Monday, December 30, 2013

Top 3 of 2013

Since I've only mustered the energy (physically, emotionally, cognitively) to put together 23 posts this year, doing a Top 10 list felt . . . cheap.  Here instead are the 3 top posts from this year, as determined by reader comments:

#3: "An Open Letter to the Parent of a Child with Speech Delays": In which I say the time for AAC is now. Do not wait for the experts, you can do this.

#2 : "I need a new word": In which Maya tells me that she needs me to add a new word to her talker, and I struggle to interpret her clues as to what the mystery word is. (Hint: There is a triumphant ending.)

#1: "Adding (bureaucratic) insult to (permanent) injury": In which I lay out the outrageous (truly, truly outrageous) process that we had to go through to renew Maya's NYC parking permit for people with disabilities.

See you all in 2014 :)

(Also, if you're not already following the Facebook page, I manage to get on there and chat much more frequently than I manage to put together new posts.)

Monday, November 25, 2013

Life hasn't been easy, and I am thankful

Recently, life hasn't been easy. It’s made me so thankful.

(That is not as disjointed as it may seem.)

I wish that I was generally grateful by default, but I’m not . . . which, I think, is pretty common. Maybe the resting state of not-perpetually-grateful is necessary for function, akin to the way that nerve endings become desensitized to a stimuli. In case you're not a science nerd, here's an example: when you put on a new sweater you may think Wow! This sweater is so soft! A few minutes later, the softness of your sweater is a thought of the past, and this is a necessary reduction. If you were constantly appreciative of your sweater’s softness, you wouldn't be able to finish a thought . . . “Ok team, in our meeting today---wow! Guys, my sweater is unbelievably soft!” Similarly, if you were perpetually thankful, your gratitude would be literally overwhelming . . . marveling at the wiring in your home that makes electricity possible, the drinkable water that comes out of your faucet, the strength and functionality of your non-broken legs, the fact that none of your fingers currently has a paper cut, etc.  

In this way, I've come to believe that the times that I am most thankful, most appreciative, are the times when I am existing in the neighborhood of a crisis . . . not really in a crisis, but close enough that I can see it, smell it, feel it in the hairs on the back of my neck. To use a mild example, it’s like when you are feverish and sick and can’t breathe through your nose and then suddenly you realize that your advil wore off a while ago , but your fever isn't back yet . . .and did you just manage to take a breath with your mouth closed?  That’s a moment in which you are thankful for the possible return of the health that, three short days ago, wasn't a blip on your gratitude radar. It’s like having that soft sweater pulled off, and you’re chilled and exposed, but only for a few seconds before you get it back and put it on and re-savor the softness and warmth, which seems even better than you remember.

Recently, life hasn't been easy. It’s made me so thankful

My five year old daughter can’t speak, but can communicate a great deal of her thoughts with her communication device. She often, however, shuns the device around new people and places, and she started kindergarten (in a new school) this fall. Sure enough, on many days I've heard that she was disinterested in using it in the classroom----but her teachers are annoyed by this (as opposed to indifferent). They know that she is capable and are quietly frustrated that she won’t demonstrate her abilities, and won’t communicate with them. I am thankful for their frustration, as it speaks to their investment in her, and their belief that she-can-do-more.

Maya meets with a reading specialist once a week. She brings home a folder of homework, new word families each week. We sit together to work on the worksheets, and while her focus is hit-or-miss, her knowledge surprises me every time. She will be a reader. She will be able to spell, to write. For a child who can’t speak, the ability to spell and type is invaluable . . . and I can see that she is on her way. I am thankful.

“Laundry mountain,” as I unaffectionately call the monstrous pile of clean-but-not-folded-or-put-away laundry on our couch, has grown to a size that leaves it often oozing off the couch. The kids help by running over, holding up pieces, and declaring their rightful owner (that’s Maya, holding up a sock and yelling “Will!”) . . . or by grabbing armfuls of clothes and toddling across the floor, leaving a trail as pieces drip from his grip (that’s Will). I re-gather and re-build the mountain, pulling out pieces as we need them. I’m thankful that at least most of our stuff is clean, and that dragging laundry around the living room has kept everyone distracted for long enough for me to slip away to the kitchen and get another cup of coffee.

Will has been growing, progressing, meeting milestones, and just being a “typical” one year old. It doesn't escape me, this typical-ness. I watch him toddle across the floor and find it amazing that anyone so small can walk upright. I see him use his tiny fingertips to pry open containers that I thought would keep him out, and I am blown away by how he enjoys the fine motor work that didn't (and still doesn't) come easily for his sister. I hear him, already, mimicking the words that I say to him, and using his voice to demand “more!” (or, more accurately,  “MORE! MORE! MORE!”) and I am thankful, for the challenges that he won’t have to face, for the way that his road has been paved and smoothed for easier traveling.

Maya has seen 3 new specialists this fall. Each appointment raises the anxiety of meeting someone new, a doctor who may or may not listen patiently as I try to summarize my child’s mile-long medical history in three-minutes-or-less. Each appointment forces me to square my shoulders and act strong enough to face new fears, as I lay down some piece-of-information-that-has-scared-me-enough-to-make-it-necessary-to-brave-a-new-doctor.  Each appointment is accompanied by various medical tests, with varying degrees of invasiveness, and so each has raised that am-I-doing-the-right-thing-guilt, the guilt that all parents face but somehow special needs parents seem to face more frequently, and with more on the line. But, so far, none of the issues that we've faced are life threatening, and I am thankful, so thankful.

The adrenaline crash after each new appointment leaves me in a tired-to-the-core, dazed-and-disoriented type of way. I am thankful for the days that Will naps and I get to doze, or for the espresso-and-sugar concoctions that warm my hands and wake me up (in theory, anyway) on the no-nap days.

Maya had a seizure today, a first, unexpected, with no warning signs or cause or hint that anything was coming. For 10 seconds, I was all-response-and-no-thinking. For 40 minutes of recovery, I held her and spoke calmly to her and didn't let her know that that everything had changed, that the ground beneath our feet no longer felt solid and strong, and that my seemingly irrational fears of the potentially-serious-health-complications-that-could-come-with-being-undiagnosed were now legitimate. I held her and I thought that I could have lost her just then. And for the rest of the day, I was thankful in a way that no parent-who-hasn't-thought-that-they-might-lose-their-child-before-their-very-eyes can possibly understand.

