No One Knows The Words A Child Cannot Say

The disability world has its fair share of inspirational quotes. Some are actually inspiring, some are trite, and  a few are downright dangerous. The quote below (popular among some mothers of nonverbal children) falls solidly into the dangerous category.

"A mother knows the words her child cannot say."

First, this is inaccurate. While I wish that I knew the words my children could not say, that's just impossible. Come over any day this week and watch my almost-two-year-old rage against my ignorance by tantrumming loudly on the floor when I hand him the not-the-one-he-was-thinking-of toy from the too-tall-to-reach shelf. He'll be happy to point out that parents are not always accurate mindreaders. And he's only two. If I can't even predict which toy he wants when he's pointing and whining, how could I possibly predict the complex (and sometimes random) thoughts of my 6 year old, who has very limited speech? 

But more than inaccurate, there is a danger in quotes like this. This says "Mom, you've got this. Be secure in knowing that your connection to your child is stronger than language. You know what s/he can't say. Don't worry." But, well, that's clearly not true. I'm not a mindreader, and neither are you. And by sharing and promoting images like this one, we are (unintentionally, of course) spreading the idea that a) the child's thoughts are simple enough to be consistently accurately predicted and b) we shouldn't be (doggedly, enthusiastically, urgently) pursuing some sort of AAC that can provide them with a way to say exactly what they want to say, all of the time, to anyone.

So if this isn't an ideal image to share, what would be? I have a few ideas:

This is a bit more accurate:

Because it's not just about moms:

Because 80s rap enhances any meme:

In case you're not familiar with 80s rap:

This is certainly true for me:

And to include dads, too: 

And here's one if you're a really big fan of details:

For the dads, too:

And guess what, SLPs? While researching this post, I also stumbled across this dangerous saying, targeted at you and yours:

Don't worry---I made a new one for you, too:

Because the bottom line is this:

There. Much better.

Edited to add: The Facebook album of these memes also contains several others: for friends, teachers, therapists, SLPs, caregivers, ones that say "mum", and few others. 

These will be up in an album on our Facebook page, and also have their own board on Pinterest.

An iPad case that's toddler-proof

Disclaimer(ish): The folks at Gripcase emailed me to see if I was interested in trying out their case and writing a review. Their timing couldn't have been better, as Will was starting to use our full-sized iPad and I didn't love our current case. This was the first time I've ever accepted a "would you like to try and review" offer, because I don't want to be advertise-y, and I'm not interested in trying a lot of things anyway. (Who has the time to try a lot of things?) But I had been intrigued by the GripCase since I saw Ellen's review (over at Love That Max) last year, so I thought, well why not. Turns out, I really like this case. I wasn't compensated for this review or my opinion, but I was provided with the case, their stand, and their carrying strap. 

NOTE: This case was to be trialed on our iPad2 . . . formerly known as our "play iPad", now turned into Will's talker. Maya's talker remains housed in the amplified mini iAdapter, as I believe that dedicated AAC devices must have amplification (and the iAdapter is currently the only solidly amplified case). 

When the Gripcase arrived, I was skeptical.

front

back

I couldn't find the instructions on how to install the iPad into the case, and then I realized that, quite simply, you just slide it in. So I did. And I thought "I never should have agreed to review this thing, because it feels like it is made of air and my iPad will surely be destroyed within the first hour of putting it on."  Remember now, this is an iPad2, our "play" iPad that had become Will's talker iPad. So the primary user of this device is an 18 month old boy. He literally does not understand the meaning of the word gentle.

But he couldn't wait to get his hands on it. 

Or, rather, one hand, as the other was used for clutching of his little monkey.

And then he realized that it was light enough to run around with, and the handles made the running-and-carrying easy.

Then he took a break because he had important things to talk about.

