Thursday, May 31, 2012

Contest winner!

Swinging by for a very quick post.  I just ran our comments through the random number generator at random.org and here are the results:


True Random Number Generator


5

Elizabeth, you are comment #5----congratulations!  I hope that you enjoy your 50% off of any customized shirt in the shop, and that you son loves his new shirt as much as Maya loves hers :)

In the event that I do not hear from Elizabeth within 24 hours I will select a new winner tomorrow.

Sunday, May 27, 2012

A Giveaway for Maya's Birthday!

Today was Maya's birthday party!  On Wednesday she'll be 4 years old.  She had a great time at the party and was totally exhausted by the time everyone left.  More party pictures will come some other day, but check out this cute one (she's got an animal cracker in her mouth):


She's just so adorable, I can't stand it.

Check out her birthday shirt!  It's a little blurry in that picture, but it says her name, has a big 4, and (of course) an alligator.  She loves it.

I found the shirt on Etsy, and once I received it (and thought the quality was great) I emailed the shop owner, Jill,  to see if she was interested in giving away a discount to one lucky blog reader.  She happily agreed to give away 50% off any one personalized shirt in her store, lil sha-bebe. 

Fine print: I paid full price for Maya's shirt.  I am not getting anything in return for this giveaway.  I just liked her shirt and thought it was worth a shot to ask about getting a discount to give away to one of you folks.

I took 2 closer-up pictures, but I took them after the party, so ignore the spots:




Jill's store has over 200 shirts listed---I can basically guarantee that if you spend some time browsing over there you'll see something adorable, either for your child or to give as a gift to some other lucky little one.

Here are the details:

Prize: 50% off any one personalized shirt from this Etsy store

Giveaway Details: Entries start tonight and will end Thursday at 3pm (NYC time).  Winning comment number will be chosen using random.org, and if I don't hear from the winner after 24 hours I will pick a new winner.

Entry Details:
  • You enter this giveaway by commenting on this blog post (not on the blog's Facebook page).
  • You can enter up to 6 times, and each entry must be a separate entry.  If you put them all in one entry, it's only going to count once.
  • It's generally best (but not necessary) if your entries include your email address.  If they don't, I won't be able to contact you if you win, and if you miss your 24-hour winner window you'll be out of luck. (So if your email address isn't there, be sure to check the blog on Thursday night, 5/31!)

How to Enter:
1. Leave a comment on this post.  (Any comment will do)
2. Like us on Facebook, and leave a comment that says "I like you on Facebook!" (if you already like us on Facebook just leave a comment saying so.)
3. Follow us on Twitter and leave a comment that says "I follow you on Twitter!" (if you already follow us on Twitter just leave a comment saying so.)
4. Go check out Jill's etsy store and leave a comment letting me know which shirt catches your eye.
5. Share the link to this blog post on Facebook and leave a comment letting me know that you did.
6. Tweet the link to this blog post and leave a comment letting me know that you did.

 
Good luck!

Thursday, May 24, 2012

Do you see what Maya sees? (We didn't.)

Maya sees things that we (meaning, me, most likely you, and probably most people) don't see.  While I've kind of suspected this for a while, it wasn't until yesterday afternoon that Dave & I were kind of blown away by it.

I'll get to that in a minute.

Maya has always been a watcher.  I suppose it's in her genes, as it's my nature to be a watcher, too.  I think that her natural disposition to be an observer was heightened by her mobility difficulties, although I can't say that for sure.  When she was 1, or even 2, she was content to find a nice place to sit at the playground, have a seat, and watch everyone.  Her peers would run and climb and slide, and Maya would clap and laugh and smile.  Don't get me wrong, we would try to motivate her to climb and play, and sometimes it worked, but she's always been happy to just hang out and observe.

This watching-ness carried over to books, as well.  When we read to her we would point out obscure pictures in the background of books---a cloud in the sky, a bird sitting on a tree branch, etc.  As time went by, we started asking her to hunt for things, I-Spy style.  She loved it.  Eventually she would point to things and make excited noises---a clear "Hey! A boat! See the boat?"  and so, I think we unwittingly were helping to train her eyes.

