Forgot to Knock on Wood

I wrote a fairly cheery and optimistic year end post last night, about the success we've been having lately with working to keep Janey happy by doing things she asks for before she has a chance to melt down.  I forgot, however, to knock on wood in reality and in writing after finishing the post, and of course, Fate noticed that.

Today was horrible.  It was not a good start to the year.  Janey spent most of the day screaming.  When she wasn't screaming, she was manicly laughing, or flinging herself around frantically.

What went wrong?  Part of it might be have been that no matter how much we might want to, sometimes we can't do what Janey wants, and she wanted a lot of car rides.  Tony was tired, from her being up early and him being up late for New Years Eve.  He was a trooper and took her for a few rides, but she wanted more.  She also wanted walks, TV shows she wasn't able to name and who know what else.  We tried hard, but as soon as we'd calm her down a little, she'd lash back out.  She bit me and bit William in the course of the day---neither of us hard, but any biting at all is not something we really like.

We think part of what was bothering her was losing three baby teeth in the course of a few days.  Janey's teeth are odd.  She didn't get any teeth at all until she was well past her first birthday, and the baby teeth have been quite slow to fall out.  The dentist told us that she was at age 10 at about the dental level of a six year old.  Now her baby teeth seem to have decided to fall out all at once, leaving her mouth I'm sure feeling odd.  She has some adult teeth slowly poking through where the baby teeth fell out, and they are hurting her.  She said to Tony in the car "My teeth are rolling out!" which was an impressive sentence.  We are trying to explain to her that it's a normal thing to have happen, but I doubt she really gets it.

She might also have PMS, as she has recently entered the stage of life where that happens.  The first few months of that fun stuff weren't bad, but I know that PMS can be a very, very strong force for kids like Janey, and another thing there is next to no way to explain to her.

She tried today.  She really did.  At one point she wanted to walk to the store, but asked me in the middle of a huge fit.  I was worn out enough that I didn't take care not to ask questions as I usually do.  I asked "Do we have to be calmed down to go to the store?" and Janey quickly answered "Yes!"  I asked "Are you calmed down right now?" and she honestly said "No"  I said "Can you try to calm down?" and wonder of wonders, direct answer number three in a row, she said "Yes"  I told her to take some deep breaths, and she did, and calmed down enough that we did take the short walk to the store, where she was very good.  That lasted until about a second after we got home, when she started screaming again.

I will be glad when vacation is over.  I'm sure the lack of routine is yet another reason Janey isn't doing well.  I have to hope today is not a harbinger of the rest of the year, and I don't think it is.  But I won't forget to knock on wood next time.

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.

How are girls with autism different than boys with autism?

A good question was posed by my father recently.  He asked me what I had found over the years made autism different when shown in girls as opposed to boys.  I had some ideas, based on talking (mostly online!) to other mothers of autistic girls, but I wanted to find out more, so I reached out to people who are members of the Facebook group that is a companion to this blog, and I got some great responses!

A BIG NOTE HERE!  I am NOT an expert on autism or autism in girls!  ANOTHER BIG NOTE!  Everything I note here is NOT TRUE OF ALL GIRLS!  For everyone that had an idea for a trait that was different in girls, there were others who saw the opposite trait.  And there's the old saying "You've seen one child with autism, you've seen one child with autism", meaning kids with autism are NOT homogeneous!  They are very different from each other.  But I think it's worthwhile to collect some ideas and trends I've seen, if only to spark conversation!

The first difference with girls is one of the few that I've been actually told by someone who IS an autism expert, a specialist at a clinic we take Janey too.  I've also read a few studies that say something similar---girls with autism, statistically, are more severely affected by autism than boys.  Of course, there's many ways to look at being severely affected.  You can't just say on a scale of 1 to 100 how severely affected someone is.  But if you looked at the impact of autism on a life, and perhaps looked at the likelihood of a child someday living independently, overall, I think girls would be seen as more severely affected.  Not every girl, of course, but as a group.

Another difference mentioned by quite a few people was that girls with autism seem to be more social than boys with autism, or they want to have friends more.  They often have good eye contact, and are good at imitating social speech, even if what they are saying is echolalia from TV shows or videos.  This can make them seem more verbal than they really are.  They often want very much to have friends, but aren't sure how to go about it.