And the next morning we tried out using it with the stand:

That's also when he realized that if Mommy is trying to take the iPad away, say, to take a picture of it, the handles are really great for tug-of-war:

In the past we have used the following cases: the Otterbox Defender, the Griffin Survivor, the Gumdrop, the iAdapter and the iAdapter mini. As mentioned above, if you're using an iPad (or iPad mini) as a dedicated communication device, I recommend the iAdapter line. If you're using an iPad with kids for other reasons (or you're saving up for an iAdapter) then I think the Gripcase beats the other three mentioned above, easily. (We had used the Griffin Survivor on our iPad for the past 2 years, but we're sticking with the Gripcase now.) Here's why:

Pros:

Weight: The Otterbox and Griffin are super-protective, but super heavy. Like, really heavy. The Gripcase is amazingly light. It's made of some foamy/rubbery material that feels like nothing. I was tempted to throw it like a frisbee (it would have gone far, but I am an awful frisbee thrower).

hang-on-the-plastic-stroller-clip light

Handles: Those three other cases do not have handles. I didn't think about it before I saw it in action, but handle really (really) decreases the drop-ability of an iPad. Will can (and does) run around here at full speed while carrying the iPad behind him with one hand, and he rarely drops it . . . 

Durability: . . . except when he drops it. Most famously, he will tuck the iPad between his car seat and the car door so that when I open the door to take him out . . . bam. Right to the ground, from SUV car seat height. It's happened an embarrassing number of times, along with a few falls from the couch, a few angry throws, and some general clumsiness. Also, he likes to stand on it. And, amazingly, not a scratch. When the iPad lands vertically (as in, the handles hit the floor) it bounces (really). And when it hits horizontally, it tends to land face down (which sounds bad, but it's got a concave shape so that the screen is held up off of the floor). 

The Stand: It's sold separately, but it's really good. The Griffin stand snapped from us pushing the buttons on the communication app. This one is lightweight and really good. The only issue is that it doesn't fold or anything, so it might be a little bulky for travel. Small price to pay if you've gone through multiple flimsy stands, though.

It's difficult to see, but the screen is actually lifted up off of the table here.

Cons:

Screen protection: I bought a adhesive screen protector and put it on the iPad, because there's no component that covers the screen with this case. The Griffin Survivor has a hard plastic covering over the screen, but is lacking in the "pros" mentioned above. 

Size?: I mention this because I was initially startled at how much bigger it seemed than the other cases. However, it still fits in a (standard size LL Bean) backpack and doesn't seem big anymore, but there was definitely a moment of surprise.

Amplification: I mentioned it above. For a dedicated device, you really need amplification. That being said, this case is definitely louder than the Otterbox, Griffin, or Gumdrop cases because they have a little cut-out so that the speaker isn't covered. 

That's about it.

They sent us a carrying strap, which connects to the case in a really interesting novel way. This is what it looks like when attached. We generally keep the strap off, as Will is very short. 

Also of interest: they have a "Buy One Give One" program in which they will donate a Gripcase to a school of your choice for every case that you buy. If you're buying for a school district, this would come in particularly handy.

Of all the cases we have on hand, our iPad is going to stay in the Gripcase, which is basically the biggest endorsement I can give it. I really didn't expect to like it as much as I do!

I Am Not A Mind Reader (And Neither Are You)

In discussing AAC (augmentative and alternative communication, in which a child uses something other than speech to aid their communication---signs, boards, picture cards, apps, devices) with parents, I am sometimes surprised by their lack of interest in using it at home with their children who have complex communication needs.  Obviously all parents want to communicate with their children, so their resistance often comes from a well-intentioned place . . . they feel like they understand their kids, and so inserting a device (which can feel cumbersome and disconnecting) isn’t necessary.  It might feel more personal to engage with a child directly, through their speech and gestures, and parents feel like they don’t need a device because they understand what their child is thinking.

It’s a (philosophically) dangerous assumption.  One that all parents make at some point, and all parents should abandon at some point.

Picture this:

 

(this picture is from the internet somewhere)

Maya, my 5 year old daughter who has severe speaking challenges, and I are playing outside after school. A yellow school bus drives by and she jumps up, points at the bus, looks from the bus to me and yells “Bus!” (She’s a big bus lover, and “bus” is a very clear word for her.) She has wide, excited eyes and a smile. I know she’s thinking Wow, I love that bus! and so I reply “Yes, a bus! I know you’re excited to see the bus!”

Except here’s the problem---I don’t actually know what she’s thinking. I get the gist (something enthusiastic about a bus) and I assume the details (I love that bus).  This is a big problem, a common trap that parents (and other adults) fall into with communicationally complicated children.  The I-know-what-she’s-thinking mindset solidifies slowly, out of necessity, and initially develops for all parents with their babies/toddlers.  When children start to communicate, they do it through whining, crying, pointing, crawling/walking to objects (often times dragging a parent behind them), making sounds, signing, etc. We caregivers become adept at interpreting this intent-filled mash-up. Eventually, speech comes and the child can more clearly express their thoughts . . . except when speech doesn’t come . . . and then parents get additional practice at translating sounds and approximations, or gestures, or even sometimes just a child’s eyegaze---a glance that lingers on a cabinet, then flicks to their parent’s eyes, then returns to the cabinet.

