Saturday, July 4, 2015

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.

Thursday, July 2, 2015

Turning a negative ritual into a positive ritual

Whenever I write about something that has worked with Janey, I feel I have to say that I can't promise it will still work a day later, to say nothing of anything longer term than that.  But today's little triumph was very interesting to me, and I wanted to share it even if it doesn't last.

This all got started after I wrote a despairing post on my Facebook page that is a companion to this blog, about Janey screaming over and over and how it made it so impossible to get out of the house.  One of my great Facebook friends, Audrey, posted a link to this site, which talked about a method using a clicker of reinforcing good behaviors in lower functioning kids with autism.  The click clearly tells them they have done a good job, and they get a reinforcing treat for that, eventually not every single time, but after a certain number of good times.  The article was followed by some pretty extreme comments by people that didn't like this method at all, and felt it was treating the kids like "animals", but I didn't feel that way.  It seemed like a pretty mild and easy way to tell kids they were doing well, by making a sound that wasn't used for any other reason and then by reinforcing good behavior, like "quiet mouth" (not screaming)

However, the problem with this method for Janey is nothing really works as a positive reinforcer on a long term basis.  She doesn't have any food she always likes that can be easily given as a treat, she doesn't care about stickers or little toys or anything like that.  And I am not sure she'd get having to wait for more than one instance of good behavior for a treat.  Thinking about it, I realized her favorite reinforcer is just plain praise, given in a way that's part of a bit of a ritual.  Lately, when she's done something very good, I say "Great job!  High five!  Thumbs up!  A-OK!", and give her a high five, a thumbs up and a symbol of A-OK with my fingers.  She loves that.

So, I waited until a minute she wasn't screaming, and said "Great job not screaming!" Then I went through the whole routine.  I did that about 10 times in a row, keeping on saying what a great job she was doing not screaming.  And then I waited, and didn't have to wait long, for her to ask the question she asks a million times a day "Want to go to Maryellen's house?"  If I say no to this request to go to my friend's house, she screams.  So this time, when she asked it, I said "I'm going to say no, and if you don't scream, I will say 'Great job not screaming!' and give you a a high five and thumbs-up and A-OK!"  I then said "No, we can't go to Maryellen's house" and without any time in between for her to start screaming, immediately started the praise routine.  She looked surprised and kind of pleased.  I said "Let's try it again!  Ask again to go to Maryellen's house!" which she looked positively startled to hear, as usually I try to discourage that repeated question.  She asked again, and I again did the praise routine.  We did this over and over, each time leaving a little more time for her to maybe scream after I said no, but she didn't!

I was worried when she asked again a few hours later, it wouldn't work, but she asked with a look in her eyes that let me know she was waiting for the fun praise routine, and I gave it to her.  She did the same thing about 10 more times later in the day,  and every time, she didn't scream.  I felt a rare feeling of having actually accomplished something with her.  Maybe I've turned a question that had become a ritual of anger into a fun ritual.

Janey has been cheerier this afternoon than she has in a few days.  I think I might have finally found something she actually does get reinforced by, and it's not so much praise, although that's a part of it, as it is a set routine.  I have been letting her set the routines, and they were not routines I wanted.  I think I need to try to set the routines and rituals myself, at least some of the time, and try to make them positive ones.

We'll see if this keeps working!

Wednesday, July 1, 2015

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.

Friday, June 26, 2015

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.

Saturday, June 20, 2015

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.

Thursday, June 18, 2015

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 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.

Monday, June 15, 2015


Yes, indeed, after 18 days at Mass General Hospital for Children, Janey is finally home.  It's wonderful to have her here.  I'm not going to write much tonight, but I know in the coming days, weeks, months and probably years, I'll be reflecting on this whole experience.  For now, I mostly just want to write a few thank yous.

Janey, right before heading home!
First, to my family and friends for being so supportive during this whole ordeal.  It was wonderful to have everyone at the other end of a phone line or an internet connection.  I loved the cards and even a few packages sent to me by people I don't know in person but know through this blog and feel very close to!  My local friends were great, and I most certainly could not have gotten through the combination of Freddy's graduation week and the hospital stay without them.  William and Freddy held down the fort at home and visited Janey often, and were their usual terrific selves.

The main entrance to Mass General
Next, to all of the staff of Mass General that worked with Janey.  It so very much shows that the whole hospital has been trained in autism, but beyond that, that the hospital seems to have a special air about it.  We've spent time in other hospital, but there was something about this one---a feeling of caring on a personal level.  Janey's surgeon, Dr. Cassandra Kelleher, took so much time to talk with us and to explain everything, and to show she saw Janey not just as a case but as a child, one she cared about.  The nurses---wow!  So many thanks to Karen, Daisy, Katie, Jenny, Vicky...and all the rest whose names escape me just now but who I will always be grateful to.  I never once, not for a minute, felt like Janey's autism was something they found difficult to deal with.  They listened to what we said would work best with Janey and did everything they could to make every procedure and test as easy on her as possible.  Everyone else at the hospital---the people who brought the meals, the staff in the playroom, the OT who wrote an autism plan for Janey, the CT scan people---everyone was respectful and kind to Janey and to us.

Janey is nervous in the elevator, but Daddy is right there as always
My biggest thank you right now is to Tony, my husband.  I think sometimes I don't mention often enough here what an amazing father and husband he is.  This was one of the toughest times we've ever gone through in our lives, and he was so wonderful.  He put his stressful job totally aside and took the last two weeks to just be with Janey, at her side.  He let me keep my sanity, and his presence helped Janey stay calm.  She loves Daddy like no-one else on Earth.  It's not an easy gig, being Janey's father, but he excels at it.

So---now on to recovery at home.  With everyone's help, I think we will make it.