But I’ll get back to her shortly…
When Nik had his AAC evaluation in January, we —the team, which consisted of an AAC specialist who’s been doing this for roughly fifteen or more years, an occupational therapist, Nik’s speech therapist, and me —agreed upon certain points of information and technology; the first, and foremost, being that Nik is still very much in the “pre-emerging” communication stage. He does not yet have a consistent method of communicating his wants and needs; he relies on random use of grunts, claps, joint referencing, and dragging a person toward whatever it is he wants. In some cases, Nik will resort to extreme behavior such as crying, thrashing, hitting his head on the floor —but only in what he might consider dire circumstances. Nik, being the independent spirit that he is, is pretty self-sufficient; if no one is around to get what he wants he either finds an alternate means of getting it himself or he simply changes his mind and moves on to something else.
In some ways Nik’s self-sufficiency is a good thing; in other ways, it works to his detriment. Where everyone —Niksdad and I included —sees it as a wonderful thing that our son is so easy going and happily entertains himself, it has actually kept us from recognizing that Nik doesn’t understand how to communicate. He knows that he wants to communicate and he tries; but his scatter shot method is not terribly effective. As long as someone is constantly with him we can interpret his body language or eye gazes. But when he is left to his own devices, Nik cannot effectively communicate. That is, it goes without saying, something that is vital to get along in the world outside our tiny little home.
Out of the AAC evaluation, we determined that Nik needs to be taught intentional communication; he needs to understand that there is a dance, a give and take which he can initiate and elicit responses which can give him a tremendous amount of power and autonomy. The question Niksdad and I —and even Miss M, his wonderful speech therapist —didn’t know how to answer was How? How do we teach Nik to communicate besides simply modeling it for him? How do we take our highly intelligent and resourceful child and open up a whole new world to him in a way that makes sense and works for him?
While he was in school, Nik’s therapists and teachers diligently tried to use some variant of a picture exchange communication system (PECS) to help him express himself. The problem, or so everyone assumed, was Nik’s visual impairment; no one really knew what he could see with his right eye —we still don’t. When PECS was clearly not successful, they moved on to what I call enhanced PECS; the staff simply added some sort of tactile bits to the picture cards.
I remember the teacher giving me a moderately large wooden letter P which someone had painted with dots of green textured paint. The green was because that seemed to be the color Nik either preferred or could see best (we still don’t’ really know as Nik can now pretty much sort and identify colors of blocks at will), while the textured, bumpy paint was, ostensibly, to assist Nik in realizing that the wooden object in his hand meant something. He was supposed to carry this letter P with him when he was outside the classroom. There was a mate to this letter P on the wall outside the classroom door. In theory, Nik was supposed to be able to match the two letters and know that this was where he was supposed to go. Quite a tall order for a child who still does not know his letters and who, at the time, was unable to match shapes or colors.
Needless to say, the experiment was not a success and they simply gave up. I mean, really, it was somewhat akin to handing a two year old your car keys in the kitchen and expecting them to find their way out to the car, open it up and insert the key in the ignition. The child may know that they are holding keys, and they may have some vague understanding of what a car does (takes them “zoom-zoom” with Mommy or Daddy), but the concept of the relationship between the two is a long way off. The objects are simply that —objects. They are concrete; the child does not yet understand what they represent.
Once I understood that, I finally understood why PECS and the large, green, bumpy letter P didn’t work. Nik was not yet —is not quite yet— at a point where he understands symbols. To him, that large lumpy letter P wasn’t even the letter P. It was just a bumpy shiny thing that felt kind of neat in his mouth. The PECS cards? Perfectly sized, shiny things to tear off a chart and throw as he listened to the rrrriiippp of the Velcro.
This brings us back to the AAC evaluation and the question of how to bridge Nik’s specific communication gap.
I know I’ve said it before that the evaluator was incredible. Truly, this man had near-mystic insights into my child that I thought only Niksdad or I might have. He recognized Nik’s strong connection to music and sound and his need to control things through cause and effect type mechanisms —and then figured out how to put them to work in Nik’s favor. The perfect solution —I thought this at the time when it was still an abstract to me and I think it even more now that it has become a concrete reality —is a programmable switch which can be used to record multiple messages which Nik can then activate by a simple touch.
The actual device is called a Little Step by Step 75. I can set up multiple sequences of things such as getting dressed, getting ready to go out in the car, getting ready for bed, and many others. I simply introduce the button to Nik and have him press it once for the first step in the sequence. “Time to get ready for bed! Let’s get my pajamas.” Then we do that step. He touches the button again “Let’s take off my shoes and socks.” We do it. And so on. Or, I can program every other line of a song we might sing together so he can sing a line and then I sing a line. The idea is to teach him the give and take, the cause and effect of intent. He communicates “X” and then we actually do “X” and so on.
At first it was very haphazard; it took us a while to figure out some set routines and to teach Nik to wait; this isn’t a toy for him to play with. It’s not perfect by any stretch yet, but we are seeing some remarkable progress. Where Nik once wanted to press the button repeatedly and didn’t really pay attention to the words, he now waits and even looks from the button to us as if he knows he’s supposed to push the button before we do the next step in a sequence.
