Rock the vote

Uncommon Sense has been nominated for the "Best Special Needs Blog" award at Parents.com.  (See the pink box in the upper right hand corner?!)

I got the "You've been nominated!" email on Tuesday night, and we were in last place (78th).  Over the past 3 days, votes have been coming in, and we've climbed and climbed our way up to 5th place.  5th place!  Wow.

I can't help but smile at the irony (or maybe meant-to-be-ness) of the timing of this whole thing.  Less than 1 week before my nomination email arrived,  I was struggling to find a place for myself.  I spent a lot of time wandering my apartment in silence, and a good deal of it wondering, Should I use some of this time to try to write more?  I've been enjoying the past year of more serious blogging . . . maybe I should explore it further?  Or am I just deluding myself in thinking that this blog is anything more than a fancy way of talking to myself? 

And then I signed up for a writing class, and I'm trying to figure out how to blog better and write more, and then a lovely reader (thanks, Jo-Anne!) nominated us for a contest.   Things are happening.  There's forward motion here (or at least forward leanings) . . . and it really means a lot to me.   

So, if you could spare a minute, you should go vote.

BUT WAIT! 

Don't go yet!  I have to warn you . . .  when you click the button to vote, you will have to register with the site (free, of course, and you can uncheck the boxes so that you don't get emails from them) before you vote.

BUT WAIT!  (again)

Before you roll your eyes and sigh "Register?  (hmmph)  I don't have time for that.  I would have to, like, type in my whole name and email address?  Oh, brother.  Maybe some other time."  (Honestly, I feel you.  I hate registering to do stuff online.)  But, really, it's not so bad.  I promise.  And in case you need a little push in the voting direction . . . let me remind you of some of the highlights so far . . .

You may be a true friend of the blog if . . .

 . . . Maya helped you feel glamorous, because your license picture is defintiely better than hers.

 . . . you celebrated her first words with us, and loved listening to her actually speak!

 . . . you watched and clapped with us as she learned to step, then mini-walk, then stand up on her own, and then really walk.

 . . .you nodded along when I talked about the therapists, and the balance between therapies and life.

 . . . you wanted to give her a high five when she showed me that she had been secretly learning letters.

 . . . you've been to Amsterdam International, or if you read it and were able to better understand what the trip to Holland is like.

. . .  you watched Maya's first day of school video and felt proud right along with us.

. . . someone you love is undiagnosed, and you feel like now you have a friend (that's us!) who is going through the same struggle.

. . . you've ever been bored and gone back through the archives to unearth gems like this one. (seriously, check out the cuteness of baby Maya--I guarantee that you can't watch it without smiling)

If you laughed with us . . .

And shared in our frustration . . .

And worried with us . . .

(and even thought "What in the world is going on with this Kristi Yamaguchi stuff?!")


And maybe shed some tears along the way (happy ones, sad ones, reflective ones . . . as I've written I've shed them all, I think.)

If you check in here and think "Oh good!  A new post!" or "Get it together, Dana, it's been days since there's been an update!" . . .


If you love Maya, and root for her, and believe in her . . .


 . . . well, thank you. 


Thanks for joining in.  

I'm looking forward to more highlights and pictures, videos and stories, laughter and tears.  We'll do our best on this end to stay interesting and honest, to bring the good and the bad.  But one thing that would make the blog even more special for me is something that I can't do myself--I need your help.  I want that little badge that says "2011: Parents Best Special Needs Blog".  (It wouldn't actually magically make us "the best", I know, but it would be neat to be recognized.)  So take two minutes and vote.

 Please and thank you. 

(Voting closes Oct 15th.)

If you want a job partially done, I'm your girl

A realization hit me like a lightening bolt this morning, as I thought about my massive "To Do" list while I ate my breakfast:  I'm great at project preparation, or even project progression, but I suck at project completion.

I read this week's lecture for my writing class, took notes, looked at the homework assignment and thought about it (but didn't actually do the homework).

Then, I thought about my first big writing assignment (due in a week-ish), picked a topic, sketched a rough outline and took down some notes (but didn't actually start writing the paper yet). 