In terms of sensory issues, there's a LOT of girls that do have severe sensory issues, but many also that don't.  They seem less bothered as a group by noises, and often are less picky eaters than boys with autism.  It seems a few more of them are sensory seekers, which can be an issue in itself---they like things like hot sauce or smashing into things.

Girls with autism often seem to not have the extreme need for routine that boys do.  They are more willing to go along with changes in the day's routine.  This being said, many girls with autism are prone to MAJOR mood swings, which could be wrongly interpreted as being caused by routine changes.  I've talked to quite a few women with older girls that said puberty was extremely, extremely tough, with PMS being almost unbearable.

Many girls with autism are very affectionate.  They like people, and want to be around people they especially like.  I have seen this very much in Janey.  She has a few favorite people, and asks about them constantly.  Other girls also seem to have people that are very, very special to them.

In terms of speech, for the girls that are verbal, nearly every person I've ever talked to has told me their girls use a great deal of echolalia.  A very lot of their speech is scripted in some way, but often used very appropriately.  For example, if they want to say they are sorry about something, they might say "I'm terribly sorry I disturbed you", a line from a video they've watched over and over, but also pretty much saying what they want to say!

Another point a lot of people noted is that their girls don't have special interests as much as boys they know or have heard of.  Many, many boys with autism have a very major special interest---trains, dinosaurs, drains, bridges, whatever---but I have not heard of many girls that has an overriding interest like this.

Although there are many, many more traits I'd love to have people tell me about, there is something odd I've noticed from pictures I've seen of girls with autism.  Many of them look alike.  It's hard to put my finger on, because of course girls with autism come in all kinds of colors and hair tones and heights and weights and so on.  But there is somehow a look they share.  It's a beautiful look!  But there's more to it---a way they smile, a look to their hair, a way of holding themselves---that just makes them look a bit like relatives.

The biggest difference between girls and boys with autism, as you might have guessed from the name of my blog, is that autism is rarer in girls.  The CDC says that 1 in 42 boys have autism, while 1 in 189 girls do.  That makes autism almost 5 times more common in boys.  Way back when Janey was first diagnosed and I was picking a name for this blog, I went with Rarer In Girls.  Rare can mean several things.  Maybe for tonight, I'll go with the 3rd definition that came up on a quick Google search for the meaning of the word---"unusually good or remarkable"  Our girls, I think we can all agree, are remarkable.

90% Chance of Sunny Days

After my last dark post, things have calmed down.  Or that is, most of the time.  If you took away about 10%, or maybe less, of the last week, it would be one of Janey's best weeks.  In many ways, she is doing wonderfully.  We have noticed a strong uptick in her talking.  She seems to be truly trying to use sentences more.  She has used the potty successfully at least once every day for five days now.  She has treated us to a ton of her huge happy smiles.  She's been quite a lot of fun to be around.

But the 10% stormy weather?  Pretty tough.  We had a couple truly horrible diaper incidents and a few unbelievably intense screaming fits.  However, there is a quickness to her dark times than we've never seen before.  In the past, a sad or upset Janey meant the next weeks were going to be sad or upset.  Now, she seems to move past the moods quite quickly.

After I wrote last time, quite a few people mentioned Janey might be starting puberty, and that PMS type symptoms in autistic girls can be very, very tough.  I think it's very possible that might be the case.  In a way, that makes me relieved.  Not that I am looking forward to all that, but it gives a reason for how Janey might be acting, and gives me hope that the other, better times might be the new norm.

Janey had her annual physical today.  She rarely sees the doctor in between physicals, as she is extremely healthy.  She basically never gets sick.  I don't think she's missed a day of school due to illness for three years or so.  Her older brother William is the same way.  So her doctor was seeing her after a year of change.  And Janey put on the charm, hugely.  I don't think he's ever seen her at her best, ever.  He has know her from the day she was born, and her brothers long before that, but she has always been very upset during doctor's appointments.  Today, she was in a wonderful mood.  She talked for him a lot more than she ever has, she cooperated in being examined, she sang and danced around, and she said goodbye to him by name after the appointment.  Something in the way it all went made us feel quite hopeful and good.  She has grown up in the last year, literally as well as emotionally.  She is exactly at the 50% percentile in height and weight, and she suddenly looks like a big girl, not a little girl.  Everyone at the office noticed it.  When I looked back at a year ago, I could see that in some ways, she's made good progress this year.

Here is a picture of her at the doctor's office, smiling her 90% of the time smile.  How I love that girl.