Wednesday, February 10, 2016

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

Tuesday, February 2, 2016

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.

Sunday, January 31, 2016

When Mama Gets Sick

I don't get seriously sick a lot.  I better knock on wood when saying that, as that is what I used to say about Janey.  This winter hasn't been an easy one health-wise, and last week it was my turn.  Starting about last Sunday night, I had a fever that got progressively worse, lots of coughing and all out body aches.  On Wednesday I finally gave in and went to the doctor (thank you, Maryellen, for getting me there, literally and figuratively!) and a chest x-ray showed I had pneumonia.  The doctor was quite sure I also had the flu, but because of my probable Sjogren's Syndrome, he wasn't able to get a swab for that.  Either way, I was pretty ill.  He gave me antibiotics and said to stay home and stay resting for at least 5 days, although I'd probably be tired and recovering well past that.

Today's been 5 days, and I do feel much, much better.  Still very tired, and doing any little thing makes me need to take a nap, but so much better that is makes it almost worth being sick, to remember how good well feels.

The big, huge thank you here goes to Tony, for taking over all of my Janey duties.  Being sick in bed with a child like Janey in the house is not easy.  Last Monday, before we realized how sick I was, I got Janey off the bus, around 3, and took care of her until 4:30 when Tony got home.  That hour and a half was about enough to do me in.  It made me realize what a house of cards we live in.  Janey needs full time supervision, every second, still now, even though it's easier than it was a few years ago.  But with me barely able to move, she made a wreck of the kitchen getting some of her favorite unconventional snacks---things like ketchup and romano cheese and duck sauce.  She came off the bus wet, which isn't common, so I changed her, which took almost all I had.  Then within a few minutes she was wet again---another change.  Then she had a toileting accident of the other kind---lots of cleaning up.  I felt like I was going to collapse, and I did, when Tony got home.

The rest of the week, Tony just took over.  He got her on the bus in the morning, which involves dressing her, giving her medication, brushing her hair and teeth, getting her something to eat (they have breakfast at school, but we always feed her at home too as she doesn't eat well at school), making sure her backpack is set, waiting for the bus with her---all that while he was getting ready for work himself.  Then he came home early each day to get her back off the bus, took care of all her afternoon and evening needs, made supper for her and us...did it all.

My thought all week was how much I admire single parents of kids like Janey.  I won't say what I've sworn never to say---"I don't know how you do it"---but I will say you are incredible for doing it.  And that I hope you get support, and I wish I had millions of dollars to help you, or at least time to give you respite.  Parenting kids like Janey is at least a two person job.

How did Janey take my illness?  Quite well, actually.  One thing that was kind of neat is I got a little of the Daddy treatment.  Seeing me, after Tony got her off the bus and fed her and so on, seemed like a huge treat for her.  I haven't really gotten that in the past.  She came into the bedroom and had a huge smile on her face, and gave me a big, big hug.  She was excited when I could haul myself over to snuggle with her on her bed.  She was actually a sweetheart all week.  If it had been a tougher week for her, as so many weeks are...well, I'm glad it wasn't.

I've got to sort out in my mind some realizations from this week.  Mostly, I have to think about how easily everything could fall apart.  If either Tony or I started to become more disabled from the health issues we already have, it's hard to picture how we would be able to take care of Janey.  And the truth is, we will, at some point.  Even without our on-going health issues, we are getting older.  But as we've found so often, there's not a lot out there to help.  We are grateful, as we always are, for her school.  Tony couldn't have worked at all last week without school.  I think next year I have to bite the bullet and find some kind of afterschool that works, if possible.  And we have to start looking for that needle in a haystack, perhaps---some way to get Janey more care when she is an adult and we are...older too.

For now, I'm just happy to be on the mend.  I will be glad when this winter is over!

Monday, January 25, 2016

Road Trip

This past weekend, we took Freddy back to college in Saratoga Springs, NY.  We were going to make it a one night trip, but with the early week reports of the blizzard possibly hitting Boston, we added Friday night on.  The blizzard didn't hit, but the two nights away made for a good little getaway.

Janey did extremely well with the trip overall.  There were many great moments.  She loves hotel rooms, and we stayed in two different ones (as it was too late to add a second night to the first one we booked).  She literally danced around with joy at her first sight of each one.  I've heard a few other parents of kids like Janey say that their kids love hotels, too. I'm not sure why.  Part of it with Janey is that hotel rooms tend to have lots of mirrors, and she very much enjoys mirrors, but I think part of it is just having a new little pocket world to explore.  She can go anywhere she wants within the room, and that gives her something new to explore on her own---something she doesn't get a lot of.

