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Challenging Autism

Autism eye testBy Cathy Jameson

Last week, Ronan had an eye appointment at rather large medical facility.  We were going to a place where multiple specialties work under one roof.  That can be a blessing – providers have access to the main medical file and can look over other doctors’ notes to review current treatment plans and progress.  If any sort of collaboration needs to be done, communication to another specialist can happen quickly.  But, being in a large facility can have its drawbacks – instead of just a few patients, there are lots more patients, nurses, doctors, and medical stuff coming and going.  With that, there’s more sensory stimulation, waiting room time, and sometimes, an increase in frustration.  Just walking into a facility like the one we were going to could be a challenge for Ronan.  Knowing the types of tests he’d be asked to do that day would be also, so I did as much as I could ahead of time hoping things would run smoothly. 

Being unfamiliar with the location we were going, the first step, literally the one Ronan would take out of the car, could be hardest.  Happily, Ronan got out and then waltzed right into the building!  Curious about where we were and about everything he was seeing, Ronan took his time walking down the very long corridors to the clinic.  He pointed to words he recognized while we were in the elevator and also signed the ones he knew the sign to.  As we walked, he smiled and began to scroll through some of his favorite signs.  He does that to tell us he’s happy.  I smiled back at Ronan. 

Rounding the corner, my expression changed.  As I expected it would be, the waiting room was packed.  Oh, boy.  This could be a long day, I thought.  I was glad that I’d brought all sorts of Ronan-happy things (snacks, his favorite books, and an iPhone to watch favorite videos).  They would help keep Ronan distracted while we waited for his name to be called. 

While sitting and waiting after we’d been checked in, I began to feel apprehensive about the new provider assigned to Ronan’s case.  I’d learned that the doctor we were seeing was not the specialist I’d agreed to take Ronan to.  This doctor only knew Ronan on paper.  In order to get a better picture of what’s going on and why we were there, I’d need to offer a full history.  I began to mentally go over everything I wanted to say and ask him the new doc. 

With as many medical issues that Ronan has, I wanted to give as much relevant information as possible and prayed that what I said, and how I said it, would be respected.  My thoughts were interrupted after just a few minutes.

“Jameson.  Ronan?” a very young doctor called out. 

Making eye contact with him, I raised my hand and turned to Ronan.  “Hey, buddy.  That’s us.”

“Follow me, please,” the doctor said.

Since the doctor we’d been assigned was young, likely inexperienced with a child like mine, and would only be able to do so much before having to refer us to the head doctor, I walked into exam room 10 steps ahead of Ronan and quietly stated, “He’s non-verbal and has sensory issues.  Speak to him.  Tell him exactly what you’re going to do and why, and that should help.” 

Without replying to me, he turned to Ronan and said, “Hey, big guy!  Can you sit right here?” Ronan responded immediately and positively and got settled in the chair.   

Taking out some files I’d brought, I said, “Ronan signs.  It’s not straight up America Sign Language.  It’s more RSL…Ronan Sign Language, but if you need me to interpret anything, let me know.”  The doctor nodded his head, said he understood, and said, “You do what works.” 

Other people might have dismissed my attempt to help, but I felt myself begin to relax.  Still skeptical since he’d yet to begin the physical part of the exam, I watched the doctor for his next move. 

“Hey, Ronan, I’m going to turn out the lights.  Can you tell me what you see?” began the doctor.  “See the letters up there on the screen.  Look over here.  No, up here.  Do you see them?  Can you tell me any of them?” 

No response. 

“Okay, how about now.  See them?” he asked again. 

Nothing. 

Ronan can read.  He can write.  He can type.  But he doesn’t do it on command to a stranger who’s all up in his face shining a bright light directly into his big, brown eyes.  I wasn’t surprised that Ronan made no movement, offered no input, and made no indication that he saw anything.  But before shining that small light again in Ronan’s eye, which I knew was coming, I said, “I’m so sorry.  I forgot Ronan’s alphabet board at home.  I can write one out really quickly and see if he’ll point to the letters he sees if you think that will help.”  The doctor did one further.  Turning the lights back on, he said, “Give me a minute…,” and left the room. 

Returning with a printed alphabet, he resumed the exam.  

Cj ronan eye 1

“Hey, Ronan, what do you see?”

