Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus

Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.

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!

Celebrating Autism Day by going all AAC

I'll just call it Autism Day, without putting an "awareness" or "acceptance" or anything else on it.  Autism deserves a day, and it doesn't need any modifiers.

Proloquo2go

I'm starting something new this Autism Day.  Janey has never shown much interest in AAC apps (Augmentative and Alternative Communication).  This year, however, her school has been using a program called TouchChat to has her say certain things, like to help her ask other rooms if they have any recycling or to help her participate in morning meetings.  Reports were she showed some interest in it, and I decided to go for it---to really try to do AAC at home.

TouchChat

The first thing I needed was a more up to date iPad for her, and the very kind gift of a dear friend helped us out there and allowed me to buy Janey a brand new one.  She still is using the old one we got her, and that thing has been through hell and back, protected with a Gumdrop cover.  That is one product I will recommend to the stars and back.  So I've ordered a cover for the new iPad.  Today, since it's Autism Day, a lot of AAC programs were on sale (although not TouchChat).  Since we got the help with paying for the iPad, I decided to toss caution to the wind and buy 3 different AAC programs---TouchChat, ProLoQuo To Go and Aacorn.  The last two were on a good sale.  I figured I'd fool around with them some before showing them to Janey, and see which she likes, or if she likes a combination.  

Aacorn

So far, after just a little bit of testing by me, I really like Aacorn.  It is set up in a very kid-friendly way, and had a great tutorial.  But that's an extremely early observation.  I'll be writing about our AAC attempts in days to come, I'm sure.

How am I celebrating otherwise?  Well, Janey will get her trip to the ice cream store when she gets home, and we'll watch some videos, and Daddy will probably make her some soup for dinner, and we'll snuggle at bedtime.  There might be a car ride, too.  Nothing much different than what we do every day, because in a way, every day is autism day here.  We've figured out the routines that work, mostly, and we don't stray a lot from them.

I'm not going to try, this year, to say anything summing up or meaningful or awareness-raising for this day.  Part of that is just tiredness.  Part of it is a growing realization that thinking about autism as one entity, one type of life, is like calling all different kinds of fruits just "fruit".  There are way too many ways autism shows itself, way too many different variations, to be able to say much about the autism community in general without over-simplifying.  I can talk about Janey, and I can talk about our family, but I can't really speak for others in any general way.

I can, though, sent out a special wave of love to everyone out there with a life that includes autism, whether it be those who are autistic themselves or those who love someone with autism.  Happy Autism Day!

Word Retrieval and Blaming The Cat

Yesterday, Janey tripped over a cord when I was vacuuming.  She screamed, and I turned off the vacuum and ran over to her.  She was fine---she didn't fall down, just lost her balance a little.  I started saying the things mothers say when their child is upset "What happened, sweetie?  Are you okay?" Of course I knew what happened, but there's kind of a patter that kicks in at times like that.  What surprised me was what Janey said.  In between tears, she said "Did Merg scare you?"

Merg is one of our cats.  He was nowhere near us at that time, and certainly didn't scare Janey.  I said "Merg scared you?" in surprise, and Janey said "Did Merg scratch you?"  With Janey's usual reversals, she meant of course that Merg scared and scratched her.

This incident made me think about how Janey's issues with word retrieval might be the cause of a lot of her anger and lashing out.  It so often seems like it's very, very hard for her to find the right words and sentences to use.  She knows what she wants to say, but she can't think how to say it.  So instead, she says something that DOES come to mind.  There was a time a few months ago when Merg did scare her, after she pet him a bit too much, and we asked her at that time "Did Merg scratch you?"  He hadn't, but the phrase stuck in her mind.  I'm sure we might have said then "Did Merg scare you?"  When Janey was scared by the tripping, somehow that script came to mind.

So often, Janey asks for things, and then when she gets them, she acts like you have done something very wrong in giving them to her.  I am thinking that many of these times, what she asks for is not what she wants at all.  She'll say "I want bacon!" or "I want Kipper!" when she wants SOME kind of food or SOME show, but not those specific ones.  And we, understandably, try to give her what she asks for, and I can imagine how frustrating that must be for her (and for us).

We have tried using visual aids to help Janey with this, like pictures of various foods or shows.  However, it often seems like the word retrieval is more than just not being able to say what she wants.  It extends to being able to point out what she wants.  She often brings us videos, videos she knows by pictures on them, and then when we put them on, there is again the fury.  Her mind seems to trip her up, like the cord did.  It isn't able to form either a word or a picture for what she really wants, although she knows what she wants in other ways.

It's hard to think of a solution to this problem.  It seems like there are circuits in her brain which just don't allow her to find words or pictures in an straightforward way.  I feel for her so much with this.  I can't imagine what it would be like to want something, to know it's possible to get, but to not be able to find the words to ask for her, or to be able to pick out the right picture, or write the word down, or really communicate in any way what it is that is wanted.

This problem also makes it very easy to unconsciously influence what Janey says.  Sometimes when we are desperately trying to figure out what is wrong, we give suggestions, and Janey grabs at them like a life ring.  For example, if she wakes up screaming, we might say "Do you want bacon?" and she'll echo that---"DO YOU WANT BACON?" So we think we've hit on it, only to make her bacon and see her get even more upset.  Even in the Merg-cat case, something we said months ago popped back up and lead to her accusing Merg of evil-doing he had nothing to do with.

At times, I feel like this problem with being able to communicate is a huge part of what makes Janey challenging.  Other children with autism seem to be able to use communication devices or programs like Proloquo, but I think that is when the problem is more with being able to use verbal speech.  Janey is easily able to form verbal speech---I think the problem is more being able to access in her brain either a word or a picture for what she wants.  And I wish very much I could help her more with this, help her communicate her wants and needs so we could better meet them.