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,
(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.
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
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
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
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
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.
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
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:
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.
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.
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 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
---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) ****
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")
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.
A mom who wishes that she knew earlier
**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.