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Three Goals

All threeBy Cathy Jameson

Last Monday, I was able to talk to someone on Ronan’s team about a few things, including getting a conversation started about guardianship.  That isn’t her area of expertise, but the nurse was able to offer some useful advice that I will look into.  This is the same nurse who’d asked me what medical goals I had for Ronan when I met her in 2018. Back then, my goals were to stop the seizures and to help Ronan regain speech.  Since the seizures have continued, albeit, less in frequency thankfully, and since speech has yet to return, I kept those two goals current for 2020.  I didn’t ask if I could add another goal when the nurse came to update Ronan’s file, but I added one more anyway:  to help Ronan communicate more.  

Ronan can communicate, which is a huge blessing, and does so through a variety of ways.  As a non-verbal preschooler, he figured out that using sign language got him what he wanted.  As he aged, we discovered that Ronan could read, so we filled our house with print-rich items—flashcards, large-print picture dictionaries, and post-it notes were plastered throughout our home.  We labeled every single thing we could label.  Doing that helped.  Ronan read everything eagerly.  Then he began to write.   He also started to type.   He can and still does all of that.  So why make a communication goal?  

Because I want to know more.  

Ronan is a simple kid.  Simple things make him really happy.  He can tell us that he’s happy with a smile, with a laugh, or by typing out h-a-p-p-y.  But sometimes, he gets sad.  He doesn’t tell us why he gets sad though.  And he can’t share why something is bothering him either.  We can usually deduce that something set him off, but if we don’t figure out what did, negative behaviors have the chance of creeping in.  That can make life more complicated. 

One negative behavior, if not diffused, can lead to more negative behaviors.  

Not wanting those to happen, my goal this year is to help Ronan communicate more...and to communicate better.  He does such a good job already, so I’d like to add new opportunities.  I haven’t yet figured out how to do that, but I’m determined to read and learn some strategies.  I am most curious to know what other kids like Ronan have done to be able to answer the WHY questions he doesn’t answer:

Me:

I can see that you’re sad.  Can you tell me what made you sad, buddy?  

Ronan:

(types) Sad.

Me: 

This is your favorite game. Why don’t you want to play it today?  

Ronan:

(signs) All done.

Me:

It’s almost time to go to therapy.  Why are you having a hard time getting ready?   

Ronan:

(types) No.  No.  No.  Home.

I don’t have any formal training in speech/language development, but I’m excited to what skills are needed to be able to answer ‘the next level’ questions I really hope Ronan will one day answer.  Our typical conversations, like above, are so simple:

Me: 

Are you happy?

Ronan: 

(signs) Yes.  (types) Happy you be.

Me:

I’m happy, too!  Can you tell me what makes you happy?

Ronan:

(signs) Yes.  (types) Happy. 

--

Me:

You look a little tired today.

Ronan:

(types) Tired.

Me:

Why are you tired?

Ronan

(types): Tired. Yes.

--

While eating breakfast one morning, I mentioned some family members out loud.  Curious to see what Ronan might say about them, I started these sentence on the notes section of his iPad.  Without any more prompting and without assisting with any spelling, Ronan filled in what he thought about “My sisters… My brother… My Aunt… My Daddy...”

Ronan types

Clearly he thinks some people in his life are just the best! 

Some of those responses were more complex than ever before and absolutely intrigued me.  Seeing them melted my heart and have had me wanting to know more.  He hasn’t written that much in a while, which is why I wanted to make a communication goal for him, and for me, this year.  Imagine if I could peel the layers and find out why Ronan feels something.  Imagine if he could tell me what he’s thinking about beyond his regular requests (which are usually requests for food and entertainment).  Imagine if I could ask him to tell me something he remembers from the past!  He’s indicated through behaviors and facial expressions that he recalls something when he hears us talking about a certain event, but he’s never signed or typed anything like, “Hey, Mom, I remember that day!  It was when I...”

If I can help Ronan help me know what to ask him – or how to ask him – I think that I could fulfill that third goal of mine.  It would be such an opportunity, including for Ronan’s helpful and fascinating siblings who pray nightly for Ronan to be able to talk and to communicate better.  They know that good communication is important and that it helps all sorts of people in all sorts of situations.  It’s a wish for all of us to know more of what Ronan’s thinking about.  Maybe this will be the year that we can find that out.

Cathy Jameson is a Contributing Editor for Age of Autism. 

 

Comments

Irena

Cathy - my son is autistic, but he is also deaf. As a result of vaccine injury in his second year of life. He was not born deaf (or autistic, like yours).
Still - he is oral. It was probably a blessing in disguise that he was also deaf. I insisted on keeping him oral. There were several things that restored hi speech at 5 - 1/2 yo, but two stand out: HANDLE therapy and Auditory-Verbal Therapy.
The first one - you can probably read about it in the book by Judith Bluestone, PhD, who is also autistic.
I am also trying to convince our AVT to write an article for AoA describing the method she uses to teach non-verbal autistic children to listen and speak. My son is not the only one with autism and deafness that she taught to become verbal. I think she is not teaching mostly autistic kids.
You have already used the sign language - communication modality for the deaf.
Maybe other avenues of teaching the deaf and hard of hearing could be useful for our kids who are non-verbal?
My son is at Community College now, and he is doing pretty well, considering.
Best of luck to you, Cathy, to Ronan and to your family!

Will

I am wondering did Mr Jameson every think about teacher her son sign language or PECS? Did Mrs Jameson think about the Ketogenic diet to help with seizures. These therapies can really help kids with "autism" but you must see a neurologist and a developmental pediatrician for approval and advice first. It seems she is using a communication technique with her son similar to Facilitated Communication which has been debunked by experts after a recent false abuse scandal covered on Dateline a few years ago, I still hope this mother the best.

MamaBear

Cathy, you are the ever-optimist, seeing the glass not only half full, but believing it will be given to you & Ronan in good measure, pressed down and overflowing. You truly believe "For with what measure you measure it will be measured to you." (Luke 6:38)
Go with God!

Gayle

Cathy-I am very impressed by how well Ronan types his thoughts and feelings to your questions. He is very intelligent and there is much that he has to tell you through his typing and one day, all of a sudden, he will surprise you by verbalizing what he is thinking. My adult son verbalizes so much more now too and we are hoping, like you, for his verbal communication to continue to get better and better with time and we pray and hope for our son and your son that this will happen in the near future. Good luck to you and God Bless.

Bob Moffit

"It’s a wish for all of us to know more of what Ronan’s thinking about. Maybe this will be the year that we can find that out."

Your wishes for Ronan are exactly the same as our wishes for our 20 year old non-verbal young man … as Jesse Jackson was famous for saying … ALWAYS KEEP HOPE ALIVE.

I firmly believe in Del Bigtree's pronouncement that WE ARE WINNING … on SCIENCE and DETERMINATION of our community … which is GROWING BY LEAPS AND BOUNDS … as opposed to THEIR AGENDA … which is losing confidence at a rapid pace.

Remember the Berlin Wall collapse … happened overnight … no advance warning by anyone .. in the darkness thousands of East Berliner's descended on the wall ,, and began tearing it down … brick by brick until the wall disappeared into the dark pages of history.

2020 portends to be the year when the entire fabrication of vaccine mythology collapses … revealing itself to be the single greatest catastrophy of modern medicine … effecting generations yet to come as we have been MADE DEPENDENT ON MAN MADE VACCINES TO COMBAT DISEASES THOSE VERY SAME VACCINES MADE WORSE THAN WHAT WAS INTENDED BY GOD.

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