Another sleepless night, through various filters...

The facts---Janey again had a sleepless night.  She was up from 11 pm to 5 am.  I'm a little slaphappy.  Here's a few takes on the night....

The completely supportive of my autistic daughter take---

Janey is communicating to me that she has decided to be nocturnal.  I celebrate and support her in this choice!  We will rearrange our schedules to accommodate her.  Tony will probably have to quit his job, and I'll sleep all day and stay up all night.  She also has indicated by putting on her shoes in the night and trying to unlock the doors to outside that she wants to go someplace during her wakeful nights.  We will put all our resources into figuring out where it is she desires to go, and will of course take her there.  It's wonderful to have her communicating all this to us!

The completely self-centered mother take---

I can't take this much longer!  Why is Janey doing this to me?  Why am I being tortured?  I have to find a way to make her sleep so I don't have to go through this any more!  And now, I can't even close my eyes for a second as she is constantly trying to "elope" out the door?  What fresh hell is this?

The scientific approach---

I am going to analyze the last few days and attempt to form a theory of Janey's sleeplessness.  Is she consuming something with caffeine?  Has her evening routine been disrupted?  Could she be experiencing pre-puberty hormonal changes?  I will try changing a few variables and observe the results.  With careful work, we should have this figured in a year or two.

The sleep-addled mind approach---

Wahhh?  Awake again?  Janey, please go back to sleep.  We aren't eating right now.  What?  What's going on?  Janey, take off your shoes.  Stop trying to open the door.  Tony, why don't you go upstairs to sleep so only one of us has to stay awake.  (3 hours later)  William, please wake up and go get your father.  I can't stay awake any longer and I can't leave Janey for a second.  Oh, hi, Tony.  Thanks for taking over....It's a big...zzzzzzzzzzzzzzzzzz.

The tough love approach---

Janey, you are going to get in that bed right now and close your eyes and sleep.  I'm not putting up with any more of this foolishness.  You aren't eating anything, you aren't watching videos, you aren't listening to any music.  You are SLEEPING!  Don't you dare get off that bed!  Don't you dare try to open that door!  You get back in bed!  (inner despair on realizing that Janey could care less if I sound angry and firm, because she doesn't care about pleasing me and knows there really isn't any punishment that works for her, then tiredness takes over and I go right back to the non-working rant)  You darn well better listen to me, young lady!

The hybrid approach---

Take a little of each above.  Mix them together in random form.  Hope against hope something works.  Realize nothing is working.  Wish that there was some magical new way to handle this.  Realize there isn't.  Spend the day in a half-awake daze.  Have hope tonight will be better, as hope springs eternal.

The day after not sleeping

The day after?  A day that feels like a lost day.  Janey wakes at 7 am, ready to go.  She is a little grouchy, but not severely.  She has a cheery ride to school, listening to her favorite song lately, The Battle Hymn of the Republic, at least until we get to a version she doesn't like, which causes her to scream like she's in agony.  We are almost at school anyway, thankfully.  I warn her teachers about her lack of sleep, in case she gets sleepy, but I know she probably won't.  I go home, and through sheer force make myself do the minimum I need to do---some laundry, some dishes, some packing things to mail.  I wouldn't even do those, but the boys have activities all the time that require certain clothes, and when I slack off, they have desperate mornings looking for what they need.  I try to keep my nap at a minimum.  Napping lately makes me depressed.  When I wake up, I feel disoriented, like someone has stolen time from me.  Tony picks up Janey and brings her home.  She is in a bad mood.  She eats a lot, as she has been lately, but as of right now, 7 pm, doesn't seem sleepy.  I don't know how that is possible.  She was up from 11 pm to 3 am.  My mind is a hazy cloud.

When we have days and nights like this, the task of raising Janey feels almost impossible.  It feels like it will defeat us.  I have to make myself keep the good times in mind, the times that Janey is happy and fun to be with and although vastly different than most girls her age, not necessarily tougher to be a parent to than any other child.  Those times are great.  But when we are sleep deprived and Janey is crying or hysterical or manic, those times fade in our mind and all we can see the present and the future, the present so tough we can barely go on, the future looking far from bright.

