Sunday, December 30, 2012

Top 10 of 2012

A year in review: I present to you the top 10 blog posts of 2012, as determined by number of comments per post (excluding contests).  It was fun putting this together, reminiscing about the year that's gone by.  I couldn't resist re-reading them all and remembering.

10. Talking in '12: In which I reflect on years past and set a goal for 2012.

9.  Stop telling me that "things are going to be so hard": In which I lose my patience for, and speak bluntly about, the people who seem bent on pointing out a cloud around my silver lining.

8. The search is over. We've found our communication solution.:  In which we discover the app that will become Maya's voice.

7. Necessity is the mother of invention:  In which we create a makeshift solution to prevent accidental hits on the iPad.

6. Irreparable Harm:  In which we join with two other families to take legal action and protect the communication app that our children are using.

5. Stand Up: In which I spread the story of another special needs mom who was asking for help in fighting on behalf of her daughter.

4. Maya could be a lot of things . . . : In which we share the news that Maya would become a big sister before the year was through.

3.
The Mom I Would Have Been: In which I reflect on, and mourn the loss of, the mom I
would have been if my situation had been “typical.”

2. David v. Goliath, AAC style: In which I tell the story of the lawsuit that was attempting to eliminate Maya’s voice.

1. The Silencing of Maya: In which Maya’s communication app is removed from the iTunes store, and it becomes time to fight back.


On to 2013 . . .

 

Thursday, December 20, 2012

Winner!

The winner of the 3 inch Time Timer is . . .

Comment #38:
Blogger


Rebecca said...
I like time Timer on facebook!
December 13, 2012 7:42 PM
 
 
Congratulations Rebecca!  Please email me (uncommonfeedback@gmail.com) to claim your prize!
 
Delete

Tuesday, December 18, 2012

Like the wind

Maya's progress is . . . interesting.  Not typical, not quick, not slow and steady . . . it's often invisible---but wind is invisible too, and that doesn't make it any less real.  Her progress is a secret---I'm never quite sure what she's observing, what she's learning, what her inner narrative is. Internally, I imagine that she's learning new things and making new connections everyday, but externally the growth comes in fits and starts----nothing, nothing, nothing, then suddenly something new.

And in the past week we've had 2 big somethings new.

First, Maya said Mommy. As you may imagine, hearing it after 4.5 years is a pretty sweet sound.  Prior to this she could say "Mama" (and "Daddy"---of course that came first, because she adores her daddy) but not Mommy.  Suddenly, a weekish ago, her mouth just . . . cooperated. 


They had a field trip to Santaland that day.

Second, she can spell her name, which is pretty great. It's another indication that reading and writing will come, which is simply invaluable for a kid who won't be able to speak so clearly for a while. All the cool kids text instead of talking anyway, right?  (She needs some scaffolding with her name still, but it will come independently, soon I think.)





And, just so that we keep things balanced, here's a picture of Will that I took this morning :)

11.5 weeks old, making his own progress during tummy time.
 
 
 

Thursday, December 13, 2012

A Giveaway!


Who doesn’t love a holiday giveaway?  I see my Facebook friends sharing photos and liking posts all over the place to enter giveaway contests, and I may have joined in a few myself.  Many, though, I ignore, because I know that if I won the item being given away it would just end up collecting dust. 
 
But not this one!
 
As long-time readers here know, I don’t give away a lot of stuff.  I don’t want to endorse products that I don’t actually use, and I don’t want to seem like I’m working for a company or selling something.  When I mention a product by name on the blog, it’s only because I like it, I use it, it works, and I think that it might be useful for some of my readers. Back in March I mentioned one such product-the Time Timer.
 
 
 
The Time Timer is a clever timer with a large disappearing red section that shows the amount of time left for an activity.  It provides a clear, visual representation of how much time Maya has left in an activity, before a transition, how long something has to cook for, etc.  There are really a ton of different ways to use it.  This (short) video gives a bit more information about the Time Timer:
 
 
 
 
 
The folks at Time Timer have generously donated a 3” TimeTimer to give away to one lucky reader.  I love the fact that it has a cover that flips over the top---and so does one of our speech therapists, who tosses hers into her big bag-of-tricks that she carries from session to session.  The 3” timer also has the same optional audio alert that our 8” timer sounds when the time is up—a short, clear 2 beeps, not a loud ring (which can be a bit jarring for some kids).
 
Here’s how we use our Time Timer at home:
     -time left on an undesirable task
     -time until we go _____ (wherever we’re going)
     -cooking
     -time-outs
     -time left until we need to clean up (or other transitions)


(back in March with our 8" timer)

If you’re a parent, a therapist, a teacher, a grandparent, a babysitter—basically, anyone who is around kids, there are a ton of ways to use the Time Timer---and now you have a chance to win one for free!



