Uncommon Sense

Uncommon Sense is up for an award!

2012-02-22T20:27:00.000-05:00

I received an email late last night notifying me that Uncommon Sense has been selected as one of the 5 finalists for "Favorite Special-Needs Parenting Blog" in the About.com Reader's Choice Awards! Thanks, everyone :)

You can go to this page and check out all 5 of the finalists.

Then, head to this voting page and cast a vote! You can vote once a day from now until March 21st. There's a little graphic thing where you can also see who's in the lead. (I also put the little clickable vote icon on the upper right corner of the blog.)

I'm really psyched to have been nominated. Also, a special thanks to the person whose quote was used to describe my blog, that was really nice to read :)

Princess Maya (half-hearted sigh)

2012-02-21T20:07:00.006-05:00

Let me start by saying that I blame her school. (Yes, her lovely, wonderful school that I love.) This is all their fault.

The Friday before Christmas Maya came home with a little holiday gift (I'm not sure whether it was from her teachers or from the Santa that came to visit the school). The bag contained a little finger puppet (a dragon, which she called an alligator and adored) and a book.

This book:

She went bananas over it. At first I thought it was because of the masks (masks are fun, and we would hold our fingers over our eyes as "masks" as we read) . . . but soon I realized no, it wasn't the mask, it was the princesses.

Princesses! (please imagine me saying princesses! the exact same way Seinfeld says Newman!)

Prior to this book, Maya had never encountered a princess. We don't really watch tv, we didn't have any princessy books, and the thought of dress up gowns or shoes were laughable given her motor issues. Here Maya, let's put on layers of poofy dress and plastic kitten heels and run around!

I was cool with the lack of princesses because, on principle, I don't like them. They're too thin and too perfect and too appearance oriented and too girly. I've never been girly. I love the fact that Maya's favorite things include alligators and dinosaurs, that she doesn't mind dirt. I didn't want to introduce princesses as a standard of what makes girls good-beauty and dresses and pretty hair (and often, some codependency, it seems).

But damned if she didn't flip her little lid over the princess book. She would grab my index finger and put my finger on a princess and wait, her code for "Name this, Mommy." And I would say "Belle, Tiana, Ariel" etc . . . and sure enough, now she knows their names. She's in love with them. (And secretly, I kind of liked that she was into them. It's very "typical little girl," and I like that if other girls had princess backpacks or whatever Maya would recognize them and share that interest.)

I didn't embrace the princess trend the way I embraced the alligators . . . I didn't want to discourage it, but I didn't want to overly encourage it, either. We visited the "princess store" (Disney Store) but didn't buy any princess action figures or gear.

Then we inherited a bag of hand-me-downs filled with princess stuff. A chair, a coat, a hat, cups, etc. Maya was in heaven . . . and I started to cross over to the dark side.

You may have noticed the princess chair in this picture on the Facebook page:

. . . as it turns out, it's much easier to get her to sit in one spot (for a snack, or a book) if I can say "Go sit in the princess chair."

Then there's the coat. When I first saw it I laughed, "Oh my. She might have to join the Ice Capades if she wears that jacket." Dave thought she looked like one of the Pink Ladies from Grease. I thought maybe we would just wear it around the house.

so happy that she wouldn't stand still enough for a picture

. . . but, as it turns out, she's happy to put on the princess coat and head out the door. (Whereas putting on her normal coat sometimes involves some serious wrestling maneuvers.)

And then there's the princess hat . . .

. . . aka "the only hat to have ever remained on her head for more than five consectutive minutes."

What can I do? She's going to love them anyway. I'm feeling very if-you-can't-beat-'em-join-'em.

Well, mostly join 'em. I didn't buy her princess bedding because I knew she would love jungle animal bedding just as much. We still only have the one princess book. And I'm going to talk a lot about how the princesses are kind and share and use manners and sit still for their haircuts and . . . wait, what now?

Yes, when Maya was unenthused about getting a haircut today I may have leaned over into her stroller and whispered, "Don't you want to go get your haircut like a princess?!"

I mean, I may as well make it work to my advantage, right?

Princess Maya, post-haircut

(PS-We also streamed a princess movie last night. She was over the moon excited (clip below) but lost interest after about 2 minutes. I think that's a happy compromise.)

Maya & the big girl bed

2012-02-17T20:47:00.002-05:00

The day has finally arrived!

(. . . drums a-rolling . . . )

Big girl bed day!!!

After Dave got home today we rushed to convert the crib into a toddler bed:

The crib in its final intact moment.

We got the toddler rail on and stood the crib back up, only to realize there was a big problem. Poor kid wouldn't stand a chance of not rolling out of bed if the bed was tilted at this angle:

We quickly realized we needed to unscrew the feet from the crib wall we had removed and move them over. (See the foot in the bottom of that picture?)

Problem solved. And adorable :)

Maya loved it and climbed right in . . .

. . . and Parker loved that there was a perfect doggie-sized opening!

After a minute or two she grabbed one of her "magazines" (Lakeshore catalogs) and got to work reading.

But she took a break to say, This is awesome!

With all of that enthusiasm, we weren't sure how bedtime would go down. It went . . . well, see for yourself. Here's a little video of her seeing the bed for the first time (this afternoon) and then going to sleep tonight (care of the freaking awesome video monitor that I did indeed buy):

So, right to sleep. What a champ :) (And how cute was the little pop-up head? Hee hee. I love this video monitor already)

Tomorrow morning will be interesting. It may be an IV coffee drip kind of day.

Change is a-comin

2012-02-15T21:12:00.000-05:00

Look what arrived today:

That is a toddler bed rail. Friday night we're converting the crib to a toddler bed. It's going to be epic.

Maya is now 3 years 8 months old. She's a big girl. We've held off on transitioning to a bed under the if it ain't broke don't fix it philosophy. She loves her crib and she's a great sleeper: she goes in quitely (worst case scenario is a minute or two of fussing), sleeps through the night (11-12 hours), and plays quietly in her crib when she wakes up (we'll hear her chattering, but she'll just flip through books, etc).

(Don't send hate mail. We know we're lucky.)

But the time has come. She's coyly started to lift her leg up when she's standing in the crib, in a hey-maybe-I'll-just-climb-right-out teasing way. With her, um, lack of coordination any attemps at climbing would land in a very hard fall. She's just hinting at the idea of scaling the crib, but we're going to nip it in the bud.

Also, and I hate to admit this, but the crib is starting to feel a little like lazy parenting on my part. It's blessedly easy to have her contained, but she should move into a bed now. We should Maya-proof her room, and she should learn how to climb out of bed and make us crazy, and she should get to get up in the morning and pull all of her books out of her bookcase and make a big mess. That's what kids do. It's only fair.

We're waiting until Friday night because Dave & Maya are both off from school for the next week . . . and if we're going to be losing sleep, then we're all going to lose sleep together, dammit.

We've got a lot of logistical issues to think through: where to stash the fan that runs in her room at night (away from little fingers) and how to hide the cords to the air purifier. I need to get door locks for her clost (french doors) so that her fingers don't get pinched. We've got to put down some mats or pillows because I've got a feeling that sooner or later she's going to plummet to the floor.

The most puzzling question is the door status: she's always slept with the door to her room closed. It's dark and noise blocking. I feel like we should keep that consistent (because closed door = bedtime) but I know I'm going to want to be able to peek in on her, and to make sure that she's safe. I'm thinking about getting a video monitor (we still use a regular baby monitor-with all of our fans and air purifiers I would never hear her without it) but I'm not sure if that's smart parenting or helicopter parenting. (If I take the plunge and get one I bet we'll see some adorable footage, though.)

I can't wait to see what happens on Friday :)

Happy Valentine's Day(ish)

2012-02-13T19:18:00.000-05:00

Back in the PM days (that's Pre-Maya) I couldn't have cared less about Valentine's Day. First, I'm not an overly romantic gal. Second, the whole forced-day-of-love thing didn't make me warm & fuzzy.

However, now that Maya's around, I celebrate every day possible. Valentine's Day, St. Patrick's Day, Labor Day, the Ides of March . . . whatever. Give me an excuse to do something slightly festive and indulge her a bit and I'm on it.

I was so ready to celebrate with some low-level craftiness* . . . Maya, however, embraced her toddlerhood and had no follow-through, so we ended up with "mostly finished low-level crafts." Eh.

*low-level craftiness means that the projects are fun and kill some time, but aren't Pinterest uploadable. All of my craftiness is low-level.

First project--make valentines for Maya's classmates.

We got off to a strong start:

Painting on rolled-out IKEA paper that I had taped to the coffee table.

Right after I took that picture Maya asked to wash her hands, and then the game was over. Twice she ran back to the paper, put paint on her hands, and then told me again she needed to wash them. Painting, done.

While she was at school today I cut the painted paper into little hearts. After school we worked together to glue them onto construction paper squares. The final step was to add little sparkly hearts, but Maya wandered away and I decided that I wasn't going to sit on the floor gluing hearts by myself, so that was the end of that.

The one on the right is one of 3 valentines that managed to get adorned with shiny hearts.

Next, we baked cookies. (The low-level craftiness version of "baking" involves boxed cookies from the refrigerated section of the grocery store.)

She was SO excited to put them on the pan . . .

. . . and SO excited to watch them cook . . .

. . . but when it came time to eat them, she just wandered off again. We're sending them into school tomorrow. Also, tomorrow is the class's Valentine's Day party and little Miss Maya is going to get all dressed up. It's going to be adorable :)

Remember me?

2012-02-09T21:01:00.000-05:00

My name is Dana, and I used to write things here.

Hello again :)

Here's what happened:

Maya got sick. It wasn't anything major, just a virus (fever and coughing), but she had to miss a few days of school because the long, napless school day (7:15-3:15) just isn't fair for a wiped out little girl. The thing is she wasn't sleep-all-day sick, she was high maintenance sick (cuddle me, scratch my back, turn on the tv, no-don't-leave-sit-with-me). So I spent most of the daylight hours coddling her and as soon as she was asleep, I was working (a plus of working from home is that I can get in my work whenever I need to).

She's been back at school since Tuesday and I've been busily trying to restore order to our home and making up some hours for work. Yesterday I started to eye the blog, much in the same way that a lapsed execiser eyes the gym---Hey there . . . I remember you . . . we used to have good times together, right? I'm thinking about coming back . . .but not just yet. Maybe tomorrow.

So this is just a get-back-into-the-gym post. Just testing the waters.

Remembering how to sit for a few minutes and write something.

