We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

A Time Anomaly

Lately, Freddy has gotten very into Star Trek, and we have been watching a lot of episodes of the various shows.  That made it particularly striking when one of my favorite blogs, On the Train With Sophie, mentioned a Star Trek Voyager episode in a blog entry---an entry that made me think and think.  Read it here, if you wish!  The entry is about how in many ways, Sophie stands still in time, while her siblings seem to be in a different time flow--moving on and growing up fast.

In many ways, Janey stands still in time too.  I thought of that this morning.  We can never count on a full night's sleep, and are happy when we get it.  She wakes up wet, and needs a change.  She runs around the house as if she is excited she can finally run.  She comes to us and asks, in a phrase that could easily be that of a two year old "Strawberry milk?"  We tell her "I love you!" and she echoes it back "I love you!" and we are thrilled.  Nothing she does would be unusual in a toddler.  Only her 9 year old body shows that she is no longer two.

We think in this society in terms of progress, moving forward, striving always for the next level.  At school, success is measured in progress, in a line moving up a graph.  When we talk about our kids to others, it's almost always progress we discuss---they are walking!  They started kindergarten!  They are in high school!  They have gotten into college!  It's how we see a life going---it's how we feel we are on the right track.  So how do we deal with a child that doesn't progress in the typical way?

Of course, as I wrote in my last entry, there is progress with Janey.  But in a way, it's lateral progress.  She is refining being at the stage she is in.  She is coming to feel at ease with the level she is at.  And if we let ourselves change our thinking, what is wrong with that?  What is wrong with being developmentally a toddler, and getting better and better and better at it?  She knows how to be at the stage she's in.  She knows how to delight us, as toddlers do, with her sweet talk.  She knows what videos she likes, what textures feel good to touch, what foods she likes and what she doesn't.  She knows what books she likes having read to her.  She knows how to ask us for the basics in her life.

What if we put aside our traditional views of time and development?  What if we accepted that Janey might not move forward?  Please note I am NOT saying that I am going to do this.  I am just entertaining the thought.  In reality, I am still in our current time flow.  I want Janey to progress, because, quite frankly, time also is moving along for Tony and me.  We are getting older.  We will some day come to an elderly stage, and some day, we will be gone.  That is why, I think at heart, parents want their children to progress.  We want to know that when we are no longer around to care for them, they will be able to care for themselves.  Beyond that, I know Janey would be happier in a lot of ways if she was able to progress.  I think she'd love to be able to read.  I think she'd enjoy being able to have a real conversation.  I think she would relish the ability to do more for herself.  But what if we accepted that none of that might happen?  What if we concentrated on enhancing the stage she is in right now?  What if Janey is in a time anomaly?  It happens in the Star Trek world all the time.  They run up against all kinds of time oddities.  I am not literally saying I think that is the case here, but like Star Trek showed us a optimistic view of the future, maybe we can learn from it to accept that time isn't the same for all of us.

Little Triumphs of Christmas

Christmas has come and gone, and overall, it was a good one.  I was very tense about Christmas this year, as I guess in some ways I always am, but it seemed like more this year.  However, I used a "fake it until you make it" method (a phrase a friend told me that I very much like) and kept plugging away at Christmas stuff, and when the day came, it all seemed to work.

As you can see from the pictures, Janey actually opened two presents, and looked at what was in them.  That was huge for me.  She wasn't that excited, but she did seem to get the process, and was pleased with her nail polish and her plush Sesame Street count---the presents shown here.

You can see she wasn't too into her stocking, but she did take a few things out of it and looked at them briefly!

