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!

Friday, March 28, 2014

The Big IEP Meeting

I should write about today's IEP meeting while it's fresh in my mind, as it was an important meeting, one that will affect the course of Janey's life and ours for years to come.

There really weren't any big surprises at the meeting.  First we heard from everyone who works with Janey about how she is doing---the regular ed. teacher in her room, the special ed. teacher also in her room, the speech, OT, PT and music therapists, and the ABA instructor and her supervisor.  It's always amazing to me to see what a big and caring and wonderful team Janey has---all thoughtfully relating Janey's progress and non-progress.  Basically, she is making progress, and doing things that she couldn't do in the past---matching objects, sorting objects, taking turns at times, using PECS communication more and more and writing her name with ease (which she will never do at home!)  However, everyone agreed that her moods and her difficult behaviors very much impede her progress.  She often will do something one day, but then refuse to do it again.  On bad days, when she is biting herself and lashing out at others and screaming, it's very hard for her to learn at all.

So, at about the middle of the meeting, there was a big pause, as everyone in the room I think knew what was then going to be said---that Janey needs a new type of classroom.  She needs to be in what is called a substantially separate classroom, and because her current school is an inclusion school, she needs to move.  She will move to a school with a large autism program, a program that has existed for a long time---at least 18 years that I know of, which is an eternity in the world of autism.  It's the school I visited, and I was determined at that time not to want Janey to be in.  I've come around since then, and I do feel it's the right decision to move Janey.  We owe it to her to give her a shot at learning more, and being in an environment made for children with autism.  I was impressed with the ratio of children to adults there, with the kindness and patience of the teachers and therapists and aides, with the progress the kids appeared to be making.  I am hopeful Janey will do well at the school, and once the IEP is signed, we will start transitioning her there.

All that being said, there was a lot of crying at the meeting---not just mine.  The principal sat in on part of the meeting, and tears were in her eyes a lot of the time, as well as in almost everyone else's.  As the principal said, the Henderson School is Janey's home.  It has been for years and years.  She first set foot there when she was 2 weeks old (or earlier, if you count my pregnancy).  I have had a child there for 14 years now.  I love the school.  I truly, truly love it.  But what I love, and what I am comfortable with, is not what is most important.  Janey's needs are.

We will stay in touch with the Henderson.  Janey may still go to after-school there.  We will take her to the spring dance.  We will visit.  And some day, we will bring her back.  The Henderson now is going to be a K-12 school, and at some point, when Janey is ready, it will be her school again.  That is my hope, anyway, and the hope of the staff there.

So, for now, I am going to just try to enjoy these next weeks.  I'm trying hard to stay positive, because I know there is a lot to be positive about.  It's a positive thing to have a whole room full of people working to help Janey, to have a school full of people that love her, and a new school to go to that I do hope will love her too.  We are all hopeful that Janey will be able to progress well at her new school.  But, I do admit, the tears keep sneaking out here and there.  I guess any big change feels scary, and one involving a child like Janey, doubly so.  But we are not going through this alone---we are very lucky to have many others helping us, and I thank all of them for their past, current and future love of my precious girl.

Thursday, March 27, 2014

Angry At Autism

I want to warn people that I think this blog entry will be a little raw.  It's one of those entries I write more for myself than anyone else, just to vent my feelings.

I am feeling angry today, furious really.  Not angry at any person, or institution, or event.  I'm angry at autism.  I think it's fair to say I hate autism.

In response to the arguments I am making in my own head to that statement---saying I hate autism doesn't mean in any way I hate people with autism, hate Janey.  I love Janey more than I can imagine loving anyone on earth.  And it doesn't mean I don't realize that not everyone with autism has a form of it that would stir up hate.  I wish there were different names for different kinds of autism.  There is autism that makes people a little quirky and interesting, autism that is something a person can and often does feel proud to have.  But if they are able to feel that feeling, they don't have Janey's form of autism at all.

I hate autism for what it has done to my daughter.  It took a sweet little girl, a girl that in most ways was developing normally, a girl that more than one person said to me "Well, at least we know she doesn't have AUTISM!" as if the very thought of that outgoing, happy child having autism was something we could almost laugh about, and within a few months, stripped her of her happiness, her ability to communicate anything but the most basic thoughts, her ability to learn...autism came like a thief and somehow, before my eyes, robbed Janey of so very much.

I hate autism for tormenting my beautiful girl.  I hate it for making her bite herself until she has a permanent scar on her arm, for making her scratch herself so badly she sometimes bleeds, for making her scream a scream of what only can be described as agony, over and over and over, for making her cry sometimes for days for no reason she can tell us, for making her perform useless rituals increasingly frequently, for keeping her from sleeping, for doing things to her that if it were a person doing them, would be rightly called torture.

I hate autism for making learning so hard for Janey, for making it that any testing she has ever had shows her to be severely retarded, although I know, when I allow myself to think about it, that there is an amazing mind locked away somewhere in her brain.  I hate it for keeping her from reading, from doing math, from being able pursue her interests in any depth.  I hate it for taking someone with many gifts and talents and making them unable to use those gifts and talents.

