Communicating Pain

If I could make a wish and be able to have Janey freely and easily talk about one subject only, that subject would be pain.  I wish so much she could tell us when she is in pain, and where the pain is, and how bad it is.  Not being able to do so almost cost her her life, when her appendix burst, but pain far less critical to know about than that still is something I would very much like to be able to have her tell me about.

Yesterday, Janey said "Do you want a band-aid?  Do your legs hurt?"  That was about as clear as her pain talk gets---in her trademark Jeopardy style form of a question talking.  She has her period, something that has only happened a few times without medication bringing it on, and I was able to figure out that was most likely cramps she was feeling.  I'm glad she could tell me that much, but there was so much more I wished to talk to her about---to ask her how bad the cramps were, to see if the Motrin we gave her helped, to ask if anything else hurt.  Today she was just cranky all day, and we were pretty sure she was feeling cramps again, and gave her Motrin again, but we could have been way off.  Maybe she was just bored, or upset about something else.

I try to imagine how it would be to not be able to describe pain, or understand why I was feeling it.  I think especially about headaches.  I get those a lot, and I wonder if Janey does too.  I wonder if a lot of the days she's just off, just upset, her head is hurting, and she doesn't know how to tell us that.  If I ask her, she generally just repeats when I've said---I say "Does your head hurt?" and she says back "Does your head hurt!"  I wonder how often she's had a stubbed toe or a stomachache or a sore throat and we had no clue.  I think she thinks we know what she is thinking, and I so hope she doesn't think we just ignore the pain she's feeling.

Of course we have tried AAC apps to communicate about pain.  And like most everything else with them, we've had very little success.  Either she pushes them away, or she chooses the middle button of each screen every time.  Or she picks a word she likes the sound of and picks it over and over, mainly "Grampa".  She knows how to get to that word on every app we've tried, and that shows us she can manipulate the screens when she wants to, but she doesn't want to, or at least she isn't able to do it consistently.  

I work hard on giving Janey the words she needs to describe pain, but I worry about putting words in her mouth.  Yesterday I kept saying "You have cramps", but of course, I don't know for sure she did.  I'm working too on taking her temperature by mouth, to have another way to judge illness. We had a forehead thermometer, but I never trusted it to be accurate. She will now hold the thermometer under her mouth for a minute or so.  I also check her oxygen with a little home meter now and then, just to get her used to medical checks.

I read the other day about a teen with autism who had COVID, whose parents weren't allowed to stay in the hospital with him.  That is the nightmare to me---that sometime Janey will be not with Tony or me, will be sick, and will be unable to explain what is wrong or understand what is happening.  That's the kind of thing that keeps me up nights.  I've seen the mixed bag that is medical care for those like Janey. There are those that are great at helping her and listening to us, like her current pediatrician or the surgical team at Mass General.  And there are those who were not, like her old pediatrician or the ER at Mass General.  In this pandemic time, I hope you are all well, but most especially your loved ones with autism.  The world, even the medical world, doesn't always understand that not everyone can speak up and say what hurts.

The summer of the virus

I'm thinking of all of you this summer, especially those earlier on in the whole autism journey.  Every day, I picture how hard it would have been to have a summer like this one if Janey was still as unhappy as she was for many years, and if her behaviors in showing that unhappiness and pain were still as intense.  As it is, it's not totally easy, of course, as it isn't for anyone on Earth right now, but it's nothing like it could have been.

We chose not to "send" Janey to summer school.  I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day.  It was a no-brainer to turn it down.  Zoom meetings quite simply don't work for Janey.  We tried our best during the school year, for the hour a day her class met.  At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour.  At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day.  Either way, it wasn't in any way worth it.

I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings.  I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond.  This wasn't the case with all the kids in her class.  Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey.  That surprised me.  But as we all know, every kid with autism is different.  I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.

One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to.  Or at least she has less liking of repetition she hasn't herself chosen.  She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while.  She'll eventually get bored and cycle in something new.  But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well.  I felt for her teachers very much.  They had not signed up to be virtual teachers or educational technologists.  They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way.  And it just didn't work for Janey.

