The start of the school and a busload of problems

Maya is back at school and loving it!

Well, mostly.

School started last Thursday.  On Tuesday I called the new bus company and found out that her pick-up time was 2 hours before school started.  Yikes.  They seemed confident that the route would change.  I called the bus company back on Wednesday, realizing that they hadn't told me Maya's route number . . . and this time they told me that we had been deleted from the system and had no bussing.  So then I called the school, who told me that we definitely had bussing.  Ty also were confident that major changes were going to be made, as many of the routes seemed to criss cross around the city.  I learned that rather than letting the bus companies handling the routing, the DOE had taken over the process.  Of course . . . that makes total sense. 

We decided to drive Maya on Thursday & Friday, after hearing that the buses would likely be re-routed over the weekend.    Here are a few first day pics:

Double-checking her backpack while we waited in the lobby

As soon as she hit her new classroom she ran right to the garage toy, pulled out the buses, and started driving them around.  Poor kid is having some bus withdrawal.

 



Thursday and Friday afternoon brought some major meltdowns as Maya was desperate to get on the bus rather than having to go in the car with me.  She didn't care that I was trying to rescue her from the 2.5 hour trip home (yep, seriously) . . . she wanted the BUS.  We heard that the buses were being re-routed over the weekend and the trips on Monday should be more smooth, so we psyched her up, saying "Your bus isn't ready yet, but it will come on Monday!"

All weekend, we talked about the bus. This morning we marched outside and waited.  And waited.  And waited.  The waiting didn't bother me much, because I kept thinking good--this means our new pick-up time is later-that's great news!  But after 90 minutes we gave up and headed into the school in the car (Maya was bribed with chocolate milk and a movie . . . by that point she was tired of waiting, too).  I dropped her off at school only to learn that the buses weren't there, the routes still seemed to be a mess, and maybe I should come back for her this afternoon? 

And so . . .instead of working or nesting or doing much of anything productive, I'm getting ready to drive back into the city and pick up a very angry 4 yr old who will rage against getting in my car.  I'm so bummed that we told her she would be on the bus today and have to break our word. I'm thinking it will be an ice cream afternoon. 

(This is a big, bad city-wide issue right now, with several stories appearing in the paper and on the radio about the obscenely long routes for these preschoolers.  I can only hope that hopefully that means it will be dealt with more quickly.)

There's a silver lining, though.

Bus aside, the school year is off to a great start.  Maya loves her new class, which is a bit larger and has less adult helpers . . . I was a little bit nervous about the transition, but she's doing great.  I thought that she might try to run away to her old class, but she hasn't---an aide even took her there to visit and say hi, and she left without a peep when it was time to go.

The new teacher and new speech therapist seem great, interested, caring, and open to learning all about her talker and how to incorporate it.  (Whew!)   When the important stuff is going so well, it's hard to lose (too much) sleep over something like the bus.  I sure hope that they get this squared away soon, though.  You know, like before this baby is arriving.

Notes from school, and video from the library

Today's blog update is brought to you not by me, but by Maya's preschool teacher (ok, I'll chime in, too, because I can't help myself).  These are notes from Maya's communication notebook (a book that travels to and from school and contains notes from me-to-the-teacher and vice versa.

From Tuesday:

"I think the app is great & she is doing well.  I def(initely) think you don't need to send in the book anymore.  She doesn't look for it really."

The app is great! She's doing well! I should stop sending the Word Book into school, and she's not looking for it anyway!  Woo hoo!  We had been wondering how to phase out the Word Book, since now that we've found Speak for Yourself (aka the perfect app) we want to focus on using solely that for communication.  As it turns out, Maya's not that attached to using the Word Book to communicate.  It's fantastic . . . and a little sad.  Our feeding therapist looked slightly horrified when I told her today, "Don't mention the w-o-r-d b-o-o-k, it's at home, we're phasing it out."  She was all, "Omg, you put so much work into that thing, and now it's done?!"  Well, yeah.  But we're moving on to something better. (And Maya still sleeps with the Word Book and will play with it at home, it's just becoming relegated to the status of security blanket, not communication tool.)

