Hope signBy Cathy Jameson

I was asked two sets of great questions in the last week.  The first ones were from Ronan’s young sister: 

If Ronan can make sounds with his vocal chords, why can’t he talk?  He can make sounds, but why can’t he put them together? 

The second set of questions were in the comments of last week’s Sunday post from one of our long-time readers.  She asked:

How did Ronan learn to read and type?  These are complex global skills that show high intelligence.  You are a writer.  Ronan may have inherited your language skills.  Is he now able to type full descriptive narratives?  Does he ever attempt to draw pictures?  Can he read cartoons?

Such great questions!  I’ve thought about all of them every single day over the last few days.  The response I give his youngest sister, and one that I use when other children ask about him, is that Ronan experienced typical speech and development skills, and then he didn’t.  His oldest sister remembers hearing Ronan being verbal.  But the few words he had started to fade, as did other skills he’d mastered.  I didn’t give a huge scientific explanation to my daughter, even though she knows the medical history that played a role in that loss of speech.  I did share that even though Ronan struggles to tell us what he wants and needs verbally, he’s wowed us with other forms of communication.  He can read, type, sign and gesture lots of things!  That brings me to answering some of the next set of questions that Emmaphiladelphia asked.  

[I hadn’t realized how much I wrote in reply until I began to edit this post on Saturday morning.  But like I said, I spent days thinking about those great questions I was asked.  Here’s a bit of history with hopefully some helpful information for other moms and dads.] 

Ronan learned to read early, like his big sister did.  She was 3 years old, he was around 5 years old.  I remember that both Fiona and Ronan loved books.  When they were very young, I spent quite a bit of time reading aloud to them, beginning when they were newborns thanks to Jim Trelease’s The Read-Aloud Handbook.  It was one of the best tools I’d discovered as an early education teacher.  After naturally incorporating his suggestions in my classroom, I was excited to be able to also with my own children. 

My own children were drawn to print-rich items in our home environment – toddler books, children’s magazines, puzzles, flash cards.  Even though Ronan would later be enrolled full-time in a preschool that served children with special needs, he’d still see that material in the playroom and in our dining room where my typical children would be homeschooled.  

As Ronan entered elementary school, he eagerly learned how to use sign language.  I’d used sign language while teaching, not because I had students who needed me to sign to them, but because it was a neat skill I learned that I wanted to share with my students.  Later, as a young mom, I used it when Fiona was a toddler.  She picked it up very quickly and actually preferred to sign even though she had expressive verbal language skills.  When Ronan began to go silent, I began to sign with him when I spoke to him.  We knew he could hear us.  We knew he wanted to tell us something.  But he could only vocalize – not verbalize, his responses.  Besides starting to label everything in the house with index cards or flashcards with names of objects, we began to sign everything we could for Ronan.  The day he put ‘two and two together’ was an amazing day.  He signed ball after seeing a picture of a ball.  He turned and signed ball toward me to let me know that he knew what the image was.  I was floored.  I was so excited and motivated to teach him more!  Ronan was all of that, too, including on the day that Ronan signed cookie and immediately got a cookie to eat.

In the early stages, he’d learn and retain 2 – 3 signs per day. 

Then he’d learn up to 5 signs at a time. 

Before the end of kindergarten, we’d taught him 125 signs at home!  It was pretty incredible.

Something else that was incredible was realizing that Ronan taught himself to read.  I discovered that one afternoon that same year while Ronan was looking through a stack of flashcards.  I had several kinds – ones I’d made, some that I’d purchased, and some that were given to us.  The set I’d been using with Ronan to teach him signs had words and a photo.  I’d show him the photo, sign the word, and then point to the word.  That stack was of household items – a picture of a spoon with the word spoon under it, a house with a picture of a house…a book…a baby.  We had other sets of cards with sight words that only had the sight word printed on the cards, no images.  It was this stack that Ronan was sorting through one afternoon. 

I was walking from the playroom to the kitchen when I saw Ronan sitting on the floor looking at the cards.  He signed something to himself, then looked at another card and did the same thing.  

Book

Baby

Ball

I stopped and stared.  Then I shuffled the cards and asked him to sign what he saw: 

Ball

Baby

Book

Shuffling the cards, and adding a few more in that I had never introduced to him, I asked him to show me the signs.  He signed each and every word correctly.  I couldn’t believe it!  He’d taught himself with the print-only cards that I was using for his siblings’ lessons.  I recorded some great memories of that time:

– I’m watching Ronan babble to himself in sign language.  He is so smart and ‘chatty’.  I hope one day to hear his words.  He’s started doing the *whispering of noise phase I read about.  

– I’m watching Ronan ‘talk’ to his shadow.  He is using sign language and fingerspelling.  

-Ronan read seven new words to me today.  Thank God he can sign his response.  He is so fricken smart! 

[*I wish I could remember which book I read that whispering bit in!  I was reading so much back then but can’t recall which author mentioned that.]

In the evenings over the next few months, I tried to use the Teach Your Child to Read in 100 Easy Lessons book with Ronan like I’d used with Fiona.  But I could not figure out how to get Ronan to tell me what he saw on the page.  Sure, he had tons of signs at that point, but if he didn’t have a sign for a word, he could not show me he understood what was printed.  Reading was not part of Ronan’s formal school lessons or in his education plan, so we continued to teach Ronan as many signs as we could after school at home in the evenings.  We also continued to label and narrate as much as we could also. 

Where he couldn’t express to me what he was reading, Ronan was showing some fine motor control with fingerspelling.  That ability opened another chance for more communication.  A year or so later, during an evaluation for a speech output device, one of the evaluators asked if he could point. 

“Yes, he can,” I said.

“Can he point and type?” she asked.

Huh, I wondered.  

