Tuesday, August 19, 2014

First Day of School Resources

We still have a few weeks before we return to school in NYC, but I see a lot of folks are returning already. (My apologies if this is too late to make it for your very first day!) Sending a child with complex communication needs (aka a "nonverbal" child) carries a special level of stress . . . will the teachers understand her signals? Will they view negative behaviors simply as acting out, rather than deciphering the communication behind them? Will they move her talker away if there are too many things on her desk?

Here are some of the resources that I send in with Maya (if possible I also email this to teachers/therapists prior to the first day, but I also send hard copies in the backpack), along with a few other tips to help smooth the way into a new classroom.

First, she brings in a packet of information about herself. I try to keep it brief but informative (2-3 pages, well broken up into categories and spaced out). Enough so that the teachers can get a nice synopsis, but not so much that they won't flip through it. It speaks about her personality, her talker, my personal view on speech and academic goals, and pertinent medical and behavioral information. A sample document (with some omitted information) can be viewed here. 

Next, she brings in a folder that contains resources about her talker.


In the folder is information relating to her communication device. I include two copies of each item in the folder, one to remain in the office of the SLP, and one to be available in the classroom.





The contents of the folder are:

  • An information/programming guide about her app for staff. I don't actually want the staff adding or deleting words until I know them and am sure we're on the same page, so I don't provide that information. My guide also includes links to videos of Maya using her app at home, so that they can see what she is capable of. 
  • An app map, care of the Speak for Yourself team. That file can be found in the "files" tab of the Speak for Yourself users group on Facebook. I laminate these so that they can take a beating in the classroom without getting ripped or wet.


The image and text on the front of the folder are the same as the information that I include on the back of her talker:


This is the file for the above image.

Finally, Maya and I make a booklet together that she can bring to share with staff and classmates. Here are a few sample pages from this summer's booklet:




One thing that I can not overemphasize is VIDEO. If you have a child with complex communication needs, get video at home---video of using their device, talking, reading, showing off skills. It's much easier for staff to embrace high expectations and presume competence when they get a glimpse up front of the awesome things that our kids are capable of.





Monday, August 11, 2014

The Merits of AAC Exploration

In recent months, AAC has not been my focus.

If you're gasping dramatically, chances are that you're one of our SLP/AAC friends, and if you're thinking "Oh thank goodness I'm not the only one who drops the ball," then chances are that you're living in an AAC family.

We haven't been focused on AAC because . . . well, because life. I've taken two (accelerated summer) classes in the past two months, Maya has started at a new school with a new staff, Dave has been on vacation, and the priority list just shifted all around. The talkers are always around, always accessible, and used a good amount, but I haven't really been teaching or modeling with any real level of commitment.

I've got grand plans (actually, really vague ones that mostly involve just a lot of modeling and some targeted vocabulary selection) at doing some AAC immersion for the next few weeks. Maya's summer school session ended today, Dave went back to work on Friday, and I'm going to be home with both kids until September. Add in the fact that I've got an injured foot (with a boot) and I'll have plenty of parked-at-home time, perfect for aided language input (aka "modeling", or pushing buttons on a device to show the AAC user how to use it conversationally, where to find words you're targeting, etc).

But this post isn't actually about modeling. Or teaching. Or aiding language development. It's about leaving kids alone and letting them explore their devices.

Will, now 22 months old, hasn't gotten a ton of modeling on his talker (for the reasons mentioned above). What he has gotten is (mostly) unlimited access to it. He insists on having it in his crib when he goes to bed for the night, and every morning I know he's awake when I hear the talker through the monitor. I have no idea what he's talking about most days, and a cynic would undoubtedly hear the disjointed words or repetitive again-again-again-again-no-no-no-no and say "he's stimming! he's just hitting random things!" . . . but they would be wrong.

By having unstructured time to explore his talker, without scrutiny or stress or goals, Will has the ability to play with it in whatever way he chooses. He can push the buttons at the top to learn about fucntions of the app. He can linger on favorite screens and study the little pictures. He can pop in and out of secondary pages and learn the location of words. He can find words that he loves the sound of (he really loves again) and "say" them over and over and over again. And his connection to his device grows, because he's enjoying it on his own terms---it's not a tool that he's being forced into using, it's a really interesting and powerful (and FUN) thing that he gets to use however he wants.

