This Shouldn't Even Be Their Choice

                                      knee scooter                         comprehensive AAC app

Imagine this: you've had an accident, and one of your legs was badly injured. You endure a period of rest and immobility, and then the time comes for you to get back on your feet---but you can’t. The weakness, the pain, the coordination issues . . . that leg is just not ready to do its job quite yet. You meet with a physical therapist and a doctor and discuss different tools that can aid your mobility, and you ask about the one-legged scooter that you have researched diligently online---it will take the weight off of your bad leg and allow you to move quickly, keeping up with everyone in many environments (let’s pretend you live in a fully ramp-accessible world for this imaginary scenario). You have been waiting for a long time to get off the sidelines and are eager to get the scooter, which can help you get around until you have your strength.

Imagine this: You are a child who has no speech, or very limited speech. You are frustrated (or rage-y, or sad, or dejected, or deflated) when you want things, or feel things, or want to comment on things, or have a question about something, or want to boss someone around, or need to get someone’s attention, or have something really funny to say . . . because no one understands. Or some people understand sometimes but then other times they are wrong and it’s not-really-even-worth-telling-them-they’re-wrong-because-you-can’t-figure-out-how-to-tell-them-the-right-thing-anyway. You meet with a speech therapist and a teacher and they sometimes are very fun but sometimes it’s all just hard work. Your mom comes to talk with them, and you hear them talking about something, some device, that will help you talk to people. You’ve been waiting for a long time to get off the sidelines and you need a way to communicate, effectively, with as little effort as possible, until you have the means to communicate with speech.

But then, something strange happens. They decide that you shouldn’t get the scooter just yet.

But then, something strange happens. They decide that you shouldn’t get a device to help you communicate just yet.

First, they aren’t sure that you can even use a scooter . . . they’ve never seen you even show an interest in scooting. They say that the scooter is so fast and effective that you may just lose interest in ever trying to walk independently. They think that you may just perseverate on the fun of wheeled scooter, spinning in circles, being totally irresponsible as you speed aimlessly around, never bothering to actually wheel yourself where you are supposed to go.  They think that the wheeled scooter is very complex, what with the moving pieces and the brakes and the features that need to be learned . . . and based on your previous interactions with them, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something without wheels, to work up the mobility hierarchy. It is determined that you will start with a cane-if you are successful you may graduate to two canes, then to crutches, then to a wheeled office chair (to be used only when you’re seated in your office, possibly to be expanded to home use if you are successful), then to the wheeled scooter. The wheeled scooter is a very good option for those who have mastered the other mobility options, but they don’t want to overwhelm you with too much speed and freedom. They’ve always given the cane first.

First, they aren’t even sure that you can use a speech generating device, or whether you would be interested. They say that an SGD is so stimulating and fun that you may just lose interest in even trying to speak with your voice. They think that you might just stim on the pictures and buttons and sounds of the device, hitting button after button and never bothering to learn how to actually communicate with it. They think that a full-bodied AAC device/app is too big: too many words, too many options, too much navigation . . . and based on what they’ve seen from you, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something no- or low-tech. It is determined that you will start with a low tech device with a field of 6 choices (to be determined by an adult who will pick the things that they want you to “say”). If you can manage a field of 6 it will increase to 12, then maybe to 32, and then (if you stay focused for a few months) possibly to something with a dynamic screen and more reasonable vocabulary size (to be used only at school during snack time initially, then also in circle time, and possibly to be expanded to home use if you are successful). The dynamic screens of AAC apps/devices are great options for those who have proven their capabilities, but they don’t want to overwhelm you with something too complicated from the start. They always give low tech first.

This doesn’t seem fair.

This doesn’t seem fair.

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer to scoot perpetually—managing the equipment, not being able to move with your peers as they cross uneven terrain, having to haul the scooter everywhere you go---the scooter is more work, and less ideal, than natural locomotion.  Next, you may spin some wheelies or race around as you get a feel for the scooter, but this is part of the process of learning how to navigate on wheels. Third, while the mechanics and maintenance of the scooter will take some getting used to, there’s no way of knowing if you can do it without trying (but you’re pretty sure you can do it). Lastly . . .  a mobility hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand? (or, in this case, under leg)

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer using a talker to speaking**-managing the talker, not being heard easily in crowded places, having to carry it everywhere you go---the device is more work, so much slower,  and less ideal than natural speech.  Next, you may press a lot of buttons to learn where words are located, but this is part of the process of learning how to navigate a speech generating device. (And even “stimming” on one word over and over is often a way of self-teaching that word and the melody of it.)  Third, while the navigation, transporting, and usage of the talker will take some getting used to, there’s no way of knowing if you can do it without trying (but you probably can do it, with the right modeling and support in your corner).  Lastly . . .  an AAC hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand?

Being able to navigate in your world seems like a basic human right. You are entitled to the tool you need to make this happen.

Being able to communicate is, indeed, a basic human right. You are entitled to the tool you need to make this happen. 


You tell the therapy team that their proposed course of action is invalid, for the reasons outlined above. You advocate for yourself and insist on getting the tool that you need. This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

You don’t say anything. Because you can’t.

This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

Except you don’t get a vote.

Every child who can’t speak deserves access to a full, robust, comprehensive communication system. If you have one of these children in your life*, you’re either on the team that is presuming competence and fighting for a big system (immediately), or you’re on the team that is standing in the way. 

