First time walking in the snow

Welcome to the latest installment in my series "First time walking . . . ".  We had first time walking (back in Feb. '10)---followed by first time walking outside, first time walking at the playground, first time walking at the apple picking place, and now first time walking in the snow.  Others that I haven't mentioned on the blog include: first time walking in the sprinklers, first time walking in New Jersey, first time walking in the lobby of the building, first time walking around the tree on Christmas morning . . .

And I'm unapologetic about drawing out this "First time walking" milestone over the past 11 months, because it's amazing.  I never stop being appreciative about her walk-ability, and I delight in every new experience she gets to have as a walker.

So, today, she got to walk in the snow.  She stood pretty still for a full minute or two, delighted by the snow but unsure of it's walking surface:

(we were just going to the diner, hence no gloves)

But then she became bold, and walked and ran (well, the way that she runs), and yelled at a guy with a shovel (yep.  she's not shy.).  (A little sledding clip is thrown in here, too)

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.

 

Happy birthday to the best dad around!

It's Dave's birthday!  Last year, I wrote this whole big Dave-is-so-fantastic post, which was really nice at the time, but left me with kind of no way to top it this year.  (You can look here to see why Dave is so fantastic, by the way.)

This year I decided that I would teach Maya to sing part of the Happy Birthday song.  She was chiming in perfectly over the weekend, but I guess the novelty wore off, because it was like pulling teeth today.  On the third try, she jumps in (and then goes off on a typical sneaky/naughty tangent):



Happy birthday, Dave!  You're awesome and we love you to pieces.  We're lucky to have you :) 

  
 

It's all happening

I bring to you Maya, this morning, at breakfast:





She's had her hands on the app since Thursday, on and off.  That's 2 days.  The foundation is being laid. 

My tough outer shell is all "This will take time.  She will be slow to attach to this, and she might get frustrated.  Don't force it, don't get discouraged.  Don't get your hopes up."

But the tiny inner excitable part of me, the one that squeals like a little kid when snow falls or I see the ocean, is all: "It's happening, it's happening, she's already saying things, this could stick this could work."  I keep trying to shut her up, so my hopes don't get too high . . . but, well, it's been a good day over here.  At lunch I kept saying "Maya, we're eating broccoli and chicken nuggets." And then she would start tapping to say "cereal bar.  Yogurt."  I guess it's all about food :)

I'm cautiously excited.  It's beginning. 

 
 

Stand Up.

Edited to add(1/14): I've received several emails from people who are friends of CHOP, asserting that this is not the full story.  I agree that the process to determine candidacy for a transplant is probably quite complex, and I am hopeful that the IQ of this girl was not the sole cause for her denial.  However, if "mental retardation" played any part in her denial, then that is despicable.  I'm happy to do my small part to spread the story of another special needs parent who is begging to have her story spread.  But I'm not really interested in engaging in rounds of debate about it-because I simply don't know any more than what is here.  I'm not leading a crusade, I'm just sharing a story that a mom asked for people to share. 

A story popped onto my Facebook feed this morning, and my friend included a tag line about being angry that people judge the lives of people with disabilities as "less worthy" or "having a lower quality of life" than others. 

I didn't open the link.

Sometimes . . . well, sometimes I need to take breaks from all-things-disability. 

An hour later, it popped up again.  And then again.  Finally, I opened it. 

You need to hear this story. 

I think it's best if you go right to the source.

In case you're not in a link-clicking mood, here's the summary: A little girl (Edited: She's 2, nearly 3 years old. Younger than Maya. Her picture is on that link) has a genetic condition.  She will need a kidney transplant in the next 6-12 mos (this is expected, and her levels have been monitored for the past 3 years).  At her appointment at CHOP (Children's Hospital of Philadelphia, known for being an excellent children's hospital) on Tuesday, her parents were told that she will not be eligible for a transplant because she is mentally retarded.

She will not be eligible to get a kidney transplant, which is necessary to keep her alive, because she is mentally retarded.

The end.

When the family (in a rage) said Well, whatever, we'll just find a kidney in the family to donate to her the doctor responded with We will not do her surgery here.  She in ineligible because of her quality of life because of her mental delays.

If you are somewhat horrified and somewhat skeptical, thinking Come now, there must be more to it than that . . . no doctor gets to look at a little girl and say "Oh, you are delayed and you're life isn't worth living, so I will not give you a kidney and you will die" . . . well, you are wrong.  That's the story.

