Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

The Sticker Book

Recently, after being amazed by seeing Janey be tested as part of a research study, and after some surprising, great talking she's done, several thoughts are in my mind constantly.  One is how bored she might be.  Because her talking is limited, I think we often limit what we talk to her about.  Quite frankly, it can be hard to think of conversational topics when your conversation partner rarely talks back or brings up anything new.  So I've also been thinking about ways to expand her knowledge, to give her new ideas and facts and interests.

Puffy stickers

Janey is absolutely an auditory learner.  That seems to be rarer in autism than being a visual learner.  So much of what I read as advice for teaching kids like Janey assumes they are visual learners---picture schedules, communication devices that use pictures, choice boards with pictures---all that.  Janey prefers words.  She's made this quite plain, as plain as she is able.  I am the one that needs to figure out how to help her learn in an auditory way.

So---my inspiration for making a sticker book seems strange.  What are stickers if not little pictures? But when I had the idea of the book, I had a feeling I'd hit on something.  The trick is---the stickers are for ME.  I'm the one that loves them, I'm the one that learns well visually.  I'm the one that needs new ideas for talking.

And I love stickers.  There, I've admitted it---I'm a middle aged woman who adores stickers.  I always have.  So the idea of making a huge sticker book for Janey appealed to me very much.

Some Kawaii stickers!

I got started by ordering a sketch pad and a couple lots of stickers from Amazon.  I ordered a big pack of puffy stickers---sheet after sheet of different kinds, and a pack of stickers of the kind you put on cars, all assorted.  Then on Etsy I discovered something called Kawaii stickers.  I thought at first Kawaii was a brand, but it's actually Japanese for a concept much like "cute".  There are a HUGE amount of kinds of Kawaii stickers---I've since found a few online stores that sell them very cheaply, and I don't think I could ever run out of different types.

An animal themed page

I had a lot of fun sticking all the stickers I had so far in the book.  And then I gave it a try...I showed the book to Janey, picked a page at random and then a sticker at random, and showed it to her, and talked about it.  Talked about it in the way we've come to figure out she likes best---in a silly and highly enthusiastic way.  Several of her breakthrough sentences lately have been ones asking us to play various verbal games with her---pretending to sneeze, making high squeaky "monkey" noises, things like that.  The sticker I first hit on was a ghost.  I said something like "There's a ghost!  It goes WHOOOO HOOOO in such a creepy way!  See that silly ghost?"

A little bit edgy and weird for my near teen

Janey loved it.  We played with ghost noises for quite a while.  Then I switched pages and asked her to touch the sticker she wanted to talk about.  We were in a page of Shopkins stickers, and she found a picture of corn with eyes.  I talked that up a lot "That's so silly!  Corn never has eyes!  We eat corn!  It comes in cobs.  You like corn.  Let's find some more corn pictures!"  We found some more on that page, and some on other pages, and that led to other topics---one of the corn pictures featured a rainbow, and I started talking about colors, one had corn next to some other food, holding hands, and I talked about how they were friends...things like that.  Before I knew it, half an hour had gone by---a full and fun half hour.

Camping, cooking and Frozen

Since then, I've pulled out the sticker book every day, and Janey seems to be looking forward to it.  She finds her favorite stickers quickly, but is also open to new stickers.  I feel like I've increased how interesting and varied our talking time together is by a huge amount.  And...I have an excuse to look for stickers to add!

In the broader picture, the whole sticker book idea brings up a couple lessons I've learned along the way.  One is that Janey knows if we are enjoying what we are doing and are engaged in it.  I'm going to stick to a way of teaching that I like much more than one I don't, and with Janey's extreme ability to read tones of voice, she picks up on the fact I'm having fun, and she joins in.  Another lesson goes along with that well-used phrase "You've met one kid  with autism, you've met one kid with autism" All the visual schedules and picture-based AAC programs in the world don't change the fact that Janey learns by hearing.  And that I don't, and that I need to figure out how to bridge that gap, how to respect what she is learning every day a little more how to tell us.  If that allows me to indulge in a long-buried sticker passion---well, all the better.

