The Age of Polio. Explosion. Part 12.
Dachel Wake Up: The Selling of Autism

Waiting Room Observations

Take-care-of-each-otherBy Cathy Jameson

A few weeks ago my kids were discussing Heaven.  After each of them shared what they thought Heaven looked like, one of the kids added that some people have to wait to get there.  Instead of going straight up, they make a stop in Purgatory.  Ronan’s little brother looked at me and asked, “Mom, what do you think Purgatory looks like.”  Hoping for a one-way ticket “straight up”, I laughed and told him that I hoped I’d never find out.  He was serious, though, and wanted a better answer. 

So I told him, “When I was a young child I enjoyed taking a subway ride into the city when we’d visit my grandparents.  Going into New York City was fun, but I was always afraid of waiting for the subway.  Sometimes the trains were quick and we didn’t wait very long.  But other times, when the train didn’t come right away, I had time to think about the strange underground noises I wasn’t used to and got scared of the darkness that I saw when I peered down the tunnel as I wondered where the train was.  That part made me feel very uneasy, and I couldn’t wait to get back on the street level!  As an older child when I learned about Purgatory, I imagined that Purgatory looked and felt like a deserted, dark subway station.  A few benches would be there on the platform, but no one else was sitting in them or walking about the place.  No trains would come zooming in to whisk to me away either – if I was in Purgatory, it meant that I was there for a reason.  I knew I’d be waiting, waiting, waiting until it was time for me to get to the next stop: Heaven.” 

By the time I finished the description, all of Ronan’s siblings were listening.  I ended with, “To me, Purgatory is a time of waiting.  Good things will come, but wherever a person least likes waiting, that’s what Purgatory looks like.”  After taking all five kids to Ronan’s big sister’s orthodontics appointment – which ran late and took much longer than we all expected, I’ve changed my mind.  Purgatory is an overcrowded waiting room where autism is put to the test. 

An overcrowded waiting room where time stands still, where some people stare and others look on with pity – that’s where we found ourselves last week.  A short appointment turned into a long appointment that kept getting longer.  Poor Ronan!  He tried so hard to be so very patient.  Poor me!  I tried so hard to keep Ronan so very patient but failed miserably. 

If I knew how long the appointment would go over (40 minutes longer than anticipated), I’d have brought more things to keep him entertained.  But in juggling him, in redirecting him, in keeping him calm, in promising him that “this too shall end”, I saw a different side of Ronan.  He was anxious.  He was agitated.  He was very concerned.  But it wasn’t for himself; it was for his big sister, Fiona. 

There she was, his biggest helper, sitting in an uncomfortable looking chair having all manner of stuff being done to her teeth.  Poking, prodding, cleaning, polishing.  Ronan’s seen it before but had never taken much interest in the procedure before.  Happy with his iPad or his favorite book, Ronan’s sat quietly in the chair next to me at a previous appointment while Fiona sat in that same uncomfortable looking chair while her teeth were being poked, prodded, cleaned, and polished.  He paid no attention to it before though.  But last week, all of his attention was directed toward his sister, and I was happy to see it. 

Because of how little he communicates, we sometimes wonder how much Ronan understands.  We know that he takes in a lot, but with such little feedback from him, it isn’t until we’re in a situation do we learn what Ronan thinks of it.  When he does expresses himself, we take note and we encourage a response always hoping that we can make meaningful contact in return.  That’s what I observed happen last Tuesday. 

Ronan’s facial expressions and his inability to focus on the few things I’d brought in his backpack to keep him happy were indicators that something was clearly bothering Ronan.  Watching him trying to get Fiona’s attention from the chairs we were sitting in for as long as he tried was inspiring.  He needed his sister.  But she was over there and we were sitting over here.  Curious about what he felt he needed to do, because it seemed like Ronan wanted to protect Fiona from whatever the technician was doing to her, I said, “Buddy, she’s okay.”  But that was not enough for Ronan.  He needed to see for himself. 

