The Gatekeepers

Children with complex communication needs (CCN) need various devices, tools, and supports in order to communicate effectively and to access the curriculum in their schools. This is a simple, solid, well-researched principle and it is the legal right of a child with CCN to have a device and the support services necessary to implement the device (staff training, family training, etc.).

Between the children and the devices stand The Gatekeepers . . . the professionals (generally SLPs) employed by the DOE who have the responsibility of evaluating children (of various ages), assessing their strengths and weaknesses (despite having just met them) and formally recommending an exact communication device/app that will serve them for at least the next year (after only working with them for an hour or two).  It’s a big job. A huge job. The correct recommendation can allow a child to suddenly answer questions in class, make small talk with her teacher, ask questions, and make connections. A faulty recommendation could be too complicated, left to become an expensive paperweight as it is abandoned by the staff or the user . . . or it could be too simple, quickly rejected by a child who tires of saying “Today is Tuesday.” “Today is cloudy.” “I want juice.”

These gatekeepers . . . I don’t trust them. And you out there---parents, classroom teachers, therapists---you shouldn’t (blindly) trust them either.

This mistrust---it is not paranoia. It is based on countless emails (from around the world), an unfortunate number of personal conversations, and two startling encounters that I have personally had with the gatekeeper who would be in charge of Maya’s AAC (I said “would be” because this person would actually have the power to determine what Maya is allowed to use, if I hadn’t decided to reject her recommendation and go rogue). Seriously, the most recent exchange---in which she deemed Maya’s AAC device inappropriate and attempted to replace it with something else---will blow your mind. But I’ll get to that in a minute.

I want to be clear on this: I do not believe that the gatekeepers are intentionally trying to foil children with CCN, to withhold resources from them, to impede their ability to communicate and to make progress. I believe that they want to help, and I believe that they think they are helping. But the people who rise to the position of gatekeeper have typically been working “in the system” for a while, and they are frequently set in their ways. They often have a handful of go-to items that they recommend (you get a TechSpeak, and you get a TechSpeak, and you get . . .um . . . a TechSpeak). They can be overconfident---sometimes brazenly so---and are often unreceptive to concerns/push back from parents (and sometimes even from school staff) who they view as either uninformed or misinformed about AAC. Since the iPad boom, many gatekeepers are now borderline paranoid that families “just want an iPad” (that was basically the opening line of our assessment last year---“we’re not going to just give you an iPad”---despite the fact that I hadn’t requested, or even mentioned an iPad.)

A professional who is overconfident, who tenaciously adheres to her recommendations without accepting  input from others, who assumes that others are misinformed, who becomes defensive when families express a difference of opinion, and who enters a new situation with the predisposed assumption that she’s going to offer one of three standby items . . . well, that’s not a great professional. Now if that same professional is in charge of speaking for children who have no voices of their own . . . well, that’s downright dangerous.

My daughter, Maya, is a 5 year old with complex communication needs. She had a (terrible) assistive technology evaluation from the DOE last year, in which I fought for a dynamic device that she would be able to grow into, and the SLP in charge insisted that a static 32-button device was all that she needed, and all that she would be capable of using for the upcoming year. (The above paragraph is a fairly accurate description of L, our evaluator from the DOE.) I have since learned that preschoolers are notoriously underserved with regards to AAC. Assumptions about starting slowly, not overwhelming the learner, proving competency on low tech/no tech systems before progressing to dynamic displays are so ingrained that many old-school evaluators don’t even think of these things as biases, they think of them as facts. (sigh)  After this disheartening evaluation I realized that the only people who would presume competency and have audaciously high expectations of Maya were my husband and I.  I logged a ridiculous number of hours researching AAC and got Maya set up on a communication app that has proved to be wildly successful for her.  The video below, presented at an AT conference on April 27^th, shows how she became an independent communicator (and it’s pretty inspirational, too). After our presentation we were approached by several DOE employees who commended us as a shining example of how AAC can be successful with early learners.

If you don't want to watch the whole thing, you should just fast forward to something in the last 2-3 minutes and watch for 30 seconds. It will give you a frame of reference for the madness below.

So imagine my surprise when,10 days later, I received a call from L, informing me that she had just finished Maya’s AT re-evaluation. (I had requested the evaluation months earlier as a formality, a part of the Turning 5 process, but was not notified ahead of time that the evaluation would occur that day—otherwise, I would have been there.)  When I requested the evaluation, I had assumed that the evaluator would make note of the fact that she was using a dynamic display device with a communication app functionally and independently and that should be protected on her IEP. I had assumed incorrectly.

L stated that based on her observations and reports from the staff, Maya was “unable to navigate her system independently”. She said that “the display was overwhelming” and that Maya “didn't have the motor skills to access the buttons or the keyboard”. She said "when I saw it, even I was overwhelmed by it." She told me that when Maya wanted to request a drink it took her “several minutes” to find the correct button.  (At which point I could not prevent myself from interrupting “Hold on. That is simply not true. There is no possible way that it took her several minutes to find the button for drinks. You are a lying liar who is falsifying evidence to make your case stronger, but I am smarter than you realize.” Ok, I may not have said that last sentence aloud, but I thought it.)

You may be wondering how anyone, even an overconfident biased gatekeeper, could spend time with the girl in the above video and come away thinking that her app is anything less than the perfect system for her . . . but, to be fair and honest, it’s not as simple as that. It is important to note here that Maya often chooses not to use her talker at school. I am reasonably sure that this is because the classroom staff models on many different devices (as opposed to home, where our modeling all occurs through her talker). As professionals know, aided language input is basically the most powerful tool that communication partners have----and since Maya is able to code switch with ease, she will gladly hop on to a TechSpeak, a communication board, a PECS book, or whatever the teacher is modeling with in front of the small group. She is also using word approximations with her speaking voice more and more.