It's nice to be back :)

A dose of cuteness

2012-02-01T10:37:00.000-05:00

First, a cute story. The other night as Dave & I were heading to bed he went in to check on her. She needed a diaper change, so her got her out of the crib and went to work. For the first time, she was really talking in her sleep (as opposed to that one time she was signing in her sleep). I could hear her from down the hall---little sweet noises "Ada lala. A da. Ba ba da." etc. So super adorable. Dave said that she never opened her eyes, just kind of chattered a bit and then went right back to sleep.

Second, a cute video. This one is care of Maya's preschool teacher, and features her holding hands and walking with her new little buddy, Elijah. (Thanks also to Elijah's mom, who gave permission to share the video here---I always check in with other parents before sharing stuff.) I think it's hilarious how the women in the background are trying to kind of promote chivalry by asking him to slow down and be gentle because she's a girl :) (Maya clearly couldn't care less). And I love whoever says "Come on, woman" because, well, that's exactly what I would have said if I was there!

I think I need to get Elijah to teach me some tricks, because she doesn't hold my hand that easily when we're out and about.

Review: The AMDi iAdapter case for iPad

2012-01-29T20:34:00.003-05:00

Over the past week I've gotten a few inquires about Maya's iPad case, so I thought it would be best to do a review here. (As usual, I am not affiliated with this company. They don't even know that I exist.)

The Basic Info

Maya's iPad is in a case by AMDi called the iAdapter. (She uses an iPad1, and therefore the original iAdapter. They make an iAdapter2 for the iPad2.) It is a hard black rubberized case that I assembled with a screwdriver (you don't just pop the iPad in and out, once it's in there it pretty much stays in there). You can find the full product information and specifications about the iAdapter here.

The Pros
We bought this case for a few key reasons:

1. External speakers: We anticipated that the iPad would be serving as Maya's voice . . . and she deserves to be LOUD!!! From my (extrememly non-technical) perspective, the iPad speakers just aren't all that. If Maya is in a noisy classroom, restaurant, or grocery store (like we were today) and she says something with the iPad, I want to hear it, loud and clear. These speakers are no joke. They have 3 settings (as seen in the middle of the pic below)--HI, LO and OFF.

2. Button cover: Maya learned very quickly to push the button on the iPad--to turn it off, to exit an app, to pull up the keyboard. Since there's only one button on the entire thing (and most kids are a fan of pushing buttons) she would just push-push-push-push and drive me crazy. I had to hold my thumb over the button when we were using the iPad, which was irritating.

This case addresses that issue with a small plastic sliding piece that can cover the button. It's challenging enough to move that Maya can't do it. Very helpful.

3. Durability/carry-ability: This is a tough case. Toddler tough. I love the carrying handle (although Maya generally picks it up with two hands on the sides) and the fact that it just feels durable. I don't worry about it falling off the couch (hey, it happens) or getting too banged up in her backpack.

4. The stand: The stand comes with the case and props the iPad up at a great angle. It's sturdy and doesn't tip or get pushed over. A long groove in the back of the case lets the stand kind of lock in. (You can see it in the pic above.)

The Cons
These are the issues that I have with the case. (Remember, though, I'm not a techie type of gal. It's possible that I'll list my grievances and someone will reply "Hey, you're kind of an idiot and just don't know how to use the case" . . . if that happens, I'll come back and edit my list.)

1. I wish there was a way to monitor the power level. Because the iAdapter has a speaker system, it has to be charged. The problem is that I can't tell how much battery life is left. I basically charge it every other night, but that's just a guess. I wish there was a way to see how much juice was left.

2. I initially had issues with charging the iPad. Weirdly, when I screwed the case together tightly the fit was so snug that I couldn't get the iPad charger cord all the way in. I had to loosen two of the screws slightly. That's annoying because I would like to feel that the case is super secure fitting.

*post modified 1/30/12: I orginally had "#3-I can't turn the screen off" here. But, sure enough, someone with the same case wrote on my Facebook wall that there is indeed a (very tiny) awake/asleep button. Big enough for me to use, but too small for Maya to find. Very clever!
4. It would be nice if the screen was covered. Before this case we had an Otterbox, which felt a little more indestructible because of the hard plastic protective piece that would clip on over the screen. It would be nice if the iAdapter had some sort of shell that could attach to the front and protect the screen.

5. It's expensive. But considering that it's a hard core case with great speakers and unique features, it seems fairly priced. (It's also wheelchair mountable)

The bottom line
I liked the ruggedness of the Otterbox Defender slightly better, but we eagerly moved to the iAdapter for the reasons listed above. The speakers in particular are a huge bonus. While the cons are irritating, they are definitely outweighed by the pros (for us, anyway).

*You can see Maya using her iPad, in the iAdapter case, in many videos on the blog. This post has 2 videos, and each one shows the iPad (and case) from a different angle: http://niederfamily.blogspot.com/2012/01/progress-report-on-communicating-with.html

Progress report on communicating with the iPad

2012-01-25T19:46:00.001-05:00

Watching Maya with SfY has been really amazing. I've spent a good amount of time reading research and learning things like:

When starting with AAC, keep it light and fun, no pressure
Don't ask her to label items, foster actual communication about the items instead
In the beginning, a lot of communication will likely be food-driven (or, in Maya's case, milk-driven. Little milkaholic.)

I've resisted the urge to push, which has been difficult. We have this amazing thing! We should dive into it! We should open words and build full sentences and work on grammar and oh-does-she-even-know-pronouns? and should we start showing her the keyboard and how to spell her name and . . . . well, you see. My brain gets away from me.

I want to run towards the water and jump in and swim laps and splash. But Maya is 3. She wants to sit on the steps with her feet in the water. And I've been respecting that. (Well, mostly. You'll see in one video that I draw a line and make her practice turning on the iPad before we read some books, and in the other I try to show her the "stickers" button. I'm starting to push, respectfully.)

In this video, Maya shows how she's learned to turn on the iPad, and we talk about reading:

In this picture, you can see one of her favorite things to say (the top sentence bar shows her word history): want-want-want-want-want etc.

This video shows an exciting development: this week she's started to explore the vocabulary on the app. She likes tapping her way around, visiting her favorite words and finding new ones. It's a big step---one that shows she is definitely interested in an unprompted way---and I'm really excited to see it starting.

Also, at the end of the video I included a clip of how things aren't all perfect. There are plenty of moments that don't pan out all that well. I thought that this is important to see in case any other parents of potential AAC users are watching and thinking "Oh, Maya does this perfectly and my kid couldn't." Well, Maya's not perfect (and neither am I), and we're learning together.

Also, here's what Maya's teacher had to say on Monday: "Maya has gotten a lot more accurate with pointing to what she wants on the iPad" Woo hoo!

Maya's story is in Bloomberg News

2012-01-23T18:21:00.000-05:00

Today was a big day for Maya--she crashed on to the mainsteam news scene. She appears rather nonchalant about the whole thing, really. I asked her if she was excited and she used the iPad to say "milk-milk-milk-milk". So, I guess that's a no.

Several months ago I was put into contact with a reporter from Bloomberg News who was working on a series of stories about genome sequencing. At the time, we were still in talks with RGI, planning to meet with a doctor sometime in the future about the possibility of genome sequencing. We spoke with John many times over the next few months, and he came down from Boston to meet Maya (and brought a camera man to shoot some video of her playing and an on-camera interview with me--eek). We kept checking in as we went to Yale and shared our story here, and then had the fastest fundraising ever.

I kept it a secret, because news seems fickle to me, and I felt like I didn't want to mention it until it was a sure thing. A really sure thing.

Today, the article went up on Bloomberg's website. The first half of the article addresses the potential that genome sequencing has with regard to curing cancer (hence the title), but the second half is about Maya's undiagnosed story. There are 2 pictures, and then the aforementioned video sequence (which is slightly extreme-close-up for my taste, but overall well done, and I don't sound like a fool, so . . . win, I think.)

Here's a link to the article.

Here's a direct link to the video (which you can also see on the left side of the article). (Also, the video opens with one of my favorite pictures of Maya---her first "real" smile. So cute.)

And if you're interested in following the series, here's a link to John's first article (posted last week), which was the first in the series.

First time walking in the snow

2012-01-21T21:34:00.000-05:00

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

2012-01-18T20:08:00.000-05:00

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!

2012-01-17T19:41:00.000-05:00

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

2012-01-14T19:19:00.000-05:00

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.

2012-01-13T19:33:00.003-05:00

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

2012-01-12T13:18:00.001-05:00

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

2012-01-11T19:14:00.000-05:00

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.

2012-01-09T12:24:00.002-05:00

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?

2012-01-06T13:26:00.001-05:00

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

2012-01-03T19:57:00.001-05:00

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.

Best of 2011

2011-12-30T19:35:00.001-05:00

It's been a big year. Maya started walking (see posts 3, 8a, and 8b), magically learned letters, was obsessed with vultures, then dragons, now alligators. She started preschool and turned from a toddler into a little girl (who still toddles). The blog won an award. We were able to fundraise all of the money needed for Maya's exome sequencing in 6 hours, and you generous folks kept donating, raising an additional $1,050 that will help another undiagnosed child (or children).

2011 was a good year :)

Here are the top posts that were written in 2011, ranked by number of reader comments. (I was going to do 10, but there were a lot of ties, so it grew to 15)

1. We Are More Thankful Than You Are
(Why gratitude is sometimes sweeter for parents of kids with special needs)

2a. For the therapists, from the mom
(An open letter to the therapists who come to our homes to work with our kids)

2b. The Balance
(In which I try to figure out how to balance therapy with real life)

3. Simple certainty & Kristi Yamaguchi. Wait, what? Kristi Yamaguchi?
(I realize that how people see Maya is totally not what I see, and that maybe I finally understand Kristi Yamaguchi's parents.)

4a . He's just not that into us (doctor style)
(Reflections on another genetics appointment, during which the doctor tries to break up with us and I won't let him--the plight of the undiagnosed family.)

4b. My kid is nonverbal, we use an iPad, and I still didn't like that piece on 60 Minutes
(A response to 60 Minute's "Apps for Autism" piece)

5a. Life, Undiagnosed (and how I've come to be ok with that)
(My evolving stance on being undiagnosed, from the moment of the first "she needs genetic testing" phone call to the present)

5b. After the Airpost: Reflections, and the Boats of Acceptance
(A one-year-later follow up piece to Amsterdam International)

5c. We've got some medical news (part 1)
(In which I recount Maya's genetic journey and lay the foundation to tell you guys about exome sequencing)

6. Pull up a chair
(The tale of our assistive tech re-evaluation, written in an you're-right-there-in-the-room-with-us style.)

