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27 December 2009

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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...

autismvox

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.

autismvox

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.

autismvox

@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.

autismvox

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!

autismvox

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.

autismvox

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!

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