Deciding to use an AAC device with my toddler…

TToddler with AAChis post is more personal than most of my blog posts, but I wanted to share a bit about deciding to use an AAC device with my toddler.

I struggled with the decision to use an AAC device with my toddler (not due to a lack of good information and evidence that it was needed and possible) but because I just couldn’t picture how it could ever work in our daily lives with a toddler.  However, I tried it, and it worked!  I wanted to share our personal experience to encourage others to give AAC a try, and to provide practical ideas from my pediatric occupational therapy background.

What is an AAC device?

AAC stands for “augmentative and alternative communication” device.  For a detailed description, see this post by the American Speech-Language-Hearing Association.   The short answer is that AAC is anything a person uses when they struggle to communicate in the normal way.  It could be as simple as gestures or single pictures on cards or as complex as a computer program run by visual gaze.

For my daughter, we had been using simple AAC options since the day we meet her.  For many reasons, she struggled to communicate with us through normal speech.  One was her age; she was 18 months, and most toddlers are developing language skills.  Second, she was adopted from China, so she didn’t know English (and my Madarin was limited to about 20 phrases.)  Lastly, she has a disability that makes her tongue not function properly for speech.  The combinations of factors means that we need alternative ways to communicate with our daughter.

What we did initially:

We used body language to communicate through facial expressions, pointing, gesturing, and demonstrating.  This worked well for her to understand us as she learned English and gained receptive language skills (understanding what is being said to her).

We used “baby sign,” which is a simplified version of sign language that focuses on common words and nouns for infants and toddlers (words like more, mommy, daddy, potty.)  We focused on sign language for a long time to give her a way to communicate back to us to get her basic needs met.  She did very well with imitating and learning signs, but there were a few limitations to this approach as she got older.  First, her fine motor skills limited how well she could perform many signs, as many of the signs require hand positions that are too hard for young children.  As her vocabulary grew and she wanted to express more complex thoughts, we began to realize that the general community (teachers, friends, and family) would not be able to understand her signing and gesturing.  Lastly, she was limited in gaining some specific language concepts (ASL certainly would allow her to do this, but baby sign language just wasn’t able to do this).  If you look at the typical language development of toddlers, it begins with core nouns (mama, dad, puppy, ball), but then quickly progresses to common words like “it,” “mine,” “here,” or “and, ” which are not typical signs we teach with baby sign.  She had simply outgrown baby sign language.  (For more information on AAC compared to sign language, see this detailed post from Uncommon Sense.)

When we decided we need to do more:

We had focused on non-verbal communication (signing, body language, and gesturing) for about a year, until my daughter turned 2 1/2 years old.  There was a day I can recall her gesturing and signing to me “cat” “head” and “potty.”  I wasn’t getting it, so she ran and got a book and showed me a picture of a cat with its head in the toilet.  She had become a master of charades, acting out her meaning while making up a variety of signs to go along with the real signs she knew.  It was adorable, but it was also clear that her communication skills were not keeping up with her cognitive development and her need to communicate.

A second very important factor was my daughter’s behavior.  Kids who can’t communicate are frustrated!  This is typical for toddlers, but most children start to grow out of this phase as they became preschoolers and can express their needs, wants, and opinions.  My daughter was struggling to communicate and was getting frustrated, and functional speech was a long way off for her.  We needed a more effective solution.

Moving on to an AAC device:

I started to research options.  There is a lot of good information about using AAC options with children with developmental delays and autism (see resources at the end of this post).  There is also good information on using options with school-aged children.  But what about a 2 year old?  How can the AAC options help my child learn language and how can they adapt and change as my child’s skill progress?

Pacer centerFor those local to Minnesota, I highly recommend a visit to the PACER center with the Simon Technology Center.  (See my post on this amazing local resources in Bloomington, MN).  They offer a free consultation visit to help families learn about technology options for their child, including AAC options.  They have real example equipment you can play with, as well as a trial program to allow you to take options home and try them for several weeks.  They provided my family with a packet of information with links to more resources.  The information was evidence-based and focused on current best practices for AAC use with children.  They also gave me a write-up specific to my daughter that I could use in treatment planning with my school and therapy team.

