Saturday, August 24, 2013

Happy, happy birthday, Maybelle!

I have become the old person who reminisces about her daughter's birthday. The whole, "Five years ago right now, I was in the hospital, waiting to be induced!" This morning I shared this with Maybelle, and showed her lots of her baby pictures--a tradition on the morning of her birthday. She ran and got a baby doll so that we could compare that "tiny, tiny baby" with the "tiny, tiny baby" on the computer screen. She was willing to acknowledge that the baby on the screen was Maybelle, but she seemed far more interested in identifying the other folks, all the folks who love her and were holding her in gentle, affectionate ways.
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LH mercy, look at this person!  Because she has Down syndrome she spent an entire unnecessary week in the NICU (this, my interviews have shown me, is not at all uncommon).  Strapped up to machines and tubes--it was tricky even holding her, but we did.  And my mom drove me to the hospital every three hours that week so that I could rearrange the tubes and breastfeed her--with lactation consultants visiting and moving my boobs around in entirely casual and non-weird ways.  Go, lactation consultants!

Then she got to come home. And who was there the night she came to our house? Claire.  (I haven't used this picture before on the blog, so I figured it was time.)
Auntie Claire with Maybelle, 8/31/08

A healthy, happy baby.  It looks like she was wrapped in a dishtowel, which would have been the right size.

Today she's huge!  People keep commenting on how tall she is, and they're right--a lot of five-year-old clothes are too small for her.  Long legs.  She got those from me.

She's a person who now routinely goes through my closet and pulls out my t-shirts to wear, which is why, in the video below, she's wearing a shirt so big that it's falling off her shoulders.


Birthday from Maybelle on Vimeo.

We've had an excellent birthday.  A house full of friends this morning, five boxes of cinnamon rolls from Wildflour (that's right, five boxes), and kids running around, screaming, and hitting each other with balloons until they were all completely sweaty.  At one point Maybelle took all six of her dolls (Lela, girl, girl, girl, girl, and Dora) and got in bed.  She needed a little down time.

My baby is five!  Happy birthday, Maybelle!

Tuesday, August 20, 2013

Alison and her big hair on HuffPost Live

I was just interviewed on HuffPost Live as an expert on prenatal testing and Down syndrome, and as a parent of a child with Down syndrome.  Fabulous experts Brian Skotko and Stephanie Meredith were also being interviewed (and is it fair for me to claim credit since I suggested that both of them be included?).

"Counseling for Prenatal Testing" = the link.

My only complaint was that at the end the only person called "Dr." was Brian.  Let's all remember that I, too, am a Dr!

On the advice of several colleagues, I wore my hair down.  My Nashville friend Jay just wrote on Facebook, "Awesome, just caught the end live. Way to go! And your hair was representing."

I'm going to assume that's a compliment.

Wednesday, August 14, 2013

Fully inclusive dance class

I'd like Maybelle to take a dance class this fall--not, I feel compelled to add, because of gender stereotyping, but because she loves to dance.  Loves it.  I've contacted a few dance studios in Charleston, and here's the message I've sent:

I'm really interested in the [whatever preschool eclectic dance] class you're offering this fall.  My daughter is five, and she has Down syndrome. She loves dancing, and she's learning to be better and better at following instructions and watching and imitating her peers.  I wanted to confirm that this will be okay with this class.

Dancing with Uncle TreyI've gotten some responses that have suggested that, well, this might be okay, but we're just not sure.  You know, we've had some kids with intellectual disabilities in the class before, but they couldn't pay attention the right way, so we've asked them to leave and try again next year.  You know.  Intellectual disabilities.  So unpredictable.  Not like the normal kids.

These places have obviously been a resounding NO for me.  I've got no interest in subjecting Maybelle to the kind of scrutiny that immediately frames her as different and potentially problematic.  In a class for 3-5 year olds, exactly how much dedicated attention do they expect?

I emailed DanceFX, a studio just down the street from our house.  Here's the response I got to my message:
That's Awesome! We would love to have her come take class:) Please let us know if there is anything we can do to help her learn and grow with us.   Thank You!
Where do you think Maybelle will be attending dance classes this fall?  DanceFX, and I want to give them public acclaim for their appropriate, enthusiastic reaction to having Maybelle in their Pre-K Discover Movement class, which sounds totally fun.

DanceFX:  a great place for kids!  (And also a great place for more adult dance, if you're interested in that).

Monday, August 12, 2013

Clothes

You know what I'm tired of?

Clothes.

I don't mean that I want to walk around naked all the time--although being naked is certainly very comfortable.  I mean that every single morning, I have to look in my closet and decide what to wear.  "Oh, I can't wear those comfortable pants because they're dirty.  I don't want to wear that shirt because it requires me to wear a bra.  Blue jeans are too hot!"

I have only two kinds of clothing that I consistently approve of:  Jockey for Her underwear (thank you, Kelly Piepmeier, for keeping me well stocked) and really large t-shirts (thank you, early 1990s, for helping me to look sadly out of style).