Are you ok with that?

Because you can be damn sure I'm not ok with that.

Stand up, people.  It's time to be counted.  If this were Maya, I know that you would help me rally the troops (and perhaps a firing squad) . . . so help Amelia's family.  I can't imagine the state of her parents.  Let them see their rage against such a gross misjustice spread and affect change.

 Take 45 seconds and do these 3 things. Please.

1. Go to this link and sign this petition, which demands that CHOP grant the transplant (and will hopefully cause a policy change at the hospital):

2. Write on CHOP's Facebook wall to express your disagreement/disgust/other adjectives.

3. Share the story.  Share Amelia's mom's link, or the link to this post, or the link to the petition.  Put it on Facebook, tweet it, email it to friends.


We cannot be ok with this.  And if you're not ok with this, you have to make your voice heard.

The object of her affection

I was just going through some files on my computer and found this gem of a video, taken a few days after Christmas (you'll see the clutter that rapidly accumulates when we're on "vacation").  Maya and Parker were like little magnets---they kept separating only to get pulled back together.  I started filming, and by the end Dave and I were nearly in tears (you'll hear it). 

In fairness, it should be noted that Parker & Maya play like brother and sister (or 2 puppies, whichever analogy you prefer).  In this video, she's playing the role of the instigator, but there are other days when he follows her around, nudging her or bumping her to play.  (He's very smart around her---you can see a few times in the video where he moves slightly away (she has a habit of falling suddenly) and other times when he just freezes and stays still and kind of absorbs her weight.)

You have to admit they're pretty cute together.







If you're new around here, go back to April 2010 and you can read about (and see) when we got Parker.  He's a standard poodle, and we got him to be Maya's service/therapy dog.  Once she started walking, he shifted from training for service dog to remaining a therapy dog.  He's worked with her during sessions, and is just an emotional (and sometimes physical) companion for her, and for us.

Choose to rock

I'm beyond stretched at the moment.  The past few days have been a swirl of figuring out Speak for Yourself, spreading the word about it, and deciding how to start introducing Maya to it.  Oh, and working. And maintaining the homefront (our apartment, I mean, not America). Oh yeah, and taking care of Maya.  Not much time left for writing. 

Today I met with her teacher to demo the app and speak with her about which vocabulary we'll be opening to start with (opening & closing the vocabulary can be seen here).  Tonight I'll be setting it up because it's going to start traveling to and from school tomorrow.  I don't want to be nervous, but I am.  It might take a while for Maya to get on board, and to gain the skills she needs to work a communication app, and I'm worried that if we have a rocky start I will catastrophize that it will never work. 

In lieu of something fun and original, I bring you a little snippet of writing that I did that has yet to appear on this blog.  I wrote this as part of an interview post that I did for Love that Max (go here to see the entire thing) in December.  The last question was a simple prompt: "I rock because . . . " and it was my favorite one to answer:

I rock because…

I choose to.  Plain and simple.

I don’t want to have a child with special needs.  I don’t want my daughter to have to struggle and work hard to do things that come easily to other kids.  I hate watching her struggle to express herself, while other kids can chatter away incessantly. 

It’s not fair. 

So from time to time I get frustrated and have a good cry, and the other 99% of the time we just live life.  We play, we go to the zoo, we do art projects, we go to the dog park.  We make up silly games and silly songs and try to enjoy life as it speeds by.  We drink good coffee and cheap wine and laugh and I watch my crappy TV when Maya is asleep and I don’t dwell on the bad stuff.  I try not to worry about things until I need to. 

In the end, everyone has their own uncontrollable “it’s not fair” stuff . . . the unexpected death of a loved one, sudden unemployment, a cancer diagnosis, a spouse’s infidelity.  Life can throw a game-changing, tragic occurrence to anyone at any time, and in an instant things can go from just-another-day to things-will-never -be-the-same.   And every person who ends up on the receiving end of one of these curveballs has a choice . . . you can choose to mourn forever, to bemoan the unfairness and wish that you could go back to “before”.  Or, you can choose to have a good cry and move on.  To rock on. 

I choose to rock. 

  

The search is over. We've found our communication solution.