I don't like to be discouraging here.  I know people read this that are just starting their journey of autism parenting.  My story, our story, is not everyone's story.  Sometimes I am tempted to leave out days like this in telling our story, but that is not honest. I don't think it's fair to Janey, or to the other families out there, to pretend or to be a Pollyanna.  Hopefully, the truth tomorrow and in many days in the future will make for more upbeat reading.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

Responding to delayed echolalia

Most of what Janey says is delayed echolalia. She talks mainly in quotes, from videos, songs, from stories or poems she's heard, and less frequency, from actual speech of parents, siblings, teachers, etc.  It's always been very tough for me to figure out how to respond to her delayed echolalia.  I've read all I can on this, and asked a lot of people with knowledge of autism, and have gotten a variety of answers.  Some sources say to ignore the DE, which just feels wrong to me.  Others say to respond to what it seems like Janey is TRYING to say, for example, if she quotes part of a video about eating, to offer her food or ask if she is hungry.  I've also read I should point out that she is quoting, and try hard to get her to say something original.  None of those idea feel totally right to me, and of course, it's probably a case where NOTHING is totally right to do. 

Lately, I've been trying something new.  If I can identify the source of the delayed echolalia at all, and I can remember what comes next, I respond back with that.  For example, Janey quoted a part of an Angelina Ballerina video to me today about telling a lie, from when Angelina tells people her mother is having a baby when she isn't.  I remembered the quote, and said back "I have to admit, when you tell a lie, it's a whopper.  And a little embarrassing", which is what Angelina's parents say to her after her lie is figured out.  The look on Janey's face was enough to make me think I was on the right track.  Janey looked thrilled, like I was really getting her.  I had let her know I knew what she was thinking about, and I added to it.  Janey then said the next line, which I hadn't remembered, and looked at me eagerly, but I didn't have any more memorized.

I think what happened here is that I gave Janey an idea what a conversation feels like.  She said something, I responded with something that related to what she said and added to it.  She looked so happy, like I had figured out what she'd been looking for.  At this point, Janey's speech is not at a point where real conversations can happen often.  But that doesn't probably mean she wouldn't like the good feeling of having a conversation, and maybe somehow the delayed echolalia is partly an attempt to have one.  This also might be why she loves nursery rhymes or predictable fairy tales so much.  They let her start her version of back and forth conversations.

Of course, I wouldn't be me if I didn't have a lot of doubts about whether this kind of response is a good idea.  Am I just encouraging rote reciting?  Am I losing out on an opportunity to work on REAL speech?  What I've told myself back is that it's been many years now, and Janey doesn't seem to be making a lot of progress toward real speech.  At this point, I think the most crucial thing is to let her connect via talking, to keep her interesting in someday talking more usefully.  If I'm always answering her in a way that doesn't let her feel satisfied and happy, I don't think I'm encouraging her to talk.  As often, Janey is showing me what she needs, I think.  When I respond to her quoted speech with the next part of the quote, she gets a look in her eyes I don't often see, a happy, connected look.  She looks right at me, and looks eager to go on with the back and forth quoting.  I think I'm going to go with this approach for a while, and I might spend more time with Mother Goose type reading, to give her more lines to say back and forth that I am familiar with.  As almost always, I'm making it up as I go along.  It's the best I can do with the unique kid I've been given.

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

Standardized Testing For Kids Like Janey?

I read this article yesterday  (thanks, Mary Leonhardt!) about developing standardized testing for the kids like Janey.  I hadn't really understood how the whole No Child Left Behind bit affected kids with severe intellectual disabilities like Janey.  The article explained that it's allowable for 1% of students to be tested in an alternative way---to not have to take the regular state tests, which here in Massachusetts are called the MCAS.  Most students with special needs do have to take the tests---the article estimates that only 10% of special needs students are in the overall 1% that don't have to take the tests.  I don't know officially that Janey is in that 1%, but I am quite sure she will be.  The article discusses a program being developed to modify the regular tests so even that 1% can be tested.