We predict what our children are “saying”, and, with the youngest of children, we probably get it right pretty often. (After all, if a toddler points to the cookie cabinet and says “ti-ti” they probably want to eat a cookie, not to discuss cookie theory or bake a batch of cookies or conduct a brand comparison or analyze cookie shapes. Probably.)

But as a child with limited speech gets older, a somewhat loaded situation develops when we continue to make assumptions about their speech.  If we assume that in a particular situation (eg. Maya sees a bus driving by) a certain sound/word/sign/gesture (“Bus!” said with excitement) always means more or less the same thing (I like the bus! I love buses!) then we begin to pigeonhole our child’s communication, and to (inadvertently, unintentionally) sell them short.  If my reply to Maya in the bus situation is always something along the lines of “You love buses!” or “I saw that bus!” then I am a) making a simplistic assumption about what she was thinking, and b) replying in a predictable, kind of boring way that doesn’t expose her to any new ideas.  Both of these points---the assumption about her thoughts and the reply that I chose---have unfortunate consequences.

First, the assumption of her thoughts stinks, because I am assuming that she is thinking more or less the simplest thing that I can glean from her communication (one word (bus) +  excitement = I like that bus).  Whether this is accurate or not, I am selling her short by not stretching my mind to allow for the fact that she could be trying to say other (more interesting, novel, creative) things about the bus.

Second, my reply stinks, because my low expectations of what she was trying to say have now lowered the quality of my response. What if she was trying to say “That bus is so yellow!” and I replied “Yes, you like buses.” Ugh. My intentions are nothing but good, but my underestimation of what she is attempting to say has now led to a low level, simple reply. Even if she was saying “I love buses!”, I could offer validation with “Wow, a bus! You love buses! That bus was bright yellow like the sun, and it had so many wheels! I wonder if we’ll see another bus today.” A response along those lines acknowledges her enthusiasm and then models other ways that we can communicate about buses, other things that we can think about when we see a bus.

The simple truth is that “Bus!” could mean a lot of things from a 5 year old. A lot of things. To name a few:

-that bus is yellow                        -that bus is big                             -that bus looks like my bus 

-that bus is not my school bus      -is that my school bus?                  -I like that bus

-I see a bus                                 -do you see that bus                      -I liked riding the bus to school today

-something happened to me when I was on the bus today         -I have a toy bus just like that one, 

-I want to play with my toy bus                                                       -I want to get on that bus               

-look at the wheels (or insert other part) on that bus 

-that looks like the bus from (insert book/movie/tv show)             . . . etc.

The only way to know what Maya wants to say about the bus is to provide her with a way (or multiple ways*) to say as many things as possible. This is why I can’t help but cringe when parents (or others) say “We don’t really need to use AAC (communication boards, PECs, devices, apps, whatever) at home because I know what he’s thinking” (or “I know what he’s trying to say”). Maybe you do, or maybe you get the main idea, or maybe you get it wrong but your kid doesn’t try to correct you (children with limited communication abilities typically become passive communicators). Or maybe your answer is distracting and “good enough” even if it isn’t correct (eg: If your child comes home from school, points to the cabinet, and says “cookie”---thinking about how the girl who sits next to him at school today had the exact cookies that are in that cabinet---and you assume he wants a cookie and give him some on a plate, what’s the obvious reply from your kid? To sit and eat the cookies. You then are positive that he was requesting a cookie and you fulfilled his request, and he is now eating cookies and has moved on from what he was thinking about before.).

Guessing/assuming/inferring what a child is trying to say is not a good long term solution. A vehicle needs to be provided that will allow them to say diverse, novel things in multiple environments. We (the adults) need to learn to ask “What about the __________?” and then wait.  And wait. And wait.  And then, if nothing comes, model different statements that would all be appropriate.  Here’s an example:

Maya: Bus!

Me: What about the bus?

Maya: (silence, watching the bus drive down the street)

Maya: (silence)

Maya: (silence, looking at me)

Me: What do you want to say about the bus?