It’s been 2 days since my daughter’s seizure, and yesterday I found myself constantly watching her, searching for reassurance that everything is fine, that she is safe, that she is alert, that she is with me.  This morning my heart sped up when I saw her step unsteadily and stumble and tense, but she caught herself and kept walking and I saw that it was her “typical” unsteady gait and not a spasm or seizure.  I am thankful.

It’s been 4 days since Maya’s seizure and this morning I didn't think about it, or picture it, or have a little re-living it flashback for several consecutive hours . . . and I realize that time has started to work its magic (its healing-magic or its you’re-too-old-and-stressed-to-remember-everything magic , whichever one, they both work the same) . . . and I am thankful.

We spent four hours commuting today, because we still don’t have a bus. We hit a long stretch of heavy traffic, but when I said “Oh, look at this traffic!” Maya piped up from the backseat “Oh no!” and we laughed, and then Will laughed because we were laughing. We made it on time and no one cried.  In the afternoon, on the way home, we saw some Christmas decorations in a store window and Maya shrieked excitedly, and I was grateful that today there was no bus, and  that I got to share the time with her, to hear her first exclamation of holiday delight.

Tomorrow we return to the scariest of specialists, the neurologist, whom we haven’t had cause to visit in 3 years, 364 days. When I made the appointment it seemed the perfect distance away:  four weeks. Far enough away to let it fall to the back burner of my mind, but close enough that I wouldn't worry that we were waiting too long to be seen. I have been thankful for every day pre-appointment, for every day that I didn't have to agonize over potential future tests, that I didn't have to know what the doctor thinks about her seizure, that I can try to pretend this was something small that we can just ignore. I loved every one of these days.  I’m also thankful that whatever the news is, we have an amazing doctor, one who is smart and worth trusting. (And because I’m the type of girl who needs to have a back-up plan, I’m also thankful that we live in a big city full of smart second opinions, if need be.)

Having a child with an unknown medical situation means that life is lived in equal parts don’t-overreact-things-are-probably-fine and holy-crap-things-might-be-the-complete-opposite-of-fine. I am thankful for the other parents who share their stories, who remind us to celebrate the good stuff. I'm doubly grateful for those whose stories remind me to shut-up-and-be-thankful-for-every-freaking-second-because-it’s-easy-to-forget-that-the-seconds-are-numbered**. Earlier this year my friend Kate suddenly lost her son Gavin, a little boy who was the same age as Maya, also nonverbal, also full of spunk and life and love, and it spun my whole world around---I am so thankful for that (thankful for the reality check, obviously, not in any way thankful for the loss of Gavin). Because having a child like Maya can be a lot of hard work, a lot of heavy lifting (literally and metaphorically), and it could be easy to think “it’s not fair that things are so hard for us” instead of “we have no idea what tomorrow brings, so I will just be happy that today things are (our) normal, normal enough to feel exhausted by and tempted to complain about.”  

**As an important note, Kate is far too encouraging and lovely to think that anyone should “shut up and be thankful” . . . I am not that encouraging and lovely, and I tell myself to shut up and be thankful all the time J That sentence (and sentiment) belongs to me, not her. 

Recently, life hasn't been easy.  It’s made me so thankful. 

Happy (early) Thanksgiving. For those who are in the crisis zone, may this pass quickly. If you're in the neighborhood of a crisis, may your travels lead you in the other direction, without having to get an inch closer to the bad stuff. And if you're lucky enough to be in crisis free territory right now, soak it up. Don't lose sight of how soft your sweater is. 

Thursday, November 7, 2013

Running to stand still

I am overwhelmed.

This fall has been . . . hard.

I am on the treadmill of life, running  to stand still . . . and I’m not really even managing to do that. Every time I find my footing and start to gain ground, the speed picks up, and I am flailing.

It started with the busing. 

(The treadmill starts, a brisk walking speed.)

At the start of the school year, we had no usable busing. We were commuting for 4 hours a day (which includes diaper change time, parking time, traffic allowance time, and talk-to-the-teachers time). It felt unsustainable . . . Will would cry in the car, I slipped into driving with the assertiveness of an NYC taxi driver, and I thought about all of the work I could be doing instead of driving.  (I haven’t managed to bill a single hour since August, by the way.) I studied for exams by flipping through flashcards while I waited at stoplights. We play a lot of I Spy. My car became a great site for an archeological dig, with layers of toys (thrown over my shoulder at Will), snacks (thrown at everyone), and other random detritus (Maya’s a big fan of picking of leaves and then shredding them, so that’s fun). 

Two months later, we still have no busing, through a combination of DOE ineptitude (one (temperamental) person is in charge of all of this? And she doesn’t know what to do? And she doesn’t return phone calls or answer her phone? Really?) and the fact that a few weeks ago I stopped calling to follow up. Kindly save your “call a lawyer!”s or “I would just go to the office and sit there until they fixed it!”s . . . because I have and I did, and it hasn’t worked. I understand and appreciate your sentiments, and I would likely be very “Well-I-just-wouldn’t-stand-for-that-if-I-were-in-your-shoes” too, if I wasn’t all too familiar with the belly of the beast. Huffing and puffing and lawyers and noise sometimes works, and it sometimes doesn’t, and  . . . well, and then everything else happened.  And suddenly the fact that I’m in the car for a few hours a day was at the bottom of my problem list.

Maya’s transition to a new school has been rough. (Kick that treadmill speed up a few notches)

She is funny and silly and social. And defiant and strong-willed and anxious. She is a lot of work. While many parents have kids who are well behaved at school and then raise hell at home, we have (mostly) the opposite. (Don’t get me wrong, she can be a handful at home as well, but she works with me much better than anyone else.)  This has resulted in a large amount of communication with the school---chats at drop-off and pick-up, notes in the communication notebook, troubleshooting emails with teachers and therapists and the school director and the behaviorist, meetings (spontaneous and planned), and observations (her classroom has an observation booth—cool, right? I have spent a lot of time in that booth.). 

