Everybody Deserves A Voice

  I keep seeing posts on Facebook and in blogs discussing nonverbal children that appear to have minimal to no way to communicate. And I have also heard people asking for recommendations for communication apps. So I want to share Ashley's story, or at least the communication part. Ashley developed typically the first 2 years of her life. Her language was a little delayed due to all the ear infections and problems, but she was definitely learning language. Then at age 2 she started regressing, and today she is essentially nonverbal. She still says words here and there, but rarely for communication purposes and she cannot produce any words upon command. For awhile we just hoped it would come back. She was able to get her point across when she needed to eat or drink usually, so we did nothing. Then we tried PECS and sign language. She didn't have the fine motor skills to use sign language very effectively, and most people do not understand it. We had somewhat of an effective PECS system, though Ashley did not use it the way it is supposed to be implemented. However, then she ended up with so many picture cards that it was very difficult to keep track of them. One speech therapist tried some low tech devices, like "Go talkers", but Ashley didn't take to them either. Finally, we had a speech therapist recommend a high tech computerized device. Nobody had ever mentioned them before, but it turned out to be the perfect fit for Ashley. My single largest autism regret is that we did not get it sooner. Here are the usual arguments I hear against AAC devices: 1. "I want to give my child time, he may start talking on his own." Research shows that using a device will not hinder your child's ability to speak. It will actual help them learn to talk. The motor planning the child uses to work the device can help them to develop the motor planning they need to speak. 2. "My child is too low functioning to use a device." Every child not only has the ability, but also the right to learn. That child may have to work harder, as will the teachers and the parents. But regardless of the function level, every person can learn to some extent. If the child is not learning, I would suggest looking at the school, teacher, or material, not the child. A low functioning child may do better with a high functioning device because low tech devices tend to make language inconsistent and random (word placement changing), thus making it harder to learn. The device we use from the Prentke Romich Company can be simplified to the point of only showing one button, or made advance enough for a highly educated person to rely on it completely to communicate. The company utilizes a language called Unity that makes speech, and thus their devices consistent and easy to learn. I have had many people who thought Ashley was not high functioning enough to learn, and she continues to prove those people wrong every day. Please do not give up on your child just because professionals want to define their intellectual abilities. Just think how many very intelligent people were at one point thought to be slow to learn. 3. "I don't know if I can get my child to use a device." Trust me, if it is motivating and they are able to communicate they will use it. They may only use it to convey their basic needs, but that is still better than no communication. My daughter does not like computers for any purpose, but she has learned to use her talker to get her needs met. I cannot even imagine how frustrated she would be at this point without it. 4. "I cannot afford to buy a device for my child." Often times insurance covers the cost, if not you can have fundraisers. Now there are many IPAD apps that are very similar to AAC devices. We recently purchased the LAMP Words for Life App which is made by the company that sells Ashley's talker. The app was $300, but I have programmed it to be almost identical to her talker. That may still seem costly, but compared to her device that cost thousands it is very reasonable. The bottom line is if you need a car, appliance, or something for your home, you will find the money to get it. Your child needs this, find the money. 5. "I'm afraid my child will damage or break it." Your child might, and that is why you have insurance and/or a warranty. Ashley has cracked her screen 5 times. The company has fixed it. We have learned to teach her to be more careful, or to not leave it in her care under certain circumstances (meltdowns, when she is alone in her room, etc.). Sometimes you have to take a risk to see amazing results. If your child is nonverbal, please give them a chance to be able to communicate in some way. Or if you know somebody who has a nonverbal child share this with them. Although I did lots of research on every part of autism, I didn't know much about communication devices, until the SLP mentioned it. I promise it will make their life and your life easier, and so much more rewarding. If you have any questions about how to go about getting a device or an app, contact me. I would be happy to lead you in the right direction. And this is just a pet peeve of mine to leave a child without the ability to communicate, I do not get any financial gain or other compensation for advocating for devices. I just know how much it has helped my severe, nonverbal daughter, and every person deserves that opportunity. originally posted May 2013