Augmented Communication - Part 5: MOMMY and 216 Other Words
Ben, Nathaniel and I went to Lowe's this week. Nathaniel had his talker in the cart and when the cashier started speaking to him, I reached over and used the talker to say HI on his behalf. It is the easiest way to let someone know he is not going to respond verbally. Most often, hearing the talker catches people off guard and I can quickly sense the individual's familiarity and comfort with special needs children. The cashier came alive when she heard the device. She had questions. By the end of our transaction, she had shared that her own son has Down's Syndrome and was given a Speech Generating Device (SGD). He does not use it because he was teased and told it was for babies. She wanted more information. We wrote down the name of the app, name of my website, and the name of Nathaniel's new Facebook page.
The interaction reminded me of the good reasons to share my life, our journey as a married couple and family, and Nathaniel's story. It can benefit others. If another child's voice in the world becomes stronger, or another parent is encouraged to advocate for their child, or a husband and wife are reminded to love, or another Jesus believer is challenged to walk faithfully after their Savior, then it is a good thing to live out loud through blogging. I was reminded this weekend that everything I share publicly about Nathaniel is without his consent. Unlike my older children, who I do ask permission to write about and post photos of, Nathaniel is too little to give approval yet. I pray I am sensitive to the Holy Spirit as I write about him.
The interaction with the cashier also reminded me that it has been a long time since I wrote about augmented communication on the blog. On August 5th, it will be one year since I put the app, Speak for Yourself, in front of Nathaniel. I started with only a few words available to him and taught the meaning through daily walks. (There are two videos of those first lessons on You Tube. The first one is about two minutes long. A second about a minute long.) Nathaniel now has two hundred and seventeen words available to him on his talker and that we use daily for modeling.
I did a quick recheck on the MacArthur Bates Inventory this evening. He has increased in both receptive and expressive word use in the last six months. In many categories, his receptive understanding includes all the words on the test; his scores for receptive language will probably stay relatively consistent as I retest. Additionally there are hundreds of words, like GUITAR, HAMMER, COMPUTER, and iPHONE that he also understands that are not on the test. Expressively, Nathaniel is consistently using about thirty different signs and about thirty-five words on his talker. There is some small overlap. He says MORE with both a sign and on the talker, whichever is easier at any given moment.
Aside from simply counting words and comparing the results to a previous count, Nathaniel's speech therapist and I measure his language growth in two additional ways. On the Rossetti Infant-Toddler Language Scale, he scores almost at age level for Interaction, Pragmatics, Gesture, Play and Language Comprehension. He is thirty-two months old and scored around twenty-one months in age for Language Expression. The test is comparing my completely nonverbal child with the average speaking children his same age. At some level it seems like comparing apples and oranges and completely unfair to him. That is where our responsibility comes in - finding ways to help a nonverbal child keep up with verbal peers. Grouping words together into two and three word phrases is common around age two for speaking children; it is an emerging skill for Nathaniel. Referring to self by name, using pronouns, and adding endings like ING to verbs or S to nouns are skills that usually develop in the third year of life; they are on our short list of language to model for Nathaniel on his talker.
A second evaluation, Augmentative & Alternative Communication Profile, measures things like Nathaniel's ability to physically use his device, his willingness to seek it out, and my understanding of the system and settings as his primary communication partner. We do not administer any assessment with a heavy emphasis on Nathaniel's actual standing or placement. Rather, looking at the standards periodically reminds his speech therapist and me where he (and we) have been and where we want to go. They remind us of what is normal at each age level and help us plan Nathaniel's path through language exposure and opportunities. For example, tonight I said MOMMY ALL DONE READING on Nathaniel's device after we finished his bedtime stories. Six months ago, I would have just modeled ALL DONE. The change is because I frequently review the language stages for two and three year old children. I model on the talker one step ahead of the skills I see Nathaniel demonstrating.
There is a lot of joy in listening to Nathaniel talk whether using his talker or with sign language. My preference would be that he use the talker more often than signing. In many ways it is easier on the communication partner. Just last night I heard him say MOMMY in sign for the first time. Usually he says it when I am absent, as if he asking for me or questioning when I might return. It was a beautiful thing to hear him call me with his hands. It takes work to hear him call me with his hands. I have to be looking at him. I have to be mentally engaged. I have to be discerning if the movement is just a brush of the hand mindlessly against the face or an effort at communicating. I can usually tell by his eyes. Whether our tool is the talker or hands, Nathaniel's eyes carry his message and let me know if I understood him correctly.