(more waiting)

Me (speaking and tapping emphasized words on her talker): We could say that the bus was yellow and big, that it was going fast, that you like that bus!

This shows her that there are many things to say about buses, and that using the word “bus” isn’t enough to let me know what she’s thinking. She needs to say more, and I expect that she can do it (even if she can’t do it yet). It shows her other words that would be useful in another situation like this. And it lets me insert my guess of what she was thinking (“I like that bus”) but doesn’t limit her to just that one sentence. It opens both of our minds, a little bit.

 *We have tried many methods of communicating with Maya before settling in with her communication app, Speak for Yourself. Many of those methods are outlined here. This is definitely not a comprehensive list of AAC options, it's just the stuff that we've tried.

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.
 

Just let me have the now.

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

Oh, the blissful naiveté of my past.

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

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

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


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


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

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

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

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


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


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

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


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

How we talk with our (mostly) nonverbal girl

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)

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!

He's just not that into us (doctor style)

Our genetics appointment last week came and went without much fanfare.  It was the same type of appointment that we’ve had a bunch of times now.

Part 1:  We meet with the assistant doctor (and med student/s, usually).  Update them on the past 6 months worth of appointments, discoveries, progress, etc.  Brief physical exam.  I present the new syndrome that I’m eyeing, my reasons for suspecting it, and the test that I think we should do.   (I feel like I'm pleading my case to a judge and resist the urge to take a bow when I'm through stating my case.)  Maya wanders around the room, investigating, searching for things to open/close/rip/crumple/make a mess of.

Part 2: The doctors tell me that she doesn’t seem like a typical kid with Xyz syndrome.  She’s too tall or too short, too nonverbal or making too much effort to become verbal, too high functioning (hey, that one was at least nice to hear), too stable on her feet (really?  Really?) or whatever.  I counter with “Yes, but I read that 10% of kids with xyz are able to walk independently, or that 80% don’t have cardiac involvement”, or whatever.

I resist the urge to throw up my hands and says “Obviously she’s not a typical kid with any syndrome . . . otherwise we would already have a diagnosis.  She’s an outlier.  Join me in thinking outside the box, won’t you?”

Part 3: “Ok, Mom, let me just go and consult with Dr. Hesincharge and we’ll come back to talk with you in a few minutes.”  Door closes, Maya wonders what’s going on here.  We play, and possibly probably shred the paper covering on the exam table.

Part 4: Dr. Hesincharge enters and reaffirms that Xyz probably isn’t a match, but we’ll run the test just to “cross our t’s and dot our i’s”.  I am happy that we’ll run the test, just to check.  Then he says  “So, after this test, there’s really not much that we can do here.” 

I deflate a little, and the deflation surprises me.  

Did he just break up with us? 

Dr. H:  It’s not you, it’s me.  There’s just nothing else that I can bring to the table here.

Me:  Uhhhh.   You’re, like, the doctor.  We need the doctor.  You’re supposed to diagnose things.  You can’t just quit on us.  Shouldn’t you be trying to piece clues together and read research papers and solve our mystery?

Dr. H:  All of the broad screening tests have been run.  I’ve done fancy test #1, fancy test #2 and even fancy test #3!  Then you wanted me to do test #4---even though I didn’t think she had Abc syndrome, so I did.  And now you want a test for Xyz, so I’ll order that too.  But there are, like, a LOT of other letters.  Clearly we can’t test for all of them.  And I could make you keep coming back once a year for physical exams, but I’ll be honest, I just have no clue.   So really, why keep up the charade that I’m actually providing any diagnostic care?

Me:  Ummmm.  This relationship really can’t be that draining for you.  Remember, I’m the one doing the legwork and the research?  But you have the fancy bloodwork forms, and the lab, and the hospital.  I can’t order the tests without you, man.  Don’t give up on us.  In a few months, I’ll start to wonder again.  And I’ll start to google.  And I’ll need your hospital lab and your bloodwork pad again.

Dr. H:  (Sigh).  Well, ok.  I guess if you need me, you have my email.

Me:  Thank you.  That wasn't so hard, was it?  And by the way, doctors shouldn't break up with patients.  Talk about literally adding insult to injury.  Sheesh.