If you've been with us for a while, you know that for a while (a little over a year, now).  Actually, almost exactly a year ago I dove in with the iPad, trying to customize Proloquo2Go in a way that would make sense to use with Maya (who was 2.5 at the time).  We used it on and off but it just didn't stick.  When school started in the fall, we re-sharpened our focus on communication, trying a variety of things:  the Word Book, the iPad, and finally, fighting for a trial with a full communication device (the Dynavox Maestro).

About 2 weeks in, I realized that the Dynavox wasn't what I was hoping it would be.  It was too big, for one, and poor Maya had no chance at carrying it anywhere.  More importantly, the grammar was cumbersome.  The pop-up windows were confusing.  The buttons kept moving---one one screen "clear" would be in the upper left, on another screen it would jump over to the right.  Some screens had no "clear" at all.  We couldn't find a rhythm.

I met with Maya's teacher and we were on the same page---the Dynavox was a bust.  Back to the drawing board.  I decided to take the holidays off, and planned to jump back in to the communication search in January.  Now that I had seen first hand that the devices aren't always magical, I was going to re-focus on the app market.  Surely, there must be something that could work.

And then something awesome happened.

I got a Facebook message from a childhood friend (who is now a SLP), along the lines of "Hey, I saw this new app (released Dec. 21st) and thought of your big app search.  Check it out."   I poked around and found the demo video for the app and started playing it, only watching halfway as I poked around online.  About fifty seconds in, they had my attention.  A minute and thirty seconds in I was thinking Huh.  This is actually pretty clever. After watching the first two minutes and forty seconds I was completely sold (and the cool features just kept coming).  This app is brilliant.  Brilliant.

Our search is over.  There is no other app---or even device---that I've come across that is as smart, easy to customize, clear, and logical as this app.  It's a huge relief, and really exciting, to have found something that has the ability to start working immediately, and also the growth potential to use it forever.  For as long as she needs assistive technology to communicate, this app will fit her. 

She won't ever outgrow it, but it's not too complex to jump right into.  

It's perfect.

It's called Speak for Yourself. (SfY)

I downloaded SfY yesterday morning, and spent some time throughout the day learning to customize it (which is remarkably easy, compared to some of the devices I've seen). 

First, let me tell you about it:

• Speak for Yourself is a full communication app.  It's highly (and easily) customizable.  It comes pre-programmed with about 5,000 words, and you can add, delete & move words. (it can hold up to 14,000 words, and has a QWERTY keyboard)
• SfY is based on core word data, so the words are organized in a way that makes sense in terms of which words are used more often. 
• The words stay in the same place.  This is a big one.  Whether you're using the app as a 20-word device or a 10,000 word device, the word "eat" will always be in the same exact location on the screen. This allows for motor planning memory in a way that I haven't seen any other apps attempt. (Maya already knows that alligator is on the top left of the screen with the animals, and it will never move from that spot.) 
• It's super quick to program.  Adding buttons, opening & closing buttons, etc, each only take a few seconds.
• You can't get lost.  In only takes 2 taps to say any word (and you can actually change that to make the first screen 1 tap words, for a beginner).  If you're in a secondary screen the blue "home" key is always in the same spot, and returns you to the main screen.   

I figured that it would be easier to understand what I'm talking about if you could see it, so here you go:  (also, eesh.  I've never tried to videotape myself before, so my head's cut off a bit.  And the iPad has a glare here and there.  I tried.)




Yesterday morning, right after I downloaded SfY, Maya saw me toying with the iPad and came over to see what I was doing.  After about thirty seconds I told Dave "get up and get the video camera!" because it was really neat to see how enthusiastically she responded to it.

Here's that video.  Look at how excited she is.  And notice how quickly she gets the hang of it:



So, the downside?  I don't see much.  No app (or device) is one-size-fits-all, so Speak for Yourself wouldn't work for everyone.  Our biggest challenge will be the fine motor component, being able to isolate a finger and touch only one button one time (this would be a challenge with any device or app).  I'm hoping that SfY will be motivating enough that it will actually build in some nice OT practice for us :)

Now comes the biggest variable---Maya.  We've got the perfect technology, and it's time to get her on board.  I'll be meeting with her teacher later this week to give her a demo, and then we'll start using it full time.  If anyone has any great getting-your-kid-started-on-their device advice, feel free to send it my way.

She was a little overexcited.  Hee hee.