Today:

This one needs a little background. Maya's boyfriend just moved to the other side of the globe.
She had a major crush on a former classmate, and the feeling was mutual.  They gravitated towards each other, and it was seriously adorable.  Unfortunately, his family just moved clear across the planet . . . and we were all worried that she would take it hard.  She's been asking about him in the morning . . . I talk about who she'll see at school and she says, "Ah?  Ah!!!" (that's what she calls him).  She pulls his picture out of the Word Book.  It's a little sad. 

But then I got this note:

"Maya had a GREAT day.  Did such good listening & following directions.  Her & (blue tape blocks a boy's name) now hold hands while walking down (the hall)."

My girl apparently knows how to work a room.  Her former BFF has been gone for all of three days and she's already found a new partner in crime (well, for this week, at least).  I guess she'll never be lonely :)

And just for fun, here's a video from this afternoon.  After therapy we went to the library (a book of mine had come in).  It was a surprise---she didn't know we were going there.  And wow, was she excited:



You might remember that she's library-crazy, although we didn't know that until she got her hands on the Word Book and had words at her disposal for the first time (in the video at the bottom of this post, about 1 min in). All that she wanted to tell us was library-library-library.

 

I'm exhausted, the universe is out to get me, and it may all be worth it, anyway

This week is just a little crazy. 

• Mon: I had a job interview
• Tues-Maya had a doctor's appointment in the morning. I had a support group meeting in the evening. 
• Weds--I met at school with Maya's teacher, then took her to feeding therapy. 
• Today-I worked at a consulting gig. 
• Tomorrow-Maya has an assistive technology evaluation at school (I'll be going, too) -This happened much faster than expected, and I had an emergency phone consultation with an awesome AT guy last night to help me prep for the meeting. 
• Saturday-I'm working at a different job
• Sunday-Frantically clean up the house before Monday
• Monday-A reporter (&camera man-shudder) are coming to meet with us about a possible story

Each of the 2 jobs required prep work and the trading of dozens of emails, as did the AT evaluation tomorrow.  Add to this the continued communication book making, iPad screen developing, writing, and general life responsibilities, and I am frazzled.  Maybe beyond frazzled, actually.  I'm kind of catatonic.  In the mornings, I am focused and multitasking.  When Maya comes home, I am animated and doting.  Once she's in bed, my eyes glaze over as I work on the computer, answer emails, etc.  I'm staying up too late, I'm getting up too early, and I'm willing myself to just make it through to next Tuesday. 

As is typically the case when too much is on my plate, I'm rushing and cutting corners, which inevitably makes more work for myself.  I entered my online banking code incorrectly 3 times today, got locked out of the account, and had to spend 20 minutes on the phone convincing them that I really am myself.  I'm wiped out.

Now that you understand my mental state, you'll see the humor in this story.

The job that I helped with today was grading standardized-style tests.  Last week I did some work from home to help develop rubrics for part of the test, and it was really enjoyable to work on something that was not special-needs related.  Suddenly I remembered that I used to have a career in academics, and I used to enjoy it.  I was really looking forward to sitting in a room full of adults today, coffee cup on my desk, #2 pencil in hand, and grading whatever chunk of the test I was assigned.

I opened the book to my section of the test and started grading my 3 short answer questions.  My brow furrowed as I skimmed the first answer, and I flipped back to take a look at the passage . . .

 . . . which was all about a boy who wished he could play in the NBA, but he couldn't, because he was in a wheelchair.

Seriously?

Seriously.

Screw you, universe.  All I wanted was a few hours off.  Just a little mental break. 

The last question asked "Why was Justin sad when he went to the NBA game?" and I had to read over 300 answers of "He knew he could never fulfill his dream of playing in the NBA because of his disability."

(sigh)

On a happier note, Maya went on her first class trip today!  Her class went to the zoo (which she loves).  Last night I made her a zoo communication board that she could bring with her today (just one laminated sheet because I knew the book would be too heavy to bring).  Her (fabulous) teacher emailed the parents some pictures, and my eyes teared up when I saw this one:

She used the board, and the teacher said she loved it.  She got to talk at the zoo.  And after she came home, she kept telling us "zoo! zoo!" (by pointing) and showing us all of the animals that she saw.  (If you ask her if she saw the penguins, she smiles and holds her nose---that penguin house is so stinky!)

 it's blurry because it's heavily cropped

This was cropped out of the group photo of all of the kids + all of their partners for the day.  Look at her clutching her words.  She's really getting attached to the word book, she knows it's how she can make herself heard.

Totally makes the late nights working on that stuff worth it, I think.