Giveaway Details: Entries will be accepted until midnight (EST) on Weds, December 19th, and a winner will be announced on Thursday, December 20th.  Winner will be chosen from the comments left on this blog post (see the various ways to enter, below) using this random number generator (random.org link).  Irrelevant comments (like “Thanks for the giveaway”) will not be counted as entries.  If you do not complete the mandatory entry, your other entries won’t count.  If the winner doesn't claim their prize within 48 hours I will pick another number.

Here's how to enter:  (you can enter up to 5 times)

**Please remember to leave a separate comment below for each entry, and please remember to include an email address so that I can contact you if you win!**

Mandatory Entry:  You must complete this entry to be entered in the contest.  Go “like” Time Timer’s Facebook page (here).  Then, leave a comment on this blog post that says “I like Time Timer on Facebook.”

Optional Additional Entries:
     -Follow Time Timer on Twitter (@TimeTimer).  Then, leave a comment below that says “I follow
      Time Timer on Twitter.”
    
     -“Like” Uncommon Sense Blog (here) on Facebook. Then, leave a comment below that says “I
       like Uncommon Sense on Facebook.”

     -Follow us on Twitter (@UncommonBlogger).  Then, leave a comment below that says “I follow
      you on Twitter.”

     -Leave a comment telling me who you are---a parent, an SLP, a teacher, a grandparent, a 
      babysitter, etc.  Just because I’m curious J


Good luck, everyone!



Disclaimer: I don't work for Time Timer and I didn't receive any money or items from them in exchange for this blog post. 

Thursday, December 6, 2012

The Mom I Would Have Been

Yesterday I met a friend for coffee.  We each had our babies in tow (both little guys, 6 months old and 10 weeks old) and our big girls were at school.  Both of our older children have special needs, and the conversation ebbed and flowed from special needs school stress to sleep schedules for new babies.  As our visit ended, she mentioned getting a group together of moms with little ones, since it can be isolating to be at home with a baby.

Something in me clenched.  I hesitated to say yes, without knowing why.  And then it clicked: here I am, starting again.  This time with a different child, one unencumbered by differences and appointments . . . with him I am just a typical mom.  An average mom of an average baby with universal “problems” (nap schedules, pacifier addictions).  A mom who can watch other babies crawl around and pick up toys and think oh I can’t wait for that instead of oh . . . should that be happening already? I guess we’re late on that one, too.  The mom that I would have been, if things with Maya hadn’t been so different.

And it made me realize that parents of children with special needs suffer a double loss.  The first, the one most often discussed, is the loss of the-child-that-you-imagined . . . the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a given (stairs? maybe someday), the loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph). 

But the second loss, you don’t hear as much about.  It’s more personal than the loss of the child you thought that you’d have . . . it’s the loss of the parent that you thought you would be. Where the-loss-of-the-child-you-would-have-had says I wish that my child could play catch with me, the-loss-of-the-parent-you-would-have-been says I wish that I could play catch with my child.

While I’ve shed a lot of tears over the past four years, I’m not sure that I ever realized that some were for Maya and some were for me.  But now that it’s come to mind, I’m going to sit with it long enough to mourn the mom that I would have been. 

I would have been a mom who took her baby to music class and clapped and played happily, without the little clench in my stomach as I wondered if the other moms and nannies were wondering why my baby couldn’t sit unassisted or clap or crawl like the other babies could.

I would have taken pictures of my baby’s comically messy attempts at self-feeding, and scolded her for throwing food on the floor . . . instead of giving bottles for years, doing countless oral motor exercises, and battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips, or coffee dates with other moms & little ones . . . instead of being trapped at home by our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself, watching her run and climb but giving her some space to be independent . . . instead of guiding her safely to the equipment, positioning her feet and hands and prompting her to step-and-pull-step-and-pull.

I would have watched her run up to other kids and start playing, and wondered what they were talking about . . .  instead of holding my breath when she approaches age-appropriate peers, wondering if they will shun her, if she will notice, and how I should react. 

I would have yelled after her to be careful as she took off running with friends  . . . instead of watching her giggle as children run past her so quickly that she doesn’t have a chance in hell of keeping up (and so I laugh with her and say wow! They’re fast! and pretend that watching them and laughing is just as much fun as running around).

I would have reminded her to use kind words while playing . . . instead of standing behind her and translating her noises and gestures for other kids.

I would have met and chatted with other moms, making small talk about the kids and preschool and playdates . . .  instead of shying away because I didn’t want to talk about our life of doctors and therapies with them, I didn’t want pity, and I didn’t want to make them uncomfortable.

I would have taken her on more fun outings . . . instead of taking her to so many specialists.

I would have gone to birthday parties and socialized with other parents . . .  instead of dreading the moment when I walk into the room full of same-aged children and think oh my god, that’s what 2 years old is supposed to be like?

I would have played with her and thought about playing, or maybe let my mind wander to other things (errands or what’s on tv tonight) . . .  instead of thinking about therapy goals and how to position the toys and then move her legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to her to preschool in the neighborhood, meeting local moms and chatting outside . . . instead of loading my tiny, nonverbal three year old onto a bus to ride to a special needs preschool downtown, then walking up to my apartment and worrying about the long ride, and hoping that the matron would be nice and take care of her if she was tired or sad.
 
