Thursday, October 28, 2010

Published!



(and unaware that reflections make words appear all, you know, reflected.)

A few more pictures are on the Facebook page :)

Wednesday, October 27, 2010

Our day in cell phone video clips


(As always, if you see blank areas with play arrows under them, just click the play arrow and the video will pop in.)

We're experiencing a little developmental boom over here.  I've seen it before---a bunch of new skills suddenly show up.  Sometimes they stick (like signing) and sometimes they disappear again only to come back later (remember when she first pulled to stand for a few days, and then quit and didn't do it again until like 4 months later?).   But I'm soaking it all up while it lasts. 

Besides the walking-with-the-stroller development (which is huge, huge, huge and appears to be sticking around for real), she's starting to chatter away a lot more.  She spend half the day babbling to me, Parker, her toys . . . I can hear her now talking to something in her crib (no joke).  Here we are, talking in the laundry room:


0:02-0:05 She signs "more"  (her version of it, anyway.  Kids who sign modify their signs, the same way a toddler might say "lello" instead of "yellow".  They get more refined over time).  Then she just is chatting away :)


She's a champion block stacker:



At 0:34 when I say "knock it over" I initially didn't know why she turned away from the table.  Watching it again, I just realized that she turned to knock on the wooden hutch.  If you rewatch it, you can see her starting at me, possibly thinking "Knock?  I thought we were doing blocks.  But, ok, I'll knock . . ."  
She's such a clever little thing, I worry that others won't be able to see the wheels turning in her brain.  Then she goes rogue and tries to hurl all of the blocks on the floor behind the table.

She might not know shapes or colors, but she knows the important things, like farm animals:


And she loves books.  And cows.  And books that have cows in them.  And she does a big celebration when she finds the cow page in a book. (This video has a surprise ending).



Also, if you don't "like" us (that sounds weird) on Facebook, you might not be aware that "Amsterdam International" has now been shared by 493 people (or organizations) on Facebook.  If you have a FB page and you haven't shared the link yet, feel free :)

Monday, October 25, 2010

If you watched LOST, you'll get this. If not, you should really get the dvd box set. It was awesome.

The rabbits live on our terrace, in 2 separate cages (so as not to induce possible bunny boxing matches, which had occurred when we tried to cohabitate 2 prior bunnies).  Dave spent time cleaning and rearranging the terrace yesterday and decided that it's time for the 2 rabbits to live together in the ginormous hutch (thereby simplifying cage cleaning and giving us more space).  He came back into the apartment and filled me in.

Dave: "They're going to work out just fine"

Me: "Really?  How can you tell?"

Dave: "Well, I just told them.  Live together, or die alone."

(Although if you reflect on it, the statement doesn't totally make sense, it was enough to make me spit out my coffee.)

Live together!  We choose "live together"!


In other news, I had a panic attack today (tears and all) about my failure in trying to teach Maya shapes and colors.   Or much of anything lately.  I've been so focused on the PT work, and the feeding/speech work, that I feel like I haven't been doing many cognitive types of exercises or direct teaching.  Since her receptive learning-ness (that's a technical term) seems to be her biggest strength, I had a total meltdown over how we'll never get into preschool (and therefore elementary school, middle school, college, or be successful at life) because I haven't been mentally stimulating her enough.  Luckily one of the therapists could tell by my manic-sounding text message that I was out on a ledge, and she called to talk me down.

(This may or may not have been triggered by the fact that I'm going on a preschool tour this Friday. Yeah, that's probably what did it.)

Sunday, October 24, 2010

Walking & Talking

Walking:

Maya's got a mind of her own.  She knows what she wants, and now that she can steer her little stroller (which she's able to maneuver better than the more medical looking baby walker), she's able to go after it, too.
(I could upload 700 pictures like this.  I'm so excited that she suddenly is motivated to move vertically that I can't help but giggle and take a million pictures when we're out and she's (almost) walking!)

