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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.

Friday, March 21, 2014

Reading to Janey

I didn't have a lot of preconceived dreams about what being a mother would be like before having kids, but I had one very strong one!  I dreamt of reading to my kids.  I had all kinds of fantasies about how we'd pick out a huge pile of library books and read them all, and go back the next day and get more, and how I'd have to negotiate about how many bedtime stories I'd read, all the while being secretly thrilled they wanted more than there was time to read.  Well---like most parenting fantasies, this one never came to pass.  I read a fair amount to the boys, but it was never as big a part of their lives as I'd wished, and neither of them read much for pleasure.  And Janey---reading to Janey---well, it's different than what I pictured.  But I'm starting to realize it still can be a great way for us to connect.

The first thing that has to happen with Janey and reading is that she has to love the book.  It's very hard to figure out what books she is going to love.  Her choices seem pretty random to me---a Wo Wo Wubsey book about tails?  A book about a dog encountering different sounds?  A random clothes catalog?  I can pick out a book I'm sure is going to be something she'd like, and she firmly closes it the minute I open it.  I have to go with what she likes, for whatever reason.  Right now, the book she's picked is a book of nursery rhymes, with very simple versions of the rhymes and with embossed pages.  (here is is, if you are interested)

Once we have the book, there's the reading.  But it's never a straightforward, read from beginning to end, read all the words reading.  Instead, after I read a few words, Janey grabs the book and closes it.  Then, if she really likes the book, she re-opens it, finds the part she likes and hands it back to me, saying something like "Humpty Dumpty!" which means I am to re-read that part.  I do, and often she points to it again.  I read it again.  This can go on for 10 or 15 rounds.  After a while, before I go insane, I quickly sneak in another rhyme.  That usually causes the book to get grabbed and shut.  But then, sometimes, when she reopens it, it's to request the rhyme I snuck in.  It has to be her idea.  And so we go on, sometimes for a long time.  We might only read 4 or 5 of the rhymes total, but we read the heck out of the ones she likes, and she is delighted.  She loves hearing them, and doesn't get bored.

I used to get very frustrated by this type of reading.  I felt like all we were doing was sort of a form of echolalia via my reading---I was doing the echolalia for Janey.  But I've tried to get a new attitude about reading.  The point, with Janey, isn't really to read a book.  It's to interact, and when we do our reading routine, we are interacting.  Janey is communicating what she wants to hear, I am spending time with her doing something we both enjoy, she is very possibly connecting the words I often put my finger under as I read with the sounds---she might be learning to read.  And she is happy.  She is getting joy out of a book, and isn't that the point?  I have had to adjust my thinking about books quite a bit.  Books can be like toys, and in fact Janey is much more likely to interact with a book than with a traditional toy.  Wasn't that my dream, in a way?

My mental list of dreams for Janey is not long.  I hope she is happy in life, and safe, and loved.  But I will admit in that list is a strong hope she will learn to read well enough to read on her own, to enjoy reading.  She can read a little---we have seen that despite what I think is her desire for us to not know she can.  But if I ever see her sit down with a book and read it to herself, well, that will be a top ten lifetime moment for sure.

Friday, March 14, 2014

Analyzing My Sadness

As I wrote about recently, we have pretty much come to the decision that Janey needs to change schools to attend a specialized autism program.  It's a hugely tough decision, for us and for her current school, and everyone is working on making sure we are doing the right thing and doing it in the right way.  Everyone is working to do the best for Janey, and yet, still, I am very sad.

I am sad because I love her school.  I love the people there.  It's become a home away from home for me, for the past 14 years.  When I drop off Janey, I talk a little with people I've known for many years.  I care about them, and truly love some of them.  It's a wonderful school.  But---I know that isn't what is the most important.  The most important thing is that Janey be in a place that can best help her be happy and live up to her potential.

This morning, the sadness hit me very hard.  It was "Dress Up in Green" day at her school.  Although they can't come out and say it, it's for Saint Patrick's  Day.  There are many, many Irish families at Janey's school---probably close to half the families, so it's a big day there.  I dressed Janey up for it, and thought about how much I enjoy things like that---special dress-up days, field days, the excitement of a school just before Christmas, the days that are a little out of the ordinary.  And then I thought about how in an autism school, those days will probably not happen.  Kids with autism often don't like changes of routine.  They like predictable days, not special days.  And I thought about how Janey didn't care a bit about dressing in green.  She doesn't know what St. Patrick's Day is.  My sadness was just for myself.