Two morning ago I sat with Will (who still looks a little sleepy in his pajamas, is sporting a few good bug bites on his head, and is clutching my cell phone in one hand and intermittently gnawing on the other because he's cutting teeth) and turned on the video camera. My goal was just to see what he would choose to do or say if we were both focused on the talker (the fancy speech therapy term for that is joint attention), but I didn't direct any sort of activity. I wanted him to take the lead, and I just wanted some baseline video . . . but I was actually surprised by what I saw. In his free exploration time, it turns out that Will has taught himself a lot of things about how to work the features of his app (Speak for Yourself). I've highlighted things as they happen in the video, but here's a list of what he does: uses the home key to return to the previous page, opens and closes the keyboard, clears the sentence strip, opens the search feature, types and activates the search feature, scrolls through a list terms. 

I didn't teach him any of this. And that's not to say that he's a baby genius, it's to say that he's a kid who has had a wealth of unstructured time (that's a nice way of saying that he's a second child and sometimes left to his own devices) with a talker . . . which has a lot of merits.




I wanted to share this because I think it really highlights the type of learning (and ownership of a device) that can only happen when kids have time to explore. ( And without sounding too salespitch-y, the babble and search features of Speak for Yourself make this type of learning really easily accessible to users, even users who are really young.) 


PS: For families out there who might be watching this and hoping to get ideas for modeling, this is not the video for that. I'm not doing a good job of modeling, because my goal was to get a baseline video of his AAC use before I really start active modeling over the next few weeks. I join in a few times (because I can't resist, and because it renews his focus when he sees me interact with the talker) but I'm not really focused on anything specific.

PPS: At the end when he says "Oh no See" he's pointing out that I paused his show, "Sid the Science Kid."




Tuesday, August 5, 2014

A small heavy box

Maya got new splints yesterday. Splints? Braces? Orthotics? It doesn't much matter what you call them, they are shiny and new and Maya is Christmas-morning excited about them. They must feel good, the way they stabilize her unsteady ankles, because she is eager to put them on and proud to show them off.

Yesterday was a rush of a day . . . I picked her up early at school (which is where the splints had been delivered) to take her over to her first day of AAC camp (where I stayed and observed). After camp I rushed her home, where my pit crew (Dave and Will) were waiting on the sidewalk to make a trade: I released Maya to them, they gave me a sandwich and new vat of iced coffee, and then I hopped back in the car to drive to my night class. I didn't get to really look at the new splints until I arrived home after class, and as I opened the door and came into the apartment they were waiting to greet me on the countertop.


I picked them up and admired the straps, clean and white and new, though likely not for long. Soon the threads on the sides of the velcro will start to fray. The little white cushiony thing that prevents the strap from overtightening on her skin will become more progressively dull, then it will loosen, and then it will be lost (spoiler alert: they always get lost). The suede-y soft inner white cushion pads will stay soft, but lose some of the supple squishiness that they have this week. Newness aside, what struck me the most was the length: cut to extend a bit past her toes in the front, these seem huge! Are her feet really this big? Do these really fit Maya?

Maya's feet had been abnormally small for years, which we were told was a typical side effect of not being able to bear weight and stand and walk (which typically causes feet to spread and grow more rapidly). The sheer size of these splints seemed to say "look how far my feet have come, look how far I've come."

This morning I crept into Will's room, to the high shelf in his closet, and pulled down a small shoebox. If I could hand it to you, the shoebox would feel light enough that you would wonder if there was actually a pair of shoes in there . . . but in my hands, it is a heavy box. Small enough to hold with one hand, big enough to hold years of progress. Light enough to balance on a loaf of bread, heavy with the weight of our worries and wonders and yes-my-baby-wears-splints and she's-almost-three-and-no-not-walking-yet.

Made of light cardboard, strong enough to hold our past.



I remember every pair of splints in that box.



I remember the first pair. She was fitted for the first pair in a clinic, wiggling and unhappy and not at all interested . . . and I was hopeful and eager and thinking "maybe this will be the magic ticket!" Picking the bold pink straps . . . trying them on her at home, watching anxiously to notice a change. Not noticing a change. Keeping the faith. When she outgrew them, we took a little break, because it didn't seem like they mattered much anyway.