How we talk with our (mostly) nonverbal girl

This is an unedited, not-at-all-set-up photo of what my coffee table looked like this morning. 

That's why there hasn't been a post in a few days . . . I'm nearly totally consumed with Project Communication.  (And the little part of me that wasn't consumed with communicating was actually doing a bit of consulting work, so no free time at all.)  So, it's fitting that I'm here writing another communication-centric post.

Last week I was talking on the phone to a friend, retelling events from the day.  I mentioned Maya's Word Book, and said something like " . . .and then all day she kept saying "library! library!"  My friend replied "Oh my gosh, that's so amazing!!!", which left me puzzled.  It was, after all, more amusing than amazing. Then I realized that she thought Maya was literally saying "library".  I explained that I meant she was "saying" it with the picture card, and then I thought a lot about how Maya "talks" to us.

If you have a child that talks, you probably take a lot of communication stuff for granted.  For us, communication is something we're always working on.  I'm envious of a mom who can call "What do you want for lunch?" over her shoulder and listens for her child to shout an answer from the other room.  For us, talking is deliberate, requiring proximity and props.  Thankfully, most of the time it's pretty easy to understand Maya--she knows what she wants, what cracks her up, and what she likes, and she'll keep trying to "tell" you until you guess correctly (or she gets frustrated and cries,  which is the the saddest part about a kid who can't talk).

To that end, here are some of the ways that we communicate with our (mostly) nonverbal girl.  (Did you see on Facebook that her vocabulary has doubled?  Now she's got "bye" "done" "mama" and "dada"!)  A lot of it is common sensical, but may illuminate things a little bit for readers with "typical" kids who wonder how parents communicate with nonverbal kids.

Note: Maya's receptive language is, without a doubt, one of her biggest strengths.  Because she's able to understand everything with say, I do not need to sign or present picture cards for her to understand what I'm saying.  Also, she has high communicative intent (she wants to tell us what's on her mind), which is also very helpful as we work together to help her express her thoughts.

1. The most basic, oh-so-simple stuff 

• First of all, we ask a lot of yes or no questions.  She can nod or shake her head, and make small yes ("eh") and no ("nnn") sounds. 
• We present her with choices (foods, for example) and she can pick one.
• We ask her questions and show her how to show us her answer Ex. "Maya, do you want to play in the living room (pointing towards living room) or your bedroom (pointing towards bedroom)?"  Then, she'll point to show us.
• We still use signing.  The problem with signing is that we understand her signs, but they are kind of garbled . . . which is why we made the MSL (Maya Sign Language) translation video for her teachers.
• We understand her sounds.   "mmm" means, like, 17 different things, depending on context.  Sometimes we have to guess a few times, but she's (mostly) patient.

2. Low tech stuff

• Paper & pencil (or wipe board & dry erase marker):  This is great for choices on-the-fly, and works on word recognition as well.  Maya isn't currently reading, but if I tell her the words that I've written down, she will remember and choose.  (It's tricky to explain, see the video below)
• Hands: Even lower tech the paper & pencil, I use this when I want her to make a choice and I don't have any pictures or paper with me.  Check this out in the video, as well:

• Picture cards (first made with photos, now with BoardMaker symbols) are really helpful.  When presented with a large field of choices, Maya will work to search for something that she wants, or something that she wants to say, and will give it to us.  We started with just a few cards to make choices with, and now are moving our way up to a full communication book (which explains that picture of my coffee table.  I've been staying up late to make more and more words for her). 

3, High tech stuff

• iPad & Proloquo2Go:  As mentioned a few months ago, Maya has an iPad and an app called Proloquo2Go.  P2G is great, but the iPad is cumbersome.  To truly use P2G effectively, Maya will need to learn to navigate through folders with the touchscreen, tapping and sliding her finger to do so.  Right now, those motor skills are challenging and distracting enough to discourage its use (although we do have a stylus that sometimes helps with tapping buttons).  This week Maya will start using the iPad at school during mealtimes only (so she won't have to navigate through screens) and use the Word Book the rest of the time.  Hopefully she'll slowly adapt to the iPad and we'll use it more and more.  The biggest benefit is that it literally has a voice---she lights up when she hears it say what she's thinking :)
• Other devices:  We have submitted paperwork that will give Maya an assistive tech evaluation, so we can see if any other devices would be a good fit for her right now.

