The week that nightmares are made of

Last night I had nightmares.  Nightmare(s)-plural.  All of them directly correlate to stressful events on the horizon (well, honestly, one might have been related to the Dexter episode that I watched right before going to bed). But mostly they are due to the week ahead.

The week's itinerary

Today: Most of the day was spent trying to clean and restore order, which is apparently unmaintainable when we have a week of vacation.  This afternoon Maya got two fingers caught in the elevator door (to be fair, this wasn't a planned event, but it caused an hour of chaos, nonetheless).  Then came the return of our EI speech therapist (who we will be seeing once a week---very exciting---and I'll have to write about the re-balancing sometime soon). 

Tomorrow: More organizing (yeah, we're that messy), cleaning out old toys & clothes, donation trip to Goodwill, then draggin the Christmas stuff out of storage.  Also, trying to plan this year's holiday card.  (Yeesh--I wish last year's hadn't been so good.  I feel like the bar is set kind of high.)  Support group meeting in the evening (had to skip last time, can't do it again).

Wednesday: Dave &Maya are playing hooky so that we can go to Yale to meet with a new geneticist.  All new appointments are unsettling, but new geneticists are the worst.  At this point, the thought of them finding a diagnosis is more scary to me than the not knowing.  This trip has the potential to link us to a interesting team . . . but I'm getting ahead of myself.  We'll have to wait and see.  But I'm feeling nervous.  (Also, bailed on book club, because it's just not going to happen after we arrive back, physically and emotionall wiped out, from CT)

Thursday:  I start my new job.  In the future, most of my working hours will be logged from home, but I need to be in the office a bit this week and next week to train on the system I'll be using.  (It's academic work for a grad school, drawing on my teaching experience.)  I haven't started a new job in 8 years.  And I'm not really a people person.  So, a little nervous.  (Also, bailed on "Parent's Night Out" with the folks from Maya's class this evening, because I will be beyond frazzled.)

Friday: Maya's asstistive tech re-evaluation at school.  Ugh.  She's had the TechSpeak at school for a month, and is doing well with it.  Now the DOE people will decide whether she should stick with that, or get a Dynvaox Maestro (which seems to be their high tech device of choice).  I don't even know what I want to happen here . . .

• if they want her to stick with the low tech device, she will outgrow it sometime soon. She already has to supplement heavily with the Word Book, because the Tech Speak just can't hold all of her words. However, at least it's familiar to her right now.
• if they give her a Maestro, then she loses what she's currently using (and is used to).  Also, now that I've met with the Dynavox and PRC people, I want to trial each one of their devices and figure out which is the best fit for Maya.  What if they give her a Maestro and a month from now (when I get around to training and trialing) I can see that they Vantage Lite is a better fit?  We can't keep switching systems on her, it's not fair.  (sigh)

So, that's the week.

In other, more interesting, news:

• Last week's Thanksgiving post quickly becamse my fastest shared post ever (surpassing Amsterdam International with over 470 Facebook shares in less than a week).  It also generated the most page views that I've ever had in a day (2,051).  Pretty cool.
• If you missed it over the weekend, check out the post from Sunday, in which you can see how Maya uses the Word Book.  If you're trying something similar at home, make sure to read the comments---there are a few good ideas there.  (And if you have any ideas to share, don't be shy.)
• Go check out the 2011 Holiday Toy Guide for Kids with Special Needs, put together by Ellen over at Love That Max.  It's full of great ideas!  Plus, if you scroll about halfway down, you'll see a familiar face!  Hint: It's Maya :)

* I had to write this twice, because the internet ate it the first time around.  This draft is much more choppy and fragment filled, but it kind of matches my mental state anyway, so it's staying as is. 

Using the communication book to, you know, communicate

Thanksgiving break brought opportunities to see lots of people--my former (Dave's current) co-workers, my family, Dave's family, neighbors.  Each visit was different, but contained one similar exchange:  people are intrigued by Maya's Word Book.  They want to check it out.  Other kids love to pull the words and hear the velcro crinkle and crackle.  Adults want to know who made it, how we use it, what Maya does with it.  It's certainly a conversation piece.