I was still skeptical about how using a device might look in daily life with my toddler (I can hardly keep my toddler fed and clean, much less keep a computer with us to use 24/7.)  I founds lots of professional info (for speech and occupational therapists), but not much personal information for parents and families, especially for younger children.  Then I found this blog: Uncommon Sense.  It is about a family’s real life experience using an AAC device.  The blog shows tons of families using a variety of devices in all aspects of life.  This is exactly what I needed- to see and hear a young child using it in real life. One of my favorite posts from Uncommon Sense: Communication Before Speech

OK, we were done waiting; my daughter needed access to language now!  So we dove right into it.  If you are going to do it, do it right.  Well, “right” may have been the goal, but it did take us a while to get there (and we are still trying).  Keep reading to find out what we did and why.

I had a lot of worries:

 

How do I get it? Should I get it myself, through health insurance, or the school?

This is a complex answer that has many variables depending on where a person lives and what insurance they have.  Some health insurances will cover some AAC devices (mostly devices that are dedicated AAC devices, like a traditional Dynavox system).  For children with more complex needs related to communication that might require specific options like switches or visual gaze systems, it is worth finding a clinic that can help you work through your insurance.  Going through insurance can be a lengthy process, so start early and know that you may still be responsible for some costs of the equipment.

There is a growing popularity of using iPads that run applications for language (such as Minspeak and Proloquo2Go) due to lower cost and ease of acquisition.  In my experience, insurances will not cover iPads.  There are several grant programs for iPads for children with apraxia that are worth exploring (see this list of grants for special needs as a starting point), and in Minnesota many families can get iPads through county waiver money for special needs children.  Just remember: a new iPad is not needed.  There are lots of used ones around that can make this much more affordable.

Many children get their communication devices through their school system, which the school is obligated to provide if your child needs it for educational purposes.  This is a wonderful resource, but the limitation is that the school still owns the equipment- what will your school do on weekends, holidays, and over the summer (or when they graduate)?  If AAC is working for your child, start looking into how to obtain your own.

Our daughter has one provided from school to use at school, and we provide her one to use at home.  Our insurance would not cover the iPad or language application.  We chose to buy the application ourselves to use at home, rather then have our school district provide it to us (just a personal preference).

How do I actually set this up? What did it really cost?

  It took some work upfront, but most of the obstacles were easy to overcome.ipadsetup

  • The largest cost variable is what application to buy for an iPad (not everyone can use an iPad, but it was perfect for my child due to convenience and cost).  We choose the Proloquo2Go app (yearly about $250), but others to check into are Minspeak and  Tobii Dynavox Compass.  I would highly recommend looking for a program that allows a child to build to full language use (because you never want to under-estimate what a child is capable of learning!) and one that is based on solid research about how children use and develop language.
  • Having several iPads isn’t necessary, but it is really nice for backups. I bought used iPads online (we have 3 total now) for about $100 each.  I found screen protectors and cases on Amazon for about $20 per iPad.  So far the $120 investment in one iPad has held up for at least 3 months of daily use.

    Case and screen protector

    Case and screen protector

  • We did find some accessories to be helpful:
    • Grandma sewed us simple straps in varying lengths that get used in the car, grocery cart, stroller, and in bed.
    • Grandpa made us simple wooden stands to hold the iPad in a semi-upright position for best fine motor access and best visual scanning (also to keep it off the floor where it was getting stepped on).  I painted them to make them more fun, then used hot glue to put non-skid material on the bottom.
    • We also found volume to be an issue (the iPad wasn’t loud enough in classroom or public settings), so we used velcro to attach a small Bluetooth speaker (about $15 online).
    • We also invested in a portable battery backup, since used iPads don’t have the longest battery life.
    • Throw in a few extra chargers for convenience as well (bought in bulk online).
  • So total with accessories, I think each set-up ran us about $150 total.  We decided to make 2-3 sets for ease of use around the home, daycare, and school.
  • We decided to go with a less expensive set-up, knowing that it is less durable (although so far the durability has been sufficient) and will likely need replacing.  We are assuming that we will go through several iPads, and that is OK.  I’d rather replace a few used iPads than be worried about breaking an expensive piece of equipment and ending up limiting my daughter’s use of her communication device.