However, when we got to the school, there was a special surprise.  A bagpipe player was playing for the kids as they entered the school.  Janey walked straight over to him and started lightly touching the bagpipe.  The sweet player showed her parts of it, and talked to her so kindly.  Then he played another song, and the smile on her face was one of her incredible, overwhelmingly wonderful smiles.  She held my hand and started to dance.  As we walked down to her room, she was as happy as I've ever seen her.  And I thought---it is not totally just me that I am sad for.  I'm sad that she won't experience the everyday surprises that a "regular" classroom holds.  She won't be around other children that are living a more typical childhood.  She will be with people that care for her, I know, but there is something given up, too, something hard to define but something important.

This sadness---it doesn't mean we are making the wrong decision, I don't think.  But it's very real.  I have often thought how one of the biggest joys of being a parent is reliving the parts of your own childhood that were special.  When we think back on childhood's special moments, we don't normally think "It was so special that my days were predictable.  I have such special memories of regular school days"  We think about the time we got a huge bag of candy for Halloween, the classroom parties, the field days and the shows and the bus rides to meets and the snow days and the graduations.  At least I do.  I want Janey's life to have those moments.  I want her to be surprised by bagpipers.  That is what is making me sad.

Tuesday, March 11, 2014

Janey's Mysterious Mind and Memory

I wish more than almost anything I could go inside Janey's mind.  I wish I could do a mind meld, like Mr. Spock, and just for a little while, see what her thoughts are like.  It would help so much in making decisions about her.  I try hard to believe in one of the latest catch phrases "assuming competence"---I try hard to assume that Janey understands everything and has a huge amount of untapped potential.  But there are days when it's hard to keep up that belief.  It's hard to understand why, if she does have this potential, her talking doesn't progress, her learning remains for most areas very, very slow, her toilet training seems to have permanently stalled.  And of course highest on my mind lately---why a school full of people doing their absolute best for Janey for seven years have not been able to teach her enough for it to seem like the right thing to keep her there.

A few things happened this past weekend that made me realize how mysterious Janey's mind is.  One involved a popular toy---a Pillow Pets Dream Lites stuffed toy.  About two years ago, we saw an ad on TV for these pillow animals that light up and put stars of light onto the ceiling.  Janey, in a hugely rare moment for her, said "I want that"  I really have no idea why I didn't get her one.  I guess it seemed like a very expensive and somewhat silly toy, but I can count on one hand and have fingers left over how many times Janey has actually asked for a toy.  I should have eagerly grabbed the phone to order one.  Maybe we were feeling extra pinched for money, or something---I don't remember.  However, this past weekend, I saw a Dream Lite dog at my favorite thrift store, still in great condition, lighting all up.  I asked Janey if she wanted it.  She was half asleep and not in a talking mood, but she gave a half nod, so I tossed it in the cart.  When we got in the car, Janey suddenly said something I didn't understand at first, but recognized as an unusual original sentence.  I asked her to repeat it, and she actually did---"I want my toy!".  Wow.  Tony went through the bags and found the pillow dog right away.  Janey spent the car ride home pushing the button to turn on and off the lights.  Since then, she has kept the toy close.  She isn't fanatically in love with it, but it's obvious she has more interest in it than almost any other toy she has.  And I keep thinking---she really did see something she wanted, years ago, asked for it, saw it again and remembered it, and made the effort again to make sure she had it with her.  There are times that would seem out of her reach.  It's re-taught me something I keep having to learn.  If a child that almost never asks for any toy asks for one all of a sudden, just get it!

Janey was overall in a grumpy, sleepy mood last weekend.  I hadn't seen her smile in days.  And then her brother William came home for a surprise afternoon visit from college, and Janey was obviously thrilled.  She smiled nonstop for the rest of the day.  It's not like she rushed over to him and hugged him---she doesn't provide the kind of reactions that are that easy to read.  But in her own way, seeing him meant a huge amount to her.  I wonder if she often dwells on where exactly he is.  She's seen his room at college, we've talked to her about where he is a lot, but I think still she doesn't get it.  He suddenly went from being here to not being here, and seeing him again must be a huge relief to her.  It teaches me another of those lessons I need to be reminded of over and over---we have no idea what is really worrying her or upsetting her.