Then, I decided that it was time to make some communication boards for Maya.  I have BoardMaker, but had decided not to make boards until I saw the format that they were going to use at school (so that I could learn from them and stay somewhat consistent).  They sent home a sample board last week, so I thought I should make some. I was ready to go!  Except I had to find the cd first . . . sigh. 

I'll admit it---the misplaced cd was nearly enough to make me give up on this project. 

Why?  I don't know.  Sometimes I feel like there's always so-much-more-that-could-be-done . . . so much that it's easier to just say "Oh well, I can't do this all, so I may as well just take a break".  Like I spend so much mental strength thinking about the steps to do projects that I'm left without enough energy to actually get up and do them.  But today I was determined, and I set off searching for the dvd, while pondering my all-to-often readiness to (temporarily) abandon a project that a takes a turn for the difficult ("temporary" abandonment can last for hours, days, or weeks, by the way).

I started searching in the back of my desk and found this . . .

This is a small notebook that I bought when Maya started therapy.  The therapists would come and work with her, and I would sit on the floor and take furious notes so that I could replicate the exercises when they were gone.  The first 20 pages are full, and then empty.  Again, I'm a great project starter, but my follow through?  It's just 'eh'. 

The notebook itself is a perfect example of my project preparation---I got the ideal notebook to take notes in, but stopped after a few weeks.  I got the BoardMaker cd, but haven't made boards yet.  I set up my awesome computer writing station, but haven't done the real writing yet.

I got canvases and paint to make art for the kitchen, and . . . well, take a look:

A solid start (one completed painting), fizzling effort (a 3/4 complete painting), and a blank canvas.  Sigh.

After a brief pause to take the pictures you just saw and clear out a drawer in the coffee table, I found the cd!  Installed it on my computer, opened it up . . . and realized that I had no idea how the heck to use BoardMaker.  Oh brother.  On another day, I would have given up (again)---but today is a day of detemination!  I found some tutorials and watched them (for 57 minutes, I might add).  I learned the basics.

And, finally, after three different restarts, I made a board.

Maya's special instructor is coming by today, and I'm going to go over it with her (she's a BoardMaker pro) and see what I need to modify.  I'm going to send the board to school with her tomorrow to get feedback from the teachers.  I'm sure I'll have to redo it, but at least I did it.

I think sometimes it's the subconscious fear of not doing things perfectly that keeps me paralyzed from making progress.  It's hard to put the paint on the canvas (or the words on the paper, or the buttons on the communication boards) because, odds are, I'll look at it later and think "Argh.  I could have done that better".  But I'm starting to learn that sometimes any painting, flaws and all, is better than a blank canvas.

Computers & Camels

The title means that I'm going to tell you about 2 things: 1. Computers.  2.  Camels.  Separately, not together.  I'm doubtful that camels and computers are a good combo.  (Although, my college mascot was a camel, so I guess right now I actually am a camel with a computer . . . but I digress.)

First of all, this post is being brought to you from my fancy new home workstation.  I set up a desk space with a monitor, keyboard and mouse---allowing me to turn my laptop into a desktop.  Why?  2 reasons.  First of all, for Maya.  I want her to start touching a keyboard and mouse, but I certainly don't trust her with my (breakable) laptop.  The external keyboard is a much better idea, and the big monitor screen lets her easily see what's happening.  2.  With my sudden influx of free time, I feel like it's time to put my money where my mouth is and see if I can really become a better writer.  I've started taking a writing class, and I wanted a "work place", as opposed to on the couch/at the dining room table with the laptop. 

So, win-win.

Here's the set-up:

We got these great keyboard stickers to make the letters easier for Maya to see (she doesn't have any vision issues, but it just makes sense to me to make the keys big while I'm trying to introduce them to her).  They peel off easily, too . . .don't ask me how I know that.  It's not like I put 2 of them in the wrong places or anything.

Keyboard before the stickers:

Keyboard after the stickers:

I only put on some of the stickers---letters, numbers, arrows, and enter.  I saved the extra ones, but they didn't seem necessary for her.

