Wednesday, August 25, 2010

Q&A: How do you know when your child needs a speech device?

In the last couple of months I've been exchanging e-mails with Heidi, from AJ's Awesome Adventure. She had a speech question for me, and she said it would be OK if I shared my answer because it's a question I hear a lot:

I wanted to ask about Max's speech. When did you know it was not coming along at a "normal" pace? How did you deal? Did you try sign language, or was that the more difficult choice due to his limited arm/hand use? Why are you OK with auxillary communication systems? Help me to understand how they help, not hinder or make things easier. While I realize AJ is a different ball of wax due to his hearing loss, and learning to listen through his cochlear implants, I am curious.

When Max was little, this is a question I wondered a lot, too. I thought that getting him a speech device meant that he'd be codependent on it—and that he'd never develop speech. I also had to break through the mental barrier of accepting that I had a child who needed a communication device. I'd always known Max was at risk for having issues with speech, but I hadn't been prepared for the grief I'd experience of not having a kid who could say "Mama."

The stroke damaged Max's frontal and temporal lobes, the parts of the brain that control speech and language. As a baby, Max never babbled (although he did an admirable job of being exceptionally cute and smiley). He also had trouble retaining food in his mouth when he ate, a sign that he was having issues with tongue coordination (common with kids who have cerebral palsy). By the time he was three, he wasn't yet saying words. It was clear he was going to need some other way of communicating besides speech. For us, American Sign Language wasn't an option, because of Max's dexterity issues. He has some signs, but in the end, a communication device was the best possibility for him.

The more I researched it, and the more I spoke with doctors and speech therapists, the more I realized that a speech device would only encourage speech, not the opposite. The more means of communication Max had, the more he'd be eager to communicate in any which way he could. I wanted to be able to really understand his wants and needs, so I could nourish his intellectual growth, instead of constantly guessing or assuming what he wanted. I wanted him to be able to interact with other people, especially kids. Also, I didn't want him to get frustrated. He needed a way to express the thoughts locked up in his head, ones he couldn't quite get out of his mouth.

We started off using PECS (Picture Exchange Communication System) pictures. They look like this:

When Max entered preschool at three at a school for kids with special needs, the speech therapist printed out a whole bunch of PECS pictures in different categories (food, toys, bedtime, etc.) and created a binder full of them. We also mixed in actual photos. She laminated them, and attached Velcro to the back. When we wanted Max to choose things—say, at breakfast—we'd pluck pictures out of the binder (illustrations of oatmeal, pancakes, chocolate milk) and place them on a Velcro stand we made. It was his introduction to augmentative communication.

By the time Max was four, I thought he was ready to try a communication device. He loved computer stuff, and I figured it was worth a shot. The head of the speech therapy department said she didn't think he was ready, and a battle began. I knew she was wrong—what harm could come of trying one? It later emerged that no kid in the school had such a device. This department head didn't even know that our state had a lending library of devices through United Cerebral Palsy. We got Max an evaluation from a speech center at a hospital (necessary to get the school board to pay for it), who deemed him ready to try a device. By then, I'd decided to shift schools because I'd seen how non-progressive his was.

Max was on the Dynavox by age 5. Right before that we'd trialed the Tango, mainly because in a strange coincidence, a friend knew the genius guy who created it. It was so much lighter and cooler-looking than the Dynavox, and I loved that it used real kids' voices (unlike the more robotic-sounding ones on the Dynavox), but Max wasn't quite ready for it back then. He had a little trouble manipulating it, due to his dexterity issues.

We jumped on the iPad and the Proloquo2Go app. They've been amazing; I'll post an updated video of Max using them in the near future. Dave and I love this combo because they're super-easy to program and Max can carry the iPad around (the iPad is 1.6 pounds, vs. the Dynavox's 4 pounds, 11 ounces). Max loves 'em because they're easy to use and just plain cool.

Oh, and Max's speech? It is coming along. He's saying more words all the time and stringing ones together to form sentences, and even though they're not that clear he's trying. A couple of months ago, for the first time ever, I heard him lying in bed at night, babbling.

