Daddy's thank you to Janey during trying times

Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.

Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.

Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!

And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.

Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!

Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!

Thank you Janey for making me a better daddy and a happier person!

You are the best Janey!

"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

Janey at 15

It's hard to believe Janey is 15.  Some ages seem like a jump to me of more than a year, and 15 is one of those.  It seems a lot older than 14.  14 still seems like part of childhood.  15 feels like definitely teenager-hood, and not that far from adulthood.  It doesn't seem possible.

So, who is Janey at 15?  By 15, I think you are who you are going to be, to a huge extent.  I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then.  I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent. 

When thinking about who Janey is, I both try and don't try to separate out the autism.  I can't and don't want to totally separate it.  It's a big part of who she is, and an important part.  But it's not ALL of who she is.  There is a lot of her that I am quite sure would be her no matter what.

Janey is a cool person.  She has strong likes and dislikes.  She likes music, but not just any music.  She loves British Invasion 60s music more than anything else.  She also likes most songs with a very strong beat---disco, some country, some dance type music.  She is not a fan of soft rock or slow songs or most of the country I like.  She likes some Broadway music, but not most.

She loves food, most of all what her father makes her.  They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions.  She is the world's hugest salami fan.  She's a food snob.  Rarely does a bite of school lunches pass her lips.  Food needs to be fresh or freshly prepared or expensive!

Janey has gotten more into movies lately, particularly just a few movies.  She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home".  We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back.  Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"

Car rides are still one of Janey's favorite things.  If she had her way, we'd spend most of our days driving about on a car ride.  She seems to love more than anything watching the world go by as she listens to music in the car.

Janey has a temper.  When she's told no about something she wants to do, she is extremely quick to anger, to scream.  More than she used to, though, she does get over it.  That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.

A sense of humor is one of the best things about Janey.  She loves to laugh with and at us.  She is so happy when we are all happy.  She rewards funny little songs and sayings with a huge smile and hug.

Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well.  To that person, how would she look?  Well, most people do see her and know that she is not completely typical.  She does some things that look typically autistic, like flapping her arms.  Her speech is not generally in full sentences, unless she is scripting or using echolalia.  It's mostly requests..."Want a car ride?  Want salami?  Want cuddle?"  It's extremely rare she simply comments or states things.  She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions.  We hold her hand most of the time in public, not because she's a runner but because she is unpredictable.  She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.

Janey has grown up a lot over the years.  We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item. 

If you had seen Janey at five or ten, you would probably be surprised at Janey now.  It is why I hope that those with girls like Janey who are younger than her keep up the faith.  My dear friend Michelle told me it would get easier, and she was right.  It did.  Either that, or we changed. 

I don't picture a "typical" Janey much.  A typical Janey would not be Janey.  It would be someone else.  I don't want Janey to be someone else.

But in saying that, I still feel fear.  I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world.  It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone.  I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her.  That is what keeps me up nights.  I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world.  It is why I talk for her.  I feel like I have to let the world know she is part of humankind, just as she is.  Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.

Janey will start high school in 11 days.  I am scared.  I am scared about a long bus ride she will have to take to go to the great program we chose.  I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey.  I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence.  I love her so much.

Janey, thank you for being you.  We have been lucky to have these 15 year with you.  I hope we have many, many more together.

What I can't stand about the mother in "Speechless"

I've only watched the first two episodes of "Speechless", and I don't plan on watching any more. I'm glad that TV is showing someone like the son on the show, in a wheelchair and without verbal speech.  That's not my issue with the show, although I do wish sometimes they'd show someone with trouble communicating that went beyond verbal speech.  The boy on the show has a lot to say and communicates very well, and of course is also funny and sassy and outgoing and so forth.  And there are kids like him---great kids that I've met, very bright kids and adults in wheelchairs that deserve to be seen as the cool people they are.  My issue with the show is the mother.

If you have a child with a disability, there's pretty much only one personality you can ever have if you are being portrayed on TV or in a movie.  You must be a tireless, relentless, fierce, single-minded, aggressive, angry and over the top advocate for your child.  You must be ready to put everything else in your life on a back burner, including your marriage, any other children you might have, your friends, your hobbies---all of it---in order to devote every single second toward the child with a disability.  You are supposed to fight everyone and everything in order to get the best life for your child.  Everything and everybody except your child is a potential roadblock, and you must be ready to mow them down to get what your child needs.  The result will be, of course, that by the end of the movie or run of the TV show, your child will either be "cured" or will be living the best possible life they can---of course doing things that experts said they could never do, of course surprising everyone with how far they have come, of course making you proud and making it clear that the ends justified the means.  The mother on "Speechless" is that kind of mother.

