“MOM THANK YOU FOR HELPING ME LIVE MY LIFE NOW”

My son has been learning to spell to communicate for two and a half years and he is still not fluent. But even in the very first weeks, he showed us enough so that I knew he was “in there” and this dramatically affected his life. I’d like to share how using the boards is helping Sam “live his life” even before total fluency.
Samuel is seventeen and for most of his life experts believed he was intellectually disabled in addition to having autism and cerebral palsy. I was not much different. I always did everything I could to help his body be healthy so that he would eventually learn to talk, but I had no idea what wonderful surprises were in store.

In April 2017, he started learning to spell to communicate from Dawnmarie Gaivin and it quickly became obvious that he was extremely intelligent and just like any other teenager inside. For example, he would do subtraction problems in his head or spell words like MASSACHUSETTS on the first try. As soon as this dawned on me, I enrolled him in seminary (weekday religion classes for teens) and started taking him to all age-appropriate church activites. This included proms, a pioneer trek, surf camp, church dances, youth conferences, and starring in a talent show!

Just a few months into lessons, when he couldn’t spell anything openly yet, I really wanted to find out what he wanted to be for Halloween. He was fifteen and this was the first time in his life he’d get to choose. I polled my friends on what categories of costumes a boy his age might like to wear, including Star Wars and Harry Potter. Dawnmarie set up boards with only two letters on them to let Sam choose the theme by the process of elimination. He chose Star Wars. To narrow that down for the next lesson, I went online to grab photos and short descriptions of eight of the main characters. Dawnmarie used that info as a lesson and then used the same process of elimination to narrow down the choices. This climaxed in a duel between Luke Skywalker and Darth Vader! I was absolutely sure that Sam would want to be Luke, but he chose Darth! What another exciting clue into his personality.

I shared these developments on social media and in person with everyone I saw, and as a result more people at church and his therapists started talking to him like any other kid his age. They told me that because of Sam, they were now talking to all of their clients like they were “in there”!
We discovered many things along the way to help Sam’s body be most steady and able to spell. For example, he has a hard time pointing his index finger independently, so I invented a “spelling sock” which is a sock with a hole in it that he wears on his pointing hand. While this could be controversial(!) we also discovered that he could get his arm moving much more easily if he got a bite of homemade gluten-free dairy-free sugar-free apple pie (homemade!) after every few words. (My adult son calls this “Pie-bery.)

Eventually Dawnmarie was able to introduce the 26 board and Sam was absolutely brilliant at letting us know how smart he was even when he could only spell one word openly. For example, in a lesson about financial planning when Dawnmarie asked, “What does Sam want to save money for?” and he spelled COLLEGE, I almost fell off my chair. Even more exciting was when he revealed his wit and teen-speak:
How did Lisa (his seminary teacher and first communication partner after Dawnmarie) do on her first day as CP?
KILLER.
In our church, members of the congregation ages twelve and up give the sermons. About a year and a half after Sam started S2C, a church leader asked if Sam would give a talk in church! He was not able to write an entire talk or even a sentence but Lisa wrote a talk about his spelling journey and how he shows how he feels about the scriptures by his body language during their seminary lessons. After she had written the talk, Dawnmarie used it as a lesson and inserted a couple of open questions at the end.
What is your favorite trait of the prophet Moroni?
OBEDIENCE.
Do you believe the Book of Mormon is true?
TOTALLY.
There he went again! Another unique word choice when he could have just said “yes”. Sam using that particular word spoke volumes about who he is! When the time came to deliver the talk, I created poster boards with those two words on them so Lisa could reveal them to the congregation in the way that he had said them, and it was exciting and effective. Since Sam has a hard time standing still when he’s excited, he sat on the front row with me while Lisa spoke the talk.

We continued to practice several times a week and Sam was able to answer more and more open questions on the 26 board. One of many highlights was when Sam spelled this message to me for Mother’s Day, about a year after we started lessons:

MOM THANK YOU FOR HELPING ME LIFE MY LIFE NOW.

Seeing more of Sam’s personality come out, and witnessing how much Sam enjoyed church and religious music caused me to ponder about baptism and other milestones in the church. (In our church, children under the age of eight are considered innocent and have no need for baptism, and people with severe intellectual disabilities are generally seen to fit in this category.)
I realized that if Jesus needed to be baptized, why not Sam? Soon after that, Sam started taking lessons from our full-time missionaries. The missionaries were wonderful! They talked to him just like any other person and accepted him immediately! My husband and I wanted to make sure that we did not push Sam into baptism and it couldn’t happen until he could clearly communicate that this was what he wanted for his life. So we pressed forward with practice, practice, practice to get accurate on the boards.