I think the best part of Christmas with Janey this year was Christmas Eve.  As we almost always do, we went to the house of a family friend.  The picture above is our traditional picture of our kids and the friends' daughter, in front of the tree.  This year, it was going to be a little bit bigger crowd than usual, and we weren't sure how Janey would do.  She did quite well!  She did something she sometimes does when there's a lot of people---she surveyed the crowd and found someone she liked the looks of, and sat on their lap.  In this case, it was the girlfriend of our friends' son, and the girlfriend's mother, people she had never met before.  They were wonderful with her and pleased she picked them, I think!  She did well with the two year old boy that was there, the grandson of the friends, which I had been nervous about---Janey can sometimes be aggressive with younger and smaller children, but she mostly ignored him, although at one point, while we all held our breath, she briefly put her arm around him.  There was one screaming incident there, when Tony had taken her out of the room to calm her down.  Tony and I both realized that how he and I handled that screaming made a different.  We stayed calm and acted like it wasn't a big deal.  I said something like "This screaming isn't uncommon.  It's fairly normal for Janey" and I carried on as if it wasn't happening, and that seemed to relax everyone about it.  We've realized, over time, that how we as parents react to things Janey does sets the tone.

The Christmas Eve night and Christmas day made me realize that Janey is making progress.  It's slow, but it's there.  In little, small ways, she is becoming more mature, and we are becoming better at being her parents.  Some days it doesn't feel that way at all, and if you were watching us from outside, you might not see it.  But we are learning all the time, and so is she.  As we look to the New Year, we feel hope---hope mixed of course with fear, with some sadness, with challenges and with acceptance of the life we have been given, but with hope nonetheless.

The invisible middle of the night mother's club

Janey is awake.  It is nearing three in the morning.  She has been crying, demanding, screaming---for hours.  I am beyond tired, at that place that is someplace past tired.  I see nothing in the future but a string of days and nights like this---held hostage by the needs of a little girl I love more than anything, but that I can't fix, that I can't make happy, that confounds so many people who try to help her, that is beyond the bounds of any advice or help or cheery talk that exists out there.

I am feeling despair, and I then I picture a club.  Around the world, although I can't see them, I know there is a club of mothers like myself.  Fathers too, but I am thinking of the mothers right now.  Mothers awake, trying to do everything they can to make a troubled child happy.  Mothers that have given up on lofty goals of self-fulfillment, that no longer believe the glossy claims of the parenting magazines.  Mothers that are just trying to make it through the night.

I know these mothers are out there.  We have talked, virtually.  I picture us all together some sleepless night---our children in the middle of a big room, doing their own separate things---screaming, crying, chanting in echolalia, laughing loudly, jumping and singing.  We mothers sit around the outside, drinking the coffee that sustains us, smiling at each other's children instead of staring as the non-members do.

Nobody in their right mind would want to join our club.  But once you are in, you are in.  You are in for life.  You are part of a pretty exclusive crew, a sorority with brutal initiation rites.  We have each other.  I am seeing you tonight, maybe as part of a sleep-deprived vision, but I am seeing you, all around the world, living my same life, keeping me going.  Here's to all of us.  Let's drink a cup of kindness yet, and hope for the morning to arrive.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

The importance of consistency

Lately, a lot of things at both school and home are coming together to pound a lesson into my head---BE CONSISTENT!  Of course, I know intellectually that is very important for all kids, and especially for kids with autism, but sometimes, it's easy to let it slide, and the universe seems to be wanting me to remember not to do that.  Last night, for example...

Part of last night was not in any way my doing.  It was the doing of the electric company.  For some reason, our particular stretch of the street we live on seems hugely prone to outages.  I think it's where a lot of lines branch out of, or something like that, because we lose power far more often than anyone I know.  Over the summer, it got insane---days and days and day on end we'd be without power for much of the day and night.  Then the electric company would robo-call us and tell us they were going to turn off our power for a specific length of time to make repairs, repairs you would always hope would fix the problem for good, but never did.  Then we had a few months of respite, but that seems over.  Night before last, the power was out most of the night, on a cold night (but not stormy---this isn't weather related!) and last night around 5 pm, it went off again.  So when Janey got home, there was no power.