When we ate in public on the trip---one trip to Wendys and one to the hotel breakfast buffet, and when we went to the Target to get Freddy some last minute things, I realized something interesting.  It doesn't bother me when Janey gets stared at anymore, not really at all.  She was stared at plenty, but although I noticed it, I was able to pretty much ignore it.  Or else I thought "Yeah, here's one of those kids with autism you hear so much about in the press, live and in person!  Feast your eyes!"  It was a bit of an in your face attitude I felt, and believe me, that is not an attitude that comes easily to me.  But as Janey gets bigger, she stands out more and more, and unless we keep her out of sight at all times, she's going to be stared at. be it. Especially in the Target, there were plenty of odd people that I think warranted more staring than Janey, but that's life.

I also noticed during the trip that we are better able than we used to be to set aside tough moments and remember times as positive.  There were certainly screaming moments on the trip, times that Janey for no reason we could see just lost it and screamed and bit her arm, times that she was quite unhappy.  But we know now that usually, unless something big is going on, these times pass if she's in a generally good mood.  She said one of her longest sentences in a while when looking in the mirror---"I have one blue eye and one big eye"  She actually has two blue eyes that look the same size to me, but it was a cool moment to hear her thoughts while looking at herself.  She also did a lot of singing and dancing---always fun to watch.

As the years go by, I think we are learning to meet Janey in the middle.  For someone with typical kids only, this trip might have seemed like not much fun.  We did little outside the hotel rooms or the car.  We drove around a lot, as Janey loves that.  We did get out to dinner, just Tony and me, on Saturday night---thanks, big brother Fred!  We dealt with a few meltdowns, but we also laughed a lot.  Our lives with Janey are never going to be mainstream.  She's going to be stared at, she's going to scream at times, we aren't going to be able to do typical getaway things.  But we will also have the fun of watching her joy at little things, and the freedom, in a way, that comes from having a preteen that still gets a thrill out of being with her parents doing not much. We'll keep on going, and take our fun where we can get it.

Tuesday, January 19, 2016

The hat, Chipotle and the moon

I think often that if I could learn to communicate with Janey more easily, if I could teach her to be able to let us know what she is thinking and what she is feeling, so many of the other tough areas of our lives with her would fall into place.  It's frustrating while at the same time fascinating trying to understand how communication works with Janey---what she understands and doesn't, how she pulls up words or not, how to figure out what she is feeling.  Over the past few days, I noted three incidents that illustrate this.

On Friday, Freddy, Tony and I were talking about where we were going to go to lunch.  We had plans to go to the Target, as Janey was finally well enough for a little trip out of the house.  The Target we go to have quite a few quick food places around it, and we were tossing around ideas---Noodles?  Chipotle?  Smashburger?  It's the kind of conversation we all enjoy, as we like to talk about eating almost as much as we like to eat. Suddenly, Janey burst in with a phrase we didn't understand at first.  We asked her to repeat what she said, which doesn't always work, but it did this time---she repeated "Want to go to Chipotle?  Chipotle, please, Chipotle!"

It's not so much surprising that she wanted Chipotle---she is hugely drawn to the place, just like her brothers, although I am not as huge a fan, especially after their recent woes.  And the way she asked is just how she usually phrases requests---first as a question, and then repeating the word twice, with "please" in between.  But what surprised me was that she was following the conversation at all.  We weren't talking to her, just talking back and forth, and often, it seems like she's paying no attention.  But she is.  I wonder if she hears keywords she knows, or if she is following the whole train of thought.  Whatever it was, we did go to Chipotle.  It was great getting her input.

It snowed a bit on Sunday night, and yesterday morning Janey wanted to go outside in the snow.  I had to bundle her up a lot first.  As I did so, I kept up a prattling talk, as I often do.  It seems to usually keep her calm.  I said things like "Okay, now we need a coat.  Let's put on your coat!  We better put some gloves on, to stay warm.  Now here's a scarf.  Let's put your hat on.  I better adjust it.  It's on funny.  Let me fix it..." and right at that point, Janey reached out and hit me in the face, screaming.  

