Catching Up

 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.

One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we had go to through for this.  He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem.  It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process.  We were adviced just one parent should be the guardian, in most cases, so we picked Tony.  It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.

Another happening---Janey finally started getting social security.  It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot.  We are getting retroactive payments back to her 18th birthday, too, in several installments.  We are using her money for the special food she asks for, and for clothes and pull-ups and so on.  This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all.  But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.

We are currently in the middle of yet another endless process---what is called the 688 application.  It's the process for getting Janey services when she turns 22, in less than 3 years now.  It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood.  It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us....  I simply can't understand it can't be an easier handoff from school to adult services.  And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.

This ties in a bit to one good development.  Janey has started an after school program.  She hasn't been in one for many years, since she was about 8.  This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22.  It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way)  On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am!  It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us.  From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22.  We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged.  We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!

We are very happy with Janey's new teacher for the regular school day, too.  Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie,  is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.  

Over Thanksgiving weekend, Janey has a tough time.  We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that.  Whatever it was, she cried and screamed and was unhappy all day long for four days or so.  It was a horrible flashback to the past, when that kind of time happened so much more.  But it was also a good reminder of how far we have come, that we rarely have that kind of time any more.  Most of the time, Janey is pretty content.  She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over.  Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4.  We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.

With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to.  Janey isn't into Christmas.  She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings.  I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s.  It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us.   I hope that all of you enjoy the holiday season in a way that works for your family.  I hope 2024 is a good year for all of us.  Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond.  Happy Holidays!  Merry Christmas!  Happy New Year!

Still Screaming After All These Years

This afternoon was hellish.  There is no other word for it.  The morning wasn't any piece of cake either, but things really kicked into gear this afternoon.  It's hot as, well, hell, about 98 and humid.  Janey didn't sleep well last night, and although she slept in some this morning, we all are tired.  I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him.  As I left, Janey was screaming for a car ride.  Freddy was staying with her.  I told him if it got to be too much he could call me and I'd come right home (it's right around the corner).  He was a trooper and handled her.  When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.

She was no longer interested in a car ride.  What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room.  So I did that.  In the course of about an hour, I changed shows literally about 30 times.  Most of these times included tears from her when I didn't immediately understand what show she wanted.  As soon as the show was on, she'd say "Go away!" and point to my bedroom.  I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again.  If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream.  One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.

About every third show, Janey asked me to cuddle on her bed with her.  I did.  The cuddles lasted at most 30 seconds.  And then---back to the shows, the sending me away, the asking for a new show...

You might ask, very reasonable, why I let this go on for an hour.  The answer is...I'm tired.  I tried the more measured approach the last few days, the #3 approach I mentioned in my last post.  I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well.  To say the least.  This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy.  She does ask to change shows, but not at that pace.  She does scream, but not constantly.  But today, whatever haunts her brain at times was in full force.  I think it's OCD.  The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.

I know those feelings.  I've had those feelings, so many times.  I am on medication for those feelings.  I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read.  But Janey doesn't.  To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities.  And often, doing them for a while calms her.  Not today.

After an hour, I was at the end of my rope.  I turned off the TV and suggested a shower.  That often can break the chain.  Not today.  Janey did want a shower, but she screamed all during it.  She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements.  If it breaks, there will never be another one.  It didn't break, but it hit the floor hard.  Janey got out of the shower after a few minutes, still screaming.  I was feeling shaken.  I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone.  For a long, long, long time, after I hung up, Janey screamed.  I spoke to her as soothingly as I could, while literally praying for calm.  I am fairly agnostic, but you know the saying about foxholes.

And then---Janey calmed down, for now.  I put the TV on computer mode, so she could pick her own videos, which she is doing.  She hasn't asked for anything during the 15 minutes or so it's taken me to write this.  Just now she's come over and asked for a car ride.  Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile.  It's too dangerous.  So, she has settled for a walk to the store.

Why do I write this?  It's not, as sometimes parents like me are said to be doing, to get sympathy.  Raising Janey is my job, and my privilege.  Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!"  or "I could never do what you are doing!"  Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them.  It's not to try to get help.  I've given up on that.  The kind of help that would actually, you know, help, doesn't exist.  Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand.  I would not put Janey or anyone else in the position of having to try to handle this kind of day.

Why do I write about days like this, then?  I write so others living this life know they aren't the only one.  I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me.  There are lots of people living this life.  I write because that's what I do.  I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing.  I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.

But I also write for Janey.  I write because she can't.  I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am.  She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us.  She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing.  She's dealing with a world that doesn't always welcome her kind of diversity.  She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can.  And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.