What do I think of this?  Well, my first impulse was that it's crazy.  No matter how much you modify a math test that has concepts on it like algebra or a English test that has you analyze a poem, Janey is not going to get it.  And more importantly, it's a waste of everyone's time and money to work on her to get it.  If you put hour upon hour upon hour into it, you might get her to somehow point to a picture relating to what the poem is about with some degree of accuracy, or parrot back an answer.  And what in the world is the good of that?  That is time and money and energy that could have been spent teaching Janey something she COULD learn---self-help skills, letters, iPad use, things like that.  My second impulse is that this is another example of people not really getting low functioning autism.  There is a larger gap between a child like Janey and some children I know with Down syndrome or higher functioning autism than there is between those children and "typical" children.  I completely believe in including kids that learn differently or more slowly, in having them take the tests with accommodations.  But learning differently or more slowly is very different than not being really able to learn the material at all, or learn it in a way that's going to make a difference long term.

Here's an example.  I have terrible handwriting.  I mean---terrible to the extent of being unreadable.  I always have, although it's gotten worse in this age of keyboards.  Now say there was a test back in my day that required writing an essay.  It would be crazy to say I shouldn't take the test because my writing isn't readable.  That is a case where an accommodation makes complete sense.  I could use a keyboard, or dictate the test, or be given a lot of extra time to try very hard to print the letters in a readable way.  And the result would be meaningful.  It would test my writing ability, without having a disability stand in the way.  (and I'm quite sure in today's world I would have a diagnosis for my inability to write legibly, or to keep an organized and tidy desk or locker)  I would be able to move forward with writing, and use it in my life.  But let's say it was Janey instead.  Janey can't read.  She can't write.  She doesn't consistently know her letters.  She doesn't know what an essay is.  She can't in any meaningful way at all even understand what would be expected for a test like this.  Now, I'm sure you could figure out a way to somehow completely modify the test so she could do LOOK like she was somehow being tested.  You could read her a story and have her point to pictures.  That might look like something useful on paper, but in reality, is it?  Does the test result mean anything?  Does it do anything but satisfy some sort of quota or make a state look good on paper?  I would say---no.  So yes, accommodate if there is something standing in the way of someone showing their skills.  But don't "accommodate" if the skill simply isn't there, and never will be, or won't be unless some huge intermediary steps are taught first.

This reminds me of all the times I've been failed by parenting advice.  Janey and kids like her, the other 1%, don't fit into the regular rules, the regular plans.  Accepting that, and doing the best we can for kids like her without forcing them to being tested in meaningless ways, is how she will move forward.

Unlikely things autism has made me say

We never spill Cheerios all over Freddy's bed.  That's not funny!

We don't eat mayonaisse/ketchup/duck sauce all by itself.

Yes, she's eight.  No, she's not toilet trained.  Yes, I've tried all the methods out there.

No, I haven't put her on a gluten free diet.  

We NEVER take off our seat belt in the car and go into the front seat and hit Mama.

No, we can't go buy chips right now.  It's 3am.

Even if you put on your shoes nicely, we aren't going to the store right now.  It's 4am.

Please go back to sleep.  I'm not talking about chips any more.

Tony, could you just go buy her some damn chips?  It's 5am and I haven't slept.

No, I don't know what caused her autism.  Do you know what caused you to ask questions like that?

No, I don't think vaccines had anything to do with it.

Janey, please, if you make a stinky on the floor, tell Mama or Daddy about it.  Don't make us hunt it out.

If there were all kinds of great free respite services for autism out there, don't you think I'd be using them?

I really appreciate the thought, but a toy with 100 small pieces she could choke on is not really something we need, even if Janey does fall in the age range on the box.

No, I don't know how I do it either.  

That's enough pickled vegetables for today, Janey.

I know your dog wouldn't hurt a fly, but the fact you and others let dogs run free and knock down my daughter who is terrified of dogs has caused us to no longer be able to go to most parks.

Big girls don't take off all their clothes.

We just had two baths today.  That's enough baths.

We don't brush our teeth 20 times a day.

No, Janey doesn't really have any beer on ice and all her rowdy friends aren't coming over tonight.  She just is a Hank Jr. fan who \memorizes songs and sings them at random times.

Thank you, teachers and aides and therapists and staff of Janey's school.  I think I'd be dead without you, without a place to take Janey where I know she's safe and loved.  I wouldn't make it.  Literally.

