Why I Do This

Recently, my son Freddy read one of my blog posts and didn't like it.  He felt one line in particular wasn't good, when I spoke of how Janey is one in a thousand in terms of her level of needs and disability.  I based that number on statistics I've read of kids at her IQ level and functioning level.  However, Freddy said I was trying to make people feel sorry for me.  That isn't what I was consciously aiming for, and I hope that isn't how it came across.  It kind of horrifies me to think of people feeling sorry for me.  I would hate to think people did.  This is partly just because I grew up in a time and place where you just didn't do that, and partly because I don't feel like I have a life people should feel sorry for.  I have enough to eat, a roof over my head, a husband I love, amazing sons, a daughter I longed for for years, hobbies and friends and interests and books and my garden and so many great things.  Like anyone, I have moments of self-pity, moments I do maybe want people to feel sorry for me, but that isn't why I write here.

But I was left thinking---why DO I write about how hard things can be with Janey and how little support there is out there, if not to make people feel sorry for me?  I had to search my soul a lot on that one.  The answer is---I write about it because it's an experience, a life, that I don't see written about elsewhere.  I don't see the media writing about kids like Janey, kids with the non-glamorous kind of low functioning autism.  Because of this, I also don't think there is a lot of awareness outside of the families with kids like Janey of how hard things can be and how little support there is out there.

There is a debate I've had with myself, and talked to others about---are those with the power to do something to help families like ours just ignoring our needs, or are they truly not aware of them?  I have to believe they aren't aware of them.  They could be excused in this.  Let me give  you an example.  Over and over, I've had people tell me about two different programs.  One is a program at the Boston Conservatory that provides music lessons for children with autism.  They hear about it and think "Wow!  That would be perfect for Janey!  She loves music and is very musical!"  Well, yes.  It would be perfect, except that the program requires that the child already be able to play an instrument and read music.  Janey certainly can't do either of those things.  The second example is a respite care house near here, a wonderful place we did take Janey to and get her accepted into it.  It would be wonderful, with Saturday respite and overnights and all.  However, when we took her there, we realized that the ratio of caregivers to children was no-where near what would be safe for Janey.  She requires a 1:1 ratio, for sure, sometimes even 2 adults to her if you really want to be safe, and they were more like 5 to 1 or 10 to 1.  Not possible.  So---to the outsider, it might seem there are programs and help that would work for Janey.  I want to explain to them that although these programs might be well-meant, and extremely helpful to some kids, they do us no good.

I talk about Janey's difficult behavior here for similar reasons.  I had no idea, no idea in the world, before having Janey, what it is like to have a child like her.  It's a bit of a hidden world.  There are several reasons for that.  One is that most of us living this life are too busy caring for our kids to really get out there and tell our stories.  Another is that we don't want to be negative about our kids.  We love our kids.  We love them so much it's hard to ever explain.  In a way, we love them so much we want to shelter them.  We don't want to let people know how hard it is to raise them.  And so, the stories that do come out are often horrible stories of mothers who just could no longer continue.  Or they are feel-good stories, stories of "cures".  Or they are tragic stories of children who wander away and drown, the stories that are far too common, especially in the summer.  I want to tell the story of a regular, ordinary family raising a child with low functioning autism, an intellectual disability and severe behavioral and self-injury issues.  I want to show that we aren't the others.  We are any family out there, who by the luck of the draw were dealt a tough hand in this one way.

I write because that is what I can do.  Others can do other things.  I am no good at going to rallies, at being a fierce advocate, at raising money, at starting foundations.  I can write fairly well, and I can do so in-between Janey's tantrums (I wrote this interrupted by at least 10 fits of fury from Janey, as she watched videos and became upset by them).  I write to tell our story, and the story of so many wonderful families I've met with children like Janey.  I write to tell people we exist, and to hope somehow to plant a seed in the mind of someone with the power to help us.

Four phrases that work lately!

It would seem to stand to reason that when we find something that works well with Janey, we'd use it over and over---that we would remember it.  But that's one of the tough things about autism in reality versus autism in theory.  In the middle of tantrums, screaming, lashing out, hours of crying, we tend to forget what has worked in the past, or if we remember, are just too burnt out to break old ways of doing things and insert the new ways.  As a way of reminding myself,  and to see if anyone else finds these useful, here's four phrases that have worked well lately.....

