Tuesday, November 30, 2010

Here we come, walking down the street*

Maya's figured out that Parker gets walked on a leash, and now she wants to be the one holding it.  So I devised a 2 leash system that lets her "walk" him from the stroller, but lets me be in charge (just a little sprinkle of uncommon sense) . . . poor Parker is slightly confused about where to walk, but he's figuring it out. 

Here's what it looks like:

I feel a little bit like I'm operating a sled dog team with the stroller in one hand and the leash sticking wayyyyy out in front of me with Parker walking near the front of the stroller . . . I can't imagine what people are thinking as we walk towards them on the sidewalk.  But if Maya can't see where Parker is, she keeps twisting around in the stroller . . . and I'm trying to introduce the phrase "With Maya" to tell Parker when to heel to her.

*If you watch the video closely, you'll also get a glimpse of my fun new puffy magenta coat, and one of the new Starbucks cups in action.)

**Tomorrow December arrives, the most fun month of all.  Stay tuned for a walk down Holiday Card memory lane, starting with Maya's first holiday card (2008).
***If you see an empty space with a play button, just click it and the video will appear.

****If you took the time to read all of these stars, you get 7 points. 

Monday, November 29, 2010

Sunday, November 28, 2010

Under Pressure*

Why are we having evaluations this week?  What the heck is CPSE?  Here's my understanding of the situation, in a nutshell:

In the state of NY, therapies for children are provided through EI (Early Intervention) from birth until their third birthday. We’re starting to prepare for Maya’s transition out of EI and into CPSE(Committee on Preschool Special Education) which is run by the DOE (Department of Education, aka Board of Ed.). In general, the DOE is known for being extremely stingy with services, and very difficult to work with (placing children in “special needs” schools that are across the city from where they live, drastically cutting therapies, not providing one-on-one aides without a huge fight, etc.). 

By the way, this all ties in really well to the learned helplessness model again---it's us parents vs. the DOE, very David vs. Goliath-esque-----and they know all of the rules and hold all of the power, while we're scrounging around trying to gather as much infomation as possible to fight back with.

So this week we have a group of evaluators coming to, well, evaluate Maya. This morning we had the PT evaluation---later this week we’ll have OT, Speech/Feeding, and Psychological evaluations. Each evaluator will ask me some questions, watch Maya, interact with her, and administer some type of standardized assessment. The scores of each assessment will say how delayed she is in each area of development, and those scores will be used at the big meeting with the DOE in which we try to find an appropriate preschool setting (and whether she’ll be at a therapeutic—aka “special needs”—preschool, or whether she would be in a mainstream preschool and get therapies at home).

Also, I’m calling preschools, setting up tours, trying to find schools in the area. Trying to figure out what would be best for Maya, when really I have no idea. How can anyone know this stuff? I’ve gotten the name of a place to call this week that is supposed to help parents navigate all of this a little bit easier . . . I’ll be interested to see if I can find some guidance.

This stuff is all so stressful. I feel like a few months from now, my hair will fall out again.

I'm not joking.

I have felt my base stress/anxiety level increase, and I can’t really figure out how to best combat that. If you saw my last post, you saw what our schedule looks like . . . granted, this week is busier than usual, but even on a “normal” week, all of those therapies are there. We’re busy. There’s not a lot of time for relaxation or unwinding.  There's a lot of worrying.  A lot of "what if there's something I'm missing" and "what if there's some school that is only doing tours right now but I don't find out about it for a few months".


December is my favorite month, and I don't want it to get lost in this.  I've been addressing our holiday cards :)  I'm going to start decorating this week, and wrap presents.  We made reservations to go out to dinner for my birthday.  I'm going to make shopping lists.  I'm trying to figure out how to Maya & Parker proof our future Christmas tree, since they are getting more and more mischievous.  Like this:

That's Parker in the bottom corner, saying good morning to Maya.  And that's Maya, who somehow was trying to undress herself in the crib, apparently.

I'm going to try not to let this giant dark evaluation/CPSE/DOE/preschool placement cloud overwhelm my favortie month.  But I hate the fact that it feels like it will take effort.

Friday, November 26, 2010

Time slips away, and leaves you with nothing, mister . . . *

I haven't written since Monday?  Really?  Well, that's what happens.  Dave gets a week off from work, projects take over, time slips away, and the blog gets bumped down on the list of priorities.