Sometimes she wants to wander around the basketball courts:

If I sit like that, I can scoot myself along on the stroller . . . I feel like a big kid .  I wanted to throw my arms up and go "Whhhheeeee!"  

But things got a little dicey  when she found a flight of stairs that she really wanted to go down.  Really, really wanted to go down.




We tried to explain that stroller + stairs = trouble, but she wasn't interested in listening.  Luckily, she's 2 and easily distractable, so the tears didn't last long at all :)


Talking:
We were on our way to Trader Joe's the other day and Maya was babbling up a storm---she loves to chatter in the car (maybe because we're not focusing on her and she's trying to join in with our conversations?).  Anyway, most people---even her speech therapists---don't get to hear Maya "talk" often . . . she really seems silent to most people.  She's always watching and listening, but she doesn't use her voice much . . . so we're happy to let you all hear her "talk".

I'm not sure what happened with the cell phone video recording thing, but somehow the sound is on a delay---you see her mouth move, but the sound doesn't come for a few seconds.  It makes more sense if you click the "play" button and then just listen, instead of watching.



Clearly, her expressive language (able to use her voice to express herself) isn't so great.  But her receptive language (her understanding of us) is actually very good.  You can see a little taste of that here, as Dave talks to her about her cow.


Speaking of cows, guess what we saw when we got to Trader Joe's:



Friday, October 22, 2010

A picture post

Because it's Friday, I'm feeling lazy, and I don't have much to say.  In no particular order, some recent photos:


Just going for a stroll with my Grandpa . . .  


I love givin' my cousin Emerson a big kiss! (This pic is like a week old, but I'm sneaking it in here because it's so cute.)


 Mommy, you look ridiculous.


Why are you people always messin' with me?  (New placement of TheraTog straps to try to get her to not lock her knees.)

Seriously, I am simply adorable.


Is this some sort of bizarre flashback?  No, we're just crazy.  Maya loves the taste of home made applesauce so much that we're buying up cheap bags of apples to make & freeze it.  Who wants to come over and peel apples?

Wednesday, October 20, 2010

What's in a name?

I used to think, not much.  But after a Special Needs School Fair last night, and a frustrating genetics appointment this morning, I'm finding that I'm starting to feel like a name is more important than I initially thought.  I'm speaking, of course, of a name for the source of Maya's delays.  A diagnosis.

Last night the school fair was bustling, overwhelming---a million booths, representing all of the schools that can accomodate students with different needs from preschools to high schools.   Dave entertained Maya (they came to make it more of a family trip and less of something-I-was-afraid-of) while I scoured the map of the event, cross referencing different needs each school could accomodate and the neighborhoods they were located in.  And then I went to booths and waited for my turn to talk to the representatives from the schools I was interested in.

And while I waited I heard snippets of conversations around me "My son has cerebral palsy and uses a wheelchair" "My daughter is deaf but uses signs", etc.  But when it was my turn, I didn't have the right words to use.  I hadn't thought far enough ahead, and when they asked about my child's special needs, all that I had were "can't's". 

"Oh, well, you know, we don't exactly know what she has . . . some genetic syndrome . . . we're not really sure . . . she can't talk, can't walk, can't stand alone, etc."

And everytime I said it, I felt worse and worse.  Who wants to be defined by their "can'ts"? 

I wouldn't want to walk into a group of new people, shake hands and say "Hi, I can't run, can't jog, can't do push ups, can't write without starting every other sentence with "and", and can't do mental math if the problem involves a lot of 7's.  Oh, and my name is Dana."

I used to think that a diagnosis wouldn't matter, because it wouldn't change who Maya is, and it wouldn't change our plan of action (re: therapies).  But now it would be kind of nice---nice to be able to say "She has Abc Syndrome" and then move on.  As we get ready to transition out of the Early Intervention program and into the CPSE (preschool) system, a diagnosis would make arguing for services easier, applying for programs easier, and it would help us maybe find other families who are in the same place that we are. 

