See Me? See My AAC
I know it has been a long time since I posted on the blog when I can not remember my log in password. I have many topics for blog posts floating around in my head; I haven't made writing a priority this last month.
I am going to ease back into blogging. Nathaniel and I participated in a week long challenge to share photos that represent the hash tag #seemeseemyaac. The goal of the Facebook campaign was to bring awareness of alternative and augmented communication. People participated from all over the world. Pretty cool. Here are our photos and the snippets of information I shared with each photo about our AAC efforts.
What do you do while waiting for an elevator with a small child?
You probably talk to one another. Children with complex communication difficulties can do the same thing, but likely won't unless an adult models the behavior using the child's means of communication.
Modeling language using Nathaniel's tools is one of my highest priorities everywhere we go. Can I be honest? It is hard. It brings stares from strangers. It means you might miss the first elevator. It means in a public space full of people rushing to important appointments and jobs, you crouch down low, adjust the device so you both can see the screen, and start in with a comment, "I see..." It means you accept silence in response knowing that Augmentative Alternative Communication (AAC) is not learned through osmosis, but by immersion, and that these daily moments aren't meant to test the child's skill, but simply connect and demonstrate what he might say if he wanted to.
Safety Belt? Check.
"Do you want to play with Moon Sand or Play Dough?"
"Do you want to brush your teeth or take a bath first?"
"Are you mad or afraid?"
"Should we take your stroller or your bike?"
We hold out one hand when we verbally offer choice A. We hold out a second hand when we verbally offer choice B. Nathaniel associates the options with each hand and can make his selection.
This technique is the fastest two choice board possible. We are thankful Nathaniel manages it well. It is especially helpful when emotions are strong and finding the right words on his device would be difficult.
But this technique is not perfect. Sometimes he wants choice C or D or E. Sometimes we have no idea what choices to offer. Which is why we continue to work daily on immersing Nathaniel in language using his device.
AAC in our family means honoring multi modal communication.
This idea needs a second photo.
Nathaniel's doctors try very hard to communicate with him. Unfortunately due to past experiences, the medical setting and the white coat tend to produce a lot of stress for Nathaniel, even during office visits. Stress makes communication hard. I shared this two option choice technique with the Fellow early into Nathaniel's PICU stay this spring. The physician used it successfully often. The doctor demonstrated the technique in his teaching other physicians during rounds. Information about the child's communication skills and preferred methods easily fit into the neurological portion of a doctor's report. Huge thanks to the PICU Fellow at St. Louis Children's Hospital who not only did a wonderful job of communicating with Nathaniel, but also posed for a photo and gave me permission to use it someday.
Some days #seemeseemyaac looks like this - a cranky kid who refuses to carry his device. Or even walk.
We don't use the device at moments like this. My arms are full getting us from point A to point B.
But I'm still modeling. And I'm still communicating.
I'm silently saying, "This communication thing is so important to me, that I'll carry your device regardless of its usefulness to you at this moment."
This is one of the reasons I called Nathaniel's Facebook page Hold My Words. When you start AAC when a child is 19 months old and just beginning to walk, having words available at all times is the parents' responsibility. Gradually Nathaniel is stepping into ownership of his device. Until that fully happens, I will hold, carry, move, bring, lug, transfer, fetch, bear, and cling to his words.
His communication is that important to me.
We are very thankful for the little friends in Nathaniel's life who listen well when he talks. Hope your Memorial Day included some moments of listening too.
I am often asked if we use sign language with Nathaniel. We use signs. We don't use Sign Language.
Sign Language is a unique language with its own rules about syntax and morphology. Nathaniel can hear; he is learning English grammar rules by hearing us speak. We want him to speak using English syntax and morphology. Additionally since few people know Sign Language, focusing solely on Sign Language would severely limit his number of communication partners.
But without a doubt, signs and gestures are fast and helpful. So we use signs for key words to augment our spoken and device generated language. It is not uncommon for Nathaniel to say two words like "want banana" on his device and then use the sign "please." We also find using signs helpful for corporate worship times at church. Our family picks one song each month and learns (or makes up) signs for key words. This gives Nathaniel the opportunity to "sing" with motions with our church family.
Occasionally we'll see these signs from songs in daily life. Like today when we saw him say "love" in sign when he was walking around the track board at the train store talking to himself.
Rather than viewing manual signs as an alternative to using Nathaniel's high tech device, we see signs and gestures as one of his many communication tools.
I was a life guard on Lake Erie for summers through college. Each guard had a whistle, and we sent messages across the swim area with various signals of long and short blasts. We have four Eagle Scouts in our family. Whistles are on every high adventure camp packing list. Why whistles in each situation?
Whistling is a form of alternative communication.
Three blasts on a whistle is an international signal of distress or "Help Me" call.
Nathaniel can produce no sounds with his vocal cords. They have been glued and sewn closed. No audible cry, whimper, moan, shout, or yell.
But he can whistle.
Using a computer and 3D printer, Nathaniel's older brother and a friend invented a whistle that fits on the end of a tracheostomy tube.
Children with complex communication needs require multiple and layered communication tools. They need solutions for various environments. What works for communication when Nathaniel and I are sitting side by side won't work if he is stuck at the top of a tree. Today Nathaniel's whistle is a fun toy. Some day, it may save his life.
Sometimes when you see me with my AAC, you might see me dragging my device through piles of Pecan tree pollen like its a dump truck clearing a path.
Keeping it authentic, right?