I feel like skipping tonight! And it's not just the spring weather in St. Louis. Nathaniel participated in a two hour augmented communication study at St. Louis Children's Hospital today and it was AMAZING!
Let me back up and give some necessary info.
We know Nathaniel will be non-verbal for a number of years at least. His trachea abnormality prevents him from passing air over his vocal chords. As a side note, yes, that means Nathaniel does not make an audible cry. He cries like all babies, but the only sound is an increased respiratory rate. Everyone knows he needs a different way to communicate. The go to option of course is speech therapy.
Anyone who doubted my post on my God-given nature of being assertive needs to talk to Nathaniel's speech therapists. Talk to all three of them. My son has had three speech therapists in seven months. In my defense we lost one because she received a promotion and was no longer seeing clients. The other two? They did not offer what I felt Nathaniel needed. I kept advocating.
Back before there were videos and apps and Baby Einstein tutorials, I taught my older children baby sign language. I was walking in a teacher's store one day and saw a book about sign language for day care providers for $3 and knew I needed it. Andrew, Peter and Ben were all under three years old. Nothing more needs said on why I needed a communication solution, right? By the way - I paid $3 for my copy, not $8. I'm old.
So naturally I assumed baby sign language would be communication option #1 for Nathaniel. What I didn't anticipate was with the growing popularity of teaching babies sign language, speech therapists developed strong opinions on what signs to teach, how to teach the signs, and when to introduce new signs. With each new speech therapist, we have been given new instructions on how to use sign language. Little of what they said made sense to me considering my previous experience with my boys, but they were the professionals. I followed their lead. Sign language has moved very slowly for Nathaniel.
Next thing we tried? Pictures. Because Nathaniel has numerous nurses and family members providing care, I labeled his toys to encourage consistency when talking to Nathaniel. I started making labeled photo cards of his toys as an aid for caregivers, not as a tool for his use.
Nathaniel's (then) speech therapist saw the cards and based Nathaniel's entire therapy sessions on using them. She arranged for us to borrow a simple taker from a lending program. Although oriented the wrong direction, the cards I made fit under the clear plastic covers. The device allowed us to record the name of the toy so that when the picture was pressed, Nathaniel heard my voice say, "Stacker" or "House." The goal: Nathaniel would indicate a preferred toy. The method: We placed the talker in front of him. He presses one button, and we give him the toy that he selected. This was done with great fanfare - making the toy appear suddenly from behind a back or out sight.
Nathaniel did not cooperate. At fifteen months old, he played with whatever was in front of him. Which was the talker. He planted both palms firmly on both buttons and listened to Mommy's voice have a sound war. "House." "Stacker." "House." "House." Stacker."
When the therapist did not get the desired result after a few weeks, she advised removing a card and offer Nathaniel only one choice. "Do you want your Stacker?" Wait for him to push the button of the stacker photo while holding the stacker out of his reach. The empty button had no recorded voice output so logically that button wouldn't be chosen. Unless you are fifteen months old and just happen to like pushing buttons for the rewarding sound of plastic clicking against plastic.
I felt a growing sense of frustration with the path we were traveling. Nathaniel has no diagnosis that limits cognitive development. He is delayed hitting milestones, but I have no reason to believe he won't learn in a normal trajectory. My course work for my Master's in English told me this wasn't normal speech development for a baby. Babies don't start talking with nouns and selecting between one toy and nothing, but rather they start talking using language that exhibits control and power. "NO!" "MINE!" "UH-OH!" "GO!" "MORE."
The result of us limiting the field to one card? Nathaniel would huff and puff and get frustrated and sometimes hit the button with the photo of the stacker and sometimes hit the blank button on top and sometimes turn the talker upside down and play with the bottom instead. He learned quickly that Mommy did something amazing with the red button on the bottom and that got more attention that anything, including the speech therapist. He appeared bored.
Around this time, our family introduced option three for communication: an iPad. Nathaniel's older siblings pooled their money and bought him an iPad as an adoption gift. They are awesome. And they are smart. They understood Nathaniel is going to need assistance to talk. They believe technology is here to stay. A friend offered a generous gift that provided toddler proof case, and we offered Nathaniel the iPad. He mastered his first baby app in a couple sessions. With an isolated index finger point on both hands. When I mentioned this to the speech therapist it was ignored. She explained that until Nathaniel had success with simpler tools, there was no need to consider something more dynamic.
I firmly believe technology is going to be part of our long term answer. Why not offer it now in some form?
I walked into today's augmented communication study with lots of questions. And I walked out not only with an understanding on how to use sign, pictures, and the iPad all at once, but a baby who demonstrated using his voice in play.
Our Plan:
Tomorrow we will start utilizing an app called Verbal Victor to offer the words Nathaniel, or any fifteen month old, wants to say. While still offering Nathaniel a field of just two choices, the choice are words of command and power.
Talking board #1 - Blocks
Each picture offers a pre-recorded word when touched. Picture on the left has the word "more" recorded. When he touches this button, I will offer him more blocks and model building a tower. Picture on the right has the word "Uh-oh!" recorded. When he touches this button, we will knock the blocks over.
This board is saved and available with a swipe of the screen so we can move quickly to blocks from some other toy. This is a huge improvement over manually removing pictures and recording new words with every toy. Our previous speech therapist had advised that I limit the number of toys we play with so that Nathaniel would learn the names on the cards assuming that limited field and labeling practice would help him select his toy of preference. Today I was advised to make talking boards on the iPad for every toy we play with and mix up his toys hourly. I can't tell you how thankful I was to hear that. Boredom had set in quickly for both of us playing with just a few toys while waiting for him to learn nouns.
Talking board #2 - Noah's Ark
Picture on the left is "more." I will keep the animals and offer them to him one at the time as he learns what "more" means and learns to use it. Picture on the right is "go." We will make the boat zoom around the carpet when he selects this button. I will model a lot. I will use sign language for "more" and "go" alongside the app and the play so we are giving him lots of examples and methods of how to express his wants.
I watched the augmented communication specialist do the above type play with Nathaniel today and within a couple minutes he was directing the play session. He was engaged and smiling. It was amazing.
We have a LONG way to go. And I know there will be frustrations ahead. But we have a starting place. A way to work on language tomorrow at his current skill level. Nathaniel is getting a voice.