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*Please note that I included the parent in the treatment team of the nonspeaking child. This isn't accidental. Sometimes the roadblock to a great device is a professional-but sometimes it's the parent who is hesitating.

**PS: And honestly, so what if an AAC user prefers using their device to speaking? There are reasons that AAC use is a better option for some verbal users sometimes (particularly in times of stress or exhaustion). Why should it matter how they choose to communicate, as long as they have the ability to do so?

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Related post:  The Gatekeepers, in which I discuss the AT evaluator that tried, twice to underserve Maya---the first time providing her with a low tech 32 button system, the second time trying to take her communication app away and replace it with something "simpler."

  

Adding (bureaucratic) Insult to (permanent) Injury

It started with a realization: children Maya’s age were walking and running, and she was creeping unsteadily with her walker. Because of this, she was relegated to a stroller a lot more than other children her age . . . which seemed counterintuitive to the whole learning-to-get-around-independently goal. Walking independently would come slowly, with devices and splints and soreness and falls, and long distances would be more or less infeasible, at least for a solid few years. And so three years ago we applied for a handicap parking permit for Maya, an accommodation that she clearly qualified for and would benefit from.

In New York City, a handicap parking permit is a bit different than the ones you see outside of the city. Here there are no “handicap spots” on city streets, but you are allowed to park in a variety of areas (No Parking, No Standing Except Trucks Loading And Unloading, etc) that are typically off-limits to others. The permit lets us park closer to our destination, which allows Maya to walk to and from the car, just like any other 4/5 year old would. These permits are worth their weight in gold. If you could sell them on the street (which you can’t, as they are all hologrammed up and have your license plate number clearly printed in huge font on the front) they would go for a pretty penny. 

They aren’t easy to get.

And that’s ok. That’s fair.

Getting the permit proved to be a long process. We had to obtain a non-driver's photo ID for Maya (and if you think your license picture is bad, Maya probably has you beat). We waited to get her ID card in the mail, we filled out an application, and then we had to have a packet filled out by Maya’s pediatrician. The packet asked questions about the nature of her disability, the extent of her limitation. It asked, prominently, if this is a permanent condition. He said that yes, this is permanent. (And, every year since, he says that yes, it’s permanent.) After submitting the application, we waited to get assigned an appointment with a city-appointed physician. (This step, I assume, is to prevent city-dwellers from calling in favors from their doctor friends and getting permits willy nilly.) Then we waited until the date of our appointment. Then we went to the city medical building, met with the doctor for 5 minutes, and he told us that a decision would arrive in the mail. So we waited again. Finally, the permit arrived in the mail. 

It took about nine months from the time of our initial application to the time that our permit arrived. But we were happy. For a year.

The permit only lasted a year, despite the fact that my child has a genetic condition that is not going to change. Although she makes slow and steady progress, walking is hard work, climbing stairs is exhausting, and balance issues add an element of danger to any path we travel. Despite the “yes, this is permanent”, the pass only lasts a year.

Ok, fine.

After the first year the papers arrived to renew our permit, and I was elated to see that we didn’t have to see the city doctor.  It’s a gimme . . . you can get your pass renewed automatically.* 

(*except not really automatically because you have to resubmit papers, and if you miss the deadline then your permit would expire and you would have to start all the way back at the beginning again, do not pass go, do not collect $200.)

Another year passed. This fall we got the big packet again, forms for our pediatrician and the promise of a city-appointed doctor visit. Our pediatrician filled out the forms (yes this is permanent) and I mailed them in. As the days ticked by my anxiety level climbed---we hadn’t yet received an appointment with the city doctor, and yet our permit was soon to expire. A call to the permit office told us that they were backed up and we would now* receive a temporary pass to cover the time until they sent us an appointment time.

(*now that we called, of course, because even though they knew that they were going to miss their deadline and our permit would expire, they weren’t planning on making sure we were covered unless we took the initiative to point out that we were being left in the lurch. You know, like: “If you miss your deadline then no permit for you but if we miss our deadline and you didn’t realize it in time, then no permit for you.”)

In January, an envelope arrived. I assumed it was the notice of our appointment time with the city doctor. I was so wrong. Below the picture I've pulled the essential quotes from the letter:

In reviewing your application, we find that the additional medical documentation is required.

                -chromosome labs

                -CT scan: brain

                -developmental pediatrician report

                -psychological evaluation

                -IEP

                -school special ed

                -neurology

                -details of orthotics

The above requested documentation should be on your provider’s letterhead and forwards within thirty (30) business days of this notification . . .

You have got to be kidding me. 

First, a minor (but infuriating) detail---they fudged the date. While the top of the letter proclaims Date Mailed: 1/7/2013, the postmark quietly confesses that it was actually mailed a full week later. This is not the first time I’ve received correspondence from this agency with date discrepancies, although it was the first time that I thought to save the envelope and take a picture. With only 30 days to gather a lot of obscure medical documentation, they were trying to shave 7 off the top. A 3 week turnaround on a plethora of papers that need to be collected from hither and yon seems, well, unfair.

  

Not cool.

Second, a major (and also infuriating) point---most people don’t have copies of their lab reports at home. Generally MRI results, genetic lab results, developmental pediatrician reports, etc. remain in the doctor's office, in your file. Or files, actually, because the MRI would be in the neurologist’s file, the genetics labs would be in the geneticists’ files (that’s plural geneticists’ files, because we’ve worked with more than one geneticist), etc. That’s a whole lot of paper-gathering that has to be done. Add to that the fact that some doctors need written requests for copies of files and some hospitals need requests to be made in person with photo id. Some places are happy to fax things over, but not all people have access to fax machines. 

