The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

Netflix Dilemma

A few days ago, when I told Janey to wait a minute when she wanted me to change the show she was watching on Netflix instant clue, I saw something surprising.  She grabbed the Wii remote and changed the show herself, with ease.  She knew exactly what buttons to push, how to switch shows, how to pause, how to restart a show, even fancy stuff I don't know how to do, like how to fast forward.  I watched her in amazement.  She didn't know I was watching.  I stepped away and she watched her desired show.

So---the next time she asked me to switch shows, I handed her the remote and said "You know how to do it.  You do it yourself."  She looked surprised, but did do it.  Then a few minutes later, she asked again, and I again said "Do it yourself."  She started screaming.  She ran at me as if to hit me, was warned off that, and then got on the couch and cried hysterically for quite a while.  I held out.  I said "I know you know how to work the remote yourself.  If you want a different show, you do it"  She just didn't watch anything more that morning.

Today, again, she asked me to put on a show, and again I said she could do it herself.  She got extremely upset, and wound up in time out for hitting at me.  And it started me thinking.  How important is it that she do it herself?  I know now she knows how to.  Once she learns a skill, she doesn't forget it, although she often won't repeat what she learns for love or money.  So why is it important to me that she do it herself?  What is the lesson I'm trying to teach?  Am I trying to teach her how to use technology, or I am trying to teach her to communicate?  When I put on the show for her, we interact a lot.  I ask her which show she wants, I ask her if I'm picking the right show, she sometimes describes the show a little to help me get the right now (the famous "head in a box" picture of the Kipper she wanted comes to mind)---we talk.

I automatically went for trying to have her do things herself, even though in a lot of ways, that reduced the time we would spend working on the skill I most want for her, communication.  Sure, it's very good she can do it herself.  But she's shown she can.  I don't need her to do that over and over to prove it to me.  Sure, it saves me time and frustration and boredom, and I am sure if I just put her off for a few minutes sometimes, she's do it herself again, just to get the show she wants.  But I need to think twice before I insist on her doing something without my interaction.  It's the interaction that is the skill I most want to teach her.  More than self-reliance.

This autism parenting stuff is complicated.

The fun parts

Lest Janey's recent mischief-filled days overshadow the fun that is Janey, here's a few of the cool moments from recent times----

Janey's enthusiasm for going places---any places pretty much. Last night we had to go out in the evening to pick up the boys from a teen night at a museum. Janey saw it was getting dark out and we were getting her ready to go out, and she was overcome with delight. A car ride? At night? It was like we'd given her a million dollars.

Her growing abilities to figure out electronic devices. The other day, I heard music coming from the iPad that I didn't recognize. I watched Janey playing, and saw she had somehow figured out how to go to a game I play and click a long series of buttons to get to a place where you could watch preview videos for other games, and was enjoying some kind of Barbie Fashion video. I was amazed. She can also now turn on the TV, go to Netflix, pick a show and pick an episode. This is the girl that the technology person for the Boston Public Schools said would "maybe" be able to operate a one button speech device.

Her dancing. She has started watching "Yo Gabba Gabba", which is a weird but dance-intensive show. She follows the moves shown closely, and imitates them very well.

Her ever-evolving tastes in music. She now stops me often when I play songs in the car and says "I like that! I want...(name of song)" Yesterday it was "Hey Nineteen", a song I love, and we listened to it happily together 4 times. Her tastes are pretty eclectic, though---the other day it was "Phantom 309", a creepy ghost story trucker song done by Red Sovine.

Her ability to stay on topic, but mix it up. This mostly relates to her new love of getting Happy Meals at McDonalds or Burger King. When she wants one, she thinks of about a hundred ways to ask for one, as if we just aren't getting her the first time "I want Old McDonald!" "I want fries OR nuggets!" "I want go to the drive-through" "Old McDonald had a farm, and on that farm he had some CHICKENS!" and of course the old faithful "I want McDonalds NOW NOW NOW NOW NOW" She doesn't seem to get that discouraged if we say no repeatedly---that's part of the fun of the hunt for her.

Her growing relationship with her brothers. She puts on a different Janey when she is with them---a pesty little sister Janey. The other day in the car, she and Freddy were exchanging pokes and nasty looks and yells---something I would be tired of if it had happened for years now, but it's new, at least having her an active participant and seeming to enjoy the game.

There's many more. I get so tired and discouraged some days I think I portray Janey in too negative a light. There are many times a day she delights us---sometimes through our tears of frustration, but still, she is amazing in a lot of ways.

Some ideas and some depression

When Janey had her IEP meeting in December, I requested that she be evaluated by a technology specialist, to see if she would qualify for any kind of technological help in communicating. I had kind of hoped she might be able to get an iPad or something like that, which I had read was really helping some kids with autism, but I realized that it was unlikely she would be able to demonstrate that she could use one. We had a meeting Thursday to discuss the results of her evaluation, and as I expected, the evaluator didn't think Janey would be able to understand or use a multi-button device. She did think Janey would be helped by a single button recording device, that could be programmed to say something like "I need help!", and in fact Janey learned to use one very quickly while the woman was evaluating her. It's not that Janey can't say that phrase, but to get her to actually say it at appropriate times is extremely hard. The button can take away a step, make it less personal and easier, and can also lead to Janey saying the phrase verbally. So I was okay with that suggestion.

The evaluator was very good. She hadn't met Janey before, so came in with fresh eyes. That was eyeopening and to me, kind of depressing. She said what I know to be true, that we should keep in mind that Janey can't think or understand at nearly the level some of her talking makes it seem like, that just because she sometimes uses complete sentences doesn't mean she understands complete sentences, and that if we need to get a point across to her, we should state it very simply, or maybe use pictures. I don't think the pictures work for her, but maybe. I asked her the question I had been asking myself---how to I respond to repeated delayed echolalia? She actually had an answer, and a good one. She said to treat it like you would treat a baby babbling, because that's what it really is...playing with the sounds and intonations of language, even though it might sound like more sophisticated speech. So not so much respond to the actual words, but to the intent, which is to try to communicate. Make a guess at what she is trying to actually get across, and respond to that with short utterances and encouragement.

It was all good information and accurate sounding information, but it still of course depressed me a little. I think a lot of my hopeful feelings about Janey are at a low ebb lately. She doesn't seem very connected lately, she is crying more, she is more babyish---more affected seeming. She is continuing to do things like take off her seatbelt, she is peeing on the floor all the time, she is taking off her clothes all the time---and I am truly often feeling like she doesn't get what I mean at all when I try to stop her. Maybe because she isn't capable of understanding reasons or cause and effect. I lecture her for taking off her seatbelt, and she repeats back the right things, but she doesn't really make the connection----"seatbelt off equals Mama mad". And so if the urge strikes her again, she just does it again, as she does all her other things that are dangerous or destructive. I feel like I am waking up every day feeling a bit of a sense of dread. I love Janey so much, and I am so scared for her and her future.