However, Maya’s choice to use multi-modal communication is not in any way indicative that her current AAC device is ill-fitting or inappropriate, or that she is not able to access it independently. To the contrary, L was informed that I had “extensive video footage” of Maya using the device independently at home, but that they did not often see the same level of usage at school. (Interestingly, L acknowledged that she was told that such video existed but expressed no interest in actually seeing any of it. A weird decision,I think--- to intentionally choose not to view evidence of a child independently using her system before declaring “This child cannot independently use her system!”)

This conversation was heated, as you may imagine. When I was able to get a word in edgewise I pushed back, specifically asking "did the staff say that she is unable to use her device or that she often chooses not to in favor of using the other systems that are being used in the classroom" she relented that yes, they said she was able but refused. However, as our conversation progressed, she often returned to a language of disability. 

The gatekeepers might think that this is semantics, but it’s not. A child like Maya, stubborn and willfull but flexible and clever, may jump around to different systems. Or she may entirely reject her system from time to time—and she’s allowed to do that. Sometimes I don’t feel like talking either. And there are certain people who I’d prefer not to talk to at all, ever. But there is choice and there is ability . . . and if she has proved, repeatedly, that she is able to use a complicated, full AAC system that can grow well with her and carry her into adulthood . . . then to take that away is worse than a bad idea. It is a tragedy. It should be criminal. How dare L call me and tell me that she wants to take Maya’s system away and replace it with---

Oh yeah. I didn’t tell you what she wanted to replace it with.

L’s  recommendation was to switch to a New App. She wanted Maya on a 15 word display (despite the fact that she currently uses a 120-word display to independently produce novel spontaneous utterances). She thinks that because New App uses word prediction (shifting screens that prompt next word choices) Maya will have greater ease at participating during certain parts of the school day, like morning meeting. I was concerned that New App doesn't operate according to LAMP principles, and that Maya already has learned a large vocabulary using an app that works via motor planning. L said that since Maya was able to quickly make sentences on New App during the trial, this wasn't a concern. (Maya could make sentences on anything quickly, she’s a sponge like that.)  I was concerned that New App will allow for fast sentence production, but robotically (“Today is Tuesday, Today is sunny. I want the blue marker.”) but will take away her spontaneous, true communication (“Rainy. Tornado! Scary.” ---which might not be grammatically correct, but it’s creative and spontaneous and way more valuable to me than “I want the blue marker”). L told me that her only concern was ensuring that Maya was able to access the curriculum, and that pragmatics and social language were not her priority.

So basically, we should take away Maya’s only way to communicate her thoughts and replace it with a system that would that would decimate both her vocabulary and her ability to speak in a novel, creative manner. Also, the meager vocabulary that would remain would be reorganized in a system of folders . . . so a word that she could currently say with 2 taps could take 3 or 5 or 6 taps, and she would need to remember first tap this folder, then tap this other one, then scroll down and tap another folder and then there it is!  We should take away her language and give her something “simpler” because you don’t think she is smart enough to handle her system. Because you underestimate her, and your goals are consequently minimal.  Because she is stubborn and won’t comply with requests to use her talker, you want to take it away and give her a system so beneath her long-term (and really, short-term) capabilities that it is disgusting.

It’s akin to telling Picasso “Show me how you paint. Come on, show me!” and then when he fails to perform for you demonstrate his ability, you ignore his body of work, declare his paints too complicated, and leave him with a pat on the hand and a box of crayons instead.

(Yeah, that’s right, I just compared my kid to Picasso.)

If there are gatekeepers reading this, know that you are potentially dangerous. Make note of Maya. Make note of her, see how wrong one of your professional brethren was, and carry her with you as you move through your day’s multiple evaluations. L did not presume competence. L did not believe that Maya’s code-switching, multi-modal communication abilities, combined with her stubborn sass, could make her a child who is oh-so-able but also not-so-compliant. She assumed that my child wasn’t capable and she assumed that I was a mom who was overestimating her kid, who had bought an app without doing my research.

And she almost took Maya’s voice away.

Now I know that I’m just a lowly parent, likely misinformed or uninformed about this newfangled assistive technology wizardry. But before you cast this essay aside as the ramblings of a biased, over-estimating mother, allow me to introduce a piece of evidence that supports my case. As it turns out, L’s DOE evaluation was so late in coming that I had a private assistive tech evaluation done at a hospital in the city (rushing to have something on paper for our IEP meeting) two months earlier. This team met with Maya 3 separate times, realizing that she is slow to warm up and unlikely to perform on demand. When I told them, at the end of a frustrating first session, that I had video of Maya using the talker independently at home, they were eager to see it, to understand the full picture of Maya as a communicator. This team wrote a formal report that basically was an exact negation of L’s recommendations.  Here is one paragraph from that report:

During the initial evaluation and when getting to know Maya, it took Maya some time to feel comfortable using the device on command from therapist. Rather, Maya appeared to engage in conversation using the device when her mother and therapists were speaking. Once feeling comfortable with the therapists, Maya demonstrated ability to find icons in various folders demonstrating the potential for functional ability to communicate using this device. With practice at home and in the assistive technology occupational therapy clinic, Maya has demonstrated with ability to sequence selections. Additionally, Maya has demonstrated ability to search for icons by typing the beginning of the word on the on-screen keyboard.  It is evident that after searching for one item, she is able to locate the icon later on in the session suggesting sufficient carry-over when using the device.

I am an informed parent, and I speak SLP with surprising fluency. I understand and can debate best practices with regards to device selection and implementation. I am open-minded enough to carefully consider suggestions (I even called other AAC specialists to discuss the merit of possibly switching apps, just to make sure that I wasn’t overlooking something in my commitment to our current system) . . . but I am also confident enough to stand my ground.

I am not the typical parent who walks into an AAC evaluation. And that’s what scares me the most about these gatekeepers. Their recommendations are often unquestioned . . . or questioned gently. A timid “You don’t think he could handle more than a TechSpeak?” gets railroaded with “We can always re-evaluate him next year and maybe by then he’ll be ready for more. Right now we don’t want to overwhelm him with too many words---you know, he’s never seen anything like this before. He can practice at school during snack time for a few weeks, then they can make some activity-specific boards, and then he could even start using it at home! That’s a lot of things to work on!” 

