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!

"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.

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.

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

Toilet Training..of a sort

I recently got asked to review a book for Amazon about toilet training autistic children. I'm only half way through, but it got me thinking I should really give the whole toilet training bit another whirl. Janey is in no way at all trained. She has never ONCE used the potty for urine (or once, at school, but I didn't see that and it was years ago). She seems to be to have next to no awareness of when she needs to urinate. She can hold it for half a day, so I think she must have some control, but she doesn't seem to know how to let it go at will. I gave up for a while after a few years of no success. I don't mean I was trying hard every second of that time, but at least as hard as I tried when training the boys, and they were both trained fairly easily. But I know at some point, it just has to happen. So I decided to put her in underwear during the day all the time, and take her to the bathroom every half hour or so. We've been doing that for a couple days now. Still zero success. She wets herself about once a day---she's dry the rest of the time, and she will sit on the potty for a minute or two fairly happily, but never, ever actually pees there. I'm partly motivated by how much pullups cost, and how much she seems to hate them now---we were running through them like crazy as she took them off constantly, whether they were wet or not. That's a lot cheaper with clothes, and I don't mind washing them and cleaning up. So I guess it's worth a try.

The other full court press I've been trying is teaching Janey to talk about feelings. That one is going a little better. When she cries or is upset, I right away rush over, say something like "Oh, no!" and then say "Are you sad or angry?" She picks one or the other, I think probably at random, and then I ramble on about the one she picked "Oh, you might be sad because you wanted Mama to snuggle with you and I was doing something else!" or "You might be angry because I said no more videos right now!". I'm trying to teach her that she can express why she is upset, and that being upset usually has a reason, even though I'm not always sure it does for her. I'm trying to talk a lot about happy, surprised and scared, too. I point out my own feelings to her a lot "Mama felt happy you picked out your own shirt! Mama was scared when you screamed really loud like that!" Like so many things with Janey, it's almost impossible to know what's getting through, but often months later she surprises me with knowledge of something I said long ago, so I can hope.

9 days till school starts!