No power right away sent Janey into a very dark place, literally.  She couldn't do her switching on and off of lights, she couldn't watch her videos, she couldn't listen to her music, she couldn't get her dinner quickly---not good.  But she held it together at first.  Tony went out to get us an emergency pizza dinner, and Freddy and I sang with Janey.  When Tony got home with the pizza, the power suddenly came back on.  So we tried to do our regular take-out routine---watching a DVD while we ate.  It's the one time we don't give into Janey and let her watch what she wants.  But Janey's chain of routine had already been broken.  She didn't get to watch Daddy make dinner right when she got home, she didn't get to do the lights, she didn't get to switch around Netflix show.  We didn't even get pizza from the normal place, and she didn't want to eat it.  She wanted to watch Kipper.  We stood our group in a misguided attempt to follow our OWN brand of consistency.  That might have its place, but Janey's needs were more than ours right then.

Before the end of dinner, Janey started screaming.  I've described her screams before, but yet again I want to emphasize how extreme they are, and they were at almost their most extreme last night.  She goes rigid, red in the place, and doesn't hold back one ounce of lung power.  She screams so loudly it makes your ears ring.  It's absolutely incredibly loud and horrible to see.

And here's where I made probably my biggest mistake of the night.  We have worked out a routine that works fairly well for screaming.  I take Janey into the bathroom.  I lock the latch hook up high, so she can see it.  I stay in there with her.  I don't tell her to stop screaming.  I just say, calmly, that we are going to stay in the "screaming room" until she stops screaming.  I am available to hug her or talk to her or whatever she needs, but I don't open that door until she stops screaming.  Then I say "we can leave if you are ready to not scream any more.  Are you all done screaming?" I wait for her to say "All done screaming!" and then we leave.  If she screams again, we go back, but lately, once is all it takes.

But last night, I belatedly realized how hard the night had been on her, and then decided, foolishly, that because everything had been so tough, I would just try to calm her down by hugging her and talking to her.  It didn't work.  It didn't work for about 10 long, long minutes, the kind of minutes where time extends and it feels like 10 years.  Finally, I wised up.  I led her into the screaming room and did the routine.  Within about a minute, she calmed down and asked me to "open the door!" When asked, she said "All done screaming" and she was.  And I then carefully let the night follow her routines.  She watched a little Kipper, switched the lights a lot, and went to sleep.

My point here is that not following a consistent routine can feel, to the parent or caregiver, like being nice.  I didn't want to do the screaming room because I knew Janey had had a tough night.  I wanted to comfort her, to make an exception.  But that wasn't what Janey needed.  She needed the predictability of a routine that she understood.  She needed to know that things were not all changed, that our actions were predictable.  I can't be inside her head, but I think it's a confusing place.  I think she very much needs things to hold onto---come home, watch Daddy cook, watch a video, flip the lights, hear her dog book, and yes, go in the screaming room if she is screaming.  She needs school to follow routines like that, to have predictable responses and teaching methods and routines.  She needs as much consistency as we can give her.  Sometimes, it's beyond our power, like the lights being out.  But when it isn't, we need to be there to provide a predictable, routine-oriented scaffold so she can grow.

Puzzlers

Janey likes to keep us guessing.  She's good for our brains that way, like they say if you do a lot of crossword puzzles it can stave off brain cell loss.  Here's a few of the unfathomable Janey questions...

1.  Why do legs always have to be straight?  Janey can't stand anyone's legs to be crossed, or tucked under them, or bent at all, really.  She won't freak out over this usualy---she'll just let you know, by trying to straighten them over and over and over and over, until it's just not worth it and you put your legs the way she wants them.

2.  Why do lights sometimes all have to be on and sometimes off?  When Janey wakes in the night, she needs to change the state of the lights.  If they are off (as I prefer), they all need to be turned on.  If they are on, often they need to be turned off.  One odd time she was asleep and we were up watching a movie.  She woke just for a minute, went over to the living room light and switched it off and then on, and then went straight back to bed and sleep.

3.  Why do tops sometimes need to be taken off and then put back on?  This morning was an example of that.  Janey took off her pajama top at least 10 times, and then came over to me screaming because she wanted it back on.  I did it without comment the first 9 times, but then tried to talk to her about it a little.  Not a good choice---her scream let me know this wasn't open for discussion.