I would walk with my girl, or sit in a coffee shop with her, or take her shopping, and pay attention to her and talk with her and never give a single thought to if people were looking at her, or wondering about us, or staring.

I would talk with her, and enjoy the often humorous observations of a toddler/preschooler . . .  instead of spending (literally) countless hours researching, developing and teaching a variety of communication systems, each time hoping that she would be able to learn how to say more things and that I could get a glimpse of what she thinks about.

Parenting would have been a much easier job . . .  but, then again, I wouldn’t have appreciated it.

I would have lamented over seasonal colds and illnesses, saying things like we just can’t catch a break! when we were hit with a few in a row . . . instead of knowing that we were kind of catching a break the whole time by not having any larger issues to deal with.

I would have celebrated milestone moments with enthusiasm and pride, but lost the magic of those milestones quickly . . . instead of marveling at the unbelievable motor feats involved with something like sitting up unassisted, or jumping. (Seriously---jumping----did you ever think about how crazy it is?  Somehow you just will yourself up into the air and your legs make it happen. Unbelievable.)

I would have complained about the hard work of progress---potty training woes, a willfull child who dresses themselves in mismatched or seasonally inappropriate clothing, a kid who jumps off furniture or climbs onto countertops . . . instead of recognizing the feats of strength and coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya.  We would have had a ton of fun, I think, the Maya-that-she-would-have-been and the mom-that-I-would-have-been.   But I certainly love the Maya-that-she-is . . . and without her, I wouldn’t have become the kind of mom that she needed, a mom better than the mom that I would have been.
 
The mom that I didn’t know I could be.


   

Sunday, November 25, 2012

Our Car Seat Wasn't Safe. Oops.

Subtitle: How to Make Your BundleMe Safe (in 20 seconds)
 
Last night I posted this picture on Facebook, which prompted an email from Marie, a friend of the blog, which led to a bit of an education for me.  As it turns out, I was doing something incredibly common that's actually a bit dangerous. It took me less than a minute to fix the problem, and I wanted to share it all in the hopes that others may learn from my mistake. (Others learning from my mistakes has been a bit of a theme lately. I need to stop making so many mistakes, I guess.)  Anyway, here you go:
 
 
I know three car seat rules:
 
Rule #1: Car seat straps should fit snugly (if you try to pinch the strap, there shouldn't be any slack to pinch) and the chest clasp thingie should fit over the chest (not the belly), in line with the armpits/nipples.
 
Rule #2: Kids should, ideally, be rear-facing as long as possible (at least until 2 years old). 
 
Rule #3: Kids should never wear big winter coats in their car seat.  An impact will cause the coat to compress and the straps will end up being surprisingly loose.  (This photo album illustrates the best way to wear a big coat in a car seat---I don't know the woman who made it, but she's a car seat safety person and you can click through the pictures to learn more. This video, made by the same person, also shows why thick coats are a no-go.)
 
I had these three rules down, and actually felt a bit more car-seat-informed than average.  Because of Rule #3, I never put Will in his car seat with a coat on---he wears his normal clothes and a hat and is kept warm by his BundleMe:
 
Only 8 weeks old and already giving me attitude about having his picture taken.
 
As it turns out, the BundleMe, used the way that it is shown above, is actually not safe either.  Who knew? 
 
We live in a large city and walk a lot. Everywhere. Will's car seat snaps into the various strollers that we use, and he definitely needs to be bundled as we approach another New York winter. I swear that almost every stroller that I pass in the city is sporting one a BundleMe, or other bundling thing.
 
The problem, as seen on this very informative website, is that the part of the BundleMe that is under Will's body can compress in an accident, causing the straps to loosen and freeing Will up for more of an impact.
 
Here is Will "before"--strapped in snugly, with the BundleMe underneath him:
 
The BundleMe sans Will:

So, I took the BundleMe off and put Will back in. I didn't fully believe that a thin layer of fleece would really make much of a difference. But look:


That's really loose!

The site I posted earlier included this video---a (really) easy way to make the BundleMe completely car seat safe---and still snuggly warm.  First, I tightened up Will's straps.



Then, I grabbed a pair of scissors and simply cut out the part of the BundleMe that fit under Will, so that there wouldn't be any material between his body and the back of the carseat.



I cut out the velcro sides too
 
The modified BundleMe looks like this in the carseat:


And Will fit right in. I didn't have to loosen the straps at all:



And it must still feel warm and snuggly, because it took him about 11 seconds to fall asleep:

 
 
I was glad that Marie took the time to email me and let me know that the BundleMe wasn't really safe the way that we were using it, and I was happy to learn about a simple way that I could fix the issue and make the car seat a little bit safer. 
 