That may be a dramatic elaboration, but the vibes in the room were similar.  “There’s really nothing else we can do here” is the doctoral equivalent of “It’s not me, it’s you”, I think.  (Although clearly, it’s not us, it’s him.) 

And I thought I really liked this doctor, too.  He seemed like a guy who would sink his teeth into the mystery of undiagnosed-ness and analyze all of the puzzle pieces with me, trying different things to see what fits.  But now I’m alone again.  Just me and the medical charts.

So I guess after the results of this test come back (3-4 weeks, but I’m not getting my hopes up) we’ll probably be done with Dr. Hesincharge.   We’ll settle into preschool routines and enjoy the fall and I might not even think about genetics for a while . . . but when I do, we’ll go back to the first geneticist that we saw (who was very nice, but also not very aggressive).  While he may have been a little more relaxed and slower to test, at least he hasn’t given up on us yet.

Allow me to translate . . .

If you want to learn how to speak MSL (that's Maya Sign Language, a lesser known dialect of ASL) then all you have to do is watch this handy dandy translation video.  I made it for her preschool teacher (she starts on Thursday!  Only a few days left!) and thought I'd share it here, too. 





In other news, tomorrow brings us back to the geneticist to run a new test for a syndrome that's been on my radar for a while now.  I've been meaning to write about what that's like (from researching syndromes to waiting for test results) but this whole about-to-start-preschool thing is consuming right now. 

Soon.

The Maya Handbook

I'm taking a break from a project I've been working on in my free (read: non-Maya) time today: a Maya Handbook.  A guide for her teachers/therapists to all-things-Maya.  It seemed like a great idea---since she can't talk, I'll talk for her in a pre-first-day-email. 


Frankly, it's turned out to be kind of exhausting.

I started with some simple stuff, like her general personality.  Summary: 1. She's delightful but stubborn.  2. She sometimes acts like she can't do things that she can (so don't let her trick you) 3.  She listens to and understands way more than you will initially be able to see, and 4. She'll do anything for a laugh (fake sneezing and fake laughing are on the rise).

That wasn't too hard.  It's kind of fun to tell people about my kid :)

Then I moved on to some physical stuff, such as: 1. She moves too fast and doesn't pay attention to where her feet are, so she will fall, suddenly and hard. 2. If she starts to lose her balance (even in the slightest), her whole body will tense up and, again, she will fall.  If no one is in arm's length, she will reach for the closest child or object and possibly pull them down as well. 3. I talked about different PT techniques, goals, etc we've been working on and expressed my excitement to see what tips/techniques they will have.

Well, that wasn't as fun.  I would rather just tell them "Do you see her WALKING?!?!  Isn't it AMAZING?!?"   Instead, I'm trying to think about things they should know to prevent possible accidents . . . but that just forces me to imagine accidents.  And here I am again, pointing out the things that she can't do yet (stairs), and the things that make her different (suddenly locking up) . . . and that just makes me dwell (however briefly) on her can'ts and differences.  (sigh)

Then I try to explain her communication method, which is a combination of:

• signs (modified by her limited dexterity, these aren't ASL, but MSL---Maya Sign Language---Maya, Dave & I are the only ones fluent---although I understand more than Dave does, and sometimes even I am lost)
• sounds (so far on my list, "Mmm" means 8 different things---from more to cow, depending on the context)
• gestures (which are different from signs, such as pointing or waving arms)
• whines (which are, sadly, on the increase as frustration builds and she can't make herself heard).

And now I'm just agnst-ridden.  


The same fear that I've had, since she turned 2 and I started to imagine preschool.



Will they understand her?  


In my sad, dark place (where I don't sit for long) I have visions of her signing that she is thirsty, and no one understands-----or worse, they pull her hands down and tell her to stop (as her sign for water more or less looks like she's hitting herself in the face). 

It makes me tear up even to write that----my little girl begging for water in a foreign language and having the only-English-speaking adults saying "stop that".

And then I snap myself out of the drama and I'm glad that I'm writing this guide (and tomorrow I'm going to film a few video clips of the signs, make a MSL video dictionary so that the teacher will have a heads up).  They'll have a heads up.  And these are really good teachers at a  really good school, they've dealt with nonverbal preschoolers for a million years and this is probably old hat.   Really, I have to be glad that I won't be there to translate----the frustration of not being heard should prompt more concerted efforts on Maya's part to clearly communicate. 