4.  Why does Janey ask for certain TV shows and then freak out when you put them on?  This is a constant issue.  Janey will ask for, say, "Kipper's Playtime".  You put it on Netflix, and at the first bit of it, Janey will get hysterical, grab the Netflix remote and madly change the show, as if you were trying to force her to watch something horrible.  The same happens with books.  Janey will bring me a book to read, I start to read it, and all hell breaks loose.

5.  Why does Janey ask to have her nails cut---a grooming activity most kids don't like---constantly?

6.  Why do all pillows have to be on the floor?  I have been on a sewing machine frenzy, making throw type pillows.  Janey likes these, but she likes then to be on the floor.  No matter how often we put them back on the couch or bed, next time we look, they are all on the floor.

7.  Why does Janey twist up her fingers?  She so often puts them in the oddest positions, like pretzels.  It looks very uncomfortable to me.

8.  Why does Janey almost always ignore the cats?  It's like they are invisible.

I could probably go on for hours---there are so many little habits or behaviors of Janey I truly don't understand.  I am sure there are reasons, and I have some theories, but overall, they are a mystery.  It's one of the reasons I most wish I could communicate better with Janey.  I'd love to know the whys.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

The Return of the Screaming

Recently, we had the longest stretch of Janey being in a good mood ever.  It lasted about six weeks, and it was wonderful.  During that time, she had basically no bad days.  Almost every day was a happy day, a cheerful day.  She cried and yelled and bit herself very, very little.  It was one of the most hopeful times I've had since she was three and regressed.

I knew, reasonably, it wouldn't last forever.  For any of us, good moods don't last forever, and with Janey's history of cyclical mood swings, it's even more true for her.  So even when things were fantastic, I braced myself for them to stop being so.  Maybe I shouldn't do that.  I try hard to live in the moment, but for an overthinker such as myself, that is terribly hard.  I do enjoy the good times, very very much, but I think I find it important not to get unrealistic.  And so this current spell is not hitting me as hard as it otherwise would.

For the screaming is back.  It snuck back this past weekend, and has been in full force this week.  Not all day long---unlike the crying, this kind of screaming would be near impossible to keep up all day, but parts of each day have featured it.  It's the screaming that can't really be described, but I'll try.  It's the scream of someone in horrible pain, someone in such torment that they are not holding anything back.  Janey gets stiff all over, her face gets red and even sort of purple, she shakes, and she looks like her world is ending.  And she screams---so loudly it truly can make your ears ring.  She screams for periods of up to maybe half an hour, with barely a breathe in between.  And then---something makes it stop, and often, she is just fine afterward, cheerful and ready to go on with the day.

We search for reasons, of course.  The first thought is always pain---is she in some kind of awful pain?  She gets constipated, and at first, we thought that might be part of this spell, but she is no longer at all constipated and that didn't seem to help.  She doesn't have a fever, she doesn't show signs of sickness.  When we ask her to point to what hurts, she doesn't.  I wonder if it's a headache, but the fact that she ends the screaming after a bit and is just fine makes that seem unlikely.  So I think it's not really a pain thing, not physical pain, anyway.

Another theory I have is her lack of understanding of toilet training.  Earlier this week, she was holding in her urine.  I had put her back in underwear for school, after going to back to pullups for a while during another urine holding spell, but right away she started holding in urine again---going up to 14 hours without letting it out, and coming home, asking for a pullup and wetting right through it with a day's worth of held in pee.  We have noticed she sometimes seems more upset after peeing---does she think that we are upset with her just in general for needing to pee?  I can't imagine it---I know no-one at school would make her feel that way, and I know we don't, but I wonder if her mind just doesn't quite get the concept of toilet training, and someone sees the point as being not supposed to urinate at all.  Who knows?

Or maybe the screaming is her realizing her limitations.  I often wonder that.  Does she want to tell us things she doesn't know how to say?  Does she somehow understand what she can't do?  Or is she able to do things we don't know she can, and she is sick of us not getting that?