In real life, somehow it must be that mistakes are made here and there when handing out children with disabilities.  Sometimes, instead of the fierce mother they are supposed to get, they get someone like me, someone who avoids confrontation if at all possible, who is not comfortable demanding anything, who regularly takes her eye off the prize and doesn't follow through with every chance to "fix" her child, who is in fact often not even exactly sure what it is she should be fighting for, if she were inclined to fight.

When talking to a friend about my feelings toward "Speechless" and how I didn't find the mold of the fierce mother, she asked me "Well, what is it you think Janey didn't get because you aren't that way?"  That was an excellent question, and the answer was...really nothing.  Of course occasionally I do wish there were programs for Janey that don't exist, but in terms of what she really needs, she has always gotten it.  I am very lucky that way.  I have to thank the Boston public schools for that.  I've had nothing but excellent teachers for her, nothing but caring administrators, aides, therapists, ABA workers, bus drivers...I've been incredibly lucky.  I can't quite say that's been the case with medical issues, but with the schools, I've somehow been able to get by without ever once having a screaming match at a meeting, or even anything close.

Of course, I do know that I've got some advantages.  I speak English, I'm fairly good at understanding the system, I am able to attend meetings without fear of losing a job, I have transportation, I can read---I don't take any of that for granted.  I know and have met mothers that care for their children every bit as much as I do, but because of various issues, can't work within the system as I do.  I think about Tony's mother a lot.  If she had had a child with autism, she wouldn't have known where to start.  She spoke very little English, she didn't drive, she didn't understand the US school system---she would have been lost.

In an ideal world, everyone would have had the great experience I've had with their child's schools.  We don't live in an ideal world.  I know part of why I am able to not be the fierce mother is because of the work of fierce mothers that came before me, that demanded their children get an education at all.  I respect that very much.  However, I think the media has something to answer to in putting out there a stereotype of a fierce mother.  I think it leaves many parents ready for fights that don't have to happen.  It also gives a huge advantage to those with the means and skills and money to hire people to fight for them---lawyers or advocates or the like.  It's why recent investigations in Massachusetts showed a huge gap between what kind of services kids in rich vs. poor school systems get.

My strong feeling is that schools and parents should be a team, working together to give children what they need.  I'm extremely lucky that is what I have experienced.  But if I relied solely on the media to get an idea how I should view the school/home relationship, I'd see it as a battle with the school on one side and me on the other.  And because of this, I think sometimes schools are expecting every mother to be ready to fight that battle.  They might be waiting for demands from parents, and many parents are ready to make those demands.  I feel in many cases, that is how resources are handed out---by seeing who demands them.  That infuriates me.  It makes me sick, really.  What about the parents who don't demand---because that isn't their nature, or because they simply have barriers to understanding what they even COULD demand?  It is horrifying to me to think that their children might not get what they need while the children of those who know how to play the system do.

I'd love to see a TV show where special educators and parents work together, where the incredible dedication and hard work and love of both are shown.  I'd like to see a mother I could relate to in the media, a mother who isn't fierce but still fiercely loves their child.  I'd like to see some teachers and therapists like the ones I've known, like the ones I met with today at Janey's school, who care about my child deeply, who provide her with the best education they can (and provide me with the respite school gives me).  I'd like to see a child on TV with Janey's kind of speechlessness.  Until then, I'll avoid one-dimensional portrayals of special needs mothers.

A drink and a song

Last night, we decided to live it up a little and get some dinner out---some Burger King.  We ordered just what we felt like, because we are like that, living large, you know.  And then we ate it in the scenic lovely parking lot of the mini mall the Burger King was at.  I told Tony as we ate that I knew when I married him he'd take me some special places, and a night like the one we were having certainly proved I was right.