A typical scene this summer, watching videos outdoors

So---the lack of school this summer feels like a huge relief, truly.  I have no idea what I'll do in the fall if schooling is still virtual.  I don't think Janey will be going to that kind of school if it is, one way or another.  We will have to explore our options.  I also just don't know what will play out if school requires masks all day, and 6 foot distancing.  I know that Janey would not be able to comply with that.  She will wear a mask for very short time frames, just to be able to go to the 7-11 and get ice cream or chips, but all day long---that will not work.  I worry especially about the bus---there is no way it would work there.  I worry about her getting COVID, about her teachers or bus drivers or paras or another else getting it from her or giving it to her. It is hard to picture how it's all going to play out.

How are we at home, aside from all this?  Not bad, overall.  Janey has been fairly happy and content.  She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that.  We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30.  The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible.  If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8.  But the amazing thing is she is actually mostly staying on her bed once we say to.  The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever.  It's nice.

It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period.  The only other time she has was when we gave her medication under the supervision of a specialist.  This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on.  It's awful to see her crying in pain, and knowing she doesn't really get why it's happening.  I've done my best to explain it to her, but I don't know how much she understands.  We have been lucky that for whatever reason, she usually doesn't get a period.

I hope all of you are well, and surviving this tough time.  I'd love to hear how you are coping.  Is there summer school where you are?  How do things look for the fall?  How is it going with masks, with the isolation, with the general tension a pandemic brings?  I hope very much you are all healthy and hanging in there, and I send our love.

"Frustrated, Angry, Bored"

Janey has had a tough week.  After almost two months handling the quarentine like a champ, I think she's had enough.  She's been screaming and acting out much of the day, every day, staying up most of the night and sleeping during the days, tossing things around---just not happy.  Last night she had been yelling for hours. Out of desperation, I turned to her iPad's talking programs.  Using the one program she seems to like, Proloquo2Go, I went to the feelings page and asked her to please tell me what she was feeling.  Without hesitation, she picked "hate".  And pushed it over and over and over.  Fair enough.  Then I went to the body parts page to ask her if anything hurt.  She picked "feet", which is something she often picks.  I asked her if she needed a foot rub and she said yes, so we did that, and then she went to the program and picked "legs" and "arms", so I gave her a leg and arm rub too.  Then she exited the program and told me to go away.  The rest of the night was far better---she slept well and didn't scream at all.

So...why don't we use the "talker", as we call it, more?  Because Janey won't.  We've tried and tried.  I've read whatever I could on using it.  I've tried modeling, tried having it open near her as much as we can, tried programming words she might want into it, tried all I can think of.  Most of the time, she strongly rejects it.  She's several times used her limited speech to say "I CAN TALK" when I try to get her to use it, when I've said how it can help her talk.  I don't know why she doesn't like it more.  But I have respected her wishes, partly because trying to force her to do anything is a losing game.  So for quite a while, we haven't even tried it much.

I realized last night that part of why I don't try it more is that I was a little obsessed with using it "right".  I wanted to have her learn to use it for sentences, to move between screens, to try new words with it.  But the times it worked best was when I first went to a screen with a theme, like I did last night, feelings or body parts, or foods or colors or things like that.  She readily chooses when I do that.  I think she can read the words some, and uses them more than the pictures, but I have no way to prove that.  But I am going to try to more often just open a screen for her and let her pick.

This morning, I pulled up the feelings screen again.  Instantly, Janey picked "Frustrated, Angry, Bored" in rapid succession.  Well, that about says it all about life being stuck at home.  I told her I felt the same way, and I wish there was more we could do to help.  The biggest problem right now is masks.  Janey will not wear a mask, and it's the law here in Massachusetts that masks must be worn in public.  There is an exception for people with special needs, and I know we could use that, but the other part of it is that we believe in the masks, and are very scared of getting sick.  Aside from the disaster that Janey getting COVID-19 would be, if she gave it to Tony or me, we could get very, very sick.  So, while the virus is still badly raging in this area, we are stuck.  We can go for car rides to nowhere or play in the driveway, but that's about it.  And who wouldn't be frustrated, angry and bored----especially if you were 15?