Will she lose it or break it?

messy play with AACProbably.  I have labeled every part with contact information, but she is  a toddler.  Just like we have lost shoes, mittens, and toys, pieces will get lost.  That is just part of life with a toddler.

I’ve tried to make it reasonably durable.  It has gotten covered in food, paints, and all kinds of sensory play with no major problems so far.  A good case and screen protector are a must for messy kids.  Using a stand also helps to keep it from being stepped on.

How would it sound? and Can I make it sound like a normal toddler?

toddler aac At first I was very turned off by the synthetic voices that were often adult voices.  Then I learned that most programs have a children’s boy and girl voice.  I love that Proloquo2Go has a voice of a little girl that is much more natural sounding (learn more here).  I will say that my toddler could tell the difference as well and responded much better to a natural child voice.  It took some time to learn the details of the program, but we found we can alter how it says almost any word (the pronunciation and the inflection).  So if she wants to yell “stop it!”, she has a button that says it loud and clear with emphasis behind it (just like a normal kid).  It also has all kinds of sound effects (like animal noises) that normal kids might want to us.  A second benefit of choosing a program with a more natural sounding voice is that if you child is going to imitate the speech of the device, you want the best model possible.  I hear my daughter attempting to imitate her favorite phrase frequently, but she certainly prefers the ones that sounds more child-like with natural inflection and emphasis.

It took some time on my part to add in the normal toddler phrases that get used at my house, but the programs are highly adaptable.  The program may be pre-programmed to say “May I use the bathroom please?” but I could change it to the more age-appropriate language for a 2 year old, “I need to go potty!”  I also added words and phrases to reflect my daughter’s personality and age (“mine,” “sister did it,” “I miss daddy”, etc.).  Proloquo2Go does come with the appropriate “core” words for young children, but I felt they were aimed more at 4-5 year olds, so I edited it to be more appropriate for a 2-3 year old.  This took some thought and time, but was achievable.

How practical is it?

AAC in bedTo be honest, it is not really practical.  Anything that makes children unique is often not practical.  Wheelchairs, braces, epi-pens, or glasses, are all extra work for parents, but our children need them.  My child needs this, so it is my job to make it work.

We are still in this process, but we are planning how to use the iPad in all settings.  This means that the iPad goes to bed with her (normal children get to talk when stalling to go to sleep), in the car (normal children love the captive audience of a driving parent), at all meals (it has gotten covered in spaghetti and applesauce many times), to music and gymnastic classes (yes, all the other kids want to touch it, and that is ok), and even outside.

We have found a few exceptions in which the iPad can’t be used- water in the tub, snow, sand play.  We have created a back-up system.  We took screen shots of the major pages of the app set-up, then printed them in color, then we got it laminated (you can buy laminating pouches for home), and connected with a ring.  An easy, light-weight back-up system she can use to point to symbols for communication.

Some children carry their device with them, but with my tiny toddler this isn’t practical yet.  This means I spend the day hauling it around and setting it up near where-ever she is.  Practical-no.  Necessary- yes.  Achievable- Yes.

What will other people think about it?

It certainly stands out and people are curious.  Children especially want to know what it is and how it is talking (but I have been surprised in group settings how quickly most kids learn to leave it alone once they know it has no games on it).  I found that letting other children try it has been really reinforcing to my child that it is a valid form of communication.  At our house, everyone talks on it throughout the day (called “modeling”).  I found that a peer modeling on the device has been a highly effective learning strategy. We even got a second iPad to allow her sister to use it throughout the day, which has been very motivating.  I get a few looks from adults about my toddler carrying around a iPad (I am sure they think it is a toy), but such reactions have been minor.