Seriously, though, we enjoyed ourselves.  I was thinking how in some ways, I'm pretty suited to the lifestyle that life with Janey brings.  I am not much into getting dressed and going out, I wouldn't really call myself unsociable, but I'm probably low-sociable, and I am as happy eating in the car in a parking lot as I would be in a fancy restaurant overlooking the ocean, most of the time.  We had a nice meal, joking around and people-watching.

At one point, Janey asked for a drink of Tony's soda.  He had a big diet Coke (he is a diabetic).  We don't usually like Janey to have soda, but in the spirit of a carefree night, we gave it to her without a lot of thought, and she had a nice big draw of it.

When we got home, it was the time Janey usually goes to sleep, about 7:30, but she wasn't sleeping.  She finally did go down about 8:30, which was fine.  In another example of just how we roll, we all went to sleep at that time, which is I have to admit a fairly typical bedtime for us.  We are just not late night people.

At four in the morning, Tony woke me up to say Janey had been up almost all night and it was my turn to take over, so he could get a little sleep before work.  I was happy to, but not happy to hear about the sleepless night.  We've certainly had them at times, but not too often recently.  There's two types of them.  One is the upset, screaming up all night and the other is the cheerful but demanding up all night, and Janey was in the second mode.  Every time Tony drifted into a minute or two of shut-eye (we stay up when Janey's up, but the human body can only take so much not sleeping and we drift off for minutes here and there), Janey had a new request.  So he was not in a good way.

Janey switched over to requesting things from me.  She watched part of "Journey to Joke-a-lot", a Care Bears movie that I think was designed mostly for late night college parties where there might possibly be some non-sobriety going on, due to its many wild colorful scenes of roller coaster type rides going through bizarre landscapes.  Then she asked for another show on the "big TV", but I told her it was time to lie down, and if she couldn't sleep, she could use her iPad.  That was a mistake, as it turned out her iPad was out of charge.  That is something Janey doesn't get at all.  I think she thinks we just every now and then decide to take away the iPad, to show our dominance or something.  We've tried getting her to use it plugged in, but she immediately unplugs it.  So she was ready for a meltdown.

Grasping at straws, and cursing the caffeine in the diet coke, consumed after 12 noon, which we have to be reminded over and over and over results in her not sleeping, I asked her if she wanted me to sing her a song.  She said immediately "Yes!" which startled me, as she isn't usually a direct answerer and she generally isn't that into my singing.  I asked her what song, and she said "Angels we have heard on high!"  Another direct answer, and I knew what it really meant.  I pretended I didn't, and started to sing the carol, and she said "On the big computer!"

For some reason, Angels We Have Heard must always be played through iTunes on the computer, with the visualizer on.  I knew that from the start, and I dragged myself out of bed and put it on.  And we listened and watched, the unseasonable song and the mesmerizing colors and shapes.  We listened together to five versions of the song.  Janey danced next to me.  Some of the versions required me to clap along, which Janey let me know by clapping my hands for me to get me started.  We skipped version six, done by Neil Diamond, and went to version seven, a VeggieTales version, proving that Janey doesn't always have great taste in music.  We wiled away the very early morning hours, until it was time to get ready for school.

I thought, after I'd had a little rest, that like the parking lot dinner, that sometimes what Janey wants and needs is similar to what I'd want and need.  I love hearing many versions of a song, and getting into the light show the computer provides, and aside from not quite wanting to do it when I'd rather be sleeping, I'd enjoyed myself a lot with Janey, having a drink and a song with a friend.  My life today isn't exactly what I'd ever pictured, but whose life ever is?  Life is what happens while we're busy making other plans, to quote John Lennon.  Having a child like Janey isn't in most people's plans, but it's life, and like any life, it has its downs but it also has its nights of drink and song.

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.

If I could ask you, Janey...

What if somehow, I could ask Janey all the things I wonder about her, and she could answer me, answer me clearly and fully?  I have a store of questions a hundred pages long.  Here's a few of them.

Do you like school?   I hear from your teachers if you had a good or bad day, what activities you had, some of what you learn.  But no-one but you can really tell me if you are happy at school, or tell me how you feel about the types of things your brothers told me---what kid in the class annoys you, what lunch is like and who you sat with, a funny thing that happened in class, a moment you felt scared there about something.  I don't have any idea what school really feels like for you.