However, seeing as many of these lovely people also read this blog (thanks, guys!) it also made me realize that I haven't really gotten around to explaining how Maya is currently using the Word Book.  This is probably because using the Woed Book, much like using any communication system, is a work in progress. It evolves, slowly but concretely, when I add new words or change the format.  But let me show-and-tell you what we've got going on right now.

In the beginning:  If you're new around here and thinking "Word Book? What's a Word Book?" go check this out: Introducing the Word Book.

Where we are now:
1.  Maya loves the book.  LOVES.  She wants it with her the moment she wakes up.  She won't go to sleep if it's not in the crib with her.  She holds it in the car, on the bus, etc.  (This means that the only way I can replace/add words is to steal it after she's fallen asleep and then replace it before I go to bed.  Kind of silly, but adorable.)

2.  She will tap out "I want"-"item"-"please" sentences.  (Although recently she's been getting confused and just tapping "I want"-"please" and then I have to say "You want what, Maya?" and she'll tap "alligator" or whatever and smile at me.  It's like her hands want to get through the sentence ASAP, and she's skipping the most important part.  We're working on it.)

This video shows a tired Maya, just home from school.  I know that she wants milk, but I'm trying to wait her out and make her ask for it . . . and then she does.  You can see how she "asks for" the book and then uses it to make a full sentence request.



3.  When we're going somewhere or doing an activity, I try to pull the words that we'll need and put them on the front of the binder.  (Ex--if we're going to play with play-doh I would put the colors on the front of the book)  By now, Maya knows where most of the words are in her book, and I can ask her to find them and put them on the cover herself.

This video shows her flip through the book to find "alligator", her favorite animal.  She then points to some animals to answer my questions.  Stay tuned to the end, when you see the type of ridiculous mistake that I make when I work on the book too late at night.



You might have also noticed that she put the leopard back in the appropriate spot---she's remembering more and more where the tiles are supposed to go.  This reinforces why it's beneficial to try to keep words in the same format (like a Prentke Romich device does, for example)---I'm not able to do that with the word book.  When we take words out, they just go anywhere on the cover (aside from the tiles along the side and the bottom that are stationary).

Regarding PECS
I sometimes call this a PECs book, because when I say "Word Book" no one knows what I mean, but if I say PECs book people can visualize what I'm talking about.  PECS stands for "Picture Exchange Communication System" and is a whole system (with 6 phases) of communication.  We started trying PECS with Maya about a year ago, and saw that it wasn't really a fit for us. For those familiar with PECS & curious why I'm not working the system, here's why:

• PECS fundamental idea is teaching kids to pick up a PEC (one of the picture tiles) and hand it over to a waiting person.  It's meant to teach kids to initiate communication.  Maya is constantly trying to initiate communication (she has high communicative intent), so I wasn't concerned about motivating her to want to engage with us.
• Having her pick up the PECs a year ago was a bad idea---once she had one in her hand, she was distracted by it and would play with it like a toy.  She also lacked the hand strength to easily pull them off the velcro strips.
• We're moving towards a touch screen.  This is a big one for me.  In this digital age of iPad screens and touch-screen communication devices, I want her to learn that she taps the tile, she gets auditory feedback (I say the word she taps) and that's that.  She's been exposed to this on the iPad already, and clearly understands the idea (as you saw in the first video).  I don't want to teach her to start giving me word tiles when she's already learned to tap out thoughts.

So that's that.  I'm not saying that PECS is a bad system, I just can't see a reason why I should try to use it.  It doesn't make good sense to me in our situation.  If you're interested in learning more about PECS and its phases, check out this link.

Where we're going:

I have no idea.

Just kidding.  Kind of.