Third, some of these things don’t exist. “Details of orthotics”? What does that even mean? Is that something that I write? Or the physical therapist, or pediatrician, or the place that created the orthotics?  It’s clear as mud, and I’m fairly sure that if I don’t read their mind correctly our permit could be denied on a technicality. 

And now that the small stuff is out of the way, let’s get down to my two major contentions: relevancy and privacy. Clearly, when we applied for a parking permit, based on medical necessity, we must expect to divulge some personal medical information. As a parent, it’s troubling to send your child’s medical information into the great wide open, but that’s the concession that comes with asking for a medically necessary allowance. So I try to make peace with that. 

I understand that they need to know about her disability, and the pediatrician paints a clear picture in his forms and recommendations and yes it is permanent. I respect their request for information about her orthotics (do they really exist and what exactly are they for), and can understand why they asked for her IEP (does she really have physical therapy goals for this year) and progress notes from the school (which could possibly say that she’s met her PT goals and is now the champion at the 40 yard dash).  Perhaps I can even understand the request for genetics labs, although they are so intensely personal, because we claim that our need for a permit is due to a genetic anomaly. (Although truly, a letter from the geneticist should be fine. The details of my 4 year old’s genetic labs aren’t really necessary.)

But why the psychological evaluation?  There’s nothing psychological about our need for a permit. At all. Truthfully, had we not been going through the kindergarten process we wouldn’t have even had a psychological evaluation to offer.  Why the CT scan of her brain? First of all, it was done in 2009. Second of all, it was normal. Third, it has no bearing on this situation.  A report from her developmental pediatrician? And her neurologist?  Well, we haven’t seen the developmental pediatrician since 2011, and no word from the neurologist since 2009, but sure, I can see why you would need to see those reports, both of which are grossly outdated and neither of which have anything to do with Maya’s need for parking concessions.

It leaves me feeling like I have no choice but to expose an unnecessary amount of my daughter’s private medical information. Because that’s exactly what I had to do.

It was infuriating. And it felt very unfair. And I couldn’t see any way around it. 

So I sent it all in. On time. Labeled with post-its. Via certified return receipt mail.

And I waited.  I thought to myself, They must have a plan here. Probably, if you have a child with a permanent disability, you see the doctor the first year, get an automatic-ish renewal the second year, have to send in bucketloads of supporting documents the third year, and then maybe you get a ten year pass or something. 

When the envelope arrived this past Monday, I tore it open and was shockedfrustrateddisappointedsoveryangry to see that the pass expires in November. This November.  8 months from now I’ll wait to see what they ask for next, and in which way I will be expected to declare she’s DISABLED! She needs SO MUCH HELP! Let me prove to you HOW DIFFERENT my daughter is and how many SPECIAL NEEDS she has and how it is PERMANENT, it’s PERMANENT, and WHY MUST I KEEP TELLING YOU that she CAN’T WALK FOR LONG and her BALANCE ISN’T GREAT and everything IS MORE WORK for her.

And everything is more work for me.

And SHE GETS SO TIRED.

And I get so tired.

I am so tired.

I shouldn’t have to fight annually for a parking permit.  I need to fight for therapies, and to fight for school placements, and to fight for her rights over and over again.  I need to fight insurance companies and to fight for assistive technology, and then to fight people to use the assistive technology that I fought for.  I need to fight prejudices and fight ignorance and often fight her as she is pushed and challenged and learning to fight for herself (I hope).

I shouldn’t have to fight, annually, for a parking permit.  It doesn’t feel right.  It feels like I’m being asked to jump through hoops and hoops, just for the sake of jumping and the hope that I miss a hoop and don’t get the magic permit.  It doesn’t feel fair.  I’m not trying to steal something or to pull a fast one, I’m trying to get a pass that will allow my daughter to walk to and from her destination, just like other kids her age. She deserves it, fair and square. 

It seems like it wouldn’t be much more work to grant a 3-, 4-, or (hey, let’s get a little crazy) even 5-year permit to families of children who have clear and permanent disabilities. If not, why not at least make the permit last 2 years, since there’s an automatic-ish renewal in there anyway.  Or maybe just ask for the personal medical records that are actually essential to determining whether a parking permit is necessary, rather than just checking (many, many) boxes at random.

And to add insult to the insults to the injury, the permit that expires less than a year from now came with the note below, which includes the request to return any inactive permit(s) in my possession (please note the fact that in the past two years it has never been mentioned that expired permits must be returned).  It ends like this:

Please note that failure to comply with this regulation by submitting the inactive permit(s) will oblige us to make you non-renewable and prevent us from issuing you any future Permits.

Of course it will.

I'm the mom, but I'm not "just the mom"

This is an open response to the types of comments mentioned in the first paragraph.  If you're not involved in special needs care and therapies, these abbreviations might help you out:  AAC= Augmentative and Alternative Communication, SLP= Speech-Language Pathologist, AT= Assistive Technology, ATP= Assistive Technology Professional.



Over the past few weeks I’ve encountered an interesting divide/debate . . . an undercurrent in some comments made online by professionals (SLPs, AAC specialists or AT specialists) that either state or imply the following:  Parents should not be able to just choose iPad apps to use therapeutically or with regards to AAC (augmentative and alternative communication---using an app to communicate, the way that Maya does) without deferring to a professional. 