What ties this into communication is that right then, I myself was thinking "Jeez, do I sound annoying.  I would have hated listening to all this when I was 11.  I'd be thinking 'Can't you just shut up, Mama?'"  Of course, I don't know if that is what Janey was thinking, but I think it was.  She wanted to go outside, and she is sick of the preparations and hearing me talk about them.  Of course, that's not in any way, shape or form how I want her to communicate, and we let her know that, firmly.  But it made me think about how frustrating it must be to have the normal annoyance at parents and have no way to express that.  Once we had all calmed down, I tried to give her some words for it, in case.  I said "you can tell me 'Mama, you are driving me crazy!'  You can say 'Mama, you are being very annoying!'"  I realize when I give her phrases to say, I leave out ones like that, usually, and they might be helpful ones for her to have, as I'd rather be told I was annoying than to be hit in the face.
Last night, Janey slept very poorly.  At 2 am, I gave in and gave her a shower, as she'd been asking for for a while.  When we got into the bathroom, out the window I saw a three-quarter moon, low in the sky and looking huge.  I'm not usually up at that hour when the moon is that phase.  It looked amazing.  I said to Janey "Look out there!  What do you see?"  She was in a great mood, because she was getting what she wanted, and she answered back in glee "It's a planet!"

I was blown away.  I've never heard her use the word planet, and to hear her use it in the correct way (of course, it wasn't a planet, but it was something big in the sky, and it looked different than the moon usually looks, so that was the next guess!) was amazing.  It was one of those moments that make me realize there is so much in Janey's head that is so very hard to access, but that is there.  How can I help her use her knowledge of things like planets?  How can I unlock those words so she can use them not as one-off surprises, but in regular life?  I just don't know.  Communication is the key to helping Janey, and it's also our eternal struggle with her.

Friday, January 15, 2016

Grateful as well as angry --- a pneumonia story

It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.

When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see.  Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol.  She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106.  I called the clinic and asked if we could be seen sooner, and they said to come right in.

Finally, we saw Janey's own pediatrician, a doctor I like more every day.  Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate.  Janey was screaming and moving around.  Then a couple people came in and took a nasal swab for flu.  Again, we had to hold her down.  When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106.  The doctor was startled.  We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal.  She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm.  Finally, someone was seeing that Janey really did have a high fever.

At this point, Janey's skin looked odd---mottled and pale.  She was coughing an increasingly deep cough.  The pediatrician made the call to have her taken to the ER by ambulance.  As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types.  The ambulance showed up and we took a siren-filled ride to Mass General.  Freddy was with us, and he rode in the front.

So---back to the old Mass General ER, site of absolutely no help the previous Saturday night.  But I knew it was the gateway to great care, if we got admitted.  The plan initially was not for that, though.  A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad"  The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.

Janey cooperated for the chest xray in a way that was truly amazing.  She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them.  I was shocked at her understanding and cooperation.  The chest xray came back showing she had pneumonia in her lower left lobe.  The blood work showed a low white blood cell count.  And after a change of shift to a different "big boss", Janey's fever started to come back up.  She was shaking violently.  It wasn't time for more Tylenol or Motrin yet.  And finally, around 9, we were told she would be admitted.

It took until about midnight to get into a room.  The time in the ER felt like purgatory.  Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep.  He came back in around 10 as we waited for a room.  Janey was looking sicker and sicker.  Finally, we were taken up to our room.

Going back to the pediatric floor felt bizarre.  We had spent nearly a month there last May with Janey's burst appendix.  It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.

That night, Janey's fever spiked very high again.  She was put on IV antibiotics.  The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May.  He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care.  Finally, on Wednesday afternoon, she had her last fever.  Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released.  Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.

I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia.  Part of it is just that I've realized it often takes anyone a while to get treated.  So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better.  But part of it is her autism.  I pinned it down to two crucial events/reasons...

The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all.  I KNOW her temp was extremely high then.  Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up.  In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat)  But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then.  The feeling was---don't force her to get her temperature taken and "upset" her.  Well, that is my fault.  I knew it needed to be taken, but I didn't insist.  We all fall victim to not wanting to upset her.  But---the same standard has to be used for Janey's medical care as any other child's care.  If someone shows signs of a terrible fever, they NEED to have their temperature taken.  Maybe not at home, but it needs to be taken in a medical office, and recorded.  That was the first fail.

