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.

Relentless Vigilance

One of my goals in writing this blog is to give a glimpse into what life is like with a child like Janey, a child with significant special needs.  It means a great deal to me that many people read this blog that don't have children like Janey, but want to understand her and others like her.  Some people also might read just because they are for whatever reason fascinated by autism, and I can understand that.  I used to read a lot of books about kids with autism, long before I ever had Janey.  I don't so much any more, probably because I read to get away from my own life a bit, but if I hadn't had Janey, I bet I still would.  I was thinking today, though, that there are two aspects of life with Janey and others like her that are almost impossible to explain with writing.  Of course, that never stopped me from trying!

Relentless     That's a harsh sounding word, but it's true. It doesn't end, this special needs parenting gig.  It never ends.  I admire and love teachers of kids with special needs.  They amaze me.  They teach Janey in ways I never could.  And part of that is that they get to go home at night.  I am glad they do.  They couldn't keep up that level of understanding and dedication all the time.  No-one can.  And that includes parents like myself.  I do the best I can, but at the end of some long days, I don't do much teaching or guidance or anything else but survival.  I do what it takes to get through the day---lots of videos, giving in to chips and ice cream, passing up opportunities to teach, playing the same song on repeat for hours just to be able to read a few more pages---all that.  Because there's no end of the day, really.  There is no weekends, no vacations, no retirement.  The job is forever.

You might say---that's true of any parent.  But in a lot of significant ways, it isn't.  My boys went to friend's houses, were in school activities, and by the time they were Janey's age, probably often preferred to have me a bit off-duty.  I never wasn't a parent, but there comes a point with most kids that you start being less hands on.  Now that they are 21 and 18, although of course I'll always be their mother, they are adults.  My active parenting with them is in many ways over.  With Janey, it will never be.

I imagine teachers and other professionals get very frustrated that their techniques and ideas and suggestions often don't get put in place once kids get home.  It's not that we don't want to, but imagine you were teaching a child like Janey around the clock, all week long, all month long, all year long, and you were going to be for the rest of your life.  I bet you would sometimes take the easy way out, be a bit of a slacker---not in ways that hurt or endanger the child, but in ways that let you make it to the next day.

Vigilant    Imagine how it was when your child was a toddler.  Imagine that they could only talk a little, not nearly enough to really tell you about any time you were apart, not nearly enough to explain medical symptoms, not nearly enough to reassure you that all is well in their world.  Then imagine putting them in a school bus with drivers you didn't really know, or having them in a daycare program you weren't completely confident was well supervised and staffed, or, being desperate for a night out, leaving them with a babysitter you found through an agency.  Imagine they somehow, although still being a toddler, looked much, much older, almost like an adult.  Imagine the fears you would have. Imagine how you might not take advantage of desperately needed possibilities for a break.  Then imagine that stage of life never ended.

I worry about Janey every single second she isn't right in front of Tony or the boys or me.  I worry because I've read some awful statistics about how vulnerable she is to abuse.  I worry because I have seen with my own eyes that not all programs for kids like her are anywhere near adequately staffed.  I worry because I took her to the emergency room of what was recently rated one of the best hospitals in the world and because she couldn't talk, because she was difficult to examine, no-one even touched her stomach, although doing so would have likely revealed her high fever was an indication her appendix had already burst.

If you've had a toddler, you know you would move heaven and earth to protect them.  Not that you wouldn't with any child---I would probably stare down a lion if it were trying to hurt William or Freddy.  But they can tell me if something is wrong.  They can speak up for themselves.  It isn't all up to me to make sure they are safe.  I'm able to give that responsibility to them, more each year.  But I can't with Janey.  I never will be able to.  I need to be vigilant, forever.  

Relentless vigilance.  That is it in a nutshell.  That is the part of life with a child with needs like Janey that really can't be fully explained.  It is why stress levels in parents like us are said to be much like those of soldiers in combat. But Janey, you are worth it, a million times over.  I will be relentlessly vigilant for you until my last breath.

