Communication is belonging.
Every post I write on communication ultimately exists to encourage and deepen relationships.
When we learned our son would never voice due to his airway anatomy, our explorations naturally led to Augmentative and Alternative Communication (AAC), access to systems and tools, language modeling, core vocabulary, parent coaching, communication within health systems, and the importance of autonomy.
In our parent led approach to intervention, communication has not been something we waited for, it is something we provided access to.
Communication transforms families. Communication changes education.
For our non-speaking son, AAC was not seen as a replacement for a lacking ability, but it was the path to revealing ability.
I believe language acquisition through AAC is successful when centered in relationships, immersion, and participation in everyday life.
Read more about communication in our home with a child dependent on AAC.
We started our 2019-2020 school year last week. It’s an odd schedule, but starting in July works for our family. In addition to some bigger calendar reasons to start school so early, there’s the weather and living with a trach. The heat and humidity outdoors prevented Nathaniel from being outside more than ten minutes at least one day last week. We might as well use these inside days for learning. l know one thing after a week of school. This year feels drastically different from our previous year.
Rich and I are ETC trained. In the foster and adoption world that means we’ve taken extra classes beyond what is required for state licensure. Specifically, we’ve taken classes that focus on helping children with adverse childhood experiences, or “children from hard places” as the class creators often refer to them. The ETC training provided a window to understand the consequences medical trauma and loss of family brings in Nathaniel’s life.
I mentioned in my last blog post that I wanted to be honest about some changes I am making after hearing Drs. Karen Erickson and David Koppenhaver’s teaching at the workshop: Comprehensive Literacy Instruction for Students with Significant Disabilities and Complex Communication Needs. Before I jump into another week, I do want to mention modifications that I am implementing immediately. If you have followed our journey and emulated any of my practices, I want to be up front about what we are going to do differently now.
October is Augmentative Alternative (AAC) Awareness month. It is also the month annually that I have to resubscribe to the website building program I use to write and host this blog. The overlap strikes me as appropriate. My blog has slowly migrated into a site that focuses on Nathaniel and his need for communication; it is meaningful that I yearly recommit to sharing that journey during AAC awareness month.
This week the augmentative alternative communication (AAC) activities in our homeschool focused on the words DAY, SORRY, TOGETHER, JOB. I selected these from the PrAACtical AAC August core words list one. This was a bit harder set of words for Nathaniel and I. All were on a second screen of his app, Speak for Yourself. I was still needing to use the app's search feature to find the words on Wednesday. Thank goodness we only have to navigate two screens to find each word.
We are like every other AAC family.
Despite all the blog posts I've written this month about providing an AAC immersion educational setting for kindergarten at home for our son, we struggle daily. Sometimes we go long stretches of the day without modeling language on Nathaniel's device. There are times we have to search for the device to advert a communication frustration meltdown. Sometimes we leave the device in the car. Under the bed. In the other room. Sometimes we are too tired, too hurried, to doubtful that this will really work.
Like other AAC families, we need constant encouragement to keep on keeping on.
We need simple ideas of incorporating language into our lives that require little set up, little clean up, and no expense.
This week the augmentative alternative communication (AAC) activities in our homeschool focused on the words SAME, READY, IS, WITH. I selected these from the PrACCtical AAC's list of core words for July. My goal is do one fifteen to twenty minute activity per day that allows me to model the words and motivate Nathaniel to use his device and learn new language skills. I am currently trying to model three to five word utterances. In my examples below, I model all the words except those in parentheses. I have put this week's core words in all capitals to draw attention to them. Simpler modeling option would be to only model the targeted core word.
AAC
View the entire AAC archive here.
Language Development
Nathaniel and I left his Cincinnati Children’s Hospital check up last May with an interesting recommendation from his ENT: look beyond the pediatric community for information and support. I had arrived with questions about Nathaniel’s options for voicing. They shared of another patient with a laryngotracheal separation who learned to use esphageal speech. They also expressed a great deal of hope that given the right support, Nathaniel had a good chance of voicing.
A few weeks ago, my nieces visited our home for their annual week of "Camp Rankin." We meet their family at the same park, halfway between our homes, each year to pick up and drop off the girls. Visiting a playground only once a year provides amazing insight into the changes in Nathaniel's physical abilities. In 2015, he kept his feet on solid ground. Walking on the uneven park surface carrying his tube feed in a backpack was challenging enough. In 2016, he was comfortable walking up a ramp to the lowest play area. His aunt and cousin were watchful spotters to his emerging climbing skills in 2017. This year it was hard for any of us to keep up.
Nathaniel pinched play dough bits off the ball I held out to him. He poked each piece into the Fun Factory press. Diligently and silently, he worked at the task. Once the press was full, he pushed down on the lever. He watched the play dough ooze through the three holes moving blue snakes across the table. For the twenty minutes that he worked, I modeled language on his communication device.