7a. We said we'd walk together, baby, come what may . . .
(On our 5th anniversary, I look at our wedding pictures for the first time, and put together a post made up of them, so you can "come to our wedding" too.)

7b. Behind the scenes: The making of the 2011 holiday card
(The blooper reel from our photo shoot. My sister said it's the "funniest post you've done in a long time.")

8a. Hold on to these moments as they pass
(I realize that some day I won't remember when Maya used a walker, and a video of her taking a few wobbly steps.)

8b. See Maya walk. Walk, Maya, walk!
(The first day that she really, really walks. Right across the apartment. On video. Amazing!)

8c. First day of preschool!
(A video montage of Maya's first day of preschool)

It was fun to go back and look at these, and to really see (in the pictures and videos) how far a year has brought us. Here's to 2012 :)

Did you just celebrate a holiday?

2011-12-29T13:49:00.001-05:00

Maybe you celebrated Christmas, maybe Hannukah. Maybe relatives or friends came to visit. Maybe your living room/playroom/ kids' bedrooms looked like there's been some sort of toy store explosion.

Maybe your kids got books that make noises:

Or maybe you've got some singing Christmas cards around (probably by now, you wish they would just stop singing):

Or maybe you used some fancy electronic lights in your menorah:

Or--forget--the kids, maybe this year the grownups got some fun new "toys" to play with:

Maybe now, while holiday detritus is still lingering here, there, and everywhere, is the perfect time to revisit button battery safety. Because every item pictured above contains a button battery, and like I've said before, these tiny items pack a very dangerous (sometimes deadly) punch.

After my last post on button batteries, I received an email about Energizer's new awareness campaign, The Battery Controlled. The company is redesigning the packaging for their button batteries to make them more childproof and include improved safety warnings. Still, the most important thing is for parents to become aware of how dangerous these batteries can be (which is why I keep mentioning them, and encourage you to share this information with any other parents you know).

One of the links that I was sent was to this very-short-and-amazingly-powerful video. Check it out. Share it. (It's only 2:16 long and beautifully done)

That same email also referred me over to Emmett's Fight. Emmett was 12 months when he found and swallowed a button battery (it had fallen out of a remote to his family's DVD player, unbeknownest to them). His family is committed to raising awareness about the dangers of button batteries through their website, and continue to tell his story on their blog. It's a great resource for those interested in raising awareness, and Emmett's fighting spirit has brought him a long way (per the family's blog, he has had 4 inches of his esophagus removed, has had multiple cases of collapsed lung, has endured 19 surgeries, has been under general anesthetic 20 times so far and he has had close to 200 X-rays. He has been hospitalized in the Pediatric ICU on and off for a total of 7 months).

Take a look around your home. Make sure that items with button batteries are only played with under careful supervision. Share the video, share the information, help spread the word so that all parents of small children realize that button batteries are dangerous.

Today, it's all about me

2011-12-28T18:46:00.002-05:00

That's right--me. Dana. (aka "the mom" aka "Maya's mom")

Ellen of Love That Max asked me a little while back if I'd be interested in writing something for a guest series she's running this week, entitled "This Is How I Do It" . . . and despite not really knowing how I do it, or what "it" even is, I jumped at the chance. (I've never done a guest post before, and I felt almost like a real writer. Almost.)

She sent a list of questions---not about Maya, just about me---and it was fun to come up with the answers and share a little bit more about myself, the things that keep me going, and why I rock (her words, not mine).

My post is running today---head on over here and check it out!*** While you're there, check out the others in the series, which started on Monday and will end Friday.

***My favorite question was the last one, so if your attention span is feeling short tonight, skip to the end and read "I rock because . . ." first.

And since we're talking about me, here are two pictures from Christmas morning (the others will arrive someday, after I upload and edit all 7 million of them):

My two favorite things on Christmas morning . . . Maya and my new scanner.

This thing is going to change my life into a mostly paperless existence. You know, once I get it out of the box, install it, and start using it.

PS. If you're new here today, popping in care of Love That Max, welcome :) You may want to swing up to the "If you're new here" tab to get the lay of the land.

Dear Santa

2011-12-24T20:30:00.000-05:00

Dear Santa,

It's me, Maya. I think we need to clear the air.

This year, when Mom & Dad brought me to visit you, I was excited. They told me that you were coming, and I was happy. I've been practicing saying your name all month! ("Sssss!")

This is us---do you remember?

And then I heard your jingly bells and I looked up and suddenly, you were there! I couldn't believe it!

Santa! It's really you!

But then . . .well, Santa, I don't really know what happened. I mean, I had been waiting for to see you for a long time. But when my big moment came, I got a little scared.

And then . . . then I got a lot scared.

And you were so nice to me, and talked to me about my Christmas wishes, and whispered nice things . . .

. . . but I still liked you a little better from a distance.

But there's something you should know. I'm still a big fan. As a matter of fact, I couldn't believe that you had given me a present for visiting you! I was amazed.

It made me want to shout, "Santa's #1!"

So, I hope there are no hard feelings, Santa. Parker and I are really, really excited for you to come visit. All day long, Mom and Dad were asking me, "Maya, do you remember who's coming tonight?" and I would say, "Sss!" (As if I could forget you were coming. Ha!)

I got things all ready for you. First, I put some cookies on a special plate that I made with my friends at preschool.

Then, Daddy said that maybe this year we should leave sugar for the reindeer (we used to leave hay, but we thought they maybe could use a little extra energy). I thought that sugar was a great idea!

Like, a really, really great idea!!!

I helped to scatter it around the plate so that all of the reindeer can get a lick.

Santa, I hope that you have safe travels tonight, flying all around the world. I want you to know that even though I was scared of you (a little), I still want you to visit my house. Also, even though sometimes I'm a little naughty, I'm still mostly a good girl. And when Mommy asks me, "Maya, are you a good girl or a bad girl?" and I say "Ba!" with a naughty smile, I'm just joking. I'm not really a bad girl!

Also, don't forget Parker! He's, like, the best doggie ever.

Lots of love always,

The cutest little girl ever

(that's me, Maya!)

A note from Dana: If you want to see Maya on Christmas Eves past, go check out this post :)

And if you want to see the past 3 years of Maya's visits to Santa, go check out this post :)

Cookie decorating---fun for everyone, and you can sneak in some OT, too

2011-12-24T06:53:00.000-05:00

I have some things to talk about--namely the plight of our assistive technology quest--but that will have to wait until after Christmas. Right now we're all-holiday-fun-all-the-time, trying to fit in fun crafts or activities. Here are some pictures from cookie decorating, done last weekend.

Cookie Decorating
I made sugar cookies and bought a big gingerbread man (at Trader Joe's for $2) for us to decorate. Whipped up a simple buttercream frosting (3c powdered sugar, 2 sticks of butter, 1tbl vanilla, a few tbl of milk) and added some different food colorings for fun. Maya had a great time playing with all of it, though the adults did a lot of the decorating.

Managing to sneak a little fine motor work into our decorating

Maya decides that she wants to use the blue icing. About 10 seconds after this picture she came to the conclusion that the knife was too difficult to use, and dove in with her hand.

Grandma, there's icing on my hand!

And then she rolled the frosted hand in sprinkles. It looks delicious.

Behind the scenes: The making of the 2011 Holiday Card

2011-12-20T19:54:00.000-05:00

Background info: The photo shoot was done in our living room, on the floor (sans dropcloth---it seem like a good idea, but we would have been tripping on it, and I don't think it would have contained the mess, anyway). The backdrop was holiday stuff that we tape to the back of our couch (with black duct tape). We took 233 pictures. The clean up is an ongoing effort---when I dust, I'm still finding flour. It keeps going airborne and redistributing.

All pictures will be enlarged if you double click (I think).

In the beginning things were festive, but flourless . . .

(sprinkling flour)

Then, the stage was set . . .

And the talent was brought in . . .

Maya: What is this stuff?

Parker: Guys, this seems like a very bad idea.

Maya: This is fantastic!

Parker: (gulp)

Maya: I think I could be very naughty with this stuff. Hee hee!

Parker: I think I'm hyperventilating.

Parker: Save meeeeeeeeeeeeeeeee!

This flour is so slippery!

She had some fun shaking the bag . . .

and then moved on to dumping.

This is the most fun I've ever had!

(that's Maya talking, not Parker. In case you can't tell)

Maya: Daddy! I need more flour!

Parker: Please no.

Maya: Whoa!

Parker: Seriously, are you guys seeing this?

Maya: Hey Mommy, are you watchin' me?

Parker: Yeah, is anyone watching? Anyone?

Maya: Woot woot! Can a girl get some more flour up in here?!

(note Parker seeming to stretch as far as he can away from her)

FLOUR!!!!!!!!!!!!!!!!

Parker: I can't believe they really gave you more. Everyone has lost their mind.

When Dave wasn't quick enough to refill the bag, Maya took matters into her own hands:

Maya: Fine, I'll do it myself.

Parker: Someone needs to cut her off.

Maya: FUNNEST DAY EVER!!!!!!!!!!!!!!

Parker: We're done, right? Please say we're done.

The aftermath:

(fancy lighting, right?)

Ended with a great-job-Maya kiss from Daddy :)

The best holiday card ever (2011 style)

2011-12-19T17:26:00.001-05:00

Front:

(you can click to enlarge)

Inside:

Happy Holidays from our family to yours :)

The picture was taken by us, in our living room---tomorrow, I'll put up a few behind-the-scene photos.

Holiday Card--2010!

2011-12-14T19:38:00.000-05:00

This card was awesome.

Yes, it was real paint (nontoxic washable black finger paint). Yes, it was really on the dog. This was done on the floor of our living room. For some behind-the-scenes action, check out "the making of" post.

There will be a behind-the-scenes post this year as well, but it will be much smaller, since somehow the 2011 card was even more messy than the 2010 one. And that's the only hint you're getting.

The 2011 card will be posted on Monday, to allow time for some folks to get them via mail before it pops up here :)

You need to know about button batteries (again)

2011-12-12T19:53:00.000-05:00

My blog stat tracker lets me see what people google to bring them to the blog (which can be fun to see). Most of the time the phrases are mundane . . . "nieder family blog," "uncommon sense maya," etc. Sometimes they are clear cut, like "how to make a word book" or confusingly hilarious, like "bad mall Santa".

Sometimes they scare me . . . "I think my child swallowed a button battery".

-goosebumps-

It's time to re-run the post about button batteries. The holidays are hear, filled with musical greeting cards, electronics, and toys---many of which have button batteries. Also, we've had a bunch of readers join the blog since I first ran this piece (back in July). I'm copying it below in its entirety. Please share this post----or, if you'd like to share the original (without this prologue) you can find it here. Make sure that everyone is aware of the danger that these batteries pose if they are ingested.