The tension of a guard never fully let down

The last few weeks, I've been very tense.  It's strange, because, as I've written recently, Janey has overall been fairly calm.  She's had an increase in crying the last few days (jinxes are real, as all Red Sox fans know!), but my tension predated that behavior spike.  As I lie awake at night lately, I think "Why in the world are you so tense?  Why can't you relax?"  Last night, I answered myself.  I said "Think about the last eight years of your life"

In the last eight years---well.  Janey had her horrible regression and was diagnosed with autism.  We had countless days of all-day crying and screaming, many nights with no sleep at all.  The school our children had been attending for many years and the school I thought Janey would go to until age 22 decided they could no longer handle her level of disability.  After about six months at her new school, she went into a crisis and wound up first boarding at Children's Hospital for six unbearable days and then spending three weeks in a psychiatric hospital.  Then, the next year, after three days of increasingly severe symptoms, she was diagnosed with a burst appendix, had emergency surgery and then weeks and weeks in the hospital with complications.  Last January, a bad flu and pneumonia landed her back in the hospital for a few days.  Top that all with life's regular stresses---two sons in college, financial challenges, the everyday this and that and the other thing....well, let's say that if I wasn't tense and stressed, it would probably mean I hadn't been paying attention.

But why can't I relax on days when everything seems fine?  It's because my guard is never, ever fully down.  A day that seems just fine can turn on a dime.  I can get a call from school that Janey is sick, or having a behavioral crisis.  Janey can come home screaming and biting.  We can have one of our occasional sleepless nights.  Janey can get a fever, not be able to tell us why and end up suddenly critically ill.  We can have a day where she is as sunny as she can be suddenly turn, for reasons we don't understand, and just like that we are dealing with a level of chaos some people might not see in a lifetime.

Stress in parents like ourselves is something that is very hard to understand unless you've lived it.  It's the reason sometimes it might seem like we overact to small things.  It's the reason we are not always quick to be excited about what seems like good news.  It's the reason we are often not ready to try new things, go new places, take any risks.  It's the reason some days I have the near overwhelming urge to get into the car and drive---drive far away, away from my life.  I can't and won't ever do that, but if I did, the thing of it is that I am sure the stress would follow me.  If Janey someday lives away from home, I know from hearing about others with autistic kids living away from home that you still can't ever relax.  Things can fall apart fast, wherever your child is.

And so---what can we do?  We can be easy on ourselves.  We can accept that stress, tension, worry, all those, are always going to be part of our lives.  We can treat ourselves when we can to life's little pleasures, without an ounce of guilt.  We can drink our coffee, play our games of Scrabble, watch our mindless TV, read our escapist books.  We can call friends and laugh like crazy over the phone.  We can let sleeping dogs lie, let our child watch that video for the 100th time while we sit and do nothing.  We can stop thinking, pretending and having to present an image that our lives are more in control than they are.  We can accept that we have in some ways been dealt a challenging card, and admitting that doesn't mean we don't love our kids, that we aren't good parents.  We can support each other.  And we can keep on going.  That last one isn't a choice, but some days, it's all we can really do.

One year ago today

A year ago today, Janey had emergency surgery to remove her burst appendix.  The surgery was preceded by days of extreme sickness (the surgeon estimated it had been burst for 3 days before it was removed) and was followed by weeks of complications----a stay of three days in intensive care for breathing problems, another surgery to place tubes due to abscesses, being fed by TPN into her bloodstream for quite a while, much weight loss---it's hard to believe it all happened, looking back.

In a lot of ways, the health crisis changed how we look at life with Janey. To put it in a slangy way, we don't sweat the small stuff as much.  We focus more on making Janey's life happy and calm.  I think it's safe to say we decided to change our behaviors instead of trying to get her to change hers.  We did this at first because for several months, she was still very affected by the hospital stay.  She was, as the surgeon told us she would be, debilitated.  It was important to focus on very basic things, like making sure she ate and drank.  

To our surprise, life with Janey got easier, overall, when we tried less to change her and more to change ourselves.  That's not why we did it, but we realized that if she's happy, everyone is happy.  If we keep her calm, we all can live our lives a bit more.  