"Great job!"

Praise in general has almost been a breakthrough lately.  I don't think I ever realized how much Janey needs praise, and I would have said I praised her plenty.  But lately, I have just been laying the praise on extremely thickly, and it is amazingly motivating to her!  I'll find the smallest thing to praise, and will lavishly tell her what a great job she's done, give her high fives, thumbs up, A-Okay, the whole bit.  From putting her clothes in the hamper to not freaking out when we say no to asking nicely to take a ride---we can usually find something to praise.  I think Janey is partly just happy when we are happy, and if we are praising her, we use a happy and upbeat voice.  I've always heard you should praise kids at least 10 times more often than you criticize them, and with Janey, the 10 almost needs to be multiplied by 10---100 praises a day!


"Here's the plan for today"

This is something I really need to say every single morning.  I forget often that Janey wakes up unsure what the day will bring.  School is sometimes five days a week, sometimes four, sometimes not at all.  Daddy is home sometimes, not home sometimes, and William and Freddy are the same.  We might be going in the car a lot some days, and not at all other days.  When you really don't understand the patterns, I'm sure it's scary.  This morning, Janey woke up much earlier than she has been.  Usually, she's been waking up just a little before the bus comes for summer school, but today, there was a lot of spare morning time, and I could see her getting more and more nervous.  Finally, I remembered, and said "Here's the plan for today.  It's a school day.  The bus will come and take you to school.  Then you will come home, and then Daddy and William and Freddy will come home.  Daddy will take you for a ride in the car."  Almost instantly, Janey relaxed.  For some kids, visual calendars work, but for Janey, who I am realizing is a very good listener, just running down the day like that works best.


"Let me know when you decide"

There are times it feels like I spend half my life giving Janey choices.  She'll say "Want to watch Angelina!" and she always, always has a specific show in mind, but never is able to quite tell me which one.  I'll go through all the episodes, she'll not give me much of a hint what she wants, I'll put on the wrong one, she'll scream---it's not fun.  Or she'll open the fridge, wanting something to eat, and not finding it, and I'll go through everything I can think of to offer her.  What has worked lately, though, is to just say something like "I know you are hungry, but you're not telling me what you want.  Let me know when you decide" and then walking away.  Sometimes, that works in that Janey comes over and finds a way to tell me what she wants, but other times, it just works to break the cycle---Janey picks something on her own, or changes her mind and asks for something else more specific.  It seems like she likes having the ball in her court, and it's certainly more relaxing for me.



"I'll be so proud when you calm down!"

This is the phrase that's blown my mind lately a few times with effectiveness!  Janey has been screaming, lashing out, having a fit, and I have stepped back and said "I'll be so proud when you calm down!"  It's the kind of thing that if someone had suggested it to me, I'd have said (mentally) "Yeah, right.  THAT will work"  But it does, a lot of times.  I think it gives Janey a moment to back down and a simple goal to work on.  The SECOND she shows signs of calming, I give her a huge hug and tell her how proud I am.  Sometimes, she stays calm, and sometimes, I have to do it a few times, but even if it only works partially, I think it's a good exercise, because ultimately, the only way to really help Janey not lash out and scream is to have her figure out how to calm herself, on her own.  This way, I'm not telling her how to calm down, I'm just giving her a chance to do so.


Now, of course, lots of times none of these work.  And Janey has been in a good mood for a few weeks, so they might not work at all when her mood changes.  But while I am feeling like there are a few things that actually do work, I wanted to get them down on paper (or on computer, actually).  And here's a picture of Janey this morning, just after me being proud she calmed down!

The days and weeks and months and years

I'm feeling low tonight.   Janey has been fairly good.  She had a great week after restarting the medication, a honeymoon period we often see with something new with her.  Now, she is still fairly happy, but the screams and repetitive requests are sneaking back.  But it's more than right now.  It's how the days and weeks and months and years have been, and will be.

