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Saturday, May 26, 2018

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance
I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!
Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

Monday, May 21, 2018

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.

Friday, May 11, 2018

Janey's request and how it hit me

Janey running down the driveway
As the weather gets more summery, Janey loves to be outside.  Her favorite thing to do is just to run around our driveway.  The driveway is fairly long, and on a slope, and she does laps, and sometimes yells out in glee as she runs down the slope.  She seem to enjoy just being in the sun and wind and weather.

Last night, after a car ride with Daddy, I went outside and sat on the steps by the driveway to keep an eye on Janey as she played.  After a few minutes, she came over to me and said "Want to snuggle on Mama's bed?"  I took that to mean what it usually does---that she wanted to go in and have us both get on her bed for a snuggle (the bed is Janey's, but it seems to be named "Mama's Bed")  I started in and waited for her to follow, but she didn't.  I said "Come on in, Janey" and she then said what set me back "Want to go away?"

Janey says "Want to go away?" a lot now, but until now, always inside.  She often wants me to go in the next room, to get out of her sight a bit.  I try to do just that, whenever I can.  She has a right to time to herself.  Of course, I'm always keeping my ears open, and every few minutes, taking a peek to make sure she's okay.  She almost always is, or if she's doing anything that I need to stop, it's things like fixing herself a bowl of salad dressing like one would have soup, or trying to re-arrange the cats when they don't want to be re-arranged.

Up until yesterday, though, Janey had never asked me to leave her alone outside.  And, of course, I can't.  I can't leave her alone outside, ever.

I tripped over my words in answering her.  I wasn't expecting the request.  I said something along the lines of "Mama has to stay out here with you.  You're not big enough to be outside by yourself.  I need to be here to take care of you".

Of course, Janey is old enough that if she were typically developing, she could certainly be outside by herself.  She's 13.  When I was 13, almost every day after school I walked through a little woods across from our house and spent hours at the shore, exploring the rocky banks of the St. George River in Maine.  I love being alone.  I always have.  I crave that time alone.  I'm not sure if Janey notices, but if she does, she's probably seen plenty of girls her age without parents, walking down the sidewalk or in stores or the like.  But she can't be those girls.

We live on a very busy street, one almost like a highway.  Janey has never run into the street, but I live in fear of it.  There is also lots of foot traffic on the sidewalk, people I don't know and obviously can't leave a mostly non-verbal child with no understanding of the dangers people can pose alone outside.  If none of those were a danger, there is the fact Janey sometimes eats non-food items, that she might decide to push aside a stray cat or dog, that she just simply doesn't have the skills or knowledge to take care of herself alone.

Janey gave me a long, hard look after I said no.  She didn't cry, or repeat her request.  She just looked at me.  I was almost crying.  I couldn't say something like "not right now" or "when you're older".  The truth is---it's very unlikely, pretty much completely unlikely, that Janey will ever, ever be able to be on her own in public.

After a few minutes, Janey headed to the door and we went in.  She seemed to be over my "no".  But I thought about it for hours.  I can't imagine a life where I would always have to be watched, supervised, taken care of.  Maybe Janey doesn't feel that way.  I don't really know.  I guess I hope, I hoped, she didn't.  It's easier to hope that, to hope she doesn't see how her life is limited.  As she gets older, as she gets to ages I can so vividly remember being, as I look at her and see a beautiful teenager, sometimes my heart breaks for what her life can't be.

Friday, April 27, 2018

The power of what we do and don't talk about

Yesterday was our 26th wedding anniversary.  As happens on days like that, Tony and I were reflecting on our past, and especially on my pregnancy with my first child, William. 

Then in the early 90s even more than now, it seemed like pregnancy complications were something not to be talked about.  It was the heyday of "What to Expect When You're Expecting", a book that seemed determined to let you know that everything you were experiencing was just fine, perfectly normal.  There were a few small pages only about what can actually go wrong, and they were presented as something you probably didn't even need to know about, something you certainly shouldn't dwell on.  And so when my pregnancy felt different than what I read about or saw around me, I figured I was just being paranoid. 

I wasn't, and William was born at 7 months by emergency C-section because my pre-eclampsia had progressed to life-threatening levels.  It turned out, in my family anyway, that wasn't that uncommon.  On my father's side in particular, pre-eclampsia turned up often, with the strongest example being my great-grandmother, who died of eclampsia, seizures, a few days after my grandmother was born.  A few months after William's birth, the TV series ER had an episode called "Love's Labor Lost", in which a mother dies from complications of pre-eclampsia.  I wish I'd seen it sooner, although it was the hardest thing to watch I've ever seen.
A scene from ER's "Love's Labor Lost"

Of course, there are reasons we don't talk about everything in our lives publicly.  There is much in all our lives, including mine, that we don't share.  The reasons are many, and sharing or not is a choice we have a right to make, and sometimes an obligation to make.