Of course, there's no miracle change.  There are still days when Janey screams a very, lot, cries constantly, gets frantic for reasons we don't understand.  But there are less of them, and they feel less desperate.  They don't seem to last as long or usually be as intense.

In the hospital, Janey watched "The Spongebob Squarepants Movie" about 50 times.  Since then, she's watched it maybe 100 more times.  That's a good example of a change we've made.  I used to always try to get her to watch new things, or, heaven forbid, not watch anything when watching TV was what she wanted.  Now, we let her watch what she wants, when she wants.  She doesn't watch more TV, I wouldn't say, but we relax and let her enjoy it, and enjoy the time it gives us.  Believe me, that was a breakthrough for me.  I always pictured myself with kids that shunned TV and instead played with wooden organic toys and begged me to let them get one more library book.  But that was me---my dream, my vision of parenthood.  

Janey sleeps every night with a pillow covered with a flannel pillowcase she got in the hospital.  I looked up just now to see the name of the charity that makes pillowcases for children's hospitals---it's Ryan's Case for Smiles.  Janey has never been attached to any object like she is to that pillowcase.  She looks for it the minute she comes in the house.  That's just one example of all the kindnesses we were shown at Mass General Hospital.  If you have to have a child spend almost a month in the hospital, that is the place to be.

I feel like this post is disjointed, and that is partly because my mind keeps drifting back to a year ago.  Of all the things I ever worried about with Janey, a severe physical health crisis was about the last.  I wish it all hadn't happened, of course, but it did, and the perspective it gave me has changed me.  Our kids, all our kids, are precious.  It sounds like a sappy card, but I realize you can't take a single day for granted.  Janey, I am so glad you are with us today.

Your child was newly diagnosed with autism? Maybe don't read this...

For some reason, I started looking today at various fact and advice sites for those with a child newly diagnosed with autism.  It was strange---although it's been 8 years, I still felt panicky reading the information there, feeling like I wasn't up to the challenge and I was going to do everything wrong.  It took me back, and in a bad way.  So I thought---what would I say?  What would I advice?  And then realized what I'd have to say might not be the best thing for someone to read that was new at all of this.  Maybe the busy lists, the lists of tons of people to call or books to read or therapies to research are the best way to handle the early days.  Maybe it's better not to think too much, and rather to take action.  But here's what I'd say, and if you really are in the early days of a diagnosis, think twice before you read this, because I'm going to be brutally honest with my five talking points.  Not brutally negative, but brutally honest.

1.  There is no way to say right now how this will all play out. Your child might be one of the super-achievers.  There might be a day, years from now, that they pull down all As from a fancy college while carrying a part time job and having good friends.  Or...they might never progress much at all.  They might even regress some.  They might never learn much more than they have learned right now.  I had one of each of those.  The very high achieving child was probably misdiagnosed, but then again, maybe your child was too, or maybe mine wasn't, and was just someone destined to progress.  Don't let anyone tell you what your child will do, although knowing that you don't know is a mixed blessing.  I read a book once about girls with autism that said something along the lines of "Girls with autism have an incredibly bright future ahead!"  That line makes me mad every time I think of it, because for many girls (and boys), it's a lie.

2.  Your life is not going to be what you expected.  I'm not going all trip to Holland here.  It's not going to necessarily be better than you expected, but then again, it might be not worse.  It's just not going to be the life you pictured.  No life ever is, but yours...more than most.  You will live a life of IEP meetings and meltdowns and special interests and sleepless nights and desperation and pride and laughing and crying.  Not all at once, and not all of those maybe, but you'll have highs and lows higher and lower than most.  You've been taken off the mainstream track and moved to a different one, one that isn't going to take you where you expected.

3.  Everyone will tell you that you are going to have to be an advocate for your child.  Don't let that terrify you.  It will come naturally.  Not everything has to be a fight.  You will be pleasantly surprised how many people truly want to help you, and are kind beyond anything they need to be.  If you don't feel up to a battle over some issue, it might be that issue isn't worth battling over.  I am the least confrontational person I know, pretty much, but even I find when the issue is important enough, I can do quite a battle, and you will too.  The one area I do want to say you MUST ALWAYS SPEAK UP is for medical issues.  If you KNOW your child is very sick, and they aren't getting the treatment they need because they can't communicate well, SCREAM if you have to.  Your child's life may depend on it, as Janey's life did with her appendix crisis.