Janey's mind doesn't yield easily to analysis.  The clues to her thoughts, her worries, her wants and needs---they are subtle.  But when I work on understanding her, I do think it's true that there is so much more there than it would seem at first glance.  It's going to be my life's task to try to understand her.

Thursday, March 6, 2014

When inclusion is no longer working

This is probably the hardest post I've ever had to write on here.  I've been thinking about what to say for weeks, and I still don't have the right words.  I've been putting off writing about this, as nothing is yet carved in stone.  But I feel like I have to write, to share with those who have kept me going all these years.

In short, we are looking at Janey leaving the inclusion school she's been part of since she was three, and in fact really before that---as her brothers went there for years before she did.  This is the 13th year I've had a child in her school, and it might be the last.

It took me a long time to accept what others were working on telling me gently---that Janey is not really any longer benefiting much from being in an inclusion classroom.  There are many reasons for this, but the one that hit home, the other day, is that due to her behaviors, she really already isn't being included.  It's not possible.  Janey, more and more, spends the day at school screaming, biting herself, scratching herself, and, more recently----lashing out at others, pulling hair with no notice, even once in a while biting others.  It's not safe for kids to sit next to her, to work with her, although to the eternal credit of the kids, they still want to.  That is the beauty of inclusion---that the kids in her class accept her.  That is what I love.  But in the long run, what is important is what is best for Janey.  Janey can't learn in her current state, not really.  She can't make progress any more in a room that is not modeled for children like  her, children with severe special needs.

The next step is to figure out where Janey should be.  I wrote a few weeks ago about visiting an autism-only classroom, which is where Janey would probably be placed.  There are several groups of these autism strands in the city.  They would provide Janey with a classroom designed especially for children with autism, with schedules with a minimum of surprises, with many, many professionals around that are experts in dealing with autism.  In many ways, it's possible Janey will be able to learn more under those conditions than she does now.  If the autism-only classrooms don't work for Janey, then we will look at other placements.

There are no villains here, no bad guys.  The staff at Janey's school, especially the special-ed classroom teacher this year, love Janey like their own.  I am sure if she does move, I will be far from the only one crying.  But we all have to live in reality.

So why do I feel so sad?  Why have I cried myself to sleep for the last few nights?  Well, because in many ways, this is making me admit something you would have thought I'd have admitted to myself a long time ago.  Janey is more complicated, more involved, than even most kids with autism.  There are many autistic kids at Janey's inclusion school, doing well there.  But Janey's combination of low functioning autism, intellectual disability and behavioral challenges are very hard to find the right way to deal with.  I've been trying, trying with all my heart and soul, for many years now, and there are days I feel I haven't made any progress at all.  Her school has done the same.  And still, Janey screams, she cries, she scratches, she bites, she learns very slowly.  It is not easy to admit to myself that even in at a school where everyone loves and cares for and is trying their best for Janey, she is not able to progress.

But there's the great days.  There's the days I watched Janey running outside with the other kids, keeping up with them, indistinguishable from them.  There are the thousands of times I saw teachers, staff and other kids excited to see Janey, thrilled just to see her smile or laugh.  There's the heartbreakingly beautiful moments she suddenly sings a song, in perfect tune, with all the lyrics, a gift from somewhere deep within her.  There is the love I've felt and I know Janey has felt from a remarkable school community.

I still hold out hope for some kind of miracle, for some sudden, amazing improvement which will allow Janey to stay where she is.  But that is looking less likely. Our IEP meeting is at the end of the month, and that is when we will have to make some decisions.  I will do everything I can to make sure wherever Janey ends up, it's a place where she is cared for and cherished and able to grow.  But I wish, I wish more than anything, that inclusion was working for her.

Tuesday, March 4, 2014

The days it all catches up to me

Once in a while, I have a day like today.  Today, I just couldn't get anything done while Janey was at school.  I napped.  I watched a little TV.  I sat mindlessly at the computer.  I made myself do the things I had to do.  I got Janey ready for school and took her there.  I mailed some packages.  I folded some laundry.  But beyond that, I felt like I was dragging around a huge weight.

I imagine this is depression, in a way.  Janey is having a medium-tough time lately.  She's been doing some things like scratching herself and biting the place on her arm she likes to bite, and she's been doing a lot of screaming.  She has been sleeping somewhat irregularly---not as bad as it's been, but not good.  She is not talking much, and when she does, she's running the words together, so it's hard to understand her.  She has not gotten over Kipper being taken off Netflix, although we found it on Amazon, but she can't quite access that on her own.  I haven't seen a lot of smiling lately.  I haven't seen my happy Janey in a bit.  And it all wears me down.