However, at times, sharing can be life saving, or soul saving.  My life, and William's, were in the balance around the time of his birth.  I wish I had known what I know now about how suddenly and drastically pregnancy can take a turn.  And when it comes to my life with Janey---if I hadn't found the people I have, through this blog, mainly, I don't know if I would be here today.  There were days, and nights, that were only survivable by knowing that others had lived this life and gone on to a place of calm, even happiness.  And what keeps me writing today is those letters I've gotten from others with girls like Janey telling me how knowing they weren't alone kept them going.

Something I try to always keep in mind, though, is that there is much we don't know about the lives of others.  We don't always know what others are struggling with, what health issues or family issues or any other issues are affecting their lives.  There are many things we don't share, or aren't ready to share.  There are many times we are the ones depending on others who ARE ready, who DO share, whose stories we cling to as we struggle with what we ourselves are not yet, or ever, sharing.  Help comes in many forms---both in how we give and how we get help.

I want to thank those who have made me know I'm not alone, over the years---both those who shared their life experiences and those who didn't, but used them to become comforters and helpers of others.  May none of us ever feel truly alone.

Thursday, April 19, 2018

"Talker Machine?"

Janey does things her own way.  We've learned our lesson through the years, and trying to force her to do thing our way doesn't go over well.  This is proving true with our foray into TouchChat.

Last week, Janey's wonderful teacher synched TouchChat at school with our version at home, and also added to both buttons for our family and friends (and cats).  It's fantastic having a way finally to talk to Janey about specific people at school, and to let her talk about people at home while she's at school.  I've been playing around with TC constantly on my own, figuring out all its features.  And we've had it available for Janey to use at all times.

So, how is she taking to it?  It's a mixed bag.  I'll have to say it can be frustrating.  The most common thing Janey does with the program is pick the exact middle button, over and over, though screen after screen.  Doing this creates the sentence "I don't want to listen to CD"  Maybe this is a message Janey wants to get to us, but the thing is, she has basically never seen a CD, never listens to them, and when I showed her some and tried to figure out if she knew what they were or did, she showed no interest.  So like with a lot of things, I think pressing the middle buttons has become a routine, not really a way to communicate.  And that's fine.  If that is a way Janey enjoys using her "talker", and it makes her feel comfortable with it, I am happy.  But I do wish she'd be a little more interested in exploring other possibilities.

I've been doing a lot of reading about getting started with AAC, and modeling the use of the device is a big part of it.  So I am often using it to either say things I want to say to Janey, or to model what she might want to say with it.  For example, if she is irritated we don't immediately take her for a car ride when she wants to, I make it say "I am frustrated" or " I want to go to the store" or "I want to wear shoes" (another way she asks for rides).  This doesn't seem to encourage her to use TC to talk to us, but it does seem to be helping her organize her verbal talking, which is wonderful.  We've heard her use more complete sentences lately than usual.  The other day, she said "I want you to clean my foot" to me, extremely clearly.  The usual way she'd ask something like this is to point to herself and say "you want to clean feet?"  I was startled and thrilled.

The tricky thing with getting Janey into TC is that she is at the height right now of a teenager phase of not wanting me around often.  The most common thing we hear lately is "Want to go away?"  She wants to be alone when she watches her videos, or plays with her regular iPad watching YouTube on her bed, or basically any time we are around harshing her mellow and getting in her face.  So having me cheerily constantly around modeling TC is not really how she wants to spend her time.  I'm finding the time she's most open to it is when she wants something from us.  If you've had teens ever, you know that is about as typical as it gets.  When she wants a ride, or wants us to cook her something, or wants a certain video, she is much more motivated to at least watch us use the TC than other times.

Most nights, as I lie down with Janey to snuggle as she falls asleep, something I do most every thing, I've been having the TC open and playing around with her, saying silly things to each other like "I'm so over that!" and "Whatever!"---one of the great features of the program is it lets teenagers say teenage things like that.  Last night, though, I didn't bring it with me for our snuggle, as Janey has been resistant to it throughout the day and I didn't want to irritate her.  But after we were snuggled down, Janey said "Talker machine? Want to get talker machine?"  That was a wonderful thing to hear.  Whether Janey is using AAC in a conventional way or not, we are having fun with it, and I'll continue to model and play around and do what I can to give Janey a way to augment her verbal talking.

Thursday, April 12, 2018

What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

Tuesday, April 3, 2018

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!