4.  Figure out a way, some way, to enjoy yourself even if you can't leave the house.  Because a lot of times, you aren't going to be able to.  Finding respite is near impossible, at least in the United States.  So you might need to mentally escape when you can't physically escape.  Get into something like online games or gardening or knitting or sewing or working out to music or whatever floats your boat, but make it something you can pick up and do whenever you have a moment.

5.  Enjoy the good moments with your child when you can.  There are going to be very tough times, but believe me, there's going to be a lot of fun, too.  There's going to be times your child does something you never thought they could, or says something incredibly funny (whatever way they communicate) or gets so into a song or a video or a book they laugh so hard and dance so hard that you can't even help but laugh and dance along.  Don't feel like you have to have "normal" fun to have fun.  Don't ever feel like the things that delight your child should have to be "typical".  Typical is overrated.

I said five things, but here's a sixth.  It gets easier.  It really does.  It might get tougher before it gets easier, and it might swing back to tough for periods of time after it gets easier, but there is going to come a day when life feels under control again.  When the nights are very, very long, when you have been bitten and hit, when you are cleaning up a diaper mess for the hundredth time, when you want to fling something at the TV when they say it's a snow day, when you despair----please remember it does get easier, and feel free to post a cry for support on the Facebook page that goes with this blog.  We have all been there.  We have your back.  I am thinking of you, about to start on this journey, and I send my love.

Goodbye to 2015

In some ways, I'm fairly happy to say goodbye to 2015.  However, that's mostly based on just one month of it, from mid May until mid June, with Janey's burst appendix and long hospitalization.  The rest of the year was...fair to middling.  In some ways, if you leave out the horrible month, it wasn't a bad year.  Thinking back, most of the big changes were changes in our attitudes and approaches to Janey, not really external changes.

After Janey's time in the hospital, she was very weak.  The most important thing was to get her healthy, get her eating and drinking and moving around and well.  When that happens, when you are stripped down to the basics of life, I think some things become clear.  We were not thinking about things like establishing firm routines, or working on communication, or building skills.  We were working on keeping Janey from winding up back in the hospital.  We were helping her gain back the huge amount of weight she'd lost.  We were watching her for infections.  The autism became an footnote, a minor concern.

Keeping Janey happy, helping her heal, we did all we could to minimize the time that Janey spent crying or upset.  And we realized something---that if we kept Janey happy as much as possible, life was easier for all of us.  If we did the little things she liked, we spent far less time trying to calm her down, trying to fix an hour or day that had gone awry.  With that realization, the last half of 2015 featured a lot of good days.

It seems so simple---keep her happy.  But it took a change in our attitude.  It wasn't like we didn't always want her to be happy, but until this year, I think we felt that it was important to make our stands, to not "give in" whenever possible. We aren't terribly strict parents, but we were always fairly firm about no meaning no, about keeping things fair and not bending our plans or routines because of tantrums or anger or begging.  And to some extent, that is how we were parenting Janey.  It had worked pretty well with the boys.  But, as we came to realize, Janey is different.

And so, we say yes to Janey much more often than no, now.  We do things pre-emptively.  If she wants a car ride, unless it's impossible, we give her one.  If she doesn't like music that is playing, we change it.  If she asks for something to eat, and we have the food, we make it.  If she wants a shower, even though she's just had a shower, I give her one.  If she wants us to snuggle her, we snuggle her.

Of course, if what Janey wants is to bite us, or throw food on the floor, or break things, or not wear shoes to school, or any number of other things along those lines, we are still firm.  But we've realized---if we start with "yes" as our default answer to the limited amount of wants and wishes Janey can express, there is far less biting or breaking or throwing.

