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Wednesday, April 30, 2014

Starting the New School

Today was the day.  After months of decisions, meetings, plans, was the day Janey started at her new school, the Lee Elementary School, in an all-autism classroom.  Those of you who have been reading my blog a while know what a very, very tough decision this was for us.  But after talking to and thinking with many people who care about Janey, we decided it was the right decision for now.  Janey deserves the chance to see how she can do when in an atmosphere specifically for kids like her.  Leaving the Henderson school, for now, is one of the hardest things I've ever had to do in my life.  But we are hopeful it's not for good, and today, I am feeling hopeful about the Lee School.

The above picture shows Janey getting on a school bus for the first time ever (except field trips).  She got on like she'd done it all her life!  We were terrified, but not her!  The bus comes VERY early (6:51am) and so we had to wake her up and get her ready MUCH earlier than she is used to (her old school is what they call here in Boston a late school---it starts at 9:15, but the Lee School is an early school, starting at 7:20)  She work up a bit reluctantly, but went out to wait for the bus willingly, and when it showed up, she hopped right on!  The bus was fairly full (not always the case here in Boston) and there was an aide to help her get settled.

Tony and I then followed the bus to her school.  We parked and walked over to where the buses were, and were there when she got off the bus.  She looked a little stunned just then, but immediately many teachers and other adults were around to help her and us.  Her teacher was out waiting for the bus, so we got to meet her right away.  She seemed great!  She offered to have us come up to the classroom with Janey and her, which we did.

Janey's only moment of upset while we were there was when we went up stairs to get to her room.  The Henderson is one floor, and I think stairs to school seemed odd to her.  But after a moment, she readily went up, and into her room.  The room was lovely---nicer than the other rooms I'd seen at that school---tidy and open and inviting.  There are 9 kids in the class, 3 of which (including Janey) are girls---unusual in an autism classroom!  A few of the boys were already there, and one cute guy said "Hey!  I know her!  I know her from the bus!" as if they were long time friends and not kids who had shared a bus a few minutes before for the first time!  We loved that.  Janey looked very happy in the room.  She noticed immediately that the teacher was pregnant (which I hadn't noticed) and went over to have a look at her belly, something she loves to do!  After just a minute or two in the room, the ABA specialist that works with Janey, Michelle, came in to be with Janey also, something that meant a great deal to me---a familiar face for Janey and for us.  Tony and I left after only 5 minutes or so, feeling confident Janey was in good hands.

So, so far so good.  I think things went as well as they did in large part because Janey's old school worked so hard to prepare her (and us).  Nobody made us feel in the slightest like we were being forced out, or not given a choice, and everyone, especially Janey's fantastic teacher Amy and the amazing principal Ms. Lampron, made sure we realized that Janey is welcome back at any time at all.  In fact, because the Lee School has a half day on Fridays, and Friday is a huge day for Freddy at school (he is participating in a major speech contest and wants us there), Janey will go back to the Henderson for the whole day Friday!  That means a lot to everyone, I think.  It made yesterday not a goodbye day but just a "see you in a few days" day.  I am as always so grateful and amazed by the love and caring that nearly every person we've ever had dealings with in the Boston public schools has shown us.

And so we start a new chapter with Janey.  I am feeling more hopeful than I had thought I'd feel.  I think the next few years might be full of a lot of surprises from her.  It's going to be a huge change, and I am well aware of Janey's tendency to have a honeymoon period at the start of new things.  I am sure there will be tough days ahead, but today was far better than I had thought it would be, and I thank everyone that has helped us get to this point.

Sunday, April 27, 2014

What Is Worse, What Is Better

As of yesterday, Tony and I have been married 22 years.  Anniversaries always for us provoke some looking back and reflection, and as with every single aspect of both of our lives, Janey's autism played a big part in that thinking.

How has autism affected our marriage?  I'll start with the "for worse" part, because I want to be honest.  It's tough on a marriage to have a child with disabilities, and Janey's particular brand of autism has been a huge challenge.  To start with, we almost never get time alone together.  "Date night?"  Don't make me laugh.  There isn't exactly a long line of people asking to watch Janey.  It's too hard for almost everyone.  We are extremely lucky in having William and Freddy.  Yesterday, Freddy watched Janey so we could go out to dinner.  But that was a special gift to us.  We can't ask for them to do that often---it's a huge job.  Janey requires our attention at every moment she is awake and home---one of us is always, always assigned to watching her.  We don't have a lot of time to just be together.  She wakes basically every night, often.  I won't get detailed, but you can guess how that affects a marriage.  And there is the stress---the endless stress that makes it hard for us to be at our best with each other.