You need to know about button batteries

Please share this post. Injuries and deaths from button batteries are serious, on the rise, and preventable. Most people are completely unaware of the grave danger posed by a swallowed battery . . . until tragedy touched the life of a friend, I had no idea that batteries were so immediately hazardous. Every parent, babysitter, grandparent, etc who cares for small children needs to be aware of the serious danger posed by lithium button batteries.

If you live with small children, you likely have taken safety precautions to make your home a safer place for them. Knives are stored out of reach, hazardous household cleaners are secured, doors have locks and pools have fences. But within your home right now, you have at least one item (but probably several of them) that can cause grave injury, or death, and you are possibly unaware of how rapidly fatal it is.

The Button Battery

These are button batteries (lithium batteries). They are found in so many common items:

toys
books (the kind that make noises)
small remote controls (for air conditioners, ipod docks, etc)
watches
hearing aids
clocks
musical greeting cards
cameras
keychains
flashing shoes
and more (see a more complete list here. Basically, if it's small and battery powered, there's a button battery in there.)

Parents already know that kids shouldn't play with batteries. But these button batteries are even more dangerous than the traditional batteries simply because they are smaller and easy to swallow (or stick in an ear or nose). And because they come in so many items, the saftety regulations are somewhat vague. A button battery in a toddler book, for example, is highly regulated and must be secured in a compartment that requires a screwdriver to open. Pretty safe.

But what about those singing greeting cards?

Kids love those cards . . . but the only thing between the child and the battery is a layer of paper. If they wander away with one and rip it apart, the battery is sitting right there. (Some cards do have a battery lock, but many don't).

And small remotes? I know from experience (because I'm constantly dropping things) that many of these pop right open when they hit the floor, exposing the (shiny, interesting looking) battery inside.

The Danger

(This is the part where some people shudder and think: "I don't even want to know any more about battery dangers because now I'm going to be paranoid about batteries and have nightmares." You know what? Suck it up. The parents of the 12 kids who died due to button batteries since 2004 would probably give anything if they could reverse time and become more aware of the serious danger caused by them.)

Kids swallow these batteries.

And then very, very bad things happen.

When a battery is swallowed, it generates a small electric current, which burns the tissue next to it. (An experiment showed that a button battery will burn straight through deli meat after only 2 hours.) In some cases, a swallowed battery is small enough that it can pass through the system (with careful medical monitoring). In others, the battery becomes lodged (often in the esophagus).

As soon as the battery is lodged against tissue, the electrical current starts. Tissues are seriously damaged. Resulting injuries have required surgeries, feeding tubes, respiratory tubes, and home nursing care.

And if the battery can burn through deli meat, imagine what happens if it reaches a blood vessel.

There are several possible routes of injury, and a few ways that a swallowed battery leads to death. (More information about mechanisms of injury is here.)

The Bottom Line

Batteries are not (by far) the most commonly swallowed household item (they rank at about 1% of the total swallowed items, with 3,500 cases reported to poison control each year). "But while swallowing batteries has occurred for years, the development of larger, stronger lithium cell batteries has increased the risk of severe complications." (from the NY Times)

Few other ingested items will cause potentially fatal damage so quickly. And because parents often are not aware at just how serious battery ingestion is, these batteries may fall into the hands of children, and then get accidentally ingested, without their knowledge.

What Parents Need to Know

1. Button batteries can cause serious injury and death if swallowed.

2. Button batteries are in your home and may be more easily accessible to your child than you think.

3. If your child is playing with a product (key chain, small remote, greeting card, etc) that contains a button battery, they must be supervised.

4. If a child is playing with an item and you are unsure if the battery has fallen out, or you can't find the battery (a remote broke into pieces that scattered, a musical card was torn up, etc) than you need an xray. Head directly to the emergency room and tell them "My child may have swallowed a battery." This is a do-not-sit-in-the-waiting-room type of situation.

5. If you suspect that a battery may have been swallowed, you should call the battery ingestion hotline: 202-625-3333. Likely they will tell you the above. They will also likely tell you that panic is not necessary, but swift action is.

6. Even dead batteries can hold enough charge to kill a child. So dispose of dead batteries appropriately and immediately.

One More Thing

Share this blog post. Or share one of the articles linked below. Or share the National Capital Poison Center page. Put it on Facebook, print out a copy to give a friend, send an email to the caretakers of young kids that you know. When a parent has bleach in the house, they know the dangers to children. The dangers of button batteries should be known by everyone so that the proper precautions can be taken. We can't be careful of something that we don't know about.

(And if your friends react with "Oh my! Why did you send me that terrible thing about the batteries? I can't stop thinking about batteries now!" . . . well, then good. Better to leave someone aware and slightly paranoid than ignorant to the dangers.)

Resources

National Capital Poison Center

A NY Times article about babies and button batteries

A comprehensive article that speaks with a doctor who published a review of button battery data from 1998-2008.

A video from ABC news that shows the batteries and hears from experts.

One mom's story: My son died after swallowing a button battery

The 2nd in the series---Holiday Card, 2009

2011-12-11T19:01:00.000-05:00

So continues the annual parade of holiday-cards-past, leading to the reveal of the 2011 masterpiece :)

When we put together the 2009 card, Maya was 1.5 (and as adorable as ever). Here's the card we mailed out that year, and it's story (the story is copied from a blog post last year, so if it sounds familiar, that's why).

Last year we thought that we had come up with a great card. It was a pictoral representation of 2009, it made us laugh, and we thought it was clever. We didn't anticipate that it would prove to be possibly too clever. Have a look:

Front:

Sorry that's a little blurry. I'm not technologically savvy enough to know how to clean it up.

Inside:

Get it?

To us, it made total sense. Spring = Maya is sad, Summer = Maya is sad, Fall = Maya is sad . . . but in the Winter, Maya is happy! Tie it all together with "It's the most wonderful time of the year" Christmas song quote, and we loved it. But then we had a few conversations that went like this:

Them: "Hey, we got your card! It was really cute. It was . . . interesting . . . you know, how you picked so many crying pictures."

Us: "Did you get it? Like with the whole 'it's the most wonderful time of the year' thing? You know, because the holiday season is fun, so she was only laughing in the winter?"

Them: (pause) "Ohhhhhhhh . . . "

Us: (Sigh)

Oh well. We still think it was an excellent card :)

It's beginning to look a lot like Christmas. Or a strip club.*

2011-12-09T19:37:00.002-05:00

My girl is in love with the Christmas tree . . . like mother, like daughter, I suppose :)

In years past, we've set up a gate system to keep her (and last year, her & Parker) away from the tree. That let us have the nice tree with nice ornaments and present underneath and everything. This year we decided to just make the tree Maya-friendly so that she could get involved with it. Our glass and ceramic ornaments have remained packed away. Instead, we're using a box of cheap plastic ones from the drugstore and a bunch of homemade crafty ones.

There's a huge tree in the living room!

She was a great decorating helper. She would walk over to where I sat on the floor, adding (plastic) hooks to ornaments. I would give her an ornament and she would carry it over to Dave, who would then put it on the tree. It was a great system, and Maya was delighted. Until we were done.

After all of the ornaments were up Maya went into rearranging mode. She takes an ornmanet off of the tree, looks at it, brings it to me or Dave, grabs our hand and leads us to the tree, and points at where she thinks the ornament should go. We hang it up and walk away.

Repeat.

Forever.

Either she loves decorating the tree or she's got some OCD decorating tendencies.

Hmmm . . . I'm not sure about the placement of this one.

Parker, you can't help with this! Silly doggie.

What? This one needs adjusting, too.

Now that she's big enough to do some fun stuff, I've been trying to get crafty. I printed out some coloring sheets (mostly alligators and snowmen---just google "alligator coloring printable" or whatver and stuff will pop up)---we're coloring and painting them, and we'll laminate to hang them on the tree. Also, we made some cinnamon dough ornaments ("recipe" at the end of this post, if you're interested).

Trying to get a shot of the ingredients, but someone's anxious little fingers kept stealing supplies.

Cinnamon dough smells fantastic!

We used holiday cookie cutters and our play dough cutters---that's how we got the alligator and giraffe.

After baking.

After painting.

I thought adding sequins would be good OT practice. Maya thought it was terribly boring and threw the packet of sequins. Dave kept saying "Sequins? Is that a word? Do people really say the word 'sequins'? That can't be a real word." I rolled my eyes at both of them and just did it myself.

But she LOVED the glitter shakers!

This is about where the glitter started to go everywhere. We noticed that we were all covered in it--hair, face, table, floor, feet, clothes, everything. And I thought "man, this is a rookie parenting mistake." So if you see us 2 months from now and we're still shimmering, this is why. Today I still had slitter in my eyebrows and keep finding it on my hands. I feel like I need to wear a sign that says "My glitter is unintentional."

Then she spilled 2 tubes all over herself. But in this picture she's trying to pick it off of her jeans and put it back in the tube. I'll give you one guess at how effective that was.

Dave decided that vacuuming her was the most efficient way to clean up. She liked it :)

Finished products. (We actually left some plain, some painted, and some all glittered up.)

Details:

Cinnamon dough recipe: If you google "cinnamon dough ornaments" you'll find a bunch of recipes, and they're all different. We used about 1 and 3/4 cups of cinnamon, 1 cup of applesauce, and a good squeeze of glue (maybe 1.5 tbl). The dough was too sticky, so I just kept adding flour until it got less sticky and more doughy. You'll need extra cinnamon for coating the countertops and rolling pin.

Ornament prep: After you cut out whatever ornaments you like, stick them in the oven (we did a foil lined cookie sheet) on 200. I flipped them every 45 mins or so, and probably left them in there for 3 hours. Alternately, you can just leave them on a drying rack on the counter overnight. Either way, your kitchen will smell like baked goods and make you hungry.

Decorating: We used plain old tempera paints and a paintbrush, because we had it. I liked the sequins but Maya didn't. If you have a 3 year old, I would say to avoid glitter, but really, I'm kidding myself, because it was really fun and I think we'll be using it again this week. But if you are really type A, avoiding the glitter is a good idea. You will be glittery for a while.

*Just to be clear, in case you've reached the end and are still confused, the strip club comment is because of the glitter all over the floor, counters, and people in my apartment. There's nothing else strip clubby going on here.

It's a December tradition here on the blog . . .