This whole virus life is hard on everyone, but especially hard on kids like Janey.  She doesn't have friends to text or FaceTime with.  She doesn't read books.  She can't take walks even right now...if she would wear a mask, there's still the problem of her touching everything in sight.  She is stuck in an endless dull day.  And we are trying, but it's hard to break up the boredom.  I'm surprised it took her as long as it did to get angry.

Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

Arm Biting

One of Janey's most consistent challenging behaviors is her biting of her own arm.  It's always her right upper arm.  She raises it to her month and bites the same spot.  It happens any time she is upset, and many times when she's not really upset, but overexcited or wound up in other ways.  The bite varies a lot in strength.  It can range from almost more like sign language with no real biting at all to actually biting down very hard on her skin.  She almost never breaks the skin, but she bites hard enough so she has a permanent hard area of callus where the teeth hit her arm.

The biting started quite suddenly when Janey was around eight.  One Friday, she came home from school with a bruised area on her upper right arm.  We had no idea what it was from until she got upset that weekend and started biting herself right where the bruise was.  From that point on, it's happened at least once a week, sometimes once a day, or hour, or in the worst times, a minute.

I think the biting is sometimes a release, a way to let off tension, and it's sometimes a way to communicate anger or annoyance at us.  When it's mild, I can see just ignoring it or using it as a starting point for discussion---"You are biting your arm.  Do you feel angry?"  However, when it's more severe, it truly hurts her.  This past weekend, when she was crying, I asked her if something hurt, and she said "Does your arm hurt?"  When I asked her to point at the hurty place, she pointed right at the biting area.  It made me feel a huge wave of sadness, thinking about her causing herself pain.

I have very few ideas for stopping the biting.  We've tried a lot of things---an ace bandage over that part of her arm, calling her attention to the biting and asking her to stop each time we see it, behavior plans here and at school, any number of millions of different bite toys, chewable jewelry, fidget toys, even bite-able toys meant for dogs.  Nothing stops the biting.  It seems like part of the whole routine for her is feeling the teeth on her skin.

Why does Janey bite her arm?  I have some theories.  One is that she learned she couldn't bite other people.  It's sad to think she then turned to herself.  If she feels angry enough to bite, and she knows biting other people will cause a big huge scene she wants to avoid, she bites herself.  In thinking about that, I've tried a few times making a big scene when she bites herself, but that hasn't seem to work at all.  Another theory is that the biting has become a habit, like nail biting or hair twirling or something.  But it doesn't happen when she's just bored or doing nothing else.  I've never seen her bite when she wasn't at least a little upset.

Searching the good old internet for ideas about biting is as often not that useful.  It so often seems everyone giving advice goes to their own corner and gives advice based on their own theories.  And often, the "expert" advice seems to assume that the parents have never tried a thing.  Ignoring her?  Figuring out the cause of the biting?  Giving her something else to bite?  Gee---neither her school or us have ever thought of anything like THAT!  It's very frustrating.

A problem with the biting beyond it hurting Janey is that it seems like self-injurious behavior is where a lot of programs draw the line at working with kids.  It's one of the most common questions I've seen on screening-out type applications.  And I can understand that.  It's a scary, awful thing to see at its worse, and I am sure sometimes there's also a worry that we as parents will think that Janey was somehow hurt by someone other than herself.  But it leads to more isolation.

Like with so many other areas of autism, we just keep doing what we can do about the arm biting.  We cobble together various ideas.  We try to keep her happy, which is the best way to keep her from biting.  We talk to her about it, and hope she understands some of what we are saying.  We work hard to calm her when she's upset or overexcited.  And we offer our ears, ideas and thoughts to anyone else dealing with seeing a child they so love hurt themselves.

"Take Care of Yourself"

I've been told to take care of myself a lot.  It's good advice.  I've been told the story about how on airplanes, they always tell you to put your own oxygen on first before helping your child.  Yes---that is true.  But the simple fact is, with a child with autism, it can be very, very hard to take care of yourself.

