The Difficulties with Augmented Communication
Augmented communication is hard. Nothing about it is normal.
Take last Saturday morning.
Rich, Josiah and Nathaniel were outside working on Joe's bike. When I walked into the situation, Nathaniel was upset and on the verge of a tantrum. Rich explained that it was regarding a tool that Nathaniel had confiscated as his own, but Josiah needed to use periodically. The frequent transition of ownership was causing an ongoing conflict. I asked where the talker was, hoping to offer everyone another tool to work through the situation. The talker was not outside.
I found it upstairs under the couch.
1st Reason AAC is Hard: You have to have the tool available. That means within reach, in working order, and fully charged. Left in the other room, a dead battery, or a blue tooth speaker that cuts out means communication can not happen. The suction machine and airway bag where outside with Nathaniel. At a very basic level, they are more important to us and to a kid with a tracheostomy. Words are a luxury compared to breathing. Sadly, sometimes the talker doesn't make the grab-the-bags-and-go cut.
As I walked back outside with the talker, I did a quick search for something that would be appropriate for Nathaniel in this moment. I have been encouraged to add some social response phrases to his primarily individual word based system. The phrases are on a second screen under PLEASE so I looked there first. I found GIVE IT BACK. I added the phrase after a play date in June to allow Nathaniel a typical two year old's response when someone takes something he wants to keep. The phrase has not been used since the playdate. I had forgotten it was on the device.
2nd Reason AAC is Hard: As communication partners, we have to know what words are open on the device and where to find them. I am struggling to keep up since our jump from about fifty words to over two hundred words in a few months. Rich has even less time to work with Nathaniel and even more of a struggle to keep current. The process of knowing Nathaniel's talker well and using it to talk to him is called Aided Language Input. We have a family language goal of modeling twenty words an hour. Catch that important word: goal. The talker was under the couch; I am keeping it real here, folks.
When I returned to the back yard, the moment was gone. Joe was finished with the bike repair; Nathaniel had moved on to something else. I suggested we recreate the interaction so that we could offer Nathaniel an example of how it could have gone with words.
He resisted using the talker. He got up and walked away.
3rd Reason AAC is Hard: Nathaniel is young and mobile and has not yet claimed ownership of his device. One minute he wants trucks. The next he wants to dump the Duplos all over the floor. In many ways he is a normal two year old. But he also has a deep history of medical trauma. If an adult caregiver follows him from activity to activity trying to direct play and force the use of the talker, he retreats, appears threatened, and behaves in a similar way to when we do a weekly trach tube change or he gets an IV. He fears an adult forcing anything on him. Even a good thing like a voice. We have to keep the talker use inviting and fun.
Some days the hard aspects of trying to teach Nathaniel to communicate seem to outweigh any progress we are making. I can not find another first hand parent experience of what we are trying to do: offering a dynamic speech generating device to a child who has a combination of a severe trachea abnormality meaning he has never made a sound with his normalcy of being a two year old. I find articles and information directed at speech therapists, most often working with older autistic or speech delayed children in a school setting, and try to implement the ideas here at home hour after hour. One blog post I read recently encouraged tracking word use, which I do already. Data can discourage me at times, but it also keeps me focused.
Reviewing the data nightly helps me brainstorm new ways to use the talker with Nathaniel and make plans for the next day. It can help prevent situations like forgetting GIVE IT BACK was open and not using it for two months. For example, we observed some monkeys Monday evening and opened the word MONKEY on the talker. When looking at the data use yesterday, I remembered the book Hand, Hand, Fingers, Thumb. Reading is the one time of the day that Nathaniel is very content to stay put on my lap. I can easily integrate modeling on the talker with reading the story and use words, like monkey, that do not come up in daily activities. Just recently, I started using the talker as a tool for him to answer questions about the story and the pictures.
4th Reason AAC is Hard: We have to be intentional. Talker talk does not just happen. If the device is going to be used, I have to plan for it. If I do not plan, we tend to use the same words in the same way each day. In many ways, this is similar to my initial experience homeschooling. There was not much information or curriculum available for homeschool parents when I started teaching my children twenty-three years ago. Lesson preparation for the next day found me nightly immersed in my children's work, spending hours thinking and praying about what they needed, and planning how to move them to the next level in an engaging way. It takes a lot of purpose and energy to help a child learn, whether it is how to divide fractions, the reasons for the French Revolution, the periodic table or where a new word is on a talker.
Today marks one year since we bought Nathaniel the Speak for Yourself app and offered him a dynamic communication device. There have been many achievements and progress in the last year. But there is a lot of work still ahead of us. I am thankful Nathaniel and the challenges of augmented communication came to us after twenty plus years of homeschooling, thirty years of parenting and seven other children's lifetimes of knowing how important it is for Mom and Dad to get up every morning and give one hundred percent to the task. God's mercies are new every morning; I know that in a very personal way. He has given the strength and encouragement to keep on keeping on in the past; we depend on His faithfulness for the new challenges of helping Nathaniel learn to talk.