Janey, I don't think it would be possible for me to love you any more than I do.  I wish you were going to have an easier life.  I wish you could communicate more.  I wish you could tell us what makes you sad.  But that doesn't change the fact that you are one amazing kid.

You catch more flies...

You catch more flies with honey than with vinegar.  That's a phrase I heard often from my mother, and it's a true one, one I try to keep in mind.  Sometimes, with Janey, it can seem like it just doesn't work.  Nothing seems to work---honey, vinegar, being patient, being strict, being anything.  But I was in despair over the seat belt situation, and decided to try some honey therapy.

I thought about what has worked in the past to keep Janey happy in the car.  The unbuckling mostly seems to happen when Janey is upset or restless, and wants something I can't get her while driving or in the car at all.  It follow that if I keep her happy and occupied, she will be more likely to stay in her belt.  So I downloaded a whole bunch of versions of her new favorite song "Turn Your Radio On"  I wish there were more versions even of it out there, but I found 7 or so.  Then I stocked up on her favorite car snacks---Pringles.  I decided that during the drive, we'd keep her music playing and her snacks flowing.  I did that for the last few rides---success!  Janey was happy and content, and no seat belt taking off!  I praised her heavily after each ride, which usually doesn't seem to affect her either way, but in this case, maybe because I had been SO loud and angry about the unbuckling, seems to make her very happy and proud.

I don't pretend the problem is solved, but my point here kind of is that once again, I had to learn the lesson that Janey is not typical, and that I can't always follow typical kid rules with her.  You would really think I'd know that by now.  But I was feeling angry and upset over the seat belt, and I didn't feel like "rewarding" her for bad behavior.  What I wasn't keeping in mind is Janey doesn't think that way.  She doesn't do things to please me, and as a converse, she doesn't do things to make me angry.  She doesn't manipulate, or at least not in that complex a way, I don't think.  She certainly wasn't thinking "I'll be bad with my seatbelt for a few days, so I can get Mama to do anything to keep me happy, and then I'll score some good tunes and snacks" She isn't thinking that way.  I have to, at this point, do what works, without worrying about whether it's Parents Magazine approved, because Janey isn't Parents Magazine approved.  She doesn't follow the rules, so I am sometimes forced not to, either.  I need to be able to drive without fear, and so I will do what it takes.

And in case this way doesn't keep working, I have to thank my great friends, Michelle and Julie, both of whom are sending me different kinds of seat belt locks and harnesses!  I am the luckiest person on earth when it comes to friends, I truly think.  I am humming some Beatles in my head, getting by with a little help from my friends.  It seems appropriate.  At times when I am just plain overwhelmed, when I can't even think straight from stress, my friends have always helped me get by.

So, I'm preparing for today's drive.  We'll listen to some old time gospel and eat ourselves silly on unsuitable snacks, and we'll get by.

Car Trouble

The half hour car drive to and from Janey's school has usually been a good time for us.  We listen to music,  I talk, Janey sometimes talks, we just relax.  However, the last few days have been awful.

It started after school on Monday.  Janey wanted her shoes off, and took them off, which was fine.  But then she said "I want to snuggle on Mama's bed", one of her most common requests, but one she doesn't usually make in the car, in the middle of traffic.  I said "We will when we get home.  We can't snuggle in the car"  From what I can figure, Janey took that to mean we should get out of the car that second, so we could have our snuggle.  This was at the worst point in my drive, where I am in the middle of 4 lanes, two going the other way and one to the right of me going my way, about to turn into a very complicated intersection of 5 major roads, at which I have to get to the left and then across 4 lanes to get to the far right.  It's taken years to get to the point where I'm not panicked every day about it.  So at this point, Janey wanted her shoes back on.  They are shoes which take two hands to get on.  I was stopped at the light, but I still couldn't do it.  Janey was getting hugely upset, screaming and tossing the shoes.  I made a dumb move and tossed the shoes onto the floor of the passenger's front side, where she couldn't get them.  So she did the obvious counter-move, and took off her seatbelt to try to get them.  I screamed at her to put it back on, knowing she couldn't do that.  I had no way on earth of pulling over where I was, or for a bit.  This is city driving.  Luckily, she listened when I said to sit back in her seat---I had visions of her trying to take control of the wheel.  I pulled over as soon as I could, put her shoes on and her seatbelt on, and thankfully, made it home alive.