What makes you like certain movies and TV shows so much?  I certainly know what you like to watch, but I often wonder---why those particular videos or shows?  Why do you watch "The Goofy Movie", with the story of father son bonding and a road trip, over and over?  Why is your favorite Disney movie "Hercules", a movie most people think is one of their weakest offerings?  What is it about that certain episode of Little Bear where Uncle Rusty babysits that makes you want to see it over and over, and makes you scream if I try to put on a new episode?  I would love so much to know what you like about the shows that you like.

When your appendix burst, how did it feel?  How could we have not known how much pain you must have been in?  That one haunts me.  We think Janey's appendix had been ruptured for three days before it was removed.  The pain must have been incredible.  We knew she was sick, enough that we took her twice to the emergency room, but neither us nor the medical professionals at one of the best hospitals in the world knew how serious it was, not until a CAT scan was done.  How could that be?  Do you feel pain differently?  Did you think we did know somehow and just weren't doing anything?

Do you understand at all why people come and go?  You miss Daddy so much every day while he is at work.  Do you have any notion what "work" is, why he has to sometimes leave for the day?  We say your brothers are at college, and you have seen their rooms, but do you get at all why part of the year, they go to live someplace else?  You ask for Auntie Carrie, for Nana and Grandpa, for Auntie Rose.  Do you get that they have their own houses, some of them very far from us?

Why do you scream?  I know there might be all kinds of answers to that one, but what most upsets you?  Why can you be happily watching a movie and suddenly, you scream, like you are in horrible pain?  Are you?  Is it when you don't understand something?  How can we help?

Why do you say "duck" between thoughts?  This is one I wonder about a great deal, although it's not as big an issue as some of the others.  You use the word "duck" like a divider, like a period or a dash, or a repeat sign.  You'll say something like "I know what you mean, but it's just not funny!  DUCK.  I know what you mean, but it's just not funny!  DUCK  You stole my pencil!  DUCK  I can write your name better than you can!"  All quotes from one of your favorite episodes of The Simpsons, but why the Duck in-between parts?  What does it mean?  How did it get started?

What could I do to make your life happier?  That is what I want to know the most, Janey.  I wish you could tell me all the little things and big things that would make you happy.  What could I get for you?  Where do you want to go?  What are your dreams?  Do you have dreams?  I guess at these things; I try as hard as I can to make your life as meaningful as I can.  But the truth is, there is so much about you I just don't know.  I love you so intensely, Janey, but I often feel like I have failed you.  Without the ability to communicate verbally at more than a basic level, without another form of communication, I am so often left guessing.  I can read about people with autism that have learned to communicate, and I can get some ideas, but they are not you, Janey.  You are, like every person with autism, like every person in the world,  a unique, fascinating, complex person, and in so many ways, Janey, I don't know you.

The Car Wash Movie Theater

A few lots down from our house, there is a gas station with a car wash.  The car was is kind of a high tech one, and when it washes cars at night, lights flash.  We can't really see it unless we are in the back yard, and I'd never thought much about it, or considered that Janey had thought about it at all.

However, a few nights ago, we were in the back yard in the evening, and Janey suddenly said "Want to go to that movie?"  We were confused, and thought maybe she meant she wanted to watch a video inside.  But she persisted "Want to go to that movie right there over there?"  She isn't much for pointing, but she was looking in the direction of the car wash.  We asked "Do you mean where those lights are over there?" and she said "Yes!  Want to go to the movie over there?"

The result of a search for an image combining "Car Wash" with "movie"!

We were quite surprised.  I had no idea Janey would have any idea what a drive-in movie would look like.  She's only been to a regular movie theater once, and it looked nothing at all like the car wash.  But the car wash DID look a great deal like a drive-in movie would look at night, viewed from a little way away.  It blew my mind.  Once again, Janey had shown us that she understands and knows about far more than we realize.

I wonder how long Janey had thought that there was a movie showing right down the street from us, one that for some reason we had never seen fit to take her to or mention.  It made me think, as I do more and more, about how confusing and overwhelming it must be to be Janey.  There are so many things she understands more than we realize, but so much she doesn't understand, and the combination probably makes the world feel like an arbitrary and unpredictable place.