2011-12-08T19:03:00.001-05:00

December (aka the best month ever) kind of slid right past me this year. We had the trip to Yale, the start of my new job, the assistive tech re-evaluation, training on my new job, and the most amazing fundraiser ever . . . and suddenly it's already Dec. 8th. I've got to get on the ball.

Here's why December is the best:
1. It can possibly snow in December. I am over-the-moon-crazy-excited when it snows.
2. December smells good. The air is crisp--outside it smells like snow and fireplaces and inside it smells like pine and cinnamon.
3. There is no prettier way to light a room than with a lit up Christmas tree.
4. It's basically the only month of the year when I bake. And then I have an excuse to eat baked things.
5. Giving people presents is super fun.
6. People are happier. I mean, they're a little crazy too (especially in retail arenas) but generally, people are just more merry.
7. City streets look like enchanted places when trees and balconies are strung up with lights.
8. Christmas carols sound like home.
9. My birthday is the week before Christmas, and I love the fact that everyone is really excited that week.
10. Christmas morning will always feel like the most magical morning of the year.

This year brings the added bonus that Maya is kind of old enough to "get it." Last year she was in love with Santa, but she still had no idea what his deal is. This year I think that if we talk about it enough she might actually understand. She's loving the tree, and the holiday crafts we've been doing (more to come on those tomorrow). It's really fun!

If you're new to the blog, you might not know that holiday cards are kind of our thing. We try to come up with something cute and different every year, and I love sending them out. Last year I shared the cards from holidays past---and I'm going to make that a December tradition. We'll do 2008- 2009- 2010 -and then this year's card (I can't wait to share it).

Without further ado, Maya's first ever holiday card (2008):

Yes, I really put her in a pot. Yes, it was really on the stove. She couldn't move, the burners weren't on, and she was (clearly) having fun. So don't hate mail me.

Happy December, everyone :)

Thank you

2011-12-06T20:45:00.001-05:00

In the past 6 hours Maya's fundraising goal has been met.

This has been amazing.

The texts, instant messages, Facebook messages and phone calls have been coming in, asking if we're watching the page, if we're reloading, if we see the numbers adding up.

Yes, we've been reloading. Constantly. Amazed.

Thank you.

Maya's fundraising page will remain up. Any additional funds raised will go directly to other children who are waiting to have their samples sequenced (not to larger, institute-wide fundraising). These are kids just like Maya, and they appreciate your support and generosity as well.

My contact at RGI called me a little while ago to ask if we would be ok with leaving the page up to catch potential extra funds for other kids and we were more than happy to do so. He also informed me that he had reached out to Dr. Yale to let him know that he should get ready to start sequencing. He was floored by the speed and generosity of Maya's network.

She's got a lot of people who love her and are cheering her on.

Thank you.

We've got some medical news (The conclusion)

2011-12-06T14:32:00.001-05:00

This post is a continuation of yesterday's post.

So, picking up where we left off: Six months ago I received a Facebook message from a blog reader which, after a few exchanges, put me in contact with a group called Rare Genomics Institute (more on them later). They wanted to know if we would be interested in having Maya’s DNA sequenced. I rolled the information around in my head for a few days before agreeing to the first phone call to discuss it all.

I was interested, but cautiously---DNA sequencing is the next (and maybe final?) frontier of rare disease diagnosis, but is pretty novel, and therefore comes with some uncertainty. It’s also not yet clinically available . . . meaning that we can’t just go to a doctor and ask them to order the test, we would have to be part of a research trial (which than raises some privacy questions). There were a lot of questions, phone calls, and emails.  We learned a lot, and our concerns were laid to rest. We decided to move ahead with figuring out whether we were a match for the research.

Over the next few months, I compiled medical records. I called hospitals and doctor’s offices, signed releases, and charts began to arrive. I read the files, kind of awestruck by the sheer number of appointments that we’ve had, many of which I have little to no memory of. I typed up a summary packet of findings, test results, in-office notations, anything that might be a clue. I traded emails with my contact at RGI, and later with the doctor that we would (hopefully) be seeing at Yale. He agreed that we were an interesting case (um . . . thanks?). And that’s what brought us to Yale last week.

At Yale, we met with Dr. Yale (ok, that might be a fake name), who went over my medical summary packet and talked with us (for nearly 2 hours). The good news was that he didn’t have any guesses as to what syndrome Maya has. (Yeah, you read that right. I hate new syndrome guesses—they stress me out and lead me to google the syndrome and read everything about it, then I cry, then I toughen up and accept it, and then 4-6 weeks later we find out that’s not what she has anyway. Exhausting.) We were in the exam room for nearly 2 hours, Maya circling around the room, pulling toys out of my giant toy bag and scattering them. Dave and I delivered another brilliant tag-team performance, alternating as one of us spoke with the doctor and the other entertained increasingly restless Maya. She wanted to be put on the exam table, then she wanted stickers, then she wanted to rip the paper on the table to shreds, then she wanted to get down, then she was throwing blocks. She kept sneaking behind the doctor’s chair to bangbangbang on the computer keyboard that was right at eye level. She was a little tornado, first cycling slowly but then with growing ferocity (and noise) as the appointment went from kind of long to long to too long. In the end, Dr. Yale thought that Maya was a perfect candidate for exome sequencing.

An aside on DNA/genome/exome sequencing:
Your DNA is made up of 6 billion base pairs. Current clinical genetic testing only looks at a very small portion of the DNA. Whole genome sequencing would look at basically the entire DNA of an individual, but is extremely expensive (although prices are rapidly dropping) and time consuming. Exome sequencing involves sequencing only the protein-coding sections (exons) of the DNA. These exons make up only 1% of the total DNA, but are believed to be responsible for about 85% of disease-causing mutations.

All people have genetic mutations, and most of these mutations are completely harmless. Because of these harmeless mutations, exome sequencing will turn up over many, many mutations, and scientists will have to work to figure out which ones are meaningless and which ones are possible candidates for causing Maya’s syndrome. They will need Dave & I to have our exons sequenced as well, so that they can compare her mutations to ours (ex. If Maya has a specific mutation and I have an identical one, it would be unlikely that that mutation is the source of her issues).

So, while at Yale we all had our blood drawn, the samples have been received and are in good shape, and now we wait.

This is the tricky part.

Someday, exome sequencing (and, likely, genome sequencing) will be routine tests that are available through a geneticist, covered by insurance, just like our microarray and karyotype were. Both types of sequencing have dramatically dropped in price, and the ongoing research efforts will hopefully demonstrate the necessity of making sequencing routinely available to insurance companies. However, it will likely be another few years (2? 5? 10? I've heard different guesses from different doctors) before that happens. With the help of RGI, we were able to find a doctor and a lab that can sequence our exomes, but there is no grant money that will cover our sequencing, because Maya's uniqueness isn't a perfect match for any of the ongoing funded studies with new patient slots available.

Bottom line: We have to raise the money to pay for the exome sequencing ourselves.

Dave and I are glad to have partnered with Rare Genomics Institute (RGI) in our quest to find a diagnosis. They are passionate about helping families with undiagnosed children attain DNA sequencing, and they were able to help us with some of the biggest challenges of the procees: screening to make sure we were good candidates, matching us with the doctor and the laboratory at Yale, and helping us to get the appointment (and to get it pushed up a few months). And now they have built a fundraising platform for Maya (and, thus far, two other children who are in the same situation).   Their idea is this: rather than having a family try to directly fund DNA sequencing (as families of kids with special needs are typically bleeding money to private therapies, uncovered medical bills, devices, etc) a crowd funding platform is set up. It allows many people to make small donations that will add up to fund the project.

We need to raise $2,500 for the exome sequencing (genome sequencing would have been six times that amount). RGI has set up a fundraising page for Maya, and she has already received some donations from within the scientific community (aka generous strangers who are interested in supporting genetic research).   When the fundraising is complete, the sequencing will begin. From there, it will likely be a minimum of six months before we hear about any potential findings.

We’re (cautiously) hopeful that this will be the beginning of the end.

A few notes:

If you choose to donate to Maya’s fundraising page, we thank you sincerely. You should know that all donations are tax-deductible and go directly to the funding of Maya’s sequencing project. The money will go to Maya’s fund at RGI, then will transfer directly from RGI to Yale. When the money has been received and confirmed by Yale, our sequencing will commence.
You may notice that we only need to raise $2,500, while the other children on the site are raising $7,500. This is due to the difference in prices at the hospitals that they are using. We are the first patients to go through Yale with RGI, and the costs associated with the Yale lab are significantly less than many other hospitals.
If you have a child who is undiagnosed and are interested in finding out whether RGI could help you with genetic sequencing, the best way to contact them is through the contact form on their website, here.

We've got some medical news (Part 1)

2011-12-05T14:44:00.001-05:00

I’ve been keeping a secret.

Back in July I received a Facebook message from a blog reader that set us on an interesting path, one that has the potential to lead to a diagnosis for Maya. I’ve been keeping it under wraps over the past few months, because we had a lot of learning, research, records gathering, conference calls, and appointments to get through before we could even decide whether we were a good fit for this project, and whether we were going to proceed.

Now we’re ready to proceed. So it’s time to explain it all.

As many of you know, we’ve spent a significant amount of time over the past few years (since January 2009, to be precise) searching for the source of Maya’s delays/challenges/ uniqueness/abnormalities. The doctors all agree, “something genetic” is at play here, but no one can put their finger on to what that something is. It’s been a long, tumultuous, exhausting road. She’s been through a variety of diagnostic tests and procedures, including: karyotype (normal), microarray (normal), FISH (normal), UBE3A sequencing (normal), brain MRI (normal), swallow study (normalish), ABRs—that’s plural (normal, then abnormal), behavioral hearing analyses-plural (normalish, normalish, normalish, normalish), EKGs-plural (mostly normal), echocardiograms-plural (normal). And those are just the medical tests that I can remember. Add in the countless appointments, the surgeries, the sheer number of doctors (we send holiday cards to all of them, and they take up a whole section of my address book) and, well, it’s a little overwhelming.

Maya is smart and funny. She is learning and growing and making steady progress, she loves school, she’s walking and making measurable gains towards talking, and overall, she’s a little delight. So, why keep searching for a diagnosis? Why bother? Why not just accept that things are unknown and move on?

Good question.

Part of me that has fallen in love with being undiagnosed. I love that doctors can’t make assumptions about Maya’s skills or limitations, because no one can presume to know what they are. No one can think “Well, the other kids that I’ve seen with this syndrome don’t talk, so she probably won’t either” or “Kids with this syndrome generally need to stay in specialized schools” or whatever. There’s a smugness that comes with walking into a new doctor’s office and knowing that they will be forced to listen to me just a little bit more closely, because thus far I’m the authority on the Syndrome of Maya. But there’s a flipside, too.