Well, she's got the I want-item-please thing down. She answers questions.  I need more verbs, and other sentence builders.  You might be able to help me, actually!  If you are a speech person, or have an older child who uses a communication device, I've got some questions:

-What comes next?  What's the clear next step after "I want" sentences?
-What are the most powerful sight words (2-3) that I could add to the book to facilitate longer sentences?  (And? To? Something else?)

As always, I'll take any advice you've got (and I'll share the good stuff, too)

We Are More Thankful Than You Are

(By "we" I mean parents of kids with special needs.  By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition.  And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful.  I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl.  Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down.  In taking something for granted, one accepts something as a given or true, often without showing appreciation.  While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.

• Will she get good grades?  Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history.  And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway). 
• Will he play sports?   Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane. 
• Will he be teased?  You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
• Will she get married?  Of course she'll have relationships and date and all that jazz.
• Will he go to a good college?  Will he stay on the path to college?  Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
• Will she make good friends or fall in with the wrong crowd?  Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids).  Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode. 

But then . . . over time . . . progress happens. 

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing.  Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap!  That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it."  A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself.  I didn't have to sit and feed her.  It was amazing. 

Walking down the hallway?  Eating a waffle?  These would, without a doubt, be things that my former self would have taken for granted from my typical child.   But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us.  When I first realized that Maya was learning to recognize letters, my entire world shifted.  If I were a typical parent, I might have thought:  Awesome---what a smart girl!  She's already learning letters.  Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought:  She will be able to read someday.  And then, not far behind:  If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her. 

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer. 

That difference brings with it a more profound level of thankfulness.  It just does.

2 years ago today, Maya had her brain MRI.  2 years ago tonight, we found out that her brain was normal.  2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool.  The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone.  It was a video, taken by the teacher.  Earlier in the day, her son had taken his first unassisted steps.  Ever.  Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps.  And while we were there, he did it again, with both of his parents excitedly looking on.  He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment.  That moment that takes them from "I hope that someday he'll walk" to "He walked."  From hoping that someday he would be walker-free to seeing that there's a good chance.  From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical.  For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small.  And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.
 

Every kid needs to romp in a big pile of leaves

This is Maya's first walking fall.  Free from the constraints of the stroller (sometimes) she's prone to picking up sticks, rocks, clumps of dirt . . . whatever catches her eye.  On Saturday morning Maya was walking in front of our building, stopping every other step to pick up a leaf.  She was a leaf hoarder---using one hand to smush a growing pile against her coat, using the other to grab new leaves from the ground.

And then we realized that she's never gotten to play in a big pile of leaves.

"Big pile of leaves" is a fall tradition in the suburbs.  It's possibly the most fun part of fall for kids, jumping and rolling, shuffling and kicking and throwing and tunneling through a freshly raked pile.  We called my parents in NJ, asking the rather ridiculous question, "Hey, do you guys have any leaves?"  My dad said that he'd make a big pile for Maya, we grabbed some stuff---and Parker--and headed out.

This is a very big pile of leaves. 

And I can touch them all?!

When Parker sees that Maya is holding leaves, he likes to go and pull them out of her hand.  She may have taught him this by shoving random things in his mouth and then laughing when he takes them and spits them on the ground :)

 Parker, you're takin' all my leaves!  Silly doggie.

Rearranging the pile.

 Doling out leaves to Grandma and her next door neighbor

 Parker likes soccer.  Who knew?

 That, my friends, is a happy girl.

I couldn't resist.

Parker!  Stop takin' my leaves!

*special thanks to Dave, who is letting me upload pictures despite the fact that he's in desperate need of a haircut.

Our favorite partners-in-crime:

This picture of Maya & Parker is so cute that a friend of mine wrote on my FB wall, "Hey, you should enter that picture into this photo contest!"  and I thought "Um, I don't want to be that vote-for-this-cute-picture-of-my-kid" person.

Then I saw the prize.  $1,000 to the photo that gets the most votes between today and Sunday. 