But there are "for better" parts too.  We need each other---desperately.  I don't think either of us would ever entertain even a thought of trying to go it alone with Janey.  We have to be a team.  In our particular case, I think autism has also sharpened our shared philosophies.  From the start, we felt that our kids would come first in our lives, and every day, I see Tony putting that philosophy to work with Janey.  I love seeing them cook together, run together, laugh together.  I love hearing his patience with her.  The moments she says something adorable or unexpected, the laughter and happiness we share is something beyond almost any joy I've felt in life.  We also appreciate our boys extremely much.  We realize what an amazing gift children are, and how astonishing every milestone, every graduation or college acceptance or job gotten or A report card is.  We don't take much for granted.

What is the biggest impact Janey has had on our marriage?  I think it's on our view of the future.  There is not an end to parenting Janey.  Not that there is an end to parenting any children, but with most kids, there wil come a day when the day to day parenting is over.  With Janey, that is not going to happen.  Our future includes her.  There is not going to be a relaxed retirement for us.  We are three, not two.  And that sharpens the present.  I think we are more prone to enjoy the little now moments.  When we all are enjoying a good mess of Chinese food, laughing and joking and eating, we live in that moment.  We don't sit and figure out how we are going to afford that retirement home in Florida.  We think about how we are going to enjoy that next cup of coffee.

I've noticed a lot of songs and writing about anniversaries deal with the question "Would you do it all again?"  If we could have looked into the future and seen today, would we have run from each other before ever marrying?  I don't think so.  I am not being blindly positive right now.  I am not saying my mind doesn't sometimes drift to imagining a different life.  But I know how lucky I am to have a happy marriage, to have a husband that I love, to be with a man that has the same core beliefs in life I do.  Janey, as well as our sons, have made our life what is is, and yes, I'd do it again.  With my eyes open, I would do it again.  Here's to 22 more years.

Tuesday, April 22, 2014

YouTube with ease

A few days ago, when trying to round up all three kids for dinner, I realized that all three of them were doing the exact same thing---browsing YouTube.  That was an amazing moment for me.  Usually, I think of Janey as a whole separate category of the family.  There's the boys, and there's Janey.  That might have been the case even if she hadn't been autistic.  She is a lot younger, and she is the only girl.  But her autism sets her apart even more.  The moments of her just being one of the gang are few.  And they are great.

Last night, I watched Janey on YouTube for a long time, and I was amazed.  She uses it with complete ease.  She doesn't type in things to search for, but other than that, she can pretty much do everything the boys do---skip ads, rewind parts of videos, pick a new video from the ones offered, use the back button, make videos smaller or larger, make them louder or softer---all as easier (or more) than anyone could do.  Her choice of viewing probably isn't typical for a nine year old---she loves The Doodlebops, Busy Beavers (a line of videos designed to teach English to non-English speaking kids), nursery rhyme videos, and my personal favorite, videos of people opening Kinder Eggs---but she watches them as intently and as addict-ly as her brothers do.

So why can she learn to use YouTube so easily and so well, when after 7 years at school, she has trouble naming letters, counting objects, speaking in full sentences, greeting familiar people?  I think the difference is motivation.  She is extremely motivated to use YouTube.  It's highly rewarding---interesting videos she can completely control, millions of them at the end of a mouse.  The rewards are immediate and pleasurable.  Letters?  Not so much.

The other answer is that she DOES know a lot of what school (and I) have worked to teach her, but she feels no need to let us know.  Many people working with Janey have suspected she can read.  I think she can, too---in fact, I KNOW she can read some words, because she can have two videos identical except for the title, and she knows which one is which.  But she has little motivation to read, or to SHOW us that she can read.  I think she might actually actively be hiding it.  Several times, when we were not looking, she somehow got to a video that I don't think was one of the choices along the side picked by YouTube.  I suspect, I really suspect, that she typed things into a search bar.  I have no proof of that, but I have my suspicions.