This is stressful, obviously. I worry about her lasting at this (very good) school. I worry about where she would end up if she wasn’t there. I worry about her long term education plan, as I would like to see her in a larger, inclusive classroom in the future, and her choices right now make it difficult for me to envision that happening. I worry that her staff won’t like her (not that they would treat her poorly, but that she would be that kid---you know, like if she’s absent the teachers would be like “Yes! A day off!”). I want them to see what I see---so much cleverness and silliness and possibility locked in a body that doesn’t work quite right and anxiety that makes her freeze up. I need them to believe in her, to enjoy her, to push her. I worry.

And she won’t use her talker. (Go ahead and increase the speed again.)

This isn’t a big surprise, but it’s frustrating nonetheless. As she speaks more and more, she pulls away from the talker. Whenever she is in a group setting (school, relative’s house, etc) she pulls away from the talker. She’s a sponge, a watcher . . you can see her wheels turning, but she doesn’t jump in easily. (That’s the way that I’ve always been, too---so I get it.)  Couple that with the fact that if someone new prompts her to use the talker, she may very well refuse on principle, or because she’s anxious (see above) and now it becomes a potential power struggle.

And then the medical stuff started. (The speed increases. I’m barely hanging on.)

The medical issues were all new (or new-ish, existing in lesser forms in the past but now coming to a head). We added two new doctors to our list last week (a GI and an endocrinologist) and tomorrow will gain a third (urologist). Every issue falls into the grey zone of could-be-no-big-deal-but-in-rare-cases-could-mean   . . . and that means a lot of tests and following things closely, because Maya likes to be a rare case.  She missed a few days of school while we dealt with one issue, missed another few days for appointments and illness, and I feel like we can’t catch a break.

I forgot about the panicked fear that accompanies new medical concerns. We’ve been at a medical cruising altitude for a while, autopilot on, just cruising along. I forgot about the way that a new medical situation shakes your whole world. I forgot about the exhaustion of introducing Maya to new doctors, the mind boggle that happens when they say “So, tell me about Maya” and I freeze, because where do I start? And what do I tell them? I can’t spend 2 hours listing every little thing---what if I forget to include some weird detail that turns out to be critically important? I forgot about the google dance---the way that I refuse to google symptoms and syndromes, because I don’t want to worry and I want to let the doctor handle it . . . but then the way that I feel a responsibility to google and research because I know Maya’s laundry list of signs and symptoms in a way that no doctor will be able to figure out during a consultation. 

I forgot about the anxiety that slowly builds as an appointment gets closer, the adrenaline rush of appointment day, and the no-amount-of-coffee-will-possibly-help crash that happens after you leave the appointment, regardless of whether the results were good or bad (or, most likely, ambiguous, with a follow-up to be scheduled in a few weeks).

Last week, we met with the new GI. Good appointment, thorough, and at the end we had created an action plan for moving forward. As the doctor and I pulled our chairs together to review the papers, Maya tensed up next to me and started to lower to the ground. I thought that she had started to lose her balance and decided to sit on the floor, but I looked at the way she was moving and something didn’t seem right.

And then I realized that she was having a seizure. 

(And the speed hits the max, and I fly off the back, and I fall to my knees, and I am done. Done.)

Maya is not a seizure kid. Prior to last week (a week ago today, actually) she had never had a seizure.  This was not on my radar.

In a former life, I was an EMT. I have emergency training, and (academically) I know seizures. I know to clear the space, not to put anything in the patient’s mouth, to let them lie in a safe position until it is done.

I was down on the floor in an instant and pulled her onto my lap. I spoke to her quietly but with an edge of panic in my voice.

I know that the vast majority of seizures are self-limiting, they end on their own. I have heard that the seconds feel long.

So, so long.

It was done quickly, but I can still see her curled, propped in the space between my chair and the examining table in the room, her hand shaking, her eyes staring ahead. And when it ended (quickly, maybe 10 seconds) she was disoriented, she didn’t turn to look at me, she was sweating and pale and nervous. She started to cry, and the doctor and I looked at each other in disbelief, neither fully sure what had just happened, both in slight shock. That minute of initial panic gave way to forty minutes or so of recovery, then hours of phone calls to the pediatrician (multiple times), the neurologist, Maya’s school, family (it was really fun to call Dave at work and break the news).

The seizure was the thing that stopped the treadmill. The straw that broke the camel’s back. The thing that brought me to my knees.

I surrender. I have been beaten.

But there’s an odd relief to surrender.

With every issue, the one that preceded it seemed smaller. Driving to and from school seems like a silly problem when your child starts behaving in ways that exhaust everyone, to the point that you worry whether she will alienate the people that (desperately) need to be in her corner. Bad school behavior seems small when you have concerns about your child’s health, are starting supplements, running tests, and googling potential new issues.  And the stress of running tests and meeting new doctors for potential health problems that will be manageable with supplements or medicines or surgery or whatever suddenly seems very small when your little, ponytailed five year old has sunken to the floor and is seizing in front of you.

Very small. So very small.

The problems are still there (and more, bonus run-of-the-mill problems: piles of laundry, an apartment that devolves around me much faster than I can attempt to clean it up, bills that aren’t paid on time, etc), but they seem so much less important. (And I also know that the past year or two of medical cruise control were a luxury that some families don’t get.)  Now I have the biggest problem, the fear of medical unknown. I haven’t been nervous about Maya, medically, in years----but this is the reality of an unknown genetic syndrome. It’s the gift that keeps giving. Will she have more seizures? I don’t know. Are seizures typical of her genetic syndrome? I don’t know. Could they increase in number? In severity? I don’t know.

I know that tomorrow we will meet a new doctor and possible run some tests, and that at the end of the month we will see the neurologist and possibly run some tests. More importantly, I know that tonight, we are all home and safe. I know that Maya had a good-ish day at school, and that Will didn’t cry at all during our commuting time.  Maya was silly after school  and Will is toddling everywhere with his little Frankenstein-ish waddle. The kids are tucked in and dinner is done and right now, things are quiet.  Tomorrow life will go on, and I’ll jog to stand still, but I’ll probably fall a little further behind and that doesn’t seem like a big deal anymore. I remember now that I can’t take anything for granted, even the crappy-too-fast-treadmill-times, and I’ll will my feet to keep moving and hum a little tune to myself and remember that nothing is forever, in more ways than one.