Is my child ready?

adopted childA lot of parents (and a lot of teachers and other professionals) promote that we need to wait until a child is “ready.”  I had to really think about “ready for what?”  She was certainly ready to communicate (most children are).  She wasn’t ready to sit and listen, she wasn’t ready to be responsible and take care of an iPad, and she wasn’t already using another form of pictures effectively (like PECS).  It didn’t matter.  She needed to communicate now.  After researching more about best practice, I learned that waiting is not a good idea.  Best practice promotes that there are no prerequisite for using an AAC device.  Give a child access to full language and to normal language development whenever possible, otherwise we are only limiting potential.  I learned there was no need to do a step-by-step process of using simple AAC devices and then building up to more complex devices, but a child should be closely assessed and should trial devices to see what matches their abilities best.  My child needed a voice-output, dynamic touch screen device (an iPad) with a full language application (Proloquo2go).

How will I pick the right application or program?

I took on the task of selecting the best program for my daughter’s needs, and it took a lot of time and research.  I am a pediatric OT, so I have the background to make sense of my options and think through the critical components.  I would encourage families to seek out a professional assessment.  In the Twin Cities, Gillete’s has an AAC program and PACER can help consult.  Most school districts can provide these services as well.  However, I would encourage families to do their own research.  Know what is best practice and evidence-based.  Go in with some knowledge so you can be an active team member and make sure your child’s needs are being well met.  AAC assessment is a small field with not many professionals being highly knowledgeable- keep looking until you find the right person to help you.  Please do not let people underestimate your child.  Make your choice based on what you want your child to achieve long-term, not just what they can do right now.  I wanted my daughter to achieve full language, so I needed to pick a AAC device that will allow her to achieve that goal.  Also know that whatever you select, you will be using it as a parent as well.  AAC isn’t something just to be used in speech therapy or at school.  It is all day, every day, so be comfortable with your choice.

What not just use PECS, that is what school uses?

PECS is a picture exchange communication system used by most school settings (and many therapy settings) to assist with communication.  It has a lot of benefits for development, but it is often a short-term solution during beginning phases of language development.  When well implemented, it can provide a child a great way to request and get their needs and wants met from adults.  However, it is very limited in its other communication roles, specifically in allowing children to develop novel and spontaneous communication.  PECS may be useful as part of a larger therapy program, but it is not a way to get to full language.  It has some benefits: it is cheap, convenient, and most school staff are familiar with it; however, these should not be a substitute for considering more complex AAC options.

How do I work with my school on this?

First you may have to tell the school you are interested in exploring all options for communication, including AAC options.  They may not be familiar with all the AAC options, so do your research and have ideas to share.  Seek outside advice if you need it (in the Twin Cities, visit PACER).  Talk to the districts AT (assistive technology) person, and make a plan.  Ask to trial several options for a few weeks (or longer) each and evaluate the results.  Each child needs something different, so try to work as a team to help your child.  Don’t be afraid to advocate if you think your child needs more than what is being offered.

Your IFSP or IEP is the documents that should outline how and when any assistive technology will be used with your children meet their educational goals.  For more info on writing an IEP that fits your child’s needs well, check out the following resources:

Could my child learn to use it?

toddlerAACAdults take for granted how natural technology can be to children.  It is motivating, especially when it gets attention and needs met through effective communication.  My toddler had almost no experience with technology, so it took a few weeks of letting my toddler play with a tablet for her to master the touch screen motions (swiping, touching, dragging objects, etc).  It took another few months for the fine motor control to develop for selecting small targets on the screen, but it came quickly.  Without any specific instruction (just modeling of its use), she learned to navigate to the home screen, delete unwanted words, and select desired folders to find more options.

My older daughter’s progress was even more impressive (she is preschool age- check out my video of her using the iPad after about 3 months of using at home with her sister).  She easily navigated through multiple screens to create 3-6 word sentences, including grammar structures (verb tenses and plurals) with minimal instruction.

The summary is that the technology of a well-designed programs can be intuitive to young children who are learning language.  Motivation and attention are limiting factors to my child, but ability to use the technology is not.

Will anyone else how to use it?

AAC fridge cheat sheetThis has been one of the biggest obstacles.  My daughter is young enough that she needs adults around her to model its use for her to learn (just like typical children as we talk to them).  This means that other children and adults need to use it too (called “modeling”).  The children were easy- they loved it and took to it very naturally.