So, how do we make use of the YouTube watching skills?  That's the big question.  More and more, my inclination is to NOT actively try to make use of them.  She loves YouTube, I know she is learning from it, the videos she watches often are instructional type videos I couldn't FORCE her to watch if she didn't want to---maybe I just need to leave well enough alone.  The past seems to support this idea.  She hasn't learned the things we all have actively been trying to teach her, but she has learned with complete ease the things she wants to learn.  So maybe time actively trying to teach her things is better spent giving her time to teach herself, and the tools to do so.

All of this being said, I will go back to the happiness of the moment of realizing that all three of my kids were enjoying the same thing at the same time.  It was a special moment for me---one that for that moment anyway erased the divide that has always made it Janey and then the boys, and made it instead my three kids, the YouTube addicts.

Saturday, April 19, 2014

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.

Wednesday, April 16, 2014

Mockingbird Monologues

We have a mockingbird living in our yard, and now and then, we are treated to his song.  If you've ever heard a mockingbird sing, you know how cool it is.  He sings for a long, long time, with little bits and pieces of all kinds of other bird songs and noises, and sometimes things like car alarms and squirrel and cat cries.  It's quite something to hear.

Last night, Janey barely slept, and she was in one of the the moods where she talked and sang non-stop.  All the talking was delayed echolalia from assorted videos, and the songs were like an iPod set on random---every genre, mood and rhythm of song coming up one after another.  Although I was collapsing from tiredness, for some reason I was struck by how very cool, like the mockingbird's song, Janey's monologues like that are.

Imagine a child who very rarely says much except the simplest phrases----"Snuggle on Mama's bed!  Ice cream, please, ice cream!  No, Mama!  Don't brush your hair!"  And then imagine that same girl using words far beyond any in her regular vocabulary to recite dialogue "Well, I don't call you a narrator!  I call you a big old secret teller, and I'm kicking you out of this story!"  or "What's the difference between a lie and a fib?  Well, a fib is just not quite telling the truth.  A lie, well, that's just a lie!  Why do you ask?"  "What's a top 10 countdown?  It's when you pick your ten favorite songs and count them down, starting at 10 and going to 10!"  Those quotes from Mickey's Magical Christmas, Angelina Ballerina and Elmo's Top 10 Countdown were ones Janey said in rapid succession last night, all with perfect diction and expression.

Then imagine a child who often screams for hours, who is not toilet trained, who is in many ways severely intellectually delayed, and imagine her singing these lyrics, perfectly in tune...

Oh, it's a jolly holiday with you, Bert
Gentlemen like you are few
Though you're just a diamond 
in the rough, Bert
Underneath your blood is blue!
You'd never think of pressing 
your advantage
Forbearance is the hallmark of your creed
A lady needn't fear when you are near
Your sweet gentility is crystal clear!

Forbearance?  Gentility?  How does it all work?  How is it possible that Janey can sing like that, and sing with expression and style, not at all robotically?  And then switch to "Pumped Up Kicks", then to "Rhinestone Cowboy", then to "Angels We Have Heard on High", to name just a few, all sung, to my ears anyway, perfectly?

Is Janey like the mockingbird?  Is there some little genetic piece of code we share with them, that is usually hidden, but in Janey, is expressed?  Does the mockingbird understand what it is singing and saying?  Does Janey?  I don't know.  Does it matter?  It does, I think.  Echolalia takes up so much of Janey's time that I want to understand it better.  Is it meaningful to her?  Why is it something she does so much of?  Should I discourage it, or embrace it?  Is it just an odd little quirk, a strange autism trick, or is it how Janey wants to talk?  I read the recent article that made the rounds about connecting through Disney, and I can understand that, but Janey's echolalia is different, her particular form of autism more isolating.  She doesn't enjoy sharing her echolalia.  She doesn't like to be joined in her singing or her reciting, not at all.

On some days, I just relax and enjoy the monologue.  On rare occasions, I just let myself be awed by Janey's mind, however different than the mainstream it might be.  Once in a while, I just love hearing her surprise me with her version of the mockingbird's song.

Friday, April 11, 2014

In Dreams

I rarely dream about Janey, or any of my kids, or even my husband.  For whatever reason, my dreams are stuck in high school or college, or in an alternative world where I don't have a family.  But last night, I had a dream about Janey, one of the very, very few dreams I've had where she was "normal".  The dream was also set in the right now, another rarity.  She was talking to me like any other 9 year old would, telling me about her day of school, asking for various toys, laughing and joking with Freddy.  I was watching her in amazement, debating if I should call a new IEP meeting to tell everyone that she was "cured", that she can stay at her current school.  But even in the world of dream logic, I had my doubts.  I thought "Well, this is today, but tomorrow, she could regress back to how she was.  Probably better to just leave things as they are, and see what happens."

