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.  :)

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 . . .

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

Oh brother, times 10

In choosing to blog about life with a child with special needs, I think it would be irresponsible not to include some of the bad days . . . otherwise, readers who are in similar situations may feel like I'm idealizing life, or minimizing and skipping over the obnoxious, challenging parts.  Today was one of the lousier days.  If you're thinking "Lousy days be damned---make me smile!", then just skip ahead to the end :)

Today a lot of annoying things added up and became totally overwhelming.  Here were a few:

1. We have a huge stack of bills and insurance stuff to deal with. I have to call them, but I've been putting it off because although I hear of people "fighting with their insurance" to get things paid for, I have no idea what that actually means. I feel like I'm going to call and talk to some pencil pusher who says "we don't pay for that" and I'm going to say "you need to, the geneticist said she needed this test" and then he'll say "well, we don't" and then what do I do?  (I'm going to start making calls tomorrow, though.  I know I'll feel better once I address it.)

2. Parker's therapy dog class last night sucked, and I have a ton of work to do with him.

3. I can't get anywhere with the agencies that are supposed to sign off so that Maya can get splints for her legs. The process has been going on for literally months. I spent time basically bitching at several different people over the past 2 weeks, but all of them are powerless . . . the people who actually have the power to move it along either: are never in the office, don't answer their phones, or have permanently full voicemail boxes. I am waiting on a new phone number that I can start calling to bother people, and soon I'm going to request an address and just camp out there.  With Maya.  And Parker.  And we're going to sing "Wheels on the bus".  Over and over.  And then I'll change the lyrics to "The people in the office need to sign that form, sign that form, sign that form . . . the people in the office need to sign that form or we'll never, ever leave."

4. I worry that our lack of ability to get spints, and to get our speech agency changed, might indicate that this agency will mess up our transition to the preschool system, which starts in the winter/spring.

5. As I try to do all of this, I still am surrounded by way too much stuff at home. Why is there a pile of change, a tube of sunblock, and business cards on the counter?  Why can't we stay on top of putting things away, instead of emptying our pockets or stroller contents or whatever when we walk in the door?  (This is why the purging & reorganization project will continue, even if it's only at a snail's pace, until everything has a home that is easily accessible.)

I've just had it today.

And I tried sitting on the floor and crying, but it didn't help.  And Maya didn't understand what I was doing, and sat next to me with a furrowed brow.  Then I sniffled "Mommy's sad, Maya.  Can you give me a hug?"  And she climbed right into my lap and did just that.  Then she squeezed a handful of my face and I had to kick her off.
 
So, there's that.  It's not all sunshine and roses here . . . but we do have some good times :)  New pictures are up in the Facebook album "What clean(ing) looks like", so you can see progress in the media center bookshelves.  And here's a video of our dynamic duo . . . playing together in the hallway. 
 
Highlight: You may not have ever heard Maya talk before, because she gets pretty quiet when other folks are around.  But here, you can hear her version of "Pa-pa"----her nickname for Parker.  It's the only thing she'll reliably say almost every time we ask her to.  The silly part is that she says "Ma ma!" instead of "Pa-pa".   You'll hear it at 1:03.
 



Remember, if you just see a blank spot with a "play" arrow underneath, click the arrow and the video will start!

Blood draw? No big deal.

We had another genetic test done today, this time at the Children's Hospital at Montefiore.  It will take several weeks for it to be processed through CHOP (Children's Hospital of Philadelphia, kind of the mecca for genetics stuff)  and I'm not overly concerned with what the results are----however it comes back won't really change our daily lives anyway.

The best part of the visit was the blood draw (I know, what?  Drawing blood from a 2 year old was the best part?!).  .  Dave decided to video tape it, not knowing how it would go, and it turned out that she didn't cry.  At all.  No, really.  It was amazing. She whimpered, her face crumpled---I whispered to her and Dave distracted and that was it.  See for yourself (and enjoy the captions):

Disclaimer #1:  If you only see a white square below, with a play button, click on the play button and the video will appear.

Disclaimer #2: Dave thinks he sounds totally ridiculous---I think he sounds like a great dad who's trying to distract his 2 year old during a blood draw.  So don't mock the voice :)