In writing this, I wondered if it would reach people who would think: "Oh please---I use a BundleMe and I'm sure it's totally fine. *If* (and that's a long shot) we're in an accident, how much is that little bit of compression really going to make a difference?!" (eyeroll)
 
As a total non-expert, I can see where they're coming from--but only for a second.  Firstly, because I think that every little bit of extra slack probably matters for things like whiplash.  And secondly, because if all that it takes to fix the problem is awareness, 20 seconds, and a pair of scissors . . . well, why wouldn't you?
 
 
 
 
 
Disclaimer #1: I am not a car seat safety technician, nor am I even particularly educated about car seat use. I've linked to people who seem to know way more than I do, so if you have any car seat questions please visit one of their sites---don't send them to me!
 
Disclaimer #2: I am in no way affiliated with any of the car seat sites that I linked to, or the BundleMe line of products.


Tuesday, November 20, 2012

We Are More Thankful Than You Are

This was originally posted on 11/23/2011. I love this piece, and I still feel exactly the same way. This is the first time I've ever copied & re-run a post, but I couldn't think of any better way to say Happy Thanksgiving from our family to yours.

We Are More Thankful Than You Are

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

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

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down. In taking something for granted, one accepts something as a given or true, often without showing appreciation. While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.
  • Will she get good grades? Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history. And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway).
  • Will he play sports? Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane.
  • Will he be teased? You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
  • Will she get married? Of course she'll have relationships and date and all that jazz.
  • Will he go to a good college? Will he stay on the path to college? Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
  • Will she make good friends or fall in with the wrong crowd? Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

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

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

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

This is a whole different world.

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

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

I am so thankful.

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

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

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

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

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

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

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

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

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

Thursday, November 15, 2012

Tailspin (and 3 Deadly AAC Sins)

It's been a rough few weeks for Maya.

Her brother was born, which kind of shook up her whole little world.  Dave was home for two weeks on paternity leave, a dream come true for a daddy's girl (poor dear is still shocked and saddened every day when the school bus pulls up at home and Daddy isn't waiting for her).  Then Hurricane Sandy hit, giving Maya a week off of school (and another week off for Daddy, too).  Her bus was damaged in the hurricane, so for the next week Will & I were driving her to and from school.  Also, with no busing to rely on, only half of her class attended school that week (and the teacher said that she would walk to the cubbies of the absent kids and point and cry---how sad is that?).  It's been a very inconsistent time, and preschoolers typically do best with consistency.

When times get tough, Maya gets tough back.

And not in a go-get-'em! way, in a boy-you-know-how-to-push-our-buttons way.

Her stubbornness is unparalleled (except maybe by mine).  And truthfully, I kind of like it*---she's going to need to be strong and willful and fight for herself. 

*Except when she uses it against me, because then I want to force her into a polite-direction-following-cheerful-girl.

In the past two weeks Maya has willfully decided not to do many things that I ask her to do.  (Cleaning up toys, not opening the dvd cases, etc.)  I've tried commanding, tried bargaining, tried time-outs, tried taking things away, and finally settled into a pattern that seems to be working for us. 

But there was one problem that I couldn't solve: Maya and the talker.

She had started to refuse to use the talker.  It made me hold my breath, watching her push it away.  Her version of the silent treatment?  Maybe.  It seemed like she wanted me to do the talking for her---she would even grab my hand and try to push the buttons with my finger.  If I pulled my hand away and walked away from her, she would just stop trying.  Possibly she would throw something, if anything handy was in arms reach.

For 3.5 years I had to talk for her.  And now she has a voice, albeit one that she is still learning to use, and was rejecting it.  This was not an area that I could allow to be overrun by stubbornness.  I needed to find a way to fix it.

And so I promptly set about doing everything wrong. 

Not intentionally, mind you, but you know how sometimes when you're really in a problem you can't see solutions, even an obvious ones?  Well, add a needy infant and sleepless nights and . . . .well, I guess I just didn't have my head in the game.  So I want to share three of the mistakes I was making . . . not because I like to brag about my mistakes, but because I think these are probably the three most common mistakes that communication partners make with nonverbal children.  So, here you go, learn from my mistakes:

3 Deadly AAC Sins That I've Committed This Month:

1. Commanding her to say something. 

Example: Maya points at the refrigerator and says Sssss (juice).  I reply, You want juice?  Ok, tell me with the talker.  Maya gets mad.  I realize my mistake, but I've already told her to say it with the talker and don't know how to take that back.  Now we're in a stand-off, she is juice-less, and we spiral into an unhappy tailspin.

Why it's not a good idea: How would you feel if you went to a restaurant, pointed at the menu to order, and the waitress said You want a cheeseburger? Ok, tell me with your words.  I guarantee you that my reaction would likely not be to ask for a cheeseburger in a polite sentence.  It would probably be some sort of are-you-joking look with a raised eyebrow as I thought Listen lady, you know exactly what I want.  And I'll bet that's what Maya was thinking, too. 