They work great for her---she noticed all of the letters right away.  I'm still getting used to the fact that the keyboard seems to be yelling at me.

On another note, we went to the Bronx Zoo this morning and Maya went on her first camel ride!  Here's a video:

*one label got cut---it was supposed to say "This glance over my shoulder was to tell Dave 'she loves it!'"

A good time for everyone!

Well, almost everyone.

Check out my new poll in the upper right hand corner.  I want to know more about when you come to the blog---take a second and vote, please :) I tried to add options for "I came here from a link on another blog/site" and "I came here from a google search" but couldn't get the annoying poll thing to add the options.  So, sorry.  Feel free to comment with a write-in answer if you're so inclined.

Separation anxiety has its perks

The past two days, boarding the bus has not been pretty.

The bus pulls down the street.

"Maya!  Look!   Your school bus is coming!"  (Smiles, wiggles in my arms, giving me a big hug).

The bus stops and we approach.

"Are you going to ride the bus like a big girl?! To school?!  Oh, you're going to have so much fun!"  (Smiles, giggles, wiggles)

I go to hand her over to the bus matron.

(PANIC.  She clings to me.  She starts to cry.  I'm a mess of untangling the four limbs that she's wrapped tightly around me, attempting to hand her heavy self--as she's now gone totally limp---over.  She alternates between floppy and stiff in an attempt to not get buckled into her seat.)

I wave and blow kisses and then turn and walk away.  I feel like staying to watch is just more painful (for both of us).  Sigh.

So, that's not fun.

The upside of all of this is that she's totally loving me right now.  Absence has made her little heart grow fonder---and while I used to be a given, a constant presence, now I'm suddenly special.  Desired.  Dave & I were playing with her last night, and she kept coming over to hug me.  Me!  She's always been a daddy's girl and suddenly she just wants mama.  I'm not going to lie, it's kind of nice.

I know it won't last forever.  I also know that it's probably embarrassingly egotistical to find separation anxiety flattering, but I don't care :)

She's a happy girl getting off the bus and coming to play with me.  And Parker, too.  I've taken him down to pick her up a few times and it's adorable.  Yesterday Dave was home by drop-off time too, so I was able to get a little video of their after-school reunion:

Almost 2 weeks, and an identity crisis

It's been almost 2 weeks since Maya started school.  The top 3 questions that I've gotten over the past 2 weeks are:

How does Maya like school?
She loves school and her classmates . . . yesterday in her communication notebook the teacher wrote that she knows the names of the other kids in her class and likes to give everybody hugs*.  How freaking cute is that?

* I feel for the hug-ees in this situation since, due to balance issues, I imagine that Maya's "big hugs" are more like tackles.  But tackles of love.

How does Maya like the bus?
She has a love/hate relationship with the bus . . . she wiggles and smiles when it pulls up, silently gets handed over, and sometimes starts to cry as she gets buckled in  and pulls away :(  Her bus ride is long (over an hour) and I hate to think of her sometimes crying (which is not always happening, but sometimes).  I wish I could convince her to sleep on the bus----it would help with the biggest challenge we have right now-exhaustion.  The girl is overtired and heading to bed around 6:15.  It's like we barely see her . . .but we don't keep her up later because we know that the more sleep she gets, the less time she'll spend crying (from overtiredness) tomorrow.

So, now that she's in school, what are you doing during the day?
Um . . . good question.

First, there's the mundane---laundry, cooking, cleaning.  Some deep cleaning (although an allergy flare up has forced me to postpone some bigger projects).  I've read almost 3 books.  I run errands.  I've seen a bunch of doctors, just for me---I can't remember the last time I took the time for check-ups (eyes, internists, dermatologist, gyn---I'm fit as a fiddle!).  I walk Parker.  I spend a lot of time answering emails, especially talking to Maya's teacher and new therapists.  I think about projects that I might do for her, or with her, but I haven't gotten around to actually doing anything yet.

