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.