Tuesday, October 8, 2013

Motor Planning & Language Learning (with video)

If you're just here because you like to see Maya, stick with me through the first few (more informative than usual) paragraphs. There's a cute new video at the end, and Maya's having a great time telling jokes about being sick.

Prior to the spring of 2009, I had never heard of motor planning. That spring ushered Maya into Early Intervention and introduced us to physical therapy (well, we were introduced to all-of-the-therapies, but physical is the one relevant to this story). Our therapist taught me about motor planning, which is basically the way that you execute any movement---your brain knows/figures out what to do, the message is sent to your muscles, your muscles execute the plan, and success! If you're not sure what I'm talking about, try this---touch your nose. If you just touched your nose, that means that your brain sent a message to the muscles in your arm and hand, telling you to lift your arm, bend at the elbow, curl all of your fingers except for one, move towards your face (at a speed that is fast but not too fast) and touch (but not hit or stab or tickle of pick) your nose.

This probably seems like nothing (and let's not talk about how it pains my science teacher self to generalize down to "your brain sent a message"), but it's a big deal. If you've worked with people with disabilities, or stroke victims, you would know that when something is amiss with a person's ability to motor plan, life becomes very difficult. Motor planning issues are the reason that Maya still can't step up onto a curb without holding a hand (or bending over and holding the curb, which she does if she gets impatient waiting for a hand)---it's too complicated to balance, lift a foot, balance, lean forward, put the first foot down, lift the other foot, balance, put the second foot down next to the first foot, and do it all without falling over. 

When I began searching for communication apps and/or devices for Maya, I was surprised to find that none of them took the role of motor planning seriously (except, notably, for PRC devices---but their small device was too small for us, and the language system in the larger device was still a bit too big for then-3-year-old Maya). The big communication apps on the market had words that moved around. Let's say that I started Maya off with 9 words, with a screen like this:

When she was ready to move to 12 words, everything moved. The buttons would shrink to allow more words in the screen, and she had to relearn it all. Imagine what would happen if we jumped from 9 words to 30 words---everything moves to new places. 

It doesn't make sense.  No child should have to re-learn how to say a word, ever. Once they have the motor plan to tap-tap and produce a word, the sequence should always be the same.

You use buttons (in the form of a computer keyboard) everyday . . . and you have the motor plan to access the letters quickly. What would happen if, every night when you went to bed, all of the keys on your keyboard hopped around and changed position?  

Not cool, keyboard. Not cool at all.

Suddenly using the computer would be overly complicated, because you would be learning a new motor plan, instead of letting the ones that you have already learned run automatically. 

When we found Speak for Yourself, the communication app that Maya uses, the incorporation of motor planning into their app was groundbreaking.* We started using the app with only 6 or 7 words "turned on," but as we added new words the orginal 6/7 never moved. The fixed positioning of the words meant that she never had to relearn anything---once she knew how to say "milk" she would always know how to say "milk." 

Look where the HELP icon is, in the top right-ish area.

Now look how HELP is in the same spot, even with all 119 words lit up.

This is kind of an abstract concept, until you get a chance to see it in action. About a month ago I was asking Maya questions about the previous week (she had just gotten over a nasty virus) and recorded this.  I thought the word "medicine" was turned on (lit up) but it wasn't---watch as her finger traces perfectly along the empty row where the button for medicine should be, before she lights up all of the vocabulary and hits the button. (With the keyguard is on you can really see that she is tracing the exact horizontal row where "medicine" is located.)

See? Motor planning! The same way your fingers know how to type your name without looking, Maya's fingers know how to say medicine with two (very specifically placed) taps. 

In April we had Maya's routine annual eye check-up. The ophthalmologist, who is very nice, was intrigued by the talker and asked several questions about it after the eye exam (which included dilating the pupils) was completed. Maya used the talker to answer a few questions, about friends at school and such. The doctor turned to me and said "You know that she can't see those icons with her pupils dilated, right? She's doing that all from memory."

Not memory, doc. Motor planning. 

*The "LAMP: Words for Life" app, which came on the market last year, also works in accordance with motor planning principles. According to some AAC folks, you can also heavily reprogram some other communication apps to get them to work in accordance with motor planning principles, but that's a little out of my league yet :)  

Thursday, October 3, 2013

If this doesn't warrant a return to blogging, what would?

So, I didn't mean to take a month off.  The devil (ok, the DOE, but they share many attributes, no?) made me do it.  Maya started kindergarten on September 9th, so tomorrow will be the end of her fourth week of school. We still don't have busing. Her school is a bit of a hike from here, and when you add in time for bathroom and diaper changes and snacks and talking to teachers, Will and I are commuting for around 4 hours a day.

This leaves me with enough "free time" to keep our home a 1/4th clean, to cook dinner 2 or 3 times a week, to barely keep up with the class that I'm taking this semester, and to keep arguing with the DOE and office of transportation about busing.  I didn't even manage to bill a single hour for my job in the month of September. Much like my over-used car, I am running on fumes.

But it's worth it, because Maya's school is good. We're still settling in, but they understand communication devices and jumped right in with the talker. They are firm and consistent with the I'm-going-to-test-every-single-situation-and-person-here Maya that emerges in new settings. They see her strengths.

Speaking of strengths . . .at back-to-school night I listened to curriculum discussions and then wondered where Maya's literacy level (letter recognition, etc) is. I picked up a book and asked her about a few words, and she surprised me. Yesterday I wrote a few sentences, and she actually was able to read them with the talker.  I tried again at breakfast this morning (because nothing counts until it's video documented, right?), check it out:

Literacy is so, so, so important for Maya, and other AAC users. Once you can spell, you can say anything---even if you don't have a button for a particular word. Just a few weeks ago she was using the starting letter sound to try to tip me off as to the new button she wanted me to add to her talker . . . once she can read and approximate spelling, she can learn how to do the programming herself! (Oh boy. I can only imagine what will end up in there.)

This is where I would typically sum things up, but I'm too tired to even come up with an ending. Today was kind of a lousy day, and this video was my silver lining. There you go.