Then, there's the identity crisis.  I can lose a lot of time sitting in silence and thinking about what I should be doing with my time.  I haven't found any part-time job that would work.  I write lists of things that I want to blog about.  I seriously consider whether I could write a book.  I wander around the apartment, picking up a sweatshirt here, or mopping a floor there, and think and think and think about what I'm doing and what I should be doing and how to use my time.

Weirdly, I am trapped in the apartment by my subconscious mind.  I've spent 2 years firmly tethered to it, with rounds of therapists arriving at different times.  I'm used to staying quiet when Maya isn't here----because it used to be that if she wasn't with me, she was napping.  I keep thinking she's napping.  The phone rings and I rush to get it before it can wake her up.  I don't feel free to leave.  I walk briskly to the grocery store, shop, and walk briskly back again.  Taking the laptop to Starbucks for a few hours last week was bizarrely liberating. 

I'm sure that I'll find my footing, but for now I'm still in a little twilight zone.  It feels strange (and probably unhealthy) that I can easily go from 7:15-3:15 without speaking a word.  I play classical music, I do small projects, and I think.  And think.  And think.  I'm a bit lost in my own head.

Having so much time suddenly is nice, in some ways, but I find myself searching for a purpose.  Household maintenance, special needs/medical paperwork, and projects for Maya are all good to do, and I can easily fill my days "getting things done", but I'm searching for something bigger.  I miss teaching, but I don't have the time.  I have grown a love for writing, and think about trying to work at writing and possibly try to write "for real" (like, articles to submit somewhere, or a book) but get lost in thought about how to go about it.

I'm spinning my wheels, but not getting anywhere. 

Yet.

And while I guess I'm feeling a little weighed down at the moment, I rest assured in the knowledge that it's temporary.  I'll find a path and start to pursue it, but it's going to take a bit more time.

We're terrible apple pickers

Our enthusiasm is unparalleled, but our estimation skills leave much to be desired.

Last year we ended up with a ridiculous amount of apples.   (It's pretty mind boggling to look back at that post and see that she was still drinking bottles, not walking, not even standing independently, and just learning to sign milk. My my, how much can change in a year.)

This year, ever so slightly less. 

(By the time I took this picutre I had already starting a big crockpot of applesauce, so we really had a 1 bowl decrease from 2011-2010.)

What can I say?  The sweet cidery smell of the apples that have already fallen under the tree, the cool-enough-for-long sleeves weather, the sun shining down on us . . . it's hard not to stay for hours.  And then it happens subconciously . . . while I'm still here, I may as well just pick a few more apples . . . that one is so nice and pink . . . I wonder if I can reach that one up so high . . . and so on until we're overflowing a bit.

For two years now, Dave says a lot of "Just a few more!" while we're picking . . .  and then "Holy cow, that's a lot of apples" as I'm hoisting them out of the stroller and onto the counter to pay.  At least applesauce freezes well. 


Last year, Maya mostly traveled in the stroller.  This year, she walked :)

And fell.

No big deal!  I'm nearly a professional faller :)

She tried apples for the first time in feeding therapy this week (and was able to chew them!).  Talk about perfect timing.

This was primarily apple licking, but it's still super cute.

I love hanging out with my cousin!

A good time was had by the whole family :)

Maya!  I swear, once this kid learns a joke she never forgets it.  Ever.

News in brief & new giveaway winner

-Maya loves school.  LOVES.  I picked her up yesterday (and will every Weds, to go to after school feeding/speech therapy) and got to see her so excited, running around and pointing to show off the classroom, hugging her teachers, etc.  It's too cute.  The teacher even asked her "Where's Adam?" and she toddled over to bulletin board with the kids' pictures and pointed to the right kid!  (She doesn't know everyone, but she's learning.)

-Maya does not love the bus.  I don't think she hates it, but she doesn't love it.  On the FB page (which you should like) and Twitter (where you should follow) I've mentioned that there have been some tears (yesterday from Maya and then me, today just from Maya).  Today was a better ride, though, with less crying, and the bus people seem nice.  We're hoping that it will get easier.