And then came the icing on the cake-using pictures to communicate.  If immobility encouraged her observations in the first 2 years of her life, nonverbalness took it to a whole different level in the most recent 2 years.  When we started using picture cards to communicate, she learned the power of pictures---they could mean words!  When she pointed at one, we knew what she was thinking!  Amazing!  And so she paid close attention to the images around her.

Sometimes exceptionally close attention.  Like yesterday.

Yesterday a Fisher Price catalog arrived in the mail.  Maya demanded it, since she loves to flip through and look at the pictures of the toys (well, who doesn't?).  Dave sat with her on the couch, and I listened to them talking from across the room.    They were looking at this page: 


(The pen on the side is included for scale purposes.)

Dave: Maya, what animals do you see?
Maya: Ah!!! (Alligator!)

(alligators are her favorite animals)

Dave: No, silly.  What animal do you see on this page?
Maya: Ah! Ah! (Alligator! Alligator!)
Dave: Where is the alligator?

(Pause.  Maya points.)

Dave: You've got to be kidding me.


So I ask, when you looked at this page, did you see the alligator?  Because Maya saw in within seconds.  Here's a closer look:



I'll point you towards the general area:


And zoom in closer:


See it?  Now go back and look at the first picture again, with the whole page.  See how small the alligator is?  Craziness.

This trick is actually serving her unbelievably well.  I'm certain it's the reason that she can learn new words on the talker rapidly---she's used to scanning intently and focusing on pictures.  We're not limited to apps or devices that only hold large pictures, because she does fine with small ones (this catalog is supporting evidence).  Maybe someday it will translate into some helpful literacy skills, too.  Who knows.  For now, it's a pretty neat little game.  If only they made "Where's Waldo" books with alligators---she would kick butt.

 

Sunday, May 20, 2012

Interactive Reading with the Talker

Last week I began gathering some information on how to use the talker most effectively when I'm speaking to Maya.  If you're not a speech/AAC (augmentative and alternative communication) person, this might sound strange, since Maya understands me perfectly without involving the talker at all . . . but think of it as learning a foreign language.  If you can only share your thoughts in German, but everyone is speaking to you in English, it's going to take longer to learn all of the German that you need to communicate.  If your friends and family began to mix some German into their conversations with you, that additional immersion would help you to learn more rapidly. 

So I needed to start translating myself into German. 

With the assistance of some research papers, some websites, and some super helpful SLPs (speech-language pathologists) who don't mind my constant trickle of questions (in person or via email) I was able to determine some best practices and started using the talker to model my speech on Friday (2 days ago). 

The reason that I didn't start modeling my speech with the talker earlier than now is because I thought that it might be overwhelming to open all of the vocabulary that I would need.  So, in prior months when talking to Maya I might say "You're having a waffle with syrup," only hitting the buttons for the underlined words. Now that she's using the babble function regularly to open up all of the words, I wasn't worried about overwhelming her by opening some more of the basic verbs, prepositions, articles, etc. So now I would say "You're having a waffle with syrup" and use the talker for the entire second half of the sentence (I say the whole sentence with my voice as well).

I'm not requiring her to say things to me perfectly. I'm just showing her what it would look like if I keyed my spoken language.

Friday night I spent a good deal of time brainstorming games and activities that we could incorporate the talker into to offer more practice with combining words, using articles, etc.  I remembered seeing a lot of SLPs do reading activities during speech therapy.  I'm sure that there's a name (that I don't know) for this type of activity----but basically they hold up a book and read "I ride the  . . . " and then the child says "bus" (or buh, or whatever approximation they can say).  I thought that this same interactive-reading strategy would be great for us to try with the talker, so when Maya brought me a book to read on Saturday I decided to try it out.

This video was taken this afternoon, 24 hours after the first time I tried reading the book with Maya and the talker.  It's pretty amazing, if I do say so myself.





A few things:

1. Did you notice that she turned the babble function on right before she said grocery store?  That's because I (erroneously) didn't have the buy catergory, which contains the button for grocery store, unlocked on the main screen.  So, Maya wanted to say grocery store, looked where buy should have been (she actually reaches out to touch the empty spot), realized it was missing, and decided to turn babble on so that she could access all of the hidden words.  Smart girl.