I'm thinking a lot lately about life getting away from me, about all the things I can't do.  I've been wanting to get up to Maine very much, where my parents live and where I grew up.  I want to see my parents and friends there, and just to be in coastal Maine in the summer---something that is one of the best things life on this planet has to offer.  But I can't.  I can barely go to the next room a lot of times.  Any time off Tony might have had for this summer was eaten up by Janey being in the hospital, and he has to work and I have to be here for Janey.  Taking her with me---I tried that last summer, and it didn't go well.  It's the opposite of a rest.  Summer school is a great respite for the time she's there, but then the day is over and again, I am basically trapped.  As is Tony.  There are so few places we can take Janey.  We don't get invited places much.  I can understand why.  If you host Janey once, that's probably about all you can take.  She isn't safe around small kids, she will get bored and scream after a short visit, she'll open your fridge and take things out, she'll find dangerous stuff you thought you had hidden well, she'll wet through her clothes onto your rugs or furniture---all things she's done.  And so we have become, over the years, more and more isolated.  I was thinking of summers past, with the boys.  We visited people a lot, we went to the town pool, we went to the beach, we went into the city.  We did a lot.  And now---we do nothing.

Most of the time, I do okay with doing nothing.  I'm pretty good at keeping myself entertained.  I have my garden, I have books, I have my kids and my husband, I have the Wild World of the Web, I have music, crafts, TV...I'm okay.  But lately, as I face down being 50 in the spring, I think about the things I can't do.  My parents are getting older, and I worry about them.  My nephew Zeben lives on the other side on the country, and I haven't seen him in years.  I have friends I haven't seen in years either, that aren't even that far away.  I am living a life that is smaller and smaller.

Maybe, lately it seems like there's a turn---a turn from thinking "This is how it is right now with Janey.  I can handle this on a temporary basis" to thinking "This is how it is for good.  This is the rest of my life."

This is a self-centered post.  I try not to be that way.  I try to focus on Janey.  But I'm failing at that today.  I'm thinking just about myself.  I would do anything for my children, all of them.  But somehow, I feel like who I am, the me that has the energy to be a good mother, to be creative and proactive and caring, is being chipped away at, by long days at home, long weeks of hoping Janey stays healthy and happy, long years filled with screaming and biting and progress that is so slow that it sometimes goes backwards.

Generally, I have little patience with myself for feeling this way.  There is something in me that tells me "You had kids.  There are no guarantees.  You are her mother, and you are lucky to have her.  You shouldn't go complaining about what life with her entails"   That is true.  But other times, I do a comparison of my life with Janey to the life with the probably 999 out of 1000 other kids, the kids that have friends, can go to camps and lessons and the homes of extended family, the kids that get older mentally, the kids that will someday have a job and maybe a family, the kids that might some day help their parents when the parents get old.  The kids I am lucky enough to have two of.  And in these darker moments, I admit to myself that although being a parent is tough for everyone, it's especially tough for our .1%.

I will get past this mood.  I don't have a choice.  I write about it, as I write about most things, for two reasons.  It helps me to write it out, to work out my feelings---that's the first reason.  The second reason is that I know there are others like me, and I want them to know they aren't alone.  We are out here.  We might never meet in person, for the reasons I talked about here, but it helps to know there are others living this life.

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.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.

On looking for positives, medication and feelings

Yesterday, the positives were a little easier to find.  They still took some mining, but not quite the all out intensive mile deep mining operation they had the few days before.

The change, and I hate to admit this was the change, was that we put Janey back on her medication.  Tony took her to her psychiatrist on Tuesday night, after things just getting close to completely unbearable with the screaming and aggression, and we got the okay to put her back on the two medications she'd been taking for a while (not the new one she took before getting sick)  I hated to do it.  But it's not about what I hate.  It's about Janey, and she certainly showed us that once she felt physically healthy again, she needed that medication.

What the medication does it make it possible to actually try other ways to help Janey---to calm her down just enough so that we can use other methods along with the medication to keep her happy.

Yesterday was a long day, still.  Janey, although screaming much less, still was doing her routine of asking to go to Maryellen's house, over and over.  Toward the end of the afternoon, she hit me when I said no.  She did this after seeming to think about it a moment, like she was thinking "Hmm, maybe a good slap in the face is what Mama needs to understand me.  I'll give it a try!"  There was that much of a delay.