Friday, August 23, 2013

Creating a Keyguard for an iProduct/Tablet (learn from my mistakes)

I am an overplanner. It's a characteristic which has generally served me well . . . I overpack (but am rarely unprepared), I'm an excellent troubleshooter (bring me a lesson plan and I'll show you the areas where things may unravel), and I'm a solidly good editor (just don't check this blog too carefully, since I often just think "eh, good enough" and run with it).  So when we decided to try to help Maya switch from a full-sized iPad to a mini iPad and realized that she would need a keyguard (which doesn't exist), I was fairly sure that if I sat and thought about it for long enough, I would be able to create one. And not just create an eh, good enough one, but bang it out of the park on the first swing.

(cue the laughter)

Yeah, it didn't work . . . not initially, anyway. But I did learn a few things, create something decent on the second try, and figure out some tips and tricks that I think would be helpful to any parents/professionals who decide to do something similar on a tablet/phone/iPod.

Maya is using a full communication app called Speak for Yourself. Her talker is an original iPad in an iAdapter case, outfitted with a durable keyguard. The keyguard is a gamechanger for her----preventing a large number of mishits, allowing her to communicate rapidly and accurately.  Here's the problem: the iPad + iAdapter are big. She's a little girl. It's challenging for her to carry the device, to set it up on a table, etc. As soon as I saw the mini iPad and mini iAdapter I knew they would be a much better fit for her----but there was a big problem. Due to the large number (120) of cells in the SFY app, there is just no way for any company to make a plastic keyguard for it---the strips of plastic would be slivers, bound to splinter off.  We waited for a different keyguard to hit the market (sure that someone would design one) . . . but no luck (yet).  Finally, I decided to see what I could figure out on my own, and this is the best that I've been able to do (so far).

mini iPad/case (left), full sized iPad/case (right)

What I used:  screen protector (any old screen protector is just fine), Viva Decor Glass Effect Gel Pen (transparent color), pointy q-tips
This glass effects pen was undoubtedly the perfect choice---it goes on slightly opaque, which allows you to see what you're doing. It dries clear, hard, and without heat . . . so you don't have to be concerned about heating the iPad screen, as you would if you were to use hot glue. It comes in a squeeze bottle and it's not challenging to make lines that vary from fairly thin to pretty thick. It's also very forgiving---easy to wipe up with a fingernail or pointy q-tip if you happen to make a mistake. (Or many mistakes. Not that I would know anything about that.)

Important tip: If you're going to create a keyguard on a screen protector, you must do it after the screen protector has been applied, otherwise you won't be able to smooth out the air bubbles. First apply the screen protector, then you make the keyguard on top of the already applied screen protector.

about to start

This shows how the gel goes on opaque but dries clear. I had applied a second (wet) coat to the half on the left, while the right shows the first (clear, dry) coat.

My Really-Well-Planned-First-Draft-In-Which-I-Made-3-Crucial-Mistakes
Even thought this draft has a few key design flaws, I think the pictures do a good job of illustrating what the keyguard looks and feels like:

The Stuff That I Messed Up

Crucial Mistake #1: Think about every screen configuration, and account for it as best as you can. I tried to do this, but didn't fully succeed. Have a look:

1. If applicable, make sure to leave space open for the slide-to-unlock bar! (I remembered to do that!)

2. If your app contains a scroll-able pop-up screen that always pops up in a fixed location, leave a space open to make scrolling easier. (This is the word finder box in SFY, which always pops up in the upper left hand corner of the app and is scrollable). 

3. Don't forget the keyboard! If your app has an in-app keyboard, take it into consideration. This is where things started to fall apart for us---with one layer of gel, the keyboard looked fine, so I stopped thinking about it. By my fourth (ever widening) layer, many of the keys were obstructed----you could still press them, but you couldn't see what letter you were pressing. Considering that literacy is so essential to AAC users (and, well, everyone) it's not very nice to obstruct the key labels.

Here was the first draft. Oops:
Good luck finding the P, the Y, the . . . well, about half the letters, actually.

 To correct this I had to get a little bit crazy. I ended up building something that slightly resembles a maze, with small openings to account for the letter labels. There was much squinting and muttering during this process.

I did the easy, non-keyboard-involved part first:

And then switched back and forth between the screens to figure out the gaps. I also took a screen shot of the keyguard screen and had it open on my laptop when I was working on the main screen, to make things a bit easier.

*if you've got an eagle eye you may notice that the horizontal lines are slightly higher in this picture that in the original keyboard shot---the reason for that is coming up

4. Think outside the app---what about the main settings page for the iPad? Luckily since the gel is directly on the screen, if you accidentally cover a button that you need to push, you can just push on the gel and it will activate the button (that worked in the first draft picture below). However, if anyone else will need to do any programming or work controls on the device, you might want to keep things as clear, readable, and accessible as possible.

First draft, not very accessible:

Second try, with the "Enable Programming" row cleaned up:

Crucial Mistake #2: If you need to obscure something, obscure pictures---not text. Literacy is the big goal---don't take the words away. In my first draft I tried to follow the lines between the buttons perfectly, but as I added (more aggressive) layers and the lines thickened, some of the text was obscured:


In the second draft I made the horizontal gel lines just slightly above the divide between the buttons. It's hardly noticeable that small amounts of the picture bottoms are missing.

Crucial Mistake #3: Leave space for extra layers. And apply extra layers carefully. Don't get all the-first-one-went-on-so-thin-and-easy-that-I-can-put-this-next-one-on-more-thickly-and-save-time. The time you save in layer application won't seem so sweet when you've accidentally obscured text or buttons and realize you need to start over.

What We've Ended Up With:
I've corrected the mistakes above. It's helpful, but not amazing---Maya would still benefit from something that would prevent more mishits. (She hits buttons with her knuckles while she's reaching for something else with her pointer finger.)  That being said, it's only been a week, and we're going to sit tight and see how much she's able to refine her movements and increase her accuracy. And I'm probably going to add a few more layers.

Happy keyguarding :)

Monday, August 12, 2013

"I need a new word"

To know that your child can not say the things that she wants to say is nearly indescribably painful. To watch your child develop more or less silently, watching and listening instead of jumping into conversation and interactions, (as you search frantically for solutions that-aren't-coming-fast-enough-I-mean-come-on-she-can't-say-anything-at-all) is a type of heartbreak that is sharp and and slow and steady . . .  not like having your heart smashed with a mallet, but more like having it dissected by a toothpick, one tiny scrape at a time. One tiny, tiny scrape at a time.