2. Once babble is turned on, it stays on the whole time.  How great is she at navigating through the (kind of overwhelming) full pages of words?! 

2. After Maya & I made the phrase "go to the grocery store" (around 1:42) I usually tap the top strip so that the talker will read the whole phrase, but I forgot to this time.  (She's seen me using the top sentence strip for about 3 days now, and she is now sometimes tapping it herself.  It's so impressive to see her observe and learn from the modeling.)

3. When she said "more book please"  at the end, I felt the way that a gymnastics coach must feel when their gymnast manages to stick the landing on a new, difficult routine for the first time.  That's a completely unprompted, spontaneous 3-word combination.  We're about 2 days into my attempts at more conscious immersion/modeling with the talker, and we're getting a lot of "milk please" or "book please" but the 3-word-combo is brand new (and awesome).


This was a pretty great way to end the day.  I'm looking forward to trying the same strategy out with other books----Maya clearly loves being able to chime in with the book, and it's pretty fun for me, too. 


Note: As I always say, I am not an SLP or a trained AT/AAC specialist.  I'm just a parent who researches her butt off and is trying to do what seems to make the most sense.  If you're a professional who watched the video and has pointers, other ideas, or possible corrections, please comment below or send me an email---I'm always looking to learn.  Thanks!

    

Tuesday, May 15, 2012

Stop telling me that "things are going to be so hard"

I am pregnant with my second baby, due in October.  Here are some things that I know about having a second baby, not from experience, but because I am a logical, semi-intelligent person:  It will be tiring, because new babies are tiring and having an older child who runs on a schedule will make sleeping while the baby sleeps less of a realistic possbility.  It will be demanding, because both children will need attention and I will be newly learning how to juggle their needs.  It will be sometimes overwhelming, in the way that any major life change is.  You know what else I know about having a second baby?  It’s not rocket science.  And we will handle the transition just fine.

Why am I stating these fairly obvious truths?  Because I have started to encounter an odd group of people who seem intent on trying to bring me down.   The conversations generally go like this: they offer their congratulations on the pregnancy, I thank them, and then they start catastrophizing what it’s like to bring home a second baby*.  Then I smile and brush it off, instead of saying all of the things that I’d really like to say.  So now I’ll say them here.  Below, some of the gems that I’ve heard, and my inner responses.  Stay tuned for the big bitter finale.

*Important note: I’m not talking about friends/family who will crack a joke about the chaos of more than one kid, or who will shout over their wrestling children, “I hope you’re ready for this!” with a wry smile.  That’s funny and sarcastic and tongue in cheek and harmless.  I’m talking about the seriously negative, not-at-all-joking, joy-sucking people who deliver the gems below straight faced and in a grave voice.

1. You think one kid was hard---you have no idea.  Just wait until you have two. Of course two kids are more challenging that one kid, that’s why we waited this long to have another.  Does anyone really think that adding a new baby to the family would somehow be less work than just having one?

2. I hope you have earplugs, because they will fight constantly.  Of course kids fight. I have a sister of my own, and nieces and nephews, and ears, and common sense.  Will they fight constantly?  Maybe, maybe not.  Who cares?

3. The beginning is impossible—the baby cries, the older one wants attention---it was the worst time of my life.  I’m sooooooo glad to be done with that.  Uh  . . . congratulations?  I’m not sure how anyone could even respond to this.  What I’d like to say is “if having a second baby and an older kid was the ‘worst time in your life’ then aren’t you lucky” . . .but I feel like that would be poorly received.


And you know what I’d really like to say? 


I’d like to widen my eyes, and look over at Maya, and say to them “Did you really just imply that I have it easy with my ‘only one’ kid?  That my mothering experience has been simple compared to yours, because you have two (perfectly healthy) kids and I have ‘only one’?  Are you that unaware?”

And I could keep going . . . here are a few factoids that illustrate how much easier things are for me, since I have “only one.”

-We have seen more specialists that I can keep track of, literally.  When I get doctors’ bills I squint at the practitioner’s name and think “Hmm, which one are you?”  We switched pediatricians this week (insurance related) and I couldn’t send Maya’s medical file to the new office (as one is supposed to do, per their policy, before scheduling an appointment) because it’s not a file, it’s a full binder, way too large to be faxable. 