So, that about sums it up.  Even though she doesn't talk, she actually communicates very clearly (to us, anyway). 

It's very exciting to see her eagerness to communicate, and I'm anxious to see how far she's come in a few months.  Trying to launch the Word Book and iPad simultaneously is nearly drowning me (especially after 1.5 hrs at the Apple store yesterday, and then a 2.5 hour upgrade/redownload/restore process last night), but it will be good.  Maya will show us what works best, it's just a matter of being patient and determined and teaching her both systems, so that we can follow her lead.

In totally unrelated news, here is the cutest art project ever (she brought it home today):

Those jungle animals are made from her handprints!  This could not be cuter.

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.

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.

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!

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.

I think she wants to go to school

We stopped by the preschool today to drop off some giant cardboard animals.  Remember the ones that I scored for Maya's birthday party?  Well, her classroom is starting the year with a jungle/safari theme, so I volunteered them to the teacher as potential decorations.  (I'm not sure if they'll really have room for them--they're huge!---but she said to bring them in.)

Maya got to meet her teacher & assistant teachers (who were all lovely).  As they crowded over her stroller she got a little whimpery (we were also coming straight from the hospital, so it had been a long morning).  They asked her if she would like to come to school and play in the classroom and she nodded with wide eyes.  They showed her her special chair (with her picture on it---so cute!) and some of the decorations.

We only stayed a few minutes--they were busy setting up and I didn't want to invade their time.  I said to Maya "Say 'bye-bye'" and she said "Buh!"

And then her face crumpled.

And then the tears started.

I smiled sheepishly and told them, "I knew this would happen.  She's really ready for school.  She doesn't want to leave."  And to back me up, she started pointing at the classroom through her tears, signing play, and trying to get out of her stroller straps.

Through the hallway, down the elevator---hysterics.  I kept telling people "She doesn't want to leave school!"  and they were sympathetic.  In the downstairs lobby, we pulled over to have a talk (and videotaped it to show Dave how much she wanted to stay). 

(Lest you think I'm heartless, I was holding my cell phone camera in one hand and off to the side.  I wasn't hiding behind my cell phone instead of consoling her.)

My I-don't-want-to-leave-school girl:



She's so ready.

I hope she feels the same way on Thursday.

The Maya Handbook

I'm taking a break from a project I've been working on in my free (read: non-Maya) time today: a Maya Handbook.  A guide for her teachers/therapists to all-things-Maya.  It seemed like a great idea---since she can't talk, I'll talk for her in a pre-first-day-email. 


Frankly, it's turned out to be kind of exhausting.

I started with some simple stuff, like her general personality.  Summary: 1. She's delightful but stubborn.  2. She sometimes acts like she can't do things that she can (so don't let her trick you) 3.  She listens to and understands way more than you will initially be able to see, and 4. She'll do anything for a laugh (fake sneezing and fake laughing are on the rise).

That wasn't too hard.  It's kind of fun to tell people about my kid :)

Then I moved on to some physical stuff, such as: 1. She moves too fast and doesn't pay attention to where her feet are, so she will fall, suddenly and hard. 2. If she starts to lose her balance (even in the slightest), her whole body will tense up and, again, she will fall.  If no one is in arm's length, she will reach for the closest child or object and possibly pull them down as well. 3. I talked about different PT techniques, goals, etc we've been working on and expressed my excitement to see what tips/techniques they will have.

Well, that wasn't as fun.  I would rather just tell them "Do you see her WALKING?!?!  Isn't it AMAZING?!?"   Instead, I'm trying to think about things they should know to prevent possible accidents . . . but that just forces me to imagine accidents.  And here I am again, pointing out the things that she can't do yet (stairs), and the things that make her different (suddenly locking up) . . . and that just makes me dwell (however briefly) on her can'ts and differences.  (sigh)

Then I try to explain her communication method, which is a combination of:

• signs (modified by her limited dexterity, these aren't ASL, but MSL---Maya Sign Language---Maya, Dave & I are the only ones fluent---although I understand more than Dave does, and sometimes even I am lost)
• sounds (so far on my list, "Mmm" means 8 different things---from more to cow, depending on the context)
• gestures (which are different from signs, such as pointing or waving arms)
• whines (which are, sadly, on the increase as frustration builds and she can't make herself heard).

And now I'm just agnst-ridden.  


