It Takes More Than A Village

It might take a village to raise a child, but to raise a child with special needs, it takes a team. A specialized team. One team member to address feeding and speech, one to manage gross motor development, one for smaller fine motor movements, and one for special instruction. One such team became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started receiving therapies through Early Intervention, but I would guess it was right around 10-11 months old. She was little and adorable and we knew that she had some delays, but really had no idea how significant her challenges were or for how long she would need therapy.  I had mixed feelings about the therapies, some of which I’ve already shared. We had a very full schedule and it was difficult not to have some resentment over being tied to so many appointments per week, especially when I saw other women with babies in the neighborhood meeting for coffee, having playdates in the park, or meeting up at the playground. I would have fleeting interactions with them as I whisked tired Maya out for 30 minutes between commitments, determined to get some “normal” time into her life.

While the therapies were sometimes a source of frustration for me, the therapists (by and large) were not. Earlier this week I randomly ran into one of them in the city, and as I hugged her I couldn’t help but think that bystanders who witnessed the vigor of my attack/embrace must think that she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We lost a few (that’s a nice way of saying we gave a few the boot) before finally settling with the team that would carry us through until preschool, the team who would teach Maya and help her to grow stronger and smarter, the team who became my friends and sounding boards.  Each one of these women brought something to the table, and each played a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and development and milestones . . . they taught me how to be Maya’s mom, how to be the confident, capable mom of a complicated child.  Certainly, I would have been her mom (and a good one at that) with or without them---but they gave me practical guidance, tangible ways to aid in her progress, and (of equal importance) the camaraderie and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one else did---certainly not me, or our family, or friends with typical kids, or even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest answer---and if the answer was yes, we knew what to try . . . and when it was no, I got my first glimpses into just how outside-the-box Maya would turn out to be.  They could draw from their experiences with other kids who followed similar paths to a certain skill, they knew which toys or household items offered the most bang for the buck, and they could see when we were working hard, even if progress wasn’t coming as fast as we had hoped.

Together, the therapists and I learned when it was appropriate to push Maya, and when to back off.  We worked as a team, each provided the other with new bits of information about what she was able to do, or secret motivation tips. Every time that they confirmed my suspicions (It seems like she might drool more than other kids her age---have you noticed that? I’m not sure if that should be slowing down now.) or agreed with my assessment of progress (Did you see her reach across midline? Was she able to do that last week?) I became more confident in my ability to collect data, the sharpness of my observations, and the accuracy with which I would be able to discuss my daughter with the countless doctors that we were frequently visiting.  I can only see it now, in hindsight, but I needed the validation that they provided when they saw me working with and interacting with Maya—their approval helped me rest ever so slightly easier, knowing that we were doing the absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was frustrated or Maya was having a week of temper tantrums. I was at the end of my rope with appointments and reports and bad news and lack of progress, and the therapists became my sounding board. They were the only adults that I was interacting with, they were in my home, and they knew everything about Maya---it made sense that they were often my news-guinea-pigs . . . the first people that I would tell about a genetic test we were running, or an evaluation that had yielded surprising results.  Their thoughtful (as in full-of-thought, not as in kind) reactions, follow-up questions, and words of wisdom helped me to process things more deeply and figure out exactly how I would relay the information to our family and friends (and readers).

The therapists balanced out the well-meaning-but-not-very-informed input from those not privy to the reality of raising a child with special needs. Those who weren’t in my living room, on our gym mats, watching me stretch and position and move Maya’s limbs, who would say “Well, my doctor said that they’ll basically learn everything themselves with enough tummy time . . . maybe if she spent more time on her belly it would help?”  Those who weren’t in my kitchen, as I sat across from Maya with chewy tubes and used one hand to steady her head and open the side of her mouth while she cried and I tried not to clench up, who said “My friend’s daughter did the same thing---she was a really picky eater but they just kept offering the same foods and eventually she realized that she had to eat what they gave her.” 

Collectively, the therapists saw my eyes fill with tears more than anyone, ever. (I am generally not a crier.) And they did a great job continuing with rational conversation and pretending that it wasn’t happening, which was the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t obligated to do so, and that expression of love gave me the hope and belief that others would see how amazing she is and love her, too.  They treated her with tenderness, but also didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that table, sit up, and help put these markers away.).  They appreciated her sass and jokes, but forced her to get down to business and do her work.  They treated her like family, and (I believe) they looked forward to the time that they spent with her.  The honesty of their feelings for Maya—the fact that they knew all of her challenges and struggles, all of her stubbornness and sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her with open arms and loved her without conditions---it touched one of my first, deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that they would have if she was “typical”? What if she doesn’t have friends?  The EI therapists were her first friends.

