The New Pediatrician...Autism at the Doctor's Office

A few months ago, I made the tough decision to switch Janey to a new pediatrician.  Our old pediatrician had been with us since the day my oldest William was born.  He helped us with William as a little preemie, he guided us through both boys' asthma, and he was at the end of a number of desperate phone calls at various times in my years of raising the kids.  I liked him a lot.  But for a number of reasons, he wasn't the right doctor for Janey.

The most important one was just in terms of ease of transportation.  He was at a clinic in the city, one I couldn't drive to.  It was very easy to get to by public transportation, but with Janey, that's not always practical.  I needed a doctor I could drive Janey to easily, so Tony wouldn't have to miss work.

The other reason, though, is that I never quite felt he felt comfortable with Janey.  I am not faulting him for that, at all.  Janey is tough.  He was professional with her, but I don't feel like he truly got her.  And that's okay.  Not everyone is able to deal well with a child like Janey.  I have realized that over the years.  Some friends fall away when faced with the reality of her.  Others step up to the plate.  To be brutally honest with myself, if I had not been thrust into the world of parenting a child like Janey, I might be one of those who didn't deal well with it.  And so I try to understand that not everyone can.  But after Janey's appendix rupture, I realized it was vitally important for me to have a pediatrician who felt comfortable with her.  Her old doctor had nothing to do with diagnosing (or not) her burst appendix--that was all done at the hospital--but I realized I needed a doctor who felt comfortable enough with Janey to tend very closely to her physical health.

So how did I pick this new doctor?  I'd like to say I did all kinds of research, and interviewed doctors, and all that.  No, instead I picked the clinic I'd like to drive to, looked at the pictures of the pediatricians with openings and chose the one I liked the looks of.  That's how I roll.

We took Janey after school last night for her physical with the new doctor.  Things in the waiting room did not go well, to say the least.  Janey thought she was going for a ride, a nice long ride with lots of music, although we of course told her she was going to the doctor.  But when the reality of that hit, she screamed.  She screamed for the whole half hour it took us to be put in a room.  Then she screamed in the room.  She stopped a little while they took her height and weight and blood pressure---she likes that.  But she resumed screaming after that.  This wasn't the fault of the office.  Monday night is a busy time in a doctor's office.  I hadn't realized that.  And they were very sweet to Janey as we waited for the doctor, but Janey was not happy to be there.  We kept reassuring her this was NOT the hospital, she WASN'T going to stay overnight---but I am sure there was some flashbacks for her that weren't pleasant.

And then the doctor came in, and I somehow knew immediately we'd gotten lucky.  I liked her right away.  I loved how she addressed Janey directly, asked what she liked to be called, said she was sorry sincerely for the wait, noticed within a minute the main thing I'd been worried about (that Janey's spine seems curved), examined Janey quickly but thoroughly, was there for any questions, and emphasized over and over that we could call her about anything, any time.  She was warm and caring and just exactly what I had been looking for.

Janey calmed down while she was there and took to her right away, which is not the case with everyone, that's for sure.  Everything went well, until of course shot time.  Somehow Janey had gotten a little behind on shots, and in fact had never somehow had the 2nd chicken pox vaccine she was supposed to get a while ago, so she needed 3 shots.  Two nurses came in to give them to her.  We held her down, probably more so than at first the nurses thought we needed to, but the minute she got sight of the needles, she screamed and tried to bolt, with amazing force and suddenness.  They were startled!  We managed to get her held again, and she didn't seem to mind the actual shots at all.  We left feeling good about the appointment, although drained.

So now, we have to get an xray to see if Janey has scoliosis.  I hope she doesn't, of course.  We also discussed various options for dealing with PMS, if that becomes a problem---we've just started down that whole road.

I'm glad we made the doctor change.  It's hard sometimes, not just with doctors but with people in general, to accept that not everyone is going to embrace Janey, but it's a fact of life, and I understand it.  It's up to us to keep working to have as many people in her life as we can that do embrace her.

No better, for now

I wish I could say Janey was doing better today with her crying, but she isn't.  She's had a few okay moments, but in general, she's cried all day.  We have no idea what is going on, and it's scary.  I don't think she's sick, but we finally gave her some Tylenol in case, as I asked her where it hurt and she pointed a few different places.  I think something sets her off, and then it feeds on itself---she's crying because she's been crying.  If this goes on much longer, I don't know how we will handle it, or how she will.

We tried today---we took her out early to the thrift store she usually loves.  She was okay in the car, and part of the time in the store, but then there was a little boy crying and that set her off crying too.  Tony noted how their behavior was almost identical, although he was probably about 18 months old.  They talked about the same amount, and their cries sounded the same.  She cried a good deal of the ride home, and since then, it pretty much hasn't stopped.

Tony took the kids to the free flu shot clinic at the community center, as Boston has declared a flu emergency.  He was prepared to leave if Janey couldn't take it, or they couldn't take her, although we did want her to get a flu shot, but it's most vital for Freddy, who has pretty significant asthma and some other health issues.  Janey did start to scream her hysterical scream the minute they walked in, but for once it helped out.  It was very obvious to the workers there that she had some major special needs, and they let Tony and the kids go to the front of the line.  I always feel funny about anything that feels like special treatment, but there was no way she would have stood the hour or so the line would have taken, so it was what it took to get her a shot.  Then Tony took the kids to a local chicken place to get take-out, but Janey was too hysterical and he had to leave and walk home with her, leaving Freddy to have to pay with his limited cash for the order they had already put in.  We payed him back, of course, but it's just one more example of the siblings being affected and shortchanged by the screaming.

A minute ago, Tony called me from the car.  He had taken Janey with him to take Freddy to a friend's house (which I am sure will be an extremely welcome time of respite for Fred) and he was talking to Freddy about how we are handling the crying.  He said "We are having to divide and conquer to handle it" Then something amazing happened---Janey through her tears said very plainly, right away "Why does conquer mean, Daddy?" She has NEVER asked what anything meant before.  She has extremely, extremely rarely ever asked a question for information, just asked for physical items.  Tony and Freddy were both shocked.  So maybe, maybe, she is undergoing some kind of mental leap, which is causing her anguish.  We can hope it's something like that, but if it makes her this sad, I question whether it's even worth it.  Would I trade her being a little bit more aware for being a lot less happy?  I don't think so, although that might be hugely paternalistic of me.

It's been a rough weekend, and it's not even half way through.  I am appealing to whatever deity still will give me a chance with my limited faith to help us here.  Mostly, to help Janey, and ease whatever this horrible mental pain she's having is.