-We have had (and continue to have) hours and hours and hours of therapy.  During the first year that I left my job to stay home with Maya we had 3-4 appointments per day.  Most days we barely had time to leave the apartment, because we were in therapy, or she was napping, or I was trying to feed her.

-We had years of feeding therapy and practice (practice meant that every snack and meal was work and exercise) before she was able to move to solid food, and she still can’t completely feed herself.  So we still feed her to some degree at every meal.

-We’re still changing diapers.

-Maya has been playing with her princess dolls all week.  Since I’d like to talk to her about them, I spent half an hour making buttons for her talker so that she would be able to say Belle, Tiana, etc.  I have to make buttonson an iPad, then teach her where to find them, then practice using the new buttons with her, in order to talk to my kid.

-She didn’t walk until she was nearly three, and even now walks very unsteadily.  She tires easily.  She can’t walk up and down stairs (a few stairs at the playground, yes, a flight of stairs, not without a lot of help).  She goes completely limp when overwhelmed.  All of this means that being Maya’s parent is a very physically demanding job.


I don’t need to keep going, right?  That’s enough to get the idea.

So when someone tries to rain on my parade by telling me how inconceivably hard life will be when I add a second, it’s hard not to laugh at them.  The truth, as I see it, is that these parade-raining types, the ones who see so much of life’s negative side and love to point it out to a captive audience, they would find a day living my current life to be “inconceivably hard”. 

And you know what?  It’s not at all.  It’s just life.  It has its challenges and it has its joys---just like every person's life has challenges and joys.  I would never try to tell someone that my life is harder than theirs is . . . because, well, first, that’s the weirdest competition ever . . . and second, I’m smart enough to know that no one can ever really understand someone else’s baggage without trying to shoulder it themselves.  Who am I to claim that mine is heavier than yours?

At the same time, if your kids are able to climb out of their own beds this morning, get dressed, eat breakfast independently, walk and run and wrestle, speak intelligibly to you, yell at each other, climb in the kitchen to get a forbidden snack, throw things, play video games, get into trouble, use the bathroom, whine at you, whatever . . .  well, to me that sounds like a damn good day.

So I’ll concede that two kids will be more complicated than one, if you would kindly stop telling me how easy I’ve got it now, having “only one.”  Because, really, you have no idea.


Saturday, May 12, 2012

It's a . . . .

This past Monday was one of the best days that I've had in . . . well, in a long time.  Dave and I headed off to the doctors' offices for a big morning of appointments: our anatomy scan (the big ultrasound), a perinatologist appointment, and an obstetrician appointment.  My excitement over seeing the baby was tempered by my anxiety that this is the time when they check every little part of the baby and make sure things look a-ok.  And everything looked perfect :)  Then came the bonus: we got to find out the sex of the baby!

With Maya we had decided not to find out, we totally wanted to be surprised.  You know what I've learned, though?  Birth can be surprising for a ton reasons.  Maya was taken away for some suctioning right after birth, and I worried whether she was ok.  I worried about my own body and was busy talking with the medical people about how I was doing.  I wondered about her size and what she looked like and when to call our parents.  There was so much going on that the whole "it's a girl" moment was really nice, but just one of the many celebrations that day.  So this time I wanted to really celebrate the "it's a ________" moment separately (and thankfully Dave was on board).

And then I decided (with the creative input of a few friends) to make these fun cupcakes to spring the news on our family:
Pink cream inside means girl, blue cream inside means boy

And now that the cupcakes have been eaten (well, mostly eaten, I'm having another one in a few minutes) it's time for the blog announcement . . .

It's A  . . .



well, here, I'll let Maya tell you first.




That's right . . . it's a BOY!


We're super excited :)



 

Wednesday, May 9, 2012

This is what 4 months of using AAC looks like*

*The more-precise-but-too-long-to-fit title would actually be: "This is what 4 months of using an appropriate (as in, a good fit for the child and family that are using it) AAC 'device' (or, in our case, an iPad with a killer app, great case, and perfect keyguard) looks like (for Maya, as obviously other kids/adults could progress more or less quickly).  PS. Also, the Word Book/picture card stuff that we did in the fall likely prepped her for success with this, but it wasn't included in the 4 month time frame."  See?  Way too long for a title.