So, Heidi, here's what I say: Do more research online. Talk to the experts in AJ's life and see what they recommend. Find out if there's an association for the hearing impaired in your area that might have an expert to recommend. AJ might be fine with sign language alone, but it's good to educate yourself on all possibilities. We are our kids' best champions. And while we're no experts, sometimes we do know best.

If you've dealt with this topic, please jump in. Any experts out there who'd like to share?


  1. Excellent post. I'm a huge believer in exploring alternative communication as soon as we figure out that a child understands more than he/she is able to express. To my knowledge, most research shows that use of an SGD (SGD = speech generating device) actually facilitates language, rather than inhibiting it (which, like you, most parents are initally afraid will happen). I've got a little girl now who struggles so hard to speak and we are working SO hard to get those words out... but she's so very communicative. We brought in a Vantage for her and her eyes *lit up* as she learned she could express some of what was in her little mind. So very cool. I'm looking forward to seeing your video of the Ipad. It's not an option I'd heard about before; I'm excited to see more!

  2. Oh. Just realized I should probably clarify that I am a pediatric SLP. :)

  3. As a former special educator, I have to agree with Becca. Research shows that the use of AAC devices encourages speech--they do not replace it. And, as language starts to evolve, the child is going to use the easiest means to get their point across. I think we can all agree that vocalizing our thoughts is a lot easier than going through a bunch of computer screens to find what we want to say! So, they will use their own voice when able and "fill in" with the device.

    My son is 3 and has CP. We started him out on the iPad with proloquo a few months ago. In my opinion, it is soooo much easier to navigate than the dynavox. All of the overlays frustrate me! I had a student last year who had one, and I just couldn't get the hang of it with her. So, I knew that my son wouldn't benefit from a dynavox at this point because I'm not comfortable with it. If I'm the one working with him, I need to be able to navigate the system as well and feel comfortable with it. Thank goodness for Apple and their wonderful technology because the iPad rocks!

  4. I have no expertise, but you know how fascinated I am by this particular topic!

  5. I work as in Inclusion teacher in pre-schools and one of my biggest battles is convincing parents that teaching alternative communication is a benefit not a further delay.

    It's amazing which the kids really soar once they find a way to communicate and the parents often tell me that they can't believe that they though sign or PECS would delay them.

    The kids who will develop speech at some stage often do so faster, simply because the pressure to communicate is no longer on them and even if they don't have the verbal words, they can still express themself.

    Ipad's are becoming really popular here is Australia, especially with the kids who are in wheelchairs. They are so much cheaper compared to the proper electronic communication devices.

    Personally, I believe it doesn't matter how a child communicates, it's knowing that they can express themself that's important.

  6. My son doesn't use a device, but he did use ASL for a period of time. He has verbal apraxia and didn't say much of anything until he was 30 months old. When he started speech at 26 months old, he had a 12 word vocabulary. The SLP suggested that he learn ASL, and my husband was VERY opposed to it. Swore up and down that it was going to discourage him from wanting to speak. I trusted the SLP and really *needed* my son to be able to communicate his needs to me. he was so frustrated that he was having screaming hissy fits like 12 times a day, and over trivial ( to me) things. But you know what happened? Within a week of learning his first signs, he was using them to the best of his ability. As time went on, he picked up verbal words, but he seemed to *know* if his articulation was fuzzy, and those words he would sign at the same time ( for a time "sissy" and "kitty" sounded the same, so he would say "kitty" and sign cat). Within 9 months, he was at age level with his vocabulary, and speaking 99% of the time.

  7. This is a hot topic for me and my daughter. I have been trying to convince the school that my daughter is ready to try devices, but they keep telling me that she is not ready.
    We found a wonderful SLP who says otherwise and sent us for an AAC Eval. It did not go well since my daughter doesn't work well with strangers. It took months to get this Eval and I was very upset that it didn't end well.
    I called the seller from Prentke Romich and had him bring a Vantage Lite for us to try at home. We kept it over a weekend and got lots of video of Gracie using the device.
    Now, I need to send the video to the AAC Eval Hospital and also to the school. We are going to have a few meetings with the school about this and thankfully our SLP and the seller from PR have agreed to help me there!
    It has been a long road, but I am so glad that I started it. Gracie does much better than I thought she would do with the Vantage Lite.

