Spelling 2 Communicate!!!

 Communication!!!

Buckle up...this is going to be a long one but probably one of the most important blog posts I have ever  written and it is 12 years in the making (maybe 20 years if you consider Mark's age).  April is Autism Awareness Month and I am going to make you "aware" of one of the most debilitating symptoms of autism for Mark.  Speech and language difficulties.  Mark can say some words for things that he really wants.  For example, he can say "pizza", "cheese", "swimming", "bike ride", "egg delivery", etc...BUT, you are not going to sit down and have a conversation with him.  I rely on his body language to help me determine how he is feeling most of the time...is he content...is he getting upset...is he happy...is he sad.  AND it is more than speech troubles....It is hard to explain, but it also involves motor planning challenges.  He knows what he wants to do but he can't make his body do it.  How frustrating!  Can you imagine being trapped in a body that is not working like you want?  I have been seeking to teach Mark a better communication strategy for years!  Something that is compatible with the motor planning that he can do...

In 2011, a movie called Wretches and Jabberers came out and it was about a couple of men who learned to type for communication and set out on a global road trip to change people's minds about disability.  I wanted this for Mark...not the global road trip part...the communication part.  I even went to a conference in Syracuse, NY during the summer of 2014 to learn more about the technique.  One of the keynote speakers was Naoki Higashida (pic below).  He is nonspeaking and lives in Japan.  He typed a book called The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism.  There is even a movie made from the book and you can watch it on Netflix now! 

Typing for communication is a form of augmentation communication and it can be controversial.  I don't really have time here to go into the controversy here.  The conference was inspiring but they didn't go into a lot of the logistics of "how" to teach the typing for communication.  BUT that did not stop me, I tried to teach Mark how to type for communication by myself when he was in Middle school. We would work at it every morning before he went to school but we never had a breakthrough where he could independently type by himself.  We even went to a local speech therapist that I had heard had some training in augmented communication.  She just flat out told me that Mark would not be able to learn it.  I don't know why she thought this.  I don't think people should make blanket statements like that.  It was rough...many tears...

Then, in 2017, we got ready to buy the farm and get Mark’s egg business going, we were having issues with our other son, Joshua, and communication fell off the priority list.

In spring 2022, I got a text from a parent that has a child with autism. I used to be the child's support broker and helped their family to get services set up for him several years ago.  He reminds me a lot of Mark when Mark was younger.  Mom told me that there was a lady in town teaching spelling for communication. She knew I had tried to teach Mark to type for communication at one point.  I was intrigued by this new possibility but it was spring and I was crazy busy getting things planted on the farm...

The next month, Mark and I were at Spence, we call it the “farm store,” to buy some supplies.  After paying for our items, we walked out to the parking lot and there was a young man there waiting to speak with us.  He said he worked at the Jubilee School.  I know that this is a school for children with autism.  He said that there is a lady there teaching kids how to spell for communication.  He said her name was Cynthia.  Then, I remembered my friend's text and I pulled it up and it was the same contact info. 

Okay, okay…when a perfect stranger comes up to you and gives you this kind of information...I saw this as a sign.  I didn’t need another prompt from above…I called Cynthia immediately and got us set up to start Spelling 2 Communicate (S2C).  If you click on the link, you will be directed to a webpage with several videos explaining S2C.  There is a video labeled "Overview of Spelling to Communicate" and it is good to watch and only about 4 minutes long.  I will attempt to explain it more here...

Speech, talking with your mouth, is a fine motor skill. Getting your mouth and tongue to contort into different shapes to make different sounds is hard work that most of us take for granted.  Basically, S2C is turning a fine motor activity into a gross motor activity.  In S2C, the speller uses their whole arm and a pencil to point to letters on a board.  This is the gross motor activity.  They spell out what they want to say one letter at a time.  Let me also note that when you start S2C, you work with the alphabet on 3 different boards.  This reduces the options for the speller and helps to develop the motor control needed to point to the correct letter.  As the speller gets more practice, they can be moved to 1 board with all the letters of the alphabet on it.

Cynthia started working with Mark in June 2022. Of course, it started out a little rough. Mark had been out of school for 2 years at this point and we were not doing any type of “table” work at home. Table work is when you sit down and work on teaching a new skill.  So…it took several sessions for Mark to learn to just sit and work at a desk again. 

Each session is similar, they start with a lesson plan.  The lesson can be about almost anything...hiking, music, art, advocacy, etc.  They read the first paragraph of the lesson and certain words are spelled out.  Then, it is Mark's turn to spell out the designated spelling words from the passage.  After about 3 spelling words, he is asked a "closed" question.  A closed question is a question with only one correct answer.  It is based on the passage that was just read.  

Cynthia did all the “work” at first and we met with her once a week.  It seemed that things were going slow.  I was so excited to start working with Mark myself because then we could get in more practice time each week.  Finally, in September, she started teaching me to work with Mark at her office and then in October we started on our own at home. 