I remember the second pair. She was fitted at home and we poured over the choices in patterns. For my cow-obsessed girl, finding a pattern with barns and farm animals was perfect. These were a different type of splint, and I recognized cautious hope as it bubbled up in me . . . these might be the ones, after all. I popped most of those bubbles, but a few remained. They popped themselves as weeks turned to months.

I remember the third pair, which we were fitted for at her preschool. The orthotists were so friendly and her physical therapist was excited about a new pair. I was happy that Maya was happy. Again, we searched through pattern swatches and she squealed upon seeing a green rainforest pattern that had alligators (a big love at the time). I remember how quickly she learned to take these off in the car, and I remember countless white pads being lost during those undressings. I remember her love of the splints, the way she wanted them on in the morning, how I knew that they must actually feel good . . . maybe like the way my knee brace eases the pull and pain on my weak knee when I walk? I'm not sure. I wish I knew what it felt like to have her feet, what the splints feel like around her ankles. I wish she could tell me.

And now, again, we begin with the fourth pair. She is blissfully excited about the blue butterfly pattern and didn't want to take them off yesterday. Part of getting new splints is evaluating the fit, and I'm supposed to check if any parts of her feet look raw or red, but she wouldn't let me take them off to check. "Maya, how do they feel? Are they good or tight?" I asked. "Doh" (good) she replied, with wrinkled brow, the subtext being don't-try-to-take-them-off-I-said-they're-good. I love them because she loves them, and I hope that they make her more comfortable. She is delighted, and I am happy for her.

We need to pick up a bigger pair of sneakers, and then she'll be in them more or less full time until they become too small, at which time they'll go to the small heavy shoebox. And I wonder, years from now, when I pull out pair #4 with the butterflies, what memories they'll bring with them.



Friday, July 25, 2014

No One Knows The Words A Child Cannot Say


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

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

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

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

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

This is a bit more accurate:



Because it's not just about moms:


Because 80s rap enhances any meme:



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


This is certainly true for me:


And to include dads, too: 


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



For the dads, too:




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

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


Because the bottom line is this:




There. Much better.

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

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




Thursday, July 24, 2014

They Said She Wasn't Ready (four times)

This post tells of the obstacles that we faced when we decided to pursue high tech AAC for Maya, and the ways that it has shaped her academic path. Some of it is kind of a review, but there's a great new video at the bottom, too. This relates directly to the (amazing) "Myth of AAC Pre-Requisite Skills" blog post that circulated earlier this week.



Maya and mini

My introduction to AAC came in a support group meeting (for parents of kids with special needs). I was talking about how I really didn’t know what Maya knew, or understood, and how I wish I could find a way for her to communicate. One of the moderators said “You should go see Mark, he does assistive tech” and the other nodded and agreed, and that night I went home and started researching and was blown away by the different systems and devices (and a very small number of apps) that were out there: a whole world that I didn’t know about.  

That was a kind of pre-obstacle in our path to obtaining AAC: no one told us about it. Too many parents are left on their own, with a passing suggestion or random message board encounter being their best chance at learning about AAC in the years-before-elementary school.

The first real obstacle, for us, was Maya’s age. She was 2 when we started pursuing AAC at home, 3 when we pushed for a DOE evaluation (useless) at her special needs preschool, and still 3 when the first app with truly accessible, long term language possibilities (that could work for a preschooler and grow with her through adulthood) burst onto the market.  We believed that she could handle a big system, despite the DOE evaluator’s insistence that that was the wrong choice.  Her teacher sided with us, and we decided that it was best to ignore the DOE (who had recommended a boring, static, cumbersome, only-able-to-hold-32-words device) entirely.

The second obstacle was Maya’s fine motor skills. Namely, that she had very little fine motor skills. At 6 years old, she still can’t hold a pencil correctly and write letters, or use scissors. She doesn’t have the hand strength to open a clothespin or to re-cap a marker. The idea that we wanted to put her on a dynamic screen of any type didn’t compute with the evaluators (“But how will she use this? You can see that she would have a lot of trouble hitting those buttons, or not hitting others accidentally.”). I mentioned a keyguard, which was acknowledged as possible, but the team seemed much more comfortable with the idea of starting with a few big buttons and working up to more and more (and shifting the vocabulary entirely around at each step). Apparently motor planning is a foreign concept in some circles. I was sure that if we could get our hands on the right system, we could think creatively and come up with ways to improve our direct access. (Spoiler: That’s exactly what we did, first with a glove and then a keyguard and then another keyguard.)