The same fear that I've had, since she turned 2 and I started to imagine preschool.



Will they understand her?  


In my sad, dark place (where I don't sit for long) I have visions of her signing that she is thirsty, and no one understands-----or worse, they pull her hands down and tell her to stop (as her sign for water more or less looks like she's hitting herself in the face). 

It makes me tear up even to write that----my little girl begging for water in a foreign language and having the only-English-speaking adults saying "stop that".

And then I snap myself out of the drama and I'm glad that I'm writing this guide (and tomorrow I'm going to film a few video clips of the signs, make a MSL video dictionary so that the teacher will have a heads up).  They'll have a heads up.  And these are really good teachers at a  really good school, they've dealt with nonverbal preschoolers for a million years and this is probably old hat.   Really, I have to be glad that I won't be there to translate----the frustration of not being heard should prompt more concerted efforts on Maya's part to clearly communicate. 

But I worry for her.

I don't have a lot of "I wish I was just a mom of a typical kid" moments, but tonight . . .well, I had one of them.  I wish I wasn't writing a translation guide.  I wish she could say "I'm thirsty" . . . I wish she could walk around without the random seizing up and falling down.  I wish that my first-day-of-school jitters weren't compounded with the extra worries that come with our unique situation.

I'm not dwelling in it, because I'm also grateful---grateful that I get to write about her unique way of walking (because she's WALKING-and almost RUNNING) and grateful that I got to write about the sounds she makes (because she's trying) and the things she understands (like letters!  my smart girl). 

So I'm done for the day, and sleep will recalibrate my attitude.  Tomorrow: back at it.  And you know that Maya (the ham) will have a fabulous time making a video MSL dictionary.  :)

Maya picked this ****giveaway*****

In the past I've talked about Maya's love for letters and how amazed I've been as she seems to be learning them through osmosis.  This is due partially to her natural interest in letters (she's always been interested in the writing on T-shirts, bags, etc) and partially to one really great video:

When I saw Maya starting to recognize letters, I asked for alphabet exposure ideas from one of my message boards, and several of the moms replied "Teaching letters?  All I did was put on Leapfrog Letter Factory and my kids magically learned them."   So I picked up the video, put it on, and a few short days later Maya was already copying the letter sounds (check her out in this video).

Amazing!  And since she's nonverbal, really amazing.

She can't say "A" (like the long A sound in plate), but she can say "ah"   . . . and quickly I could show her an A and say "What letter is that?" and she would say "Ah!".  I would never have thought to teach her to tell me the letters with their sounds, but it worked.  Suddenly she was able to tell us how much she was understanding.  (Similarly, she can say "ba" and "da" but not B or D.)  I couldn't believe how interested she was in the video, or how quickly she starting picking up the new information.  I'm a big fan. 

So when Maya grabbed the video off of the store shelf the other day (she recognized the box, sneaky girl) and I saw that it was on sale, I decided to get one for a giveaway :)

This video is my favorite.

You guys are going to love it!

(FYI: I am not affiliated with Leapfrog in any way.  I'm not receiving any sort of compensation from the Leapfrog folks.  Maya just loves this video, and I've been impressed with how much it has taught her, so I thought I'd pay it forward.)

Here's how to enter the giveaway:  Pay attention, because you can enter up to 5 times! 

 

1. Leave a comment on this post. Any comment will do . . "Hey, I want to win!" "Giveaways rule" "Maya is awesome", etc :)

 

2. Like our page on Facebook ("Uncommon Sense Blog") if you don't already. Then, leave a comment here that says "I'm a Facebook follower!" (If you're already a Facebook follower, you can leave this comment too, of course.)

 

3.  Follow us on Twitter!  (This is new! See the twitter feed on the top right corner of the blog?)  Our Twitter name is "UncommonBlogger". Then, leave a comment here that says "I'm following you on Twitter!" 

 

4. Share the link to the giveaway on Facebook. Then, leave a comment here that says "I shared the giveaway on FB!"

 

5. Retweet the link to the giveaway on Twitter (once you follow me on Twitter, you can just retweet my giveaway post).  Then, leave a comment here that says "I retweeted the giveaway!"

 

Remember to leave a separate comment for each entry!

 

Winner will be chosen the evening of Tuesday, August 30th.  The latest that an entry will be accepted is 5pm (EST) on Tues, 8/30, via random number generator.  The winner will be announced the same evening and have 2 days to contact me before I pick a different winner. 