    Ellen, I would love to hear more about what the differences are between the Dynavox and the iPad. Which is better for Max, and why? I am going to pursue getting the Vantage through our insurance company, but am also thinking about buying an iPad.

    Thanks for posting on this topic!

  8. I would be interested in hearing more about ProLoquo2Go versus the Dynavox too. We have an iPad and are considering purchasing ProLoquo2Go.

  9. Hi! We are about to head out to a weekend! I'll share next week. LOTS to be said about Dynavox vs. iPad and Proloquo2Go but here is the quick scoop, based on our experiences alone:

    Dynavox: 1) Not that easy to program. I mean, it's do-able, but it's not a breeze. When we'd find photos we wanted to upload we'd have to put them on a flash drive, then upload them, then maneuver around the categories to get them in the right place. We found it to be a real chore, and that's not a good thing—if YOU don't like using the device, things are going to be that much harder in the family. 2) It was impossible for Max to carry it himself, which made for much less independence. Kids who don't have issues using their hands/arms wouldn't have this problem, though. 3) It's just not cool-looking. I wanted Max to have something that other kids would think is cool, to help encourage interactivity.

    iPad/Proloquo2Go: 1) Super-easy to program. Say I want to add a picture to the "transportation" category on Max's iPad. I go to the Web, find a picture of a Sienna minivan (Max's fave car), copy it by just pressing a key, then jump to the Prloquo2Go app and plop it in there. It takes all of a minute or so. Each photo on the Dynavox could take us as long as four to five minutes. 2) Max can carry the iPad around. 3) IT'S COOL!

    Both of these devices have these canned, somewhat robotic-sounding voices. You can get a boy or girl voice, but still, they're not REAL (like the Tango). I'll bet that will change in the near future.

    We didn't pay for the Dynavox, our district did, but I know it was over a thousand. The iPad we paid for. It's $700 with 3G, and Proloquo2Go is $189.99. I don't know if a district would pay for the iPad/Proloquo2Go....

    Hope this is helpful.

  10. Great topic, Ellen!

    At three, Elijah has no verbal speech. Every once in awhile, we'll get something from him, but it can be months (or years) before we hear the same word from him again. In a lot of ways, he is trapped in his own body, with no way to get his thoughts and wants out of his head. He is so frustrated.

    I've seen first hand how communication devices have helped. Elijah was hitting his head on our floor multiple times a day. With the help of our school district, we figured out the things he was trying to say and we gave him a voice via "talkers" that have been placed throughout our house. His head banging has nearly ceased altogether. Communication devices made a huge difference in our life.

    I've heard, too, that these devices don't hinder verbal speech, but rather encourage it. We've seen that too. The more he's exposed to these devices, the more he seems to realize that he is capable in communicating in different ways.

    There is a certain grief in knowing that your child needs technology to speak. But I'm coming to the point that I realize that it's more important for him have a voice, no matter what form it comes in.

    We recently purchased an Ipad with Proloquo2Go. We're excited about it, along with the hope that his verbal speech will come along too.

    Max babbling in bed = awesome. :)

  11. Thanks for sharing. Interesting stuff.

  12. It is very well documented that Augmentative/Alternative Communication (AAC) does not hinder the development of speech. AAC helps children communicate when they can't talk. It opens so many doors for children!

    No matter what "main" method of communicating you use with your child-it is ok to mix them. It is perfectly ok to use sign language and picture (boards, notebooks, etc)
    even when your child has an electronic device of some sort. let's face it-in many cases signing "bathroom" when it is an urgent need is much quicker than grabbing a picture or going to where the child put the device down to touch the button.

    I just read a book "Schuyler's Monster" that tells of a non-verbal child-and her journey through diagnosis and learning to communicate.

    Oh-I am an SLP working with preschoolers.