Sam’s decision to be baptized came with clues at first. When asked what he wanted for his seventeenth birthday, he replied THE FAITH TO INTEND TO COMPLETE A MISSION SOMETIME.
When asked how he would prepare for a mission, he spelled BAPTISM.
And when asked what we could do to help him with his head going under water, he spelled PLEASE TRY NOT TO TAKE TOO LONG ABOUT A DUNK.
While not fully fluent, he has been able to spell enough of his thoughts and feelings over the past few months to make clear that he wanted to be baptized and serve a mission. He was baptized on November 27, 2019!

Reaching the goal of baptism took thousands of hours of work and ups and downs and is a payday that feels so good and is giving us the strength to keep working towards full fluency. The open questions that Sam has been able to answer with Dawnmarie as CP that led to him being baptized are huge and critical to his life. At the same time, it’s been so important to our mother-son relationship that I’ve been able to progress as a CP without being dependent on his teacher. I’m currently really comfortable on the 3 boards but not on the 26 with open questions. However, we can still have so much fun and interaction on the 3 boards if there are just a couple of possible answers that are found on the same board. I love letting Sam show me how much he knows. We play fill-in-the blank with scriptures or hymns. I ask him all kinds of “prior knowledge” questions and he’s super smart. He can choose what he wants to eat for dinner if I use names for things that start on the same board. He was able to choose what classes he wanted to take at a church youth conference using this method.

Sam attends Sunday School with his peers and at the beginning of class the teacher asks the kids to go around the room and tell something about their week. When it’s Sam’s turn, I write something he has spelled that week on the chalkboard so kids can get to know him a little better in the same way that Sam communicated it. I find out the lesson topic ahead of time and make question cards with yes/no options on them or questions with other known answers. Then I give the cards to the teacher, and throughout the lesson she hands a card to a kid who gets to ask Sam a question. She also invites the kid to stand behind Sam to watch him spell the answer to the question. This is such an exciting way to have Sam interact with his peers, plus it’s a great way to engage these squirrelly teens.

Sam is progressing steadily and now we are getting a few original sentences every week during lessons. This recent one really melted my heart. Sam often has a neutral expression on his face that doesn’t match what he is spelling. But on this day as we walked into the lesson room he was smiling so big and Dawnmarie asked him if he had anything he wanted to say. He spelled:

MAYBE HAPPY BECAUSE I AM ABLE TO HAVE CONVERSATIONS LATELY.

Sam will be eighteen soon and I am going through the legal and emotional process of becoming his conservator since he is totally dependent on others for his physical care and he doesn’t reliably communicate yet. This would have been a much heavier burden if I didn’t know he was “in there” —fully intact, brilliant, and hilarious—and is on the path to having total say in his life. S2C has changed everything. As Sam says,

ANYTHING IS POSSIBLE.
By Mindy Chiou

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through trainingeducationadvocacy and research I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association.

Posted By on Tuesday, January 7th, 2020 in Advocacy,Education,Families,Motor,Nonspeakers,S2C,Spelling to Communicate

7 responses to ““MOM THANK YOU FOR HELPING ME LIVE MY LIFE NOW””

  1. Diana Harris says:

    You have been tremendously blessed, and deserve every bit–BOTH of you.❤❤❤

  2. Mindy says:

    Thank you so much for your kind words!

  3. Mindy says:

    Thank you so much!

  4. Yvonne says:

    What a touching, emotional, happy story! I’m Lisa’s sister-in-law and we have heard “Sam” stories through the years. She loves him and loves to talk about him and his progress. Best wishes for continuing success and discoveries about your wonderful son!

  5. Kathy says:

    Absolutely inspiring. I’m so glad You & Sam are able to develope a communication pathway. In my experience the light of Christ burns in all of us.
    The roadway to access it is challenging to most of us in different ways. Sending love as you walk this road w your son.

    • Elizabeth Vosseller says:

      So glad you enjoyed this blog as much as we do. We have found that every one moves at their own pace. The key is to find that pace and honor it.

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