-Maya's made some great art (pictures in my Twitter feed) and so did I!  The teacher sent home a leaf to decorate with some family pictures.  Maya was a fan :)

-Parker is not having a good week.  He spends a lot of time moping in his crate.  But also, he gets to run in the baseball field on some mornings (I couldn't take him with Maya, because the field isn't fenced in---I worried that he would bolt after something and I would be stuck with the jogging stroller).  He loves the running, but doesn't like the quiet apartment.

-We have a new giveaway winner!  The previous winner never claimed the Leapfrog DVD, so we have a new winner, care of random.org:  Comment #22!!

"Queen Amy said...

I know my letters and my daughters know their letters, but I love coming here and I would really like to win your giveaway and give it away to one of the children I work with who hasn't learned their letters. That sentence had a lot of letters!

August 22, 2011 11:05 PM "

 

Congratulations, Amy!   Email me to claim your prize!

He's just not that into us (doctor style)

Our genetics appointment last week came and went without much fanfare.  It was the same type of appointment that we’ve had a bunch of times now.

Part 1:  We meet with the assistant doctor (and med student/s, usually).  Update them on the past 6 months worth of appointments, discoveries, progress, etc.  Brief physical exam.  I present the new syndrome that I’m eyeing, my reasons for suspecting it, and the test that I think we should do.   (I feel like I'm pleading my case to a judge and resist the urge to take a bow when I'm through stating my case.)  Maya wanders around the room, investigating, searching for things to open/close/rip/crumple/make a mess of.

Part 2: The doctors tell me that she doesn’t seem like a typical kid with Xyz syndrome.  She’s too tall or too short, too nonverbal or making too much effort to become verbal, too high functioning (hey, that one was at least nice to hear), too stable on her feet (really?  Really?) or whatever.  I counter with “Yes, but I read that 10% of kids with xyz are able to walk independently, or that 80% don’t have cardiac involvement”, or whatever.

I resist the urge to throw up my hands and says “Obviously she’s not a typical kid with any syndrome . . . otherwise we would already have a diagnosis.  She’s an outlier.  Join me in thinking outside the box, won’t you?”

Part 3: “Ok, Mom, let me just go and consult with Dr. Hesincharge and we’ll come back to talk with you in a few minutes.”  Door closes, Maya wonders what’s going on here.  We play, and possibly probably shred the paper covering on the exam table.

Part 4: Dr. Hesincharge enters and reaffirms that Xyz probably isn’t a match, but we’ll run the test just to “cross our t’s and dot our i’s”.  I am happy that we’ll run the test, just to check.  Then he says  “So, after this test, there’s really not much that we can do here.” 

I deflate a little, and the deflation surprises me.  

Did he just break up with us? 

Dr. H:  It’s not you, it’s me.  There’s just nothing else that I can bring to the table here.

Me:  Uhhhh.   You’re, like, the doctor.  We need the doctor.  You’re supposed to diagnose things.  You can’t just quit on us.  Shouldn’t you be trying to piece clues together and read research papers and solve our mystery?

Dr. H:  All of the broad screening tests have been run.  I’ve done fancy test #1, fancy test #2 and even fancy test #3!  Then you wanted me to do test #4---even though I didn’t think she had Abc syndrome, so I did.  And now you want a test for Xyz, so I’ll order that too.  But there are, like, a LOT of other letters.  Clearly we can’t test for all of them.  And I could make you keep coming back once a year for physical exams, but I’ll be honest, I just have no clue.   So really, why keep up the charade that I’m actually providing any diagnostic care?

Me:  Ummmm.  This relationship really can’t be that draining for you.  Remember, I’m the one doing the legwork and the research?  But you have the fancy bloodwork forms, and the lab, and the hospital.  I can’t order the tests without you, man.  Don’t give up on us.  In a few months, I’ll start to wonder again.  And I’ll start to google.  And I’ll need your hospital lab and your bloodwork pad again.

Dr. H:  (Sigh).  Well, ok.  I guess if you need me, you have my email.

Me:  Thank you.  That wasn't so hard, was it?  And by the way, doctors shouldn't break up with patients.  Talk about literally adding insult to injury.  Sheesh.