The parenting books, the common wisdom---those would tell you that "giving in" to a child, doing what they want, will create a brat.  And I think that is true, with a typical child.  But Janey isn't typical.  She isn't able to think about WHY we say no or yes.  She doesn't understand the reasons for no, and she doesn't understand the reasons for yes, either.  So she doesn't project, doesn't think "Gee, I can get away with anything!  I just have to ask!"  any more than saying no makes her think "Wow, they really mean it!  I might as well realize I'm just not going to get what I want by begging!"  She understands happy and she understands sad, and she likes happy better.  We like her happy better.  It's pretty much as simple as that.

So---I will sign off for 2015.  I hope that the new year brings all of you happiness.  I'm off to drink a cup of kindness yet, for Auld Lang Syne.  I'll raise a glass to all of you, with love.

First week of summer school

I can't begin to say how happy I was to have Janey back in school, summer school.  I hope I don't sound like the world's worst mother saying that, but boy, do I love that school bus showing up and taking her off to school land for a while.  Luckily, I think Janey feels the same way.  She was more than ready to go to school again, after a long time off.  Her school year ended abruptly in May, with a bang and a burst---appendix, that is---and she was getting bored.

Summer school this year is only 4 days a week, so Janey was home today.  I forgot to explain to her in the morning why she wasn't at school.  She got angrier all day long, after about a week of model behavior, and finally, I realized that as happens so often, she had somehow counted the days and felt she should be in school.  She of course can't express this, and I feel stupid that I don't always remember to talk to her about it, especially after how Veterans Day last year affected her.   Around two, I finally said "I know you think there should be school today.  But summertime school is only 4 days a week.  On Fridays, you will be home with Mama"  Almost right away, she calmed down.

It's times like this I wish so much that Janey could communicate more.  I wish I knew how to unlock her voice, or if it is unlockable.  Her talking ebbs and flows, but overall, it never gets better.  She talks about as well as she did at three, and not as well as she did before her regression, when she was two.  Sometimes, that just doesn't make sense to me.  I know she knows more words than she did then.  She understands so much, and shows her understanding by following complex directions.  I can say something to her like "if you want to go in the car, go get your shoes and then bring me the phone so I can call Daddy"  She'll do all that with ease, and even directions with several more steps than that.  When she is in the mood and I give her pointing vocabulary tests, where she can pick from four pictures, she knows all kinds of words like "castle", "raccoon", "padlock", "helicopter"---to name a few I can remember.  She doesn't say them, but she knows them.  And she has not much trouble pronouncing words.  So why does this never translate into more talking?

For some kids like Janey, speech apps on the iPad help.  They don't, with Janey.  She hates them, every single time I've tried them or anyone else has.   Because the iPad talking is indeed talking, the same issues come up that do with verbal talking.  She either can't form the thoughts she has into words, to enter into a keyboard or say out loud, or she doesn't want to.  It seems sometimes like every word she says costs her a great deal of money, and she wants to save her money.  But this leaves us so often with no way to know what she wants, what is upsetting her, what is making her happy, even.

On days like this, when Janey and I are alone all day with nothing to do, I try hard to sort of shadow her, to try to figure out what she likes to do.  I sat with her for a long time today as she watched TV.  She knows a little how to work the Amazon Fire TV box that lets her watch shows on streaming services, but she needs help with the passcode sometimes (which we need, or she buys shows!)  Instead of trying to get a little done in between her need to change shows, I sat with her and immediately responded to anything she wanted done.  What she wanted was to watch the beginning of a certain episode of "Word World" over and over and over.  It was one where the word friends played baseball.  I have no idea what the appeal is, but there must be something in it she likes.  Usually, I try to encourage her to view new episodes of shows she likes, or new shows.  She resists this a great deal.  There must be some reason certain episodes appeal to her so much, and it's another mystery to add to the many she presents to us.

I tried at points today to get Janey to branch out with activities, but as she gets older, she seems to have less interest in a lot of things.  She used to love to be in the wading pool, but today, despite me giving her several new pool toys and trying my damnedest, she would stay in it only for ten minutes or so.  I tried reading to her over and over---she politely closed the books.  I pulled out her toys and knocked myself out trying to get her interested, and she gently took them and put them away.  What she likes lately is two things---watching videos and going places in the car while listening to music.  That is another reason I love having her go to school.  I know she's at least doing something different there.

