Thursday, June 7, 2012

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

10 comments:

Unknown said...

Children can adapt to more then one device. Keep up your perseverance. You are doing a great job. As you know, no one has all the answers.

Giving your child a voice is worth all the frustration.

Cindy said...

You are not just a Mom.

Stacey said...

I am one of them! I am "not just a mom" too! I totally relate to everything you've said in this post. My head is nodding as I read and I'm speaking aloud, "I hear ya sistah!" My fingers are twitching just wanting to type and type all the things that are running through my head right now. But...I have to go pick up my son (AAC user) at school.
Maybe we can connect off line?
Here's my e-mail: jacart2@yahoo.ca
(I'm also at mthanw.blogspot.ca
I'm the one that tweeted you about the dog commands)
Would be great to connect at the ISAAC conference too - although we're just there for the camp the weekend before. Will Maya be taking part in camp (put on by the AAC Institute-great people with great resources BTW)?
Okay...I'll leave it at that for now.

Anonymous said...

Amen Dana!

I really appreciate your tracking down and including the ASHA roles information. I couldn't figure out why an SLP - unable to make reasonable progress in expressive communication with my son - wouldn't leap at the chance to try an AT / speech output device. But the school has only a 1 hour DISTRICT wide consult with the AT specialsts for all the kids in the school. When will there be a degree program in AT to get more trained professionals into the field? Great post!

Jill said...

I disagree. I think you ARE an expert.

Lucy said...

Yes!! There are so many areas in dealing with medical professionals where I feel like this is the case. We're parents, and we're not doctors, but we are *not* just going off half-cocked. We have college educations, too. We're intelligent people, too. We research, too. A lot. (I've found that often I've got more research under my belt about a particular aspect of care than the professional I'm working with.) We make informed decisions, to the very best of our abilities, and I'd argue that we're much more motivated than professionals to make the best decision for *this* child. After all, we are the ones who will care for *this* child for the rest of our or their lives and who, more than anyone besides the child, suffer the consequences of our mistakes. We're their parents. We love them. The therapists and doctors don't have that.

Liz said...

Have you ever heard of a book called "Disability is Natural?" I think that you might like it. Parents are definitely the experts! A good therapist can certainly help guide us, but at the end of the day we are the ones who think about our child at every waking moment, we are the ones with the high stakes. We don't have the clinical experience but we certainly amass a great deal of knowledge! And most importantly, we know our children best.

Anonymous said...

Its unfortunate that we have to push and push and ultimately bear the weight of making the decision on our own re what will work for our children.

My child was in one of the best pre-ks in the city and they insisted on giving her a hand switch for communication despite the fact that she has limited motor ability in her hands. Not surprisingly she never met any of the communication goals set before her.

I pursued an eval thru a private org and we switched to a head switch with the ultimate goal of moving towards eye gaze. We have made more progress there in 6 months than we made in 3 years. So frustrating.

I feel your pain, Mama! keep pushing!!!!

waitingroomtherapy said...

Hi Tiger Therapy Mom!

Wow. First: congrats to you on so many levels:
(1) For your perseverance
(2) For your thoughtful research
(3) For your pro-activity, as opposed to re-activity in understanding your daughter and her specific needs
(4) For being Mom, Therapy Mom, Tiger Therapy Mom, and Tiger Therapy Mom That Knows Too Much.

Here's a HIGH FIVE, an "AMEN, SISTAH" and "YOU GO, GIRL!"

Know that you are a unique blend and your daughter is one helluva lucky little girl to have you. You are charting new territory. God bless you for pioneer spirit.

I read your post and had flashbacks to some of the EXACT thoughts, feelings and actions when my guy was Maya's age. Non-verbal until 4 1/2, we had the same overall, general global developmental delay diagnosis interspersed with "a little bit of this" and "a little bit of that" by the specialists we visited. So comforting (not!). I completely share your frustrations when it comes to feeling like you are treading water regarding information and help for Maya. Personally, we ended up sort of cherry-picking our way through therapy and diagnoses for several years to find a glove that sort of fits (which is actually more like a mitten in our case). There is just not a "Jack" (#1 special son) category to check off when it comes to his needs, challenges and abilities. Dang.

Although I'm not in NYC (I'm in Chicago), I would love to connect with you to help if I can. While I don't know it all by any means, I am an information hound. I'm a digger and a scrapper. I have connected with a couple of communities, resources and people on my own crazy navigation of the special needs underground maze that might be helpful in your own pursuit. I am very happy to pass along anything that can help you and that rockin' little gal you have.

Would love to connect when it works for you....

Take care,
Holly
waitingroomtherapy@comcast.net

Anonymous said...

So glad to have found you! I am "just a mom"too. I am trying to implement AAC. ( have Go Talk NOw on the Ipad, my son is 6 and experiences Down Syndrome) Not one, not one of his school district SLP or anyone else for that matter have even mentioned AAC!!! So I am going it mostly alone and with good people like you, and recently discovered web sites. BUT can you point me in a direction for setting up the first page with core vocab<. The most I can do on GO Talk Now is 25 little blocks/ bubbles . I really want to do this right. Thank you. Liz Tree