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.