I've had some horrible jaw pain off and on for about a month now.  I keep hoping it will go away, as pains usually do, but it hasn't.  I'm sure it's nothing serious, but it's been bad enough today that finally tomorrow morning I have a doctor's appointment.  I wanted one sooner, like today.  But by the time that around 10 am I realized the pain was enough that I really finally needed to give in and get some help, it was too late.  Too late because by the time I could get an appointment, I'd be too late to greet Janey's bus.

Now, that's not just an autism problem.  Of course, everyone needs to be home for their kid's bus.  However, what hit me today is that most people would have options if it were just impossible a certain day.  They would have people around that could care for their child.  The child might be in after-school.  And at 11, Janey would probably still be a bit young, but by 12 or so, she could come home alone even if really need be.  I had none of those options.  Nobody can watch Janey but Tony or me.  It's not that they wouldn't want to---it's that they honestly are not able to do it.  She is too tough.  The after school program has a ratio of students to kids that effectively excludes Janey (and I know the law might say they HAVE to provide for her, but what the law says and what can be done without a long, expensive fight are not the same thing).  She certainly can't stay alone, ever.  The only option would be having Tony come home early.  Because of all the time Janey spent in hospitals the past year, he doesn't exactly have a ton of sick leave left, so that is a total last resort.  And so---I couldn't make the appointment for today.

This is a little example of something that comes up over and over.  I appreciate people telling me to take care of myself.  It's a very good reminder that I should rest when I have a chance, and not feel guilty about it.  Sometimes, though, taking care of myself just isn't possible.  Even making the call today to get the appointment involved talking over Janey's screaming, as she was upset I was on the phone.  A lot of times feel like that.  If I take care of myself, I am not taking care of Janey.  As if to illustrate, as I tried to edit this paragraph to better say what I want to say, Janey asked me to cuddle her.  I tried briefly to put her off, and she started screaming, biting herself and by the time a minute was up, she was hysterical.  Ignoring her is not an option.

And I am one of the lucky ones.  I have a husband who does more than his fair share.  I have school, which allows me to nap when I haven't slept and to do dishes and laundry. There are people who are single parenting, or have adult children with autism no longer in school, or have other young children.  I won't say I don't know how they do it, because I hate that phrase.  But I know their lives are far harder than mine is.  And mine, to be honest, is fairly hard at times.

I asked on my Facebook page that is a companion to this blog about what respite people have.  I am going to write more about the answers (without names, of course!) in a future blog entry.  But I can already see that countries other than the US do a MUCH better job than we do here.  Here, it seems much depends on the state, or the county, or city, or even part of the city you live in.  It depends on figuring out the complicated systems.  And even with work and determination and knowledge, there is often just no help available.  That is a disgrace.  I am not political.  I am not blaming any party or ideology.  Autism doesn't play politics.  This is something that is going to affect EVERYONE.  If the rate of autism is what it's said to be, then there are going to be a very lot of families that just can't keep functioning, keep working, keep paying taxes, and it's pretty foolish to not spend the amount needed to give desperate families a little time for such luxuries as doctors appointments and sleep.

Autism and Appendicitis Pain - A Scary Combination

Almost everyone with a child with autism has noted that they express pain differently than other kids.  This might seem like an odd little quirk, but the events of the last month have shown me it's far from that.  Janey's reaction to the pain of appendicitis almost certainly contributed to her appendix rupturing, and her post-surgical pain reactions quite likely make the complications she experienced harder to treat.  If I can get one message across ever through this blog, this might be the one...DON'T ASSUME KIDS WITH AUTISM WILL SHOW PAIN IN A TYPICAL WAY!

I keep going back in my mind to the night we thought Janey was having a seizure and we called an ambulance.  Of course we don't know for sure, but Tony and I both now think that Janey's appendix burst that night.  She had a high fever, and we were taking turns checking on her all night.  When Tony checked on her in the wee hours of the morning, her arm was jerking over and over.  She was burning up with fever.  The EMTs quickly told us it wasn't a seizure when they arrived, and the ER staff felt the same way.  But it was something.  I think now it was a reaction to the terrible pain she must have felt as her appendix burst.