And I thought about the appointment that we have a Yale next week---meeting with a new geneticist---we have hopes that this might actually be the first step on the road to a diagnosis.  For real.  Of course, it's not covered by insurance.

And I thought about the communication device and/or apps that we're hoping to get.  A little photo prize money, well, it would be mighty nice. 

Voting starts today---you can go to this link to vote.  1 vote per person, per day. 

Thanks you. 

Maya hearts reptiles

Like any toddler, Maya can be fickle---her dragon obsession seems to have given way to a fanatical love for alligators (if you're a fan on Facebook, you may have seen this picture from yesterday---Maya ran to kiss an alligator painted on the wall at her school when I picked her up):

But dragon to alligator isn't that far of a leap, really.  I think that a dragon would be reptilian, you know, if it wasn't imaginary.

While at the zoo this past weekend, Maya's absolute favorite place to hang out was the Reptile House.  She ran around the dark hallways, looking into display tanks, yelping and pointing happily.  She even liked . . .  the snakes.  Now, in previous times, Maya has had a love/hate thing happening with snakes--even our snake.  She wanted to look in the cage, but not get too close.  She preferred if Dave or I was next to her while she peeked in.  But not on Saturday--she loved the snakes! 

So we decided to introduce her to our snake* and see what happened . . .

Whoa.

 This is incredible!

Mommy, do you see this snake?!

And a little video of the fun, complete with Maya making some nice speech sounds :)

*The snake is a friendly 11 year old ball python.  Her name is Ramona, after the Bob Dylan song, although she answers (or doesn't answer) to all words equally.  She came to me through an animal rescue 7 years ago, as she was a burn victim and I was trained in animal rehab.  I was right there the whole time, and I know what to keep an eye out for in terms of stress cues.  I don't recommend that people let any old toddler play with any old snake. 

Today, well, today was a good day . . .

Today has been a great day.

Maya & I were coughing all night long, so after I got her on the bus I went back to bed for 2 hours (yeah, I know, it's one of the major perks of unemployment).  When I re-awoke and sat down at the computer to get some stuff done I was alerted that the Parents Magazine Best Blog Award winners had been released . . .  and I was a winner :)  We are now officially the:

2011 Best Special Needs Blog, Readers' Choice

"Readers's Choice"---that means all of you kind folks.  So, thanks a million for voting and forcing encouraging others to vote, too.  You are the ones who share your favorite posts on Facebook/Twitter/email/etc, you're the ones who help the blog spread far and wide.  Many, many thanks.

(this is where someone should cue the music, before I launch into a full blown acceptance speech)

To sweeten the victory, I just realized that today is my 4 Year Blogoversary.  Exactly 4 years ago today, the blog started, with these three sentences:

"I have no idea what I'm doing. Do not come here with high expectations of wit or regular updating. We'll see what happens."

When all else fails, set low expectations, I guess.  Well done, Dana.

In other news, I got a job offer today (which I will be accepting) and it has nothing to do with special needs.  So that's a bit of a nice break.  A blog award, employment, and a blogoversary---talk about a great day!

Oh, and I won the lottery.

Seriously.

Well, I guess I won a lottery, not the lottery.  5 big ones! 

$5, and I'm not sharing it, either.

The lottery ticket was a gift from Dave--he thought I was on a roll today, so it was worth a shot---he also brought home a few other celebratory gifts:

Note the balloon---it originally said "Best Party Ever", but Dave crossed out "Party" and wrote "Blog"

I'm off to drink champagne, eat a giant chocolate chip cookie, and daydream about how to spend my lottery winnings :)

Thanks again, everyone.

 

 

 

Just let me have the now.

My mind protects me from the wounds of time.  The past and the future are treacherous ground for the  psyche of the special needs parent.  My mind whispers, “don’t try to remember, that was so long ago” and “slow down, no need to think about that just yet”  . . . keeping me from looking too far into the unknown of the future, or from thinking back too far and hitting the naiveté of my past. 

