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.

can I have a do-over please?

After Violet was diagnosed, Ben and I both agreed to be completely honest with our closest family members- about everything. It was an easy choice; Violet had only a handful of words at 2 1/2, communicating was really hard, and frankly, autism was a pretty good explanation for a lot.

We were even upfront with Oliver about it, right from the start. We explained as simply as possible that Violet's brain worked differently from his and we needed to be especially patient with her. We used the word 'autism' with him, and it was truly helpful in situations where he was frustrated with her not responding to him or tantruming out. Sometimes it even gave us a moment of comic relief .


Here's what genius mommy and daddy hadn't counted on:

Girlfriend becoming crazy verbal and communicative, and brother needed to fill her in on her diagnosis.
Repeatedly.

Or her beloved cousin announcing to everyone that he's "only playing with kids with autism right now", and grabbing Violet by the hand.

Ugh.

Right now, she doesn't get it. Ollie's enlightenment and Trevor's proclamations are either ignored or met blankly. But one day, she will ask, "what's autism?" or "I do?", and how on earth do I answer? And I pray that I get to be the one to answer instead of her brother or a peer.

I'm pretty sure that Ben and I made a colossal error in being so blunt with our then-two-year-old son. Here's hoping for a better path from here on out....

love love love

channeling Rapunzel. I've GOT to find this wig for my girl!

strong boy!!

Edward and Jacob, eat your hearts out...



favorites of February...

THIS! It's hilarious and on one of my new favorite autism-mama websites.

random huggies. always a favorite.



girlfriend wore a new striped shirt/cigarette pants ensemble the other day, and chose ballerina flats to complete the look. The outfit, along with her general impishness made me think of Audrey Hepburn all day.



cousins! circa 2011...



and 2008....love watching them grow!

random lunches out on daddy's day off....

cowboys

mud. yep, even mud is a favorite when my kids love it so much that I'm guaranteed a full 45 minute no-fighting stretch!

this root beer; bottles only please. I've had one every night for two weeks...simple pleasures.

Max and Ruby, the cartoon. We're having a real issue with Violet and television right now; as in, she doesn't want it on ever. Yeah, I know, but how's a mama to pick up or do laundry or make a meal without a safe 22-minute diversion? So Max and Ruby is the one thing I can count on right now. Although only certain episodes, particularly, "Max and Ruby's Tai Chi" (or as we call it, " Max and Ruby Chytee!"- imagine how fun THAT was to figure out!).

thinking about cutting bangs. I want this, but am pretty sure I'd end up with

this. Or worse,

one of these.

grandparents' day at school! how lucky are my twins that they have four 'real' grandparents and two 'adopted'? Plenty of loving to go around.

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.

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.

play

It's been a rough few days with my lovely V. I'm still working it all out in my head; the pain of watching her so frustrated or deeply sad or screaming until I think the little purple veins in her head will explode. Those are the worst moments; having no solution, no answers, no explanation.
Finally, on Friday during a particularly excruciating meltdown, with Violet writhing on the floor, not letting me near her, I looked at our Occupational Therapist, and said,

"what do I do?"
She answered quietly, "I don't know."

So, I willed the tears not to fall out of my eyes, and sat on the rug next to the therapist.

But, like I said, I'm still working all that out, so today I want to write about something bright.

Preschool has been relatively awesome this year. The kids love it. I love taking them. If I were a wealthier mama, they'd go every morning, because it's that great for them.

Violet's always been pretty social and loves other kids. Most of her play comes from her initiation, though, which in turn comes from her ABAs encouraging her to initiate (i.e: "Violet, why don't you ask Ella if she wants to play horses with you?"). I especially love watching them play on the playground after school with all of their classmates. Every Friday, they combine both of the four-year-old classes, and last Friday, I noticed Violet playing with I little boy I didn't remember from other weeks. Violet would meander over to the sandbox, and Ethan (as I found out later was his name) would call out, "Hey Violet! Let's go chase the superheroes!!" or "C'mon, Violet!", encouraging her back to the group. And she went.

I couldn't stop watching.

Because no one does that. While she's not exactly excluded from activities, there aren't a lot of times I see friends seeking her out. Her cousins, buddies, schoolmates like Violet, enjoy Violet, but my heart aches at the thought that I'm pretty sure she isn't any one's first choice for, say, pleasant conversation or a game of pretend. {post-editing: I came back to this paragraph four times, intending to delete it, because the words hurt me so much to type and read and even think. I wish I could think of a more potent or eloquent way to describe it, but it's just f$%*ing heartbreaking.}

And I can also understand. There's just so many times you can ask a potential friend to play princesses with you and have her insist on only being the horse before you seek out someone else willing to play.

I was immediately drawn to the situation with Ethan. Tears formed and I took in the moment. I'm not sure what the others mothers on the playground think- how can anyone who takes such simplicity for granted understand ?

I picked out Ethan's mom, meandered over and smiled.
I hadn't ever talked to her before, but I needed to tell her.

"Ethan is a really, really kind little boy." I said to her.
She smiled back and thanked me, genuinely.