I tell myself, and I know in my heart, that most any mother would have days like this when dealing with a child with serious disabilities.  But when the weight comes over me, I don't think completely straight.  I don't tell myself to just let it all go for a day, to give myself a day to just feel it.  I feel angry at myself that I can't get things done.  I feel like a failure for my lack of energy.

I say this all not to just be a downer, but to talk to others out there that I know, from the years I've been writing here, feel the same way at times.  I am going to try to give myself permission to sometimes feel overwhelmed.  I'm going to try hard to accept that some days are going to be given over to feeling what I honestly feel---overwhelmed, discouraged, scared, tired.  The internet isn't always a welcoming place to such feelings.  So many blogs, advice pages, news articles---they are full of solutions, of ideas, of forward motion, of encouragement.  And that is great.  There are days I need that.  But some days, I think I need to accept that being Janey's mother is a very tough gig.  And if you are reading this and you are also struggling with negative feelings---let's make a pact to just let ourselves feel them, once in a while.

Sunday, March 2, 2014

OCD and LFA....combine for frustration...

Lately, it's becoming more and more obvious to Tony and me, and probably to almost anyone who spends any time with Janey, that she has Obsessive-Compulsive Disorder, OCD.  I don't normally like to play psychiatrist and do freelance diagnosing, but I have more than a passing familiarity with OCD, and it's getting pretty hard to miss.  Combining it with Janey's low-functioning autism and her intellectual disablity---well, let's just say things have been a little tough lately.

How does the OCD show itself with Janey?  Her particular brand of OCD seems to be the arranging brand. Here's a good explanation of that... link.  Janey needs to have certain things in certain places.  The biggest example of this is the remotes.  To watch TV, we use a TV remote and a Wii remote.  The Wii remote accesses Netflix and Amazon Instant.  Janey needs the Wii remote to be on the lower left corner of one table near the TV, and the TV remote to be on the lower left of the other table near it.  She will adjust them many, many times an hour, to make sure they are just right.  Another example is people's legs.  She cannot stand crossed legs.  If anyone in the room has crossed legs, she will go over and physically uncross them.  If they re-cross them, she'll uncross them again.

The odd part of these needs is that openly, she doesn't get upset over things being out of place.  She just "fixes" them.  This from a girl that can scream for an hour over not getting cheese cut as quickly as she wants...  But the OCD needs seem different, somehow.  She seems to just feel they have to be fixed, with a minimum of fuss and with infinite patience for our lack of understanding.  It's like it's her job---arranging things in a world that is constantly un-arranging them.

The most annoying need Janey has OCD-wise is lights.  They need to be turned off or on, in a system that is hard for us to figure out.  As best as we can figure, usually they need to be on in the daytime and off in the evening, but back on in the middle of the night.  This is pretty much the opposite of what we want.  I can't tell you how many times I've been trying to read something in the evening when Janey starts her light patrol and turns off the light.  I turn it back on, and within minutes, even if she's not in the room when I turn it on, she's back to check, and off it goes.  If she wakes in the night and the lights are off, she gets up and turns them all on, often waking us all up in the process.  She does this quietly and efficiently---no fuss, no screaming.  Just determination.

Touching certain objects is part of Janey's OCD also.  If you follow her around the house on her light patrol, you see that she needs to touch the same places each time.  Most especially, she is very focused on touching the side of a certain bookcase.  I am sure she touches this area hundreds of times a day.

A big part of OCD is the feeling that something will go very wrong if the rituals are not followed.  There is no way for Janey to explain to us what she feels will go wrong, and I don't even know if she can consciously form a definite worry, or if she just feels the compelling need for things to be put right.  But I suspect that very often, when she gets upset out of no-where, it's because she is somehow not able to perform a ritual or put right a wrong she feels needs to be righted.

It seems particularly cruel to me that fate has dealt Janey OCD---a disorder that my family seems to have a gene for.  It's hit us over and over (including myself).  But in Janey's case, more than even usually, the urges must be confusing and overwhelming.  I think she's dealing with them as well as she could be expected to do, but it breaks my heart that she has to deal with it at all.