(That’s not a year’s worth of stuff to work on.)

Fight hard, parents. This is your child’s ability to communicate that you’re fighting for. Children who learn to take conversational turns are able to become more assertive and independent as they are empowered to speak up, instead of sitting passively and waiting for someone else to (possibly) speak for them. Children who learn to combine words and phrases and form expressive sentences are actually mapping the language parts of their brains.  This is not just about answering simple questions or requesting a snack, this is about language development, cognitive development, independence and empowerment.

This should not be blindly left to a gatekeeper. A child’s communication system should be determined through careful collaboration of the parents, professionals who regularly work with the child, and the gatekeeper . . . not to mention the user, if he or she is old enough to reliably indicate a preference for a particular system.

Educate yourself. If your child has enthusiastic teachers or therapists, educate them about AAC as well. (Not to be biased, but this post isa decent compilation of resources to get started with.) Go into these evaluations with some loose ideas of what you think might work. Listen with an open mind, and if the gatekeeper has a different opinion ask questions like “In which ways do you think (their suggestion) would be more appropriate than (your preference)?” Do not be afraid to push back. Do not get railroaded, do not let them rush things. This is not just the gatekeeper’s first appointment of the day, this is your child’s voice.

Do not be afraid to have audaciously high expectations of your child.  Do not let a gatekeeper make you question your child’s ability or competence.

Finally, to the gatekeepers. I am sorry if you read this and became infuriated with my misrepresentation or lack of understanding as to your intentions and responsibilities. I am sorry if you feel like I painted an unfair picture of what must be a taxing job. But we had 2 evaluations with our gatekeeper, 16 months apart, and her underestimation of my child (both times) would have had the potential to destroy a great deal of progress and lower the expectations of Maya’s educators if not for the fact that I was informed enough to get mad and fight back. And so, quite honestly, I don’t mind offending hundreds of you if this blog post empowers even one family to presume competence, dream big, and fight back.

An important addendum (6/4/13): In hindsight I realize that this post could read as if I am anti-low tech (or no tech) AAC, which I am definitely not. What I am against is the underestimation of kids with complex communication needs, and writing about our experience of having the TechSpeak pushed at Maya was the easiest example for me to extrapolate from. I think TechSpeaks, communication books, communication boards, BigMacs, PODD books, etc can all be used appropriately and wonderfully. I do *not* think that every child should start AAC on a dynamic display any more than I think every child should start AAC on a TechSpeak. 

Bottom line: AAC is not one-size-fits all----- the team should just be aiming high and presuming competence when they select a system, and the specifics of that system (high, low, or no tech) will be highly variable.

Dear Mom of a "Typical" Kid . . .

I wrote an essay for the website WhatToExpect.com and it went up today. In it I reflect on the trips that Maya and I took to the playground, back when she was little enough to be pre-preschool, but big enough to stand out as different from her same-age peers. I hadn't anticipated how uncomfortable I would feel when trying to mingle with other parents at the playground.

"In a way, she makes it easier for me. Because she-and-I-together, well, I know how that goes. It's-easy/it's-lonely/it's-playful/it-sometimes-stings, but it's a familiar sting. The pain of sitting with a group of typical moms and typical kids, listening to conversations ebb and flow... that pain is different, surprising, and I never know where the unintentional jabs will come from: a lament over a child's refusal to stop climbing on the furniture, a comparison of new favorite toddler snacks, or the sharing of the silly things that little kids say. There's nothing for me to contribute to those conversations, as I long for climbing and typical foods and toddler conversation. It's easier for me to keep my distance."

Read the full essay here, on What to Expect's "Word of Mom" blog.

Maya Finds Her Voice

 . . . in only 10 minutes.

This video is my attempt at a short-as-I-could-make-it partial-summary of our journey to find some sort of communication system for Maya.  It starts with a photo of Maya on her 2nd birthday and continues from there. It was kind of amazing to put together.







Answers to anticipated questions:

• The first app that you see is called Proloquo2Go, running on an iPad in the Otterbox Defender case.  
• The communication boards and picture cards for the Word Book were created using BoardMaker software. 
• The final app that you see, the one that we still currently use, is called Speak for Yourself and is running on an iPad in the AMDi iAdapter case (later footage includes the plastic keyguard that helps her not hit other buttons accidentally).

Our whole story doesn't fit in a 10 minute video, we also used sign language, labeled household objects with pictures, used a modified glove before we had a keyguard, and studied the work of many experts in the field of AAC (augmentative and alternative communication) as we went.

We are still a work in progress.

There is no finish line here. I make no claims at having done this perfectly, but we've done this all in the best way that we could figure out.

If you are a parent who is trying to figure out how to start the AAC process with your child, check out this link.

There's more information about our assistive tech journey here.

Maya & I sing

Some weeks are hard and filled with sadness.

If I had to write something now, it would be . . . well, it wouldn't be uplifting.

Instead, I'll let Maya sing. She loves calendars, the days of the week, schedules, the weather, etc.  I think she could likely run "morning meeting" if her teacher was absent. The other day I decided to pause during the  "days of the week" song (sung to the tune of the Addams Family theme song) and see if she filled in the gaps, and she did.

Here we are, waiting for the school bus, dancing around, and singing a little duet.

What my children think about AAC

Well, that's a misleading title, because I basically have no idea. Maya uses her talker, and her voice, and signs, and points, and doesn't much show what she thinks about her multi-modal communication efforts . . . not yet, anyway.  There have been times of yelling and intensity when she can't get her point across, but that's more about an inability to communicate than it is about her modes of communication.

And Will . . . well, he's a baby. I'm even less sure about what's happening in his head than I am about what happening in Maya's.

