VERY busy weekend. Violet had a little bit of trouble with some of the noises (or rather, she anticipated a lot of noise), so spent a great deal of the evening with the hands covering her ears. But I think that's okay- she knows what bothers her, and she's found a way to help herself. For now. Oliver was Larry the Cucumber and Violet was both a bunny and then a chicken (a quick costume change is always appropriate on Halloween). Neither of my kids like candy (Yep. NO clue how that happened, and I know it won't last much longer), so were content going from house to house with their buddies and looking at the other kids' costumes.

That's all for today, although my head is FULL of other amazing things I could write about. Honestly, I could also easily think of a handful of worries, concerns and stresses, and maybe that post will come later.

But maybe not. Funny how the blessing always seem to overtake everything else!

ollie and vi picking pumpkins on the school trip. these were photos that our beloved ABA therapist who shadows violet in school texted me. Can you imagine getting these on your phone?

busy babies...

Violet channeling her inner Cinderella...

Oliver using his "Yabba Dabba Doo" foot power to drive the car...

keeping Mama on her toes!

wonderful kisses....

we've found a new place for the babies to play! It's an indoor place called "The Treehouse", and the twins love it. It's filled with all sorts of wooden toys, things to ride on, a mini slide and tunnel, books, puzzles, etc. There's a place to have snacks, and it's all padded, so the babies can go off on their own (kind of), and have a great time. They've done really well interacting with the other kids; I guess they've never known anything BUT sharing! The best part is that this is something I can take them to on my own, which I haven't been able to do with any other activity yet. There are almost always other mommies of twins there, as well, which has been great for me and the babies!

Lots of new busyness at home, as well. This morning, I heard nothing for 60 seconds, which I'm quickly learning is trouble. Oliver had climbed into the oven. Yes, into. Terrifying. So, now we have latches on every appliance in the kitchen, and most cupboards. I thought having a foot-activated lid for our kitchen trash would be enough, but Violet has taken to pushing the can across the room, like a push toy, and then tipping it over.

Last night, I started rehearsals for "Fidelio" at OCP. What a world of difference for me compared to the last opera I did in February! I felt so confident leaving home last night, knowing my toddlers would be happy babies for Grammy and Dada, and go down ok for them. And how wonderful knowing I could come home afterwards and not have to fear Violet waking up and needing to be rocked, or having to do sleep training with Ollie. I love this age! Such happy, beautiful babies.