The Slightest Hint of Negative Emotion on TV

I'll have to admit I'd love it if Janey would watch TV passively.  At the end of a long day, it would be a dream to have her just sit there glued to the screen, watching whatever came along and giving us all a little break.  If that makes me a horrible mother, so be it.  But it never happens.  Janey's TV watching is an interactive, restless and volatile experience.  The videos are stopped and started, the shows turned off and changed and turned back on.  Almost always, at some point during a video or show, Janey screams and angrily turns everything off.  For a while, she felt the need to smash the TV while doing so, but after long enough of us just unplugging everything when she did this, she now turns it off more delicately.  Then, due to today's complicated mix of Netflix and Amazon Prime and so on, to watch again, she usually needs some help (partly because I had to install passwords on Amazon Prime after she bought several expensive seasons of shows on her own).  Therefore, lately when she's watching TV, I watch with her, knitting or sneaking in a little reading between putting shows back on.   This has let me figure out what seems to trigger the need to freak out and turn off shows.


Basically, Janey hates characters on a show to demonstrate any negative emotions.  Strangely, this is more so the case for subtle negative emotions.  If the characters are very plain in what is making them upset or mean or angry, it's usually okay---she watches "Courage the Cowardly Dog" happily often, and there is some wild and strange emotion there, but it's very, very obvious.  She can happily view the bizarre enchanted evil book in "The Care Bears Movie",  but she loses it at the merest hint of annoyance of Little Bear's antics shown by his parents.

Janey's favorite shows are usually very mild ones.  Right now, she most often is watching "Little Bear", "Kipper" and "Oswald".  All of them were originally on Nickelodeon for preschools, and trust me, they don't feature a lot of fight scenes or confrontations.  But Janey picks up on anything less than perfect harmony, and seems horribly upset by it.  For example, in one episode, Kipper's friend Tiger is fishing.  He is not catching anything, and at one point he says to Kipper "Let me tell you something.  Fishing is very, very boring"  Tiger is a bit of a malcontent, and he says this in a slightly annoyed voice.  Janey freaks out.  She has to turn off the show every time at that point.  Or Oswald's friend, the penguin Henry, another slightly grouchy character, turns down Oswald's offer to go to the beach, saying he doesn't like the water.  His very minorly prickly tone causes Janey to start crying and turn off the show immediately.

Janey's discomfort with such slight shows of negative emotion seems to go against a lot of things people think about autism.  Isn't she supposed to be unaware of subtle emotions?  And in fact, stronger emotions often seem to not affect her a bit.  Freddy and I watch a lot of "Star Trek Voyager", and there are some fairly dramatic scenes in that show, but Janey never seems to mind.  My theory is that Janey feels scared when she doesn't know quite why people are acting the way they are.  If it's very obvious, that's okay---she can classify that.  But if the scene is more subtle, and her hugely sensitive ears pick
up a tone indicating something is happening she can't quite put her finger on, that is scary.

Lately I have tried to talk to Janey about the scenes that upset her.  Yesterday, when watching Little Bear, the mother bear came home after Little Bear and his friends had messed up the house.  They cleaned up most of it before she got in, but she realized things were out of place and said something like "Little Bear, why is there a croquet ball in my knitting basket?"  Her tone was enough to get the TV shut off.  I said "Mama Bear was a little upset there, wasn't she?  She figured out that Little Bear had been a little silly while she was gone.  But she understands that bears sometimes get a little silly.  She isn't that angry"  Janey gave me one of her deep, intense looks, one of those looks I love that seem to say "Hey, you hit on something there.  You got me"  We put the show back on and watched the rest together.

Realizing how sensitive Janey is to even mild TV shows makes me realize how the world must often feel to her.  It's a confusing, overwhelming place, and often, just shutting it out must feel like the best strategy.  I can see why she screams and lashes out when it gets overwhelming.  It must be easier to put our her own strong emotions to cover up all those swirling confusion messages out there.  I hope I can somehow help Janey a little to be able to face this emotionally complex world, but it's not going to be that easy.

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 Little Mermaid and Journey to Joke-a-Lot

Janey has recently gotten heavily into two full length movies---The Little Mermaid and Care Bears: Journey to Joke-A-Lot. She wants to watch them, one after another, all day long. We of course insist on some annoying other activities in between, and school and sleep and eating and so on get in the way, but I must say she watches them plenty. And like anything show or video or book or song she gets heavily into, she memorizes them. She is always coming up with scraps of dialogue or snippets of song. One of her teachers surprised her by knowing that "Poor Unfortunate Souls" was a song from The Little Mermaid. I'm sure people are sometimes confused, though, by her saying "I've never seen a human this close before!" or "He said the S word!" (which in the Care Bear movie, is "serious"---you can't say serious in Joke-a-Lot.