Neither Tony or I can remember for sure if the ER staff checked Janey's belly (I have learned "belly" is the technical terms for what we untechnically call "tummy") for pain.  Janey was not presenting like someone with appendicitis, and she wasn't being co-operative.  It took 6 people to get a throat culture on her.  The ER doctor assumed she had some kind of virus, and sent us home.  Her blood wasn't tested, but even if it had been, that might not have shed any light on things, as when it was tested the next night, her white count was normal.  The key here again was how she was showing pain.  If she had been screaming, or if she had been able to say "My tummy hurts!", I think some red flags would have gone up.

Even once Janey was admitted to the hospital, after we took her back the next night, she wasn't showing the pain you'd typically see in a child with an appendix that had already burst.  Tony and I could see she was far from herself.  The big thing we saw was that she wasn't moving.  She lay in the bed in a very, very fixed position.  I think moving was extremely painful for her, so she just didn't move.  I remember a group of doctors coming in and one of them shaking her bed a bit, and when she didn't react, saying something like "Well, she doesn't have peritonitis" (an inflammation of the wall of the abdomen) because she didn't react to the shaking.  She didn't react, I think, because she was determined not to move at all.  She had on her face what I call the stoic look.  It's a look I see a lot on her, a look where she seems to just be retreating into herself and doing everything not to let the outside world affect her.  It's not a look that betrays pain.

This is an example of how typical kids are asked to measure their pain.

Thankfully, so thankfully, the CAT scan done eventually on Janey showed her burst appendix clearly.  But her atypical reactions to pain were still an issue after the surgery.  At first, she was just given morphine around the clock, but the days went by, sometimes nurses would ask me "Do you think she's in pain?"  I knew we didn't want to give her too much morphine, that too much could slow her recovery.  But so often, I just didn't know, even myself, if she were in pain.  It was so hard to tell if she was crying because she hated the IVs, or was upset to be in the hospital in general, or if a video had scared her...it was so tricky.  We could ask her "Do you have a hurty feeling?" and she would echo it back "Do you have a hurty feeling?"  If we asked her to point to the hurty feeling, I think she often took that as a cue she was supposed to point to SOMETHING, and sometimes it was her belly but other times the pointing just seemed random.  Thinking back, I wish I'd worried less about how much morphine was getting and erred more on the side of assuming she was in pain.  But I wish even more she could express the pain in a way that was easier to understand.

I am glad Janey and all of us have only one appendix.  I will not be faced with this particular situation again.  But speaking to all the families of an autistic child still possessing an appendix, my advice would be this----If there's a chance it's appendicitis, push for imaging to be done.  Ultrasounds didn't show the problem for Janey; she needed a CAT scan for that, but that might just be her.  Make sure the medical professionals know that how much pain your child seems to be in should NOT be used to rule out appendicitis!  This would also apply, I am sure, to any other potentially serious cause of pain.  I hope none of you ever have to use this knowledge.  Best of health to all of you.

Drink, Janey, Drink! Part 10

I most sincerely  hope part 10 is the last part of this saga written in the hospital.  Janey is ready to go home except for one thing---her drinking.  Talking with her surgeon on Friday night, she explained her eating, although not good, is not nearly as crucial as making sure she drinks enough.  You can go a long, long time without eating---Janey went about 10 days without anything but IV fluids---but you can't go long at all without drinking.  And Janey is drinking very little.  She did  better today.  She had about 20 sips of water, and quite a few times, she let Tony fill a straw with lemonade and then put it in her mouth.  All together, her fluid input by mouth was maybe 4 to 6 ounces, and that was with extreme effort.  That isn't enough.

Part of why Janey isn't drinking is the thrush in her mouth.  All the bacteria pretty much in her digestive system was killed by 2 weeks of three strong antibiotics.  So yeast was able to take over.  She has a terrible diaper yeast diaper rash and the thrush is also yeast.  It probably hurts her to drink, although she does seem able to eat things that aren't super easy to eat, like salami and onions.  Part of it might just be that she is sick of us trying to force liquids on her, and she is sick of the whole hospital routine.  I think if she were home, she'd drink more, but Tony isn't as sure, and I trust his judgement.  He's the best at getting her to eat and drink.