At our genetics appointment this morning, another test came back negative.  The geneticist is leaning towards one diagnosis (which can't be tested for), I don't think it's a good fit and I'm leaning another way (also difficult to test for).  We may both be wrong, who knows.  More bloodwork was ordered, results to come back in a few months.

Until then, Maya remains the same animal-loving, silly girl.  She spotted this goat in a store window (yes, a real stuffed goat . . .only on Madison Avenue) and shrieked and pointed until I wheeled her over:

(You should've seen the tears as we wheeled away.  She's screaming hysterically, passersby are giving me looks, and I'm saying "It wasn't even a real goat!" over and over)

She really wants to be vertical all of a sudden, and is trying like crazy to get around (here, marching through the hospital hallway this morning with Dad)

And while her form is lacking, she's getting quick with the stroller----and SHE CAN STEER NOW!!!!!!!!!!  This is huge . . . it means that she can decide where she wants to go and actually make that happen :) 

Notice the proud-as-can-be smile at 0:08, and the steering work at 0:20
As always, if you see a blank square with a play button, click play and the video will appear . . .

Sunday, October 17, 2010

A bunch of little stuff

Highlights from the past few days:

-Miracles do happen . . . Maya's splints are finally here!  They're SureStep splints, and she seems to like them----after I put her socks on today she actually picked one up and tried to put it on her foot :)  Instead of the girly patterns, we went for barns and farm animals, because this girl loves her farm animals.  She took her "Little People" cow with her to bed tonight. 


-Speaking of farms, we took my mom to visit Maya's favorite farm/grocery store, Stew Leonard's.  I can't remember whether I've talked about Stew Leonard's here, but Maya loves it.  She made her first trip there when she was just 2 weeks old, since it was terribly hot and we were stir crazy in the apartment.  They have a little animal farm in the back, complete with Maya's fave, cows:


 (that's yogurt on her mouth)                                           Mom!  This cow is lickin' my sticker!

-We spent some time in NJ with my folks and my sister's family, and I showed off my hula-hooping prowess. 

(the look on Dave's face here is priceless)

-We went to a big dog/cat show, that we thought would make Maya laugh until she threw up again, but she really liked the T-shirts with the doggie pictures better than the dogs.  (So of course, we bought the stupid t-shirt.  I'm hoping I can make it into a pillow.)

-But I think Maya's favorite part of the weekend may have been just hanging out with her Dad at the playground:




Oh, and we had a big meeting-of-the-therapists, and our first ever playdate, and a bunch of other stuff I'm probably forgetting.  It's been a fun few days :)

Wednesday, October 13, 2010

Busy-ness, Crafty-ness, ____________ (I really wanted a 3rd -ness, but I've got nothing)

It's turning out to be another hectic week over here.  A few extra appointments/meetings, and the week is basically packed to overflowing.  Maya helped out by figuring out how to climb into her stroller:

 Yes, that's very helpful.

We're still in the beginning phases of teaching Maya how to use PECS (it's a picture card system that she can use to communicate).  I love the idea of it . . . although I can understand her signs, and Dave understands most of them, they still get garbled up.  So the cards would let her communicate with anyone!  I printed some up and laminated them, but they were too thin and difficult for her to pick up.   After 2 days of struggling I can up with this:


I glued them onto our old foam alphabet mats (you know, the kind everyone has) and then cut them with kitchen scissors (they were really easy to cut).  So now they're easy enough to pick up, and light, and easy to clean!  (When I mentioned this last night to some other moms of kids with special needs, one said "You're like the Martha Stewart of special needs!"  That's still making me laugh today :) )

Amsterdam International is continuing to make the rounds.  It's now up on 11 sites/blogs that I know of, with at least one more to come on Saturday morning.  I'm going to make a link list on the side at some point (maybe tonight?  don't hold your breath, but it's possible).  And 258 people have shared the link on Facebook----have you?  Why not just throw it up there for a little bit?  You never know who might be touched by it . . .

I realized that I posted a cute album of photos on the blog's Facebook page from my niece's birthday, but didn't add any here.  So I leave you with our most recent family pic (well, minus Parker):

Saturday, October 9, 2010

Freedom!