But in the past week, they've both given me little glimpses into their thoughts about Maya's AAC use, and her talker, and it's been very interesting.

Last night Maya and I were discussing dinner. The words in bold (with quotes) were things that were said aloud, the words in italics were with the talker. (bold + italics means I was talking and modeling on the talker)

Me: "Maya, for dinner you can eat rice and vegetables."
Maya: "No. I want" yogurt "please."

So she spoke "No, I want" then tapped yogurt and then spoke "please."  In a discussion on our Facebook page last night I was informed that this is called code switching.  It's really interesting, to me, because Maya was being pretty forceful at the time---she really wanted yogurt---and she stopped speaking to tap yogurt and then returned to speaking again.  It's important to note that she has no way of speaking the word "yogurt"---nothing clear, at least---but can clearly say "no I want please".  She knew I wouldn't understand her spoken yogurt and chose to use a different language (kind of) to tell me.  Pretty cool.

Now, onto Will.

I wonder about what Will will think of Maya's talker, since he's growing up with it from birth.  When will he understand that it's her voice, a way of speaking? When will he recognize that it is a part of her?

Last week Maya was playing with our pink iPad, which is not the talker but holds a back-up copy of her communication app.  (It also holds learning games, since the iPad that we use as the talker is solely for communicating and doesn't have any other apps.) A glitch had caused the voice on the pink iPad to reset to an adult male voice (clearly different from the young female voice that Maya uses). Maya started using the pink iPad to talk (with the man voice) to Dave and Will  . . . and Will thought it was hilarious.



This is particularly interesting because I experimented the next day, tapping things in the man's voice, and Will didn't laugh at all. He also doesn't laugh when Maya uses her talker.  It seemed to be the fact that she was talking to him using the man voice that cracked him up . . . perhaps similar to if I started talking to him in a silly, deep voice?

So, does that mean that (at 6 months old) he understands that the talker is her way of speaking? Does he recognize her typical talker voice?  It seems like possibly yes to both, although who could really say for sure.  It's interesting, nonetheless, and it will be interesting to hear both of their thoughts about AAC as they grow up immersed in it.

An Open Letter to the Parent of a Child with Speech Delays

Dear Parent of a Child with Speech Delays,

Good morning/afternoon/evening.  You may have clicked this link hopefully, seeing “speech delays” and wondering if I have some answer that will help your child.  You might be here through a googling session, during naptime or late at night or at work because it’s just eating away at you and the-time-to-act-is-now and what-more-can-I-do to help my child communicate.  You may have a kitchen drawer, or a shoebox, or a giant Ziploc bag full of tools: chewy tubes and bite blocks, z-vibes and jigglers, horns and whistles, and bubbles, oh my!

(If you don’t know what I’m talking about, and you are the parent of a child with a minor speech issue, like a lisp or a funny /r/ sound . . . then this letter isn’t for you.)

I am one of you, a tired parent of a child who was late (oh so very, very late, and she’s still taking her time, traveling the long, hilly, bumpy, exhausting road) to speech.  Like me, you may have 20/20 hindsight, realizing that the feeding struggles that appeared early on should have hinted at the oral-motor weakness and disorganization that lay ahead.  Or perhaps sounds and speech made appearances, only to fade away and leave you wondering if they ever really happened in the first place.  You may look back on the times that people complimented your baby for being “so well-behaved and quiet!” with a combination of wistfulness (because back then you didn’t know) and angst (because back then, should you have known?).  You may wonder if things would have been different if you had spent more time sitting face to face with your child and practicing sounds, should you have done more, do other parents do more, how-was-I-supposed-to-know-what-more-to-do.

The truth is simple: there’s nothing (in the realm of normal parenting) that you could have done.  And once you identified a speech delay and started with the exercises, the dramatic enunciations, the games . . . well, you were already going above and beyond what a “typical” parent has to do to help their “typical” child develop speech. 

Anyway, back to your speech delayed/apraxic/dyspraxic/nonverbal child.  Your child may have some speech, just less than he should. Or perhaps she has a handful of sounds, but nothing intelligible to anyone (except for you, her parent, of course).  Maybe your child is young enough and delayed enough that they don’t have much of anything (so well behaved and quiet, indeed).

Maybe they are on the road to speech.  Maybe they aren’t yet.  Maybe they just aren’t, end of sentence.

If, in your quest to help your child communicate, you haven’t yet tried something besides speech therapy (as in, therapy aimed at producing and refining oral speech), the time is now.

Please, let the time be now.

My daughter, Maya, is almost 5 years old. She can clearly speak approximately 15-20 words.  With her talker (an iPad with a communication app) she can speak approximately 700 words, with thousands more available at the touch of a button if she needs them.  With her voice, she can say "Mommy" and "Daddy". With her talker, she can tell me that today is Friday and she’s going to the therapy gym in the afternoon and she wants to ride on the big swing and the tire swing and do an art project.  With her voice she can say “bus.” With her talker, she can tell me who she sat next to at school and what they talked about and what she wants to have for dinner and whether she’s feeling tired or happy or cranky.  With her voice she tells me “no.” With her talker she tells me “No way, Jose.”

With her talker, she tells jokes and is sassy and is proud, so proud, to tell us things and to connect with us.  If she only had her speaking voice, I would barely know her.

Maya & her talker (photo by Keith Wagstaff, TIME.com)

As we have spent the past three months searching for an ideal kindergarten for Maya, we have seen many (many) schools and met with numerous doctors and therapists for evaluations.  We have heard, over and over again, “I’ve never seen a preschooler use a communication device the way that she does.”  I have seen (too many) K/1/2 classrooms populated by nonverbal kids where I am told that certain children "are learning to use communication boards" or "have just started learning how to use an iPad app to communicate" or "will soon be evaluated by the assistive technology team and will probably start using a communication device in the near future."