  13. I'm really happy you tackled this topic. My son has apraxia and we were happy to teach him sign language because we were so frustrated not knowing what he wanted. But our families gave us flack for it, because they feared he wouldn't learn to speak. It didn't happen, of course. Now he speaks with extra help from signs when he needs it. Any way you can get your kid to communicate is a good thing!

  14. Another question...
    Since the district paid for the Dynavox does it belong to them? Was Max able to bring it home and use it as much as he wanted to? Did he have to leave it at school?

    Right now, I am thinking that I don't want the district to pay for our device. I want it to be Gracie's, so she can use it all the time and not be limited by the school's rules. Maybe it doesn't work the way that I thought it did?

    Thanks again!

  15. I think, technically, the Dynavox belongs to the district, but we could take it wherever--no limitations, no rules. If your district would pay, let them! Assuming rules are the same, that is....

  16. I hope that you don't mind, but I included a link to this blog in my blog about ipad apps for Autistics. Thanks for an informative review!

  17. Ellen great post. Cj is seven and at times can say the words, more, water, ma, daddy, ya, up, hi and I love you. He is trying to make some sentences lately. He is great at making choices and is going to start kindergarten this year. Communication is my top priority this year for his IEP. The school has been working on eye gaze systems. He is doing better every month. However I am beginning to be a huge ipad believer. He can point. I have many friends whom agree! He is going to Children's Hospital in Boston this fall for an evaluation. I am going to talk about the iPad. My lord the device the school was talking about cost $12,000.

  18. @The Henry's-

    You will want to ask your district about their policies re: AAC devices.

    yes, they belong to the school. most districts allow you to take it home-but some make you go through hoops (proof of home owner insurance, etc.) some don't allow it home over the summer-most do. Technically it can be taken away at any time-but I have never heard of it happening.

    If you buy it-the school can say they won't use it. They can say they won't program it. (Not saying this happens-and there are ways to fight it successfully...but it "can" happen)

    In both cases there has to be a trial of a couple of devices for the school/insurance to pay (unless you are just paying for it with cash/credit card) If the school buys it there is a chance they recommend a lower device-or a company they are more familiar with. Dynovox and Prentke-Romich people seem to be die-hard for "their" company. However, this (one company) does makes some sense if more than one student has a device in the class-the pictures are the same, they program the same, you can make one page and upload it to another device etc.

    The biggest thing is communicate with the school, teacher and SLP during the process so they at least feel part of the process (or so that they don't feel like a bomb has been dropped-an adversarial one)

    Also, you when you get it-you need to state clearly in the IEP WHO will program it, what activities WILL it be used for-especially in the classroom--at least in the beginning. Even the best teachers are intimidated by aac.


  19. Emma has been using different forms of alternative communication since age 2. She now has the iPad with the Proloquo2Go and an alphabet board for spelling. Her language has only continued to improve in clarity, volume, quality, and response time. I totally think AAC's are huge assets to kids, improving intellect and cutting down on frustration (in both the child and the parent).

  20. At 2.5 years-old, Bertrand is non-verbal and has impaired gross and fine motor function. An AAC is perfect for him. He now has an iPad with the simple iComm app and we may be upgrading to Proloquo2Go once he starts school and is working with a speech therapist more experienced than his current one.

    My sisters and I grew up in a two language household and did very well. Therefore I've been signing with Bertrand since birth since the redundancy can only help with learning, communication and minimizing frustration. B has come up with signs on his own that don't require hand use. :)

  21. I have to jump into the discussion here to add some specific infor about PRC products (and how they differ from others like Tango and Dynavox) AND to correct a statement someone made about school allowing a personal device.

    If you purchase a device through your insurance, it is deemed to be "medically necessary" and therefore cannot be denied use by the school. If that device is your child's primary means of communication, the school must make accommodations (which includes having someone trained on how to use it and program it and integrate it into the classroom). Just like if your child needs a specific kind of wheelchair/ventilator/enteral cannot dictate it's use if denying that use "adversely affects educational performance."