"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

Talking about angry

I had a feeling yesterday afternoon would be a tough one.  Tony had a doctor's appointment after work, and so was going to be a few hours late coming home.  Janey doesn't care for that---not at all.  We've lately had some pretty good afternoons, but we do so by following a routine that is quite unchanging, right down to what I say when.  She gets off the bus, I tell her I missed her a million and was crying seven times for her.  I've said that every day for many years, and if I don't say it, she is not pleased.  Then she takes off her shoes and flings herself on her bed, and hugs Special Pillow for a bit, then asks for cheese.  I get it, cutting her slices.  She then asks for salami, and then does her own hunt to see what else there is.  I try to have a jar of salsa around, for a lower calorie treat.  She eats that, and then wants to snuggle again for a bit, then she asks for videos.  Sometimes she tells me which one she wants, something she wants me to browse.  Either way, we watch them until it's time for Daddy to get home, around 4:45.

A sign that would do no good

I told Janey early on that Daddy was going to be late.  She didn't react, but like clockwork, at 4:40 she started looking for him.  I reminded her he wasn't going to get home at his regular time.  Once it became apparent I was telling the truth, she started to scream.  And then screaming got loud, fast.  I ignored it as long as I could, but then, I asked her to stop.  She didn't, and I asked more firmly.  She didn't again, and I suggested she go in the "screaming room", a long ago strategy to try to contain her screaming to one room, the bathroom.  I went with her.

In the bathroom, after more screaming, I did what we so often do---thought up a song on the fly.  It was more of a chant, really.  It went "Janey is ANGRY because Daddy is LATE!"  I clapped on the "angry" and the "late".  Janey started repeating it near immediately, and we chanted it probably a hundred times.

How I must have sounded to Janey

Then she surprised me.  I did what I often do after she gets a sentence down.  I said the "Janey is angry because..." part and left the ending out, expecting her to say "Daddy is late".  Instead, she said "Mama said NO!"  She said the "no" in a (I hope) very overstatedly nasty voice, and while saying it, shook her finger in my face.

Well, I hope I don't sound like that when I say no, and I don't THINK I usually shake my finger in her face, but I can't say it's impossible....And I thought about it.  A little before Janey started screaming, I did say no to her.  She asked for more cheese.  We are trying to think about calories a bit more with her, and she'd already had a good deal to eat, so I said I didn't think we needed more cheese right then.  She didn't react much at the time, but I guess it stayed in her mind.  Or perhaps she was referring to when I told her not to scream, after she had started the screaming.  Either way, I made her angry and she let me know.

I've been working on getting Janey to verbalize her feelings, or on a more basic level, to recognize what she feels as angry or sad or hungry or happy or surprised, every chance I get.  I feel like the more she understands what her feeling are, the more she can tell us what she is feeling.  Yesterday felt like a bit of a breakthrough.  Maybe it wasn't the answer I wanted, but she told me that I made her angry. I am going to look at how I say "no".  There will still of course be times I have to say it, but I'll try to say it in a kinder and softer way.

After the screaming talk, the afternoon actually went well.  Janey calmed down a huge amount, and we watched videos and had a good time.  Just before Tony got home, one of her videos talked about having a cold and sneezing, and Janey started one of her favorite games lately, pretending to sneeze.  We do a lot of pretending like that---pretending to sleep, or cry, or get angry, or cough.  It seems like a way to work on feeling and symptoms and so on without actually having to get angry or sick.  I'm pleased that Janey seems to get the concept of pretending, at least in a basic way.  We pretended to sneeze back and forth for a good ten minutes, and then Daddy was home at last.  And I took full advantage and closed myself up and read for a long time.  Not a bad afternoon, overall.

When Janey got studied and blew our minds

Janey is part of a study of autism at Boston University.  They are interested in kids who are low verbal---who talk but don't talk a lot, and she fits right into that category.  We first started with them just right before all hell started breaking loose, when Janey went to Bradley Hospital and then in fairly short order had her appendix burst, so quite a while went by without us going to the study.  I called them a few months ago and got us started again, and we've been twice since then.