I know why I had the dream, of course.  Janey had about a 2 week good mood stretch, where she was happy most of the time, talking a little more (but nothing like the dream), not crying or screaming much.  It seems to be ending---she screamed a lot last night.  And I got the IEP to sign yesterday.  I am going to read it over carefully, of course, but the handwriting is on the wall.  She is changing placements, to a "substantially separate classroom"  And I am probably 95% sure that is the right decision.  But still, every day when I drop her off at school, I feel like crying, and sometimes do.  I tell myself that part of that is just that I don't like changes.  But it's not just that.  I love her school.  I love the people, the layout, the philosophy. There is a small part of me that feels bitter, although that is a useless and probably misplaced emotion.  But I still feel it a bit, if I am honest with myself, thinking "It's an INCLUSION school!  Whey can't they find a way to include Janey?" I know that they tried, very, very hard.  I know that Janey deserves a chance to prove what she can do in a classroom aimed at helping children just like herself.  I know all that.  But in my dream, I guess I was looking for the loophole.

We live in reality.  Maybe that's why even in dreams, I don't often let myself alter the here and now.  It's too hard to wake up from.  But also, it's not useful.  Janey is who she is.  I love her as she is.  That other Janey, that Janey in the dream, is not my Janey.  That Janey is not hiding someplace inside my Janey.  She is a dream character, and like the other dreams I had last night (just how do I think of these things---having to take a walking detour through a mall on my way home in a car, and that was bad because I was hurrying home as I'd promised a friend's husband I'd act as a shrill for his maple syrup booth at a a fair), it is just the mind for its own reasons making stories up in the night.  I kind of wish my mind would just stick to reliving endlessly the dramas of high school and college that seemed so important then.

Tuesday, April 8, 2014

When there's no right answer

Recently, I've gotten addicted to an on-line card game called Hearthstone.  It involves strategy, you can get on at any time and play a 10 minute game, and it's something I can do to motivate myself when I need to get going with other work---"Okay, I can play one game, and then a load of laundry, one more game and a bunch of dishes..", that kind of thing.  It's the kind of at home treat I think every parent of a child with autism needs---just something to help get through the day that requires no preparation and can be indulged in any time there is a few minutes to spare.

Freddy enjoys a game of Hearthstone now and then too, and last night, he asked to play. Which was great, except for one thing.  It was during the first half hour after Janey got home from school.  That first half hour is crucial in determining how the rest of the night goes.  There are very specific rules for what I do during that time, specific and simple.  I am supposed to be on my bed.  Janey runs right in as soon as she is home to make sure I am there.  I take off her shoes and she lies down next to me, and we snuggle.  Then, depending on her mood, she gets up to do other things.  You would think that would mean I could get up too, but you would be wrong.  I need to stay right there.  Like other things in Janey's world, like the TV and Wii remotes, there is a correct place for me at certain times, and after school, that place in on the bed.  It is important to Janey that I be there.  She checks back often to make sure I am where I'm supposed to be, and doing what I am supposed to be doing, which is nothing---I can't read, listen to music, play with the iPad---I am supposed to just be there, in case she needs me.

When Freddy asked to play, I knew I was taking a risk.  Janey's been in a great mood lately, and I wanted it to stay that way.  However, as any parent of a teenager knows, it's not that common to get an invitation into their world.  I knew if I said no to playing with Fred, I wouldn't get another invite soon.  And it's extremely important to me to be there for my boys, too.  Teenagers, and I think boys in general, don't come out and tell you they need you around, they need to talk, they need you available, but that doesn't mean they don't.  They do.  So I decided to throw caution to the wind, get up and play some Hearthstone.

The results were quite predictable.  A few minutes into the game, Janey came over and grabbed my hand, and said "Snuggle on Mama's bed!"  I said "In a few minutes, Janey.  I am playing with Freddy right now"  If you think that worked, you don't know Janey.  She repeated herself, more loudly, and then tried hard to reach over and turn off the monitor.  I didn't let her, and she rapidly got more and more upset.  I could see I was about to lose her into her screaming and crying world.  But I also knew I was going to lose the round of the game to Freddy in just a few moves, something I don't usually do (yes, I'm fairly good at the game, not to boast or anything...)  I decided to hold out, to not quit, to keep playing.  And of course, Janey melted down, a meltdown that lasted until she went to sleep.