We've been having a great week :)

We had some therapies on Monday and Tuesday, but canceled them all for Weds-Thurs-Fri.  3 days of blissful unscheduledness.  I'm sure that Maya misses her buddies, but it's nice to have the time off.    We've hung out with family (both sides), Maya's gotten to play with both sets of grandparents, 3/4 of her aunts & uncles, and 5 out of 7 cousins.  We've played, ran errands, and created another fantastic holiday card---coming soon to mailboxes nationwide :)

Oh, and we picked up these:

AHHHHHH!  (that's the angels singing) 

If your a real life friend of mine, or a regular reader, you might know that I have a thing with iced coffee.  I have 2 per day (ok, occasionally 3).  It has to be iced, has to be strong, has to be in a large (venti, whatver) cup.   A few years back Starbucks made these reusable iced coffee cups, which flew off the Starbucks shelves----and unfortunately, flew off of my desk at school, cracking mine straight down the side.  (Dave ordered a replacement for me from Thailand.  Seriously.)  Since then, we try to have a few back-ups on hand.  They only come out twice a year (holidays and summer) and don't last long.  So we grabbed 2 new ones this week.

And then, my fabulous sister-in-law brought me a blue one!  Blue! Someday I'll have all the colors of the rainbow.

And we even got this teeny tiny Christmas tree ornament cup :)  It's too cute (and perfect)!

(If you like iced coffee, a cup like this is really worth getting---it's double walled, so no water beads up on the outside of it.  More importantly, it's reusable (good for the planet).  AND, I just make a pot of coffee and then keep it in the fridge (in a Tupperware style pitcher) so it's cheap and always on hand.)

On the other end of the relaxed spectrum, this week we will be SERIOUSLY OVERBOOKED.  (That's in all caps because it's a scary, intimidating week.)  Maya will have her full schedule of therapies, plus a pediatrician appointment (2.5 year check-up) plus 3 evaluations for CPSE.   I'll explain what that means some time this week, but for now just know that it's stressing me out.

So we will be completely booked, from breakfast until dinner, nearly every day this week. 

Monday: (breakfast/walk Parker) Therapy A: 8:30-9:30,  (walk or dog park, lunch) Therapy B:11:30-12:10, (nap) Therapy C: 3:15-4, (snack) Therapy D: 4:30-5:15 (dinner, play, bed)

Tuesday: (breakfast, dog park) Therapy A in Manhattan with travel time 9:45-12, (nap), Therapy B: 3:15-4, (snack, walk in lobby) Therapy C: 4:45-5:30  (dinner, play, bed)

Wednesday: (breakfast, dog park) Therapy A in Manhattan with travel time 9:45-12, (nap), Therapy B: 3:15-4, (snack) Psychological Evaluation 4:30-?  (eat, play, bed)

Thursday: (breakfast, walk Parker) Music class: 9:30-10:15 (walk home, snack, play) Therapy A: 11:30-12:15, Pediatrician 12:30, (nap, walk Parker) Speech/feeding evaluation 4-? (eat, play, bed)

Friday: (breakfast, walk Parker) Therapy A: 8:30-9:30, Psychological evaluation 10:30-? (lunch, nap) Freedom!

I'm sure that I'm not alone on this front---sometimes it's really hard to explain to people how we "don't have any free time" even though Maya's little and I'm a stay at home mom.  Our free time really exists in 30-60 min blocks, which isn't quite long enough for a play date or lunch or whatever.  It can be really isolating.

So those are all of my random, strung together thoughts on the past week.  Oh, and I should include this, which was our Facebook status on Thanksgiving Eve, in case you didn't see it:

A year ago today we were having Maya's brain MRI done. This year we had breakfast and dinner with family, ran some errands, and enjoyed a therapy free day. Sometimes a year makes a big difference :) Happy thanksgiving, everyone.

Hope you all had great Thanksgivings!

Monday, November 22, 2010

Maya had a little lamb, little lamb, little lamb . . . *

I was walking Maya (in the jogging stroller) and Parker down "Main St." the other day.  As a mom with a young (3 years old, maybe?) son walked by, I overheard this conversation:

Mom: Did you see that big dog?
Son: No, mom, that wasn't a dog.  It was a sheep!
Mom: Ah, I see.

I sympathize with that mom.  It's tough to explain that Parker isn't a sheep, he does look sheep-ish.

Sometimes Maya forgets he's a dog and thinks he's a pillow:

I'll give you a big kiss, my Parker

In other news, Maya's most recent genetic test came back today----negative.  It was a FISH test to look for mosaic down syndrome (again---but this one looked at over 400 cells in case she had a very low percentage of mosaicism).  Not one of the cells had an extra chromosome, making it very unlikely that the diagnosis would fit.  Back to square one.

Oh, and in other other news, our holiday card is almost done.  :)

Sunday, November 21, 2010

Dave's on vacation (one full week!).  We had a fantastic time celebrating with our KIPP family on Friday.  We've enjoyed the weekend.  Things are good :)

I added a few new pics of Maya & Parker at the dog run to the Facebook page, go check them out. (You don't have to be a Facebook person, the page is set to public.)


