Saturday, January 28, 2012

where we've been...

mostly here.....


and not in the relaxed, therapy appointment kinds of way. In the ER way. Twice, in one week.


visit one:
Sunday morning. Oliver had a stomach bug (third in six weeks, for those of us keeping track). He had a seizure the morning after it started, and it scared the hell out of me. We were at CHOP for two days, but in the end it was decided to be a febrile seizure - meaning very common (who knew?) and no need to see a neurologist (unless it happens again...).
Big boy was crazy brave, and CHOP was amazing. They put an IV in his arm (see blue cast thing to protect it, below), and I was reading him "Fox in Socks"** as they put the needle in; reader, the expression on his face never changed. Brilliant.


yep, paci came back. priorities, people!


feeling brave

visit two:
Friday. Violet was bitten in the face by my mom's dog. So horrifying and heart-breaking. SHE'S FINE, but it was an awful experience. I can assume (as I was in the other room....awesome) that Saydah was asleep and Violet gave her a big mama-hug, as she loves to do and startled her.
One of my (many) dreads in the world of autism has always been taking Violet to the ER- every time Ben and I have brought Oliver in (and I'm pretty sure this trip #6 for him) we say to each other, "Can you imagine if this was Violet?" and shudder.
She did beautifully, though, surprising us yet again with her resilience and fearlessness. Girlfriend is bleeding profusely from the chin, and calmly reiterating to any nurse, doctor and maintenance worker that no one is allowed to look at her ears. Irrigate the wounds? No prob.

post-irrigation, pre-stitches.

so, so tired.


at home, 3am with mama. feeling fortunate.







And, as much as I don't want my baby girl to have a scar on her chin, it's in the shape of a 'V', which has a coolness about it. Maybe a little bit magical?


























** I recommend never choosing a Seuss book to read to your child in the ER, particularly 'Fox in Socks'. I might as well have been reading Japanese.

Wednesday, January 4, 2012

social

I debated a while before attempting to write about this one. So much holiday stuff and family and friend stuff to write about, but I keep stopping and starting this one, so I must get it "out". The story is so detailed, and I worry that my posts can be superfluous and overemotional. But often when I blog about my dilemmas, especially regarding my girl, I find them better sorted out for me.

We have been really pleased with the twins' preschool. It's a wonderful, creative atmosphere and all of the administrators and teachers have been wonderfully encouraging and understanding with Violet's diagnosis. Meeting other parents has been a bit of a challenge for me for several reasons: I have two to wrangle before and after class, so I can't be as casual with my chit chat; I have V's therapist who comes out to bombard me with information from the moment I arrive to pick up my kids (difficult because not only does it alienate me from socializing, but it also draws attention to me as "the mom of the kid with the therapist").

That last part is tough in itself. I'm generally a private person, and especially with a child who is already 'atypical', I want to do everything I can to assimilate her with her peers, and not draw attention to her therapist. Unfortunately, this diagnosis doesn't allow for a lot of privacy. Squeaky wheel and all that, yes, but also safety concerns and the whole knowledge-is-power thing.

We often stop at the playground on our way out to the parking lot. I love it- watching my kids interact with the peers, and really seeing my girl making friends. On this day, one of the moms, of a girl I'll call Julia stopped me and told me that Julia really wanted a playdate with Violet.

This has never happened. Seriously, not only has anyone asked V for playdate ever, but if I had to guess who'd want to be buddies with her in her class, Julia would be at the bottom of my list- I didn't even know the child's last name, and the mom had even made eye contact before this invitation.

I stammered and hemmed and hawed my way, graciously thanking her, saying maybe we could set a date soon. I didn't even know the right questions to ask, so I kind of left it like that to buy myself some time to process it all. I immediately texted my sister, my mom and Violet's aide at school- giddy.

Then the reality of it set it.
That evening, I had a nightmare that Julia's family lived on a lake, and, in my quest to give my girl a normal/typical playdate, I hadn't told them to lock all of their doors so Violet wouldn't run out, and, in my dream, she fell in the lake....