But I worry for her.

I don't have a lot of "I wish I was just a mom of a typical kid" moments, but tonight . . .well, I had one of them.  I wish I wasn't writing a translation guide.  I wish she could say "I'm thirsty" . . . I wish she could walk around without the random seizing up and falling down.  I wish that my first-day-of-school jitters weren't compounded with the extra worries that come with our unique situation.

I'm not dwelling in it, because I'm also grateful---grateful that I get to write about her unique way of walking (because she's WALKING-and almost RUNNING) and grateful that I got to write about the sounds she makes (because she's trying) and the things she understands (like letters!  my smart girl). 

So I'm done for the day, and sleep will recalibrate my attitude.  Tomorrow: back at it.  And you know that Maya (the ham) will have a fabulous time making a video MSL dictionary.  :)

For the therapists, from the mom

It's been over 2 years since we started therapies.  We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members.  But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down.  So, here are my thoughts for the therapists, from the beginning.


Come on in, stranger.

Welcome to my shambles.

My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.

And here you are.

And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.


Please help her.



Please help me to help her.



We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front----

First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.

If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.

And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.

Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.

Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you---you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.

Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.

You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.

You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.

If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”

I'm no writer, but this guy is

I've tried three times to start this post.  The first time I even typed out something that was a few paragraphs long, then I deleted it.  Ironically, I'm trying to write about how I'm not a writer. 

This blog was started to fill friends and family in on my pregnancy, then to share pictures of Maya, then to also share medical stuff as it unfolded, and then I added some of my thoughts to it.  The things you read here sound like my thoughts . . . I'm informal, I don't follow grammar rules (due to a combination of simple ignorance and willful ignoring), and I have a tendency to-do-this-thing-with-the-dashes when I don't know how to make a rambly thought not turn into a run-on sentence that leaves a reader lost in the middle, thinking "huh?". 

I'm unpolished.  And often I look back on posts and think "Argh!  Why didn't I use a different adjective there?  Or add in a few sentences about xyz?"

Every so often I come across a blog post that inspires me with it's ability to get things out in a simple, clear, vivid and compelling way.  And so it was when a friend (Thanks, Kris!) sent this my way last week.

This post, along the lines of "spread the word to end the word", is fantastic.   (It also makes my humble post on STWTETW day look, well, mightily inferior, but que sera sera.) 

Please take the time to read it.  The author puts into (beautifully crafted) words the exact sentiments that I, and many others, feel.

If you have a family member with special needs (or work with people with special needs) and hate the word "retarded", this post will have you nodding and saying "Yes! That is how I feel.  Thank you for putting it in better words that I can."

If you're of the I-hear-what-you're-saying-and-I'm-sorry-it-hurts-you-but-really-it's-just-a-word mindset, I really and truly believe that this post will give you a type of insight and perspective that will be eye opening.  


(Just in case you can't see the hyperlink on your screen, here's the direct link to the post, on Robert Rummel-Hudson's blog, Fighting Monsters with Rubber Swords:  http://www.schuylersmonsterblog.com/2011/05/just-word.html)

The balance

Tomorrow we have our IEP meeting, when (hopefully) we will sign the paperwork that puts Maya in the preschool that we really like, and then a big weight will lift off our shoulders.  :)

A few months ago we had the preliminary IEP meeting, in which I clashed with the CPSE official.  I said that I wanted a bunch of after school therapies approved, he said that we should just start school and then come back with the school team in the fall if we all think Maya would benefit from more therapy.  I said that wasn't good enough (because really, with her evaluation results, she should totally qualify for additional services).  He said too bad (basically).  I ordered IEP books and planned a fight.

And then I changed my mind.

I asked questions of our therapists, and then spoke with other families whose children started preschool this past fall.  I researched.  I thought about school starting, schedules changing, no naps (the preschool doesn't have naptime), and realized that I only want Maya to have therapy maybe twice a week after school.  Then, I decided that the afterschool therapy we need to keep is the private oral motor stuff, which targets both feeding and speech (the therapist is PROMPT certified, for those who know/care about speech stuff).  She'll be getting OT, PT and speech at school, and I feel like her OT and PT needs are more typical than her oral motor issues.  That's where we'll need an afterschool specialist.

I don't make decisions lightly.  There was ruminating.  There were eyes-filling-with-tears.  There was anxiety.