This is not because these children needed to wait until K/1/2 to be ready to use a communication device.  This is not because preschoolers aren’t capable.  This is because most preschoolers (and pre-preschoolers, frankly) don’t have the access to the augmentative and alternative communication (AAC) that they need. And, not to put too much pressure on you (since I know that you have so much on your plate, and raising a child with special needs is overwhelming, I know) . . . but you’re the one who needs to make this happen. 

It’s on you.

It’s on you, unfortunately, because this is a rapidly growing field, and the therapists/teachers that you work with might not be aware of all of the new stuff out there.  It’s on you because speech therapists carry giant caseloads and aren’t technically required to be highly educated about or suggest AAC .*, **  It’s on you because the special needs schools and teachers won’t meet your kid until kindergarten, and then will spend a few months getting to know him before requesting as assistive tech evaluation, and now your kid is 5/6/7 and frustrated and acting out (or worse, shutting down).**  It’s on you because the preschool teachers/therapists have never seen a little kid on a big, total communication device/app and wouldn’t even think to suggest anything outside of a communication board or PECs, because they aren’t even aware that that’s a legitimate possibility.**

It’s time to expose your child to AAC, to give them alternative ways of communicating. If you haven’t heard of AAC, it's awesome, and I’m going to walk you through a few options in just a minute.  If you have heard of AAC, but haven’t tried it yet, I’m going to take a paragraph to dispel a few of the concerns that might have caused your hesitation.

First, the use of AAC will not prevent/impede the development of speech. Here are a few links and research that disprove this fear, and an important study that showed babies who learned sign language simultaneously with speech developed speech at the same timeline as a control group and ended up with larger vocabularies.***   Second, your child doesn’t need certain skills, understandings, or cognitive abilities to start using AAC.  You don’t wait for a baby to become skilled or “smart enough” before you speak to them . . . there’s no need to wait any longer to start modeling AAC use with your child.  Third, you don’t need to wait to see if maybe speech is right around the corner---AAC is not a “last resort.” Speech will keep on progressing alongside of the progress made communicating with the AAC system.  Fourth, your child does not have to be older!  We started toying with different things around 18 months, and I wish that we had started earlier. We had to switch systems a few times before finding the perfect one, but the work that we did from 18 months-3 yrs laid the foundation for when we found her perfect system at 3.5 years.  Start simply, start small, just get started already.

Are you convinced yet?  Think for a moment of what it would be like to have to rely on speech for communication, knowing that you couldn’t get any sounds out that made sense.  Imagine that you were in an accident that rendered your voice useless and landed in the emergency room . . . people talking at you, asking you questions . . . what would you do?  Hopefully someone would bring you a piece of paper and a pen . . . you know, an alternative way of communicating, a way in which you could be immediately successful while waiting for your voice to heal.  Your child needs the same.

So where do you go from here?

1. Talk to your speech therapist about AAC. If they don’t know much about it, talk to other speech therapists, or teachers, or a developmental pediatrician.  If you can’t find answers call a special needs school in your area and talk to their speech therapist.  If there’s a local children’s hospital or therapy center, talk to them. If you can find a support group for parents of kids with special needs, speak to the person who runs the group.  Post on local message boards asking for the names of top speech people in the area. If there are advocacy groups for people with disabilities in your area, talk to them. Don't be afraid to reach out to groups that serve specific disability populations (groups for children with cerebral palsy, Down syndrome, autism, etc) even if your child isn't a part of that population-these groups generally want to help families, regardless of your diagnosis, and may be able to steer you towards good resources. Keep asking around to see if you can get referred to someone in your area that knows about AAC/assistive technology and can point you toward a local expert or resources.

2. If your child has an IEP/IFSP, speak to your caseworker or the official in charge of the document. (You might want to work with your child’s preschool/school on this, if they are already school age.)  You want an assistive technology/augmentative communication evaluation, and you want to request it, in writing, immediately.   (I’m not sure if different states have different processes for these things. This is a good topic to discuss with the people/groups that you found in point #1.)

3. If at any point in Step 1 or Step 2 a professional indicates that they don’t feel like your child is ready, that they aren’t familiar with multiple options (example: they say something like “Oh sure, we have several children using -insert app name-,I guess we could try that” instead of actually creating an individualized plan), or they seem otherwise resistant, then proceed onward to the next steps.  You’re going rogue.  You’ve got to take the lead on this yourself. You need to get educated so that you can do it correctly. You can do it. (I had to do it, too.)

4. It’s time to hit the internet and read about AAC.  Join (or peruse) a message board/online community for parents of kids with special needs, kids with speech issues, kids who have apraxia, etc. (yahoo groups or babycenter groups might be a good place to start).  Use google.  Look for some general posts/articles about AAC---good buzzwords would be: PECS, picture cards, Boardmaker, communication boards, communication books, PODD books, AAC devices, AAC, AAC apps, communication apps.  Read other people’s stories, learn about how children use different types of AAC.

5. In conjunction with #4, search YouTube. Look for videos of kids using different communication systems.  Use the same buzzwords that I listed above.  See that it’s possible, see the different skill levels.  If you think “my kid couldn’t do that” just remember that most people don’t upload the videos of all the times that it didn’t work.

5 and a half: It's time to remember that this is a marathon, not a sprint. You might be reeling from too much information. Take a night off.  Then get back at it.  Go slowly, but keep going.  Now that we have a system in place, there are entire months in which I am not purposefully researching, just modeling and working our system. Then I start reading again.