If I could give my voice to Maya, I would, in an instant. I'm sure any parent of a child with complex communication needs would do the same. Instead, we figure out systems and signs and devices. Maya's got her talker, along with a variety of nonverbal ways to get her point across and a spoken vocabulary of words and approximations that has undergone an impressive proliferation since the fall.

When we're home together, Maya uses her voice and the talker and gestures in a multimodal, nearly constant, communicative way, and we chat back (and model on the talker) . . . and while our communication isn't "typical" it is comfortable. It can almost feel like, when she draws on all of her various communication resources, she's not limited---like she has a wide enough menu of communication options that when she thinks of something she surely has at least one method that she could use to get her point across.

I would like to believe this is true. 

I tell myself that this is true.

This is not true.

She is limited, still. She thinks things that she can't communicate. We play guessing games and I think that we often are able to figure out what she is trying to say, but not always. 

A month ago I wrote on Facebook about an exchange in which Maya was trying to tell Dave & I something and we had no way of figuring out what she was trying to tell us. She couldn't show us, couldn't sign it, couldn't say it clearly enough that we understood, and then she pulled her talker close and turned it on she hit the button that said "I need a new word" . . . and yet we were powerless to add the word she wanted, since we had no clue what it was. 

(scrape . . . scrape . . . scrape)

This afternoon it happened again. Maya had just finished having a snack, and she turned to me and carefully said "Too wah." 

Me: "Too wah? What's 'too wah'?"
Maya: "Too wah. Too wah. TOO WAH."
Me: I don't understand. Can you tell me with your talker?
Maya: (pulls the talker over, turns it on, opens the keyboard and types "S")
Me: S? 
Maya: "Too wah." (typed "S" again)
Me: Does it start with an "S"? 
Maya: "Yeah."

At this point, I grab the video camera. Dave wasn't home and I was hoping that if I played this back for him later he might have an idea about "Too wah" that I was missing. 

This is what I recorded. This is what it is like.

She quit. She put her head down and she quit, because she could not will me to understand Too Wah. Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too.

She gave up.

And then she changed her mind.

The first time we couldn't figure out her mystery word, she gave up. This time she gave up, but only for a few seconds and then she came back. And this time she tried to spell, too! The fact that she thought enough to figure out the first letter of Super Why, and gave it to me as a hint---well, that's pretty big. (That's also indicative of why I'm so obsessed with finding an academic placement for her that will have high expectations, like literacy now-not later.)

We added the button, to the cell that she pointed to initially. (When I opened the screen to add the button she pointed to that cell again, clearly telling me where she wanted the word to be.)

And then we watched Super Why, which everyone loved. Even Will. (The music in this one is pretty loud, so be careful of your volume before you play it)

Saturday, August 3, 2013

Perceptions Drives . . . Everything

from the smart people at

Maya loses her balance and falls regularly. She walks the way a bowling ball rolls down a lane with bumpers---diagonally, occasionally veering into a wall and bouncing back to continue crookedly the other way. She seems unaware that her mouth often hangs open, which leads to drooling issues. She often has a hand or fingers in her mouth. When you speak to her, she may or may not look at you, or in your direction. If you talk to her when she is involved with something else it’s quite possible that she won’t even look up, and you’ll wonder if she’s hearing, or able to process, anything that you’re saying.  She may or may not answer yes/no questions reliably (favoring “yeah”) and so when you speak to her you wonder if she’s able to understand what you’re saying or just answering automatically.  You may know her (alleged, per her mom) favorite topics, and try to engage her in conversation, only to be met with blank, open-mouthed silence.  You may have heard that she can (allegedly, per her mom) use a fancy communication device, and you turn it on (thinking “this is way too complicated, with far too many buttons”) and put it in front of her and she looks away, and you say “tell me something with your talker” and she stares at you or slumps in her chair and smiles, teetering too close to the edge and looking sure to fall.


When Maya is excited, she can move with speed that I never would have imagined a few years ago. I hold my breath when she runs, each unsteady step seeming sure to lead to a vicious fall, but I am impressed with the way that she usually manages to steady herself. The surge in speaking that has happened over the past 10 months tells me that she’s starting to coordinate her mouth muscles in new, wonderful ways. Maya is clever and surprisingly funny. She likes to laugh and to make people laugh and will tell “jokes” that are only funny to preschoolers (like telling us that it’s rainy on a sunny day, or telling us that she wants an alligator for dinner---each followed by a cackle). She is creative, pretending that she’s taking her dolls for a walk not to the grocery store or the doctors, but to the amusement park where they all ride roller coasters. She has a memory that consistently surprises me (if I tell her before school that she can have a cookie after school, you better believe that her first words off the bus in the afternoon are “cookie, please”). I wish I knew how her brain processes things----all too often I see her focused on something so intently that I’m nearly sure she can’t hear me at all, only to have her suddenly turn and answer my question a minute or two later  . . .  as if I were rudely interrupting earlier and now that I’ve given her some space she’ll comply and answer my question.  She has reminded me about numerous appointments that I would have forgotten (“Monday! Speech therapy!”).  She is a master manipulator, and has learned to avoid questions and demands by creating a situation that requires the adult to abandon their request and responded to her instead----like threatening to drop something important, or dangling off furniture so that she needs to be repositioned, or putting her head down and acting as if she’s so tired that she couldn’t possibly continue. She keeps us on our toes. 

Perception drives expectation
When Maya was two and a half she was evaluated by the preschool section of the DOE (among other things, these evaluations determine whether children have impairments significant enough to qualify for a center-based preschool, where all therapies would be provided on site).  Her scores qualified her for services across all domains (speech, physical therapy, etc) but one number stood out: her cognitive functioning was in the 0.04th percentile for her age. This meant that out of all 2.5 year olds, Maya was in the lowest half of a percent, cognitively speaking. Based on the data from these evaluations, it seemed that Maya was severely, severely impaired . . . a reader of these reports could expect a child that was close to vegetative. Unable to walk, unable to speak, with almost no receptive language (about 2 words), leaving her unable to understand anything said to her. The lowest of the low. She needed a therapeutic preschool, where they will hopefully be able to make some kind, any kind, of progress.