Two years ago today we gave Nathaniel an iPad mini with an augmented communication app. He was twenty months old. There was much we did not know at the time. We knew very little about augmented communication or Nathaniel's long term communication needs. We did not know about key guards or child friendly cases or stands or modular tubing to hold the device at an easy access point. In some ways this might have worked in our benefit. In all our not knowing, we did not know how unusual it was to give a twenty-month old a high-tech, voice output device. We wanted to give our son access to words. Lots of words. All the words he would need to be fully twenty months old
I realized something new in our quarterly AAC consultation earlier this month. We were discussing Nathaniel's ownership of his device and the need for him to have it with him at all times. I've been honest with the team and on my blog that I struggle with this idea. He is three, little for his size, and his device is a full size iPad. It is cumbersome even in the lightest case. I know he needs his words available. I dislike putting the responsibility on him to carry them or wear them at all times.
I brought up messy play. "Nathaniel shouldn't have to give up messy play because he is wearing his words..." I said. We use our water table daily three seasons of the year. On warm summer days, it is my son's "afternoon at the pool" experience. His words and device are exchanged for water, sand, shaving cream, cooked and dyed spaghetti noodles, mud, and rocks.
Nathaniel is taking a college class! Well, not really. Nathaniel is a college class. He has been accepted into a preschool level Developmental Language Group (DLG) at a local university. This summer he attends for two hours two mornings a week. The program is offered through a hands-on clinic where students enrolled in a Masters of Science in Speech-Language Pathology program work with patients under the supervision of university faculty members. For the summer session, three clinicians and an instructor are working with six children. Nathaniel is the only AAC user. He is learning to navigate play and preschool programing alongside peers capable of speaking.
POOP
PEE
POTTY
UH OH!
I NEED TO GO POTTY!
We started potty training a few weeks ago. Day one my focus was just on the task. Running to the potty, resetting the timer, running to the potty again fifteen minutes later. I signed TOILET to represent this process and I suspect this will be Nathaniel's first way to communicate the need. But I quickly realized we need potty language on the talker. Speak for Yourself (SFY), the speech generating app that Nathaniel uses, had TOILET pre-programmed. That will be helpful in years to come, so I made the word available. We may use it from time to time in modeling. But TOILET is not age appropriate language for all the stuff little ones learn about through potty training.
At our last augmented communication team session, one of the therapists asked me how Nathaniel does with books. "Oh," I thought to myself, "we're doing great here. They will be so impressed!" Out loud I said, "Really well! We read ten to fifteen books a day. We get books from the library. We have set times through out the day when we read. And we use the talker while reading too!" They asked for further explanation on my last point.
I have read to Nathaniel since his first day home. Shared moments of reading between parent and child is foundational to my understanding of child rearing. My mother read to me. My Aunt Beccy kept stacks of books in her car for her children and other young riders. My mother's cousin was an elementary school teacher and gave me most of her classroom library when she retired. I was nineteen. I had children's books before I had children. Through our years of homeschooling, reading books aloud has been a pivotal aspect of our curriculum and our family's day.
Last May our daughter suggested that I put together an list or index for blog posts about Nathaniel. When she tells people that she has seven brothers, that the youngest is three years old and the oldest is thirty-three years old, she gets a lot of questions. She likes to send the curious to my blog for information about Nathaniel.
"But where should they start to read, Mom? And how do they find specific posts?"
I have been working on this list since that conversation. The process of compiling and specifically having it completed today, the second anniversary of Nathaniel's adoption, has been a special gift to myself. It was good to reflect on where we have been, what life has been like for Nathaniel and our family, and how God has been faithful through it all. After spending hours rereading these old posts I must add my AMEN to Jason Johnson's words tucked in a recent blog post, "foster care and adoption are not just the process by which we may change a child’s life but also the means through which God will radically transform ours."
Three years ago tonight another woman held Nathaniel warm and secure in her body sheltered from the encroaching world. I don't know when her labor pains started or who drove her to the hospital. I don't know how many needle sticks it took to start her IV or what type of pain reliever she had. I do know that three years ago tomorrow morning, the doctors delivered a baby boy from her womb and she heard no cry.
Last week, my father asked me how I know if Nathaniel wants to add a new word to his talker. Isn't that just like a grandparent - challenging the middle generation on behalf of the younger - I love it!
Thankfully, I had a recent example of Nathaniel and I negotiating the addition of a new word to share with him. Nathaniel became infatuated with the movie Frozen this month. Despite our encouragement that he let it go, he hasn't. His usual show requests are Curious George, Daniel Tiger, or Cars Movie - all titles he has on his talker. Rather than using his talker to request his normal shows, he repeatedly brought me the DVD case for Frozen.
It has been awhile since I have compiled thoughts on Nathaniel's communication skills and use of augmented communication. We are headed to St. Louis Children's Hospital today to check in with the Aug-Comm team; I am excited to share Nathaniel's progress with them and thought I would use my preparation for the meeting to pull together a blog post on communication.
We spent last week with my extended family. My brothers and I are scattered around the United States now, but every year we meet in our home town, Lakeside, Ohio.
View the entire language archive here.
