September Specialty Series: Using AAC (Alternative and Augmentative Communication). A mother's story.

To continue my September Specialty series, I want to introduce Merry. Merry is an amazing mom, and I wanted to feature a mother because in my opinion, parents are the experts on their child.  I think it's important professionals keep this in mind, so I'll say it again.

Parents are the experts on their child.

Her daughter is using an AAC (Assistive & Augmentative Communication) device at the age of 2 ½!!  I thought she was the PERFECT guest to talk about AAC because many parents aren’t even told it’s an option, or they are told their child is too young.  I’m a big believer that mothers know their child better than any professional and are their biggest advocate.  Merry is proof of this!  Thanks Merry for guest blogging!

Tell us a little bit about yourself and your child with apraxia.

I am a young stay-at-home mom with no background or experience with speech or medicine. I’m actually a funeral director by trade and education. However, I consider myself very science-minded and I try to do things in an evidence-based manner whenever possible. I think that’s been very helpful to me in my journey as a special needs parent.

My daughter, Elanor, is my only child. She is 2 ½ and absolutely loves music, dancing, animals, and most children’s television programming. She is especially fond of Blue’s Clues. She has a lot of trouble learning to speak due to childhood apraxia of speech. She also has dyspraxia, which is basically a full-body apraxia. This makes a lot of other things hard for her, including things like running, jumping, or putting on shoes. She has had her communication device for about a year now. It is an iPad mini with a communication app called Speak for Yourself and an amplified case called an iAdapter. We call it her talker.

Image: http://imgur.com/RppfuAn

When and how did you discover your daughter would benefit from a device?

I remember being at a friend’s daughter’s birthday party when Elanor was about a year old. There were several parents all bunched into a corner talking about their children’s speech problems. Most of their kids were older, and some were already in speech therapy. My husband and I looked at each other kind of pridefully, because that was one problem we knew for sure that Elanor didn’t have. At one year Elanor may not have been walking (or anywhere near walking) but she had a good number of words, probably about 10.

At 15 months when Elanor still wasn’t walking, we followed a random tip and pursued ear tubes for her. We had heard that fluid in the ears could mess with a child’s balance, and that seemed to be Elanor’s problem. We had about a month of many many doctor’s appointments to look at her ears and talk about tubes. It was during this time that my husband and I kind of looked around and realized she hadn’t said anything in a while. Sometime between 12 and 15 months she lost all of her words and most of her sounds and we had barely noticed. It was assumed at this point that the ear tubes would fix everything. She had ear tube surgery at 16 months and walked two days later, but she remained nearly silent.

At that point we were already in the process of getting early intervention from the county due to the walking issue. At the first assessment they were no longer concerned about her walking but shared our concern over her speech. We were told to come back in a month if she still had no words. It was during this nearly silent month that I happened to read something in a mommy forum about apraxia of speech. A lot of it really seemed to fit. Elanor couldn’t stick out her tongue, she couldn’t pucker to kiss. She had a lot of trouble eating. Her speech had progressed backwards instead of forwards. The symptoms really seemed to match. Of course, I couldn’t be sure about any of the main symptoms of apraxia (like inconsistent errors in speech) because in order to see those symptoms she would have to be able to speak, which she really couldn’t.

During one of my many googling sessions I came across a video on YouTube of a child with apraxia using a communication device. He was using Proloquo2go (a communication app on the iPad) to ask his mother for a snack. I remember how incredibly happy he was to be able to tell his mom exactly what he wanted. I knew then that I wanted that for Elanor. I made an appointment for a speech evaluation with a private clinic. We discussed a communication device at the very first appointment and things went from there. Elanor was 18 months old when she started using her device. Here is a video of the first time she ever used it:

Video: https://www.youtube.com/watch?v=WnxEEy_9i4I

What advice would you give to other parents who have been told their child is not a candidate for AAC.

Here is what I have to say to them: your child deserves an opportunity to communicate their thoughts and needs without having to wait to learn to speak and they CAN do it. This recent blog post from a Speak for Yourself creator basically blows away the entire concept of needing certain skills to be able to use a device: http://www.speakforyourself.org/2014/07/22/myth-augmentative-alternative-communication-aac-pre-requisite-skills/

I know that Elanor continues to be one of the youngest AAC users that many speech pathologists have ever seen. This isn’t because toddlers can’t do it, it’s because they haven’t been given an opportunity to do it because people think they aren’t ready. They are. Your child is too.

A big myth regarding AAC is that the child will “give up” trying to talk if they are given a device.  However, research refutes this.  As a mother though, how do you respond to this?