When Maya was two and a half she was evaluated by the preschool section of the DOE, strangers who arrived with a flourish, loudly asked many questions, and then disappeared. She was shy, and her responses ranged from nervous to puzzled to noncompliant. The woman who would go on to determine her “cognitive functioning” was late, unengaging, and, well, not very good. The results come in the mail a month later, and while it’s never fun to get crappy test results, we see them for what they are (biased, ridiculous, a means to an end and nothing more).  Maya is signing, making animal sounds, playing in an imaginative way (little animals go in the barn, little people sit in chairs for a pretend birthday party, etc), and shows clear understanding of a million little things all day long. She’s got preferences and opinions, and she is determined.  She needs to go to a therapeutic preschool, where they will hopefully be able to recognize her amazing potential, and have the skills to work with a child with a sharp brain but an uncooperative body, to help her gain movement, knowledge, and the ability to communicate what’s going on in her head.

Expectation drives opportunity
Before Maya met her preschool teacher, the teacher had already met Maya. Although we didn’t have the concise, powerful sound bite that “expectation drives opportunity,” we had that understanding (Dave and I were both teachers, and we watched students rise to high expectations year after year) and we were certain to help Maya’s staff set the bar high for her. Prior to the first day of school, they received a packet of information about her, and video clips that showed some of her skills and translated her signs. We had already exchanged emails about her, and the main messages were “don’t let her trick you into thinking she doesn’t understand you---she always does” and “push her---she will keep impressing you if you keep pushing her.”  Maya had been assigned to the smallest class, the class of kids who are, by and large, the neediest of the school (that’s where those evaluations put her, and it turned out to be fortuitous, because the staff in that room was fantastic). Her teacher saw the strengths in all of the kids, and pushed. When she showed me ideas for a communication board, we ran with it at home, and turned it into a word book. The teacher embraced the word book and then supported our quest for assistive tech, despite never before having used a full, dynamic communication system in the classroom.


When the assistive tech evaluator (L) met Maya, she didn’t expect much at all. L assigned her a low tech device, despite our insistence (and Maya’s demonstration) that she needed so much more. L said “I only give these devices to students who can show me during the course of the evaluation that they are able to use it to make sentences.” This boggled my mind, as I couldn’t imagine preschoolers picking a system up so quickly---yet I was sure that Maya could do it eventually. “How old are the kids you typically give it to?” I asked, and she replied “9 or 10, usually.  Some are a little younger.” 


We were not willing to let L’s expectations control Maya’s opportunities, and fortunately, Maya’s teacher agreed. She kept her expectations high (and we hoisted the bar up a giant notch when we came into school with a new, huge AAC app, set the iPad on the table, and said “Yeah, we’re sure she can do this.”) . . . and because of this, we laid resources in front of Maya and let her try it all.  She had opportunities, particularly the opportunity to be pushed and supported into a large AAC system, that the majority of 3 year olds simply do not have (although I’d like to change that).   

Opportunity drives achievement
L, the assistive tech evaluator who determined that Maya should only use a simple device, had a plan for Maya. She explained that we shouldn’t overwhelm her with a system that would be too big, or too complicated . . . it would only lead to frustration for Maya, who then might reject the system and cease trying to communicate with it at all. We should start small. Maya would have a device that gave her access to 32 words at a time, a number that was small and manageable. Because the teacher could create 8 sets of 32 words, she could have a set for art, a set for lunch, etc. It might take time, but over the next year Maya would learn how to access the words, possibly even achieving some success with creating simple phrases and sentences.


We downloaded the big, full AAC app, and we had a plan for Maya. We would present words slowly, but (because of the very smart design of the app) she would always be able to touch a button that made every single word available to her. We would model as much as we could. We wouldn’t force anything, but we would become AAC users ourselves, immersing her in it, and we would leave the door open for her to follow us through (and maybe we would nudge her along a bit, too).  Grammar, mistakes, times when she pushed the talker away, a favorite word pressed ad nauseam . . . none of it mattered if she would be able to say things that were on her mind. We so wanted to know what was on her mind. If we were painting, we wanted her to be able to say “grandpa” if she wanted to paint grandpa---not to be limited to a predetermined set of 32-words-that-someone-else-thinks-Maya-might-want-to-say-when-she’s-painting. We wanted her to have all of the words, to be able to choose her words at any moment, the same way that any other 3/4/5 year old speaking child can . . . and she did.

She told us about the weather, she counted, she spelled her name. She told us her ideas about what we should do on a given afternoon, what we should eat for dinner, what song we should sing. She told us that she loved us, and who she played with at school, and that her ear hurt (it was an ear infection), and who she wanted to Skype with.  She showed creativity, the ability to analyze information, the ability to make connections, (kind of impressive) memory, wittiness, kindness, and sarcasm.  She could communicate, truly.

Achievement drives perception
In the fall, Maya will start kindergarten and leave the security of preschool behind. To find the classroom that will be the best possible fit for her next year (the most perceptive leading to the highest expectations and granting the greatest opportunities, so to speak) we have been assessed, evaluated, and interviewed within an inch of our lives.  In recent months we were asked (by the DOE) to tour certain schools, and several requested that I bring Maya for the tour/interview.  We toured the facilities, heard about class sizes, visited potential classrooms (with Maya wandering right into the middle of the action, of course).  The school personnel had looked over her case, watched Maya boldly step into the classrooms, and smiled in a satisfied way that said yes-this-will-be-a-good-fit.  Until we returned to their offices, and I put the talker in front of Maya, then ignored her and spoke with the other adults. It only takes a minute or two of ignoring before she starts speaking up (although if you try to interrogate her she can hold onto a stubborn silence . As she tapped out a full sentence to request a snack or a drink, I could see a flicker---“oh, wait a second . . . “---and as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think we’ll see there, hold on---what day is tomorrow, again?) the flicker grew, and they were wide-eyed, surprised by this quiet girl who had tricked them.  And maybe (hopefully), surprised by their misassessment.

And, in a mere minute, a huge perception shift. In the following minutes, the comments that Maya “was too advanced” and “wouldn’t be a good cognitive fit here” and “clearly needs to be somewhere where she will be challenged” and “is full of potential, wow!”