Maybe, the screaming is just an artifact of a brain with differences.  Maybe sometimes, the screaming is just triggered by an errant electrical impulse in her brain.  It's impossible to say.  We look for triggers, but so often, there are none we can see.  And so sometimes the best way to handle the screaming is to just accept it.  That is what I settled on doing last night.  I tried to see it as a part of her---not something I need to fix or figure out, but just what Janey was, right then.  I patted her back, I gave her a bath, I talked to her.  I didn't refer to the screaming.  I tried to assume she had no control over it, and that is would pass when it was ready to pass.  And it did.  She had a fairly good night, after a long screaming spell.  She screamed a little in the night, but not a lot, and is often the case, she is cheerful this morning.  We will see what the day holds.   But I'm thinking sometimes, part of accepting Janey is accepting that there are going to be behaviors we just don't understand, and maybe never will.

One morning with Janey (and thoughts about progress)

Janey woke this morning at six, which is a pretty typical time for her.  She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth.  She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed.  I think she has a fear of being alone.  She got up and right away started her morning list of wants "Strawberry milk, please!  Toast and butter, please!  I want bacon!  I want oatmeal!"  Breakfast is her big meal, and she ate most all of those!

After eating, Janey wanted some videos, and I put them on, and changed them at her will.  She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset.  So now she is relaying on good old fashioned VHSs, which don't fail her much!  After a bit of watching, she fell back asleep, which is another new pattern for her.  It makes it a little tricky getting her ready for school.  I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.

Dressing goes fairly well, and hair brushing relatively well.  Janey doesn't care for her hair being brushed at all, but she now tolerates.  I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me.  I got her teeth brushed and her coat on and we got out the door.  However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails"  I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.

The ride to school was great, as it's Christmas music season!  We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells"  Janey was clapping and smiling and laughing, and I loved seeing it.  She was so thrilled just to hear the songs she knows, and appreciative of the arrangement.  I love seeing her enjoy music!

When we got to school, Janey insisted on bringing the book in with us.  That made me very happy.  It's recent she's falling in love with certain books, and I couldn't be more thrilled.  I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!)  These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over.  With the recently discovery she can at least read some, this means even more to me.

Janey walked into the school with a smile, holding her book.  One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.

On my drive home, for some reason I started thinking about progress.  On the outside, it might seem like Janey hasn't made a lot of progress over the years.  If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't.  She still doesn't talk much.  She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters.  She isn't fully toilet trained.  She doesn't dress herself well.  She requires watching every second.  She is still very, very autistic.

However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways.  From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be.  She is still very tough.  If you compared her to other kids her age---well, that would be depressing.  She is still intellectually disabled.  However, through her own maturing and our own increasing ability to understand her, she is progressing.  She's making significant progress, in ways that can be felt more than quantified.  An ordinary morning, broken down, is a series of little moments of progress.  You go, Janey!

Thankful

Today is Thanksgiving Day in the US, and I am indeed feeling thankful.  Here's some of the reasons why---

1.  I live in the right time in history.  In the past, Janey would not be able to go to school.  We would have been blamed for her autism, or we would have been told to put her away and forget her.  Or worse.  Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.

2.  I have a wonderful husband.  Tony, I couldn't do it without you.  Literally.  I think I'd be dead by now.  You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days.  You are there for the good times, too.  You make her bacon whether she eats it or not, just because she likes the process.  You sing with her, recite Three Stooges with her, delight in her good moods.  You are amazing.

3.  By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head.  The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.

4.  Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.

5.  I am so thankful for music, and for Janey's love of it.  The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.

6.  Modern medicine.  I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it.  I'd have died long ago from preeclampsia when pregnant with William.  Tony wouldn't be here without insulin.  Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven.  And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.

7.  All of you, and the internet that allows us to connect.  Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls.  Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there.  That's pretty darn amazing.

8.  And of course, I am thankful for Janey herself.  Janey, you are one terrific girl.  You are beautiful, fascinating, mysterious and so often, a joy.  You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while.  I love you, Janey.