Oh, the blissful naiveté of my past.

When I stop and remember, the memories have the clarity of home movies . . . I see my former self, this girl-who-I-no-longer-am, pregnant and happy and picking out names for her perfect baby, and I know that she will lose her carefree spark.  I see her become a typical mom of a typical baby.  She thinks about the future and smiles.  She gleefully says things like “By spring she’ll be walking! Can you imagine that?!”   But I know that in a matter of months, she will no longer just gaze at her child with love, but with the burden of reexamination, searching for “normal” and “abnormal.”  Now, she laughs and plays on the floor with her baby, but soon “playtime” will become “therapeutic playtime”, filled with objectives and practice.  Soon, she will cry at night.  And during naptime.  And when it’s quiet and she’s alone and starts to think. 

She will scrutinize and worry.  She will struggle to learn to speak the new languages of medical jargon and advocacy.   She will not be the same, and not in the gradual way that people mature over the years, but in the radical way of a sudden, post-traumatic shift. 

She is the woman that I was before.  Watching her is like watching a dog at the pound that wags his tail and yips excitedly all the way to the doggie gas chamber.  It’s heartbreaking.


Don’t try to remember, that was so long ago.


The future is equally emotionally hazardous.  Advancing towards the future is driving through a thick fog in the middle of the night.  I won’t be able to see where our road is leading until the sun rises, and there’s simply no way to make it rise any faster.  I drive slowly, rolling through the fog and listening to music and try not to think about whether I’m heading towards a cave or a beach.  Honestly, I don’t even want to know where this road leads.   If the final destination turns out to be a beach, I’ll celebrate when I feel the sand between my toes.  I will think back over the years, about my (now unfounded) fears of the future, and I will sit in the sun and bask in the sweet relief of ending up at the beach.

And if my destination is a cave, well, I don’t need to know that yet.  From far away, a cave is dark and grey, a dank place that might house bears or other monsters.   Driving through a dark, foggy night towards a cave is the stuff of nightmares. 

But standing in front of a cave when the sun rises?  Well, there’s enough magic there to show you that caves are misunderstood.  With tide pools and rock formations and echoes, a cave reveals itself as something surprisingly beautiful, entrancing even, but misunderstood by the masses.  We’re already well-versed in beautiful, entrancing & misunderstood.

If I need to, someday, I will learn about the beauty of caves . . . and I’ll share them with anyone who will listen.   But for now, I choose not to look ahead.  I have no way of knowing where our path will lead, and I don’t want to guess.  I don’t want to think about our destination.


Slow down, no need to think about that just yet.


I’m living for the now.  Now is the delight of a normal day at the zoo.  Laughter and love, hugs and finger paint.  Now is a new favorite animal, an inside joke between my girl and her Daddy, sticky, chubby ice cream coated fingers.  Now brings the joy of new successes, the shrieks of “you did it!” the eyes that fill with tears when I see progress right in front of me.  Now is proud---the pride of any parent who loves their child and watches them gain independence, baby step by baby step.   

Now is savoring this exact age and stage and place and time.   Right-at-this-moment-now is unburdened.


Just give me the now, please.  Just let me have the now.
 

A zoo trip, and self-directed OT

Miss Maya had the day off today, so we packed ourselves up and headed to the zoo.  While she's always loved the zoo, it's funny to think back on how her favorite animals have shifted.   She delights in holding her nose near the penguins and sea lions to tell me that they're "stinky" (really, they are---the fishy smell is overwhelming), she doesn't care much about looking at them.  The gorillas, who like to hang out right at the other side of the glass, have never held her interest for more than a second.  The current favorites:  alligators, tigers, and rhinocerous.  Why?  Who knows.  But she was in love. 

Fake rhinocerous, I love you almost as much as the real thing :)

Mommy, a tiger.  A real tiger!