Fine.  But yesterday, both going to school and coming home, Janey once again took off her seatbelt.  Yesterday morning, it was because I'd committed the crime of not replaying the song she liked for the 5th time, so she decided to come up front and take care of that herself.  Again, me screaming at her to sit back, waiting until I got to a safe place to pull over, putting back on the seatbelt, blah, blah, blah.  I spent the rest of the ride talking to her dramatically about not taking off our seat belts, with lots of talk of "TERRIBLE car accidents" and "Janey getting EXTRA hurt", which was probably not useful for her but I was in a state.  Coming home, I had her go over with me over and over what we NEVER do in the car, and she faithfully repeated we NEVER take off our seatbelts, and that is TOO DANGEROUS, and all.  And about 5 minutes into the drive, she took it off.  She had the courtesy to be startled and try to put it back on when I yelled, but the damage was done.  Again, look for a safe pulling over spot (of which there are extremely few on our drive), pull over, put it back on, lecture, etc.

Lots of issues come up here.  I have no idea how to deal with this.  Janey doesn't truly care if I yell, she doesn't get punishments, she doesn't care about rewards.  She has next to no impulse control.  She wants what she wants, when she wants it.  And she is getting bigger.  I can see a day coming, hopefully not for a few more years, when it will be too dangerous for me to drive her alone, or anyone to drive her alone, and that will put even more limits on our life.  I am probably projecting too much, but it is scary.  I have no idea how I will deal with a Janey as big as I am.  And in the near term, I have to figure out a way to keep the seat belt on.  I will see if there are locks, although I admit it scares and bothers me a little to think of her locked in a restraint in the car.  Is that safe?  I will continue my ineffective lecturing and taking away of treats and videos, both of which I did the last few nights although I am quite certain Janey made no real connection to the car, although she could recite when I asked what she had done that was naughty.  She can recite anything.   That doesn't mean she gets it, or it will come into any play when she is again faced with the situation.  I'm dreading today's drives.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

Watch this video, and read why

Here's a link to a video made by students at Freddy's school, Boston Latin...

video

And here is the amazing part.  The video was filmed by a girl in Freddy's class he knows, and the boy named Paul in the video is a close friend who is also in Freddy's class.  And Freddy never knew, and the other kids never knew, that they shared something with each other.  Each has a younger sibling with autism.  When Paul describes life with his sister (and yes, he ever has a SISTER with autism, rarer still!), it could be Freddy talking.

The video made me cry.  It made me cry for a couple reasons.  One is the truthfulness of the boys talking.  They are not pretending autism is anything but what it is, but the love they have for their sisters is so very apparent.  They are honest about how hard the crying is, the running away---the same things Freddy knows so well about life with Janey.  It also made me cry because I felt less alone, in a way that's a little complex.  I know there are other families out there with autistic children, and autistic girls, but until seeing the video, I didn't know that Freddy knew others like himself.  He didn't either.  Boys his age don't talk about the challenges of life with an autistic sister on a daily basis. That is normal.  But now Freddy knows, and I know, that someone else, actually quite a few someone else's, that he knows well, gets it.  Gets it by living it.  When Freddy got home and I showed him the video, I was crying very, very hard, and not quite even understanding myself why I was, but I think it's the joy of connection---of knowing that you aren't alone, a feeling you all have given me, and now maybe Freddy can feel too.

Can Janey Read?

Janey's ABA instructor today brought up a topic which is something I wonder about now and then.  Can Janey read?  It seems unlikely.  She doesn't know her letters consistently, at least that she ever lets us know, she doesn't speak in full sentences for the most part, and any testing that has been done on her in terms of IQ or functioning level has put her in the severely intellectually disabled range.  But sometimes, there are tantalizing little hints that she might be able to read, at least some.  

Mr. Ken, the ABA instructor, told me about a program on the iPad Janey was using the other day, one that asked to identify objects both with spoken instructions and words on the screen.  He said the sound was turned down, but Janey was getting the answers right.  As we talked, she jumped on the iPad and went to a program which asked her to pick which of 4 scoops of ice cream was the vanilla scoop, again, without sound, and she picked correctly immediately.  Yesterday, one of her classroom teachers wrote that when they spelled out "C-O-O-K-I-E", Janey understood and said "Do you want a cookie?", meaning, of course, that she wanted a cookie.  And over the past year, we've seen little hints of reading, like Janey knowing the difference between videos that were identical except for the name of the video, like Disney sing-a-longs.

