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.

I will not be her limiting factor

At the risk of becoming a one trick pony, I'm going to hesitantly start another post on communication.

Exactly a month ago, I posted about finally making the leap and learning how to use BoardMaker.  The timing wasn't accidental.  Maya had been toying with the iPad for the past 8 months or so during her therapies.   I had made a few picture cards here and there, but without much direction.  As the summer rolled on I told myself "When school starts, we will get a system in place".  It didn't seem to make much sense to create a system on my own when preschool (filled with lots of people-who-know-how-to-communicate-with-nonverbal-little-kids) was right around the corner.

School started.  I waited for her to find her footing.  I spent a few hours learning BoardMaker.  I met with Maya's teacher and speech therapist and saw the types of boards they were using at school.  I made some boards at home.

I puzzled over the fact that having a finite number of words available meant that I was chosing everything that Maya was able to say.  I hated that.  It didn't seem fair.

I made keep making the Word Book.  With it, Maya will flip through the pages, pulling off words and handing them to me, eyes lighting up with delight when I say "alligator?" or whatever word she's thinking.  She understands that the book lets her get her thoughts out.  She plays with the PECs (picture cards).  She's starting to learn how to point her way through "I want" sentences.  It's exciting-beyond-words that she's able to tell us stuff.

But it's killing me.

Something about seeing her latch onto this book so quickly (and I really mean "latch on"--literally and figuratively---she's taking the thing in her crib at night . . . don't take my words away, mommy, I might need them tonight) is simulatenously delighting me and breaking my heart.  She's so young and teachable and interested, and I've realized that the limiting factor is her communication isn't her . . . it's me.

Sure . . . it's her mouth's fault that she can't speak words, but it's my fault that she can't communicate.

She doesn't sign much . . . because I haven't followed through with continuing to teach ASL, since her signs are garbled and while I understand them, others won't.  So I just kind of gave up on signing, I guess.  It wasn't a conscious decision, it just  . . . happened.  She started making sounds and gesturing and taking my hand to lead me to things and most of the time, I understood her.  So it was easy not to use PECs regularly, or any real system----she understood me and I understood her and it led to kind of a lazy complacency. 

Now she's starting to use the PECs, and starting to use the iPad more (it's taking me time to upload pictures and format the program, but we're using it in baby steps) and she's learning.  She's interested.  The learning is slow, but it will come.

I give her something new, and she tries to learn it. 
 
  
I'm the limiting factor. 



If I don't make-it-for-her/give-it-to-her/customize-it/set-it-up then her communication is limited.  And it's limited because of me.


This line of thinking . . . well, it's not so good.  I've been throw into a kind of emotional spiral over this . . . whatever I'm doing, I don't feel like it's enough.  But it's certainly enough to keep me in front of the computer day and night, googling and searching and emailing.  It's enough to cut into my sleep.  It's enough to obsess over.  It's an unhealthy place to be.

And then I realized that I can turn some of this negative energy from self-loathing into just plain old loathing (and not that any loathing is ideal . . . but of those two, I'd take the latter).  I am angry at "the system" again. 

I want Maya to get a communication device.  A real one, a big one, one that she can gently be exposed to now and grow into and use for years to come.  I want it soon. 

I want it because Maya deserves it.

But, somehow, it's not my choice.  I can refer her for evaluations (done).  The evaluators will recommend the product that they think is best for her (which I've found to be a gross misrepresentation of her ability).  I can protest . . . but, well, you know . . . I'm "just a parent".  I'm not the professional.  How could I possibly know more about this stuff than the professional?  The device that she receives from the Board of Ed will most likely just be the one that the professional recommends, and then we wait while a year goes by.  A year!  In a year I think she could make some very nice slow and steady progress with a device.

I am educating myself.  I am emailing people-who-know-things about augmentative communication*.  I am leaving messages with representatives from the big companies*. 

I am thinking that we will likely try to pursue getting a device privately, because why-should-Maya-have-to-wait-for-the-Board-of-Ed-to-believe-that-she's-ready?   I believe that's she ready.  Or at least approaching ready at a speed of faster-than-a-year-from-now.


   

I will not be her limiting factor.




And I won't let the professionals** be her limiting factor, either.


 


And, just because I can't resist sharing the cutenes:

Roar!!!!  This little dragon can't wait for Halloween.