For the therapists reading this, the ones who go above and beyond, the ones who love their little patients and listen to their (sometimes fragile) parents, the ones who go home at night and think about the families that they work with . . . thank you.  I’m thanking you on behalf of the parents who are tired, or angry, or stretched too thin, or emotional, or shy, or introverted . . .the parents who aren’t remembering (or aren’t able) to thank you themselves (I have been all of those parents, by the way).  We know that it’s not in your job description to love our kids, or to be our friends, but you are in a unique position---kicked into the inner circle of a family in crisis---and the ways that you offer support are making a critical difference in our lives . . . even if we can only see it in retrospect.  Keep up the good work. You are changing lives. Thank you.

Especially for KN, NB, VC and CT. Thank you.

What To Say To The Parent Of A Child With Special Needs

In my time blogging about raising a child with special needs, I’ve received a good number of emails. There are several recurring themes to these emails: some about assistive technology, some about looking for specific resources or online communities, and several from friends and family members whose loved ones have recently had a child diagnosed with special needs. In this last group of emails, people often express their love and concern for the parents of the newly diagnosed child and ask me “What should I say to them?”

Another writer answers that question this week in her article “5 Things That You Can Say To The Parent Of A Child With Special Needs.” Disconcerting, though, is the fact that although I am indeed “the parent of a child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on what to say.

First, don’t tell me “I’m sorry.” Like, ever.  “I’m sorry” leaves a disturbing amount to interpretation. Are you sorry that my kid is lying on the ground and throwing a fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry that I’ve spent so much time in therapy this week, or that we had 2 doctor’s appointments yesterday, or that I’m stretched so thin that we can’t get together? Maybe “I’m sorry that things are so hectic for you right now” would fit.  Are you sorry that my kid has special needs? Well, you can keep that to yourself.  To me, “I’m sorry” comes across as “I’m sorry that your kid is the way that she is.” or “I’m sorry that you are burdened by your child.”  As I hear it, it’s an insult to my child (and a pretty bad one at that). I don’t want your sympathy, and Maya is not a circumstance to feel bad for, she is a lovely little girl. 

Second, please don’t ask for her diagnosis. It’s not appropriate to ask about other people’s medical information. Asking for a diagnosis is not making small talk, or breaking the ice----it’s asking about her private medical business. If you want to make conversation that acknowledges her challenges or “break the ice” you could ask about something specific, I guess, like “Is it hard for her to climb those stairs?” or “How long has she been using her communication device?”  If I want to share information about her diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re new here, Maya doesn’t have a diagnosis, which is particularly fun to explain to bold strangers. One time, in response to hearing that Maya didn’t have a diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had never met asked me this. While I was eating in a diner. With my family. Seriously.)

Now, possibly disregard everything that I just said . . . because while all of the above rings true for me, it might not for others.

Undoubtedly, there are some SN parents who would appreciate “I’m sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see the little conversation on our Facebook page last night.) I would hate those comments, but some would love those comments, while some just want to be left alone (ok, that’s often me as well, given my anti-social tendencies. I’m working on it.) and others are so happy to be out talking to other adults that they don’t care what the conversation is even about. So . . . I guess we’re all different? Who would have thought!

The bottom line is that there are no universal things to say . . . parents of kids with SN are as diverse as any other group of adults (parents of kids with brown hair, parents of kids who wear shoes, etc). Our commonality (and, to be fair, it’s not one to be underestimated) is that we have a lot on our plates . . . we are short on time and long on stress, we struggle with more than our fair share of emotional turmoil, we are usually fighting several battles at once, and we are worried for our children and their futures. But everyone responds to these stressors, and to fear of the unknown, very differently. Some people want reassurance (this will all be ok), some want sympathy (this is terrible, isn’t it?). Some people want to talk about the issues (tell me about the diagnosis), and some want to ignore them (isn’t the weather lovely today?).  

For those of you who have come here through a search engine because you’re actually trying to find the right thing to say, I offer this: just love the kids. Nothing meant more to me (and continues to mean more) than friends, family, and coworkers doting on my kid. All parents enjoy seeing others care about their kids, but for me (and, I imagine, for many other SN parents) the ideas of acceptance, inclusion, respect, and love are especially loaded.

For those of you who are just wondering what to say to the random SN parent that you might bump into at the playground, I would go with something simple. You know, like “Hi”. 

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 not. What I am against is the underestimation of kids with complex communication needs.