“I don’t know,” I told her.  

Up until then, I’d never asked Ronan to type anything.  I’d never thought to.  

Well, just like signing and reading opened his world, Ronan also figured out that typing can get things he wants or needs.  

From a memory from 2011 after he’d gained some typing skills:  

Typing with Ronan on a Friday night. If Ronan doesn’t spell the word right away I fingerspell or sound it out phonetically.  (I also add the spaces in between the words.)  He’s such a good hunt and peck typist, he knows where the keys are and is happy with the results–seeing the word, tracing some of the letters on the computer screen and then waiting to watch his [Thomas the Tank Engine] movie clip.  Amazing.

PLAY MOVIE YES

NEW MOVIE YES

TRAIN

I WANT MOVIE

Finding that memory made me want to look for more.  This one was from 2013, with one of his Dream Team teachers who moved mountains with us:  

Best day for Ronan all week (thank you, Lord, he so needed a good day)!  They are doing a reading assessment with him at school and want to ramp up teaching more spelling since we all know the kid can do it.  We don’t know what he’s taught himself unless we ask him, so to get some more help and up his game is awesome.  At one point during the testing, his teacher asked Ronan to type in words he knew.  He types the usual:  Baby Einstein, snack, Wii.  

So, she says, “Can you type in my words (shows him the list)?” 

Ronan types: no

Ha ha ha ha ha ha ha ha!!!!  What a stinker!

We just typed out some words together here at home.  I said them, he wrote them.  This is only a partial list because he was more interested in where his ipad was than Mommy quizzing him:

dad

me

musc (music)

sad

bed

see and learn

colors

letters

numbers

shapes

10 (I asked him to spell ten) 

Red

Mom

Ronan

Hah (happy)

mk (milk)

bowning (bowling)

wii

j (jump)

I could tell Ronan was getting tired. He was pretty much done with me at this point so I said, Are you finished?  He typed: fishd (finished)  We’ll catch up, Buddy.  Don’t you worry.  Mommy won’t quit on you.

And another story from that same year:  

Love my Ronan.  I am getting him dressed and sign his delicious breakfast menu to him:  eggs, waffle, bacon, milk and juice. 

He looks at me with that half-a-Jameson smile and signs back “cake”. 

I say, “Cake? Really?” 

He signs “yes” and repeats the sign. 

Gotta get that kid a cake.  Good thing we have a stash of GF cupcakes in the freezer for special occasions like this.  Cake for breakfast just because you are amazing, Ronan Jameson.

He really is amazing.  But some days, he’s not so happy.  While searching for those sweet stories, this one from 2015 popped up:   

Ronan was up a little earlier than usual and must have seen Daddy leave a little later than usual today.  Ronan used sign language and fingerspelling to tell me something when I was getting him changed:

Car Daddy criy.

Poor kiddo.  He was sad.  He loves that Daddy of his.

When he can’t tell me he’s sad or that something is hurting, he’ll show me another way.  

CJ July 4

These photos were from a few years ago.  On one side of that laminated page is an image of qwerty keyboard he uses to tap out words to us.  On the reverse side, the one Ronan’s pointing to, are images that we thought may help him.  Ronan had started to slow down physically when I made that page, and I wanted him to be able to tell or show us if something was achy.  That day, he’d told me his ankle hurt while we were out at an appointment.  Later that night, he showed me he was hurting again after he had a seizure. 

CJ july 4 2nd

It is not very often, but when he also opens his books to the Sad Cry page, like he did just on Friday morning, we do our very best to figure out what’s making Ronan sad.  Sometimes, just hearing his favorite music will help cheer him up.

From 2017:   

I’m sitting here having breakfast with my Rone.  He’s thumbing through a Signing Time book while I’m catching up on some emails and stuff.  I like the quiet, but today it’s too quiet.  So I ask him in sign, “Ronan, do you want to listen to some music?”

He signs back, “Yes” while scooping in another yummy spoonful of cereal.

I ask him to type in the song he wants to hear:

mozart concertp 23 andand 12 21

So close. So very close!!

Mozart’s Concerto 21 – Andante. https://www.youtube.com/watch?v=df-eLzao63I It’s his go to music.  He loves it.  I love it, too.

Ronan’s music likes vary, but he always goes back to that piece.  It’s beautiful and calming.  I don’t recall when Ronan discovered it, but I make a point of thanking Ronan for playing it when I hear him play it.  I thank him for other things – for trying to verbalize when the words still get jumbled up, for typing exactly what he wants so I can help him be successful in making requests, and for being so very patient with me.  Ronan doesn’t sign as much as he used to.  Neither do I.  When he does start to sign, I will sometimes struggle for the right word.  It doesn’t help that his fine motor skills aren’t like what they used to be either, so while I guess words and he repeats his RSL (Ronan Sign Language—which are modified signs he’s created), we look like a bumbling old couple playing a bad game of charades.  

It’s sometimes comical, but it’s also sometimes frustrating.  So we look for other ways to help each other.  He’ll open the Notes section on his iPad and type something to me, or I’ll take out my phone and open a blank email and type something for him.  

Ronan is still the hunt and peck typist as he shares complete thoughts.  But he’s still limited in his language output.  One day I’ll hope that he can share paragraph-long written conversations with us.  For now, it’s usually one sentence at a time after one prompt at a time.  The slow going doesn’t mean we hold back on expectations we have for him.  We will always hope and pray that verbal language will come back.  We will always hope and pray that being able to communicate will be easier.  We will always hope and pray that we can provide exactly what Ronan needs and when he needs it.  Something else we will always remember to do is celebrate the accomplishments he continues to achieve.  Big ones and littles ones.  Those are what get us through, even now all these years later. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

https://www.youtube.com/watch?v=n_aVFVveJNs



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