For obvious reasons, these comments make me bristle.  They imply (and sometimes state) that parents are naïve and uneducated about apps/devices and are just looking for a quick fix.  They also imply that parents are choosing to take matters into their own hands, rather than acknowledging the far more likely alternative: we would love--- LOVE--- an expert to arrive at our door, thoroughly assess our child, select the appropriate AAC device or app, design a plan to introduce that app, train us in how to implement it at home using best practices, and meet with us regularly to help the family progress in using the AAC.  

Please.  Send them our way.  Or tell us where to find them.

Because I looked.  And I searched.  And I wasn’t successful.*

I live in New York City, and while the city is short on therapists (like everywhere else) it generally has a solid amount of resources, if you’re willing to search for, fight for, and wait for them.  We have been fortunate enough to have extensive therapies for Maya from the time she was about 10 months old.  I’ve come to know a lot of therapists.  Maya attends an excellent preschool for children with special needs, staffed with extremely knowledgeable professionals. I am plugged into a network of special needs parents who know “all-of-the-best-xyzs” (doctors, therapists, homeopaths, etc).  I thought, surely, that when it was time for us to dive into AAC there would be a handful of “experts” at our disposal.

I was wrong.  Well, mostly.

Last fall, when I felt like it was time for Maya to move from her Word Book and commit to a legitimate, long-lasting, high tech AAC solution (as opposed to just the customization of Proloquo2Go that I had toyed with at home), I did what all parents do: I asked the professionals. Because that’s what we’re supposed to do—ask the people who work with our children for input and advice.  Certainly, they are more informed than I am about the available options in communication technology, right? 

As it turned out . . . not really.

And let me be very quick to say that this isn’t their fault.  Special educators specialize in meeting the diverse educational  needs of children with disabilities, but aren’t required to stay up to date on the changing field of assistive technology (which is a huge, rapidly shifting world, especially when iPad apps are considered).  Physical therapists and occupational therapists clearly weren’t the people to ask (except perhaps for physical access ideas).  And the SLPs?  I love our SLPs (all 3 of them).  The PROMPT therapist that we see focuses on oral motor stuff—she wasn’t going to guide our device selection.  Our home therapist loves and pushes Maya every week, and she knows a staggering amount about language development and eliciting sounds from my willful child . . . but AAC technology is not one of her areas of expertise.  Nor should it be, actually . . . or so says ASHA, the licensing body of all SLPs.

Per my friend the ATP: ASHA does not obligate SLPs to have expertise in AAC.  Most speech programs here in New York City offer future SLPs no more than one generalized class in AAC (and rarely have access to real devices or apps).  ASHA’s position is that the field of AAC is not owned by Speech, but rather based on experience:

"The SLP is expected to be able to recognize the limits of his/her expertise and issue referrals to appropriate colleagues as necessary."..."The SLP must acknowledge the need for expertise from other service providers who may include, but certainly not be limited to, physician, occupational therapist, physical therapist, vision specialist, rehabilitative engineer, teacher, psychologist, behavior consultant, and social worker. No less significant is input from parents, spouses, employers, and significant others.”**

Anyway, back to the SLPs:  The SLP at Maya’s preschool did exactly the right thing-she called in the assistive technology (AT) experts by writing a referral to get Maya an evaluation with the AT team that serves the NYC DOE.  At the time of the evaluation Maya had been working with the Word Book for 1-2 weeks and I could see how quickly she was soaking it up.  She had some experience navigating through screens on Proloquo2Go (an iPad app), although I was disenchanted with its organization.  I had already hosted representatives from Dynavox and Prentke Romich in my home, unbeknownst to the AT evaluation team, to evaluate their devices and determine whether one would fit Maya.  I eagerly waited to meet with the team, let Maya (then almost 3.5 yrs old) show off her emerging skills, and get matched with a dynamic device that would grow with her.

But they said she wasn’t ready. 

She was ready.

They said “We know, mom, that you want her to be ready, but a dynamic device would be too much for her right now.”

Even though she already had experience using a dynamic device. 

They said “Don’t worry, she can use this instead, and we’ll come back to reevaluate her in a year.”

Don’t worry, little girl, we will come back next year and maybe then we will grant you a device with more words.  Until then you can manage with 32 carefully chosen words at a time, we are sure.  You don’t need more words than that.  You may think that you do, but we know better.

I heard “Of course you think she could do more, because you’re the mom.  Trust us about this, though . . . we’re the experts.  We did, after all, spend 3 hours with her in this small, crowded office.  We know what she needs, and what she’s capable of, more than you do.   We are qualified to make this assessment.  You are not.”

And I hung my head and signed their papers, just to get any AT on her IEP, and when I left the building and lifted my head silent tears slid down my cheeks and I resolved, again, to figure this out on my own.  Because although I was “just the mom,” and while I wasn’t technically qualified to determine and implement AAC, I was clearly going to be the best shot that Maya had.

Again: I’m in a large city.  I’m an outspoken advocate.  My daughter is in an excellent special needs preschool.  I was willing to ask for help and consulted with a private ATP prior to the DOE AT evaluation.  And despite all of this, I still couldn’t locate an AAC specialist who would be able to match us with a product, design an implementation plan, and work with us.  Which makes me wonder how many people across the country (and worldwide, for that matter) have no choice but to try to go it alone . . . not because they feel like they are the best qualified person to make these AAC decisions, but because they’re the only candidate who’s shown up for the job.