Adults have been a little harder.   I did several things to help myself and others generate ideas of how to use it.  We found that focusing each week on specific target words and vocabulary gave enough guidance to really model effectively.  I purchased an online subscription to the database of images that matched our application.  I can then make “boards” to print with example phrases or sentences that we are targeting that week.   I’ve made visuals on our fridge as examples for everyone to use.  I also printed off screen shot of the main pages and gave copies to teachers and caregivers so they can learn the locations of the main buttons to use with her.  There is a learning curve, but so far anyone who wanted to learn has been successful with a little practice.

I am mostly concerned with her educational staff learning to use it (her teachers, aids, and therapists).  I have realized that it is my job to train them and provide the information they need.  This means I take the responsibility to be in charge by learning to use the program very well, then I make simplified directions that are step-by-step for anyone to follow.  The jury is still out on how well this will work in community and school settings, but this is my job as a parent and as an advocate for my daughter.  The most proficient user in my house is my older daughter (preschooler) because she spends hours playing and talking with it.  Practice, practice, practice.

Will this stop her from trying to talk?

So far, I would say no.  The research says no as well.  The voice output on the iPad continually gives her a verbal model for what she wants to say.  She still imitates those around her and attempts to talk all day long, the AAC device hasn’t changed that.  The ACC device is a tool to learn communication and language.  The oral-motor skill (articulation) of speaking verbally can come later, when she is ready.  I think there will be a time later when she is ready to push more verbal language and articulation skills, but for now the technology has helped her make huge jumps in her communication that are not realistic for her verbally yet.  I’ve also had the opposite question- will it help her talk?  I don’t know. It provides a verbal model, but I know it isn’t a replacement for real people talking as a model.  It also isn’t a replacement for working on oral communication and articulation; those will still be necessary on their own.

Will it work?

AAC data sheetWe have days of great success and days she refuses (just like a normal toddler!).  I have just started to get some spontaneous communication from her on the device.  She has even begun to argue with me.  I will model a simple phrase like, “paint all done,” and she responds “more paint.”  Her vocabulary for foods has been expanding every day, especially to ask for things she knows she can’t have (M&Ms, suckers, ice-cream, french fries).  She just giggles and shakes her head no when asking for M&Ms for dinner, just like a normal kid!  She loves to ask “where’s kitty” and tell her sister to “stop it!”  She uses it mixed with signs and vocalizations, which is to be expected and is fine.  Just like any other skill, it takes time and effort to teach her to use it.  It took lots of practice for both my daughter and myself.

Our family is systematically focusing on target words each week and taking notes on what she is learning and using.  We also attached a data sheet to the back of our primary iPad and check off each day if we attempted to model the targeted words.  At the end of the week, we note if our child used the target words when directly asked, when it was modeled, or if she used it spontaneously.  This has proven to us that the more we model, the more she learns.  It also lets us know what we need to work harder on in future weeks.

The end result:

Day 1 video of her exploring an AAC app on the iPad for the first time (2 1/2 years old).

Progress after about 3 months using Proloquo2Go (just turned 3 years old).

I have a toddler who runs around like a wild monkey who can successfully use a high-tech AAC device.  It takes work for me (the parent), but it was worth the time, effort, and money because my child can communicate.  She has been using it to comment, ask questions, make requests, make jokes, and express her emotions.  We are even turning a corner where sometimes instead of tantrumming, she stops and says something (and then often still tantrums, but at least I know why 😉 ).AACplaying

 

I share this information to guide other families who may be on this journey.  Please feel free to contact me with any questions, as I am happy to share the wealth of information I have gathered.  Below are some resources you may want to check out online:

Paige Hays is an occupational therapist who provides in-home, pediatric occupational therapy services in the south metro area of the Twin Cities, MN. She is a mother of 2 girls, avid DIYer, and a highly skilled and experienced OT. She specializes in working in pediatrics, with diverse expertise ranging from cognition and sensory issues to working with children with neuromuscular disabilities or complex medical needs. www.paigehays.net