"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

Day One with AAC apps

I thought I'd write white it was fresh in my mind about how it went yesterday afternoon introducing Janey to her new iPad with three AAC apps on it.

I was a little nervous about showing Janey the "talker", as I had told her it was called.  I'd mentioned for a few days that I was going to get her a talker, and that she could use it for an extra way to talk.  She had seemed somewhat interested, and yesterday before going to school when I mentioned it, had actually said "Talking!  Talking!  Talking!"  But I was wary, as sometimes if Janey doesn't like the looks of something, she will never, ever take to it after that first negative impression.  And a few years ago, when I had gotten some demo versions of AAC apps, she'd hated them. So...

Right when Janey got home, I had the iPad out and waiting.  She asked for cheese, and I used the TouchChat app, and said "Let's see if we can get the talker to say that!"  I made it say "I want to eat cheese", and right away I went to get cheese, leaving the iPad with her.  As I had hoped, she jumped in and played with the "dairy" category I had open, pressing "ice cream" and "butter" to hear them said.  We had the cheese, and then Janey asked for soda.  I did "I want to drink..." and got onto the "drinks" page, and she pressed "soda".  So far, so good!

When Janey asked for the store, I had TouchChat say "I want to go to store" while Janey watched with interest.  We went to the store, and when we got back, Janey right away grabbed the iPad and had TouchChat say "I want to talk to Grandpa"  I wasn't surprised, as her teacher had told me that's the sentence she often does at school.  Still, it took going through several screens to get it said, and I was impressed with the ease she had doing that.

A bit later, Janey started screaming, a common interlude in our afternoons.  This time, I used Aacorn, and brought up a choice of five feelings.  This app is a little different---when you pick a general category, it gives you a circle of five choices, surrounded by the general category, so this said "Feelings" surrounded by "happy", "excited", "sad", "love" and "hate".  If none of those are what you want, you can press the "Feelings" button again and get more choices.  The more you use the app, the instructions say, the more it knows what you might pick, and puts those choices in the first 5 to come up.

Janey picked "happy", even though she was screaming.  That's another thing the school had mentioned she does---identifies her feelings as happy no matter what they are.  She pressed the "happy" button over and over.  I pushed the feelings button a few more times, and it came to a place with a choice to pick "hurt"  Janey pressed that, and one of the choices came up "head", which she pressed over and over.  I took it back to a screen with a Yes or No choice, and said "Does your head hurt?" and she pressed Yes, over and over.  Interesting.

Later, I showed her the Proloquo2go opening screen.  She right away started playing with it.  To me, it looks like a more intimidating and less user friendly interface, but as the evening went on, it seemed that was the app of the three she liked best.  Before bed, I put both her old iPad and the new one on her bed.  She grabbed the new one, and went right to the Proloquo app, and played around with it for quite a bit.  What surprised me is she seemed drawn to words like "I", "on", "it"---not so much the nouns.  Maybe those words are harder for her and she likes being able to hear them said so easily.

We were on the feelings screen as Janey was getting tired, and she picked "sorry" and "tired" and then turned to her old iPad and put on YouTubeKids as she went to sleep. 

Overall, quite a wonderful start to trying AAC!  Janey was more interested than I had even hoped.  I'm going to work hard on keeping it all low-key.  That's essential with Janey.  She's a typical teen in a lot of ways.  If I act all hyped up for the "talker", it's quite likely she's react by showing less interest.  So I'm going to keep doing what I've been doing---modeling a bit, leaving screens open for her to play with, and just letting her have fun hearing what she presses be said. 

I like having the three different app choices available for her.  She doesn't seem confused by it, so far, in these early stages, and it's quite interesting to see she seems to like busy, very full screens more than minimalist ones.

I'll try to update our AAC journey regularly!

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.

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

Sometimes, you do have to cry

I've been working at starting seedlings inside a lot this spring.  It's been a mixed bag of successes and not.  I started everything too early, and the spring has been very cold, but everything was getting too big for the starter pots and too leggy to live, so I had to put a lot of things outside before they were ready, and they are not doing well....and I could go on and on.  All this is said as background information for yesterday and my big cry.

Janey came home from school in her typical after school no talking mode.  We have worked out what she likes to do, and it doesn't need a lot of words---a little cuddle, then a lot of cheese and onions, then some videos, then usually a shower.  We did that routine, and I put a dress on her to be ready for the next part of her evening routine---a car ride with Tony when he gets home.

Not my actual seedlings, but very similar ones!

Then I made my big mistake---a quick check of my email.  Janey was happy, in the next room, watching a video.  I got an exciting email from William, the older of Janey's two brothers, saying he had been nominated for a history honor society, kind of like Phi Beta Kappa for history majors and historians.  I was very proud of him, and wrote a quick email back to say so, and then started to forward his letter to his grandparents.  Janey came over at that moment, and I noticed her dress, previously clean, was covered with dirt.  I ran over and saw she had somehow, in the literally three to four minutes I hadn't been actively watching her, played around with some pepper seedlings I had been planning on planting outside that afternoon later.  They were all over the floor, dirt was everywhere and a spring's worth of growing them was going to be for naught.  It was actually pretty impressive how much she did in so little time.

I stayed calm.  I didn't even feel like being angry---I don't get angry that often.  And at first, I didn't even feel that upset.  But as I started to clean up the table, floor and Janey, I started to cry.  I couldn't stop, once I started.  I had been feeling low for a few days, and it all hit me hard right then---that still, after all these years, it was still impossible to have a few minutes to myself, how it felt unfair to William and to Freddy how rarely I could concentrate just on them, how I couldn't see any end in sight to the tough parts of life with Janey.

As I tried to clean, she decided she wanted a video.  I told her I had to clean up first.  She didn't take that well, and started screaming and arm biting.  I kept cleaning, and kept crying.  When she saw I was crying, she gave me a curious look, but then went back to screaming "I WANT KIPPER!"  In that moment, I felt totally defeated.  I felt like I can do all I can to keep Janey happy, and still, the minute I can't do what she wants that second, she's furious.  She doesn't think "Gee, she's been doing what I wanted all afternoon, and in fact for years, really.  I made a huge mess and she's cleaning it.  I could lay off her for a minute"  Of course she doesn't think that.  It's not in her to think it, and when I am not in a state, I can accept that.  But as the vacuum jammed and the floor became more covered with wet dirt and dead seedlings, I wasn't thinking well.

Life with Janey isn't easy.  I know here I'm supposed to say life with any child isn't always easy, that the special rewards of being her mother make up for the tough times, that it's not a child's role to make the life of their parents easy---I know all that, and I believe all that.  But there's a difference here. Although she makes some progress in some ways, although as I wrote about recently, her stages like the mischief stage do eventually get better, Janey isn't ever going to really grow up.  There isn't going to be a day when she truly understands that I'm doing the best I can, that maybe she could wait five minutes for a video while I clean up, that she shouldn't toss dirt on the ground, that I have feelings too.

I've regrouped today.  I'm ready to get back out there, to do my level best to help Janey have a good life, to try to be the mother I want to be.  But I am pretty sure each of you knows the feeling behind the tears yesterday.  If we don't admit it's tough sometimes, it's a very lonely kind of sadness.  We have to be able to admit this isn't an easy gig, being a parent of a child like Janey.  I am going to resist for now the urge to modify that statement, and just let it stand, for now, for once.  It's not easy.

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.