And lest you think that I’m advocating for parents to write off professionals and just do it themselves----this is where I clearly state that I think that some parents go about do-it-yourself AAC (and do-it-yourself many other things, for that matter) the wrong way.  Picking a communication app because you saw it on 60 Minutes, or your neighbor’s friend’s kid used this app to communicate, or it-was-one-of-the-cheapest-ones-in-the-iTunes-store-so-why-not-just-try-it-out-because-we’ve-got-nothing-to-lose-anyway . . . these are the wrong ways.  You’re not trying out a new couch, you’re choosing an entire communication system that you hope your child will be interested in and become attached to.  And, if you’re looking for something long-term with growth potential, you’re not just picking a cheap app that will say a few words, you’re attempting to pick a system that has been developed by intelligent people who know about language, designed to make good linguistic sense.  I was all too aware that the device/app that I chose for Maya would affect the way that she learns to process language, the way that she begins to form phrases and sentences, the actual mapping of her brain.

It’s a lot of freaking pressure.

If you’re doing it right, you don’t just pop open the app store and download something.  Because even if you bought the best app around---here’s the key: the app doesn’t magically unlock language (not for most people, anyway).  Researching, buying, and downloading an app is the easy part (although it sure didn’t feel easy at the time).  Per my ATP friend, “Apps have very little to do with the effectiveness of AAC, it’s the configuration and implementation of the AAC approach that is far more important.  The app doesn’t elicit speech/communication from a person, the treatment approach does.” 

You need to not only research the devices or apps, but how to implement them. When the app is downloaded, and you sit down with your child and open it up . . . well, then what?  There’s a lot of homework to be done before sitting down at that table.

And so, I’ve done my homework (and continue to, daily).  I’ve read myself in circles-speech websites, scientific journal articles (with a highlighter, a notepad, and a window open on the computer in which I can google diagnoses, protocols, and best practice techniques to get a clearer understanding of the information in the paper that might initially go over my head). I read the LAMP manual, and a handful of speech, apraxia, and late-talker books. I follow speech and AAC people on Twitter, and I devour the links and information floating through their online communities.  I attend workshops: on apps for kids with special needs, on early literacy for children with special needs, on the Kaufman Protocol for children with apraxia, and I’m heading to the ISAAC conference in Pittsburgh this summer. 

I’m learning as much as I can, but it sometimes still feels like not enough.  Not when the reality of the situation is that the decisions that I make when I sit down with Maya and the talker are teaching her language.  I am showing her how to form sentences.  She uses the app at school, but most of the teaching is occurring at home with me.  The payoff is gigantic, but the pressure is great.  And I don’t want to mess it up.

I am not an expert.  Maya is the first preschooler that I’ve ever worked with, on AAC or otherwise (I used to teach middle school science, which, as I’m sure you can imagine, is very different than preschool linguistics).  I recognize my limitations as “just the mom” . . . and, rather than naively or ignorantly plowing ahead, assuming that I know best, I attempt to do what any intelligent person would do when they are unsure of how to best proceed.  I find someone who knows more than me, and I ask them.

To that end, I’m eternally grateful to the SLPs and ATPs that I’ve connected with online and off, who answer tweets and emails when I get stuck on how to move ahead following best practices, rather than just haphazardly.  A small group has been willing to reach out without judgment---without telling me that I “should really find a specialist to work with”, since I’m “just the mom” (because believe me, I’ve gotten responses along those lines, too).  And answering my questions is no small feat, since with every bit of progress that Maya makes I find myself facing another wait-how-can-I-do-this-best moment.  Here are some recent examples:  When using the device, should I model “I am hungry” or “I’m hungry”? What phrases should be considered as stand-alone buttons? Can you share some ideas for highlighting core vocabulary across many different settings? When do I start prompting her for more words, or building phrases like “I want milk” instead of just “milk”, and when do I back off, not wanting to frustrate her if she’s clearly telling me something with her one word choice?  What about the “I want” debate---I’ve heard some people speak out against the overuse of “I want”s, so when is it appropriate and when should they be avoided?

I know that I’m not an expert, and I make no claim to be one.  I also know that I’m the best option that Maya has right now, and that I will guide her towards more fluent communication with the best of my ability, consulting as many professionals as I can along the way.  And I will say, with certainty, that at this point I know a solid amount about apps, devices, and best practices in implementing AAC.  None of the therapists that we’ve worked with have ever expressed concern or displeasure that I am the leader of our push into AAC.  Even ASHA seems to support the I’m-driving-this-bus-myself position that I’ve found myself in, stating "It is strongly recommended that the AAC team be driven by the client and his/her family to the greatest extent possible. Part of the AAC program should be dedicated to finding and implementing ways in which the client can have maximal input regarding the disposition of the program."**

So, I may be the mom, but I am not “just the mom.”

I resent the assumption made by some professionals that parents who take matters into their own hands are taking the easy way out by just buying any app instead of working with a specialist.  My hand was forced.  This wasn’t my plan.  If there had been experts available I would have gladly passed this job to them, but there weren’t and so here we are.  I also resent the assumption made by some professionals that parents who take matters into their own hands are uninformed by default.  I’ve done everything- every thing- that I can think of to educate myself about AAC.  I looked before I leapt.  And while I can’t speak for them personally, I’m sure that there are many, many other parents who have done the same.