Dedicated parking!

BU has a great setup for the study.  They have a dedicated area, which has been designed to be very autism-friendly.  It's calm feeling, there are toys and books in the waiting area Janey actually has an interest in, they have a dedicated parking space for participants (a BIG deal in the city!) and most of all, everyone we have met working on testing or on interviewing parents seems to be absolutely wonderful at what they do.

Janey seems to love going to the study.  She's never one to have much trouble separating from us, and she goes off happily with the tester while Tony and I get interviewed about her by the head of the study.  The few times we went a few years ago, and the first time we went this go-round, the interviewing lasted as long as Janey's testing, but this last time, we finished the interview and so got an offer to go watch Janey being tested, through a one way mirror.

Well---that is where we got our minds blown.  We saw a Janey we've never, ever seen.  She seemed totally at ease, and very, very on.  She's been in a great mood lately, so that was part of her, but a lot of the credit has to go to the tester, a young woman who had the perfect mix of calm voice, persistence, encouragement and firmness.  

The testing was a mix.  Part of it was identifying pictures, and Janey whizzed through that---words I knew she knew like "cow" and "apple", but lots of action verbs, which I had no idea she really knew.  For example, a picture of a boy swimming got the response "The boy is swimming"---perfect grammar and a full sentence.  With a picture of some birds, Janey first said "bird" and then when asked how many, she actually counted them and correctly answered "four".  We looked at each other in the darkened observation room in amazement.

Some of the tasks were non-verbal things, like sorting silverware or doing little block puzzles.  Janey had no trouble at all with most of them.  Sometimes, she had to be encouraged along a bit, but she didn't get upset, she kept working and she did them!

It was interesting to us that what she consistently got wrong was what I've never had any luck at all teaching her---colors.  She honestly seems to have no clue about colors, and sometimes I wonder if she might be colorblind.  I've been told, though, that many kids with autism have a hard time with colors.  She also gets a little confused on shapes.  She called a star a diamond---sort of like she knew it was one of the more exotic shapes but couldn't bring the name to mind.

Toward the end of the session, Janey was getting a little restless, and she started singing to herself.  It took me a while to recognize the song, but when I did, I was happy---it's a song I love that she's never shown much interest in---"I'd Really Love To See You Tonight".  An old 70's soft rock classic!  She just kept singing the first few lines---"Hello, yeah, it's been a while, not much, how 'bout you?"  She probably sang those 100 times over.  What struck me was how although it looked like she wasn't really paying any attention to the tasks at hand, she kept getting them right.

On the way home, as I processed the whole experience, a few thoughts kept popping up.  One is that Janey's mind truly is different than most.  Not less than most---different than most. It made me think how often I've assumed she was paying no attention, because in her situation I'd not be able to pay attention while screaming or singing or watching a show intently, but from seeing her at work, I realized her mind seems to work on more than one track at once.  

I also kept wondering how often Janey is bored out of her mind.  I've always suspected and in fact felt quite sure she knew more than she showed, but I don't think I realized how much more.  However, it's so hard to access that knowledge, and to know what she knows and how to teach her.  Tony put it well.  He said he always tries to not bring work home mentally, to leave work thoughts at work, and it's like Janey does that with school, and in fact with much she learns in any way.  If it's not something she needs to show in a particular situation, she doesn't show it.  I've asked her to count lots of times, and to use action verbs, and all that---but she seems to feel they aren't something she needs to show she knows, unless it's obviously a testing situation (and then of course only if she is in the mood)

I'm very glad we are part of the BU study. It's the kind of study I heartily support---not one that is aiming to figure out WHY she is autistic (and unspokenly, figuring out how to prevent future autism) but one that is trying to figure out the autistic mind---for that is indeed also my main task in life---figuring out Janey.  It's going to be a lifetime study on my part, and one worthy of the time spent.