What I should have done instead: As I see it, there are two courses of action that are better than this:
  • Encourage the vocalization by saying Are you asking for juice?  Juice starts with a J.  J-j-juice.  Can you say j-j-j?  (She's likely to play along with this, she's constantly encouraged to make new sounds and wouldn't see this as forcing her to ask again, just as practicing sounds)  Great job! Here's your juice. 
  • Encourage the AAC by acting like I don't understand.*  Maya, I see you want something but I don't know what you're saying.  Do you want to use the talker to tell me?  At that point she can choose to use the talker or choose to get angry, but I have told her that I don't understand, so if she doesn't use the talker she won't get the juice by default. 
*I pretend to be clueless a lot.  Pretending not to understand might be the third most important thing that I can do for my nonverbal child (number 2 and number 1 are coming below). If you feel mean doing it, like your child knows that you understand and it's mean to pretend not to, then think about this:  The rest of the world won't understand him/her nearly as well as you do.  Sometimes you'll have to make your kid angry in the name of the greater good---forcing a type of communication that other people (teachers, classmates, friends, family members, etc) will understand. 


2. Giving her words

Example: Maya walks into the kitchen and stands by the freezer.  I say Do you want a waffle for breakfast? and she replies Yeah.

Why it's not a good idea: I shouldn't be trying to read her mind, for two reasons.  First, I might be wrong.  It's kind of egotistical to assume that I know what she wants when she goes to the freezer.  Maybe she wanted to tell me about something cold.  Maybe she just was wandering in the kitchen.  Second, me talking for her isn't doing her any favors (see the * above).  The world will not be able to read her mind.  She needs to learn to speak up for herself, and to practice doing it as much as possible.

What I should have done instead: Say nothing, act clueless.  Possibly put the talker on the floor in front of her, acknowledging that I think she might want to say something and so I'm going to make her talker available if she needs it.  Wait and wait and wait . . . and wait.**  If she decides to ask for a waffle, great.  If not, life moves on---even if on the inside I'm thinking oh man, I know she wants a waffle and she must be getting hungry and maybe I should help her out.  The world will not "help her out."  She needs to speak for herself.

**Waiting might just be the number two most important thing for the parent of a nonverbal child to do.  We're all used to conversation moving fast, fast, fast, but AAC takes time.  And for someone just learning to use AAC, it takes even longer.  Time to decide to use the device, to move towards it, to turn it on, to remember what you want to say, to remember where to find the word, to navigate to it, etc.


3. Not modeling
Example: Maya uses the talker to say Molly and I reply (verbally) Molly is your friend or Is Molly your friend? or Molly is so funny or some other sentence about Molly.

Why it's not a good idea: So many reasons.  1. I'm supplying most of the conversation. 2. I have no idea what she wants to say about Molly, I'm just saying random things. 3. If I'm not using Maya's talker to model what I'm saying, there's no way that she's going to learn to say any of it. 

What I should have done instead:  Two choices:
  • After Maya says Molly I could reply What do you want to say about Molly? and then just wait.  (If, after waiting a long time, you get no response, I would move on to the next option)
  • If I choose to reply after Maya says Molly I must model what I am hoping she will learn.  Modeling is, without a doubt, the most important thing that a communication partner can do with an AAC learner.  Think of it like this:  If you were learning a second language, but you didn't know anyone who speaks that language, the learning would be very slow . . . you might try to use the new language, but no one practicing with you.  On the other hand, if you go to a foreign country and surround yourself with speakers of the new language, you will learn in a much faster, more meaningful way.  I have to speak Maya's language as much as possible.  So I should have said Molly (push button for Molly) is (push button for is) funny (push button for funny).
How could I possibly expect her to learn to speak in sentences*** if I'm not showing her how to?

***If you're child isn't trying out sentence yet, just model one step above what they are currently doing.  If they are only tapping one word on their system, you can model two-word combinations, etc.

-------
For the record, I am usually a good modeler.  I kind of fell off the wagon because I was spending so much time nursing Will and couldn't get to the talker.  Last week as Maya and I were butting heads over communication, I re-realized that the best way to get results from her isn't confrontation---it's enticement.  I decided to quit trying to make her use the talker, and just stuck to playing dumb (I have no idea what you're saying . . . do you want to try using the talker to tell me?) and modeling (in a very casual way, like I couldn't care less that she wasn't using it, but I would just keep using it because it was so fun. Even though on the inside I was fuming a little.).

Sure enough, after a few days (a few days that felt kind of long and painful), we had this exchange:

Maya (via talker): Molly

Me (verbally): What do you want to tell me about Molly?

Maya (via talker): My friend.  Jake.

Me: What do you want to tell me about Jake?

Maya (via talker): My friend.

"Molly my friend. Jake my friend."
 
This was after a day in which I had modeled several "Sally is my friend" type sentences. I truly didn't realize that she was even paying close attention when I modeled them the day before.
 
Stubborn or not, I know that Maya wants to communicate, and learns new things so quickly if I can entice her into paying attention, rather than end up butting heads.  So I'll save the stand-offs for other battles, like picking up toys, and try to just stick with acting clueless and modeling.  (Even if at times I am screaming Just use the talker!  I know that you want juice and if you would just say it with the stupid talker instead of crying stubbornly we would all be much happier! in my head.)
 