There was talk today about putting her on something to stimulate her appetite, but we have learned that not much seems to happen  in hospitals on the weekends.  Despite that, I am hoping tomorrow might be the day we go home, but it would more likely be Monday.

How do I feel about going home?  Mixed feelings.   I am scared, partly.  I'm scared because I now see how very much I don't know about Janey's health, and how quickly and scarily things can go downhill.  How will I know how serious things are, if a top-notch hospital first saw her very early Wednesday morning and didn't finally realize she had a burst appendix until Friday afternoon?  They know a lot more than I do, and they didn't see what was happening until things became hugely serious, leading to a recovery fraught with complications.  That is Janey.  She is hard to read, I know, and I am realizing it goes further than I ever even knew.

I am scared also because Janey is still tough in the ways she was before this all happened.  She has been, ironically, easier in a behavioral way during the whole ordeal than she has in years, but of course not for good reasons.  She has been in pain, on morphine a lot, out of it.  Now, as she starts to come back into herself, we are again seeing some self-biting, a little aggression.   And we have no more help, no more solutions, than we ever did.  In fact, we are more sure than ever there really isn't any help out there.  I talked to two separate hospital social workers and the hospital OT who is the autism specialist, and neither of them knew of a single source of respite or a single program that would help Janey.  I am satisfied, if that is the word, that none exist.  Except school, and school for Janey is over until maybe summer school.  There are two weeks left of school in Boston, but Janey will be home.  She is still too sick for school.

The good feelings about going home are, well, that I will get part of my life back.  I got into gardening in a big way this year.  The garden has been left almost all to its own accords for weeks now.  I hope I can salvage some of it.  Janey may be easier to entertain at home, or not.  I will be able to spend more time with my boys, and see the cats, and just not be in a hospital all the time.

In many ways, I feel like I haven't really even fully processed what has happened.  It feels unreal in a lot of ways.  Of all the things I worried about with Janey, the idea of her becoming seriously sick was right up with the last of them.  Life likes to do that to people, and sometimes when I am feeling sorry for myself, which has happened a bit more lately, it feels like it likes to do it to me in particular.  I don't like that feeling.  I don't like feeling sorry for myself.  I am working to get that out of my head.  But it sneaks back now and then.  Maybe I should just take a while to feel it, and then move on, because that is all I can do.  It's all all of us can do.

Part 8----Healing Slowly

Today, the surgeon said Janey's bowel sounds were NORMAL---a wonderful thing to hear.  It was the first time in two weeks that has been the case.  It was also the first time we heard the work "discharge" in terms of her going home, not with a date attached, but she  said something like "Now we can think about discharge someday!"  We are feeling cautiously optimistic, although the surgeon made sure we understood it's still a long, long road to recovery, and Janey would not be herself for a long, long time.  She  said Janey has had one of the most serious conditions that a child patient can have in a hospital, in terms of length of stay and time to recover.  But we are finally talking recovery, not just crisis after crisis.

Maybe with the getting somewhat better, Janey is acting more unhappy.   When she was so sick she could barely move, she didn't seem as sad as she does now.  I can think of only two  times she has smiled since she's been in the hospital.  She spends a lot of time just saying "Mama!  Daddy!" and making a sad whining sound.  It's hard to hear.  The big challenge is knowing how much of this is pain.  I feel like she's shown us that she has a huge tolerance for pain, and doesn't show  it in normal ways.  So it's up to us to figure that out.  She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly.  We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.

We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent.  We  walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly.  Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms.  It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.

Eating is the other challenge.  Janey is finally on a non-restricted diet.  She  can eat anything she wants.  She is still getting the IV nutrition around the clock, but of course we want to get off that eventually.  We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks  from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her!  Eating is an area where I think a misunderstanding of autism is common.  Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one.  But she isn't.  She likes to eat a very lot, and eats a huge variety of foods.  As we have found to be the case here, everyone listened to what we said.  They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.