Last night I uploaded a video (which you'll see at the bottom of this post) right before bed.  In the video, Maya is using her talker and I'm speaking to her.  Since editing this video was the last thing that I did before climbing into bed last night, it was at the forefront of my mind as I laid in the dark.  I started thinking back to the fall, when Maya was getting ready for preschool and I was searching, searching for some system that would work for communication.  I thought about the boards that we tried, the Word Book, the decision to move aggressively towards some sort of technological AAC, meetings with reps from the device companies, my big app search . . . it seems like a lifetime ago. 

It's getting hard to remember what it was like when she couldn't use the talker. 


It's getting hard to remember what it was like when she didn't have a voice.


She doesn't use it constantly yet, as she knows that we can understand a lot without using it, and we don't want to force her hand, but when I don't understand her (which you'll see in the video) I can say "tell me with the talker" and she will.  That's amazing.

So I sat down this morning to start writing this post and I decided to click back through the blog and see how long we've been working with Speak for Yourself (SfY) and, as it turns out, it's our 4 month anniversay.  On January 9th I put up a post saying that I thought we had found the solution.  I was right.

I started to watch some videos from the beginning of our time with the app, and I'm blown away by the progress.  I'm so happy that I made videos, because this is the type of progress that you don't always notice unless you take a step back and look.  So, take a step back and look with me . . .

This was the first day that she used SfY.  Notice how few words are open, and how much hand-over-hand assistance she needed:




5 days later, she was able to independently say a few things.  There are a few more words open, but not many:




Progress was slow, but steady.  Our biggest issue, for which we tried a few solutions, was her tendency to accidentally hit buttons with the heel of her hand.  Three weeks ago, our keyguard arrived and changed everything, instantly.  Here's a video from 2.5 weeks ago, her first attempt with the keyguard on.  You can see that more word buttons have been opened over the previous 3 months:

 


And that brings us to yesterday.  If you follow us on Facebook, you've seen me mention that Maya has learned how to turn the babble function of SfY on (which opens every word and gives her a suddenly very large vocabulary).  She loves being able to say all of the words, despite the fact that she doesn't know what many of them mean.  Oddly, one of her favorites is "illegal," and it's hilariously disconcerting when I'm busy in the kitchen and hear "illegal.  illegal.  fasten your seatbelt.  underwear. illegal."

At first I attemped to turn babble off, assuming that having all words lit up would overwhelm her  . . . honestly, it overwhelmed me, and I struggled to find things that had come easily to me with the babble off.  Maya was insistent, however, that the words stay lit up (you'll see that in the video, too).  This was taken yesterday after school, and she's a little tired, but you can see that she'll turn the babble on and still be able to communicate effectively with the full screen lit. 




It's amazing.  This is 4 months of progress.  (And honestly, if the keyguard had been available sooner I think this progress would have been greatly accelerated.) 

It's hard for me to remember 4 months and one week ago, when I was still searching and frustrated, so sure that Maya would latch on to a system if only I could find the right one.  I can't imagine where she'll be 4 months from now, and I can't wait to see.

Friday, May 4, 2012

If you're looking for communication solutions . . .

 . . . well, now is a good time to be looking.  There are a few things happening right now that I would be really enthused about (if we didn't already own the apps that I'm about to discuss).  Here's some stuff that you might be interested in:

1. Speak for Yourself Lite*:  Speak for Yourself is the communication app that we use with Maya, which we love (and mention frequently).  Yesterday the Speak for Yourself team released a lite version of the app---which is free!  It's a great opportunity to try the app out and see if it could work for your child (or adults with communication challenges, too).  This is the link to the iTunes page for the lite version, and this is a video overview of the features of the lite version (and the rationale behind them).

2. Speak for Yourself sale*:  If you like the lite version, May is a good month to buy the full version of Speak for Yourself.  Until 5/31 it's on sale for $189.99 (instead of $299.99).