I try often to figure out why Janey (and other kids with autism) get so consumed by videos. Other kids like videos, but I don't think most kids completely live in them like Janey or her compadres do. I know a lot of it is predictability. She knows what will be said next---it's not like the real world where people can say or do anything out of the blue. It's also music, for Janey---I think she'd love to live in a world of real life musicals, where people burst into song and dance numbers occasionally. But I also think the movies and videos give her a way to understand emotions, and to prepare for them. There are parts of both movies that scare her. When those parts are about to happen, she usually runs over to me and says "Snuggle on Mama's bed!" I've figured out she doesn't really care if I don't get on the bed and snuggle with her. It's just a way of telling me that she is upset. And it's not, in these cases, truly upset. It's an anticipation of being scared, a very controllable one. She seems to be working on a way to deal with the scared emotions.

I try to use the videos to draw her into our regular world. Yesterday at a thrift store I found a Little Mermaid shirt for her. I showed it to her and she was so excited. She often doesn't notice what she is wearing much, but this morning she asked for the shirt (I hadn't washed it yet, but I'm getting right on that!) Other girls like The Little Mermaid (although she's a little out of date with it), so I am thinking it could be a Halloween costume, or a source of toys. It's something she can share with the larger world.

And, if I might be totally frank, it keeps her happy. It can be near impossible to keep Janey happy all day. She is not interested in toys, most of the time, she will listen to me read to her only about a book a day, she doesn't entertain herself at all, except in odd ways like biting on things. So having her watch a movie is a way to keep her mind from completely being off-line in her own world, and it allows us a few minutes to regroup, do some housework, spend a little time with the boys, while still keeping Janey in view. And although I started motherhood as the kind of parent determined TV would play a very small role in my childrens' lives---there would not be time with all our creative block play, read-aloud marathon sessions, art projects and the like---I have been worn down by Janey. If she is happy, I am happy. I doubt many people could take as much as a day with Janey without reaching the same conclusion.

So, Ariel and the gang of Care Bears---live long and prosper.

The crying white monster on Yo Gabba Gabba

                                                      A NOTE!
For some reason, I've figured out that these pictures come up very high in the Google Images search for pictures of Yo Gabba Gabba.  I hope if you've found them that way, you don't mind that this isn't really a Yo Gabba Gabba blog!  It's a blog about my daughter with autism.  If you'd like to learn more about life with a child with autism, this post----  link --- is a bit of a sum-up I posted recently. Thanks!

Janey's latest passion is Yo Gabba Gabba. For the uninitiated, Yo Gabba Gabba is one seriously weird TV show. It's the kind of TV show I could picture being watched on college campuses after, well, illegal mind altering. It is about a guy, DJ Lance Rock, and his gang of toys that come to life, assorted odd little guys. There's lots of music by alternative type bands, lots of far out animation and weird cut scenes. It's the kind of show you watch the first time and think "what the heck?" But after time, it grows on you.

My favorite part of the show is the very, very simple social lessons it teaches. I think someone involved in the show must have a child with autism, or understand autistic kids, because the lessons are taught in the way we have to teach Janey. No long fables, no coming to your own conclusions, no vagueness. They are saying like "Don't Bite Your Friends", "Don't Hit Your Friends", "Don't Say Mean Things to Our Friends", etc. They are sung over and over, and illustrated with very simple little scenes---one of the monsters gets over-excited and bites his friend, one of the guys hits the other and so on.

And there's an extremely weird character that's on a few shows that truly impresses me, in an off-beat way. It's a crying monster, Gooble. The monster is tall and white and obviously very sad. The other characters do ask why he cries all the time, but DJ Lance Rock pretty much tells them---we don't know, but we will still be nice to him. He's our friend.

It struck me seeing this how very, very rare it is on kids shows to see an emotionally different child. Kids shows are chock full of lessons about not treating people who LOOK different than us differently. Any kid watching TV much at all will learn that lesson a thousand times over. We learn also about kids in wheelchairs, kids that can't see or can't hear, and kids that talk different languages. But when, ever, do we learn that some kids ACT differently? And act differently FULL TIME, not just shows about kids having a bad day and crying and then it gets figured out and fixed? I don't think much, ever.