*To this end, if you know anyone who knows about augcomm, has a child with a device, works in assitive technology, etc, please email me: uncommonfeedback@gmail.com 

**Just to be clear, "the professionals" are not the people at Maya's preschool.  We love the people at Maya's preschool.  "The professionals" are the city evaluator people/BOE.

Food fight (Mom vs. Toddler Tantrums)

Holy Screaming Tantrums

On Monday, Maya had her first ever true tantrum . . . like, the real deal. Over 20 minutes (23, to be exact), mostly filled with absolutely hysterical, high pitched screaming, giant tears . . . the whole 9.
The cause? Mango. Who would have thought that tiny, delicious, yellow pieces of fruit could cause such a breakdown.

The Background
One of my biggest goals right now is to expand Maya's food repertoire. I want her to start school with a diet that's more extensive than yogurt, meatballs, and cereal bars. She has the jaw strength and chewing ability to start trying more stuff, and I need to make it a priority to make her (wo)man up. With fruit season upon us, fruit has been goal #1.

Maya is also a much safer eater now---she's fully mastered how to use her tongue to thrust unwanted food out of her mouth, which is a mixed blessing. It's fantastic in that I don't have to be quite as panicked concerned with her possibly choking, but it's infuriating frustrating because she just spits things back at us over and over again. (And sometimes she thinks it's hilarious, too.)

So, back to the tantruming . . .
On Monday, she got into the high chair for a snack. When I presented the mango (which she had eaten, and enjoyed, earlier in the day) she starting having a fit and signing for milk. I told her "First 2 pieces of mango, then milk." Then she totally lost it.

I had already said "2 pieces, then milk." So now I was stuck. I taught middle school, I'm semi-well versed in children . . . if you say something, you have to mean it. (Sometimes I wish I could tell this to the folks I see at the playground who issue 37 "If you throw that sand again, we're leaving, Johnny!" warnings. I want to tell them "If you say that, you best be ready to hit the road. Otherwise, please don't say it. At this point Johnny, his friends, and half the parents here think you're a joke. And good luck the next time you try to issue an ultimatum, sister.")

So after 23 minutes of tears, she ate 2 pieces of mango and got her milk. She was sweat soaked, I felt terrible, but we all survived. When I tried the process again on Tuesday, there were still tears, but it only took 12 minutes and never reached the scream-like-a-banshee decibel level of Monday's showdown.

And then we took the show on the road
Without a doubt, the better the motivation (like the milk she loves so much) the more likely it is that she'll eat quickly. So this morning (and yesterday) I packed up some blueberries and we walked to the playground. My plan was simple: she needed to eat 2 blueberries before she could get out of the stroller and play at the playground. I was fully prepared to sit there for up to 40 minutes with her in the stroller, calmly saying "Do you want to go play? Ok, then you just have to eat 2 blueberries." every so often, until she either ate them or the clock ran out and we left. (I'm not sure if this seems mean. But she's got a good memory, and after a few not-getting-out trips I knew she would cave.)

After 13 minutes of sitting in boredom this morning, I changed the ultimatum---instead of "If you want to get out, you need to have 2 blueberries" it became "Do you want to leave? If not, you have to have 2 blueberries." She started to cry. I decided to take out my cell phone and start taping:




Some translations, if you're curious: At 0:29, she's saying "bye bye?!". At 0:51 I'm telling her "chew chew" because she's been getting scared of the fruit textures and forgetting to chew & swallow. At 0:54 I'm pulling her hand away because when she starts to get nervous she will take the food out of her mouth and throw it. 1:35 is signing "all done". The hand twisting at 1:38 is signing "play".

She's so smart . . . we've definitely crossed a bridge, past the brute force phase (sometimes we just had to muscle in whatever food we could) and into the logical reasoning phase.

What I've learned so far
This feeding stuff works much better if I have enough time set aside to wait her out. When we have to grab a quick snack between therapies, I need to stick to something that she won't fight. And when she is ready to fight, I have to channel my calm inner teacher and let it roll off my back, instead of getting emotionally involved.

The rest of our time at the playground . . .
. . . was super fun for us, but less so for Parker. I left him sitting outside, where he kept watching for us like a watchdog. Maya visited him a few times to cheer him up:

Hi, friend.