It took about a week until I ran into Mrs. Julia again, and by then I had talked it over with V's therapist, my mom, my husband, and, of course, the little social bug herself. All agreed it was a great idea, but that I really needed to prep Mrs. Julia.

Did she even know Violet has autism? Does she know anything about her? Does she have breakable items within reach? Does she have a supply of Smucker's PB & J's in her kitchen?

I approached her, words planned in my head like a freaking 15-year-old boy asking a girl out for the first time. We chatted casually, and the playdate came up.

"Um, I'm not sure if you know this, but....Violet has autism."

Her whole face dropped.
She was shocked.
"Wow", she said, "She must be really, um, high or low or whatever that is...I'd never have known."

There may have been an "Are you sure?" in there.

Do I tell her that, no, while Violet may eventually be diagnosed as high-functioning, but as of her initial diagnosis, she was deemed middle-of-road?

Unfortunately, I don't get a chance to continue, because Mrs. Julia slowly launches into a diatribe of how awful she thinks Violet's aide at school is. It turns out that she had helped in the classroom a few days, and observed Violet and her aide together; the aide that's been with Violet since she first began ABA, nearly two years ago.

I'm stunned silent. This is the second time I've talked with this woman and she's criticizing my choices as a parent? Insulting the services I worked my tail off to obtain for my daughter? The aide who has helped Violet begin to move mountains?

My planned dialogue of playdate-setup disappears and I listen and nod. Once again, I fail at being warrior-mom, because I don't defend my daughter's aide; in the moment, I even doubt myself and wonder for a few moments what I missed in the aide's behavior.
Mostly, I know I don't want to deal with this playdate.

That's it for now. That was right before the holiday break, and I'm not sure what will happen the next time I see Mrs. Julia. I want this for my girl- want a friend for her who is seeking her out- just her. I will most likely deal with my discomfort and try to find my voice with this overbearing, opinionated mother. Everything is a challenge; even the great things.

Here's some love, until I get to the holiday posts:

a huge step. handing Santa a letter (and then dashing!)!!

letter and cookies for Santa, carrots for Rudolph....

I've no idea what prompted the twins to go for the cowboy look on Christmas Eve, but I'm loving it.

loving, loving.



Tuesday, December 20, 2011

two years

It's been two years since Violet was diagnosed with autism.
Two years= half her life.

I went back and read this post today.

I realized that now, not only does she say, "Good night, mommy. I love you!", she'll often call out, afterwards and through the monitor, "Please stop blowing your nose! It's too loud!!"

She has friends.

She loves eating, reading, her cousins, animals (now leaning towards cows more than horses- go Temple Grandin!).

She uses the potty- all the time, except when she sleeps.

She dresses herself, brushes her own teeth, loves wearing her hair "long", like Rapunzel.

She can write her name, cut out shapes, and identify some words.

She swings on the playground and can nearly pump her feet!

She's funny. When I was telling her a story about a time when she was a tiny baby in my belly, she replied, "Mommy, you ATE me?"

My girl has done more for herself in two years than many, many children. And more for us than I could've ever, ever imagined.

Sunday, December 11, 2011

blessings, circa 2011


moments of love, gentleness and sweetness.
generosity. Saydah doggy allows ANY of Violet's 'other' animals to dine with her.

impromptu piano concerts (played to a full house!)
leaves. and cousins.

a beautiful late fall day where daddy and Ollie can go play baseball


lizards in the backyard!


"maybe he like to sit in my hair!"

buddies so special that they let you snuggle in their new big-girl bed.


a random hug after frolicking all over with bambi and thumper, who needed a rest.



spiderman love (and again, cousins)

a spontaneous bedtime story on the stairs


my buggy, getting to share a meal with her Great-Grandpa!

Ollie and Great-Grandpa
 
the tandem bike at school! MADE for them!