Janey cries a lot. There are days she cries most all day. She is a lot like Gooble that way. We usually don't know why she is crying. Kids have asked me that, and I don't have an answer, except just that Janey is that way, sometimes. Other days, Janey laughs all day with no reason, or sings the same song over and over, or looks blankly into space, or plays with her hands. This isn't an easy, 20 minute show, problem. It's not that someone took away her toy and she is sad about it, or that she is not feeling good. The emotional displays are part of her. So it amazed me, thrilled me, that a show actually seemed to get that kids need to learn that. It's a great, great lesson. We are all different, not just physically or in terms of abilities, but in terms of how we act. I'd love to see more kids TV that addresses that. If the rise of autism is true, I would bet it's a huge growth market for TV.

Meanwhile, we'll be enjoying the inspired weirdness of Gooble and the rest of the gang.

Talking like Charlie Brown's parents

Lately Janey has gotten very into watching Curious George. I've been unsure why---it's not the kind of show she usually likes. There's no music or dancing, and it's a little plot-full, and seems to focus on math and science. But she loves it. It struck me today that what she likes might be how George talks. He talks like a real monkey would talk, with monkey sounds. It made me think of some other media Janey likes. She likes Teletubbies quite a bit, with their extremely simplified and badly pronounced style of talking, and she loves to watch me play Animal Crossing, in which the animals talk a speech-like nonsense. In all three, there is talking that doesn't have actual meaning for the most part. I think that might be relaxing for her to listen to. She can hear speech patterns, but she doesn't have to try to decipher what she is hearing. She HEARS speech just fine, as shown by her pitch-perfect echolalia, but how much she really understands is hard to say. She does have a high level of sensitivity to emotion in speech. If we say something even jokingly to each other in an angry or sad tone, she starts to cry. If we sound very happy, it usually make her happy, unless we sound TOO happy, then she gets a little overwhelmed. So maybe the Charlie Brown Parent type speech is easier to practice on---she can just work on hearing the tone and the rhythm, and not the meaning. Maybe that's part of why she likes music too, for the same reason some people don't like it when they can't understand lyrics. You don't have to completely understand lyrics to enjoy a song.

It makes me think if she could learn to read, she'd probably like it. That's like the opposite of Charlie Brown Parent talk---it's just the meaning of the words, without having to listen to the tone. Or maybe she would respond to a computer style voice reading, without any emotion or varying rhythm. It's all interesting to try to figure out, but I wish I could figure it out a little better. It's hard to see how frustrated she gets, or how scared when she thinks people are upset around her and she has no idea what they are upset about. It's hard sometimes hearing her echo speech, if I think about how that is an attempt to figure it out, to maybe save what she's heard for later processing, or for a clip to use in a situation she thinks it will work for. It make me think about how much we can take talking and understanding and conversation for granted. I see 2 and 3 year olds talking to their mothers in stores and can get all teary, because they get their points across so well, and sometimes when the mothers don't pay attention to them, or seem annoyed with having to answer questions, I just want to scream at them "Don't you know what a miracle you are seeing? Don't you realize how wonderful it is to have a child that can communicate like that?" And I know how wonderful it is that I have two children that can talk my ears off, and argue skillfully, and banter with the best of them. I'll never take it for granted, I hope.

Think about what you CAN do...

This morning, Janey was watching a show she likes, Ni Hao, Kai-Lan. There is a little social message to every episode, and this one included a song to illustrate the point "Don't think about what you CAN'T do, think about what you CAN do!" It made me think about what Janey can do, and reminded me to be grateful for those things.

She can walk---there was a time when she wasn't walking at nearly two years that we weren't sure that would happen. She can see and hear---very well, from what we can tell. She can eat and breathe on her own---I know kids that need help with those things. She can talk a little---not every child with autism functioning at her level or higher even can talk at all. She can hug us and smile and be happy. She can express her needs and wants on a basic level. She can sing and enjoy music. She is healthy. She can dance and jump and splash in puddles. She can look at books. She can pat our cats. There's a lot she can do.

Now, don't worry, I'm not turning into a happy, cheerful, everything is a blessing blogger. That's not me. But from being part of those on the slow boat to Holland (if you travel with me, you know what that means), I've gotten to meet a lot of families with kids that have a lot of different abilities and disabilities, and I know very well that I have a lot to be thankful for. As my friend Maryellen said when I talked to her about this today, that doesn't mean it's easy, or make it easier, but it makes me keep in mind the things I need to never take for granted.