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

The week I won't forget

This past week, this past 5 days, really, have been insane.  Insane in that at least six huge happenings have hit me, ranging from very good to very bad.  I hate being vague here, but most of them are outside of the scope of this blog, or not my story to tell, or not something I can share for whatever reason, but it's been all over the map, starting with Janey reading and including hugely unexpected family news, unsettling health news, a great surprise present, others besides Janey needing my help and moral support and more.  It hasn't been a week I'd like to repeat, partly because I like slow and steady.  I don't like surprises or unexpected news, even good news.  I am left tonight feeling a "what next?" feeling, and I hope the answer is "nothing next".

And in writing this, I might have a partial answer to a the WHY of one of the tough parts of the week.  Janey has started being very aggressive at school, lashing out in physical, unacceptable ways.  It's horrifying to me.  It's literally nightmare-inducing, lots of nightmares night after night.  It's possible she is reacting to all the turmoil that I would have liked to think I kept hidden.  Nothing that has happened has resulted in outward scenes at home or a change in her routine, but I have been distracted, overwhelmed---and Janey always know more than I think she knows.  Perhaps she's reacting to that.

Or perhaps not.  Talking it over with Janey's wonderful teacher, we both were frustrated by the lack of a pattern to Janey's outbursts.  Looking at things from a behaviorist point of view, you want to think that if you can understand the reason why, you can avoid that situation, or work on that situation.  But Janey sometimes truly seems to do things out of the blue.  She can be seemingly as calm as can be, when suddenly, WHAM---she's lashing out.  It's scary to see.  It happens at different times of the day, aimed at different people----kids her age, younger, older, adults---it doesn't seem to have a pattern.  It seems to come from within.

I hope, like so many of Janey's moods and stages, this one passes soon.  I hope it isn't replaced with a crying all day stage, or a screaming all day stage, or a lethargic, progress-erasing stage.  I hope a lot of things.  It's one of those nights when I can't keep up the positive attitude I try so hard to keep up.  Autism is tough, folks.  It might not be in vogue right now to admit that, and there are days when it's not as tough as others.  There are days when it's almost the dream you want---an alternative kind of normal, a different but still great trip to Holland.  But today isn't one of those days.  Today it's a scary, unpredictable and tough ride.

Janey can read!

Yes, indeed, you read that title correctly.  Today was the first time that something I've suspected for a while was shown to be true.  Janey can read!  Here's how it came about...

Janey's long, long good mood seems to be coming to an end.  That's the bad news.  She had a rough weekend, with lots of crying, being sleepy in a way that seems like trying to escape her world, screaming, biting herself and so on.  Not a total loss of a weekend, but not a good one.  This morning taking her to school, I had a feeling it wouldn't be the best day.  And tonight I got a call from her teacher, and as I suspect, it was a tough day.  BUT...

Janey, when she's upset at school, often wants to take a walk.  Her school is set up like a big doughnut, so you can do a loop around it, and she was asking today over and over to take a walk.  Her teachers use that as a motivational tool---they tell her she can walk once she finishes a talk, or sometimes, once she gets 5 stars.  This time, to start the surprising stuff, she looked at her chart, which had 4 stars, and said "One more star!"  Wonderful stuff.  Then her teacher gave her an object naming task on the iPad.  This was also partly to get her distracted, as she was starting to scream, so they were going through it quickly.  The iPad showed 3 pictures, with the word written out below the pictures that was supposed to be picked.  They were reading her the word, and she was picking the pictures quickly, hoping to get done with the task.  Then Amy, her teacher, hesitated for a minute before reading one word, Dog, and Janey, without the word being read, picked the dog!  Amy held her breath and went to the next screen, and again, Janey picked the correct picture without having it read.  She went on to do ten in a row!  Far beyond anything chance would allow---Janey was READING THE WORDS!

I've suspected for a while that Janey could read a little.  She can certainly read her VHS tapes.  We have long since lost all the covers, so it's only the tapes themselves, and some of look identical except for the names of the videos.  Janey will bring one and ask for it by name---"I want Kipper's Playtime", always knowing correctly which tape it is.  But that's a very specific situation.  Now she has shown she can actually, truly read!