The flipside is that I feel a little ridiculous when I’m asked for her diagnosis and have to say “unknown genetic syndrome.” And you’d be surprised how often I have to say it. School paperwork, insurance phone calls, doctor’s appointments, signing up for special needs events, introducing myself to other special needs parents. At the playground. In the diner. One time a older woman was so taken aback after I said “unknown genetic syndrome” that she actually paused and then sputtered “Oh . . . well, um, have you taken her . . . I mean . . . which doctors have you taken her to?” (Like I was going to run off our list of doctors to a stranger at the diner.) People just don’t understand how, in New York City, with doctors and hospitals generously sprinkled everywhere, a child can be diagnosis-less. A mystery.

And being undiagnosed comes with complications and issues more significant that just my feelings of sheepishness. When I file claims with our insurance company, the generally meaningless diagnosis of “global developmental delays” doesn’t get us very far. GDD can describe a child with a small vocabulary or with no words, a child who was a late walker or who was a very late walker or who still doesn’t walk. It’s too broad, too nondescriptive. To the insurance company, it’s kind of useless—a catch all for kids who don’t seem to have real medical issues. It doesn’t paint our picture. Insurance denials arrive in the mail by the bucketful.

On a similar bureaucratic note, when Maya turns five we will enter a new chapter in the school system (right now we’re in the preschool system, but turning five transitions us to the big league). By the time she turns five, we will struggle to find the best school placement for her, and fight to ensure that she is granted the therapies and services that will assist her in school. Can we get these services without a clear, medical diagnosis? Yes, in theory. Is it more difficult? Oh yes. Yes, it is.

Finally, but most importantly, there’s the most compelling reason to find a diagnosis. Undiagnosed life . . . well, it can be dangerous. Some syndromes come with complications that develop over time . . . seizures that don’t start until puberty, degenerative hearing or vision loss, chemical imbalances. It would be helpful to know if that stuff is on the horizon. Also, there are syndromes that are now treated with preventative medications, vitamin therapies, and all sorts of ways to be proactive . . . if you know the diagnosis. If you know what you’re up against.

And so, we kept searching, periodically. Taking breaks, but returning to Google and online forums and genetic websites. Talking to other families, talking to doctors, keeping an eye out.

That brings us to this summer.

To be continued . . . the second half will come tomorrow.
Added: I'm not trying to make a cliffhanger here, the story is just too long for one post.

Pull up a chair . . .

2011-12-03T13:58:00.004-05:00

As many of you know, we had our Assistive Technology re-evaluation with the DOE yesterday. The point of this meeting was to determine, after a 6 week trial with a TechSpeak, whether she should stay with the TechSpeak or possibly move to a high tech device.

I couldn't figure out the best way to post an update about it. I think people often say "The meeting was a fight", but unless you've ever been in one of these DOE meetings, it's hard to understand what that looks and feels like. And if you have been through one of them, you know that it often is so long and twisty that afterwards it just feels like a blur and is difficult to re-tell. So the best way I could think of to tell you about the meeting was to try to take you inside and show you, so you can see for yourself, rather than just summing it up. Here it is, in all of its disjointedness . . . scenes from inside the meeting.

Maya sits in a little chair with the TechSpeak in front of her on a table. Sarah, her lovely speech therapist, sits next to her in another tiny wooden preschool chair, holding a big bag of farm toys (barn, tractor, animals, etc). Britney, the DOE-assigned assistive tech evaluator, sits behind Maya, peering over her shoulder, watching to see what buttons she’ll tap on the TechSpeak, notepad poised on her lap. I stand in the doorway with Maya’s teacher, surveying the scene, trying to watch through both my eyes and Britney’s eyes . . . and realizing that those two sets of eyes are seeing very different things.

“I want to see her choose between three items,” Britney says, pen in hand.

“Ok,” says Sarah, “Maya, do you want the sheep, the cow or the pig?” She holds up the three plastic toys. I hold my breath.

Britney watches the back of Maya’s head turn slowly from side to side as she scans the TechSpeak, conceivably looking for the sheep, cow or pig. Her head stops moving and she makes a small nonsensical sound. Her finger reaches for a button—zebra! He hand starts moving faster, tapping out- zebrazebrazebragiraffe. Britney takes notes.

I can see the front of Maya’s face, so I could see her look at the cow and the sheep and turn away, looking for something more interesting. I understand Maya’s sounds, so I knew that the little “hmph!” noise that she made meant something silly was coming. That’s the noise that she makes when she’s kind of delighted by something. And I could see her watch Sarah for a reaction when she said zebra . . . and then smile sneakily as she said zebrazebrazebragiraffe.

I see a silly, naughty, clever girl. Britney sees a girl who didn’t understand the question.

-----------------------------

Britney makes the case for keeping the TechSpeak. She makes good points, her arguments are strong. She says that Maya isn’t yet using the device to the fullest of its capabilities, and that’s true. For example, she’s not making spontaneous observations (like I see-Billy, a two button combination) during morning circle. This is where Maya’s teacher jumps in and said “But the thing is, no three year old would really say that, you know? If we ask who is sitting in the circle, Maya will just say Billy, not I see-Billy.”

Britney talks about different ways the TechSpeak can be programmed, different uses for it in the classroom. She tries to spin the limitations of the device as simply poor programming choices---insisting that if it was just programmed differently, there would be different, possibly more useful, sentence making possibilities. She has a lot of pro-TechSpeak arguments. I zone out. It all sounds like I’m-in-charge-I’m-making-this-decision-I-know-what-is-best-you’re-keeping-the-TechSpeak-and-here’s-why.

Then she changes tactics and speaks about the challenges of using the Dynavox Maestro (the high tech device that would be the next step if she decides the TechSpeak is too limiting). She speaks (at length) about the cognitive skills needed to work a high tech device like a Dynavox. “To use this, a child needs to be able to understand categories. If they want milk, for example, they have to be able to tap I want, then remember that milk is in the drink folder and tap drink, then scan the page to find milk, then tap the top bar to hear I want to drink milk and then tap the home button to get back to the main screen,” she was holding up her hand, ticking one manicured finger off for each button tap. “That’s a 5 button sequence, and the child needs to remember where the different categories are.”

“She could do that,” I say, without hesitation. “I mean, I think she can . . . I’m pretty sure,” I add, in my head.

Britney sighs and looks to the teacher and the speech therapist.   The teacher nods, yes, Maya is smart. I barely resist the urge to hug her.

Britney takes out the Maestro that she’s brought with her and starts to fiddle with buttons, turning it on and setting some things up for Maya to see. In a very prove-it-to-me tone, she tells me that she wants to see Maya form a 3 button sentence--- I want- to drink- milk.

I show it to Maya, who is only slightly, cautiously interested. Mostly, at this point, she’s trying to get past me and into the hallway. We’ve been in the room for over an hour. We all want to escape, I think, but Maya is the only one actually trying to put that plan into action.

Tears fill my eyes. I force them back. I will not cry during this meeting. I will not.

“She’s not going to do it,” I say.

My frustration during this meeting is that, more than anything, I feel like we are assessing Maya’s obedience, rather than her ability. No, she will not tap that I want-to drink-milk because, well, she doesn’t want to. She doesn’t want to drink milk and she doesn’t want to tap a sentence and she doesn’t want to be in this room anymore. She is 3 and she is stubborn and she is done and she doesn’t want to.

Britney is insistent that she only gives the Maestro to children who demonstrate that they are capable. Children who are able to sit in the evaluation, watch someone model a sequence a few times and then demonstrate that they can do it. That shows that they understand and are capable of managing the device.

I get the feeling that she doesn’t give these to many 3 year olds.   But I don’t really care.

I want it. I want to see Maya with it and I want to decide for myself if it’s a fit, with the help of her teacher and therapists, who believe in her and will put in the time and effort to give this a fair chance. I want it in Maya’s hands, and I want to see if she has the motivation and ability to learn how to use it. I want to see if this can be her voice.

No offense, Britney, but over my dead body are you going to be the one to make that decision, unchallenged, after a few hours in a hot, overcrowded office with my kid.    That’s not how this is going to go down.

---------------------

The meeting is long. Time is spent observing Maya and debating-more debate than observation. Britney talks the most and I talk the second most and the teacher and therapist and mostly quiet, which is good because their words seem more powerful, since they are so few. They request a six week trial with a Maestro. If it’s not a fit, we can give it back at the end of the trial period and switch back to the TechSpeak-no harm, no foul, at least we’ll know for sure.

Britney does not love this idea, and says that we’re trying to move too fast---the Word Book is relatively new, the TechSpeak is relatively new, we should just stay focused and stay where we are. I argue with her about vocabulary size and limitations and not meeting needs. She understands my points, but disagrees. I understand her points, but disagree. Maya’s teacher mentions, again, a trial period with a Maestro. We go round and round and then Britney says . . .

“Well, if I did agree to a trial with the Dynavox . . . “ and I don’t hear the end of the sentence because I know that she will give it to us and the relief is immediate and overwhelming. I nod along with whatever conditions she is laying out. Tears are in my eyes again and I remind myself that I will not cry here.

----------------

The details are arranged, date for delivery of the device, date for re-evaluation. We do paperwork and print things and wait for faxes to go through and clean up toys. Now that we aren’t arguing anymore, we are pleasant. Britney offers, “You know, we all want the same thing. We all want something that will work for her,” and I know that she means it and she’s a nice person. But I still resent the fact that she has the power to make these decisions, and that I’ve spent two mornings this fall trying to prove to her that my kid is smart and deserves a chance with a device.

-----------------

I am crying before I get to my car. The silent type of tears that fill up my eyes and overflow and spill down my cheeks without any effort or noise, they just come and I can’t hold them back any more. The beauty of the sidewalks of NYC is that so many people are moving so fast that no one notices a crying lady walking down the block—and if they do, they keep to themselves anyway. Tears of relief that the meeting is done mingle with tears of anger that I had to fight so hard and tears of anxiety at now having to teach Maya this device only to re-live this meeting at the end of January.

The week that nightmares are made of

2011-11-28T19:53:00.002-05:00

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

2011-11-27T14:48:00.000-05:00

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

2011-11-23T11:52:00.001-05:00

(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

2011-11-21T10:44:00.000-05:00

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

2011-11-17T19:53:00.000-05:00

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 . . .

2011-11-15T19:40:00.002-05:00

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.

2011-11-11T15:32:00.002-05:00

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

2011-11-08T20:42:00.000-05:00

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

2011-11-07T20:45:00.000-05:00

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 . . .