Floored, I watched Ronan begin to engage with the young fellow.   He did pretty well but only offered 2 letters before losing interest.  Again, I made a minor suggestion.  “Do you have the shapes?  Our eye doctor back home uses shapes with the younger kids.  I wonder if you have those, because Ronan can sign what he sees.”

Within seconds, the shapes popped up on the screen.  Ronan successfully signed each of the images that he saw:  Cake.  Horse.  Car.  Phone.  Bird.  Phone.  House.  Hand. 

Cj ronan eye 2

Boom!  He rocked it. 

Before turning the lights back on, the doctor said, ‘Not too many kids today would know that that is a phone.”  I laughed.  Pleased, and really beginning to relax, I asked, “What’s next?” 

The young doctor described the next test.  Unfamiliar with the name, I asked for more information.  He began to tell me and also made sure to include Ronan in the conversation.  With the description, I recalled that this next test could be somewhat invasive for a kid like Ronan.  In another room, Ronan would have to wear an eye patch, rest his chin on a small ledge, keep his head completely still and push a button on a small clicker each and every time that he saw a small flash of light.  After the explanation, the doctor wondered aloud, “Could he do it?”  I said, as I’ve said to so many other providers over the years, “Well, we won’t know until we try…”  He stood up, motioned for us to follow him, and offered, “Some days, the best thing we can do is try.”  

Leading us around the corner, down a hallway and into a smaller exam room, Ronan took his seat and rested his little chin on the chin bar as if he’d been doing these sorts of eye exams for years.  The doctor and I both smiled.  Introducing Ronan to the eye tech, who had taken a moment to read through the file and knew that Ronan had some special needs, we got ready to see if he could do the visual field testing. 

CJ ronan eye 3

Even though Ronan’s attempt didn’t garner any results, the fact that he sat, kept the eye patch on as long as he did, and clicked that little clicker as many times as he could—even though none of the clicks registered correctly, was beyond thrilling.  It was a feat worth celebrating, but it wasn’t the best news I’d hear that day.  That news would come next. 

After one more hour and one more test, it was determined that Ronan wouldn’t need to come back for an entire year.  With other specialists, Ronan has follow ups every 4 – 6 months.  To know that one of his body parts is doing well and doesn’t need to be monitored for a long stretch of time was a huge relief. 

Thinking about it now, I wasn’t as polite as I could’ve been when the appointment started out.  I didn’t mean to put the doctor on the spot as quickly as I did, but years of being put off by others in the medical field caught up to me.  I think he understood.  Ronan’s issues are complicated.  He got that.  Ronan’s medical file is thick.  He saw that.  Ronan needs a lot of assistance.  He respected that.  He also respected that I have to be ready to go into ‘mama bear’ mode in a moment’s notice, because if I don’t, who will? 

We were in the clinic for 3 long hours that afternoon.  I’m usually dragging my feet by the end of those kinds of appointments, but the end was much more upbeat than the beginning.  Thanking the young eye doctor for his time, I complimented him and expressed my sincere gratitude for all that he did for us.  He was challenged.  Ronan was challenged.  I was challenged.  But we figured out how to work together and came out successful because of that. 

I wasn’t expecting a new ally that day, but what a blessing to have had the opportunity to create a positive relationship with a very new, very young, very thoughtful, and very helpful doctor.  Unlike some of the other providers we end up seeing, I’ll look forward to seeing this doctor at Ronan’s next appointment next year.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Linda1

I'm sure we can all relate to why it is so hard to trust medical providers, especially with our children. So glad you and Ronan had a positive experience.

Bill

WOW. Thank-you. I really wasn't prepared for such a pleasant story. I expected some version of a medical horror story. So glad to hear that some medical professionals appear to "get it", naturally. That sounds more like a naturally compassionate and practical Doctor, than the result of any specific training, or education. Keep up the GOOD WORK, Ronan!

Susan Welch

Thank you, Cathy, for posting this. On a dark, January day it is great to read something positive.

go Trump

Thanks again Cathy.

Years ago, I recall a family member who got glasses for the first time, not sure what age, but I think less than five. He said he was surprised to see the “individual leaves on the trees” he thought they were just one big green thing. How many Autistic children are living their entire lives this way ?

We had to do anesthesia for some dental work years back which was scary for a little guy.

All a part of the “new normal.” Prayers always to you and yours.

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