The third obstacle was Maya’s cognitive level. While her cognitive evaluation (which placed her in the bottom 0.04th percentile of her same-age peers) seemed laughable to us, and to her teacher, it was a clear data point for an evaluation team. And if 99.96% of three year olds are smarter than Maya, and they’ve never given a large AAC device to any three year old, then you can go ahead and bet that my kid won’t be the one breaking that streak.

Next, and perhaps most significantly (and frustratingly) came the biggest obstacle: negative behaviors. Maya is stubborn. She is willful. She is interested in doing only the things that she is really interested in doing, and it’s very difficult to coerce any sort of obedience or compliance if you are new to her (and “new to her” can mean that you starting working with her less than 6 months ago, more or less). She would not “perform” during the AAC evaluations. She would not show them what she could do (and, in a mindboggling twist, the team declined to view the extensive videos that I have of her independently using a communication book and apps). That led them to decide she wasn’t eligible for a big device with the reasoning that either she didn’t understand what they were saying enough to make sense of the device, or she wasn’t interested in it anyway.

Four big “reasons” that she wasn’t ready for high tech AAC. 

Four excuses that we ignored.

Instead of figuring out ways to clear the hurdles that they had laid before us, we walked away from their obstacle course and did it on our own.  (Not because we were heroic, but because hurdles are exhausting.)

We pursued AAC early and doggedly, because Maya had a right to say whatever was on her mind, whenever she wanted. No low tech system could provide her with that, so high tech was the only option, as I saw it. We were excited as she became able to request favorite objects, to make little jokes, to talk about the weather. We were delighted when she was able to come home from school and tell us who she played with, or what therapy she had, or what songs they sang that day.  But it wasn’t until a few months later, as we went through the “Turning 5 Process”, that we realized how fundamentally Maya’s early access to AAC was going to change her life.

“Turning 5” is the process in NYC through which children with special needs are re-evaluated and then matched with a school, and classroom, that fits the child. I am certain that without her talker, Maya would have been sent to a classroom that had very low academic expectations, and I witnessed this near-miss happen five or six times. This story, from a former blog post, describes those encounters:

During this process we were sent (by the DOE) to tour many schools, some of which requested that Maya also attend the tour.  We toured the facilities, heard about class sizes, and visited potential classrooms. The school personnel 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.  But when we returned to their offices, 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 for.ev.er.) .   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

Now Maya is 6 years old. She is starting a new year, in a new classroom, in a new school.  She is still stubborn, and the new team is slowly teasing apart what she knows and what she doesn’t know---which is, to varying degrees, a mystery to us all. Again, AAC is the game changer here, the light that helps illuminate some of her more surprising strengths. She is reading, although it’s hard to discern how much she reads, because her speech is still so amorphous. If a skeptic listened to Maya read, they could easily say “Well, that might not really be reading. I mean, I hear the starting sound, but who knows if she’s really saying the correct word? She might be saying ‘fish’ instead of ‘first.’” But when she uses her talker, it’s clear.  In this video she reads two sentences with her voice, and then I prompt her to read it with her talker, to check that she was actually reading the correct words.



She’s reading. The DOE said she was in the 0.04th cognitive percentile, and I'm sure that they would not have placed a kid in the 0.04th percentile on a track to be reading when she is five.They might not think that a kid who will lay on the floor instead of following directions is actually listening and learning, and no one would know that without the data that the talker provides.

AAC has given Maya a way to request and comment and give directions to those around her, and a way to tell me about things she sees and hears when I’m not around. And, in an unexpected (and surprisingly essential way) it’s given her the power to prove to the doubters, the nonbelievers, the skeptics and cynics and those who forget to presume competence, that a child who in unique and complicated and doesn’t always look like she’s learning may actually be quite clever, and capable of learning whatever you throw her way.


If you are new here and interested in learning more about AAC, please head over to this page, which is a great jumping off point.



