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:
I can see that you’re sad. Can you tell me what made you sad, buddy?
This is your favorite game. Why don’t you want to play it today?
(signs) All done.
It’s almost time to go to therapy. Why are you having a hard time getting ready?
(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:
Are you happy?
(signs) Yes. (types) Happy you be.
I’m happy, too! Can you tell me what makes you happy?
(signs) Yes. (types) Happy.
You look a little tired today.
Why are you tired?
(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...”
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.