In the space of only three minutes Maya’s achievement with AAC reshaped their perception of her as a learner which raised their expectations for her academic potential and offered her the opportunity to not be relegated to an ill-fitting, limiting classroom . . .

In a month-ish, she’ll start in a new school, with a new staff and new classmates and not a single person that she knows. And so the cycle starts again . . . and I’ll be sending over a new packet . . . because I know that my girl isn’t easy to read, and I’m going to try to shape their perception, to show them Maya that I see---manipulative, sassy, stubborn, clever, and full of potential.  

Friday, July 19, 2013

This Is What A Great Dog Looks Like

For 3 reasons:

1. It's mindless fun for a Friday night (and a Friday night during a heat wave, at that).
2. Maya's laugh is sure to make you smile.
3. Parker is the best dog ever.


Monday, July 15, 2013

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.

Friday, June 28, 2013

It Takes More Than A Village

It might take a village to raise a child, but to raise a child with special needs, it takes a team. A specialized team. One team member to address feeding and speech, one to manage gross motor development, one for smaller fine motor movements, and one for special instruction. One such team became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started receiving therapies through Early Intervention, but I would guess it was right around 10-11 months old. She was little and adorable and we knew that she had some delays, but really had no idea how significant her challenges were or for how long she would need therapy.  I had mixed feelings about the therapies, some of which I’ve already shared. We had a very full schedule and it was difficult not to have some resentment over being tied to so many appointments per week, especially when I saw other women with babies in the neighborhood meeting for coffee, having playdates in the park, or meeting up at the playground. I would have fleeting interactions with them as I whisked tired Maya out for 30 minutes between commitments, determined to get some “normal” time into her life.

While the therapies were sometimes a source of frustration for me, the therapists (by and large) were not. Earlier this week I randomly ran into one of them in the city, and as I hugged her I couldn’t help but think that bystanders who witnessed the vigor of my attack/embrace must think that she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We lost a few (that’s a nice way of saying we gave a few the boot) before finally settling with the team that would carry us through until preschool, the team who would teach Maya and help her to grow stronger and smarter, the team who became my friends and sounding boards.  Each one of these women brought something to the table, and each played a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and development and milestones . . . they taught me how to be Maya’s mom, how to be the confident, capable mom of a complicated child.  Certainly, I would have been her mom (and a good one at that) with or without them---but they gave me practical guidance, tangible ways to aid in her progress, and (of equal importance) the camaraderie and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one else did---certainly not me, or our family, or friends with typical kids, or even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest answer---and if the answer was yes, we knew what to try . . . and when it was no, I got my first glimpses into just how outside-the-box Maya would turn out to be.  They could draw from their experiences with other kids who followed similar paths to a certain skill, they knew which toys or household items offered the most bang for the buck, and they could see when we were working hard, even if progress wasn’t coming as fast as we had hoped.

Together, the therapists and I learned when it was appropriate to push Maya, and when to back off.  We worked as a team, each provided the other with new bits of information about what she was able to do, or secret motivation tips. Every time that they confirmed my suspicions (It seems like she might drool more than other kids her age---have you noticed that? I’m not sure if that should be slowing down now.) or agreed with my assessment of progress (Did you see her reach across midline? Was she able to do that last week?) I became more confident in my ability to collect data, the sharpness of my observations, and the accuracy with which I would be able to discuss my daughter with the countless doctors that we were frequently visiting.  I can only see it now, in hindsight, but I needed the validation that they provided when they saw me working with and interacting with Maya—their approval helped me rest ever so slightly easier, knowing that we were doing the absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was frustrated or Maya was having a week of temper tantrums. I was at the end of my rope with appointments and reports and bad news and lack of progress, and the therapists became my sounding board. They were the only adults that I was interacting with, they were in my home, and they knew everything about Maya---it made sense that they were often my news-guinea-pigs . . . the first people that I would tell about a genetic test we were running, or an evaluation that had yielded surprising results.  Their thoughtful (as in full-of-thought, not as in kind) reactions, follow-up questions, and words of wisdom helped me to process things more deeply and figure out exactly how I would relay the information to our family and friends (and readers).

The therapists balanced out the well-meaning-but-not-very-informed input from those not privy to the reality of raising a child with special needs. Those who weren’t in my living room, on our gym mats, watching me stretch and position and move Maya’s limbs, who would say “Well, my doctor said that they’ll basically learn everything themselves with enough tummy time . . . maybe if she spent more time on her belly it would help?”  Those who weren’t in my kitchen, as I sat across from Maya with chewy tubes and used one hand to steady her head and open the side of her mouth while she cried and I tried not to clench up, who said “My friend’s daughter did the same thing---she was a really picky eater but they just kept offering the same foods and eventually she realized that she had to eat what they gave her.” 

Collectively, the therapists saw my eyes fill with tears more than anyone, ever. (I am generally not a crier.) And they did a great job continuing with rational conversation and pretending that it wasn’t happening, which was the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t obligated to do so, and that expression of love gave me the hope and belief that others would see how amazing she is and love her, too.  They treated her with tenderness, but also didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that table, sit up, and help put these markers away.).  They appreciated her sass and jokes, but forced her to get down to business and do her work.  They treated her like family, and (I believe) they looked forward to the time that they spent with her.  The honesty of their feelings for Maya—the fact that they knew all of her challenges and struggles, all of her stubbornness and sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her with open arms and loved her without conditions---it touched one of my first, deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that they would have if she was “typical”? What if she doesn’t have friends?  The EI therapists were her first friends.

For the therapists reading this, the ones who go above and beyond, the ones who love their little patients and listen to their (sometimes fragile) parents, the ones who go home at night and think about the families that they work with . . . thank you.  I’m thanking you on behalf of the parents who are tired, or angry, or stretched too thin, or emotional, or shy, or introverted . . .the parents who aren’t remembering (or aren’t able) to thank you themselves (I have been all of those parents, by the way).  We know that it’s not in your job description to love our kids, or to be our friends, but you are in a unique position---kicked into the inner circle of a family in crisis---and the ways that you offer support are making a critical difference in our lives . . . even if we can only see it in retrospect.  Keep up the good work. You are changing lives. Thank you.

Especially for KN, NB, VC and CT. Thank you.