Friday, May 16, 2014

The Limitations of Sign Language for Children With Speech Delays

Once upon a time, when Maya was little (a few months old) we started signing with her. Not because she had special needs, but because many people use sign language with little kids, who are often able to produce expressive signs before they can produce the same words verbally. We waited months for her to start signing back, which she eventually did---much to our delight! She learned many signs in the months (all the way up until she was 2.5, I think) that followed, we used baby sign language dvds, I even made a "Maya Sign Language" video dictionary that I sent to her preschool teachers so that they would understand her. Signing was great, because without it we would have had no way for her to communicate with us and her teachers. 

I look at that paragraph now and all of the shortcomings of sign language jump out at me (it took months for her expressive signs to come, she only learned dozens-not hundreds-of signs, despite having expressive signs I still had to make a translation video for her school staff to understand her). And before I start discussing the limitations of sign language for kids with speech delays, I need to be clear about a few things. Here are my disclaimers: First, ASL (American Sign Language) is an absolutely beautiful, complete language. For families who are a part of the Deaf community, ASL makes complete sense. This article is completely irrelevant to that experience. Second, I think it is valid for children to learn sign language, and I think sign language can be a great component of communication. I'll get to where it fits in below. 

But children who are slow to develop language, who have "speech delays", who have "complex communication needs", who are "nonverbal", who have apraxia/dyspraxia/oral motor planning difficulties, who have CP or autism or genetic syndromes, children who will NOT be attending a school for the deaf or supported in the Deaf community----these children should not rely on sign language as an alternative method of communication. 

Here's why:

1. Most people don't understand sign language. Children need to be able to speak to EVERYONE they meet (well, if they want to). Grandparents, cousins, the guy who works at the deli that you go to on Thursdays, their bus driver, the secretary at their school, the kid that he just met at the playground who has Spider-Man on his shirt, the nurse in the doctor's office, the doctor, the grandparents of a friend at a birthday party, the lady in front of you in the Starbucks line who is asking about whether she likes the movie Frozen, the teacher, the substitute teacher, the gym teacher. These people do not all understand sign language. Which leads to . . . 

2. A child should not need to rely on a translator. (Even if that translator is you, and you are awesome.) Here's why: it forces them into the backseat of their own conversations. Imagine if you went out with your spouse (or best friend) and every time someone spoke to you, you signed and your partner had to speak back for you. You're one-step-removed. Kids who are struggling with language issues, who are learning the ebb and flow of conversation, need to be empowered with a way to speak up, to step in to conversation, to join. (Passivity is a big personality trait that develops among kids who have speech delays---they're used to other people speaking for them. As a side note, the other big trait is anger/tantrums because they have no other ways to get their points across, and behavior becomes their method of communicating.) On top of that, our kids (who often have multiple challenges) are already shadowed by their parents enough. I didn't want to have to be all up in every conversation that Maya ever has.

3. Fine motor issues lead to garbled signs. Maya does not have the dexterity to move her fingers in ways that would allow for the clean, clear formation of the vast majority of signs (hence the "Maya Sign Language" translation video---even people who speak fluent ASL wouldn't understand her signs). Teaching sign language to nonverbal children with fine motor issues as their primary means of communication is basically spending hours helping them learn a language that effectively no one (besides you and your child) speaks. It doesn't make sense.

4. I think that AAC is faster to learn than sign. (Please note the "I think", as this one is totally anecdotal.) I learned ASL alongside of Maya, and then I learned to be an AAC user alongside of Maya. AAC is, in our experience, much faster. I wondered if this was because Maya's motor challenges make it difficult for her to execute new movements, but then I realized that I'm able to learn words via AAC more quickly as well. Her app can hold over 13,000 words. I don't think I would be able to remember that many signs. 

Will (19 months) is learning to speak. He is also learning sign language. He is also learning AAC. This type of multimodal whole-language approach is, I believe, where ASL fits appropriately for children who have complex communication needs. It's great to have a child who has multiple ways of communicating, and there's no downside to teaching ASL in conjunction with using a more-universally-understood AAC device/app.  But, in my mind, the AAC is not optional. 