The second fail was the first ER visit.  What a joke that visit was.  Janey's fever was down, and I was not listened to.  I tried my damnest to voice that Janey does not show illness or pain normally.  I wanted blood done, I wanted a chest xray.  But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine.  That is where the autism comes in.  Janey was ACTING fine.  A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was.  But Janey, when she felt better, acted fine.  She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull.  And I didn't press hard enough, I guess.  So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.

I am left feeling a few things.  One is angry.  I am angry that yet again, Janey's autism prevented her from getting timely care.  Another is grateful.  We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly.  She communicated with the hospital and with me, and she was firm in what she said Janey needed.  We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General.  Many of the doctors and nurses remembered Janey well from her last visit!  It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses.  We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.

And now, a day of rest.  Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up.  I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap.  And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.

Monday, January 11, 2016

Autism, Communication and Being Sick

Janey is sick.

In her early years, in fact, until the whole appendix ordeal, Janey was rarely sick.  But lately, that seems to have changed.  She missed a few days of school in December due to a bad cold, and now, she has something else, maybe the flu.  She had a little cough last week, not enough to have to stay home, but on Saturday, she seemed worse.  Around 3, she got rapidly sicker. She was shaking  a huge amount and felt extremely warm.  We couldn't find the thermometer that works for her (she won't hold one in her mouth), but she was sick enough we took her to the urgent care clinic.  They ALSO didn't have a forehead thermometer, but it was obvious she was burning up.  Her pulse was 250, and she was very lethargic.  She wouldn't open her mouth, but her ears were fine.  The doctor decided to put her on antibiotics, with the thought she probably had strep.

Our thermometer.  Accurate?  Not sure...
We got home, and I found the forehead thermometer.  And took Janey's temperature.  And was shocked by what I now know must have been a faulty reading.  It was 107.  I am told that if she was really that hot, she'd have been in a coma or something.  I took it again a minute later, and it was 106.  I took mine, and Tony's, and Freddy's, all of which read normal.  I took Janey's a few more times---over and over, 106.  I called the nurse line.  They told me to take off Janey's clothes and give her a tepid shower, and call them back in half an hour.  We had given Janey Tylenol just before I took her temp.  I did as instructed.  In half an hour, Janey's temp was 104.  The nurse told me when I called back to take her to the ER.

I hate emergency rooms.  No matter how good a hospital is, the ER seems like the weak link.  The ER was the place that didn't even touch Janey's belly, that we can remember, when it turned out that her appendix has probably already burst.  But I was scared.  I'd never seen a fever that high.  So Tony drove us to Mass General.

I don't like ERs any better now.  By the time we got there, for whatever reason, Janey's temperature was normal.  She was being herself, screaming and then being cheery and lively.  I tried to tell them about her fever just a bit before, but I honestly think they thought I was making it up.  I felt like screaming "Yeah, I came here just for fun.  No better time than an ER on a Saturday night with an autistic kid.  Good times, good times"  They gave Janey a very minor exam and sent us home.

Yesterday, every time the Tylenol or Motrin ran out, Janey's temp was back up to 104 or so.  She has a dry cough and she slept most all day.  Today I will call for an appointment at her regular doctor's office.  I hope they listen to me.  It's very possible she has something viral, a flu, that will just run its course.  The ER doctor did manage to look in her throat and see it was fine, so it's not strep.  But the point is, I don't know and she can't tell me.

I used to be a lot more laid back about illnesses.  But when you have a child with a burst appendix, in the hospital for almost a month, a child that presents hugely atypically, even with her blood tests---you get scared.  You doubt yourself.  Janey, along with many kids with autism, doesn't react to illness in typical ways.  I do wonder if this is even on a physical level as well as emotionally.  She was almst never sick for so many years, even when other kids in her class got sick.  I think her body overreacted to any virus or bacteria, and kept any symptoms from showing.  Even now, I think when she does get sick, it takes a pretty strong strain of whatever to lay her low.  And she can't accurately tell me what hurts, or if she has odd feelings.  For all I know, she always hurts or has odd feelings.  I certainly hope not, but I don't know.

So, we fumble on.  I hope Janey's better today.  Right now, she is peppy, and after taking Motrim, fever-free.  But who knows?  We will keep on trying to make sure she gets proper health care, and we will try to educate medical professionals on the reality of life with low-functioning autism.  It's all we can do.