How tacky is it to include a picture of your own underwear on your blog?  I'm not wearing the underwear, so I think it's acceptable.  Plus, the reason I have so much extremely comfortable underwear is because my father was doing the laundry one time when I was visiting my parents and he was appalled at--let's just say he was appalled at how old the underwear was, and leave it at that.  He sent my mom to the store, and apparently does so every couple of months.  If my father's familiar with my underwear when I'm not wearing it, I think you all can be, too.

It's Monday morning, folks.  I'm having to get dressed, and I thought you'd all want to share in the challenges that involves.  I'm currently wearing one of my "This is what a FEMINIST looks like" t-shirts, and I guess this is how a feminist complains about clothing.


Wednesday, August 7, 2013

Maybelle loves swimming

I mean, she loves it.  That's one of the reasons she's such a fan of Camp Baker:  they swim twice a day, every day.  They worked on actual swim skills this summer, and when I took her swimming this weekend, I got to experience those skills.

You can't really see it in this picture, but she was in the pool for an hour, and the entire time, she was kicking her feet and moving her arms aggressively.  And laughing.  She would climb up to the edge of the pool, and then as soon as she was holding adult hands she'd leap into the water.  I remember during previous summers at Camp Baker, the swim instructors had commented--as a concern--that Maybelle had no fear of the water at all.  While I think she still has no fear (she'd inhale a mouthful of water and cough, but then immediately she'd be smiling, wanting to swim some more), she's learned some safety skills, and that's a good thing.

By the end of our swim session, I was basically supporting her with only one hand under her abdomen.  She was doing everything else--keeping her head up, kicking, trying to get her arms to move functionally.  I was so impressed!

She enjoys swimming so much--enjoy is far too weak a word--that I suspect it feels really good to her.  She doesn't have a sensory processing disorder, but her occupational therapist has talked about some sensory processing issues.  For instance, one of the toys Maybelle really loves is a huge sheet of spandex in which I wrap her up, lift her into the air, and swing her around around.  It applies pressure evenly (and pretty strongly) all over her body.  Kids with various kinds of sensory processing challenges find those swings very soothing.  And water is similar:  it's a steady pressure all over the body.

The only way I got her out of the pool was to tell her she'd get to watch some TV.  And I actually think that wouldn't have worked except for the fact that she was completely exhausted.  As we walked away, she said, "Bye bye, swimming!"  I corrected her:  "See you later, swimming!"  We'll definitely be doing more of that.

Tuesday, August 6, 2013

Piggly Wiggly

Yeah, this isn't a typical post for "Every little thing."  I rarely (meaning, I think, never) endorse grocery stores, but I want to give a shout-out to the Piggly Wiggly that's just a few blocks from our house.  Maybelle's been going there since she was born.  Since before she was born, actually--I hauled my pregnant body around the Pig to get box after box of cold cereal.

Here's the thing about the Pig:  Maybelle and I regularly go there, and all the managers know her.  They know her name!  She and I were checking out yesterday, and the manager who was bagging our groceries said, "Hey, Maybelle, how are you?"  She said, "Store!"  She loves going to the store.

I had no idea what this guy's name was, but he knew Maybelle's name.  We often have that experience there.

And the other great thing about the store is that they'll buy pretty much any product I request.  During her second year of life, Maybelle adored Veggie Booty.  Loved it.  It's a bit of an obscure product--usually the kind of thing you find at an expensive health food store--but when I told the main manager at the Pig to stock it, he did it.  The same with Chobani, Maybelle's favorite yogurt of all time.

For her third and fourth birthday parties, the cakes came from there.  They give her balloons.  They don't mind that she often dashes around the store with an adult trying to catch her (she and I are working on that right now).

So:  I endorse this store!  I can't speak for any other Piggly Wigglys--anecdotal evidence suggests that many of them are a bit sketchy.  This one is outstanding, though, particularly if you live on the peninsula.

Friday, August 2, 2013

House for sale!

Check it out, y'all--575 Rutledge Ave, where Maybelle and I live, is for sale!
That is a good looking house, right?  A fantastic guy came and trimmed up the shrubbery, and another fantastic guy took pictures that highlighted all the gorgeous colors in and out.  I particularly like the picture of Maybelle's room, below:

This looks like a dream of a kid's room.  Please note that for this picture I lined up a bunch of her stuffed animals on her bed, and I assembled all the little people and animals neatly on the farm and in the castle, which are both basically invisible here.  What are visible are two pictures above the mantle that Adam and Nina made for Maybelle.  Also a teeny tiny bit of the dinosaur mountain Catherine gave her, the caterspeller that Phil and Lisa gave her, the funky stuffed "animals" that Uncle Trey gave her, the pillow that my mom knitted her.

Okay, that's enough of that.  The real point of this post is that the house is astonishingly clean (rare for me), and it's on the market.  So if any of you live in Charleston, you should consider buying this beautiful house--with excellent bones!  So much character!  Built in bookshelves!  A huge attic!  Wood and tile flooring!  Big, big shop in the back!

!!!!!!

Update:  A bunch of people have been asking where we're moving--are Maybelle and I leaving Charleston?  I thought I should assure you that we're not leaving Charleston, we're just leaving this house.  If all the timing works out perfectly, we'll be moving three blocks away, to the house Uncle Trey is currently living in (which Jess and Carmel own, two wonderful people who used to be kid playdate friends and now live in Austin).