At the ER

"He's twelve?" 

This was uttered by at least one EMT and one nurse who saw Charlie yesterday. 

Charlie's age and his height and size are always on our minds, but ever so much on Saturday. In the morning, we took him to his pediatrician's office. Earlier this week, Charlie had bitten his mouth at school. The school nurse had checked him and, while we knew he wasn't so comfortable, he's been eating and we kept an eye on his mouth. But on Christmas day, his lower lip was becoming discolored and by Saturday morning, it was infected and he woke up tense and distressed. A visit to the doctor---to the office where Charlie has done really well on numerous appointments, and where the staff has shown a great deal of understanding and kindness to him---was in order.

The practice's main building is located in an old Victorian house and its spaces---waiting room, exam rooms---aren't too spatious. Charlie's always been ok on one of the plastic-cushioned benches by the front window and that's where he went to sit while I signed him in and Jim parked the car. It was as well; every seat was taken with sniffling, coughing children---all about 6 years old or under, it seemed---and their parents.

I turned in time to see Charlie's face drawn, his teeth gritted, and his head thrown back. The glass shattered, he cried, the woman sitting with a young child beside him gasped. Actually, everyone was gasping or crying. A doctor appeared, a nurse appeared, Jim appeared and Charlie was very, very, very upset. 

Several minutes later, he was calm, though weeping as he stood in a corner of the now-emptied waiting room, when the EMTs arrived and I answered questions in a low voice while Jim gently ushered Charlie out. I stayed several minutes longer to talk to the doctor and office staff and assure them that we'd pay for the window and to thank them for taking care of Charlie over the years, all while thinking, are we never going to be able to take him back here. And knowing it wasn't the moment to think about this. Though of course I started thinking, maybe if both Jim and I accompany Charlie......it's time to start looking for another doctor's office........

We went to the ER of our local hospital. I went in and registered Charlie while he and Jim parked the car and took their time coming in and that's how we managed what turned into over two hours of waiting (though we would have waited even longer if we had not come in the morning; the waiting room was half-filled when we came, and packed when we left at 2.30pm). With the tight quarters of the pediatricians' waiting room in mind, Jim and Charlie walked around the hospital and stayed in the  big, well-lit waiting room after his name was called and we were told to wait in the pediatric waiting room.

This room was triangular shaped with only a few chairs and a low table in the middle, with a bead coaster, the same exact one Charlie was once entranced by. All the chairs were first occupied by four adults, one baby, one toddler, and a lot of diaper bags and baby carriers. A nurse appeared after a few minutes and everyone, and all their stuff, disappeared behind a door. I sat down, texted Jim, and pulled out a book.

There was a time when I was never without a book in my bag. This was in the time before iPhones and Blackberries and the whole hand-held menagerie, but also before Charlie was born and I'd get to appointments a bit early to sneak in a few more pages, or not mind it when I was in a long line at the supermarket. With Charlie a babe on my arm, and then a small child requiring constant hand-holding and watchdog supervision, I was never "without anything to do"; quite the opposite. That's never really changed though sometimes---waiting in the car to pick up Charlie---I've done some hasty reading in preparation for a class.

But it happened that I had a book, not looked at since college, of this author with me and, Charlie being with Jim, I read about "the central issue of Senecan moral philosophy [being] the control of the passions [affectus] and the attainment of inner peace through rational conformity with nature" while two women with headscarfs and a baby in a carrier sat down beside me, and an older woman in a green quilted jacket carrying a pale baby and a younger woman (whom the baby closely resembled) took what seats they could find. The younger woman in the headscarf went to the cafeteria and the other woman noted that she was, indeed, young, and hadn't brought a change of clothes for her daughter (the baby), who kept vomiting. The woman in the green coat noted that she works at the hospital, that it's a teaching hospital, and why weren't there more residents around to deal with so many patients (including her grandson, who was chewing on her leather purse strap and looking at me with big blue eyes).

I kept texting Jim; Charlie was fine, sitting, asking for the car, still sitting. But as the second hour was nearing an end, and with the memory of that broken window on my mind, I pushed open the door to the exam rooms and asked, how much longer? Another doctor was coming at 2pm, I was told. And then, bring Charlie in.

The nurse who first came in chided Jim and me when we answered his question of "how old are you." "He's autistic," Jim and I each said; "no one told me," replied the nurse. It's the case that we often rush to tell people just that piece of information, only to get the response of "yes I know, what's your big concern?". It was hardly the time to quibble and the nurse looked Charlie over and then left and, while we waited, I noticed that the two women and the toddler across the hall had been among the original people I'd seen in the pediatric waiting room. 