Poultry in the alphabet hallway

Side note: I don't know why the last 4 pictures here are sideways.  I'll try reuploading them again later and hope that blogger is working better.  For now, turn your computer or your head 90 degrees to the left.  If you have a desktop, I suggest turning your head.

I've been in major DIY mode the past few days.  Maya & I took a trip to Lakeshore over the weekend, where I had to restrain myself from buying up every alphabet/sight words/colors/shapes/numbers product that they have.  I bought a bunch of stuff and walked around snapping cell phone photos of everything that made me think "I could make that at home.".

(Side philosophical note: I am not a huge proponent of forced education on little kids.  I think toddlers should get to play like toddlers.  But Maya loves letters . . . and she loves words.  Her favorite hobby this week is sitting on the floor and reading magazines, pointing and yelling at the pages that have ads with giant font letters.  So if she likes letters and words, then I'm going to surround her with them.   For as long as she is nonverbal, she will be underestimated by the masses, and I'm going to help her get as friggin' smart as she can, so that she will surprise and enlighten many people . . . teaching them not to judge a book by its cover, for sure.)

Anyway, I've been busy with my trusty laminator:

I totally love one project that I did today.  I bought alphabet cards, trimmed them so that I could squeeze in 2 per laminating pouch, cut them out, and lined the hallway with them (at Maya's eye level, not mine). (They have to be laminated because otherwise they would likely be crumpled/bent/torn up at some point)

laid out and ready to tape up

One side done

She was pretty excited to wake up from her nap and see a letter-filled hallway :)

As I walked past the kitchen, I noticed that it was looking very industrious today as well.  Those are some herbs from a weekend fair that I need to repot, a rice cooker that was making rice for tonight's dinner, and my crockpot, in which I'm attempting to make homemade yogurt.  If it works out, it will be a delicious money saver----but I'm not counting on anything until I taste the first batch.

And Maya had a typical 4-therapy Monday.  During the day's last session, I shot a little video.  Just typical therapy . . .

Oh yeah, except the ducklings were back.  And big enough now that they just waddled free.  Dave came home, got changed, peeked into the living room and said "There are ducks?  Wandering around our apartment?"  Seems about right, I think. 

Maya was delighted to see them again, especially was one frisky duckling started tickling her:

Hey!  That's my foot!

Oh, duckie, that is just too tickly!

Virginia got them to follow her into the hallway . . . 

. . . and when they decided to all lay down, we said "Maya, look, the ducks are tired.  They're resting."  . . . so she decided that it would be best to lay down and rest, too.

Goodnight, ducks.  I'm right here if you want to cuddle.

Celebrate good times, c'mon!*

A very quick update . . .  I got a few emails/ims this weekend asking "How did the preschool meeting go?!" and I replied "You didn't check the Facebook page, did you?" (Reminder: The Facebook page is public, so you don't have to be a member of FB to see it.)  It's just the easiest way for me to put up a mini-update, such as:  The preschool stuff is done, and went well!

There were a few moments of tension during a conference call with the school director in which we were debating whether she really needs a one-on-one aide, but it was resolved when I brought up my safety concerns (she falls, hard, and will take out other kids as she goes down.  And she has potential choking issues and can't self-feed).  So she's in the school we want, in a nice small class, with a one-on-one, and she'll be bussed, leaving me free to lounge on the couch, paint my nails and nap all day. 

We had a lovely weekend of celebrations, starting with brunch after the meeting, and including 2 evenings with babysitters.  And on Saturday I went shopping, while Maya & Dave had some quality one-on-one time, including a trip to the zoo:

Hey you polar bear!  Look, I have a polar bear too!

Today we had to cancel our morning therapies to head to the hospital for a hearing test.  (It's not under sedation or anything, that's just where they do it.)  I'm not a fan of this test--we have to battle morning traffic to get down there, and the test involves sitting perfectly still and silently while she's on my lap and has to respond to sounds.  Last time the room she got scared by how quiet the room is when the doors shut, and if she loses focus the whole thing becomes kind of pointless.  And I think her hearing is fine, but we have to go every 6 months or so anyway.  Sigh.