Thursday, November 18, 2010

Dance magic, dance*

I blew my hair out this afternoon. 

If you're thinking to yourself, "Hey, that looks kind of familiar" . . .

. . . then perhaps you were a  Labyrinth fan.

Seriously, it's come a long way.  I really can't complain.  But I can certainly make fun of it. 

Tomorrow is Dave's last day of work (before a WEEK off!) and the KIPP Staff Thanksgiving dinner :)  Let the holiday season begin!

Wednesday, November 17, 2010


(if you don't see the video, just click play and it will pop up)

Tuesday, November 16, 2010

No dark sarcasm in the classroom*

(Well, maybe a bit of sarcasm.  But nothing really dark.)

Earlier this month I was invited to go and speak at a local college, which was really flattering.   I spoke to an Early Childhood class about our story---what it was like to realize we were in the special needs world, what day to day life is like, what it's like to become an advocate, and what my concerns/hopes are about entering preschool. 

Dave helped me prepare by surprising me with these (the night before):

*If you don't know what sitcom this is a shout-out to, shame on you the answer is at the bottom of the post*

The craziest part to me was seeing my blog up on the big screen in a classroom:

I sent this pic to Dave via text and he responded "Wow, you got 1 person to come?  Good job!".  (Eyeroll)  That's the professor . . . we were chatting and I said "Sorry---keep talking---I just have to take a picture of this because it's so cool!"

I had a great time talking and answering questions.   I talked about way back in the beginning, showed pictures, played video clips, and marveled in my head about how the blog is kind of our virtual baby book.  (That makes up for the fact that I never filled in the actual baby book, right?  Right?!)

Today,  Maya got a package in the mail from the class that I spoke with, along with a sweet little card thanking her for letting me come to visit. 

Is that what I think it is?!

I asked her, "Maya, where's the cow?", so she picked this book out of the bin that was next to her and held it up.  Clever little thing :)

He's so fun to roll around with.  Thanks for thinking of me, Early Childhood folks!

*The candy bars were an Office reference, from when Michael goes to speak at Ryan's business school.  Have a look for yourself:

Friday, November 12, 2010

Maya's an animal. And she plays with one too.

2 new videos from this week:

1.  Maya &Parker are BFFs.  He likes to try to engage her in playing, which is adorable.  When I unrolled the tunnel for Maya the other day, they immediately fell into playing this game:  Maya crawls through the tunnel, Parker walks along the outside.  When Maya passes by a window he would poke his nose with it, which makes her giggle wildly.  Then when she emerges, he gives her a thorough sniffing to make sure nothing strange happened in the tunnel:

2.  Maya makes animal sounds now!  She can do a cow (Oom.  It's "moo" backwards), a duck (which is clicking her tongue), and a dog (for some strange reason, a dog nods, apparently.  I don't know if maybe I nod my head when I say "woof" or what.  But if you ask her what a dog says, she nods).

Also, she'll "sing" for you, which is saying "la la la".

Stay tuned through the surprise ending.

As usual, if you don't see the videos just click play and they'll appear.

Monday, November 8, 2010

Let me see you 1, 2 step*

We have an announcement!

(Maya just needs to proofread the sign first)

That's right, people!  Maya took her first steps today!

Oh, it was so much fun!

We were on the floor.  I kept standing her up and letting go, then asked her to step towards me---and she did!  (And collapsed on to me)  Then we did it again, then again . . . and then I grabbed my cell phone to try to get it on tape for Dave :) 

Warning: To watch this video, you must hold your head (or computer) at a 90 degree angle.  Also, if your volume is up you'll hear me screeching a bit.  But it's totally worth it.

(As usual, if you only see empty space with a play button under it, click "play" and the video will come in)

Friday, November 5, 2010

I'm calling Hoarders

Maya's turning into a little squirrel.

Here's the story:

When we ride in the car, I often give her Cheerios in her cow cup to snack on.  I pass it back, with 15 or so Cheerios, she eats them, and then throws the cup on the floor and yells "eh! eh!" to get my attention when she's done and needs more.  (By the way, this started 2-3 weeks ago and words can not express how happy it makes me to be able to give her a snack that she can feed herself in the car!  Before this, we would have had to pull over somewhere so that I could feed her!  It only works with Cheerios, but we'll work our way onto other foods.)

So, I sit up front, chatting with her and glancing occasionally in the mirror.  She's never gagged on them, so I don't pay too much attention.   But the other day I heard a little "tick, tick" and caught a glimpse in the mirror of what looked like her dropping a Cheerio or two on the car door. 