I hope that our story brings to light the personal aspect of what has happened when a family becomes the driving force behind the decision to implement AAC.  My goal here is to show that many, many parents feel obligated to push for AAC, whether they are trying to buy devices privately or to set up a plan with an iPad app, not because they feel like they know it all or they’re trying to take the easy way out . . . but because they have a child that they desperately want to give a voice to, and they don’t know who else to ask for help.  In addition, many of us are devoting huge amounts of time, energy, and money into educating ourselves (and, in turn, educating our family members, friends, and professionals who work with our children) about how to implement AAC and teach our children.  We are not naïve.  We are trying our best.

I’ve met parents who think they know everything (when they clearly don’t) and professionals who think that they know everything (when they clearly don’t).  I’ve also met individuals in each of those groups who are amazingly well versed and knowledgeable.  A little humility, combined with the fact that we’re all working towards the same goal, goes a long way in each direction.  Parents or professionals, we’re all just people who are sincerely doing the best that we can to help children find their voices. 

  

 

*I was able to find one extremely highly regarded AAC specialist in the city, but her waiting list for an evaluation was months long. I couldn’t make Maya wait months when I could see that she was ready.  She didn’t deserve that.  There must be others out there, but I couldn’t find them when I needed them.  I imagine many other parents, worldwide, face the same challenge.

**ASHA quotes come from this article: Roles and Responsibilities of Speech-Language Pathologists With Respect to Augmentative and Alternative Communication: Technical Report and can be found in the "Roles of the Speech-Language Pathologist" section

Every so often it's time to cry again

Maya arrived home the other day with one thing on her mind: the school bus.  She was saying “school bus” with her talker, she pointed to the picture of the bus that hangs in the alphabet hallway (with the letter B), she told me “buh!” several times, and she kept demanding that we sing “wheels on the bus.”  Her method of demanding was very cute--she made sure that she had our attention and then rolled her arms round-and-round, just like in the song.  We sang, she acted it out, the song ended, she was delighted and wanted more.  Good times.

But I didn’t know why she was so suddenly enamored with wheels-on-the-bus, and it nagged at me.  Was she excited to be traveling on the school bus again after her week off?  Were they reading about a bus at school?  Does someone else sing her that song?

It was obvious from the way that she lit up when we started to sing that she was making some connection, and she couldn’t tell me what is was.  So after she went to sleep I emailed her teacher, Laura.  First, I let her know that Maya was newly obsessed with wheels-on-the-bus, and that spinning her arms translates as “let’s sing WOTB!”  Then I asked if they had done anything with that song at school.

I got the reply the next morning (I’m paraphrasing): That’s too funny!  Actually, I sang it to her yesterday at school, and then we all sang it later as a class!

I smiled reading it, understanding how much Maya must have enjoyed acting out the song with her friends, and how excited she was to keep doing it at home with us.   Then I started to cry.

God, how I hate that she can’t talk.

I hate that in order to figure out that they sang wheels-on-the-bus we had to go through a crazy multi-step guessing game: Maya acts out round-and-round, I guess that’s she saying wheels-on-the-bus and start to sing.  She lights up, so I know that I’m right. I sing and she does the motions and she is more delighted than usual, so I take her excitement as a clue that something more is going on.  I email the (luckily cooperative) teacher, who doesn’t mind my guessing games, and wait to hear back to gather more clues.  Finally, I find out that she sang it at school, and now I wait for the rest of the day to go by so that when I see her again I can say, “Maya, I talked to Laura!  She told me that you sing wheels-on-the-bus at school!”  Mystery solved!  High fives all around!  24 hours from start to finish.

Or . . .if she could talk . . . she could say “Wheels on the bus!” and we could sing together and I could say “Did someone sing that today at school?” and she could say “Laura sings wheels on the bus!” and then we could have a snack.  4 minutes, maybe, from start to finish.

I hate that I might be missing other hints that she tries to give me, other things that she wants to share.   I speak for her constantly, making connections and guessing.  When she enthusiastically points out a whale in a book, I say “Oh,  a whale!  That’s like the big whale that we saw at the museum!” . . . but what if she’s pointing at the whale because it’s blue? Or because a boy in her class wore a shirt with a whale on it today?  Or because they’re studying the letter W at school and read a whale book earlier this week?  How can I keep talking for her, when I’m really just taking my best shot at guessing what she’s trying to say?

I hate that it’s so hard for her.  And for us.  And while I love her easy (well, mostly easy) personality and I’m eternally grateful that she doesn’t seem to sense the unfairness of her situation yet, I’m so angry on her behalf.  I resist the urge to get down on my knee and look her in the eyes and say “this isn’t fair to you, you know.  Other kids have it so easy and you have to work so hard and even then sometimes I just don’t understand and it’s not your fault and I can’t do anything to help and I’m sorry.”  I try to be happy that she (mostly) doesn’t care yet because I know that someday she will and that will be another crushing thing.

I hate that for us to communicate there is a multi-modal full body exchange that needs to happen.  I hate that I have to guess.  I hate that I’m probably wrong a fair number of times and I don’t know it.  I hate when she gets angry and cries/whines/yells at us (which happens at least once a day) because we don’t understand and she doesn’t know how to make us understand.   I hate that here I am again, three years into all of this stuff, writing with a crumpled pile of used tissues on the floor next to me. 

Every so often it's time to cry again.