See for yourself:




The criticism: Here are the most common complaints that I hear from people when I share my thoughts on the limitations of signing:

1. Signing is better because kids always have their hands with them, you don't need a cumbersome binder of cards or an iPad. And what about places like the bathtub where a kid can't have an iPad anyway? Maya's iPad mini isn't cumbersome, and there are several option now (like a waterproof electronics camping bag) that would make it fully submersible in a bathtub. But that's totally beside the point, because signing is great for you to use with your kid----as long as you're also providing them with a way to communicate with the non-signing population.

2. My child loves sign language and has learned over 200 signs! That's so great! But most 3 year olds already speak over 200 words, and by age 4 we're well into the thousands. That's a lot more than 200. Keep signing but make sure there is another way for her to express the thousands of words that she likely understands but does not know how to sign.

3. It's his choice to use sign language. I'm certainly not going to argue with the choice of a child who has communication challenges. Obviously, how he communicates will be his choice. But (in my humble opinion) he needs consistent exposure to multiple modes of communication. My kid is going through a cartoon phase and has gained buttons in her device for nearly 100 characters in the past few weeks----it's all that she talks about, to anyone who listens. She would never be able to learn and imitate this many signs this quickly, and no one that she spoke to would know the obscure signs for "Jiminy Cricket" or "Handy Manny" or whatever. I think that multiple modes should be taught and encouraged, and the child can use a combination of them to get their points across to a diverse field of communication partners.

Our kids with complex communication needs need the same early access to AAC that many of them have to sign language. Sign language is a great component of multimodal communication, but without an AAC option that can be universally understood we are limiting their ability to independently interact with peers, family, friends, and professionals.

Wednesday, May 7, 2014

She wants to name names

This isn't actually a blog post (she said at the start of what is clearly, literally, a blog post) it's a request for help. SLPs/AAC people/AAC parents/Special ed folks/Smart creative people, I need input.

Maya has become very fixated on characters. Any characters. All characters. Any cartoon character that she sees, she immediately asks what it's name is, and demands that we add a button to mini (the talker) with that character's image and name. This is tricky, for a few reasons. On one hand, if she wants a button that says "Mario" (from Super Mario Brothers, which she saw in a birthday party catalog),  then she should get one and be able to say it. (This is the generally right answer, and what I feel like is correct when I think about AAC use and AAC users---if they're asking for a way to say something, they should get it.) On the flip side, what we are seeing (after weeks of this behavior, and the addition of many, many cartoon characters) is that she's kind of a name hoarder. She is combing through books and catalogs searching for minor characters in shows that she doesn't watch (eg: someone named Isa from Dora?), getting a new button for that character, and then never using it again. Like, ever. She seems to just be collecting the names.

This is a screenshot of one of the pages in her talker that contains characters.

There are a few issues here.

First, the reason that this is becoming so frustrating to me is because more than 50% of Maya's conversations at home now involve her calling our attention to a catalog or book, asking "who's that/what's that?" and then excitedly saying "Mini please!!!" (translation: make a new button for this right now!). If we make the button, she is extremely excited for about 7 seconds, then moves on to find a new character. It's exhausting. It's frustrating. I want to talk about other things. I don't even mind talking about the characters all day, honestly, if we did more than just name them. Which leads me to  . . .

Second, I have tried to think creatively, to redirect, to extend, to use these characters (which are obviously a huge motivator for her) as a jumping off point for other dialogue (spoken and via AAC) and she's not biting. I've tried saying "I don't know his name (because really, sometimes I don't) but let's talk about him! We could say that he is red, that he has a purple hat, that he looks like he feels happy, etc etc" and she just either pushes for a name (directing me to look it up online) or moves onto to someone else, in the hopes that I'll know the next character's name.

Third, and this is of substantially less importance to me, but I'll put it out there anyway as I think that it's a common concern for AAC parents: for an AAC user, vocabulary takes up physical real estate. I would rather not fill so much of her talker with minor movie and tv characters that we will likely never encounter again . . . but that's not really my choice, as I see it. Luckily, the app that we use (Speak for Yourself) has a lot of fillable space, and I imagine that if that space was ever filling it would be past the years of wanting all of Dora's friends to have buttons. I will admit to redirecting her when she's going page-by-page through a toy catalog and asking for each character, line by line, but if it comes up more than once it's hard for me to say no. (And I did attend a training once where participants were encouraged to help AAC users to think creatively to build words rather than adding large numbers of specific buttons, like "mad-gas-car" for Madagascar, but I think that's kind of disrespectful and would be really angry if, as a user, that's what I was expected to do. I won't do that to her.) I could make a low tech character board (a laminated sheet of paper---or multiple sheets) with tons of character pictures and names, but I'm fairly certain that she will just bring me the low tech board and the talker and direct me to add all of the names in, which puts me kind of back in the same spot.