A day's worth of talking

I thought I would try to write down everything Janey said in my presence today, to illustrate what her talking is really like, and to save for myself to see if it changes over time. I'm not sure I got everything, but I got a good sample. I'll divide it into types...

Asking for things---

"I want Baby Einstein"
"I want Cat in the Hat"
"I want The Kangaroo Hop" (a song on a Pooh video)
"I want straw box. YES!" (she sometimes adds on the yes to illustrate how I should answer)
"Disney Sing-A-Long" (she leaves out the I Want a lot too)
"Goldfish"
"Chocolate Bunny"
"Toothbrush! I want Toothbrush!"
"I want go see Pino" (Pino is her uncle that lives upstairs)

Delayed echolalia----(most all of this was on the way home from school in the car, and most of these lines were from The Cat in the Hat Knows a Lot about That, a current favorite.)

"With no chance of relief"
"It's me, the Cat in the Hat!"
"We just need an idea"
"I can't hear ANYTHING"
"Not MY kind of food"
"I can hear the bats" (this one was after an ambulance went by, and at first I thought it was in reference to that, but then she said it about 40 more times on the way home)
"Looking for rabbit droppings" (I have no idea where this one came from!)

Lines she has learned, but used properly

"I don't like it" (this was in the hall in the morning at school, when it was loud. I told one of her teachers that she said this, and they told me it was something they had worked on yesterday, saying that when she didn't like something. I was happy with that one)

regular echolalia
"I'm proud of you" (when I said that, because I was proud she said "I don't like it"!)
"Do you want cheese?"
"You are being pretty silly"
"Hippity hop out of the car"
(these are all right after I said the same thing, repeated back in the same tone)

Maybe original speech

"The disk is white" (this was interesting---she asked for Disney Sing-a-long, which I put on, but then said that, and brought me a Baby Einstein disk, which was indeed white. It's pretty rare for her to say something like that)

Overall, a pretty good representative sampling of how she talks. Mostly, she asks for food or videos, or repeats lines from books, videos, things we say, etc. The Cat in the Hat things she said on the way home were all said many, many times during the 25 minute drive, and always in the same tone and with the same emphasis. I was encouraged by the "I don't like it" and "The disk is white" today. I'm struck by how very little she says, if any, passes along information or asks for information. Or asks for anything abstract, although she does often say "I want snuggle in Mama's bed" when she's upset.

I never know how to reply to the delayed echolalia. Should I ignore it, as it's not really useful speech? Should I say it back to her? Should I act like it's a serious comment or question? I do that a lot, like when she said "I can't hear ANYTHING!", I say "Is it too noisy in here? Are the sounds too quiet? Why can't you hear?" as if I thought she was really commenting on her hearing---just to try (in vain) to spark conversation. Or should I try to figure out why she's saying that particular thing at that particular time, and work with that, as when she said "I can hear the bats"? I think that was originally sparked by the odd sounding ambulance, which was making an odd hollow sound---maybe it sounded like the bats did on her show. I asked her that "Did something make you think about bats and how they sound?" but of course got no reply. I get a little frustrated with the endless phrases, because I don't know what the best way to respond is, how to work on turning them into useful speech.

I do know how lucky I am that Janey talks at all, and I am very, very grateful for that. I know other girls with autism function overall at a lot higher level than her, and don't speak, and I keep that in mind every time I hear her voice.

Summer is STILL almost over

It seems sometimes like summer will last forever, which in my mind is NOT a good thing. I really have never, ever liked summer, and I still don't. I don't like the heat, the unstructured time, the isolation it seems to bring, any of it. I am always happier when things are in a routine.

William started high school on Thursday, and Freddy will start Boston Latin School (7th grade) this coming Thursday, and Janey will finally start kindergarten on the 14th. I hope the year goes well. She is in the class I wanted her to be in. More and more I can't really picture her fitting well into a classroom routine, since K2 will be a bit more structured than K1 or K0. Maybe she will surprise me. I worry about her biting at school, or crying until they don't know what to do and call me, or wetting through her pull-up, or all sorts of things. I hope she learns and has fun. I am very much looking forward to days to myself, getting more work done, etc.

Janey used the regular potty today, not to pee of course. We have more warning of the other bathroom need. Tony got her a insert seat and she used that well, but of course we put her on the potty, it wasn't like an independent use.

She has starting eating all her clothes, like William used to a long time ago. Her tops are full of holes.

She has gotten into Barney now, and likes him more than Kipper. I am already tired of the few videos we can find from when the boys were little. I guess it fits into her likes---lots of singing and dancing.