At least now I have three years’ worth of experience behind me . . . enough to know what happens next.  I’ve sang this song before, many times now.  I will cry angry tears and then they will change to sad tears and then I will be numb.  And when the numbness fades I’ll take the energy that’s beneath it and, with new gusto, throw myself into working on communication stuff.  Oral motor exercises and making Maya request things with sounds and working more and more closely with the talker and Speak for Yourself so that it will continue to become increasingly incorporated into the way she initiates communication.  We have a lot of tools and a lot of knowledge and have to keep doing the hard work of making it stick.  There will be productivity and progress until I reach a new breaking point, and then we will start again. 



Postscript: I finished writing this at 2:55pm. At 3:15 Maya came home and we got the mail, and a prototype keyguard for the Speak for Yourself app arrived, which is fantastic and will definitely help with Maya’s communication accuracy via the talker.  At 4:10 I became sure (after a few days of debating) that I’m starting to feel the baby kick.  So, I guess sometimes you get lucky and the time to cry passes more quickly than you would expect. 

Pull up a chair . . .

As many of you know, we had our Assistive Technology re-evaluation with the DOE yesterday. The point of this meeting was to determine, after a 6 week trial with a TechSpeak, whether she should stay with the TechSpeak or possibly move to a high tech device.

I couldn't figure out the best way to post an update about it.  I think people often say "The meeting was a fight", but unless you've ever been in one of these DOE meetings, it's hard to understand what that looks and feels like.  And if you have been through one of them, you know that it often is so long and twisty that afterwards it just feels like a blur and is difficult to re-tell.  So the best way I could think of to tell you about the meeting was to try to take you inside and show you, so you can see for yourself, rather than just summing it up.  Here it is, in all of its disjointedness . . . scenes from inside the meeting.

Maya sits in a little chair with the TechSpeak in front of her on a table.  Sarah, her lovely speech therapist, sits next to her in another tiny wooden preschool chair, holding a big bag of farm toys (barn, tractor, animals, etc).  Britney, the DOE-assigned assistive tech evaluator, sits behind Maya, peering over her shoulder, watching to see what buttons she’ll tap on the TechSpeak, notepad poised on her lap.  I stand in the doorway with Maya’s teacher, surveying the scene, trying to watch through both my eyes and Britney’s eyes . . . and realizing that those two sets of eyes are seeing very different things.

“I want to see her choose between three items,” Britney says, pen in hand.

“Ok,” says Sarah, “Maya, do you want the sheep, the cow or the pig?”  She holds up the three plastic toys.  I hold my breath.

Britney watches the back of Maya’s head turn slowly from side to side as she scans the TechSpeak, conceivably looking for the sheep, cow or pig.  Her head stops moving and she makes a small nonsensical sound.  Her finger reaches for a button—zebra!   He hand starts moving faster, tapping out- zebrazebrazebragiraffe.   Britney takes notes.

I can see the front of Maya’s face, so I could see her look at the cow and the sheep and turn away, looking for something more interesting.  I understand Maya’s sounds, so I knew that the little “hmph!” noise that she made meant something silly was coming.  That’s the noise that she makes when she’s kind of delighted by something.  And I could see her watch Sarah for a reaction when she said zebra . . . and then smile sneakily as she said zebrazebrazebragiraffe.

I see a silly, naughty, clever girl.  Britney sees a girl who didn’t understand the question.

-----------------------------

Britney makes the case for keeping the TechSpeak.  She makes good points, her arguments are strong.  She says that Maya isn’t yet using the device to the fullest of its capabilities, and that’s true.  For example, she’s not making spontaneous observations (like I see-Billy, a two button combination) during morning circle.  This is where Maya’s teacher jumps in and said “But the thing is, no three year old would really say that, you know?  If we ask who is sitting in the circle, Maya will just say Billy, not I see-Billy.” 

Britney talks about different ways the TechSpeak can be programmed, different uses for it in the classroom.  She tries to spin the limitations of the device as simply poor programming choices---insisting that if it was just programmed differently, there would be different, possibly more useful, sentence making possibilities.   She has a lot of pro-TechSpeak arguments.  I zone out.  It all sounds like I’m-in-charge-I’m-making-this-decision-I-know-what-is-best-you’re-keeping-the-TechSpeak-and-here’s-why.

Then she changes tactics and speaks about the challenges of using the Dynavox Maestro (the high tech device that would be the next step if she decides the TechSpeak is too limiting).  She speaks (at length) about the cognitive skills needed to work a high tech device like a Dynavox.   “To use this, a child needs to be able to understand categories.  If they want milk, for example, they have to be able to tap I want, then remember that milk is in the drink folder and tap drink, then scan the page to find milk, then tap the top bar to hear I want to drink milk and then tap the home button to get back to the main screen,”  she was holding up her hand, ticking one manicured finger off for each button tap.  “That’s a 5 button sequence, and the child needs to remember where the different categories are.”

“She could do that,” I say, without hesitation.  “I mean, I think she can . . . I’m pretty sure,” I add, in my head.

Britney sighs and looks to the teacher and the speech therapist.    The teacher nods, yes, Maya is smart.  I barely resist the urge to hug her.

Britney takes out the Maestro that she’s brought with her and starts to fiddle with buttons, turning it on and setting some things up for Maya to see.  In a very prove-it-to-me tone, she tells me that she wants to see Maya form a 3 button sentence--- I want- to drink- milk.