As he stood up to take a closer look I tried assuring him again, “Ronan, Fiona’s okay.  They’re doing some cleaning and taking some measurements.”  He needed more reassurance and not from me.  Ronan was determined that all was truly okay and decided to make contact.  He did that by standing up, walking over to his sister and sitting in her lap in the dental exam chair that was tilted back in the recline position.  The exchange that happened next was some of the best communication Ronan’s had lately. 

He looked right into Fiona’s eyes, tilted his head, signed “finished”, reached for her hand and then tried to lift her arm up (which is his sign for “stand up”) indicating that it was time to go.  Fiona looked at me and smiled, “Mom, he’s just so cute!”  Turning her attention toward Ronan she said, “You’re doing a good job waiting!  I’m almost done…and it doesn’t hurt, so you don’t have to worry.”  Ronan listened but tried again to get big sister to stand up and go with him.  I wished we could have gone.  The 20 minute appointment was now creeping to 30 minutes and more waiting still needed to be done.

Meanwhile, the other siblings had taken up residence in the larger waiting room... 

With how small the area was where Fiona’s orthodontic work was being done, we couldn’t all fit in the back area.  I worry a bit when we separate like that and wanted to check on them.  I ached to be reunited with them, but as has happened in past appointments where all five kids in tow, I’m pulled in one direction and they in another. 

Unable to safely leave Ronan with Fiona, I kept one ear open listening for any sibling discord.  None occurred.  I listened for the receptionist give a gentle reminder to my children about their behavior.  But no reminders were necessary.  I was able to get eyes on the younger siblings at one point.  That happened with the one “escape” behavior Ronan had during his long waiting room experience.  Likely due to the loud, whirring noise of the dental equipment being used on another patient, Ronan bolted for the front door the longer the noise persisted. 

I wasn’t worried that he’d get that far.  In order to leave, he’d have to snake his way down a hallway, around a few couches in the other waiting room and in between several onlookers.  Neuropathy in his legs slows him down, so I had plenty of time to get ahead of him and met him at one of the couches where another family sat waiting.  Looking away from their gaze, I said cheerily, “Hey, Buddy.  Let’s sit here.”  Ronan didn’t want to but really had no other place to go.  I took a look in his backpack and pulled out a snack.  “Can we take a break and eat?  That’ll help pass the time.”  Ronan signed yes and sat down.  By then, the other siblings had gathered around. 

“Mom.  You said this would be quick.  It’s taking too long,” Izzy shared. 

“I know, honey.  I think there a little busier today than usual.   Hang in there…we’ll get to go soon,” I replied. 

Soon to the kids means within five minutes.  We still had 20 more to go. 

With his snack finished, Ronan stood up again ready to leave.  I said, “Let’s go get sister first.  We can’t leave her here.”  Ronan looked at the front entrance area and then toward the hallway that lead to the exam room where Fiona was.  Holding my hand, we made our way to the smaller waiting area where we sat again.  Unsure of what to do, Ronan kept his eyes on Fiona and watched every move the tech made.  With a few more gentle reminders and loads of encouragement, this time from Izzy who’d squished in and joined us, Ronan accepted that Fiona was okay and that he didn’t need to save her from the situation. 

Things finally wrapped up.  On our way through the clinic, the other techs who had observed Ronan’s struggles smiled toward us.  Making our way into the larger waiting room, a few children looked up from their devices and stared at us.  Ronan always gets a few stares – he’s slow, he wears noise-cancelling headphones, he can be clumsy, loud, and awkward.  But today’s stares were soft, gentle, and understanding.  I smiled back and then stopped at the front desk to make Fiona’s follow-up appointment.  Ronan didn’t care to stick around to make it with me. 

Realizing how much juggling I still had left to do before we could leave, Fiona offered to take the kids, including Ronan, to the car.  Ronan usually walks with me – negative behaviors in the parking lot have been unpredictable lately.  But Fiona said, “Mom, I’ve got this.  Look, he’s reached for my hand.  We’ll be okay.”  She didn’t give me a chance to say no and ushered the kids out the door. 