That may be a dramatic elaboration, but the vibes in the room were similar.  “There’s really nothing else we can do here” is the doctoral equivalent of “It’s not me, it’s you”, I think.  (Although clearly, it’s not us, it’s him.) 

And I thought I really liked this doctor, too.  He seemed like a guy who would sink his teeth into the mystery of undiagnosed-ness and analyze all of the puzzle pieces with me, trying different things to see what fits.  But now I’m alone again.  Just me and the medical charts.

So I guess after the results of this test come back (3-4 weeks, but I’m not getting my hopes up) we’ll probably be done with Dr. Hesincharge.   We’ll settle into preschool routines and enjoy the fall and I might not even think about genetics for a while . . . but when I do, we’ll go back to the first geneticist that we saw (who was very nice, but also not very aggressive).  While he may have been a little more relaxed and slower to test, at least he hasn’t given up on us yet.

First time riding on the school bus!

Last Thursday was the first day of preschool---I drove Maya in, and picked her up at the end of the day.

On Friday, I drove her into school in the morning and she took the bus home at the end of the day.  Dave came home early and we waited together (semi-nervously) for the bus to arrive with our big, independent, bus-riding 3 year old.

Can you feel the excitement?

Dave had the video camera and I had the regular camera and we waited and waited . . . and then . . . 

IT WAS HERE!!!!

Wait.

No it wasn't.

That's cool.  Now we just look like crazy people who stand in front of our building and take pictures of school buses.  No big deal.

But a few minutes later . . .

That's it! For real! 

(Notice Dave---we have no shame, people.  We are the crazy first time parents who are documenting every moment.)

Look at her smiling little face!

She was surprised and happy to see us, and as the bus matron walked her out to me I could tell that she was happy, but confused.  Like, I'm home?  The bus brought me to Mommy and Daddy?  Wait, I'm getting off the bus now?

Dave took some video.  If you watch her expressions when she's in my arms, she kept looking towards the bus, like It's leaving?  Is that the end?  Is it coming back?  This whole thing is a little startling! (Also, I had spent the past 3 hours cleaning, so please forgive my no make-up'd, stringy hair-ed appearance.)

Tomorrow morning she'll be riding the bus both to and from school!  Truth be told, this is the first thing that I'm nervous about----I'm worried that she'll be scared and cry when I hand her off to the lady on the bus, and when she sees that I'm still outside when the bus pulls away :(  I hope she does ok.  I'll be anxiously awaiting her arrival in the afternoon so I can ask how it all went.

First day of preschool!

It was a great day :)

Things went down pretty much exactly the way I expected them to---Maya remembered the school & where her classroom was, and she just wanted to go!  We had to spend a few minutes in a conference room (we arrived slightly early) and I had to keep pulling her back as she tried to escape towards the classroom.

Upon arrival in the classroom, she was amused to see the cardboard animals on the walls!  The jungle/safari decorations are adorable (there were even vines) and she was taking it all in.   She found some cookie cutters on a table and started playing with them, which led the teacher to bring out some playdough.  Maya is typically a playdough fiend, but she held back a bit and watched the other two kids (who are so cute, by the way.  Preschool is like the most adorable thing I've ever seen.) play.  After a few minutes longer I went over to her and our conversation went like this:

Me:  Maya, can you say bye to Mommy?  I'm going to leave and you can stay here and play.

Maya: Bye!

Me:  Bye!  (Kisses her head)  Can you blow me a kiss?

Maya: (blows a kiss)

So. cute.

The report that I got at the end of the day was basically like this:  She did good, no tears.  She liked to observe things, but also joined in. (I was wondering about this---she likes to hover around the edges of activity and watch for a while, until she's used to things.)  She didn't eat a lot or drink her milk. (Not super surprising, since I'm guessing she was just overwhelmed and not wanting to eat.)  She gave Adam* a lot of hugs, and tried to give Max* a hug, but he wasn't having it.  (LOL!)

Anyway, without further ado, I present Maya's first day:



*names are changed to protect the hug-ees.