I'm rambling on here a bit.  It's how my mind feels lately.  I feel out of new ideas about Janey, and fairly low on energy.  Her hospitalization took a lot out of her, and us.  I think for now we are so happy to have her healthy that we have a slightly different perspective on things than we did before. We are happy to have her here with us, and we want her to have a life she enjoys.  There is so much about her we don't understand and can't control, and the older she gets, the more likely it seems she is becoming the person she is going to be for life.  We need to find a way to let her live the best life she can while we also try to live the best lives we can.  That's going to be a challenge, but we are happy to have her with us to work on that challenge.

Tough decisions regarding medication.

Today, we took Janey for her follow-up appointment with the surgeon.  It feel odd to be back at the hospital, to be at a place that had been almost home for 18 days and that we hadn't seen since and might (hopefully) not have to see again for a while.  It was a bit overwhelming.  Janey's appointment was good.  She's not all the way recovered, and her weight is a concern---she's lost about 20 pounds from her baseline when this whole bit started---but she is on her way.  It was nice to see the surgeon, and have her see Janey again.  I felt once again very glad we had chosen Mass General for her care.

The tough part lately has not been Janey's physical health, but some decisions we need to make about her autism, specifically, decisions about her medication.  I haven't written about this on here before now because I've been waiting to see how things were playing out.  Janey has been off any psychiatric medication for over a month now, from the time she had her surgery.  It started because she couldn't have anything by mouth for a while, and the medication wasn't available in IV form.  So we stopped it then because we had to.  However, we weren't eager to start it again at that point.  Janey was still recovering from a hugely major medical crisis, and she didn't have the energy to have any kind of behaviors that would require medication.  So---we decided to wait.

The strange thing was, for the first month anyway, that it made absolutely no difference.  Janey's negative behaviors, once she recovered enough to show her behaviors, was no different on or off the medication.  She still bit her arm, she still got upset easily and was obsessive, but it wasn't worse. And more importantly, her POSITIVE behaviors were better.  She seemed calmer, more connected.  She had a lot of wonderful smiles.  She looked at us in a way we hadn't seen in years.  It is hard to describe, but she just seemed more herself.  Both Tony and I remarked we saw a Janey we hadn't seen since she was 2, a pre-autism Janey.  And so we weren't in any hurry to put her back on medication.

The last few days, though, we aren't so sure.  Yesterday, especially, was a hugely difficult day.  Janey spent most of the day in a fury over one thing or another.  She obsessively asked "Go to Maryellen's house?", my friend Maryellen's house she loves to visit.  However, the day before, we had gone there, and once there, Janey wasn't any happier there, and I am pretty sure she again wouldn't have been if I had actually been able to take her.  It was just an obsession of Janey's.  When she wasn't saying that, she was saying "Snuggle on Mama's bed!", which actually meant on her bed, and "Go under the covers!", which means, don't just sit there half on the bed, but act like we are about to go to sleep, do nothing else but lie there.  Which is fine at bedtime, but lately, since coming home, it's what Janey wants to do about half the day or more.

When we say no to Janey, she immediately, violently, gets mad.  Last night, she asked Tony for bacon, at around 10 pm.  He said no, and she screamed, screamed as loudly as you can imagine, "NO!  NO!  NO NO NO NO NO!!!"

Today, while waiting to see the surgeon, Janey got upset in the waiting room, and started screaming that piercing scream and then smashing her head with her fists, over and over and over.  And I thought---yeah, we are going to have to go back on medication.  But once I had a minute to think, I thought---were things better then?  She was on medication when we had the awful stay at Children's and then the 19 days at Bradley Hospital.  She's been on medication for the last 5 years.  Has it helped?  Sometimes it seems like it has, but it's hard to say.  It's really hard to say.

I think when I started to really question the whole idea of medication was after we saw the Lurie Center, when I started to realize that there was nothing being offered to Janey at all BUT medication, and when they started her on a NEW medication, and we were not given clear instructions on taking her off the old one that was similar.  Or later, when in talking with people at Mass General, we realized Janey was getting a time release version of her other medication, but since we crush the pills and mix them with water, she probably was getting the time release dose all at once.  Both times made me feel like we are playing with fire, that we aren't being instructed clearly enough about these hard core medications, that perhaps we should not be giving them to her because of that.