2011-11-06T07:26:00.000-05:00

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

2011-11-03T13:03:00.000-04:00

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

2011-11-02T08:08:00.002-04:00

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).

I will not be her limiting factor

2011-10-27T11:56:00.003-04:00

At the risk of becoming a one trick pony, I'm going to hesitantly start another post on communication.

Exactly a month ago, I posted about finally making the leap and learning how to use BoardMaker. The timing wasn't accidental. Maya had been toying with the iPad for the past 8 months or so during her therapies.   I had made a few picture cards here and there, but without much direction. As the summer rolled on I told myself "When school starts, we will get a system in place". It didn't seem to make much sense to create a system on my own when preschool (filled with lots of people-who-know-how-to-communicate-with-nonverbal-little-kids) was right around the corner.

School started. I waited for her to find her footing. I spent a few hours learning BoardMaker. I met with Maya's teacher and speech therapist and saw the types of boards they were using at school. I made some boards at home.

I puzzled over the fact that having a finite number of words available meant that I was chosing everything that Maya was able to say. I hated that. It didn't seem fair.

I ~~made~~ keep making the Word Book. With it, Maya will flip through the pages, pulling off words and handing them to me, eyes lighting up with delight when I say "alligator?" or whatever word she's thinking. She understands that the book lets her get her thoughts out. She plays with the PECs (picture cards). She's starting to learn how to point her way through "I want" sentences. It's exciting-beyond-words that she's able to tell us stuff.

But it's killing me.

Something about seeing her latch onto this book so quickly (and I really mean "latch on"--literally and figuratively---she's taking the thing in her crib at night . . . don't take my words away, mommy, I might need them tonight) is simulatenously delighting me and breaking my heart. She's so young and teachable and interested, and I've realized that the limiting factor is her communication isn't her . . . it's me.

Sure . . . it's her mouth's fault that she can't speak words, but it's my fault that she can't communicate.

She doesn't sign much . . . because I haven't followed through with continuing to teach ASL, since her signs are garbled and while I understand them, others won't. So I just kind of gave up on signing, I guess. It wasn't a conscious decision, it just . . . happened. She started making sounds and gesturing and taking my hand to lead me to things and most of the time, I understood her. So it was easy not to use PECs regularly, or any real system----she understood me and I understood her and it led to kind of a lazy complacency.

Now she's starting to use the PECs, and starting to use the iPad more (it's taking me time to upload pictures and format the program, but we're using it in baby steps) and she's learning. She's interested. The learning is slow, but it will come.

I give her something new, and she tries to learn it.


I'm the limiting factor.

If I don't make-it-for-her/give-it-to-her/customize-it/set-it-up then her communication is limited. And it's limited because of me.

This line of thinking . . . well, it's not so good. I've been throw into a kind of emotional spiral over this . . . whatever I'm doing, I don't feel like it's enough. But it's certainly enough to keep me in front of the computer day and night, googling and searching and emailing. It's enough to cut into my sleep. It's enough to obsess over. It's an unhealthy place to be.

And then I realized that I can turn some of this negative energy from self-loathing into just plain old loathing (and not that any loathing is ideal . . . but of those two, I'd take the latter). I am angry at "the system" again.

I want Maya to get a communication device. A real one, a big one, one that she can gently be exposed to now and grow into and use for years to come. I want it soon.

I want it because Maya deserves it.

But, somehow, it's not my choice. I can refer her for evaluations (done). The evaluators will recommend the product that they think is best for her (which I've found to be a gross misrepresentation of her ability). I can protest . . . but, well, you know . . . I'm "just a parent". I'm not the professional. How could I possibly know more about this stuff than the professional? The device that she receives from the Board of Ed will most likely just be the one that the professional recommends, and then we wait while a year goes by. A year! In a year I think she could make some very nice slow and steady progress with a device.

I am educating myself. I am emailing people-who-know-things about augmentative communication*. I am leaving messages with representatives from the big companies*.

I am thinking that we will likely try to pursue getting a device privately, because why-should-Maya-have-to-wait-for-the-Board-of-Ed-to-believe-that-she's-ready?   I believe that's she ready. Or at least approaching ready at a speed of faster-than-a-year-from-now.



I will not be her limiting factor.

And I won't let the professionals** be her limiting factor, either.

And, just because I can't resist sharing the cutenes:

Roar!!!! This little dragon can't wait for Halloween.

*To this end, if you know anyone who knows about augcomm, has a child with a device, works in assitive technology, etc, please email me: uncommonfeedback@gmail.com

**Just to be clear, "the professionals" are not the people at Maya's preschool. We love the people at Maya's preschool. "The professionals" are the city evaluator people/BOE.

My kid is nonverbal, we use an iPad, and I still didn't like that piece on 60 Minutes

2011-10-24T19:24:00.003-04:00

Last night there was a piece on 60 Minutes that has everyone in the special needs community talking (or at least tweeting and posting on Facebook). The segment, which can be viewed on their website, was about nonverbal kids who can use iPads to communicate.

Wait, no it wasn’t.

It was about kids with special needs, primarily nonverbal, who can use the iPads to communicate and for other educational purposes.

No, no. That’s not quite right either.

Ok, for real this time. It was called “Apps for Autism”. And, frankly, that pitch had me annoyed before Lesley Stahl even began her introduction.

Don’t get me wrong—I’ve got nothing but love for children with autism, and their families. I’m sure that many of you reading this right now are a part of the autism community. However, I think that “autism” also has a magical buzzword factor that “special needs” is lacking. I would have greatly preferred a piece about “Apps for Special Needs” or how about just “Apps for Communication”? “Apps for Special Education”? “Apps for Communication, Motivation, Special Education, and then a Celebration”? I mean, I’m just spitballing here, but if I could come up with those gems in less than a minute, I bet the good folks at CBS could have pitched a more inclusive, although possibly less buzzworthy, story. It would have been appreciated by the throngs of parents, like myself, who have similarly adorable, nonverbal kids that don’t fall on the spectrum.

So, that was annoyance #1. Number 1? Oh yes, there are more.

The first segment showed a young man named Josh (27 years old) using the app Proloquo2Go (P2G) on an iPad to answer Lesley Stahl’s interview questions. (This is the app that we have for Maya, by the way, although she’s a bit too young to fully use it—it was pretty cool to see an adult move through it so quickly.) P2G provided Josh with a voice—he could order food at a restaurant, he could answer interview questions, he could talk to his family.

What a fantastic gift. Seriously.

But the annoyance #2 actually came right before the scene in which Josh was using the iPad. The camera focused on Josh’s hand, pointing at letters on a laminated sheet of paper, and the voice over implied in the pre-iPad days, Josh’s only way to have a conversation was to spell out his thoughts, one letter at a time. Lesley then says “For the past year Josh has been using an Apple iPad as his voice.”

Are we to believe that for 26 years, Josh has used only a (poorly) laminated paper keyboard, and then one day he got an iPad and it changed everything?

I damn well hope not.

If so, I am irate on his behalf. I really, really hope that he was able to use PECs, or a ProgressiveCommunicator or a TextSpeak generator ---- clearly, he can spell, and these devices are all cheaper than the iPad. Please, tell me he had something. Even just a typewriter.

On the flip side, if he did have a device before the iPad (and I do believe he did---did you notice that the laminated paper was in QWERTY format? This kind of implies keyboard use), then I ask----What’s the deal, 60 Minutes? This seems like mighty questionable reporting. I get it---you’re selling the iPad as "The Solution" (this segment directly followed a large piece on Steve Jobs, by the way). But it seems like you’re heavily lying by omission, to say Josh had to fingerspell or act out his thoughts . . . until THE IPAD came to the rescue . . . when really, many of us who have nonverbal kids are raising an eyebrow and thinking “Really? How can that be?”

Maya has an iPad, and I love it. I look at it and I see potential—new apps roll out, and we can buy them and try them and see what works. However, when she’s fully ready to use an AAC device, I want her to have a true communication device (like this one, from Dynavox). Why? Well, those devices are created by speech and linguistics people, fully mapped out and set up for grammar and communication (and really, I’m just repeating what my AT consultant told me. I don’t know much about that stuff yet, because the time has not come for us).

Mark my words, I am not an iPad hater. I think the iPad has a place in education and in communication. I think that nonverbal children should have early access to an array of items (from PECs to the devices that I mentioned above to iPads) so that their caregivers can find the best way to give each child a voice. I am very, very grateful for our iPad. But the way this piece touted the iPad as the tool for communication, counting, motivation, etc, was a little off-putting. It seemed less like journalism, and more like a commercial.

At the same time, I’m glad it ran. I hope that the segment was able to show a large audience that nonverbal people are much, much smarter than meets the eye. I watched that little boy show off his huge receptive vocabulary and love of opera and I couldn’t help but tear up and think of Maya. It’s easy for us to know how smart our kids* are, and I like that technology will make it easier for them to show off their skills as they encounter new people.

*our kids = kids who struggle to express themselves in conversation, regardless of diagnosis

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

2011-10-20T19:51:00.001-04:00

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.

Maya get surprised by her favorite song (video)

2011-10-18T14:25:00.001-04:00

Maya has very specific musical tastes. I'm happy listening to pretty much anything (techno aside), but Maya will yell "Done!!!" if I put on somone that she's not interested in.

Over the summer, her favorite album (by far) was Sigh No More (Mumford & Sons). That CD ended up in my car, and when she got whiny or restless on long rides, it would instantly quiet her. Her face would light up. But after a few months, I could literally Sigh No More no more.

Luckily, she has a new favorite. At the moment, it's not a favorite album, it's a favorite song. And if you wonder how I can tell what Maya's favorite song is, I'll let her show you herself. You can't miss it:

If all you see is a black square, click on it a few times and the video will appear.

*The song is "Someone like you" by Adele.

How we talk with our (mostly) nonverbal girl

2011-10-14T20:17:00.001-04:00

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.

Introducing the Word Book! (Or, how to make your own communication book)

2011-10-10T20:50:00.003-04:00

Recently, I've had communication on the brain. The time has come to implement a system of communication that will let Maya "speak" more easily to those around her. We've tried picture cards, picture boards, and the iPad, but nothing has really stuck. All of the systems become cumbersome, or are used inconsistently. Finally, it seems like we're making solid progress . . . Maya has been a virtual chatterbox this weekend, thanks to a communcation book that anyone make at home, with minimal supplies.

Last week I visited Maya's school twice. Both times, I was focused on communication (and I also got to spy on a PT session, which was fun). On Wednesday, I visited her teacher and speech therapist, taking photos of the communication boards that they have been using with her at school. Here's a picture of a board that she uses while playing with dolls at school:

Pretty basic. She points to things, the teacher will say them and encourage her to make the starting sounds of the words.