My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy.  Seeing her have trouble even walking, or seeing her not enjoy food--it's sad.  Those were her "normal" joys.  I have to admit I've had some moments of thinking this all just isn't fair.  Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons.  Wouldn't one or another be enough?  I try hard not to get discouraged, to feel put-upon, to cry much,  at least until I have a day alone, but at times, I am having a hard time with it all.

The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015.  It was a wonderful ceremony, and I am so proud of my newest high school graduate.  Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him.  It is not how I ever pictured his graduation night being, but life is often not what we pictured.  Watching him get his diploma was one of those moments when life was more than I ever expected.  And Janey is getting better.  She will get better.

Autism and the Misconception of the "Magic" Mental Disorder A Guest Post!

This is a guest post written by my older son William, a sophomore history major at Brandeis.  He's an amazing writer and researcher, and I am so proud of him.

As a millennial and the older brother of my sister Janey, I have surfed the internet countless times, and I often find myself drifting to articles about autism and other mental illnesses (if one classifies autism as a mental illness, a debate which I will not get into right now!), partly out of my own curiosity, and partly as a way to understand the difficulties that Janey faces. One thing that always strikes me is the amount of lists, sometimes poorly compiled, of famous individuals who people speculate had autism or other mental disorders. People say that Albert Einstein, Thomas Jefferson, Alan Turing, Vladimir Putin, William T. Sherman, and even Abraham Lincoln could have had or have autism. I am not sure if the people compiling these lists are psychiatrists, but they do have a goal in mind.

I think that it is out of a genuine compassionate desire that people say that truly remarkable individuals throughout history have had difficulties such as autism. Countless movies such as The Aviator, The Rain Man, and A Beautiful Mind attempt to chronicle remarkable individuals’ lives and document their struggles with mental illness. Even avenues such as YouTube seem to eschew this benign praise and recognition of remarkable people with mental differences, as evidenced by videos such as “Jake, Math Prodigy Proud of his Autism”. And while drawing a correlation between something like autism and outstanding achievement or skill tries to empower the autistic community and other communities scarred by prejudice against people with disabilities, the extent of these correlations in modern media obscure a critical struggle of people and families of people with disabilities: the agonizing pain of the disability itself.

Sure, I concede that perhaps Albert Einstein had autism, or that Howard Hughes had OCD, and these two disorders probably shaped the greatness they became know for. Yes, sometimes individuals with autism achieve great fame and recognition and thus empower other autistic individuals and their families. I know all of these things to be very true. But, pain is the hallmark of any disability, and autism is no exception. Howard Hughes may have created spectacular movies, but he also suffered enormous pain everyday from his brain’s unrelenting desire for cleanliness and compulsion. Similarly, autistic prodigies such as Daniel Tammet can learn the Icelandic language in a week, but suffer tremendous pain in what for “neurotypical people” are everyday social interactions.

I know I may come off as stiff, formal, and academic right now, and in many ways I am. But what I have said resonates deeply with me and how I view my sister Janey. When my mother tells other people that Janey has autism, I want people to realize that that means Janey lives with constant, unrelenting pain everyday. Things that most people take for granted such as speech are tremendously difficult for Janey, and thus she tries to cope through screaming agony or what a parent who has not experienced autism first-hand might call “misbehavior” or even more disparaging, “bad parenting” (PLEASE never say that last one to my mom!). Janey cannot express even a simple desire for something like food easily. Partly out of our human nature and our frustration for Janey, the entire Amara family is profoundly affected by the chronic disability that Janey has called autism. Yes, she shows a passion for music, but that doesn’t mean she’s playing Carnegie Hall on the weekends. If you take anything away from this entry, it’s this: when you learn my little sister Janey has autism, don’t let the first thought in your head be the misconception that Janey is a savant with almost magical abilities. Let the first thought be that Janey, like millions of other autistic people and other people with disabilities, suffers tremendous, chronic pain everyday from her disability and this pain has profoundly shaped her life and the lives of her loved ones.