With a child like Janey, there is not much doctors or psychiatrists can do, I'm realizing.  In today's society, they have no respite, no therapies, no groups, nothing really to offer to a child with severe autism and a fairly severe intellectual disability.  So---they offer medication.  It's what they can do, it's easy to do, and they want to help, they really do want to help.  But does it help?  I don't know.

So we are left with a decision.  Do we put Janey back on medication or not?  Does it help anything?  Are the calmer times that happen off and on while she takes it just change, just times she would be calmer anyway?  Is it worth the potential side effects?  Can we figure out other ways to help her?  Can anyone?  I don't know.  We will see.  It's going to be a tough decision to make.

The long recovery, the school visit, and loneliness at the edge of the spectrum

Janey is gradually, gradually getting better.  She spends less of her day in bed now, and walks much less hunched over.  She is starting to eat a little bit better, and we don't worry all day quite as much about her drinking enough.  But it's SLOW.  I'm very glad the surgeon warned us it would be, or we would be much more worried.

Yesterday, we went to visit Janey's classroom, to say goodbye to her teacher and pick up her stuff.  It was the last full day of the school year, although of course Janey's school year ended abruptly a month ago.  Janey was very happy to see everyone!  It took her a minute to take in that we were actually in her room, but once she did, she was all smiles.  It was wonderful to see.  Wonderful both ways---to see Janey happy, and to see her teacher and all the therapists and staff and aides that saw her so engaged with her, so happy to see her.  They all seemed to have a special thing they did with her, some kind of high five or dance or saying.  It was truly special to see.  We will miss Janey's teacher, Miss Jenn.  She was terrific with Janey, and so caring.  It was not an easy year for Janey, and she was with us every step of the way.

One thing that was interesting was how little attention Janey paid to the other kids.  They were happy to see her, and many of them ran over to hug her.  They had made her cards, which were great (and which made me see how Janey seems like the only kid in her class that can't draw or write)  She seemed to barely notice them.  I wonder if this is because many of them seem to operate at a lot higher level than her, or if it's just how Janey is.

Later yesterday, we visited with a woman and her daughter who we'd met because Freddy is friends with a son his age in the family.  The daughter is on the spectrum, although on the far other end from Janey.  Janey again paid not much attention to the girl.

Some day, I'd like to do a tour and meet in person many of the people I've met through this blog, to talk with them (wouldn't that be wonderful!) and to meet their daughters.  I feel like I've never met another family in person with a daughter like Janey.  It's a bit of a lonely feeling, that yesterday pounded home to me.  The autistic spectrum is very wide, and the edges of it are not as populated, especially's Janey's end, I am finding.

Another feeling hit me yesterday, a bit more positive one.  I realized how when I'm not around other kids, Janey just seems like Janey.  I don't spend a lot of time comparing her to where she "should" be.  It doesn't seem especially strange to me that she doesn't talk much, or that she screams a lot, or that she isn't toilet trained, that she can't read or write or draw.  Of course, I wish she could do those things, but that's not Janey.  Unless I'm face to face with others that can do those things, even though they have the same diagnosis as Janey, it just seems like---well, Janey is Janey.  I guess that's autism acceptance, in a way.  It doesn't mean that I don't feel sad that Janey's life is and will be very limited by what she can't do, but I don't spend a lot of time thinking how different she is from others.

The part that does make me angry is how there is so much less help for kids like Janey than there is for kids with less severe autism.  There is nothing for Janey except school, nothing.  No camps, no respite, no social skills groups, no friends, no lessons, nothing.  There is nothing.  That has been confirmed by talking with three social workers specializing in kids like Janey in the last month.  And it's why I am so grateful for her school.  I felt at home there yesterday---not quite as at home as I used to at her old school, but at home.  I felt like it was a place where Janey was accepted and loved. And there aren't that many places like that.  So thank you, Boston Public Schools.  You don't get enough love, but for our family, you've been wonderful.

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

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.