After the Airport: Reflections, and the Boats of Acceptance

A year ago I wrote Amsterdam International, about 6 months after I had left the airport myself. I was writing with enough emotional distance from my darkest point (a period of daily-tears-during-naptime, and racing-mind-while-lying-in-bed-at-night) to speak somewhat clearly about that rough transitional time, but while the memories were still fresh (and jagged) enough to hopefully do them some justice. I was attempting to say “This is the worst thing that I’ve ever gone through” and “If you hate life right now, don’t worry, you’re not alone” and “Someday, you will suddenly realize that you haven’t cried for a few days, and you will see that you’ve begun to (ever so slowly) crawl your way out”.   

I hoped that it would spread, and reach others who were going through their own dark times. And then I watched, amazed, as it did. A year ago I was awestruck as people (besides my mom) visited the blog, and in a matter of 3 days my daily page loads jumped from 67 to 421 to 892. I felt like I had contributed something, and at a time when I was feeling like I had lost some of my own identity (having left my career to manage therapies and appointments), that gave as much to me as any of my words gave to anyone else.

At the time, I was already grateful to be out of the airport, and I’ve spent a lot of the past year trying to spend more time enjoying the present, and less time thinking. (As it turns out, life is sometimes more fun with less thinking.) There didn’t seem to be much point to trying to envision what our future would be like in Holland, or worrying myself with particulars. I had already accepted that life would be different than the one that I had previously imagined, and I decided that while we would clearly have more struggles, we would also have more celebrations . . .and over the past year, we’ve had some great celebrations. First steps, first words, first bizarre adoration (hello, vulture), first glimpses into how smart and funny our girl is . . . we celebrate a new food with the gleeful smiles that some people reserve for opening presents on Christmas morning.

And I’ve enjoyed this about Holland-the joyful appreciation of minor things. I’ve come to welcome the slow pace of changes . . . by the time we got to walking, there wasn’t a little mom voice in my head lamenting, “Oh . . . my baby is growing up too fast! Slow down!” . . . there was just “Go! You can do it! This is amazing!” Progress has been made, and savored. In the airport, we were in a rush---a rush to fix things, a rush to change things, a rush to somehow alter the course of our unplanned reality-----but outside the airport, in acceptance, there is a peaceful happiness. In acceptance, things are . . . well, things are pretty good.

But I didn’t realize that this past year would teach me an unexpected thing about acceptance. There seem to be stages of acceptance, both as clear and as winding as the stages of grief had been.

Stay with me as I leave behind the airport analogy and switch to a harbor town. (I know, I know---Another analogy?! (eye roll) but it’s the best way I can think of to explain this.) 

The Boats of Acceptance

In this harbor town, the families with “typical” kids live on the land, and the families with “special/different/whatever term you’re cool with” kids live on the water. The families who are new to all-things-special-needs, who struggle to see which world they fit into, who still spend a lot of time in depressionangerdenialbargainingwailingpain . . . they sit on the beach. Not quite on land, but not ready to brave the water. And when they’re ready, they get to acceptance. And then they get their boat, to join those already in the water.

As best as I can figure, acceptance starts as a canoe. It’s tipsy, easy to capsize---but you’re so happy to be free from the limbo of the beach and enjoying the water that you don’t care. You paddle around thinking “This is working! I’m on a boat! I’m happy! This water isn’t so bad! “ But every so often you hear people playing on the shore and turn too quickly to see them----or you gaze too long at some kids playing in a soccer game close to the shore and you forget to row----and your boat wobbles and shakes and takes in a bit of water and you think that maybe you need to take a rest on the beach again. Just for a little while. 


It’s hard to learn to live on a boat.

It takes some time, but you become a champion rower. You can navigate turns, go superfast or smooth and slow, and the shore hardly distracts you anymore. You think to yourself “There are great things out here on the water. Those land people miss magical moments at sea.” You’re ready to drop your anchor and claim the water as your home.

So, you get a houseboat.