The second part of what we learned from the AAC evaluation is how to help Nik learn to make conscious choices. At the time, his only method of making choices was to simply grab at whichever of two objects we presented. Often, he would grab at the one closest to him and it wasn’t always the one he really wanted. So another device, similar to the Step by Step, was introduced.
The iTalk2 is a nifty two-button device which allows us to record a single message for each button. We can use it for teaching things like “Nik’s turn; Mommy’s turn” or for giving him choices between two toys or objects (shapes, colors, etc.). We record the message for each button and then reinforce it with a photograph of the toy, or the object being offered. Once the choices are made, we can switch the pictures and messages to reinforce the need for Nik to both look and listen as he presses the desired button.
For example, we offer Nik a choice between his “kitty cat piano” and “number train;” whichever button he presses we give him the corresponding object. If he rejects it, we swap the buttons and try again. It’s not yet consistent but Nik is definitely beginning to catch on to the whole choice concept.
Now, let me interject here that these are by no means long term solutions. They are a first step to help Nik make some cognitive connections about how to communicate. Once he’s doing fairly well with these devices we will go back for a follow-up session with the AAC evaluator and look at additional ways to use these devices and/or what is next.
The wonderful thing about the button devices is that they are simple —both in operation and visual presentation. This is critical right now where Nik cannot tolerate a lot of “visual clutter” and does not yet have strong visual scanning skills; when he gets too much visual input, Nik tunes all of it out. I sometimes think this is why Nik doesn’t have a lot of interest in books; they require too much effort for him to be able to discriminate what he sees on the pages. The simpler and cleaner the page, the better he tolerates it —even better if the pictures are actual photographs instead of illustrations.
Another great thing about these particular devices is that they aren’t terribly expensive; if you’ve had any experience with AAC then you can appreciate how expensive even the “entry level” technology can be for certain types of speech generating devices. These two devices cost in the low hundreds versus the thousands. And, because they are deemed medically necessary, state Medicaid regulations mandate that this expense be borne by Nik’s insurance. That’s a blessing for us right now as we are squeaking by while Niksdad is in nursing school and I am not able to work.
Thus, we come full circle to the case manager.
Because I knew there would be a significant processing time for all the paperwork to be completed by the pediatrician and then the authorizations and vendor quotes, etcetera, I arranged to borrow both devices from our state assistive technology group (DATI). Once I finally gathered together all the requisite forms and information, I contacted the vendor to arrange the quote and finalize purchase arrangements.
SCREEEECH…(the sound of the brakes being slammed on!) It seems this vendor, the only one in our region who handles these specific devices, will not do business with our managed care organization (MCO) because they have been burned in previous transactions. Swell.
So, I placed a call to our marginally helpful, marginally less supportive case manager, to find out how to proceed. Her response underwhelmed me.
In spite of the fact that she and I had already discussed these devices, and the fact that no other manufacturer has anything like them, she told me to call another manufacturer to see if they had something like it! It seems Nik’s MCO doesn’t actually have any AAC providers they work with; I’m guessing for the same reason we’ve encountered. They do have a moderate relationship with DynaVox —perhaps because it’s a large enough company to have a national sales team and can cut out the distributors? None of which matters since DynaVox doesn’t have a comparable device!
I contacted the evaluator for some assistance; he’s been doing this so long that he is the go to guy for all things AugComm in our area and knows all the manufacturers and their product lines. He told me that none of the providers he knows want to work with Nik’s MCO. So, here we are caught between a rock and a hard place. I’ve got devices that we are using and seeing actual progress with but I have to return them on April 14th. I’ve got a vendor that has the devices we need and an MCO that has, essentially, tossed the whole mess back into my lap to solve.
Oh, and the case manager took it upon herself to call DynaVox* and thinks she has found a device which would “work well for Nik” and she’s getting a quote and working on authorizations. Wow. And to think I wasted all that time going to the most highly respected specialist in the state for an evaluation and recommendation? Who knew I could simply call the MCO case manager —because she obviously knows so much about AAC and thinks that this is at all similar to this and this. And the whole inability to understand symbols and visual scanning for choices, etc? Obviously not a problem in her mind.
I wonder if she does open heart surgery, too. Or prescribes eyeglasses and seizure meds.
* I also called DynaVox and spoke with a very helpful sales person. When I described where we are in the process of teaching Nik how to communicate, she agreed that the device they have for “emerging communicators” was probably a bit advanced for Nik right now. She did offer to have the regional sales rep come to our home and show us the device so we could be absolutely certain; we may do that just so we have crossed the T’s and dotted the I’s.
Sigh. Another waste of our already limited time…
Stay tuned as the saga continues.
ETA: Thank you for some of the comments specifically about some steps to take. In my haste to post this, I neglected to note that I have spoken with the Executive Director of DATI (which is also the key assistive technology advocacy organization in our state). She has already begun a dialogue with the top people at Medicaid — the ones responsible for selecting the MCO’s and determining policy, etc. They are working to resolve our specific problem as of Friday. In the longer term, they are looking into whether this is a more systemic issue and how to resolve it for all their stakeholders. I suspect it is systemic and needs to be addressed.
We have also been advised that we should not purchase the devices ourselves because that starts us on a slippery slope which may bite us in the rear later. I anticipate that we will go through several iterations of AAC devices for Nik before we are through, so getting this resolved quickly is a top priority.
I’ll keep you all posted on the progress.