The cover of the zoo map (which she clutches the entire time we're at the zoo) is a photo of the tiger.  She kept looking at it, then showing it to the tiger. 

Hey tiger, this is you!  Check it out!

This might be my favorite picture of the day:

Tiger: Wow---I can't believe what I'm seeing through these bushes.

Maya: Wow---I can't believe what I'm seeing through this window.

In other zoo news, she simultaneously desperately-wanted-to-ride and was-terrified-of the bug carousel.

She was exhausted when we got home.  She had a snack and then was having some sort of tantrum-y fit, whining and pointing and trying to throw herself out of the booster seat.  I took her out and carried her around the kitchen, muttering "what, what, what is it that you want?  I don't understand" and my mind wandered, again, to our quest for a communication solution.  As it turns out, she wanted the white board & dry erase marker (she lunged as we passed it on the counter).

She sat on the floor and drew (and I sat at the table and checked my email)  and suddenly I heard "Done!"

Done with what?

As it turned out, she was giving herself some fine motor practice with the marker cap.  I don't know if she's done this at school or what, but it was seriously cute to watch her practicing her to cap a marker, and triumphantly yelling "Done!" when she had it, well, done.


That's one focused girl  :)

4 minutes and 10 seconds

A week ago someone tweeted me the title of a movie---"Only God Could Hear Me".  This movie chronicled the stories of 4 adults, all nonverbal, who used communication devices . . . . while simultaneously telling the tale of the creation of the symbol language used in one line of devices.  After a week of trying to get my hands on this movie, a copy fell into my lap (almost literally).

It only took 4 minutes and 10 seconds to really hit home.  You have 4 minutes and 10 seconds, right?

Right?

I mean, you've probably watched a lot of my (silly) home movies of Maya---more than 4:10 worth, I think.  And, on behalf of nonverbal, underestimated people everywhere, Maya would appreciate it if you would check this out.

It may just leave you changed.  Really changed.  It might shift the way that you think about some people.  An eye-opening moment, and all it costs you is 4 minutes and 10 seconds.

By the way, if you get sucked in, you can watch the entire thing on YouTube--it's only 60 minutes long.

Here you go:



If you can't get the movie player to start, click on the little part that says YouTube and it should open in a new window.  If that doesn't work, go to YouTube and type in "Chris Klein AAC"---it should be the 3rd link down, with a run time of about 60 mins)

I am looking for an app . . .

Here's the situation.  Over the last 5 weeks, I have spent countless hours in front of my computer, searching for our communication solution.  Reading blogs, joining Facebook groups, sending emails (mostly to strangers), watching YouTube videos, reading review websites, joining groups for speech therapists and AAC specialists, scheduling meetings with sales reps from the big devices companies, etc.  We are looking at designated communication devices, we are looking at iPad apps, we are looking at low tech PECs books----we are open to everything (and probably the best solution will incorporate something high tech and something low tech).

I am literally trying everything that I know how to do. 

But I need your help.

The iPad apps---well, they are slippery.  A moving target, literally, as new apps are released daily and old ones are modified and fine tuned.   I'm learning as fast as I can, but I am 1000% sure that somewhere out there exists a person (or, more likely, several people) who can help to answer my questions and guide me in my app search.

Help me find that person, please.

Spead the link to this blog post to everyone you know who might have helpful input----or to anyone you know who might know someone else who has helpful input.  (I'm thinking SLPs, speech therapists, iPad people, assistive tech people, people who have speech devices, people who use iPads for kids with special needs, teachers at special needs school, augementative and alternative communication people, etc).

Here's what I'm looking for:
-A full speech generating communication app
-The app should make it is for me to model correct grammar ("I want to eat a bagel" instead of "I want bagel" or "I eat bagel")
-The app should make tenses (play, plays, played, playing) clear, accessible choices
-The app should make plurals an easy option
-The app should not be solely text-based.  Maya is only 3.5, she can't read yet.  *It's ok with me if it starts as text based but I can take the time to add in images on the tiles.  I will take the time to do that stuff, as long as it's possible.
-The app should have a QWERTY keyboard section

Does an app like that exist?  Or is one on the horizon?