6. Realize that you’ll probably end up trying several things, and that’s ok.  Here is a list of things that we tried with Maya, along with links that will take you to blog posts (most of which have pictures and/or video) so that you can see we’ve tried many things, too:

• picture cards/PECS
• household labels (this wasn't really a system, just a supplement to the picture cards)
• Proloquo2Go (a communication app that I customized in a probably-incorrect way to use as a starter system.  In the end, she could use it but I didn't love the set up and it's growth potential.)
• Communication Boards I used Boardmaker, and it worked well. I still make occasional boards for specific circumstances.
• The Word Book A big, fat homemade binder for when single communication boards weren't enough any more. It worked well. 
• Tech/Speak She used it at school. A perfectly good tool, but I felt limited by the vocabulary size. Not a great fit for us, but a great fit for many.
• Speak for Yourself This is the AAC app that we use now. If you check out my YouTube page (dmgnieder) you can see a bunch of videos of Maya using her talker. This post has a few in progression over our first four months.

edited to add that we also did a 6 week trial with a Dynavox Maestro communication device. Clearly (as I forgot about it) it wasn't the best fit for us, but it great for many others.
 
7. Realize that AAC is really, really individualized. It is not a one-size-fits-all operation.  It’s possible that you saw something in #6 that seems like it could work for your child, or that what you saw gave you an idea that would need some tweaking, or that you saw nothing helpful at all.  That’s ok.  Some children start AAC with a high tech device/app, some start with a simpler choice-based app, some start with a communication board, some start with tangible cartoon picture cards . . . some start with laminated photographs of actual objects . . . some start with using the actual physical objects themselves (and if your child can't use their hands to point to cards/pictures/device, don't worry, then there's eye gaze technology).  Any starting point is infinitely better than not starting at all. (Prior to picking a system I recommend that you read some of the research and opinions of the people that I mention in #9--they may guide you toward some of the more sound, research-tested options. If you're going with an iPad app, Jane Farrall's list is a good place to start.)

8. Once you find something that seems like it might be worth trying with your child, it’s time to learn about best practices and how to start using it.  Picking out an AAC system seems like the trickiest thing ever, until you have it in your hands and realize that now the tricky part (so-what-the-heck-do-I-do-with-this-thing-now) starts now.  For me, the most important lessons (and reminders) have been about modeling and waiting and using core words as soon as you can.  This was my take on modeling & waiting.

9. Find out who the experts are and read their stuff. Research papers, websites, sites that mention them, etc.  Go hear them speak if you can. They will teach you about best practices---how to use your child's system with them, get them to embrace it, and teach them how to communicate. Here are some people who know their stuff, inside and out: Linda Burkhart, Cathy Binger, Karen Erickson, Jane Farrall, Carol Goossens', Gretchen Hanser, Katya Hill, Jennifer Kent-Walsh, Janice Light, Caroline Musselwhite, Gayle Porter, Gail van Tatenhove ****

10. Find some good AAC blogs/resources, follow them on Facebook/twitter/Pinterest, and don’t be afraid to reach out.  On Facebook I particularly recommend PrAACtical AAC and Lauren Enders---both are very active and share tons of articles and links.  I also like the core word suggestions from the Center for AAC & Autism, and I follow several apps--including the aforementioned Proloquo2Go and Speak for Yourself.  If you want to find people to follow on Twitter start following the hashtags #AAC #augcomm #SLPeeps #ATpeeps. Some of my favorite twitter users (tweeters?) are: @CommGreenhouse @USSAAC @parkerrobin @ISAAC_AAC @janefarrall @SpeechTechie @speak4AAC @sayit_any_way   (Oh, and our FB page is Uncommon Sense Blog and my twitter handle is @UncommonBlogger) ****

11. A few other possible helpful sites:  YAACK, Speaking of Speech, AAC at Penn State, AAC Intervention, AAC Kids@PSU ****

12. For extra motivation from a parent who went against the advice of various professionals and fought to get his daughter an AAC system, read Schuyler's Monster: A Father's Journey with His Wordless Daughter  Besides being interesting and motivational, it's also just a good book (and I'm picky about books, so when I say "good" it means entertaining, witty, and solid from start-to-finish).

13. *This step is important* Remember that I am just a parent. I am not a professional. I am the mom of an adorable nonverbal girl who went out into the great wide internet in search of a solution that could help my kid communicate.  (although while I am "the mom" I'm not "just the mom") This blog post is the closest I can come to a master list: the reasons to try AAC as soon as possible and all of the steps/tips/tricks that I can think of giving someone who is newly on the road to AAC.  Undoubtedly, I am leaving things out (and I’m hopeful that some wise professionals and parents will fill in the gaps by leaving helpful tips and resources in the comments section of this post--please!).

Good luck.  This needs to happen.  You have to try.  The internet is wide and there are resources out there.  And the first time that your kid "says" something through AAC that they aren't able to say with their speaking voice, all of this work will be totally worth it.

From,
A mom who wishes that she knew earlier

* Per ASHA, in their position paper on the roles/responsibilities of SLPs with regard to AAC

**If you are a speech therapist, preschool teacher, preschool therapist, kindergarten teacher, or elementary school therapist who read this paragraph and thought “Hey lady, wtf? I’ve been suggesting that stuff for years!”  . . . well, thank you.  Thanks for pushing our nonverbal kids who are capable of so much more with regards to AAC and assistive tech than most people give them credit for.  This paragraph is about the others---who are, unfortunately, the majority that I've encountered.

***Holmes, K. M., & Holmes, D. W. (1980). Signed and spoken language development in a hearing child of hearing parents. Sign Language Studies, 28, 239-254 and Daniels (1994), in “The Effect of Sign on Hearing Children’s Language”

****Undoubtedly I have forgotten some amazing people/websites here.  Please, knowledgeable folks, remind me (and everyone) who else we should be reading/following in the comments below.

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.

Counting for fish, and counting fish

As of this weekend, we are suddenly all fish, all the time.

We decided to take another shot at potty training, this time with a new plan.  We told Maya that if she can fill up her whole sticker chart with stickers (earned when she uses the potty) then she can get a pet fish.  Dave got a 10 gallon tank down from the closet (because when you're a zoology lady, you always have at least one 10 gallon tank tucked away somewhere) and we put it on the bookcase in her room.  She is so excited.  After she earned 5 stickers, we put water in the tank.  10 stickers will earn her some new glow-in-the-dark stars for her ceiling.  Other little rewards will be built in along the way (trips to the pet store to pick out gravel, plants, etc).  We're only on Day 4, so it's too early to say whether this will be the magic thing that works, but so far it's definitely working better than anything that we've tried before.