I decided to try a little dialogue.  I said "Ask me again if we can go to Maryellen's house, and I will say no"  I didn't want to set her up to think I might say yes.  She asked again, and I said no, and then said immediately "Now you say 'I feel ANGRY, Mama'"  She said it, and I immediately did the whole positive routine---the high five, thumbs up, A-Okay, with a big hug and praise.  I then did the routine over again, about 10 times.  She loves routines and repeated speech, and she loves the praise bit, so she enjoyed it.

Then she surprised the heck out of me.  Around the 11th time we did the routine, instead of saying "Angry", she said "Sad"  I was truly taken aback.  I hugged her over and over and said "You feel angry AND sad!  Great job talking!"

I decided the time was ripe for some more feelings talking.  I had her guess my feelings, something that is very tough for her.  I made a very angry face, telling her beforehand I was going to, because I didn't want her to think I was really angry, and then I asked her what the face was.  I had to prompt her a lot to get her to say angry.  I did the same thing with sad.  Then happy, and she guessed happy much more easily.  In fact, she often said "happy" for sad or angry, which makes me wonder if she is confused about how people are feeling a lot of the time.

She gave me another surprise.  I asked her to make the faces.  She can't do angry or sad on command at all, although she can do happy---maybe because she WAS happy right then.  I was thinking she really didn't get making faces.  But then I asked her to do surprised.  I showed her a surprised face---no luck.  Then I said "Surprised faces have very wide open mouths.  Try surprised" and she did---perfectly.  I should have known.  She is so auditory.  A face that can be explained in words is so much easier for her to understand.  It made me feel a wave of sadness at how hard it must be to be that auditory but to have such a very hard time talking.

I hope today is again a calmer day.  It's been a long stretch here waiting for summer school to start.  It finally starts Monday, and I have to admit I'm looking forward to it like Christmas.  I kind of bet Janey is too.  We've had enough of each other, but I do hope we will end this long sickness/summer stretch on a slightly higher note.

Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

We were so hopeful a few weeks ago.  Janey was off all medication, and we really saw no change from when she was on it.  She was smiling a lot, and recovering slowly from her surgery and hospitalization.  But starting about a week ago, things went quite strongly downhill.  

The screaming has been the toughest thing.  Janey has always screamed off and on, but lately, it's a different kind of setup.  Things will seem calm for a few minutes, then she will ask for something she wants.  If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream.  Then she bites her arm, badly.  Then, sometimes, she tries to hit me, or anyone else who is around.  

In looking for positives, I must say these episodes are pretty quick.  They are super intense, but fast.  They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no.  And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting.  She does try, and she does calm down.  For a few minutes.  Until the next fit.

The screaming has essentially trapped us in the house.  We can't take Janey anyplace at all.  Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years.  It was always a positive routine for the two of them.  However, after they had picked out just a few items, Janey did her extreme screaming and arm biting.  They had to leave.  If you are thinking "Oh, lots of kids have tantrums in stores.  You just have to wait them out!" then you have never seen Janey's screams.  They are the screams of nightmares, and the arm biting is an added touch of horror.  Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.  

Yesterday was one of the longest days I've ever had.  Tony and both boys were at work.  Janey was not happy.  I would say she had a screaming episode about every 10 minutes, all day long.  I tried everything.  I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her.  She wanted to "Go to Maryellen's house!"  She loves Maryellen, but if we actually go there, she is happy for about 5 minutes.  And then, when we leave, on the way home, she again says "Go to Maryellen's house!"  It's just something to ask for.  It's not really what she wants.

Janey hasn't been to school for a long time, since late May.  That's probably one of her longest stretches in years without school.  Summer school starts Monday.  I am hopeful it will help, but not confident, really.

We started the medication again today.  We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.

It is getting harder and harder lately.  I have to admit it.  I sometimes truly feel scared, and I know I feel depressed.  I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her.  However, although I certainly like having someone to talk to, it isn't going to change the situation any.  I am more and more aware there is not any help but school.  It doesn't exist, not for kids like Janey.  

I will mine for positive at the end here.  I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing.  I think it came out not badly for a completely non-professional haircut.  Now a quick brush is all she needs.  It's little tiny things like that that are all we can really do to make our lives easier.  So here's a picture of Janey's new 'do!

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 again...it'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.

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!

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.