The balance

Tomorrow we have our IEP meeting, when (hopefully) we will sign the paperwork that puts Maya in the preschool that we really like, and then a big weight will lift off our shoulders.  :)

A few months ago we had the preliminary IEP meeting, in which I clashed with the CPSE official.  I said that I wanted a bunch of after school therapies approved, he said that we should just start school and then come back with the school team in the fall if we all think Maya would benefit from more therapy.  I said that wasn't good enough (because really, with her evaluation results, she should totally qualify for additional services).  He said too bad (basically).  I ordered IEP books and planned a fight.

And then I changed my mind.

I asked questions of our therapists, and then spoke with other families whose children started preschool this past fall.  I researched.  I thought about school starting, schedules changing, no naps (the preschool doesn't have naptime), and realized that I only want Maya to have therapy maybe twice a week after school.  Then, I decided that the afterschool therapy we need to keep is the private oral motor stuff, which targets both feeding and speech (the therapist is PROMPT certified, for those who know/care about speech stuff).  She'll be getting OT, PT and speech at school, and I feel like her OT and PT needs are more typical than her oral motor issues.  That's where we'll need an afterschool specialist.

I don't make decisions lightly.  There was ruminating.  There were eyes-filling-with-tears.  There was anxiety.

Because if your child has special needs, you think a lot about needs.    The need for PT to address balance, walking, climbing stairs, core muscles, etc.  The need for OT to address fine motor skills, eventually holding a pencil, dressing and undressing, etc.    The need for special instruction to address play skills, attending to activities, interactions, etc.  The need for speech & feeding to address, well, speech & feeding.  And it's very difficult to determine which things are most important, which ones to focus the most energy on . . . but you have to make those choices, because it's really hard to work on all of them, all the time. 

But we made our decision, and we're ready to (hopefully) sign for the school!  And we're excited!  And hoping that it goes smoothly!  (Send good thoughts, the meeting is at 9 tomorrow morning.)

And when I was telling someone (someone lovely, who only has Maya's best interests at heart---someone who meant totally no ill will at all) that we're going to sign for the school and not argue for afterschool services right now (although I'm keeping an open mind about meeting in Oct/Nov to add services in) this person said, "You're only going to take what the school offers?"  And I said "Yep."  And they said "I think you should do more."

(I think I clenched.  Then it started to echo in my head.)

I think you should do more.

(and then my stomach dropped)

First off, Maya has a lot of people in her life.  She has 5 therapists (and another 3 that we used and then parted ways with), 6 doctors (and another 3 that we used and don't currently need), and a bunch of family and friends, too.   The decisions that Dave & I make on her behalf might not be everyone's ideal choices . . . but frankly, this isn't a democracy.  When I was thinking through our options, I asked for opinions and advice from the members of our team . . . but I'm not polling the crowd for votes.  We're the parents, it's our decision.  This is our life. 

I think you should do more.

Second, this is our life.  Life. 

Where does the balance fall between life and therapy?  It's a tough question, isn't it?  For the past 2 years, therapy has filled a large percentage of Maya's life (and I wouldn't change that if I had to redo it.  She loves the therapists, they love her, and she's making great progress).  We have 17 units of therapy each week . . . and when someone asks if we want to get together, I have to sheepishly explain that we're only free from 10:10-10:50 on day A, or from 12:15-1:15 on day B.  Despite the fact that Maya is only 2 and I'm a stay at home mom, we are constantly busy.   We are a revolving door of therapies and doctors appointments.   Since Early Intervention is a birth to 3 program, it was easy to think "3 years of intensity----we'll do everything we possibly can!"  (I even left work, remember?)

But now we're leaving EI and going into the school system.  And I'm starting to wonder . . . how long is this race?  It's certainly not a sprint anymore . . . is it a marathon?  A half marathon? How many years will Maya need therapies for?  

And in looking at a longer road, it's time to think more about the balance.

Because I certainly don't want to look back and wish that we did more.

I think you should do more.

I think we should do more, too.  

More time for playdates in the neighborhood. 
More time giggling at dogs in the dog park while Parker runs and we enjoy the sunshine.
More time walking at a leisurely pace (and less time glancing at my watch to see if we need to race back for therapy).
More time at the playground, or sitting on a blanket in the park.
More time for Maya to walk outside (instead of throwing her in the stroller because we don't have time).
More time to play at night before a super tired little new preschooler has to sleep.
More time for spontaneous trips---the zoo?  the museum?  the grocery store?
More time when it's just the 3 of us.
More time, more time, more time.