It's not a great picture, but you get the idea. As of last night, she's up to 8 stickers. She also gets m&ms every time she gets a sticker.

Because we're hyping up the fish, we've been looking at a lot of fish pictures.  I printed some out to hang on the bathroom door, and printed an extra one for her to take to school and show off.  On Monday morning, as we were waiting for the bus, I shot a quick video of Maya counting the fish pictures on her paper.  I point at each picture and she says the numbers.

Besides being adorable, the video is impressive because she's been making so. many. sounds.  In the past 6 months she's had a vocalization explosion.  She used to be mostly silent, only making noises for things that she knew how to say (like dada or buh (bus))---but suddenly she's trying to imitate everything.  6 months ago she only had one vowel sound, now she has several.  It's especially cute and brings with it a lot of hope for the future---as her approximations get more accurate, others can understand her speech better, and that's really good for her.  She loves saying "hi!" and having someone say "hi" back---it's clearly exciting for her to use her voice and have someone respond.

Here it is, Maya counting (with subtitles):

 

A Tale of Two Evaluations

As we trudge through the process of figuring out the best kindergarten fit for Maya, we are once again back in the world of evaluations and reports.  This is not a fun place to be, as any parent of a child with special needs can attest to.

First, I will concede that these reports are necessary.  It’s important to identify areas of strength and weakness, to determine whether a child qualifies for services, and which skills should be targeted in the future.  That all makes sense.  But then things start to break down.

Evaluations are often conducted by people who have never met Maya prior to said evaluation.  These well-meaning people tend to greet her enthusiastically, which makes her clam up and withdraw a bit, smiling shyly.  In turn, the evaluator lays it on a bit more thickly, lots of cheerfulness and toys laid out and “show me your talker!” and “maya-do-you-want-to-play-with-blocks-or-maybe-a-doll-or-maybe-this-school-bus-or-maybe-do-you-like-crayons-better-do-you-know-your-colors-maya-do-you-like-pink-do-you-want-this-pink-crayon-maya-maybe-can-you-say-crayon-with-your-talker-no?-yes?-well-maybe-you-can-say-pink-or-if-you-don’t-have-pink-you-could-say-red-I-guess-maya-do-you-know-how-to-turn-your-talker-on-is-it-with-this-button-here-hmm”.  And Maya just smiles.  Or maybe tries to hide her face with her coat. And maybe sits on the floor.  And maybe knocks over a toy or giggles and tries to swipe a crayon. 

If the adult is putting on a show, Maya is generally content to watch. 

I know this, but can’t get over the awkwardness of saying what I really think needs to be said . . . “Hi, I’m Dana.  If you want her to pay any attention to you, your best bet is to start talking to me and ignore her for a few minutes.”  (because then she’ll act like a typical preschooler . . . hey, what about me? Don’t you want to see my talker? Hey---is that a school bus?!?!  I want it!)

Typically, I sit back. It’s the scientist in me.  I don’t know what protocol evaluators are following and I don’t want to skew results.  I imagine that they, as professionals, have a big bag of figurative (and literal) tricks, and that they will present them in some sort of interventional and motivational hierarchy.  I imagine that they are masters of body language and social intelligence, and will push in and pull back until they have figured out how to dance with Maya through the evaluation.  I imagine that they are skilled experts. 

As it turns out, sometimes they are.  Sometimes they are decidedly not.

In the category of decidedly are not, let’s revisit Maya’s psychological evaluation from 2010.  This evaluation, required for determining whether she qualified for a therapeutic preschool, was also our first attempt at cognitive testing.  This evaluation, and the report that came as a result of it, had been so abysmal that I wrote a longer piece about it---here’s an excerpt, so that you can get a look inside the appointment:

I think back to the afternoon of Maya’s psych evaluation.  Oh wait, I mean the evening of the eval, as the psychologist arrived 45 minutes late, only getting down to business at 6:15, thirty short minutes before the girl’s bedtime.   I eyed her suspiciously, as she looked to be about sixteen and appeared to have never interacted with a young child.  She handed me a survey to complete and I sat off to the side, dutifully penciling in bubbles, as Maya laid face down on the floor and eyed the psychologist suspiciously through one eye. 

Maya!  Do you want to play with the DOLL?  Which toy is the DOLL, Maya?

(Maya made no motion.  I think she even willed herself not to blink.)

Here-can you see them, Maya?  She carefully moved her line up of toys closer, now an inch from her nose.  Which one is the DOLL?  Do you want to play with the pretty DOLL, Maya?!

Maya turned her head away, saw me sitting across the room and smiled at me.  I stifled a laugh.  I wouldn’t want to play with that crazy lady either, silly girl. 

And so it went for the next forty-five minutes.  Toys were presented and ignored.  Requests were made and ignored.  At some point it struck me that this woman might end up writing that Maya was catatonic unless I intervened, so I made her sit up and engaged her in some play with a few blocks.  See, she listens, I thought, you are just very boring and now it’s bedtime.  When she left I joked to Dave “Well, it shouldn’t be a problem getting into a specialized preschool.  That lady most likely thinks that Maya is a vegetable.”

But now, on paper, it didn’t seem funny anymore.  The typed words looked official, the opinion of a professional, and this professional said that Maya’s cognitive functioning was abysmal.  I skimmed her observations and then this gem jumped out at me: Alexandra was not able to stack blocks. 

Who the hell is Alexandra? 

You mean to tell me that the late, unengaging psychologist was also not yet proficient at copying & pasting?  Really, lady?  Your report is bringing me the news that my child is severely impaired, and you can’t even do a quick proofread?  I imagined her quickly printing off the report and running out to the bar with her young, unburdened friends.  I hated her.