The bottom line:
I need an app with growth potential.  I don't want a simple app that might be a good fit for a young child.  I want something big, that I can start exposing her to, that will last.  It's not fair to teach her an app, then take it away and teach another one.  I need something that is big that I can model correct grammar with, and that she can start using too.

Other info:
-We have Proloquo2Go, but it seems cumbersome with the folder layout.  "I want to eat a bagel" takes a large amount of manuevering.  Fine for an adult, or older child, but I'm not sure about a young one.
-I'm eyeing TouchChat with WordPower because I like the word prediction---that seems close to what I'm envisioning--but I can't get an answer as to whether I can add images to the text based tiles. 


Please email me: uncommonfeedback@gmail.com with any information that you have---or, to pass along the email addresses of people who might know.  Thank you, thank you, thank you.  Maya thanks you, too.

As always, I'll pass along anything that I learn here, so that anyone who's interested can benefit from the research, too. 

Maya gets a tent

Last week we ran into Maya's former OT (from EI) and she was like "Wait here!  I've had a present for you guys in the trunk of my car for 2 months!"  We waited and she returned with a tent.  I knew Maya was going to flip out---she loves tents.  We drape blankets over the top of her crib and pretend she is in a tent and she can't get enough of it.

The next day, after school, we put the tent together (which was nice and easy--thanks, IKEA), Maya gleefully squealing next to me as it went up.  She dragged her word book inside and insisted that I close the flaps, so she could have some privacy.

I sat on the floor, listening to the ripriprip of velcro as she played with her PECs, arranging and rearranging and making little happy noises.  She didn't want me to open the flaps.  It was kind of boring.  Finally, I convinced her to let me open them up by suggesting that Parker join her in the tent.  "Pa!" she agreed.

This is the best!  Me & Pa in the tent!

Parker was less enthused.  Being confined in a little tent with only one escape route and an overzealous hugger is not his idea of the best time.  His survival instincts are too strong.  After a few minutes, I gave him permission to leave and he made a hasty exit.

Then Maya realized the best part of the tent---you can knock it over.  This was an accidental discovery, but a happy one.

She would throw herself backwards to knock it over, laying on her back and looking and the stripes and kick-kick-kicking her legs to her heart's content.  Then she would sit up, righting the tent, and throw herself backwards to do it again.

Here's a (pretty grainy, low quality) cell phone video where you can see her delighting in the knock-over-the-tent game:

An interview with Maya, and Halloween, too

The busy-ness continues on this end.  Thus far the week has brought: a visit with family visiting from out of town, a meeting with an assitive tech consultant, a nearly 3 hour job interview (same job, second round of interviews), Halloween excitement, trick-or-treating, an OT parent workshop, a support group meeting, and too much time spent in the city.

Still to come between now and Friday: meeting one of my imaginary internet friends for the first time (hooray!), feeding therapy, a trip to the records department of the children's hospital (ugh), and a meeting with the representative from one of the communication device companies.

I'm a week behind in my assignments for my writing class, and blogging has fallen to the side.  There's just not enough time at the moment.  Evenings have been for catching up on email, replacing tiles in the word book, and planning/organizing.

Project Communication continues to march on, with exciting results.  It's working.  Maya's becoming more communicative---and not just with the word book or the iPad, but kind of overall.  She's making more sounds, she's pulling me around the apartment and putting things in my hands to tell me things.  It really seems as if she is suddenly realizing "Hey!  I want to say things, and these people are trying to listen."  She's getting a voice (and a multi-modal one at that).

Listen for yourself :)

Here's a little interview with Maya that I shot this morning while we were waiting for the bus.   If you stick with it until the end, you'll see a bit of bonus Halloween footage (and the iPad, briefly).