Thursday, October 27, 2011

I will not be her limiting factor

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

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

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

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

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

But it's killing me.

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

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

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

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

I give her something new, and she tries to learn it. 
I'm the limiting factor. 

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

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

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

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

I want it because Maya deserves it.

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

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

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


I will not be her limiting factor.

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


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

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

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

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

Monday, October 24, 2011

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

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

Wait, no it wasn’t.

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

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

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

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

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

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

What a fantastic gift.  Seriously.

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

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

I damn well hope not.

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

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

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

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

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

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

Thursday, October 20, 2011

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

This week is just a little crazy. 
  • Mon: I had a job interview
  • Tues-Maya had a doctor's appointment in the morning. I had a support group meeting in the evening. 
  • Weds--I met at school with Maya's teacher, then took her to feeding therapy. 
  • Today-I worked at a consulting gig. 
  • Tomorrow-Maya has an assistive technology evaluation at school (I'll be going, too) -This happened much faster than expected, and I had an emergency phone consultation with an awesome AT guy last night to help me prep for the meeting. 
  • Saturday-I'm working at a different job
  • Sunday-Frantically clean up the house before Monday
  • Monday-A reporter (&camera man-shudder) are coming to meet with us about a possible story
Each of the 2 jobs required prep work and the trading of dozens of emails, as did the AT evaluation tomorrow.  Add to this the continued communication book making, iPad screen developing, writing, and general life responsibilities, and I am frazzled.  Maybe beyond frazzled, actually.  I'm kind of catatonic.  In the mornings, I am focused and multitasking.  When Maya comes home, I am animated and doting.  Once she's in bed, my eyes glaze over as I work on the computer, answer emails, etc.  I'm staying up too late, I'm getting up too early, and I'm willing myself to just make it through to next Tuesday. 

As is typically the case when too much is on my plate, I'm rushing and cutting corners, which inevitably makes more work for myself.  I entered my online banking code incorrectly 3 times today, got locked out of the account, and had to spend 20 minutes on the phone convincing them that I really am myself.  I'm wiped out.

Now that you understand my mental state, you'll see the humor in this story.

The job that I helped with today was grading standardized-style tests.  Last week I did some work from home to help develop rubrics for part of the test, and it was really enjoyable to work on something that was not special-needs related.  Suddenly I remembered that I used to have a career in academics, and I used to enjoy it.  I was really looking forward to sitting in a room full of adults today, coffee cup on my desk, #2 pencil in hand, and grading whatever chunk of the test I was assigned.

I opened the book to my section of the test and started grading my 3 short answer questions.  My brow furrowed as I skimmed the first answer, and I flipped back to take a look at the passage . . .

 . . . which was all about a boy who wished he could play in the NBA, but he couldn't, because he was in a wheelchair.



Screw you, universe.  All I wanted was a few hours off.  Just a little mental break. 

The last question asked "Why was Justin sad when he went to the NBA game?" and I had to read over 300 answers of "He knew he could never fulfill his dream of playing in the NBA because of his disability."


On a happier note, Maya went on her first class trip today!  Her class went to the zoo (which she loves).  Last night I made her a zoo communication board that she could bring with her today (just one laminated sheet because I knew the book would be too heavy to bring).  Her (fabulous) teacher emailed the parents some pictures, and my eyes teared up when I saw this one:

She used the board, and the teacher said she loved it.  She got to talk at the zoo.  And after she came home, she kept telling us "zoo! zoo!" (by pointing) and showing us all of the animals that she saw.  (If you ask her if she saw the penguins, she smiles and holds her nose---that penguin house is so stinky!)

 it's blurry because it's heavily cropped

This was cropped out of the group photo of all of the kids + all of their partners for the day.  Look at her clutching her words.  She's really getting attached to the word book, she knows it's how she can make herself heard.

Totally makes the late nights working on that stuff worth it, I think.

Tuesday, October 18, 2011

Maya get surprised by her favorite song (video)

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

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

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

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

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

Friday, October 14, 2011

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.

Monday, October 10, 2011

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. 

-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!

Tuesday, October 4, 2011

After the Airport: Reflections, and the Boats of Acceptance

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

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

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

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

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

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

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

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

It’s hard to learn to live on a boat.

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

So, you get a houseboat.

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

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

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

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

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

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

I think it’s a surfboard.