Further on, she wrote that Maya’s “expressive language skills were slightly stronger than her receptive language”.  Translated, this meant that she could speak more words than she understood.   Since she could only say one word (bye!), this meant that the psychologist assessed her to understand zero words.  Zero.  How would she explain what I saw as I peeked into the living room, where her OT was saying “Maya, pick up the yellow duck and put it in the box”   . . . and Maya did, of course. 

That psychologist didn’t know Maya.  Not at all.

That psychologist was not a skilled professional (professional, yes, skilled . . . eh).  She did not have a big bag of tricks, figuratively or literally or even imaginarily.  And lest you think that I am unfairly bashing the therapist, let me say this: I know Maya can be a challenge, a little puzzle.  But she was 2.5, and toddlers are tricky---she should have been prepared to coax her out of her shell.  And if she couldn’t---no worries! I was sitting right there, and would have happily, accurately, unbiased-ly answered questions about what she could and could not do. But she didn’t ask.  And so I fault her, fair and square.

The report from this evaluation contained one sentence that gave me pause:  Maya’s cognitive functioning is in the Extremely Low Range as compared to her same age peers.  This score is in the 0.4th percentile, meaning that she performed as well as or better than 0.4% of children her age.

Given the inaccuracy of the observations about her receptive language, I should have dismissed it outright.  And eventually, I did, but for the first hour or so after I read it, it stung.   And I doubted Maya, and I doubted myself, and I wondered if this lady could have seen something that I haven’t been seeing.  And then I shook it off, but a little dark shadow lingered . . . because no matter how sure of yourself and your child you are, when you see terrible things written about them on official letterhead from an official professional a dark shadow of doubt lingers, at least temporarily.

And that brings us to December 2012.  Two years later.  A new evaluation team (2 people instead of one), a new psychological evaluation (this time for kindergarten), a new report.  This time, with truly skilled professionals---two women who were ready for a challenge, who sat on the floor when Maya sat on the floor, and climbed up to the table when Maya wiggled into a chair.  Women who turned to me when Maya was shy, giving her a break.  When they weren’t getting far they asked me what I thought might work, welcoming my input and encouraging me to pull things out of my own perpetually stocked bag of tricks . . . m&ms and stickers and a juice box, oh my!  And Maya worked for them, answering questions and taking breaks and playing games, and 90 minutes later we had more accurate data than anyone had ever collected about Maya, ever.

I waited anxiously for the report.  Weeks went by.  I was nervous, and mad at myself for being nervous.  My hopes were up and I hate getting my hopes up.  I have a file full of reports that have taught me that they will not be accurate (in my opinion) and I will be agitated by the results.  And I’ll end up with lingering shadows that take weeks to clear away.

The report arrived, via email.  I saw it on my phone.  We did dinner and bedtime and I sat at my computer to open the file and read it, 10 pages of details and data and recommendations.  I skimmed it first, to see if it was worth reading, and then went back to read it carefully.  And finally, someone got it right.

I don’t generally talk about the numerical details of Maya’s reports, because –quite frankly- they are nobody’s business but our own.  However, I share the details below to boost the confidence of others who are receiving reports during this evaluation season and deflating.   I deflated a little when I got the 2010 report, even though I was pretty sure it was inaccurate.  The numbers made me scared and sad for Maya: 0.4^th percentile, 1^st percentile, 0.3^rd percentile.  These are not good numbers. 

The new report has better numbers, but it has bad numbers too.  The bad numbers roll off my back now, as we’ve seen them before. The good numbers, though, those are new . . . and even more important than the numbers are the qualitative observations that are embedded throughout the report.

75th percentile:  Her receptive language is “high average” among her same-aged peers. (yes)

50th percentile:  Her academic readiness is “average” among her same-aged peers. (yes)

While certain tasks were attempted, it is felt that scores are likely an underestimation of her capabilities and potential. (yes)

Her performance on the current evaluation should be considered as a baseline of her functioning at this point in time, but should not be used as a long-term prognostic indicator. (yes)

It’s been almost 4 years since we entered the special needs world, creeping nervously into Early Intervention.  I was scared in the beginning, and worried too much about assessments and milestones and where we were and the future.  As time passed, I understood Maya more and more, and I saw her strengths and her cleverness and I believed in her, so much so that I knew the reports were not gospel .  I’ve listened to many scared moms tearfully speak about bad reports and I want to tell them---don’t worry, your child is the same child that they were before you opened that envelope.  That report might not be accurate.  Keep the faith. 

Until now, I had no data to back up my “keep the faith, ignore the reports” general stance . . . I could have just been a biased, delusional mom.  But now I have a report that confirms that the other reports were clearly inaccurate.  I have a report that says that she is smart and she understands, as much as an “average” kid her age does.  I have a report that says that I was right to trust my gut.  And with this report in my corner, I’ll say now what I wish someone could have said to me back in 2010:

The truth of the matter is that reports are just opinions on letterhead. Some reports are informed, thorough, intelligent, professional opinions on letterhead, that should be valued and reflected upon and future decisions should take their findings into account.  Some reports are mis-informed, inaccurate, not-correctly-spell-checked, best-used-for-sticking-in-a-file-and-forgetting-about opinions on letterhead. 

Reports are a means to an end.  You need them to get services,  and you should read them to get details that you might need to use to fight for services, but read it as if it’s written about a stranger. Don’t take it personally.  Bad things in reports are actually good, as they’ll help you to get additionally therapies/interventions/support for your child. Note any weaknesses that you actually agree with, so that you can target them with your child in the future.  After you highlight what you need, file it and forget about it.  Your child is the same person as they were before you opened the envelope.  You know your child better than the evaluator.  This evaluation does not have any power to predict your child’s future . . . and it shouldn’t have any power over you. 

Breathe.  Cry about it or laugh about it or do both.  If it helps, make a photocopy and shred it up, or burn it.  Then do something special for yourself (because if you have to read these reports, you deserve something special for yourself).  Then, move on.  And keep the faith.