I wanted to shake her and tell her depths of it all- how much it meant to me;  her boy, seeking out my girl. Including. Encouraging. How could she get it? She certainly didn't know Violet has autism, or social issues of any sort.

Ethan stopped at that moment, and looked at his mom, quizzically, "What, mommy?"
She'd been staring at him, feeling....proud? Special? I hope so- taking in the moment as well, on her own terms, smiling at her son.

Red-letter moments for two mommies that day, for different reasons. And the same.

Halloween 2011. More on this soon.

starstruck

I remember a time when I used to be thrilled by movie star sightings on the street when I lived in NYC - I have an autograph from Matt Damon somewhere and had a full conversation with Luciano Pavarotti. Having a super-talented husband also has had it's perks with famous people- some day I'll blog about Ben's make-out session with Hugh Jackman (purely professional, dear reader, but still...).

Now, however, I am humbled by and giddy about a different kind of coolness. Meet Jess...if you haven't already. She is the writer of Diary of a Mom, and of my favorite letter of all time. Imagine being stuck in a black hole, trying to figure out how to save your kid, and suddenly you realize that someone else was stuck in that black hole and she dug herself out. And survived. And even laughed about it once in a while. And, after a while, was even able to see that the black hole had some really special things in it, once you let your eyes adjust. Ok, rough analogy, but a black hole is not unlike how I felt on DD (diagnosis day).

Anyhow, I'm including her post today, because she said my name in it! *cue girlish squeals* And she put this very blog on her sidebar (eek!). Very-talented-husband Ben has a friend in the current Godspell cast on Broadway, and to Jess's daughter, Brooke, Godspell was, well, like Violet's Little Bear. So, I can imagine if Violet were a few years older and Little Bear opened on Broadway, with a real bear (and cat, and owl, etc.), and she got to sit in the front row, and then talk with them all afterwards. I love this post by Jess, I love the video at the end, I loved hearing about their experience and I love being able to come into contact with people who get it.

Thanks for the inspiration, to all super-mamas. I'll take that over Hugh Jackman any day...



And some totally unrelated photos:

Violet's utopia. All cows on one shelf....

DJ Oliver Rock (courtesy of Baby Nate's Yo Gabba Gabba party!)

relaxing sweets....

labels

I went to Barnes and Noble with Oliver the other day; or as it's called in our house, "The Thomas Store", thanks to the huge Thomas the Tank Engine play area they have there. Violet was at the farm with her daddy, so it was a special Mommy & Ollie outing. Unconsciously, I migrated over to the 'child development' section, looking at the autism books, and I came upon this:

Have you read it? My sister was telling me about it recently; she had bought it to read to her kids. I had heard of it, but never spotted it in a store before. I guess I had kind of hesitated, too, because the authors are Holly Robinson Peete and her daughter, Ryan, who I'm kind of the fence about. She's blessedly no Jenny McCarthy (i.e Playboy bunny, vaccine eliminator and autism "curer"), but she's still a tad too 'autism glam' for me. It's hard to read about superstars with a billion dollars who can get and try everything for their kid.

Anyhow, I sat on the floor and paged through the book that day. A lot of parts moved me.

The whole twin thing; how they grew together in their mommy's belly. How the typical twin had typical interests, but the autistic twin liked more unusual things. I liked that they used the word "autism"; I've never seen that in a children's book before. Tears fell when I read the part about how the mommy felt really sad after the brother was diagnosed. I like that Ryan talked about how sometimes she gets frustrated with her brother, but also wrote about the special things they did just the two of them.

I didn't buy it just then, but I felt like I would.

Then, last night, tossing and turning and stressing, I found myself thinking about "My Brother Charlie" and what it would be like to read it to the twins. Oliver would respond really well, I thought. Maybe even be able to relate a bit. I imagined Violet lingering nearby, not one to ask to be read to, but wanting to glance at a page here and there, and listen to mommy read.

It struck me then, what would happen when we got to the word, "autism". Oliver would say, "Just like Violet has!"

And Violet would hear. And she would say, "I NOT have autism!!".  Oliver would retort, "Yes you do, Violet! Mommy and Daddy say you have autism and that's why you have trouble sometimes!!"

oh.

How the HELL do I have a conversation like that? Its not that I'd ever lie to Violet or hide it from her, but how do you tell your daughter she has a developmental disorder? How do you tell her that her brain is different from all of her friends? How do you put a label on her at four years old? My stomach hurts at the thought of it.

No book for us. At least not now.

cowboy boots and silly tongues...

sweet girl is really into mommy's boots lately!

sharing Popsicles with Saydah!

at baby Penny's first birthday party. Yes, Violet is wearing a tutu.

fitting

I had a bit of a first last week, and have been looking forward to blogging about it, in hopes that maybe I can decide how I feel about it. Quite possibly the worst-written opening blog line ever, but there it is.