I show it to Maya, who is only slightly, cautiously interested.  Mostly, at this point, she’s trying to get past me and into the hallway.  We’ve been in the room for over an hour.  We all want to escape, I think, but Maya is the only one actually trying to put that plan into action. 

Tears fill my eyes.  I force them back.  I will not cry during this meeting.  I will not.

“She’s not going to do it,” I say.

My frustration during this meeting is that, more than anything, I feel like we are assessing Maya’s obedience, rather than her ability.  No, she will not tap that I want-to drink-milk because, well, she doesn’t want to.  She doesn’t want to drink milk and she doesn’t want to tap a sentence and she doesn’t want to be in this room anymore.  She is 3 and she is stubborn and she is done and she doesn’t want to.

Britney is insistent that she only gives the Maestro to children who demonstrate that they are capable.  Children who are able to sit in the evaluation, watch someone model a sequence a few times and then demonstrate that they can do it.  That shows that they understand and are capable of managing the device. 

I get the feeling that she doesn’t give these to many 3 year olds.   But I don’t really care.

I want it.  I want to see Maya with it and I want to decide for myself if it’s a fit, with the help of her teacher and therapists, who believe in her and will put in the time and effort to give this a fair chance.  I want it in Maya’s hands, and I want to see if she has the motivation and ability to learn how to use it.  I want to see if this can be her voice.

No offense, Britney, but over my dead body are you going to be the one to make that decision, unchallenged, after a few hours in a hot, overcrowded office with my kid.    That’s not how this is going to go down.

---------------------

The meeting is long.  Time is spent observing Maya and debating-more debate than observation.  Britney talks the most and I talk the second most and the teacher and therapist and mostly quiet, which is good because their words seem more powerful, since they are so few.  They request a six week trial with a Maestro.  If it’s not a fit, we can give it back at the end of the trial period and switch back to the TechSpeak-no harm, no foul, at least we’ll know for sure. 

Britney does not love this idea, and says that we’re trying to move too fast---the Word Book is relatively new, the TechSpeak is relatively new, we should just stay focused and stay where we are.  I argue with her about vocabulary size and limitations and not meeting needs.  She understands my points, but disagrees.  I understand her points, but disagree.  Maya’s teacher mentions, again, a trial period with a Maestro.  We go round and round and then Britney says . . .

“Well, if I did agree to a trial with the Dynavox . . . “ and I don’t hear the end of the sentence because I know that she will give it to us and the relief is immediate and overwhelming.  I nod along with whatever conditions she is laying out.  Tears are in my eyes again and I remind myself that I will not cry here. 

----------------

The details are arranged, date for delivery of the device, date for re-evaluation.  We do paperwork and print things and wait for faxes to go through and clean up toys.  Now that we aren’t arguing anymore, we are pleasant.  Britney offers, “You know, we all want the same thing.  We all want something that will work for her,” and I know that she means it and she’s a nice person.   But I still resent the fact that she has the power to make these decisions, and that I’ve spent two mornings this fall trying to prove to her that my kid is smart and deserves a chance with a device.  

-----------------

I am crying before I get to my car.  The silent type of tears that fill up my eyes and overflow and spill down my cheeks without any effort or noise, they just come and I can’t hold them back any more.  The beauty of the sidewalks of NYC is that so many people are moving so fast that no one notices a crying lady walking down the block—and if they do, they keep to themselves anyway.  Tears of relief that the meeting is done mingle with tears of anger that I had to fight so hard and tears of anxiety at now having to teach Maya this device only to re-live this meeting at the end of January. 

    

We Are More Thankful Than You Are

(By "we" I mean parents of kids with special needs.  By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition.  And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful.  I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl.  Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down.  In taking something for granted, one accepts something as a given or true, often without showing appreciation.  While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.

• Will she get good grades?  Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history.  And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway). 
• Will he play sports?   Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane. 
• Will he be teased?  You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
• Will she get married?  Of course she'll have relationships and date and all that jazz.
• Will he go to a good college?  Will he stay on the path to college?  Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
• Will she make good friends or fall in with the wrong crowd?  Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids).  Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode. 

But then . . . over time . . . progress happens. 

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing.  Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap!  That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it."  A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself.  I didn't have to sit and feed her.  It was amazing. 

Walking down the hallway?  Eating a waffle?  These would, without a doubt, be things that my former self would have taken for granted from my typical child.   But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us.  When I first realized that Maya was learning to recognize letters, my entire world shifted.  If I were a typical parent, I might have thought:  Awesome---what a smart girl!  She's already learning letters.  Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought:  She will be able to read someday.  And then, not far behind:  If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her. 

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer. 

That difference brings with it a more profound level of thankfulness.  It just does.

2 years ago today, Maya had her brain MRI.  2 years ago tonight, we found out that her brain was normal.  2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool.  The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone.  It was a video, taken by the teacher.  Earlier in the day, her son had taken his first unassisted steps.  Ever.  Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps.  And while we were there, he did it again, with both of his parents excitedly looking on.  He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment.  That moment that takes them from "I hope that someday he'll walk" to "He walked."  From hoping that someday he would be walker-free to seeing that there's a good chance.  From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical.  For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small.  And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.
 

I will not be her limiting factor

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

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

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

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

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

But it's killing me.

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

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

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

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

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



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


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

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

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

I want it because Maya deserves it.

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

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

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


   

I will not be her limiting factor.




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


 


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

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

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

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