 
 
Disclaimer: I am, as always, not a speech therapist or AAC professional.  The stuff above is my non-professional-but-pretty-well-researched opinion.  If you are an SLP or ATP and would like to share insight, tips, or opinions (even if you're going to tell me I'm doing it all wrong) please leave a comment below! 
 
Other information: Maya uses an iPad and the Speak for Yourself app to communicate.  You can read more about our communication journey here.
 
 

Thursday, November 8, 2012

It was a dark, cloudy day . . . and then it snowed

Yesterday was a long day.

The buses that go to Maya's school were damaged in floodwaters from Hurricane Sandy, so we have been without bussing.  The day started with the typical morning busy-ness of getting Maya ready for the day, getting her school stuff together, and juggling a nursing newborn.  (Well, not literally juggling.  Just figuratively.)  I dropped Maya off at school and apologized to Will on the way home when I noticed him licking his fists hungrily and whining.

Then back home.  Sorted through bills (stressful).  Scheduled doctor appointments (stressful). Folded some laundry, took care of Will, and tried to figure out the source of a nagging feeling of impending doom.  Finally I realized that it's the hunt for Maya's new school (she's currently in her last year of preschool) (stressfulstressfulstressfulstressful).  I went to a school fair thing two weeks ago that left me feeling like the possibilites are slim, and like I'm already behind the ball by having a baby in the fall instead of going on a bunch of fancy school tours (for schools that we can't afford anyway). I felt the panic rising, so I rode the wave, imagined the absolute worst (like Maya in a basement classroom with a few bored aides who have very low expectations) and had a hard, ugly cry.  Then, still leaking tears, I fired off emails to a few knowledgeable folks who may be able to help talk me down and steer me in the right direction.

Washed my face and tried to re-group. Packed up to go back into the city.

Realized, when I'm almost there, that I've forgotten Maya's chocolate milk at home.  (She has it in the car on the ride home, and since she never wants to leave school it's my kind-of-bribe  . . . Come on, Maya---there's chocolate milk in the car!)  Will and I stop at Starbucks to pick up a box of chocolate milk, and I think about sitting for a few minutes, but there are no seats available.  Then I notice this woman:

Yes, this lady is sitting in Starbucks with her dog.  And the dog has his own chair.

I realized I had lost a seat to a chihuahua.  That's really the kind of day I was having.

By this time, the sleet was really starting to come down (literally.  And maybe figuratively.).

Onto school pick-up, Maya turned the corner, saw me, and laid down on the floor sobbing and yelling "Daddy! Daddy! Daddy!"  I collected her (this is where the chocolate milk bribe comes in handy) and got both kids into the car and made a mental note to order a new coat because mine was definitely no long waterproof.

And then something incredible happened.  As we drove home, the sleet during to snow.

And Maya basically lost her mind (in a good way).

She shrieked.  She cheered. She was in a complete, total state of pure glee.  And when we got home and I took her out of the car and she was standing in the falling snow, she looked like this:

 
That's pure delight at the magic of snow.  That's also exactly how I feel when I see the first snowflakes of the year.  I love that we have this in common :)
 
Then we took the walk home a few steps at a time, because she had to stop and shriek delightedly every few steps------the nonverbal equivalent of a little kid yelling "it's snowing! it's snowing! it's snowing!" She might not have the words, but she certainly has the enthusiam down.  I can't watch this without smiling along with her:
 

We went upstairs, where the day had some more bumps. The dishwasher wasn't working. Maya had a rough time in speech therapy.  Will was cranky.  Dinner was a battle.  And then I decided we should go out in the snow before bedtime:
 
 
 


 
 
Watching her appreciate the magic of snowflakes wiped a way a lot of the day's stress.
 
And so did this smiling face.
 
(the picture is a few days old, but the smile is the same)
 
 
And so did the big glass of wine that I had after the kids were asleep. 
 
 
 
 


Wednesday, October 31, 2012

Happy Halloween, 2012

Halloween 2012, in pictures: 
 
 







We went trick-or-treating with a big group of neighborhood kids, and Maya totally held her own---and was ecstatic!





PS--If you've been with us since 2008 (basically, if you're my mom) you might recognize Will's giraffe costume as Maya's first Halloween costume :)

Monday, October 29, 2012

The Power (literally) To Talk

Right now I'm sitting at our table, a sleeping Will on a blanket nearby, while Dave & Maya play with neighbors in our building.  No one has school, as Hurricane Sandy is bearing down on the area---wind is howling past the windows as I type.  Like many in the Northeast, we've taken some precautions to prepare over the past few days . . .

In case of damage to water lines, we've got plenty of water.  The bathtub is full, pots are full, and we've got a case of water. We've got flashlights and candles.  We have ice ready in case we lose power and need to put stuff in a cooler.  We have shelf-stable food.  We have matches to light the gas stove with in case the power is out.  The cars have gas---handy in case power is out and we need to charge up the cell phones.  Electronics are charged.  We have a landline and a battery powered radio.  We've got medicines, diapers, wipes, etc.