Violet has suddenly turned a bit girly-girl on us. She's still totally an animal-loving, rough and tumble, the-dirtier-the-better kid, but has started demanding preferring to wear dresses every day. And not just any dress, but particular dresses- the longer/frillier/silkier the better. It's completely adorable. Along with this has come a love of tutus and ballet. She started trying to do "plies" and the different ballet positions, and prances around with any sort of classical music (again, completely adorable). So, Ben and I decided to sign her up for a preschool ballet class. We found this LivingSocial (have you seen this website? It offers deals from everything from classes to dinners to vacations) for four beginner ballet classes at a place near us in the city. I bought it, thinking it was the perfect way for V to try it out.

I called to set up her first class. The woman on the phone was young and kind. Everything seemed set until I pulled out my go-to line towards the end of the call.

"I need to tell you, too, that Violet has some developmental delays. They are mostly social and sensory in nature, and she has a wonderful aide that will come into the class with her, with your approval. The aide will be completely in the background unless she's needed."

Yep, I never say the word 'autism'. At least not at first. Totally lame, I know, but I need people to hear my words and I know that the moment they hear the word 'autism', they won't hear anything else I say and will most likely picture a small, female Rain Man in their class.

The ballet woman hemmed and hawed, and I sat silent, letting her figure out what she would say to me. Finally she stammered out that she'd have to have the head of the school call me back.

I guess I knew then...kind of like the opposite of the old Groucho Marx saying about him not wanting to join a club that would have him as a member? I could never be a part of anything that would hesitate for a moment in including my daughter.

But I held out, contemplating. I felt like these classes would be so good for her, and she'd never know about the conversation I'd had with the teachers. The head of the school called back the next day and left me a fairly long message telling me how they wouldn't let any other adults in the room, but Violet was welcome to come in alone. I'm pretty sure the only thing I can imagine harder than having Violet try ballet with an aide and having a massive meltdown is Violet being alone in the room, having a massive meltdown and then me berating myself for not insisting on the aide.

I talked about it a lot with Ben. "That's discrimination!" he insisted. Is it? I think so. But, do you want to force a child (or any other 'different' person) into a typical situation where people aren't comfortable dealing with them? And then again, if you don't force it, who will ever teach others about inclusion?

To sum it up,
I never called the school back.

I called LivingSocial to explain to them what happened and ask for my money back.

I signed my ballerina up for classes at the YMCA. Out of our budget, but it needed to happen.

Two awesome things came out of it:

1. Violet is having a *wonderful* time....

eat your heart out, fancy ballet school.

2. someone heard me:

flower cookies! Ok, it's not inclusion, but I really didn't even think anyone would hear my voice mail.

REALLY starting to feel like I have a farm girl on my hands! Violet and Ruby

"come back here, chicken!"

I'm kind of realizing there is a new level of pain headed my way.

The diagnosis of Violet's autism was devastating.

The slow dawning of all of the things your girl May Not Be was/is heart-wrenching.

Beginning a new path of therapies, IEPs, picture boards, and a whole slew of new languages we must learn to speak is indescribably daunting.

All of those things made my heart hurt like no other pain.

 

Still, we get through it all. We accept it. I mean, was there another option?

Every so often a get a little glimpse of what's in store for us, though. I fear it will dwarf the initial hurts.

The other day I brought the kids over to play with their cousins for a bit- Ruby and Trevor are around the same age, and while they always love playing together, it had been an especially long time since they'd seen each other, so everyone was really excited. R & T were bouncing on their porch, waiting for us, and as we pulled in, all four started hollering to each other through the car windows. Super cute.

Violet got our of her seat first and ran up to her cousins, arms open and bellowing,

"HI RUBY! HI TREVOR!"

They both ran right past her.

They both ran straight to Oliver.

Oliver, of course, jumped out and greeted them. I looked at V's face.

{One of the biggest misconceptions about autism is the thinking that children with autism don't feel empathy or hurt. Like it might be a comfort, "well she doesn't KNOW no one's playing with her right? There is a great article on it here- the gist of it being that while autistic children may have a differing physical or emotional response to pain or sadness, it is, indeed, felt.}

She looked confused. Not hurt, exactly, but uncertain as to why everyone was hugging and jumping without her.

My heart cracked.

I called over to Ruby, "Hey Ruby, come say hi to Violet!" Of course, she did, and of course V gave her a big hug and said, "We both wearing dresses! You wear pink and I wear blue!". And of course, Ruby, age 3 doesn't know that this is a

miniature miracle

disguised as small talk. So, I say, too happy and too loud,

"YES, sweetie!! Your dress is blue and Ruby's is pink!!!!!"

Violet, my resilient, sweet girl, moves quickly past the slight and carries on with the playdate. She's not the easiest buddy though, I know. While she's good at pretend, she usually insists on being an animal, rather than "mommy" or "princess"; she won't play with any toys making noises of a certain decibel. She's not into candy and still wets her pants now and then.

I started to think about this Diary of a Mom post I'd read recently, which made my stomach ache. Reading it, I cried for Jess's beautiful little girl, but also for the small, painful glimpse into my family's future:

here

No pat ending to this post, I still feel really jumbled about the whole thing; my role as mommy, how to help Violet and what (if anything?) to hope for or expect from others. A work in progress?