We got outside today!  More than once!  And got some great videos, too.

Maya is in motion with the pushable stroller! I especially enjoy the surprise meeting at the end of the video :)

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



She's moving, but needs help with the steering. So when she stops we point and say, "Maya, do you want to go over there, or that way?". She'll point, and we adjust the stroller so that she can walk in a straight line towards her choice. Then we follow.

Even if she chooses to go somewhere weird:


Also, Amsterdam International is getting around.  Here are some links:

http://downsyndromepregnancy.org/holland-and-its-offspring/
http://specialchildren.about.com/b/2010/10/09/leaf-animals-and-more-fun-things-to-do.htm
http://ianandchase.blogspot.com/2010/10/amsterdam-international.html

Friday, October 8, 2010

I can't come up with a title. But there are videos, so you should read it anyway.

Let's start with an Amsterdam International update.  Since Tuesday night, we've had 2,500 page loads.  Two thousand, five hundred.  That's a friggin' lot.  Also, 182 people have shared the link on Facebook.  Wow.  Keep spreading it around, folks.  I love the idea that it's reaching people who may really connect with it!

I've been spending all of my time working on emailing people and spreading it around, so Maya's been on her own.  Turns out, when left to fend for herself, she gets into trouble.

Example 1:  She chipped her tooth (The upper middle one on to your right.  The very bottom right corner of it is gone.)

How?  I have no idea.  That's the kind of mom that I am . . . my only child breaks a tooth and I don't even know when it happened.  Where's my Mother of the Year plaque?  (In all seriousness, we think it's because she keeps tapping things on her teeth---her OT had to confiscate a set of markers the other day.)

Example 2.  She taught herself how to climb on the coffee table because I wasn't there to help her reach her toys. 

You're probably thinking "Man, that must have been so cute.  I wish there was a video."  Well, wish no more:


(My dad was here for a Maya playdate, that's him cheering her on!)

(As always, if you just see blank white boxes with small "play" arrows under them where the videos should be, just click the arrow and the video will appear.  I'm not tech savvy enough to know why this happens or how to fix it.)

Ok, for real, the Amsterdam International stuff has been fun, but this has just been a crazy week for us.

We had a few appointments.  A few extra appointments basically wipe out all of our free time for the week.  We had 2-4 therapies each day this week . . . add in the appointments, travel time, 3 meals per day, 1 long nap, dog walks, and that's it.   I was basically a prisoner in my own home.

Luckily, Maya thinks therapies are more or less playdates, as evident by her so-happy-she's-nearly-falling-over (0:21) response when she hears that her 3rd therapist of the day is about to arrive:




Oh, and one of our appointments this week was for splint measurements!!!  Hooray!!!  (By the way, I got to pick out a pattern for the splints----rainbows?  Ladybugs?  Hearts?  Not for this girl . . . we went with red barns and farm animals---she's going to be psyched!)

Tuesday, October 5, 2010

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out. 

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :) 

Thanks for reading :)

Monday, October 4, 2010

So. Tired.

This week's schedule is (more) exhausting (than usual).  We have 3 doctor appointments for Maya, which mean therapies have to get shuffled, and we're missing the first music class of the session too.  Bummer. 

Tomorrow we have the developmental pediatrician, which is not one of my faves.  Besides the fact that it's a long appointment, involving a parent interview, the office is really small, really hot, and really crowded.  Maya gets cranky, tries to crawl, I try to grab her with one hand while simultaneously thinking about and answering a million questions, and I'm sweating. 

And then at the end, as a reward for my endurance, I get to hear how delayed Maya is in each aspect of development.

Yes!  (Fist pump)

Luckily, the doctor is really nice, which makes up for some of the misery.

Maya is psyched, too:


Oh, and guess what?!  She climbed onto the couch tonight.  All the way up!  By herself!  She's never come close to that before . . . Dave & I ran across the room cheering like crazy people :)