So here are the two core questions:

1. How can I redirect her from spending so much time asking me to add character names? The best I can figure is to limit her access to magazines (like a certain amount of time per day) or limit her characters-per-day (like, we can add three new people tonight, but that's all).

2. How can I use this character love to drive vocabulary building? She still primarily uses her talker for communication via single words and some phrases, and I would love to use these characters to come up with some fun activities that will really get us using more core words, more verbs, more adjectives, more everything. The problem is that I'm lacking the specifics---which verbs/adjectives/question words would be best to target, how could I set up a few games or activities to target this? It's easy enough for me to make some laminated characters (printed, cut out, laminated) or character bingo sheets or  . . . anything.

I've got half-thought-out ideas for games where she has a character line-up and I model things like "She is wearing a dress. She is tall. She has green eyes." and then Maya picks the character----but then I wonder if that's too many different verb forms and whether there's something more simple and repetitive to start with, but I can't come up with it. Then I think about hiding characters around the apartment and modeling "Where is Mario? He is in the kitchen.  He is in a cabinet. Open the door!" etc and have the same questions about vocabulary

I'll make anything. But I'm overwhelmed at where to start, and rather than spend a few hours trying to sort this out on my own, I'm asking for ideas first. This is why one takes the time to build a network of amazing people, right?

I appreciate any and all input on this. Thanks from Maya, Belle, Lightning McQueen, Mike Wazowski, Dora, Spiderman, Abby Cadabby, Curious George, Maisy, Batman . . . and friends.

Thursday, May 1, 2014

The Ghost of Playgrounds Past

The winter is ending, and the advent of spring has released dozens of toddler-and-caretaker pairs from their apartments and out to the playgrounds in our neighborhood. Will and I are one such duo, eager to get outside and play after a few dreary months spent indoors. Last year he was too small to really do much at the playground, and I had been looking forward to this season with him---big enough to run, steady enough to slide, mornings filled with fresh air and sunshine.

I knew that at the playground, I would be a first time mom again. Even now, Maya lacks the agility and balance, the self-protective reflexes and coordination, to explore freely at a playground.  I knew that Will’s playground abilities would develop rapidly, that his coordination and capabilities would be surprising. I knew it would be different, and I looked forward to that difference.

The playground was a loaded place for me and toddler Maya. It was bittersweet to the fullest possible extent of that word. The sweetness of doing something “normal”—not at the doctor, not at a therapy appointment, not doing exercises or assessments, just a mom and her little girl at the playground. But the bitterness (oh, the bitterness) of being different- leaving the safe bubble of home behind and seeing what other two year olds could do, could say, could eat, could . . . everything. They could everything. We sat on the equipment and watched kids race around us. She crawled, then walked with a walker, then walked with my catching hands nearby, and I was a focused assistant. She needed me so much. Will is already independent, running away, bidding me to watch and follow but shunning my help. So I watch and chase and play and smile and feel like I’m getting off so, so easy.

I didn’t anticipate that returning to the playground with a new toddler would trigger a visceral response---that type of physical memory that gets stored somewhere so deep that it’s beyond thought and ingrained on some sort of deeper, fundamental level. The way that revisiting the empty halls of your high school as an adult calls forward anxiety or wistfulness or nausea, or driving down the street that you grew up on kicks up the emotions of childhood. It’s not remembering, it’s re-feeling.

The moment I open the gate to the playground and push the stroller in the re-feelings start to rise, a familiar swirly tide of anxiety, determination, self-awareness, pride, sadness, protectiveness, bitterness, all pulling at my ankles. And then I look down at Will in the stroller, already trying to free himself from the straps and yelling “Uppy! Uppy! Uppy!” and I remember that I don’t need any of those feelings this morning. My feet are solidly on dry land, but the phantom tide feels strong enough to bring me to my knees.