Now, what should I have done there?  That is where there is no right answer.  Should I have given in and quit the game, because Janey is younger than Freddy, is autistic, has greater needs?  And also, because I knew the immediate result of not quitting would be drastic?  Or was I right to stand my ground, to give Freddy some time and attention?  Over the years, I know my boys have been shortchanged because of Janey's needs.  Often, with teenagers, that's not a totally bad thing.  I think most teenagers like a little space.  But there's a limit.  Also, I was enjoying myself.  Janey was watching a video while also watching Tony make supper.  She didn't plan on staying on the bed with me.  She just wanted me there.

Unlike in Hearthstone, where making the right series of moves leads often to a win, and in which there is a clear win or lose at the end of a few minutes to show you if you've decided correctly, there is no clear answer so often when it comes to making choices about family life and autism.  I'm sure I've made the wrong choice very, very often, on much bigger issues than this one.  And I'm sure I'll continue to do so.  Autism doesn't play by rules.  It asks more of us than we can give.  We can't do everything right.  We can't be a perfect parent to all our children, all the time.  We have to just make our choices and hope for the best, and accept that it's a rigged game in many ways.  There isn't going to be any clear winner, but hopefully, we can play the best game we can along the way.

Wednesday, April 2, 2014

My own personal autism awareness wish list

Here it is, World Autism Awareness Day again.  I've been saying to myself what I say to myself every year on this date---I think I'm about as aware of autism as I can get.  However, I've been thinking about what I'd like others to know about autism.  Here's a list of the top four things I'd like the world in general to know.  It's my own personal list---I am sure that everyone with a life touched by autism has their own list, different in many ways, but I can only speak for myself.

Most autism you see portrayed in the media is high-functioning autism.

There is a huge, huge range of abilities and characteristics all lumped together as "autism".  In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome.  But the powers that be, for whatever reason, have now lumped that in with all the rest.  If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism.  On the other end, there are children and adults like Janey.  Janey is nine.  She is not toilet trained.  She cannot be left unsupervised for a minute.  She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos.  She screams, cries, injures herself and doesn't sleep regularly.  Academically, she functions about at a 2 year old level.  She is autism, as much as people with college degrees can be autism.

I am not looking for a cause of autism or a cure for autism.

There are many, many possible causes of autism.  Janey's autism could have been caused by any number of them.  In our daily life, it doesn't much matter what caused her to be autistic.  And in Janey's particular case, there is not going to be a cure.  I am not sure there ever is a cure for correctly diagnosed autism, but many disagree with me there, and that's fine.  However, I don't choose to pursue a cure for Janey.

Autism affects family life extremely severely.

If you've ever spent even an hour with a child with autism, especially low-functioning autism, you were probably exhausted after that hour.  Imagine that you have that child living in your house, every day, every night.  Imagine that you can never, ever count on a full night's sleep, that at any moment, your child might start screaming or crying or biting themselves or trying to bite you, and that there seems to be no reason for this behavior and no way to soothe them.  Imagine that you can never, ever count on going out in public as a family and having it go smoothly.  Imagine that even close friends who would do anything to help you have admitted they can't watch Janey, even for a few hours.  Imagine that you must sometimes make choices like whether to listen to a sibling tell you about their tough day or follow the rituals the autistic child demands, and if you pick the sibling, you know you'll be dealing with hours of screaming.  Imagine a life that autism touches every single second, every single aspect of.  That is family life with our particular brand of autism.

I love Janey more than I can possibly describe, and that guides all my decisions about her.

It is the most important thing in the world to me that Janey be loved, cared for and valued.  I make every decision about her life with that in mind.  For example, I am not sending her to summer school this year, because I am not comfortable with the program.  I need respite, but more than that, I need to know Janey is safe and loved, just as any parent has that need for their child.  In Janey's case, since she can't usefully tell me what happens when I'm not with her, I have to be ever-vigilant about who is caring for her when I am not there.  At this point, I can't compromise on this---I can't accept less when letting her out of my sight.  Maybe that is my biggest point.  There needs to be quality education, care and respite for children with autism, because they deserve it every bit as much as any child.  Without that, the burden on many families is near unbearable.

To all my friends, to all my readers, to everyone who has helped me through this life, and especially to Janey----Happy Autism Awareness Day!