Janey's brother William came home from college two days ago.  Janey was asleep when he got home, and she went to school before he was up the next morning, so the first time she saw him was when she got home from school.  She was overcome with emotion.  She hugged him over and over, back away, just looked at him, and then hugged him again.  It was like seeing someone greet a soldier home from war.  I thought about how little I think she understands that he is at college---how she probably has no real idea what college even is.  In her eyes, people disappear at times, for days or for months, to go to places that have names but that she can't picture at all---"college", "work", "high school".  They must seem to come and leave at random times.  I think it's why she gets so upset if Tony is home even a little late from work, or sometimes if it's home early.  She has figured out his schedule, and that feels like something to grasp in the uncertainly.

As I slowly try to understand Janey's perception of the world, there are still always mysteries I can't figure out.  After Janey hugged William, she kept saying "There is my mother!  There is my mother!"  I was near them, but I don't think she was just saying that.  Somehow, she was trying to tell William something about me.  Maybe she was realizing that I am William's mother too, or saying that William and I look alike, which we do to some extent.  Maybe she wanted to make sure I was joining in the excitement, or commenting on how we were all together again.  I don't know.  I wish I did.

I think if I could better understand how Janey sees the world, I could better help her deal with it.  I could try to find a way to explain to her where people go when they aren't here.  I could take her to the car wash and show her it's not a movie.  I could talk to her about whatever she was trying to say about William and me.  I would hope she'd be happier in a world she better understood, but it's a huge challenge to find ways to figure out what she is thinking, what she grasps and doesn't grasp.  She is a career, a life's work, a joy and a puzzle.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.

A Cold Day in Hell

Last night, when the word came that Boston was calling off school for today due to very cold temperatures, I immediately braced myself.  A day off in the middle of the week, for whatever reason, seems like the thing that sets Janey off more than any other.  You might recall how Veteran's Day set off a recent chain of events---yeah.  So I was not happy.  I know all the arguments for calling off the day, I know it was probably the right thing to do, I certainly don't want any children getting frostbitten waiting for buses---none of that.  But thinking strictly of Janey, I was not happy.

The day was hellish.  I have to say---you know how sometimes you think a day is going to be bad but it turns out okay?  That wasn't today.  Janey spent huge parts of the day screaming, just plain screaming her lungs out.  There were a few hours in the middle of the day with slightly less screaming, and the boys helped all they could---thank goodness they were home---but mostly, it was pure hell.  Before the boys were awake, by 10 am, Janey had hit me many times, bitten me a few times, bitten her arm over and over, screamed for a couple hours and generally worn out all my reserves for the day.

Lest it seem like I didn't try to distract her, I'll say that before 10 I also had read her about 15 books.  She has lost interest in TV or videos lately, but I tried, with putting on "Annie" and sitting with her and watching it, to find something she'd enjoy.  I had made her another breakfast, after Tony made her one before he left.  I had played toys with her, I had sung with her, I had looked at birds with her, I'd done everything I could think of to do except go outside, which seemed ill-advised to do when the temp was 2 below and there was a strong wind.   The longest any of this kept her happy was about 5 minutes in a row.

Tony got out of work a bit early, and we had hopes she'd feel better when he got home, but she didn't.  She has been screaming now for an hour.  I am writing to keep myself sane.

We are at a loss lately.  The new medication doesn't seem to be doing a thing.  In fact, she seems less happy than ever.  It is especially supposed to treat mania, and maybe mania was all that made her happy.  She is not enjoying life.  The aggression is as bad as ever.  The screaming is worse than usual.  And we feel out of options.

I got the bill for the stay at Bradley Hospital.  Our insurance covered it pretty well, unlike the Children's Hospital stay, but if we had had to pay out of pocket, it would have cost more than $80,000.  For what?  I noticed on the bill that only about $200 of that was for psychiatric care.  From what I know of costs for that, that is less than an hour.  The rest was almost all for housing.  I know there were nurses there, I know the milieu therapists were trained and worked well with kids, but the stay was not something that helped long term.  It certainly held her in a time of crisis, but knowing now exactly what is out there for help in a time of crisis---well, there isn't much.  And to get what there is requires the horrific "boarding" at the regular hospital first.

Hopefully, tomorrow will be a school day.  And hopefully, the fact it's just one day and then weekend won't cause too many problems.  Hopefully, we will all regroup and keep on trying to do what we can to help Janey.  Hopefully, someday, somehow, she will be happier.