3. Smarty Ears Custom Boards sale*:  Remember the calendar center and schedule that I posted last week?  Those word cards were created by printing Smarty Symbols via their Custom Boards app.  This app allows you to create boards, signs, etc with the Smarty Symbols (the same symbol language used in Speak for Yourself).  It's handy to have if you're using the Speak for Yourself app, because you can create labels, etc that support the immersion in that symbol language.  It's currently half-price ($19.99 instead of $39.99), but only until 5/9


In other news, I've mustered all of my spare determination and waded into the world of Pinterest.  A lot of our stuff has already been pinned by other lovely folks, but I thought it would make sense to create a pinboard that has all of our DIY ideas in one spot.  You can see that here.  I'll be creating other boards, too, the first will likely be of DIY projects that I want to try.  (If you see something that you think I might be interested in, please send it my way via our facebook page or email-thanks!)


*Disclaimer: I don't work for Speak for Yourself or Smarty Ears.  I just like their stuff, and we use it because it's good.

Wednesday, May 2, 2012

Rites of Passage-big and small, painful and exciting (and painful)

Yesterday morning I got a call from the school nurse.  The parents who have school-age kids likely clenched a little bit reading that sentence, as a call from the school nurse is never a great sign.

I heard her say "Hi, this is the nurse from Maya's . . . " and then my mom-hearing shifted as my ears found, and locked on, a noise in the background.  Maya was screaming, hysterical.  This is where my stomach dropped.

I heard her say that Maya had an accident at school, that she had fallen, and visions of broken bones flashed through my head.  I was simultaneous relived and sad-for-Maya when the nurse said that she had split her chin open a bit, that it was bleeding and kind of deep and I needed to come in.  I spun around the apartment, kind of frantically gathering snacks, drinks, favorite toys, trying to figure out what I would need to keep us happy (well, as happy as possible) at the hospital.  Once I was in the car I started making phone calls: Dave, the pediatrician, etc.  We decided to go straight to the emergency room (our ped will do simple stitches, but I didn't want to get there and find out that her cut was out of his league.  In retrospect, this was absolutely the right decision, since we ended up needing some major hospital muscle involved.)

Upon reaching the school I was reassured by Maya's happy face.  She was quite content watching cartoons and having lunch with the nurse.  Her teeth and mouth were fine (sigh of relief) and her chin was bandaged.  I learned that she had been walking to the gym at school and just tripped, forgetting to break her fall with her hands and going right down on her chin.  Poor thing.  (Funnily enough, my first set of stitches were in the exact same place, when I was 18 months old or so.  And yes, I said first set.  I've been stitched many-a-time.) 

We got to the ER and were seen pretty quickly.  A numbing gel work its magic as we watched cartoons, and then she got all wrapped up for the numbing shots and stitching (the cut was too wide for glue).  She screamed and screamed and wrestled like an alligator, actually working her way out of the papoose at one point and needing to be re-wrapped.  I sang and told stories and was in charge of her legs, laying across them as I held her hands.  When I initially laid across them the doctor thought I was going to pass out, but I told her that my weakness was my lack of upper body strength, not a queasiness.  I watched the stitches go in (4 of them), learned how to apply the dressing, and we were on our way.  Poor Maya was beyond exhausted.

Here she is this morning, my tough girl:

That's not saran wrap on her chin, it's a plastic adhesive dressing over the gauze and ointment and stitches.

The internal parts of the stitches will dissolve over the next week, and I'll pull any remaining knots next week.  Good times. 

And while yesterday brought Maya through the First Stitches rite-of-passage, I marked a milestone of my own on Monday, albeit a less painful one.  I've registered to attend the ISAAC 2012 conference in July/August, booked my flights and hotel room and everything.  Milestones that will be observed: first AAC conference (actually, first professional meeting that's not related to my actual profession, teaching), first time away from Maya, first time flying while pregnant (eek).  This international conference hasn't been in the US in 12 years, so I'm seizing the opportunity, although I'll likely be kind of big and waddly by that point.  I think that there will be an amazing amount to learn, and I'm really excited to soak up as much as possible.  I'm kind of getting  passionate about AAC related stuff, and every time that I see Maya using different tools and strategies to communicate more effectively, I get more excited and enthusiastic.  I want to learn as much as I can.