If you read all that, you might be thinking "well, it certainly sounds like she can read at least some.  Why does her mother sound so doubtful?"  I think there's a few reasons.  I am always VERY cautious about thinking Janey can do things that she can't.  I want to be sure before I believe.  That is my nature, I guess.  I'm skeptical.  Also, I know that our minds are primed to remember the good guesses and not the bad ones.  We remember all the times Janey seemed to be reading, and not the times she didn't have a clue what she was seeing.  And Janey is not hugely visual.  I think most of her learning is auditory, which would not make her someone, like a lot of kids with autism, that is cued into written words.  And there's her overall level of functioning.  Reading would be a huge step, like a child who had never sat up suddenly running.

But I know it's possible.  I know reading works in mysterious ways.  I have no idea how I learned to read, at 5.  I didn't learn via phonics.  Suddenly, I knew what the words said.  I still don't know how I read.  I do it automatically, and very, very fast---faster than anyone I know.  Janey might be a look-see reader like me.  She might have skipped steps along the way.  And in some ways, reading might be easier than talking for her.  It leaves out the social step, of having to communicate with another person.  You can read straight into your mind.  That also would make it harder to know for sure if she is reading.  Janey would not be inclined to want to impress us with her skills.  She has no desire to please anyone with what she can do.  If we figure out she can read, it might not actually change much, as I am quite sure she won't do it on command.  After all, she can also talk, but her talking is not really communicative, most of time.

With all that being said, I'd be thrilled if Janey somehow did learn to read.  More than almost anything, I can't imagine life without reading.  I read constantly, and I have since that mysterious day at 5 that I somehow started reading.  Reading is magical.  It's a dream I've had for Janey that I barely could let myself hope for.  And I still don't think it's going to completely come true, but even having it be a distant possibility is wonderful to dream of.

"Good night, Daddy!"

Last night, as I was working on getting Janey to sleep, she jumped up and went out to the kitchen where Tony was.  A very common occurrence, usually because she wants to ask for food of some kind, but not this time.  Tony came over to me a few minutes later and said "Did you tell Janey to come tell me good night?" I said I didn't, and he said "She came out here and came up to me and said 'Good night, Daddy!'"  And that is huge.  She has never, ever, ever done something like that spontaneously before.  She sometimes, once in a while, would say something like that if I specifically asked her to, if I said "Go say good night to Daddy", but on her own?  Never!  To say we were thrilled is an understatement.  It's the kind of thing that Mr. Ken, her ABA specialist, and also everyone at school has been working on for years and years, and last night was the latest example that it's finally catching on.  It's a great example of what I need to work on---faith that in time, whether Janey seems to be showing results or not, she will learn.  It's hard to wait until a child is eight to hear them tell you good night for the first time on their own, but I dare say it's a lot sweeter after that long of a wait!

Sleep, Depression and all that jazz

I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will.  I said the other day she never naps, so of course a long nap of hers about ruined this weekend.

Friday night was a little tough.  There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping.  For a while.  She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy.  I'd say it's almost like torture.  I feel desperately tired but I have to make myself stay awake, to keep Janey safe.  I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats.  Janey alternated between crying and hysterically laughing.  We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard.  Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup!  I want sauce (tomato sauce)!  I want noodles!  I want chicken!  I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside!  I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again)  I want shoes on! (which means she wants to go someplace in the car)"  We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good.  And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.  

Usually she's up for the day, but for some reason, not Saturday.  She lay down about 11 and slept right until 2.  We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap.  We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing.  When she got up, though, she was not in a good mood.  It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8.  Now watch that not be the case tonight).  And yes indeed, she was up at 2am.  We gave in pretty much and just got up with her.  We watched TV, including at around 4 a very interesting nature show about Australia.  Janey drifted off around then, and we were back to sleep until about 7.