Because if your child has special needs, you think a lot about needs.    The need for PT to address balance, walking, climbing stairs, core muscles, etc.  The need for OT to address fine motor skills, eventually holding a pencil, dressing and undressing, etc.    The need for special instruction to address play skills, attending to activities, interactions, etc.  The need for speech & feeding to address, well, speech & feeding.  And it's very difficult to determine which things are most important, which ones to focus the most energy on . . . but you have to make those choices, because it's really hard to work on all of them, all the time. 

But we made our decision, and we're ready to (hopefully) sign for the school!  And we're excited!  And hoping that it goes smoothly!  (Send good thoughts, the meeting is at 9 tomorrow morning.)

And when I was telling someone (someone lovely, who only has Maya's best interests at heart---someone who meant totally no ill will at all) that we're going to sign for the school and not argue for afterschool services right now (although I'm keeping an open mind about meeting in Oct/Nov to add services in) this person said, "You're only going to take what the school offers?"  And I said "Yep."  And they said "I think you should do more."

(I think I clenched.  Then it started to echo in my head.)

I think you should do more.

(and then my stomach dropped)

First off, Maya has a lot of people in her life.  She has 5 therapists (and another 3 that we used and then parted ways with), 6 doctors (and another 3 that we used and don't currently need), and a bunch of family and friends, too.   The decisions that Dave & I make on her behalf might not be everyone's ideal choices . . . but frankly, this isn't a democracy.  When I was thinking through our options, I asked for opinions and advice from the members of our team . . . but I'm not polling the crowd for votes.  We're the parents, it's our decision.  This is our life. 

I think you should do more.

Second, this is our life.  Life. 

Where does the balance fall between life and therapy?  It's a tough question, isn't it?  For the past 2 years, therapy has filled a large percentage of Maya's life (and I wouldn't change that if I had to redo it.  She loves the therapists, they love her, and she's making great progress).  We have 17 units of therapy each week . . . and when someone asks if we want to get together, I have to sheepishly explain that we're only free from 10:10-10:50 on day A, or from 12:15-1:15 on day B.  Despite the fact that Maya is only 2 and I'm a stay at home mom, we are constantly busy.   We are a revolving door of therapies and doctors appointments.   Since Early Intervention is a birth to 3 program, it was easy to think "3 years of intensity----we'll do everything we possibly can!"  (I even left work, remember?)

But now we're leaving EI and going into the school system.  And I'm starting to wonder . . . how long is this race?  It's certainly not a sprint anymore . . . is it a marathon?  A half marathon? How many years will Maya need therapies for?  

And in looking at a longer road, it's time to think more about the balance.

Because I certainly don't want to look back and wish that we did more.

I think you should do more.

I think we should do more, too.  

More time for playdates in the neighborhood. 
More time giggling at dogs in the dog park while Parker runs and we enjoy the sunshine.
More time walking at a leisurely pace (and less time glancing at my watch to see if we need to race back for therapy).
More time at the playground, or sitting on a blanket in the park.
More time for Maya to walk outside (instead of throwing her in the stroller because we don't have time).
More time to play at night before a super tired little new preschooler has to sleep.
More time for spontaneous trips---the zoo?  the museum?  the grocery store?
More time when it's just the 3 of us.
More time, more time, more time.

Not only am I thinking about Maya's therapy goals, I'm thinking about her life.  And our lives.  And I want to celebrate in September, and get her off the bus and play . . . not think "I'm sorry you're so tired honey but let's just hop in the car and run over to your PT/OT session." 

She will (hopefully) be going to a wonderful school where she will be learning and developing from 8:30-2 every day, surrounded by adults who are highly trained in working with children with special needs.   

So how about after she gets off the bus, 3 days a week she'll be therapy-free and just get to be a 3 year old girl? 

How about we don't stretch her to the point that she's asleep or in tears by the time Daddy gets home?

How about no more frustrated tears for me when I can't figure out what to cancel in order to fit in an appointment, or a playdate, or a birthday party?

How about we stop racing, and try to hit a sustainable stride?

So here's to tomorrow, when we will hopefully have a simple, amicable, stress-free meeting, the papers will be signed, and our spot in the wonderful preschool will be secured.

And (hopefully) here's to next year, Maya's first year of school, where we will walk the tightrope of therapy life and real life, and make steady progress and lots of memories.