Looking at the receptionist I said, “Hey, sorry about that.  They said that Fiona needs to come back in 4 weeks.”  I pulled out my calendar and waited for her response.

Instead of telling me when the next available appointment was, she said, “You have really good kids.”

Not expected that reply, I just looked at her.

“Your kids.  They’re really, really good,” she added.

“Uh…,” I stammered.

“I…uh,” I paused.  Then I smiled and proudly said, “Thank you.”

Some days it feels like we’re living in an autism hell.  Other days it feels like we’re in limbo – will we have another good day like the day before, or will things turn south?  That day, well, it was a slice of heaven to have another person recognize just how demanding our family’s life can be. 

I smiled again and said, “They’re good kids.  They’ve gone through a lot, but you know what, they do so much for their brother.  It’s refreshing.  Especially on days with lots of waiting!” 

The receptionist smiled and said, “That’s great.  Let’s hope the next visit is shorter…can you be back the third week of August?”  We locked down a time and day, and I thanked her once again. 

Ronan’s been to this waiting room before with Fiona, but it had been a stretch of time since that last appointment.  The previous time, one of our therapists accompanied us – she and Ronan sat together in the larger waiting room where the receptionist’s desk is and worked on some activities while I sat in the back in a smaller waiting area during Fiona’s adjustment.  The waiting room was less crowded.  That appointment was much quicker.  That visit was less tense.  Last week with all that waiting, with all that worrying, with all those extra people watching was a true test for Ronan.  It was a test for all of us.  I’d like to think we passed it well. 

Cathy Jameson is a Contributing Editor for Age of Autism.   

Comments

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Betty Bona

Cathy,
Your posts about your family are always so beautiful, but they're not at all similar to what I see in my family. We don't have understanding and support among my children like you do, and it sometimes makes me feel like I did something wrong in raising them. The autism we faced was totally different than what you have and much easier in so many ways, but it has, none the less, left huge scars on our family life. All three of my boys suffered sensory issues and learning difficulties they had to overcome, each with their own struggles, but only one had the social and communication issues that signify autism. I think the brothers never really understood the difference between their affected brother and themselves, and they were left with anger towards their brother for not overcoming these issues the way they did and for causing such turmoil in our family. Now that they are adults, the boys with no autism understand better, but my son with autism (who now looks nearly typical) is angry at his brothers and his parents. I often wonder if having a daughter in the mix might have helped. Anyway, the struggle goes on to bring my children together so that they have each other's support once I am no longer able to give it myself. I'm sure there are others like me who read your posts and feel a tinge of guilt for not doing the job you have done with the siblings when we have such a lower level of challenge. But I know I did the best I could and try to chalk it up to the ravages of autism. Even mild autism can be devastating to the family.

catherine costantino

You have EXCEPTIONAL, LOVELY, SMART, KIND, EMPATHETIC, FUNNY, BRAVE, FAITHFUL, SPECTACULAR CHILDREN and I love them all so much...And You and Steve. Ronan is so lucky to have you all and you him!
Your challenges are so great...But what magnificent moments too of joy and pride and love, and growth!
Love you all so much! (now stop making me cry)
Cathy

angus files

I remember the Bishop(Fred) when we got married,my father-in-law was a Canon, favours for favours even in the clergy world..nuff said! I will always remember his speech, most of it had the room in knots of laughter, but then he got serious and he said " Marriages are made in heaven but",and then he gave a long pause and looked around the room and continued " but are lived on earth first.,,very meaningful in a thousand ways.A small sentence but I go over that all the time.
Well we have certainly all done our purgatory for sure and if I am delayed on going through those pearly gates ,and have to sit on the ,for a while watching all you goody goodies ,you all zoom past me , I will maybe catch onto someone's ankle going in the right direction..so don't be alarmed...

MMR RIP

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