That's a long story of sleep and not sleep---you are probably asleep now reading it.  And it has induced in me today a huge bout of depressed feelings.  When I have a few nights like that, I get NOTHING done the next day.  I don't get laundry done, work done, cleaning done, dishes done, anything at all.  Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that.  And I sit around and hate myself for being so tired all the time.  I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on.  But I hate days like this.  I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day.  I hate the mess around me that never gets cleaned up, because I never have the energy to do it.  I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome  and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder.  And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.

This isn't my best written entry here, I know.  I am rambling a bit, probably because I can barely keep my eyes open.  But it helps to write.  Thanks for listening, if you've made it this far!

Autistic Meltdowns ---- 3 Ideas

In the no-parenting-book-gets-it world of autism, a lot of figuring out what works is just trial and error.  I was reflecting tonight, after a few meltdowns, that it's actually getting better.  A year ago, the kind of meltdowns Janey had tonight would have lasted much longer and been much more severe.  A lot of that is just Janey getting older, but I think we have learned a little more about what works for her.  I know what works for Janey might not work for any other kid with autism, but I thought it would be worth writing about anyway, just in case!

Idea Number 1----Quiet it all down.  When Janey is melting down, crying, screaming, it creates chaos, both just from her meltdown but also, I've realized, some from our reaction.  It's very hard to stay calm with her kind of meltdowns, which can lead to her hitting herself, biting herself, tossing things, screaming in an ear-piercing way---you probably know what it's like.  So lately, our very first response is to eliminate all other noise that we can.  If the TV is on, we turn it off.  If music is playing, off also.  We talk as little as we can and in as low voices as we can.  I find sometimes actually having everyone but one adult leave helps, just because it keeps us from talking to each other (but the other adult stays close by, because you never know when she will need two of us to keep her safe).  I also turn off lights.  When everything else is calm, it seems to help Janey get control, or at least not be more irritated by the sounds around her.

Idea Number 2 ----  Soothing predictable actions.  With Janey, what I often do is rub her back, or if she is too upset for that, even just tap next to her on the bed or couch, something rhythmic and even.  Once she is quiet enough to make it worth the while, I sometimes sing a lullaby while rubbing her back or tapping, with the same verses being repeated over and over.  I think it gives her something new to focus on that, something that can quiet whatever is inside her mind making her upset.

Idea Number 3  ---  Sleep or eat.  Usually, when Janey loses it, she's in one of two states without realizing it, either hungry or tired.  She doesn't seem to know herself always when she's feeling either of those.  If it's close to bedtime, I do what I can to get her to sleep.  We are lucky in that she falls asleep pretty easily (staying asleep all night is more of the challenge, usually).  If it not bedtime (Janey never naps), we get her eating.  Although she asks for food all the time, when she's really upset, she doesn't seem to realize she's hungry.  So we just get food into her any way we can.  We offer her any of her favorites, we run to the little store nearby to get what she might want, we do whatever we can to feed her.  That works very well, often.

These ideas don't always work.  Sometimes, Janey is going to melt down and we aren't going to be able to do a thing about it.  That is just about as hard to deal with as it always has been, or more hard, really, because Janey is bigger.  But as the years go by, I think we are very slowly learning Janey, and maybe she is learning us, too.

A Good Stretch

Janey is continuing her good stretch.  There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about.  She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class.  She said a set phrase (something like "Look!  The bunny has big ears!") for each page, but she said it in the sweetest way.  That was great.

What makes a stretch good like this?  And what makes a stretch bad?  If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good.  There's a few things I can guess at.  One is routine---vacations are bad, bad news, usually.  Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations.  I'm so glad she has summer school---before that, the summers were very tough.  Another factor, I'm coming to see, is weather.  Good weather and time outside are vital for Janey.  She needs that---the time to feel the fresh air, to have room to move.  And a third is how the rest of us are doing.  Janey picks up hugely on our emotions.  Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects.  If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood.  She is extremely sensitive to tones of voice especially.  She can understand them, if not the words.

Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it.  This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently.  Anything like that that we can do to give her some control over what she sees and hears seems to be very important.  Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants.  I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better.  When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.

Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times.  Life as Janey is probably a very frustrating thing to live, often.  She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level.  I can picture her wanting things she has no way on earth of explaining, and that would make me cry too.  It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.