I hate autism for taking away so many of childhood's joys from Janey.  I hate it for taking away any real enjoyment of Christmas, or birthdays, or Halloween.  I hate it for taking away slumber parties and playdates and ballet lessons and first dates.

I hate autism for the what it will do in the future.  I hate it for keeping Janey from ever getting a high school diploma, a college degree, a husband, a family, a first apartment on her own, a life apart from her parents.

I hate autism for making our home life so often a living hell.  Janey doesn't make it that way---autism does.  Autism keeps us from vacations, dinners out, visiting friends as a family.  Autism will take away any years Tony and I might have had of a leisurely retirement.  Autism will make me terrified of getting old, of not being on this earth to protect and care for my precious, precious girl.

Maybe I am not supposed to say I hate autism.  Maybe I am not supposed to be angry at it.  But substitute any other name for autism in this post, and imagine NOT hating it, NOT being angry at it.

I love Janey.  I hate autism because I love my daughter.  Janey's wonderful traits, and she has many, are not part of the autism.  They are what the autism has somehow spared.

Tomorrow we have our big, big IEP meeting.  I will write about that, and I will try to be less emotional than I am today.  But for now, I am allowing myself, until Janey gets home and I put aside any emotion to give her the best night I can, to give in to hatred.  Just for today.

Tuesday, March 25, 2014

All In An Hour

This morning, the hour spent from when we left the house for school until when I dropped Janey at her room demonstrated so many of the joys and challenges of life with her that I thought I'd write about it.

Janey left the house for school with enthusiasm, as she almost always does.  Transitions are not as hard for her as they are for a lot of kids with autism.  She has a lot of energy, a lot of eagerness to get moving---we often joke how much she is like her father, and unlike the boys and me.  She is restless.  So she generally bounds down the steps, ready for the day to start.

In the car, we always listen to music from my iPod.  Some days I ask her what she'd like to hear, and some days I just put it on random.  If she doesn't like the songs, she never hesitates to let me know what she'd like to hear instead.  Music prompts more communication in her than anything else.  Today, I went with random, and she approved of the songs that came up.  The first one was "Surfin' Safari" by the Beach Boys, and she liked it so much it almost was TOO much---she was frantically bouncing along and waving her arms and yelling in delight.  I was worried we were about to cross the line into the over-excited state that sometimes turns dark fast.  But luckily, the next song was a change of place, but one she liked too---"I'm Beginning to See the Light".  She likes great tunes with a big band sound, and that fit the bill.  We followed that with "I'm The Only Hell My Mama Ever Raised", by Johnny Paycheck, a favorite of mine that she liked fairly well, and a few songs later, we were at school.  It was a good ride, as the morning almost always is.  The car music time is probably my favorite time with Janey.  We are doing something we both enjoy, and it's a wonderful kind of shared happiness.

Once we had parked at the school, I started my patter---my talk to get Janey ready for the day.  The main emphasis today was that it wasn't an exercise day.  Three days a week, Janey goes to a program called BOKS before school, a music and exercise program, and she loves it.  Last week, on Friday when there was also no exercise, when she realized we were going in the "wrong" door, the door we go in for non-exercise days, she freaked out.  So I wanted to prepare her today.  I rambled about that, and my everyday spiel about how we don't cross the street until the walk sign comes on, and how we might have to wait for the bell to ring before class, and anything else I think will help her prepare for the day and keep her calm.

When we got in, we were early, so we did have to wait in the hall for the start of the day bell to ring.  The drive to school takes anywhere from 15 minutes, on a truly record dream traffic and lights day, to an hour, when conditions hit a perfect storm of wrong.  Today was a quicker ride, but it's impossible for me to time the drive so we always get there right at the same time, which Janey would prefer.  At first, she seemed okay in the hall, but after a minute or two, she screamed---that piercing, earth-shattering scream that she has perfected.  It always amazes me how little affected the other kids seem to be by her screaming.  I guess they are used to it.  It's more often adults that are around that look worried, and I don't blame them.  It's quite a scream.  After screaming, she started to sing the last song from the car, "Red River Valley"  This seems like a calming technique she uses, so I sang along.  I've long since lost any shyness I might have had about singing in public.  After a bit, a girl from Janey's class came around, one of the very sweet girls who are so good to her, and that brought on a smile.  The principal also stopped by Janey, and played a clapping game with her, and let Janey admire her shoes.  I had a wistful feeling, although I'm trying not to think much about, but I gave in and thought how much I will miss the school if and when we move Janey.

Then the bell rang, and we were off to class.  Janey held hands with her friend, and the friend sang a made-up song to Janey---"Janey is smiling, Janey is smiling, I like it when Janey is smiling!"  It's amazing how kids instinctively get what works with Janey---singing and movement.  Janey was so happy with her friend that I stood outside the door of her room and didn't even peek in as they walked in together.  I felt feeling happy, overall, but also thinking a lot about that big scream, and wishing that Janey had an easier time learning in an inclusion environment.  Overall, though, it was a good morning, and a fairly typical morning lately.  Some parts of raising Janey are getting easier, gradually.  We are figuring her out, and she is figuring us out.  There are more hours that are overall good than tough, and that is hopeful.