We're definitely all set----odds are, we are way over-prepared.  Even if stores weren't able to open for a while, we'd be ok. But that's fine by me . . . that means that we can relax, drink coffee, watch tv, and rest assured that we're fine, no matter what happens here.  (Fortunately, we're not in a flood zone, so no need to evacuate or anything.)

As we prepared for the storm, I thought about how lucky we were to fall into the group of people who would be inconvienced by the storm, rather than the group that would be in serious need or even endangered

My family is all together under one roof, safe and secure.

We have plenty of tap water, and don't need bottled water for formula because Will is nursing. 

We don't have any dietary concerns that require special foods or formulas, so refrigeration is nice, but not necessary. 

We don't have special needs that require equipment that might need to be powered or charged. 

Oh. Wait.



Crap.

While perhaps not medically necessary (like, say, an apnea monitor), Maya's talker is certainly necessary.

The talker and its case are fully charged.  Maya's vocabulary file for her app has been backed up and loaded into our back-up iPad.  We have a car charger for the iPad, so we could charge it in the car if we needed to, but that won't work for the case---so we would have to take the iPad out of the case if the battery in the case dies (because otherwise there would be no sound).

The talker is as storm-ready as it could be.  But it got me thinking again, about how things sometimes feel so unfair. I mean, plenty of people get annoyed when the power is out simply because things get more boring---no tv, no internet, no movies, etc.  But for Maya, a prolonged power outtage could mean no voice.  If the talker died, and we couldn't charge it, I imagine that Maya would be equal parts confused and frustrated, and justifiably so. 

I thought that the hard part of adjusting to using AAC would be the education needed to learn the system.  I had to learn it, Maya has to learn it, we need to model and practice and reinforce.   But the reality is that relying on an AAC device is no small feat---and it's not just because it takes work to use the system, but also because it takes work to maintain it.  I've gotten used to carrying the talker around with us, despite the fact that it's heavy and cumbersome, not something you could easily pop into a bag. Dave & I remember to charge it at night after Maya is sleeping, lest she be left accidentally mute from an unforeseen battery drain.  And now we've seen that preparing for emergency situations means preparing the talker as well. 


Safe thoughts to all of those in Sandy's path.



Wednesday, October 24, 2012

Two Roads Diverged


The differences in the first 10 minutes of Maya’s life and the first 10 minutes of Will’s life were enough for me to cautiously note, even in my post-delivery haze, that it seemed like our kids might have markedly different paths. While I had already spent time thinking about the differences that we would encounter as parents of both Maya and a child (possibly) without the extra challenges that she faces, I did not realize that the differences would be immediate . . . literally from the first moment of life.

Will cried when he was born, loudly and steadily, continuing as the nurse toweled him off and looked him over. I sat in the delivery bed and watched him from across the room, arms flailing and incensed, his cries declaring “I am angry and I am strong” and to me they carried the subtext “I’m different, this is different, from the very first moment.” I thought back four and a half years to Maya’s first moments, punctuated by only a small cry before she was quickly carried into another room for some suctioning and examining.  With Maya, residents had questions for us immediately about prenatal screening and the spacing of her eyes . . . with Will, a nurse cleaned him up and handed him over to me, and that was that.
 
Angry, yelling Will
 

I held Will and Dave held Will and we took pictures and soaked in the awesomeness of a brand new person.  I knew that a test was coming, and I was hesitant to put Will up to his first evaluation . . . would he be able to nurse?  When Maya was born I didn’t know that the ability to feed is really the first unspoken milestone that a baby hits, ideally at birth . . . but now I knew that feeding was a kind of developmental test, and I almost didn’t want to know whether he would pass. 

Maya had done the cutest little thing, right from birth-she sucked on her tongue.  She liked to stick her tiny tongue out and she liked to move it all around—I had never seen another baby do that, and I was still blissfully na├»ve . . . seeing her do something totally novel had me thinking “that isn’t typical--she has a little unique personality already!” instead of “hmm, that isn’t typical, maybe it’s a sign that something isn’t right.”  I didn’t know that something may have been amiss. I just thought she had character.

Maya, and her little tongue, getting ready to leave the hospital


She couldn’t latch on to nurse, and when she was 1 day old a nurse came to teach me how to cup feed her.  Cup feed. A one day old baby.  They put some formula into a little medicine cup and showed me how to hold her up and dribble drops of the formula into her mouth.  This was exactly as crazy as it sounds.  Little streams of formula ran out of her tiny mouth. She coughed and sputtered and I worried that I was drowning her (she already needed regular suctioning, still congested from birth, and now she was choking on formula that I clumsily poured into her mouth).  As Dave slept at home that second night (we didn’t have a private room, so he was kicked out overnight) I became increasingly frazzled with each cup feeding.  The thought of bringing Maya home with a little stack of medicine cups and my breast pump was terrifying. I didn’t know how this would be sustainable.  It certainly didn’t feel sustainable.