How's It Going? Various Answers...

I saw an acquaintance the other day in a store, and she asked "How's it going?"  I of course gave the answer you give in that circumstance---"Good!  How are you?"  But when I got home, I started thinking about how I am really doing.  There are two answers to that.

The first is the raw one.  How's it going?  Not well, really.  I am feeling more overwhelmed than usual lately.  This is probably directly related to Janey's sleep.  It's been awful lately.  Last night she slept from 1:30am to 5am.  That was it.  She is understandably crazy today, but still won't sleep.  We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful.  A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.

Her behavior has been volatile lately also.  It's the tough time of year, between regular school and summer school, when there is no rhythm to the days.  Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good.  Janey freaked out regularly, and her freaking out is tougher and tougher.  It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun.  And of course screaming---loud, insane sounding screaming.  

I could do better with her, but frankly, a lot of days I'm too tired.  If I don't sleep, I am not in a good way.  This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state.  I just try to get through the day.  So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me.  The other day we went to a movie that the local autism agency, TILL, hosted.  It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes.  That didn't exactly eat up the day, but I felt better having done SOMETHING with her.  

I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted.  I am out of enthusiasm, at least for now.  I am not as able to rally any more.  I love Janey more than ever, and that love makes it even harder, because I am sad for her.  I am sad that she is so unhappy.  I am sad she is not making progress.  I am sad at the limits autism has placed on her life.  

However, the second answer to the How's It Going question is the one I need to focus on.  The boys like to talk about first world problems, and they are so right.  We have enough to eat.  We have a place to live.  We have medical care.  We have schools.  I have a wonderful husband with a steady job.  I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future.  I have books and word games and thousands of movies and TV shows I've never seen and would like to see.  I have my cats.  I have some amazing friends.  I have so many things that many people in this world will never have.  And to quote the kids again, YOLO.  You only live once.  Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going.  I can't say I always will.  I can't say I always remember how lucky I am.  Especially when I am bone tired, I forget, and I need to try not to.

Small Triumphs

I won't lie---the last week has been a tough one.  Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly.  I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough.  We really don't know what's up.  It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.

But today, there were a few small triumphs, in the middle of a day of screaming and crying.

The first was a good library trip.  Last time at the library, which I wrote about, Janey had a fit.  Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks.  I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library).  Janey cried most of the way to the library, so I wasn't hopeful.  But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect.  So off to the CVS we went.  I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something.  She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted.  She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones.  I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat.  It felt nice.

When we got home, I had some packing of books I'd sold that I very much needed to do.  I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight.  I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey.  I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess.  I was thrilled.  She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her.  She got a big high five (after hand washing).

Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing.  I told her that if she could be good at the post office, we'd get a doughnut.  That was probably too much for today.  She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her.  When we got out, she looked at me with tears in her eyes and said "David Donald Do?  Dreamed a dozen donuts and a duck dog too?"  which is a quote from Dr. Seuss's ABCs.  I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.

I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away.  A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so.  That goes against so much of what is my instinct, but it seemed like she was trying.  I praised her a lot for even a minute of non-crying.

Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow.  I'm going to keep trying to pick out the good from even the tougher days.

Janey Live on Video, singing and talking!

I've had a few people ask if I could post a video of Janey's singing.  I've always had a hard time catching her in a true singing mood, and I've made some attempts that didn't work out.  But this afternoon, she was in the backyard running around and singing eagerly, so I grabbed my camera and started filming.  Hopefully, the link to YouTube will work and Janey can make her debut here!

There are a few things in the video that are very typical of Janey.  One is the pacing around.  I had to follow her back and forth across the back yard to stay somewhere near her.  Janey does this the whole time she is outside, pretty much.  Another is how I prime her for the songs.  I sing the first line or so, and she finishes, if she likes the song and wants to.  She sings lots of songs on her own, but in order to get some sung for the video, it was easier to do the priming!  You will also notice how she completely ignores my direct questions, like asking if she is ready to go inside, and my direct requests, like at the end when I asked her to say goodbye.  This is pretty common!  It's only the last month or so I sometimes get a "yes" answer to yes or no questions, but opened ended questions are just about never answered.