Another nurse had mentioned that our pediatrician had called ahead about Charlie and maybe that was why a doctor (first name: Pompeo) came in soon. He was decisive in his manner and movements and Charlie responded to his requests to open and close his mouth, and let the doctor pull at his lip and look into his mouth and at his gums, for quite awhile. The doctor told us that the infection hadn't spread beyond Charlie's lip and told us to watch if it did (and to come back to the ER if that happened), and that it was good that Charlie had not lost his appetite. A nurse brought in an antibiotic in cup and pill form and was very surprised when Charlie gulped down the (quite large) pill I handed him. As we went out, I saw the second family who'd originally been in the pediatric waiting room still in an exam room and they kind -waved, kindly.

The cold air and the rain felt good as we hurried back to the car and then to the Golden Arches and then Walgreen's (my 7th trip in 5 days, should you need to know!).

I've read so many articles about "how to help your autistic child get through the holidays" and about getting through doctor's visits. But so few address how to help your older, pre-teen, adolescent, teenage, adult autistic child get through the holidays and the doctor's office (and just the waiting room). On the one hand, all these years with Charlie have taught Jim and me what to do and what not, but now that Charlie is older---"only" twelve, but older---what once worked doesn't, or only works to a certain extent. Everyone was very helpful and kindly to Charlie, but just as he's now going to a separate school for autistic children, so we're thinking that it might be best to bring him to a clinic that sees more patients with disabilities (with a roomier waiting room). After the pediatrician's office, Charlie did so well waiting for an seemingly endless amount of time and then following the doctor's directions (and letting the doctor poke his fingers in his mouth). And all while he must have been suffering from a tremendous amount of pain from the infection.

He's a growing up boy. He can handle a lot, but people and places that can reach out to handle his needs---these we need to keep looking for, and to keep creating.

Comments

[emma]

I think you should continue seeing the same paediatrician if you can, for as long as is practical (Dimitri has attempted and nearly succeeded in kicking the neurologists computer off her desk - we still go to her with out to many problems).

I really don't know how many doctors or hospitals for adults are experienced at working with people with disabilities, logically, they should exist, but I imagine it's worth asking around from now just to find out.

Charlie did great in the ER, letting someone examine his mouth. Hope you have a quieter day today.

[Dwight F]

Ouch. He's OK now? No glass cuts?

[Jen]

Ouch- not a good day. I hope that his infection is getting better, and that he didn't hurt himself on the glass. I hope that today is quieter for all of you!

[susan senator]

With Charlie beginning his teens, you are venturing into that uncharted territory of adult autism, where my family is now. Each trip, each appointment is rife with old problems that are new as our kids become big. I guess it is up to parents like you and me to begin to gently educate the public just as we did when our guys were little. It might be that *you* will have to write the article about getting through the holidays...

[Kristina Chew]

I've thought about that, Susan! But I don't have any good suggestions---so far just feel like we're just doing what we can. What did you do as Nat got older?

Thanks everyone, amazingly, no cuts from the glass. It's Charlie's lip that was a big mess---2/3 all swollen up. The doctor wiped him off with gauze and Charlie is very good about taking medicine (pills) and I suspect that will help whatever infection he got. He's had mouth infections before and they last very long because it's impossible to get him not to stop touching the sore with tongue or fingers (the doctor acknowledged this).

I really hope we can go back to this doctor again, just for check-ups. Charlie's had shots there, everything, never gone there in such a state of pain (and no on the day after Christmas, surrounded by so many sick children). I have to stop by the doctor's office next week to get a form for school signed and talk to them----I'll be writing about that, you can be sure.

[susan senator]

I'm trying to think about what we did/do as Nat gets older. Our experiences were very much as you often describe. So much is just getting through, day-to-day. But sometimes I can look back and think, "Oh, that made it easier." One thing I realize is that with no autism experts in the medical community, we are all experts, for better or worse.

[Jill]

What is it with autistic kids and windows? One of the boys where I used to teach crashed his head through a window at the school twice, once when he was outside and I was seated just inside the window, talking on the phone to a professor who was supervising my master's program.
The boys parents had mattresses pushed up against every window in the house (or so it seemed) because he had broken many windows at home, also by crashing his head through.
I wonder if his head hurt?
I hope Charlie is OK. A pediatrician's office might want to invest in shatterproof windows.

[Kristina Chew]

The pediatrician's office told me other autistic kids had broken windows......

For Charlie, there might also be an issue of perception--of not really seeing that the window is there, especially when he's very upset and things are (I think) swirling around him.

[susan senator]

Nat has also put his head through a window, (at our house) but it was simply because he had leaned back in his seat overzealously. He was a bit disregulated at the time. Sometimes it might just be about not being too skilled orienting ones body in space, rather than a "behavior," as some might say.

[Louise]

Did Charlie *intend* to break the glass, head-butting it? Or did he fling his head back and break the glass unexpectedly? (The latter would have been a shock to himself as well as everyone else.)

From what you describe, it sounds like he has been sitting in that seat, and perhaps flinging his head back when in intense distress, since he was a toddler. Now that he's so much taller, he can do the exact same thing that he used to - with very different results.