I watch him play.  I’m on my knees.

I watch him climb and run. I wonder what the balance is between promoting independence and being neglectful, since Maya always needed me at her side, less than an arm’s length away. I side-eye the other parents, gauging the appropriate hovering distance.

I talk about typical kid things with typical kid parents. I’m an impostor, surely they can see that I don’t fit in.

I am amazed by his abilities, the way he moves and interacts. I narrowly resist the urge to look around and call to the other parents “Did you see that?! He did the slide like it was nothing! And look at your kid, climbing the stairs without your help! This is amazing! Are you soaking it in? Are you noticing? Are you waiting for the other shoe to drop?”

Because doesn’t this feel too good to last? Too easy?

Is this really how life is for most parents?

Do you people know how easy this is?

How lucky you are?

I mean, how lucky we are.

Where is the self-consciousness of having a toddler who doesn’t toddle? It’s over there by the swings, I think, where we would swing and swing and then sit in the shady patch with chalk and then . . . well, I guess we’ll just swing again. Where is the anxiety over rushing home and making it to the next therapy appointment? It’s right here, in the perpetual checking of my watch, in the way that I keep stopping myself from saying “2 more minutes” when I remember that really, we have the whole morning. Where is the awkwardness of avoiding small talk with other parents, talk of ages and milestones, favorite toys and favorite games, all seeming other-worldly? It’s there, by the park benches, where I used to feed her jars of baby food and try, so hard, not to overhear the conversations of the other caregivers. And it’s here, in the way that, without thinking, I avoid eye contact so as to not accidentally stumble into a conversation. Where is the angst, the sadness or frustration or this-isn’t-fair-ness that I would push down but remember later, in the dark, when I couldn’t fall asleep and couldn’t block it out any longer? It’s here, right here.

Oh, it’s here.

And I don’t know what to do with it.

Oddly, it hurts more now than it did then. Back then I was sincerely happy to take Maya out to the playground, and I was good at focusing on the positives and enjoying our time together. But now I see what it is like to be the mom I would have been, and I’m realizing that the playground experience that I had a few years ago was a shadow of the experience that I’m having now. And it hurts. I have pity for my mom-of-toddler-Maya self, and I have hatred for having self-pity. I have sadness that our experiences together were more difficult, more lonely, more stressful than my time with Will is going to be, and I have guilt over that sadness. I have happiness that I get to be the mom that I would have been, and I have sadness that Maya doesn’t get a re-do, that her one shot through those years is done, that she had her toddlerhood and it will be very different than her brother’s.

I thought this restart would be refreshing. It would be a chance to do motherhood in the normal way, to blend in, to not be set apart. But now, given the opportunity to blend, it feels like fraud. I find myself wishing that I had battle scars, visible and raw, something that would let people know that the my parenting path has not been theirs, it’s been thorny and rocky. A scar that is jagged, and fresh, but only occasionally slightly visible, peeking out from the neckline of my shirt when I move in certain ways. A scar that makes my outside match my inside, that relieves the feelings of fraud by giving a heads-up to the other playground patrons that though I am here having fun, not talking about my scar, I am nursing a wound. That I am sore, that it’s still a little raw, and that I’ve gone through something.

I’m going through something.

This is going to be painful, this business of reliving motherhood.

But I think that it’s also going to heal me, in some small dark places that I didn’t realize were in need of healing.







If you related to this, you might also relate to this (which is my favorite blog post, ever) and this (other playground reflections)



    

Friday, April 25, 2014

Speak for Yourself is 50% off TODAY ONLY

The Speak for Yourself communication app is 50% off today only, in honor of Undiagnosed Children's Day. This app can start small enough to be used by babies, and grows large enough to be used by adults. On sale today for $99.99.

This link will take you to a page with a link to a blog post that explains why this app tops the other big name apps: The Best Communication/AAC app.

 And this link will take you to their iTunes page:  Speak for Yourself in iTunes.


Thursday, April 10, 2014

An iPad case that's toddler-proof

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

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

When the Gripcase arrived, I was skeptical.

front


back

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

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

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

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



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



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

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


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

Pros:

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

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

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

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

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


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


Cons:

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

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

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

That's about it.

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

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

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