Using a communication device is hard. It’s slow. It is so much easier for me to say things out loud than to say them on the Elanor’s device. For Elanor that’s not true because speaking is so difficult for her, but the moment she can speak a word intelligibly she will always choose to speak it because it is faster and easier. Not only that, but not everyone has a device. Everyone around her is speaking aloud all the time. She would obviously prefer to be doing that.

I also think this worry about your kid “giving up” on speech is really misguided because the device helps with speech so much. There are a lot of theories I’ve heard about why this is the case. What I know for sure is that it works. The more we push Elanor to use the device the more her speech blossoms.

Here she is a couple of weeks ago telling her Daddy “I don’t know”, her first real sentence.

Video: https://www.youtube.com/watch?v=30Ygjgp-4Mk

Who programs the device and who teaches your child how to use it?

Me and me. I know this is different for some people who get their device through their child’s school, but since we bought it ourselves we are in charge of it. Programming Speak for Yourself is actually really easy. That’s one of the reasons I chose it over some other communication apps. There’s also a Speak for Yourself User’s Group on Facebook that is incredibly helpful with any questions about programming or anything else.

I am able to quickly add words and pictures to Elanor’s device to make it more personal. She has all her family members and friends names and pictures in there, every cartoon character, every cartoon. Her device is really very specialized for her.

Here she is asking to watch Blue’s Clues:
Video: https://www.youtube.com/watch?v=rZAPrJu89VU

As far as teaching her how to use it, I mostly do that through modeling. This means that I speak through the device just like she does. If you think about it, children learn to speak by hearing us do it. It doesn’t make sense for them to learn to use a communication device without seeing someone do that too. I get guidance on how to do this from Elanor’s speech therapists and also from the creators of Speak for Yourself, who are incredibly involved and helpful. Sometimes it seems tedious, especially if it doesn’t seem like Elanor is paying attention. I learned pretty quickly that she is always paying attention, even if it doesn’t seem like it. It is incredibly rewarding to see her use a word or sentence I showed her days before when she seemed entirely uninterested.

Many parents of children with apraxia report increased frustration and tantrums due in part to their inability to speak or communicate in some way.  Did you have a similar experience and find that the device reduced your child’s frustration?

I didn’t have that problem before we got the device because she was so young when we got it. She has had some means of communication, whether it be ASL or her device, for a long time. However, now that she has become more verbal I have noticed some frustration when I don’t understand what she is trying to tell me verbally. I usually have to redirect her to the device, where she can usually tell me what she was trying to say. That’s why it’s so important for me to keep modeling and using the device with her even though she is able to talk more now. It is an amazing source of relief for both of us!

This video shows her right after I spent about 5 minutes trying to figure out what she was asking for:

Video: https://www.youtube.com/watch?v=VL1hiF3aKu4

How did you pay for the device?  Are there funding sources?

The first device we had was an iPad 2. My parents bought the iPad (around $500) and my husband’s parents bought the Speak for Yourself communication app ($200). We later replaced the iPad 2 with an iPad Mini, which we paid for ($300), and we used GoFundMe to crowdsource funds for the amplified iAdapter Case ($400).

Compared to dedicated devices like a Dynavox, it’s pretty inexpensive to purchase an iPad mini and communication app. We’re talking the difference between $500 and $5000-$10,000. That being said, $500 is still a lot to come up with out of nowhere. For funding sources I suggest family members, churches, and local charities. I know most churches would love to fund something like this for a child in their congregation.  CASANA also gives away iPads once a year to kids with apraxia, so that’s something to look into as well.

Do you have any additional comments/recommendations/or final thoughts that you want to tell parents who are experiencing the pain of having a child who struggles to speak?

I just want to say that having this device has helped my daughter immensely in ways I never knew it could. I am a part of many groups of parents with children using AAC, and all of these children are doing better than they would be without a device. Their speech isn’t hindered, it’s helped, and their parents have been given a chance to really know them.

Almost every day on online apraxia groups I see parents complaining that their child can’t tell them things. They don’t know their child’s favorite things. They don’t know what their child did at school that day, etc. I sympathize with these parents, but I can’t empathize with them because I honestly don’t know what that’s like. Elanor can tell me all those things and more with her communication device.

I guess in the end what I want to tell all the apraxia parents out there is that you can know your child, and they can have a voice now. There’s no need to wait until they can speak. This technology is available and it is amazing. It can change both of your lives forever.

Incredible Merry!  Elanor is so lucky to have a mama like you! 

To read more about Merry and Elanor visit her blog: http://aacabc.blogspot.com/