Do you ever talk about the passage of time with him, perhaps looking at these beautiful photos of him growing up over the years, or toys he used to enjoy? He may need some solid way to grasp the fact that he is changing physically - and thus has to act differently as well - act as Nature is instructing, as Seneca might aver.

[Kristina Chew]

@Susan and Louise, I think that's what happened---Charlie flinging his head back; he's been shaking his head a lot, too, to deal with the pain of his lip. Needless to say, the collective astonishment of everyone else in the waiting room only added to his sense of, now I'm really in big trouble.

I show him the old photos of himself a lot, though I have to be careful. Charlie had a phase (still kind of has it) when he tried to put all the photos he could find down a crack in the staircase, where they could not be retrieved. Prior to that, whenever he saw, photos, he shredded them into bits.

[karen d]

Oh Kristina. (((HUG))) All I could think of when reading this: thank goodness they did not go to CA. I mean, I know it was a disappointment, but I think this would have been so much worse if you had to do all this stuff in CA, in unfamiliar territory for Charlie.

I sincerely hope that Charlie is on the mend now and the three of you can enjoy some down time together. xo

[Linda Sullivan]

Yay for the Pediatrician's office saying other autistic kids have broken windows. Sad for all the waiting, could have been a response to pain from the infection, frustrated at the long wait, little chidren's noises or none of those.
Good for all of you taking it in stride.

[mothersvox]

I like this from Jill: "A pediatrician's office might want to invest in shatterproof windows." Yes, they should.

Hugs to all of you.

[farmwifetwo]

Hope he's feeling better.

Maybe the school might have suggestions for a ped that specializes in special ed children.

We are lucky to have one.

[Kristina Chew]

Our pediatrician is on the list of places to go! I think what we'll have to do is to have both of us go, and have Charlie wait with Jim outside or in the car.

On a bike ride....sunshine is a good cure.

@karen d, I have been picturing us sitting at Oakland Kaiser's ER for hours; what a nightmare. We have been to the hospital that we were at yesterday before (fall from the bike when Charlie was younger), and also for audiology testing and other things. So he was in the system, that part was easy---the woman in the green coat who was there with her daughter and grandson told me that her daughter now lives in North Carolina, and they ended up at the ER because all the clinics she took her grandson too refused him, as he is from out of state and not a patient. That really said to me, imagine if we'd gone to CA---not good.

Will look as much for a big waiting room and exam rooms when we search for a new ped---

[Stimey]

What a tough day for all of you. I'm glad that Charlie was able to get cared for in the end. I hope that when you go in next week that your pediatrician is kind. Big hugs.

[Jen]

Just a thought... I was doing a lot of head shaking last week. My sinuses were really crummy feeling, and my ears were congested as a result. I don't feel dizzy in a sense of wanting to throw up, but definite dizziness.
Glad his head is ok from the run in with the window.

[Christine]

I can only imagine the stress! Oliver does fairly well in waiting rooms. And we've been in our share this year. One thing I do when possible is to call ahead and ask if they are behind schedule and how long of a wait they think it will be. I remind them that waiting is very hard for my boy. Often times they tell me to come 15 minutes or so after our appointment time. Or else they make a special effort to get us in as on time as possible.

Hope Charlie is feeling better!

[Kristina Chew]

The pediatrician called today to check on Charlie--more than appreciated this.

[Louise]

If your pediatrician called to check on him, then you probably don't have to find a new one. While the event was mortifying, it obvious that Charlie wasn't trying to be intentionally destructive.

Maybe your doctor likes Charlie and wants to continue to see him! Doctors get affectionate feelings for their patients as they watch them grow up - I know ours did.

We're glad everyone there is okay.

[Kristina Chew]

It's a practice with a couple of doctors. Charlie usually sees the Nurse Practitioner (she is great!) but the doctor who was in yesterday had seen him once, when he was in for a recurring case of impetigo. (That's another couple of posts---)

[Regina]

Omigosh.
I am sorry that Charlie has the lip infection and even if it doesn't completely heal soon, that the antibiotic helps with the inflammation and pain.

I am very glad that his head is all right and that he did not cut himself when the glass shattered - that would have been awful.

Based on what you said, it may not be the case that you need to switch doctors. If besides this event everything else has been sympatico, I would err on the side of not changing unless something explicit comes up. FWIW, I've known typical kids who have accidentally broken windows or patio doors.

My warm wishes that Charlie is on the mend and with affection to you.

[Rose]

Bless your heart, it isn't easy, one can see that.

[VAB]

Our ped specializes in special needs and, in fact, only takes new families if they have special needs, so there must be some more like that out there.

[Phil Schwarz]

Glad Charlie was not hurt by the broken glass. Sounds like your ped practice is a keeper. I hope Charlie's mouth infection heals quickly!