I expect that I'm going to share a lot more about SfY and the progress that we make with it.  I can't wait :)



Here's that demo video that got my attention.

Here is Speak for Yourself in the iTunes store.  It's kind of expensive but, compared to other communication apps, I think it's well worth it.  I'm happy to answer questions if you have them.  You can also reach the creators of the app here.
  
 

I'm her voice. But what if I'm not there?

I'm used to talking for Maya. 

When she was younger, I would explain her thoughts . . . That noise means that she's hungry, She's looking in that direction because she wants the play doh on that bookcase.  When she's at the playground, I translate for the other kids . . . She said that she'd like to hold the shovel, She stopped because she can't climb the stairs without help.  Now that she's making more sounds, she tries to speak for herself, but it's unclear, so I still help out be re-stating . . . She said her favorite animal is the alligator, She said that her name is Maya.

But what if we got separated?  What if she ended up in a crowded place, alone?

She's little enough to still be confined in a stroller or shopping cart most of the time that we're out & about, but that will change.  Someday, sooner than I expect, she'll be walking through stores with me.  If we become separated, if she gets lost, she can't ask for help. 

She can't ask for help. 

When I think about that, it makes my heart race a little.

She needs to be able to communicate in an emergency.  She has to be able to say "I'm Maya.  I can't talk, but I understand you.  Please call my mom & dad at xxx-xxx-xxxx."  Since she won't be able to say that with her mouth for quite some time, we're getting her a bracelet that will say it for her.

If you have a nonverbal child, you might want to think about picking up a medical alert item (bracelet, necklace, dog tag, zipper pull, shoe attachment, etc) that has your child's information and emergency phone numbers.  I ordered Maya's this morning.  I'm anticipating that it will be a struggle to get her used to having a bracelet on, but it will be worth it for the mega peace of mind that it brings.


By the way, I didn't come up with this idea on my own.  It came from a book, one that I recommend to all parents of kids with special needs---or, to anyone who is a fan of Maya's and wants to hear more about what it's like to be the parent of a child who can't talk.  The book is called Schuyler's Monster, by Robert Rummel-Hudson.  I've never recommended a book on the blog before, but I recommend this one.  I'm not an overly complimentary person, and I'm a picky reader, so you can trust me when I say that the book is great (as is his blog, here).  Really great.  After I read it, Dave read it.  Then my mother, mother-in-law, and sister all read it.  If you have a nonverbal child, you'll be nodding along, and if you don't, then you'll come away with a clearer understanding of some of our concerns, hopes, and struggles.  Add it to your to-read list (or go get it right now for your Nook or Kindle).

 

Talking in '12

Happy New Year :)

I've done some reflecting back, and some looking ahead, and here's what I came up with:

2011 was the year of the walking.  I'd like 2012 to be the year of the talking. 

Talking progress, that is . . . I'm not expecting her to start speaking intelligibly.  But it sure would be nice if she got some more words, even if I'm the only one who understands them.  I'd like her to use her voice more, to give her tongue a workout and build those muscles. 

Weirdly, it's as if Maya can read my mind . . . suddenly, she's "talking" a lot.  (If you're a FB fan, you may have heard the video that I put up of her jabbering away in her crib.)  For the past 3 days, she's been a chatterbox.  It's amazing. 

From the beginning, she's been a silent quiet girl.  At the end of our first ever appointment with our first ever speech therapist, when Maya was about 10 months old, the therapist turned to me at the end of the session and asked something like "Is she typically this quiet?" and I said "Oh, yeah.  She doesn't really make noise.  Unless she's laughing.  Or crying."  That question haunted me.  I hadn't even put 2 + 2 together that she should be babbling.  I knew that words would come late, but I hadn't recognized the absence of the meaningless baby babble.

Now, we've got babble.  And word approximations.  Some old ("Ah!" for alligator has been around for a while now) and some brand new.  Like her name. 

That's right, people, she's (basically) saying Maya.

This was shot this afternoon.  Make sure your volume is on, and you'll get to hear: babbling, "me", "alligator", "Maya", "bad", and some jibberish.  It's all amazing.  She's finding her voice.


A hint: if you see a black box, click it. It should play.  If it doesn't, double click the "YouTube" box in the lower right corner and watch the video there.
She's getting noisy.  I've waited years for noisy.