    Second, the PRC devices are organized in a completely different manner; the core language of the device is arranged the same on every device so users can utilize what's called "LAMP" = Language Acquisition through Motor Planning. Also, the "sales" reps from PRC are not sales people; they are all trained speech pathologists or special educators with certifications in assistive technology.

    No, I don't work for PRC (but would be proud to say I did!). They changed our lives a little more than a year ago. My son has multiple disabilities including CP, autism, health impairments and visual impairment in one eye. We tried PECS and a variety of other devices including simple recordable switches, Dynavox, Tango, etc. The problem with those, for my son anyway, is that they require constant visual scanning and the ability to quickly page through either actual notebooks of PECS cards or pages of categories. The Vantage Lite allows him to learn vocabulary through auditory feedback, visual feedback AND motor/muscle memory or sequencing.

    Since we got the device, we were amazed to discover that our son had taught himself the alphabet, numbers, colors, shapes, and SO MANY verbs! His world is continually expanding and his ability to participate in it is, too!

    The staff at PRC don't just sell a device and leave it for your SLP/school to figure out. They provide extensive training and continuing support. Our rep (shout out to Janet Lehr!) has offered to come to school to trai my son's team on HIS device, using the vocabulary he already knows. She has a multitude of teaching techniques and information. We would be LOST without Nik's Vantage Lite.

    That said, I want to try an iPad for him, too. Not for communication, though; for the multitude of additional special ed/special needs apps that have been developed so he can continue to learn new things and participate in the social aspects of life as well.

    I don't think there's ever any ONE right method; it's gor to be whatever works best for your child. But don't let fears about school or insurance stop you from asking to try new things. (BTW, PRC also has a funding department which helps guide you or your SLP/school through the funding process. AWESOME COMPANY!)

  22. check around to see if there are clinics that offer trials or evaluations. For Kennedy we went to a speech clinic that did an eval and then offered trials on different types of devices ...then they can show justification to insurance in purchasing a device.

  23. I have a son with CP (stroke a day after birth) and a friend has a daughter with Rett's. We've
    made two iPad apps to help our kids.

    The first app is ACT Spell. The general idea is to enable a child to demonstrate spelling ability by choosing from a limited set of choices. More here:

    The second app is Picture Pusher. I watched my son using an iPhone and thought he would really like to fiddle around with pictures of our family on the iPad. I thought I was being tricky in getting him to work on some fine motor skills while he thought he was just playing. I'm all about tricking kids into doing their therapy "stuff"! More here:

    I'd be happy to give free download codes to Ellen's blog followers (I have about 40 codes remaining for each app). Just email me at prestonrohner (.at.) me (dot) com

  24. Thanks for this post! I was able to find a group in our area that lends out the iPad with Proloquo2Go software. We're so excited to have our son try it.

  25. I have been an SLP for 14 years and in Early Intervention (B-3) and school age. I have found that even a "low tech" device (e.g, Pic icons, or a printed language board is extremely helpful in the very early stages of language development). I think it is unreasonable for us to assume that a child is going to generalize their new communication skills outside a controlled environment right away. It takes time and a lot of practice for our kids to feel comfortable and to easily access their new language skills.

    I have a lot of experience with CAS (childhood apraxia of speech) and I always recommend using something to assist with communication. Do I always recommend an electronic device? no. But it has to be something that the child can easily access and be able to interact with a partner. After all, isn't the foundation of language building relationships with others around you (meeting needs, communicating ideas, sharing, playing, loving, creating)?

    It is key that the device be simple enough to use and have the ability to expand as they child's language increases.

    I'm excited that new and portable "tablets" are coming out soon. There will be more choices as far as size, which often becomes an issue.

    Eric SLP at Kidspace Therapies, SF

  26. jack my 3 year old son uses PECS. he has a severe speech delay.

  27. This was such a helpful post. Due to Charlie's CP and PVL, she has a significant speech delay (it's debated whether it is apraxia or dysarthria). Her poor motor skills has made sign language challenging. Recently, her new speech therapist has recommended PECS. Thanks so much for this post.


Thanks for sharing!

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