At first it went well.  Then, Mark started having some behaviors when we worked. He started attacking me and this caused a lot of anxiety for both of us.  I let Cynthia know what was going on and we re-grouped and worked through this period.  I have videotaped most all of our lessons and will be slowly putting them out on our YouTube after this blog post goes out.  Here is an example of Mark's aggression towards me at the 12 minute mark of this video.  It may be hard to watch.  I know I don't like watching it and I was there when it happened...this is Session 7...

We were able to get back on track but it was so upsetting and things were moving so slowly.  Also, I had recently finished reading a book titled Underestimated: An Autism Miracle by Jamison and J. B. Hanley.  The book is about a young man, that was a little younger than Mark, and his journey to learn S2C.  He seemed to pick it up right from the first lesson.  I was happy for this young man but it made it hard to see Mark struggling to learn this new way to communicate. 

Things slowly improved through the holidays and soon we were back on track.  In January, he was actually smiling through his lessons with Cynthia.  This was great to see because it definitely did not start this way last June!  One obstacle that we have to work through is that Mark is very “prompt” dependent.  He always waits patiently for you to direct him for what to do.  It took 2 years for me to get him to feed the chickens by himself while I went into the other coop.  At first, he would just stand there and do nothing when I left.  But slowly over time, I convinced him that it was okay to keep working while I was out of sight.  BUT typing independently is going to require him to take the initiative and spell on his own.  

Here is a video of our 42nd session...things are going much better now...

February 20...it happened.  Mark was working with Cynthia and spelled out a whole sentence of his own words!!!  This is called "open" communication.  They were working on a lesson about art and paintings.  She asked him, "What colors would you use to paint with?" and he spelled, "I would use red, orange and some roses."  If I wasn't sitting right there, I wouldn't have believed it.  We have been limping along for months with one word answers and now a whole, open sentence!!!

It is common for the individual to be more "open" with the facilitator at first.  I have not been able to get any open sentences from Mark myself but we are working on answering the questions in sentence form instead of single words.  When Mark works with Cynthia, sometimes he is very emotional, almost crying.  He is finally getting a voice and, I think, this is almost overwhelming for him.  We are still in the beginnings of this journey but I am so hopeful and want to let everyone know about this amazing technique!

I am working with a group of individuals to bring a documentary movie to our town.  It is called SPELLERS and it is about several individuals that use spelling to communicate!  It is based on the book that I mentioned earlier, Underestimated: An Autism Miracle.  Here is the trailer for the movie...

As I mentioned, this is just a group of people putting together a free showing for the public to let everyone know about S2C.  If you live near Moscow, Idaho...please feel free to come!  We may have codes to give out to people that do not live in the area so they can watch it on-demand...more info to come on that option...

There will be Continuing Education credit available for medical professionals and educators!

As mentioned on the flyer, there will be a Question and Answer Panel after the showing of the movie.  I am going to be on that panel with Cynthia and the mom that I mentioned earlier in this post...that initially told me about Cynthia and S2C last March.  

The other boy that started S2C with Cynthia is much more "open" than Mark.  A couple of days ago, Cynthia was working with him...she told him about Mark's recent open spelling.  She asked, "Is there a message you would like to give him? What do you want Mark to hear from you?"  He used his letterboard to give his reply:

"TELL HIM NOT TO GIVE UP. HIS WORLD IS ABOUT TO CHANGE AND GET SO MUCH BETTER. HE WILL LIKE BEING ABLE TO COMMUNICATE."

Everyone needs to know about S2C!  We estimate that it is going to cost close to $3000 to show this movie.  IF you would like to support this project, please make a donation to our GoFundMe.  If you do donate, please mention Mark in your comments or "words of support" on the Go Fund Me page.  

We are calling our group "Palouse Friends of Spellers".  There are 10 of us working on this movie showing.  I already got some good news this past week that the Dean of the College of Education at U of I sent out the information to everyone in the Department!  I will be putting links to all this information on the ReMARKable Farms Facebook page.  If you see the information about the movie on the FB, please share it to your personal FB page.  We appreciate any help in getting the word out!  The Kenworthy will seat 268 people and we want every seat filled!

Lastly, as I mentioned earlier, I am going to start putting out all the videos that I have recorded of me and Mark working together on our YouTube channel.  If you Subscribe to the YouTube, I think you get an email each day when the new video posts.  I am going to release one video each day.  So far, we have 65 recorded so there will be at least a couple of months of new videos each day.  The camera automatically shuts off at the 20 minute mark so that is how long they are.  They are not terribly exciting.  I don't expect people to actually sit down and watch every video.  It is just to show how this technique works and you will slowly see the progress we are making.  AND remember, we are doing our best.  I am not a professionally trained facilitator.  These are not high quality films.  Just me and Mark doing our best to learn a new skill...please, say a prayer for our journey!

Also, remember that I am not a professional writer...I am hoping this all made sense but, please, reach out if you have any questions.  I would LOVE to talk with you about S2C!!!  This is a lot of information from the past 12 years and it was challenging for me to try and put it together in a coherent way...

Have an eggcellent day!

~Denise

P.S. I do have 3 other "open" sentences that Mark has written and I will be posting them, and any new spelling he does, on the ReMARKable Farms Facebook page!