Re-evaluating Janey

Today was supposed to be Janey's IEP meeting day, the re-evaluation one that takes place every three years, but one of her therapists didn't have a chance to evaluate her, so it's been delayed until the end of the month.  I did get, though, a progress report on her ABA therapy, and it was interesting to read. As I was preparing mentally for the meeting over the past weeks, I was also doing my own mental evaluation of the last three years.  How has Janey grown?  What areas are still tough?  What do we want to work on for the future?

The last three years for Janey has been eventful.  As most of you know, they featured hospital time, both time in a psychiatric hospital (with six horrible days of "boarding" in a children's hospital before that), and time in a regular hospital, for a very complicated burst appendix.  Those stays are the big things that stand out about the last three years, but there's a lot more to think about.

I'm not sure I'd go that far, but it's the only image I found that worked at all!

How would I define Janey right now, if I looked at her with fresh eyes?  Well, she's mostly a happy 12 year old, and that is wonderful.  That alone is almost enough.  She has many more happy than sad days.  She knows what she enjoys, and she knows how to ask for those things---car rides, music, videos, food, snuggling.  She's gone through puberty earlier than most, and she looks like an adult, physically, which is tough in some ways but not in others.  She continues to be very intellectually disabled.  She talks mostly in single words or phrases, she doesn't reliably recognize letters or numbers, she can't write or draw---she is and, baring a miracle, always will be unable to care for herself, live on her own, work (except in some hugely sheltered way).

The joy of her life, and the area where she in many ways is far beyond most, is music.  She has hugely sophisticated taste in music.  She knows what she likes and doesn't like, and lets us know.  Although she won't perform on demand, she very often surprises us by singing a song we don't think she's heard for years.  I do think she knows every song she's ever heard by heart, tunes and lyrics.  Music is her joy in life.  She learns far more easily when music can be part of the lesson.  She loves to dance.  It would be impossible to describe Janey as a person without mentioning music.

There are parts of life with Janey that are intensely frustrating, for us and we are quite sure for her.  Toilet training---not there.  Closer than three years ago, but inconsistent and far from reliable.  Communication, especially in terms of what is upsetting her, is still very hard for her.  She still often self-injures, by biting her arm or scratching her chest.  She occasionally lashes out at us or others---not as often as in the past, but when she's very upset, it's a concern.

The ABA evaluation, even in their required formal language, captured a lot of what makes Janey Janey.  Even the statistics---there would often be a task she did with 100% accuracy on one date and then with something like 20% accuracy on a later date.  The notes say that much depends on her mood and her level of arousal.  Janey in her best mood is so different than Janey in her worst mood that it's hard sometimes to believe she's the same person.  Nevertheless, she's made progress, and sometimes we even see school progress carried over to home.  She will ask for help when she needs it, she sometimes tells us when something hurts ("does your toe hurt?), she responds with "yes" and "no" more readily than she used to.

I think almost the more important three year re-evaluation is that of Tony's and my attitude.  I don't think any parent could go through the scares we did with Janey without an intensification of how much we treasure her.  We are so glad she's here with us.  We worry less than we used to about progress.  We accept that much of how Janey is is how she will remain, and that is fine.  On the less positive side, in some ways, we are tired.  We still so very much wish there was more respite available.  It's the week of both our birthdays, and that is always a reminder that autism, or Janey's brand of autism, never, ever gives you a break.  She comes first.  We don't have a life outside of caring for her during any non-school hour.  We love her so much, but she consumes us.  We can accept that, but I think we could be better parents to her with more help.  There are parts of life with Janey that would challenge the patience of a saint.  And then, there are parts of life with her that would delight and enchant anyone.

It's been a true privilege to share Janey's life with all of us, and to be able to be a part of your lives.  I will continue to do that for as long as I can, hopefully for the rest of my life.  It's the way that, with the restraints life with Janey has placed on me, I can try to light a candle instead of cursing the darkness. I think of all the others living this life often, and I hope all of your re-evaluations contain some elements of joy.