Monday, June 25, 2012

How my heart grows - June 25, 2012

I have several posts written, queued up, and ready to go, but they don't feel right (and while some are serious, there's also a contest I need to prep up and get ready and some lighthearted things) so I let them out and then I save them as drafts.

Instead, I will tell you how my heart has grown over the past few weeks.

This is definitely the summer of changes for my girl. Of course, along with leaps and milestones and inchstones come tantrums and behaviors and acting out. There are setbacks. There are problems. It's true.


Potty training/learning/teaching/whatever is coming along very well. She has her off days, she has accidents, but she is doing so well that I think we really will be able to send her to pre-K without Pull Ups. Over the weekend, when we were at a friend's house, she didn't have any accidents, told me she needed to go every time, and just did wonderfully. Last week she even was willing to go in a public bathroom (she is usually pretty freaked out by those, though she insists on me taking her to every single bathroom in the known universe, often just so she can say "No" and we can walk back out).

We had an AAC evaluation that went so well that my whole "I don't want to get my hopes up" business went right out the window. I am VERY VERY excited about this new phase for her. She so desperately wants to communicate and talk. Tonight she talked to me steadily for about 2 solid minutes, and it sounded just like a foreign language that I'd simply never learned. It had cadence and inflection and she was very deliberate. I encouraged it, and I responded to it. And some of her words are becoming clearer (and she says "Cool!" and what I'm pretty sure - because she's said it too many times for the syllables to be random - is "I did!" when I ask her to do something/say something that she just did, whether I realized it or not). But with an AAC, she'll be able to really tell us things while we continue to work on her speech. The therapists were amazed at how quickly she figured out how to use the device, kept saying "she's so smart! she's picking it up so fast!" over and over. It made me so proud, and I choked up a bit when she started asking for her turn and their turn and more and pretty and bears and.... She's only tried out one device so far - hopefully we'll get to try another one this week or next - but I already kind of know which one I want for her, and her SLP is pushing for that one too. We'll see.

She has managed to get herself from a downward-facing dog position to standing and STAY STANDING a few times. She's gone from barely being able to even get in that position to bouncing on her hands (as her PT said she would) to getting up but then falling over immediately to STAYING PUT for a few seconds.

A plus B plus C equals amazing progress. She's always moving forward, always doing things. Sometimes, when we're alone, I forget that she has cerebral palsy for a while and she's just my girl, doing what she does. When we're with neurotypical kids, the sadness does creep in - watching her play with a four-year-old girl who runs and jumps and communicates with ease, that gets me down. But then I look at what she is doing and how quickly she is doing it and I catch myself from the fall and I celebrate instead.

She'll be five in about two weeks. Five years of this. I had no idea. But I think five is her year.

Wednesday, June 13, 2012

Thrifting with the family - June 13, 2012

I lied. I got to go thrifting again! All three of us went to visit my friend and since my daughter is rapidly growing out of her shirts, I convinced my husband that we should also stop off at my two favorite stores. And yet...I only bought things at one of the stores, because, let's face it, my closets and her drawers are all bursting at the seams. I'll need more clothes when the weather changes, but for now I'm pretty set with summery stuff.

Still, somehow I managed to get a few things for me and a bunch of things for her. I spent $16 total for everything you'll see below. (My husband bought some shirts at the second store, but this isn't his blog... heh.) Neither she nor I had time to try anything on, was all so cheap, I took chances.

Shorts for her, including a pair that reminded me of one she already has. (Exciting, I know.)

This shirt changes color in the sun. I was hoping to have a before-and-after picture but I didn't have a chance. WATCH THIS SPACE.

Gymboree shorts at the top left. The middle skirt has shorts underneath.

Oh hay Hanna. 

Husband chose this one, which surprised me. It's a know. And it's missing a button on the back (easily fixed). I bet she'll be crazy adorable in it, if she wears it.

And another dress! I picked this one - it's too big but it was so cute. Hopefully she'll wear it eventually.

The T-shirts she needed. Ridiculously consistent color scheme not planned. 

Polka dots!

Time for mama's clothes! I hope this fits. It's also dry-clean only, which is a pain, but so pretty! Ann Taylor Loft!

Running shirt in mint condition.

Oh do I have a weakness for shirts like this. And I am moody...

Cat not thrifted yesterday. He insisted on not moving. The shirts are all plain anyway (I grab plain black shirts when I see them because I love them so - there are 2 black, a brown, and a grey-ish in this picture. And a cat.)

"Look at me! Don't look at the silly toad shirt! LOOK. AT. ME! I CUTE!"
The end!

Wednesday, June 6, 2012

The alphabet soup life - June 6, 2012

Sometimes I really, truly forget that not everyone has to deal with what I have to deal with. That not everyone is running around coordinating therapies and specialists, prescriptions and insurance companies, appointments and more appointments. Really? This isn't normal? I've never known anything different in childrearing, and I totally lose myself in it all.

Today, for example. We had an appointment to pick up her SMOs (after which we got extra super awesome cupcakes from a brand-new local bakery, I should add). Meanwhile I'd spent all day talking to the therapy practice that we were hoping would do her AAC evaluation - I'd called a month ago to be put on the waiting list but figured if I hadn't heard back in a month I'd squeak my wheel in their direction. So I did and there were many back and forth calls figuring out details (calls that may not ever have happened if I hadn't made that "just checking" call yesterday, I suspect), an appointment was set - and their office is an hour away, so I had to make sure we could get back to our side of the world in time for the standing OT appointment my kid always has.

(As an aside, we are SO lucky that almost all of our appointments happen within a 5 mile radius - so far we only have had to travel a good bit for the pediatric dentist, because we love her, and we very rarely used to go to a Shriner's Hospital that was about 3 hours away, but we stopped when we got Medicaid and that made the traveling unnecessary.)

Anyway, yeah, sometimes it feels like my life - the life of a parent of a child with special needs - is all about this type of schedule. Not the schedule I envisioned, which would've been full of summer camps and museums and playdates. But I'm not complaining either - things are actually going very well, my daughter thrives in these therapies, and the progress she's making is astounding.

I just wonder what everyone else does with all that free time they so surely have. (I kid. I kid. All parents are busy, no matter what, I know.)

I am so used to this alphabet soup life that it doesn't make me blink at all anymore, I guess.