The problem that I had been having at home with the boards is that it's really hard to get the right words on the board. The pressure of selecting the words was enough to make me come undone. I mean, when I make a board I'm literally chosing every single thing that she can say. Imagine if you sat down to play a game and were only allowed to use 20 words, which had all been predetermined by someone else. I hated that my word choices would limit her. But that changed on Thursday.

Thursday I returned to the school to attend a workshop on increasing communication at home. The workshop was mostly useless, except for 1 key point. Velcro. At one point the presenter held up a little communication board that had velcro squares on it---and I had a memory flashback to seeing a communication book lined with velcro months ago, so that the board itself is dynamic. This was what I needed---a board that could easily shift and move, with many words at her fingertips. So I got to work.

Note: I'm not inventing the idea of velcro and communication books---many commercial ones exist. But you can make this at home, and it will be cheap and easy. When I googled how to make your own communication book I found nothing useful. So this is what I did:

Step 1: Start with the basics. I made my picture cards in BoardMaker (which makes life easier---but you don't need it. You can do this with photographs or clipart, too) and put velcro on the back of the squares. For the book, I'm using a 1" binder with velcro strips. I figured that there are certain basic words that she would almost always need, so those remain on the cover of the binder:

Step 2: Make the word tiles and put them in the binder. I'm not going to lie, making the tiles is a bit labor intensive, but it's the type of mindless work you can do while you watch TV. The tiles are stored inside the binder on old pages from a photo album (they are more sturdy than sheets of paper). They have velcro running across the page, like the cover.

We went to a hay ride/pumpkin patch on Sunday, which explains why we're talking about skeletons.

Step 3: Organize. Clearly, the words above aren't organized. I'm working on that now (or will be working on it after I finish this blog post). I'm going to make pages for "art", "people", "food & drinks", etc.

I've also learned (in the past 3 days) that these littles tiles will get lost--everywhere. Initially this wasn't a problem, but as the number of tiles increases I won't be able to figure out what words she's lost. And losing a tile renders her incapable of saying that word. So it's a big deal.

To that end, I'm going to use a permanent marker to label the place under the tile, so that when the book comes home from school all jumbled up I can reorganize and see if any words need to be reprinted.

The space under the "Maya" tile is labeled.

Step 4: Using it. Maya caught on right away, and seemed to grasp the magnitude of the system---I have words! She had a massive breakdown when I had to take the binder to buckle her into the stroller, and loves to pick up the words and show them to me. She quickly started pointing to 2-tile "sentences", which was great to see.

Notes:
-Maya learns the cartoon pictures pretty easily. If your child is a more concrete thinker, photo tiles might be better.
-I like this because she has all of the words! She flipped through the pages today several times, to remind me that she went on a "pony ride" and tell me "Grandpa". I don't know why she was thinking about Grandpa, but if she only had a "playground" board in front of her at that moment, she wouldn't have been able to share that thought with me at all.
-We're working towards the higher tech versions of this---the iPad and AAC devices. But this is a solid start, for now.

Enough of my talking . . . let Maya show you how it's been working for us:

*I would greatly appreciate any and all tips, tricks, feedback, etc. If you have ideas on how to use/improve the Word Book, please share them!

After the Airport: Reflections, and the Boats of Acceptance

2011-10-04T19:52:00.004-04:00

A year ago I wrote Amsterdam International, about 6 months after I had left the airport myself. I was writing with enough emotional distance from my darkest point (a period of daily-tears-during-naptime, and racing-mind-while-lying-in-bed-at-night) to speak somewhat clearly about that rough transitional time, but while the memories were still fresh (and jagged) enough to hopefully do them some justice. I was attempting to say “This is the worst thing that I’ve ever gone through” and “If you hate life right now, don’t worry, you’re not alone” and “Someday, you will suddenly realize that you haven’t cried for a few days, and you will see that you’ve begun to (ever so slowly) crawl your way out”.

I hoped that it would spread, and reach others who were going through their own dark times. And then I watched, amazed, as it did. A year ago I was awestruck as people (besides my mom) visited the blog, and in a matter of 3 days my daily page loads jumped from 67 to 421 to 892. I felt like I had contributed something, and at a time when I was feeling like I had lost some of my own identity (having left my career to manage therapies and appointments), that gave as much to me as any of my words gave to anyone else.

At the time, I was already grateful to be out of the airport, and I’ve spent a lot of the past year trying to spend more time enjoying the present, and less time thinking. (As it turns out, life is sometimes more fun with less thinking.) There didn’t seem to be much point to trying to envision what our future would be like in Holland, or worrying myself with particulars. I had already accepted that life would be different than the one that I had previously imagined, and I decided that while we would clearly have more struggles, we would also have more celebrations . . .and over the past year, we’ve had some great celebrations. First steps, first words, first bizarre adoration (hello, vulture), first glimpses into how smart and funny our girl is . . . we celebrate a new food with the gleeful smiles that some people reserve for opening presents on Christmas morning.

And I’ve enjoyed this about Holland-the joyful appreciation of minor things. I’ve come to welcome the slow pace of changes . . . by the time we got to walking, there wasn’t a little mom voice in my head lamenting, “Oh . . . my baby is growing up too fast! Slow down!” . . . there was just “Go! You can do it! This is amazing!” Progress has been made, and savored. In the airport, we were in a rush---a rush to fix things, a rush to change things, a rush to somehow alter the course of our unplanned reality-----but outside the airport, in acceptance, there is a peaceful happiness. In acceptance, things are . . . well, things are pretty good.

But I didn’t realize that this past year would teach me an unexpected thing about acceptance. There seem to be stages of acceptance, both as clear and as winding as the stages of grief had been.

Stay with me as I leave behind the airport analogy and switch to a harbor town. (I know, I know---Another analogy?! (eye roll) but it’s the best way I can think of to explain this.)

The Boats of Acceptance

In this harbor town, the families with “typical” kids live on the land, and the families with “special/different/whatever term you’re cool with” kids live on the water. The families who are new to all-things-special-needs, who struggle to see which world they fit into, who still spend a lot of time in depressionangerdenialbargainingwailingpain . . . they sit on the beach. Not quite on land, but not ready to brave the water. And when they’re ready, they get to acceptance. And then they get their boat, to join those already in the water.

As best as I can figure, acceptance starts as a canoe. It’s tipsy, easy to capsize---but you’re so happy to be free from the limbo of the beach and enjoying the water that you don’t care. You paddle around thinking “This is working! I’m on a boat! I’m happy! This water isn’t so bad! “ But every so often you hear people playing on the shore and turn too quickly to see them----or you gaze too long at some kids playing in a soccer game close to the shore and you forget to row----and your boat wobbles and shakes and takes in a bit of water and you think that maybe you need to take a rest on the beach again. Just for a little while.

It’s hard to learn to live on a boat.

It takes some time, but you become a champion rower. You can navigate turns, go superfast or smooth and slow, and the shore hardly distracts you anymore. You think to yourself “There are great things out here on the water. Those land people miss magical moments at sea.” You’re ready to drop your anchor and claim the water as your home.

So, you get a houseboat.

The houseboat of acceptance is strong and sturdy, built to last through the stinging winds and soaking hurricanes that you’re smart enough to expect in the years to come. And the best things about having a houseboat, docked securely at the pier, are the neighbors. You visit their boats and they visit yours, and you talk about the best places to buy rope and other boating things. So many people you might not have met on land, happy to help with ship repairs and barnacle scrubbings. You all have friends on land, but something is different among the camaraderie of people who live on the water---there’s a lot about boat living that the land folks just can’t fully understand. Life on the houseboat is good, you watch the tides come in and out and feel secure and proud . . . until you have to venture to land.

Going to land . . . well, it sometimes sucks.

You’re invited to a birthday party, or decide to take your kid to go visit the new museum, or whatever. You have high hopes. You’re ready to visit with old friends, to catch up. It only takes a few minutes to start noticing all the stuff that’s happened on land since you’ve been gone (they have flat screen tvs now? computers are wireless? what the hell is Twitter?) and suddenly all of the progress that you’ve made on the boat, the stories you were so ready to tell---they all seem very small. So small that you fearfully suspect the land people might put on too-big-smiles and too-cheerful-voices when they say “A new generator? That must be so fantastic!”

You may not be ready to be so close to land just yet.

But you want to shift from land to water, gliding from one to the other, at home on both, like the tides. The houseboat of acceptance, well, it may be home (temporarily? for a few years? forever?) but you watch the waves crash on the shore, stirring up the sand, and it makes you think. The water kicks up the sand and plays with the shells, lingers a bit, and then purposefully moves back out again. Maybe you could, too. Maybe you could join the land folks, move among them, and then return to the water . . . without the weight of misunderstanding/pity/envy/grief?

This is where a year has brought me. The houseboat is easy, the land is still sometimes hard (although there are easier days and harder ones) . . . and I’m ready to start rolling onto land with the waves (some days). I’m not sure how long it will take me to teach my body to switch from sea legs to land legs, and my visits might be short at first, but I’m going to go slowly. I’ve got a lifetime ahead of me to learn. As it turns out, the final, hardest to obtain, boat of acceptance is starting to reveal itself to me, and I don’t think it’s a boat at all.

I think it’s a surfboard.

Rock the vote

2011-09-30T21:54:00.003-04:00

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

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

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

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

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

BUT WAIT!

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

BUT WAIT! (again)

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

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

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

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

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

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

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

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

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

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

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

If you laughed with us . . .

And shared in our frustration . . .

And worried with us . . .

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

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

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

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

. . . well, thank you.

Thanks for joining in.

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

Please and thank you.

(Voting closes Oct 15th.)

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

2011-09-27T14:44:00.000-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Computers & Camels

2011-09-25T20:07:00.004-04:00

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

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

So, win-win.

Here's the set-up:

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

Keyboard before the stickers:

Keyboard after the stickers:

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

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

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

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

A good time for everyone!

Well, almost everyone.

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

Separation anxiety has its perks

2011-09-23T10:51:00.000-04:00

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

2011-09-21T10:22:00.000-04:00

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

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

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

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

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

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

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

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

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

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

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

Yet.

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

We're terrible apple pickers

2011-09-19T10:44:00.000-04:00

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

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

This year, ever so slightly less.

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

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

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

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

And fell.

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

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

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

I love hanging out with my cousin!

A good time was had by the whole family :)

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

News in brief & new giveaway winner

2011-09-15T19:09:00.000-04:00

-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!