Monday, February 23, 2015

"Go on, take on this whole world, but to me you know you'll always be... my little girl..."

I've been so busy working 5 grueling days a week that I haven't had time to write anything here in ages... not true.  (Will we EVER get a 5 day week of school AGAIN???)

Truthfully, I haven't put a word on here in months because Sarai started kindergarten in the fall, and that was a ROUGH transition for me.  I'm not happy with her placement, I'm not happy with the school, I'm not happy with the district (my district!)'s "help" in finding an appropriate placement for her.  So I've tried to stick to the old adage, "If you don't have anything nice to say, keep your trap shut in public forums!" And now that some nice things have happened, I'm ready to talk again.

Hi there!

Some new people might be reading this, because I work in a new building this year, and you guys don't know me too well yet.  If you haven't ever been here before, let me introduce myself the way I sort of feel like I should introduce myself to anyone who doesn't know me...

Hello.  My name is Amanda, and I have a daughter with special needs.  She has cerebral palsy, vision impairment, global developmental delays and epilepsy.  Her name is Sarai and she is 5 years old.  She's wicked awesome, in the 100th percentile for beauty (I had her tested), and is a serious lover of dance music. 

Seriously, I feel like I need to say that to every new person I meet.  Our normal is very different from most normals...

"No, I haven't taken my daughter to the playground lately."

"I'm not exactly sure if she's excited about Santa Claus."

"We'll pass on apple picking.  It's not exactly an accessible activity for us."

"No, she can't eat that."

"Or that."

"That either."

"Yes, she started kindergarten this year!  Yes, I live in Goshen.  No, she doesn't go to Scotchtown."

And this is how we roll on Halloween, different can be pretty cool too.

So, now you know.  And it's all good.  I sometimes feel weird about sharing this at work.  I was once advised by an administrator to not talk about Sarai's challenges at school/work because news would spread to parents and they might complain and question if I could handle our home life AND a job.  (To that administrator's credit, someone actually did call and complain; before ever meeting me, before my ever meeting their child, while I was still out on maternity leave after Sarai was born.  And for the record, I think our personal life makes me a better teacher, in case you were wondering.)  Hey, we're here to share, so I'm sharing.

And while we're sharing.... You should know I'm super offended by the "R" word.  And sorry if that's annoying (not sorry at all), but if something hit really close to home for you and you had a weird thing about it, I'd honor it.  I used to say it too, it's ok.  But it's 2015, and we as a species have evolved beyond that.  It's time to quit, m'kay?  Can we still be friends?  Great.

Anyway, it's been an interesting year.  Despite my not being comfortable with her school, Sarai has an excellent teacher and team of therapists that work with her.  She is doing well there.  We had her annual review last week, and the words, "It sounds like we're talking about a different kid than we were 4 months ago!" were spoken, and not by me!  She's more comfortable socially, she participates, she's SPELLING CVC words, she likes to pretend she's the teacher at circle time, she's speaking in up to 5 words phrases (Ok, the only one I can think of is, "Can you hear me now??" But that counts!!).  My favorite new phrase is, "I love you, Mommy."  : )  Big gains! 

We took her to this awesome doctor last week at NY Presbyterian, in their CP clinic.  We've steered clear of doctors for a little while, and just being in the hospital with her felt so weird.  I was nervous that we'd get a good tongue lashing for not being on top of physiatrists, orthopedists, and physical therapy (of course we DO do alternative physical therapy 2-3x/week, Feldenkrais).  Instead of a tongue lashing he said, "Sometimes you need a break."  When I said, we don't do traditional physical therapy, we do Feldenkrais (there is a pic of Sarai in that link from the studio where she gets her Feldenkrais lessons), he said, "So far you haven't said anything that makes me think 'snake oil.'"  And when I told him about Sarai going to a typical preschool program, and that I know that might be a little unconventional, his response was, "What's wrong with that??  I think that's great."

Excuse me??  Did you just validate everything we've been doing??  And you're a DOCTOR??  You're more like a unicorn, and you're my hero. 

We talked about Sarai's vision and how I've always thought that was the most difficult thing to figure out.  He said if I thought that, then I'm already ahead of the game.  He finally, FINALLY, diagnosed her with cortical visual impairment (CVI), which I have been asking about since Sarai was 8 months old, seriously, and could never get a single doctor on board with, seriously

When will they learn??  I DO my homework!!

So basically, her eyes can see, but her brain needs time to process and understand.  It's why she doesn't make eye contact much.  And why she stares off and shakes her head side to side often.  (He said, "She's playing with the lights.")  It's why she's not a huge fan of strangers and new places.  New stuff can be scary, right?  Everything feels new to her, so we have to work on that, and we'll get there.  The good news is that CVI can be worked with and can improve, so now we just need a good plan in place for that, and right now we don't have one.  CVI experts are few and far between.  So now, we start looking for one. 

And then there's this crazy man....

Too many snow days.  This is what surrender looks like.
He's "spirited", and more than a little unruly, but he's such a sweet guy, and has the biggest heart.  His preschool teacher told me the other day that she asked him what he wanted to be when he grew up.  He said...

"Sarai's brother."

This hyperactive pooch has the patience of a saint.

Other than all that, you guys know we're expecting a new baby in May!  We did find out, and you may or may not know that we're having a...

Liberal Democrat!!  (Ok, that was for you Mom.) 

It's a GIRL!!!