Wednesday, October 8, 2014

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."

  

8 comments:

Karleigh said...

We decided to go ahead and provide our two year old with an iPad mini and a speech app without even stopping to ask anyone else if we "should". The idea that we could hold back any avenue of communication from our little girl was never even considered. She wants to speak, she has so much to say, she just can't do that in the "usual" way right now. So, let's look at "unusual" ways and see if they help.
Afterwards, when we showed her SLP the program we were using she was very impressed with our Baby Girl's ability to handle the app at her age and admitted she probably wouldn't have suggested it to us "just yet" as she didn't think kids her age would be able to benefit. Hopefully we have shown her that it is possible and that'll help other kids as well. You can never underestimate the power of a good speechie who is willing to discover new avenues for our kids!! The idea of a professional deliberately holding something like this back from my child though....I am so glad we've never had to deal with that!!

Anonymous said...

Not everyone can afford to do that. It may literally be iPad no food or food, no iPad. Every child deserves this chance, whether their parents are well off or not!

Kate said...

705Maybe ten years ago I broke my leg (again) and requested a knee scooter. No one ever told me no but it took so long for it to process that they called to deliver it 16 weeks after my surgery! Luckily I didn't need it anymore. Sadly that's no the case with people waiting for AAC.

Sandy said...

Absolutely. The provision of technology to enable communication should be at the very top of the list of our medical and human rights. It isn't even on the list. The cost is most often what is listed at the top but the other factors are really the underlying cause. Some people have a vested interest in limiting what others can say. ACC available on iPads deserve a Nobel Prize.

BLOOM - Parenting Kids With Disabilities said...

If the child happens to be a teenager or older, do they have any input into this? My son is 20 and he doesn't want to use voice devices. We started at age 4 borrowing a dynamite from a distributor because we couldn't get it covered. We videotaped him using it, which allowed us to get a prescription and lease it. However, it was heavy and he is tiny and weak and it wasn't very portable for him. It also wasn't very intuitive and in many ways searching through the pages to find what you want was a disincentive because it took so much time. It would be like asking a typical child, every time they want to say something, to first open a dictionary and find the word in the dictionary. Then go to find the next word. etc etc. My son has Proloquo on his iPad but he doesn't want to use it. He would rather sign or gesture. This technology is not like mainstream business technology in terms of being user friendly. It's quite archaic. So now we're at a point where at our recent life plan meeting, all of my son's workers said that he knows how to use the technology, but he doesn't want to. In the early days, he would repeatedly delete the prologuo when he had it on an iPod. So I guess my question is -- does the kid, at an older age, have any say in whether they adopt this technology -- or do parents and professionals simply 'FORCE' them to use it.

Anonymous said...

Congrats on helping your child! You are inspiring other families :) I am a SLP trained in AAC. One of my families saw your blog and is reinspired to try new things with their child. I encourage families to find an AAC qualified/trained speech therapist who can find the right fit for thier child. There are over 400 apps that come up as AAC and they are not all created equal :) For those who can't purchase an iPad as a speech device, it can go through insurance. I hope you continue to post your experiences :)

Ettina Kitten said...

Late reply, I know.
Firstly, if he doesn't want to use an SGD, obviously he shouldn't be forced to use it.
However, it's possible that he just hasn't gotten the right SGD. I don't have any experience with the systems you mentioned, but if the device makes you scroll or press more than two buttons in a row to say something, a lot of users will get frustrated and give up. If you can find an SGD that can say everything with two taps and no scrolling (like Maya's app, Speak for Yourself), he might like it better.

Ettina Kitten said...

Late reply, I know.
Firstly, if he doesn't want to use an SGD, obviously he shouldn't be forced to use it.
However, it's possible that he just hasn't gotten the right SGD. I don't have any experience with the systems you mentioned, but if the device makes you scroll or press more than two buttons in a row to say something, a lot of users will get frustrated and give up. If you can find an SGD that can say everything with two taps and no scrolling (like Maya's app, Speak for Yourself), he might like it better.