The houseboat of acceptance is strong and sturdy, built to last through the stinging winds and soaking hurricanes that you’re smart enough to expect in the years to come. And the best things about having a houseboat, docked securely at the pier, are the neighbors. You visit their boats and they visit yours, and you talk about the best places to buy rope and other boating things. So many people you might not have met on land, happy to help with ship repairs and barnacle scrubbings. You all have friends on land, but something is different among the camaraderie of people who live on the water---there’s a lot about boat living that the land folks just can’t fully understand. Life on the houseboat is good, you watch the tides come in and out and feel secure and proud . . . until you have to venture to land.

Going to land . . . well, it sometimes sucks.


You’re invited to a birthday party, or decide to take your kid to go visit the new museum, or whatever. You have high hopes. You’re ready to visit with old friends, to catch up. It only takes a few minutes to start noticing all the stuff that’s happened on land since you’ve been gone (they have flat screen tvs now? computers are wireless? what the hell is Twitter?) and suddenly all of the progress that you’ve made on the boat, the stories you were so ready to tell---they all seem very small. So small that you fearfully suspect the land people might put on too-big-smiles and too-cheerful-voices when they say “A new generator? That must be so fantastic!”

You may not be ready to be so close to land just yet.


But you want to shift from land to water, gliding from one to the other, at home on both, like the tides. The houseboat of acceptance, well, it may be home (temporarily? for a few years? forever?) but you watch the waves crash on the shore, stirring up the sand, and it makes you think. The water kicks up the sand and plays with the shells, lingers a bit, and then purposefully moves back out again. Maybe you could, too. Maybe you could join the land folks, move among them, and then return to the water . . . without the weight of misunderstanding/pity/envy/grief?

This is where a year has brought me. The houseboat is easy, the land is still sometimes hard (although there are easier days and harder ones) . . . and I’m ready to start rolling onto land with the waves (some days). I’m not sure how long it will take me to teach my body to switch from sea legs to land legs, and my visits might be short at first, but I’m going to go slowly. I’ve got a lifetime ahead of me to learn. As it turns out, the final, hardest to obtain, boat of acceptance is starting to reveal itself to me, and I don’t think it’s a boat at all.

I think it’s a surfboard.

   

   

Summertime and the livin' is (finally) easy*

July's appointments are done (earlier than expected, thanks to a cancellation that allowed us to get in this week instead of next).  We have a few weeks before we're scheduled to hit another waiting room, and it feels pretty good.

I have some work I want to do on the blog, but it's going to have to happen slowly, because summer brings better options than computer time . . . like sprinklers, and puddles.

She loves the drain, and trying to get little leaves and sticks to go through the holes.  I may be responsible for that.  Hee hee.

If you don't "like" us on Facebook then you stink missed out on two things today:

1.  First, Amsterdam International hit a milestone---over 1,000 shares on Facebook.  Wow.  (1,001 as of this morning.)

2.  I received a list of iPad (or iPhone) apps for children with special needs.  I didn't make the list (it comes care of Mark Surabian of Cognitech Cafe & the JCC), but I have permission to share it.  It's a 14 pg pdf file---if you'd like it, please shoot me an email (uncommonfeedback@gmail.com) and I'll send it your way. 

Button up!

That's not some kind of cute "it's really cold out because of the ice storm" title . . . I'm just saying that I literally now have a button up.  On the blog.  Right over there ---->  (the upper right hand corner of the side bar).

So, if you've spent any time in Amsterdam International, grab the button and display it proudly.  Like a badge of honor, a war medal, a bumper sticker :) 


If you add the Amsterdam button to your blog and would like to share your blog with others who pass through here, feel free to post a link in the comments section of this post!

Amsterdam International (update)

Amsterdam International has now been shared by 735 people/organizations on Facebook. 

Wow.

Thanks for sharing it, folks.

The published version is now framed and hanging in our apartment :)  I went to pick it up from the framer's yesterday:

 

(It's blurry, but you can get an idea of the size)

And after we picked up the frame, we swung by Stew's, where I smiled when I noticed that they had a special this week on tulips . . . directly from Holland.  It seemed only right to have some on the table when we hung the article on the wall :)

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:

Published!

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

A few more pictures are on the Facebook page :)

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 :)

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):

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

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!)

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