You can also see toward the end that Janey is getting upset, or you might not see that, but she is.  When I asked her to sing "She'll be Coming Round the Mountain", she started singing a bit in her frantic voice, and then she was repeating "Hickory Dickory Dock" over and over.  I could tell she'd had enough, so I ended the video.

Janey probably knows thousands of songs by heart and by tune.  She often makes connections between songs based on lyrics or on melody, or tone.  I wish I could think of the name of the song, but I played something in the car a few weeks ago, and when Janey wanted it repeated, she said "I want that Grinch song"  The voice of the singer and the general tone of the song were very similar to "You're a Mean One, Mr. Grinch", although the song didn't have the same melody or words at all.  She has started adding her own touch a little to songs, like giving them an operatic style finish.  She isn't at her best in this video, due to mostly being concentrated on running around, but I wanted to show how her talking and singing worked a bit, and how she moves.  I hope it's helpful or at least interesting to you all!

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

Hodge Podge Lodge

The title is a TV show that was on when I was very young, in which a woman who to me looked like a witch had kids over to her hut in the woods and showed them nature things, like cocoons.  But that doesn't really have to do with this post, although I always wonder if anyone but me remembers the show, or if I just dreamt it.  I meant the hodge podge part, a few little notes about this and that to do with Janey.

HP1----  Janey has gotten into Snow White and the Seven Dwarfs.  I've never really watched it before now, and it's a beautifully done movie.  It certainly has scary parts, like The Little Mermaid, but somehow they seem less terrifying, and I'm glad she made the change.  Today she brought it over to me, and wanted to watch it, but couldn't think of the name.  She spoke in that special tone she uses when she is having to think very hard about what she is saying, and said "I want Beauty and the Beast"  Which is very strange, as she's never seen that movie, only clips from it on singalongs.  But it's another Disney movie, and I wonder how the two got connected in her mind.

HP2 ----  This morning, when walking from our parking spot to school, Janey pulled me into a grassy lot near her school, because there were piles of fallen leaves there.  She wanted to kick them as we walked.  I loved that.  It's a universally fun thing to do, and one of those moments where the autism makes no difference.

HP3  ---  A few days ago, Janey was in silent mode.  That's an unusual mode for her, I mean a really silent mode.  She is usually noisy---either laughing, crying, echolalia talking, singing, pretty loud for a mostly non-verbal gal.  But those days she was just silent.  When she did talk to ask for something, she whispered it to me in a barely audible voice.  I really didn't like the silent days.  It threw me into a bit of a depression.  I'm not sure why.  Our family is fairly loud.  Not me on my own, but I've become loud in defense.  We shout from room to room, have animated "discussions" often, sing to ourselves---there are not a lot of quiet moments around here.  And I guess Janey usually fits right in with that.  Having her be so quiet scared me somehow.  She seemed very lost.

HP4  ----  I wonder how often Janey pretends not to know something to get out of doing things.  I used to not think this at all.  But today for some reason, I was showing her an app with aliens, where you had to match the color of the aliens to a space ship that showed up to take them away.  She wasn't a bit interested. She just kept asking for Angelina Ballerina.  But for some reason, I wanted her to try it.  So I said "First match the blue alien to the spaceship, and then I'll put it on" And she did it in a second, with a look on her face I am very familiar with from the boys---the look of "O---KAY!  I'll do it to shut you up"  She had no problem at all with it.  I was surprised, although I know she can do color matching, but the ease and the look were something else again.

HP5  ---  Not that I ever plan on getting a nanny, but reading about the horrible situation in NYC where a nanny killed two of the children she was charged with caring for, all I could think about was why it's so important to me to have Janey be in my care, my husband's care or her school's care, or that of very trusted family and friends.  Not that everyone doesn't feel that way.  But caring for Janey can be incredibly frustrating.  You have to love her to care for her well.  I couldn't hire someone to do that.  And at school, there are many hands to help.  Everyone who cares for Janey there loves her, but if they get overwhelmed, there is someone else there to take her for a bit.  It's another thing that makes autism parenting tough---I know Janey could try the patience of saints sometimes, and that I need to always make sure she is with someone I can completely, totally, wholeheartedly trust.

HP6  ---  I just did what I am always telling Tony not to do---let Janey have a little chocolate after noontime.  No sleep tonight!

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.