Not only am I thinking about Maya's therapy goals, I'm thinking about her life.  And our lives.  And I want to celebrate in September, and get her off the bus and play . . . not think "I'm sorry you're so tired honey but let's just hop in the car and run over to your PT/OT session." 

She will (hopefully) be going to a wonderful school where she will be learning and developing from 8:30-2 every day, surrounded by adults who are highly trained in working with children with special needs.   

So how about after she gets off the bus, 3 days a week she'll be therapy-free and just get to be a 3 year old girl? 

How about we don't stretch her to the point that she's asleep or in tears by the time Daddy gets home?

How about no more frustrated tears for me when I can't figure out what to cancel in order to fit in an appointment, or a playdate, or a birthday party?

How about we stop racing, and try to hit a sustainable stride?

So here's to tomorrow, when we will hopefully have a simple, amicable, stress-free meeting, the papers will be signed, and our spot in the wonderful preschool will be secured.

And (hopefully) here's to next year, Maya's first year of school, where we will walk the tightrope of therapy life and real life, and make steady progress and lots of memories.

A DIY label project that I can help you with

Lately I've been aggravated.  I've had a few projects going on, and went to an iPad workshop on Thursday, and all week long I keep thinking "Someone must have done this before.  I can't be the only person trying to  put labels around an apartment/use an iPad for communication/do other random teachery things for a nearly-3-yr-old with delays." 

It's so frustrating to think that other people have done some trial-and-error stuff and perfected some great ideas, and I don't know what they are.  Instead, here I am, trying to come up with everything on my own . . .  and I never get anything right the first time, so I have to keep redoing the same stuff. 

Here's an example:

I went on a preschool visit and saw that they had labeled everything with words.  Great idea!, I thought.   I can totally do that.   (While I don't expect her to start reading any time soon, it can't hurt to create a text rich environment.)   And so I made labels:

written on sentence strips, laminated, and then hung up with painter's tape

Then I later realized that if we're teaching Maya with PECS (picture cards, or pictures on the iPad), the labels should really include a picture icon in addition to the words.  Oops.  So I have to redo them.

Then I find out that kids learn capital letters first.  So they have to be fixed again.  Now they have to be all caps and include a picture.  Also, everyone who texts/emails/blogs/etc knows that CAPITALS are for YELLING.  So I was less than enthused that my "chair"s  and "door"s were about to become "CHAIR"s and "DOOR"s.  I envisioned walking into my kitchen in the morning and being visually assaulted from the moment I flipped the LIGHT SWITCH and walked past the CABINET, DRAWER, and GARBAGE to the REFRIGERATOR. 

Not cute.

(As it turns out, with a decent font and good clip art, the text is less AGGRESSIVE than I thought it might be.  Thank goodness.)

Here's the step-by-step process (so you can do it yourself without having to reinvent the wheel) of the new-label-making. 

Step 1: This is what I came up with, through googling clip art images and formatting in a word document:***

 Also, I can't spell REFRIGERATOR, in case you didn't notice.  I fixed it and reprinted, but I'm too lazy to take new pictures, and I also don't care if you think that I can't spell.

Step 2: I cut out all of the labels, because they laminate better individually:

Step 3: Set them up in sheets to be laminated:

Pre-lamination

 Post-lamination

 Post-lamination, again

Step 4: Cut out the laminated squares.  *Remember to round the corners, because kids will rip these things down ad nauseum  and you don't want scary, sharp edges.

Step 5: Hang them up (painter's tape works well) around eye level.  I taped these up near the bottom and then remembered she's not a crawler anymore, and I had to move them up!

 These say closet, bathroom, closet.  I mean, CLOSET, BATHROOM, CLOSET

One labeled drawer and cabinet.  Her speech therapist said there's no need to label every single thing---which would be overwhelming---so just pick a few to label. 

***DO YOU WANT TO MAKE THESE LABELS AT HOME?!?

I've already done the work to find decent images and format this stuff.  There is no need for you to start from scratch---shoot me an email (uncommonfeedback@gmail.com) and I would be happy to send you the word document.  You may need to tweak them (you probably don't need "PARKER'S CRATE") but at least you won't have to reinvent the wheel.  It makes me crazy that we all are constantly trying to come up with new things, and we probably could just get some great easy ideas from each other.