I thought it must have been a mistake.

I was wrong.

It seems that she's creating an emergency stash of Cheerios in the car door compartment (ironically, she can't reach down to get them out once they've been dropped in, so I don't think she's thought this through all the way).

Upon further surveillance, she eats some Cheerios and then deposits a few in her little stash.  Here's the photographic evidence:

Maya in her carseat---notice the little hint of a Cheerios pile inside the car door? 

Here's a closer look 

Dude, that's a LOT of Cheerios!  (And a crumpled Dora sticker from her most recent ENT visit)

In other news, I did a little guest speaker stint at a local college today which was so fun---more to come on that soon.  Also, Dave brought brownies home to celebrate the fact that Amsterdam International has now been shared over 600 times on Facebook!  :)

Wednesday, November 3, 2010

Color me overwhelmed, and tickle me, Elmo. Wait--- I mean Tickle Me Elmo. I don't want Elmo to tickle me. Well, maybe just a little.

We're having a perfect storm of crazy events over here:

1. Tomorrow Maya has a playdate (read: audition) at a preschool that I really like.  If I'm understanding correctly, they'll take her into a classroom and let her interact and see if they think that they'll be able to meet her needs (it's a school for "regular" kids that strongly emphasizes inclusion).  I've zoomed past nervous and into intrigued---I can't really imagine what she'll be like there.  But I know it's creating a lot of subconsicous stress (and I've been gathering paperwork, evaluations, etc to bring with me).

2. Tomorrow afternoon I have to work a volunteer shift at our CSA.  No biggie, except it will be in the rain, and sandwiched between #1 (see above) and #3 (see below), not giving me much decompression time.

3.  Friday morning my dad is coming to babysit so that I can head to a local college, where I've been asked to come speak to an Elementary Ed class as a parent of a child with special needs.  The overwhelmed parent in me is saying "you're a guest speaker in an undergrad class, just go in with a cup of coffee, speak, highlight the blog, and relax".  The dormant teacher in me is saying "But what about a plan?  A handout?  A flow chart of doctors we've seen with an accompanying timeline?"   On a slower week, the teacher would win . . . but this week I think I'm going with the tired parent side.

4.  Next week we're finally going to an appointment to get evaluated for a handicap parking permit.  This process has been dragging on for months (once your application is processed you have to wait 6-8 months to get assigned a physical with a county doctor, who I think makes sure that you're not faking it).  Anyway, we'll head out to the county health building (which I'm sure is a lovely facility) and the appointment is during naptime (fantastic) and I've been trying to gather paperwork for that too. 

You know who doesn't care about any of this stuff?  Maya.  She just wants to rock out with Tickle Me Elmo, who showed up at my parents last weekend (thanks to my sister for cleaning out her toy collection!):

Elmo, what are you doin' at Grandma & Grandpa's?!

You're a laughin' Elmo?!?!?  This is fantastic!

And they all fall down . . .

Side note: Tickle Me Elmo was the "it" toy, like, 4 years ago I think.  And I never got the hype.  But once you hang out with him, you get it.  Dave and I were just nodding solemnly at each other, saying things like, "Wow.  Tickle Me Elmo is totally cool."  (nod, nod, Maya giggles and gasps for air)  "Yeah, I totally get why he was so popular" (nod, nod, Maya falls over laughing)

Monday, November 1, 2010

Happy Halloween . . . a post from Maya

For Halloween I got to be a Happy Cowgirl, and Parker got to be a Mostly Miserable (but Considerably Compliant) Horse.  With an amazing home-made saddle that my mom will be sure to post a close-up picture of soon.

Parker needed to graze in the field (or Grandma & Grandpa's front yard) like a real horse

Mommy, this is not a good idea.

Parker!  Get back here!  You can't run with me on your back!

Mommy, stop laughin'.  This is ridiculous.

Daddy, you can't get on Parker, too!  You're too heavy!  And my belly's hangin' out. So embarrassing. 

PARKER!  Stand up!  They will not give up until we get a stupid picture.

Again?  That's it.  I'm just going to lay down.

Stop laughin' at me, Mommy!

Then Dad wanted pictures of me standing alone.   . . .  Hello?  I don't really do standing alone, remember?

I'm doing it!  And I look like a rockstar!

My happy family!

I had the best Halloween ever!

Mom says that actually, the afternoon was less fun, with trick or treating weighed down by my walking stroller (figuratively, when I couldn't keep up, and literally, when she had to carry me and the stroller) . . . and then I may have had screaming meltdowns when we tried to go in and out of the stores.  I didn't want to leave any of the stores.  Anyway, I think that's all normal toddler stuff, so she should quit complaining.