When the pediatrician arrived in the morning to examine and discharge Maya and asked, “How is she doing with eating?” I unraveled, tearfully confesssing that I didn’t know if I was good enough at the cup feeding to take her home.  The doctor seemed puzzled and asked why we hadn’t tried a bottle, and I replied, wide-eyed, “They didn’t say we could use a bottle. I thought that we couldn't use one  because she couldn’t latch.” (I later learned that because NY state is (was?) so pro-breastfeeding, they push cups instead of bottles for babies whose mothers intend to nurse.  What a freaking mess.  If I had known then what I know now, I could have avoided a lot of stress in the hospital by demanding a bottle right away.)  She called a nurse immediately, had a bottle brought in, and together we figured out a way to get Maya to latch on to the bottle (it wasn’t easy and required some maneuvering, but it worked).  For the first few days, Dave and I were the only people to feed her, as we had mastered the “how to get the bottle in” technique.  I didn’t know that it shouldn’t be so hard . . . I thought it was just a tricky newborn quirk, and I thought that after a few days she would outgrow it.

Once at home, we started a crazy schedule of pumping and bottle feeding.  In the early days I would pump every 1.5-2 hours, round the clock.  Between pumping and bottle-feeding Maya, little else got done.  The silver lining was that Dave could help.  There were many nights when he fed and took care of Maya, and I just pumped and slept and pumped and slept. I developed a system for the pumped milk, rows of bottles and bags accumulating in the fridge and freezer.  I was proud of having an organized system . . . I didn’t know that it shouldn’t have to be so complicated.  I didn’t know how much easier nursing, or bottle-feeding formula, would have been.  (Not that I would have changed my choice, I simply just didn’t understand that we were dealing with layers of complication that weren’t typical.)  Physically, the pumping was hard to get used to . . . I’ll spare you the details, but there were several painful side effects of pumping that took a few weeks to heal.  I didn’t know that nursing would have been less painful (not pain-free, exactly, but much, much easier initially). 

And now, here was Will.  Less than an hour old, wide-eyed in the same way that Maya had been after her birth, small and swaddled in my arms as I sat in my labor and delivery bed.  Dave and I had each snuggled him and taken pictures, and I was ready to try nursing, to find out whether we would be facing some of the same feeding struggles or whether we would be embarking on a different path.  It took him about 3 seconds to latch and start feeding.

Two roads diverged. Instantly.

We've already taken the road less traveled by.  As it turns out, the road more traveled is pretty nice, too.

These first few weeks with Will have been lovely in the same way that the first few weeks with Maya were.  Baby baths, a warm little pile of baby in the crook of an arm, sleepy gassy smiles, tiny hats and stretchy outfits.  The sweetness of something new.  And it’s a good thing they were both so cute, because these initial weeks have been exhausting, too.  This morning Will went to sleep five minutes before Maya had to get up for school. I think they’re tag-teaming already.

Will wins the prize for easiness, though.  Take away the constant pumping that I did with Maya, and life is a lot simpler.  When he wakes up hungry, I pick him up, sit down, and feed him.  It's that easy.  We took the kids to the zoo when Will was 8 days old, and all that I had to bring to feed him was my nursing cover.  With Maya, we would have needed the cooler bag of pumped milk, the instant hot pack for heating it up, and clean, empty bottles.  If we wanted to stay for more than an hour (plus travel time) I would have had to bring the big pump bag---but I wouldn’t have done that in the first week, it would have been too overwhelming.  So it just wouldn’t have happened.

I also don’t worry about Will as much . . . or at least not in the same way.  Despite the insistence of everyone before we left the hospital with Maya that she was fine, a seed had been planted that maybe-something-could-possibly-be-atypical-maybe-but-probably-not-no-definitely-not-well-maybe.  Something about some of her little features. My crazy post-partum brain spent a good chunk of the first week studying her and wondering if everything was really ok. (Hindsight being 20/20 and all, I now know that I wasn’t really crazy, I was on to something . . . but I gladly let myself be convinced otherwise.)

With Will, things are “normal” . . . for now , anyway, and I will soak up the easiness of every moment of normal that we get.  (Seriously, I’ve had so many moments of “holy cow, this is so easy” already, and I know that there will be many more to come.)  But I know, all too well, that things can change in an instant, and I don’t take a single normal, typical day for granted. Right now the only thing expected of him is eating well and sleeping poorly, and he does both of those like they are his job.  Right now, he’s on the road more traveled, the typical path of a typical baby  . . . and he’s taken us further down this road than we were able to go with Maya.  It’s nice to get a look at it.

The beauty of being a seasoned traveler of the road less traveled is that I don’t have the same fear of that path that I did several years ago. We’ve traveled that road for years now, and I know that it’s bumpy and hard to navigate, but beautiful and unique and rewarding.  So whether we stay on this road with Will, or whether he veers to another course, I have the peace of knowing that things will be just fine.  Our little family will be happy travelers, safe with each other’s company, no matter which roads we each end up traveling on.