Amy and I both know it might be quite hard to re-create the situation in which Janey read.  In fact, right after Janey read for both Amy and her ABA specialist, Michelle, they tried to get Janey to do it for the regular ed teacher in the room---no dice!  But knowing that the reading is something she CAN do opens up a whole world of possibilities for teaching Janey, both at school and at home.  Interestingly, Janey during this tough past weekend was obsessed with a book, Dog's ABC by Emma Dodd, and wanted us to read it over and over.  She was also just spending a lot of time looking at the pages.  I wonder if something has kicked in, a code has been broken and she is getting that written words are representatives of spoken words.  

Reading is my joy.  I love to read.  The thought of possibly sharing that joy with Janey---wow.  WOW.

Six Great Weeks---Why?

The last six weeks or so with Janey have been the best stretch we've ever had.  By far.  She has been happy, sweet, fairly talkative, fun to be with...she has been incredible.  And so of course because I'm never one to just let sleeping dogs lay, I have to try to figure out WHY.  Because I want it to last forever, against all odds.  So here are what I think the reasons are...

1.  A great classroom, with fantastic teachers, a wonderful ABA specialist, aides that get her, classmates that love her, schoolwork tailored to her, an afterschool program she enjoys..what everyone would dream of in a school.

2.  The right medication mix and dosages.  I hate giving credit to medication, but once we started the current regiment, it seems like whatever inner demons keep Janey from being engaged in the outside world, whatever torments her that we can't in any way control, has quieted down.

3.  Better sleep to some extent.  Janey's sleep is still far from ideal, but she is going back to sleep more easily when she wakes up in the night, and is sleeping a bit longer hours.  Part of that might be finally finding a meltable version of melatonin, which we give her when she wakes in the night, and part of it might be the cooler weather or who knows what, really?

4.  The "snuggle on Mama's bed" breakthrough.  When I finally figured out what Janey wanted when she said "Snuggle on Mama's bed", it made a big difference.  It means she wants me on my bed, where she knows where to find me.  She doesn't ask for this day and night, which would make it impossible for me to do and still live a life, but when she is anxious, she seems to need the security of knowing exactly where I am and that she can come get a hug when she needs it.

5.  The Screaming Room.  When Janey starts her ear-breaking screaming, which is still happening now and then during this great stretch, we have started consistently taking her into the bathroom and telling her that is the screaming room, and we will stay there as long as she screams.  It seems to shorten the spells, as she wants to do more interesting things than the small room allows.

6.  A good vicious circle.  When Janey is happier, I think we are more confident that any upset won't last for days, as it literally used to when she got upset.  So we react more calmly and perhaps firmly.  Reacting this way is impossible if she's been crying for days and shows every sign of crying for days more.  You just can't be rational in that situation, but if the crying is isolated, you can be.

7.  Luck.  You could have all of the six things listed above down perfectly, and Janey could still be in a horrible mood.  I know that, and I feel incredibly lucky this good mood has lasted as long as it has.  I don't take it in any way for granted, and I know it could end at any time.  There is so much we don't understand about our girl.  We don't understand her moods or their triggers at all well.  We are left guessing, as I am doing here.

As we head into the holiday season, I hope beyond hope that Janey stays happy.  If she is happy, all the rest is a bonus.  If she is happy, we are happy.  If she is happy, then autism and intellectual disability and all the rest matter not a whit. So I am crossing my fingers, knocking wood, tossing salt over my shoulder---whatever it takes.  We love you, Janey.

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.

Trick or Treat or Not?

Halloween was my favorite day of the year growing up.  It seemed just plain magical.  You dressed up, went to people's houses, knocked on the door and they gave you candy.  What holiday in the world could be better than that?  Since we lived in the country, people got around to trick or treat by having parents drive them.  I used to think that the only thing in the world that could make Halloween better is to live in a place with LOTS of houses close by, so you could by walking get to TONS of houses and get tons of candy.  Bringing up my boys in a suburb-like part of Boston, that came true.  I loved every Halloween when they were little enough to go out----here's a picture of them looking extra scary one year!

However, with Janey, it was never as straightforward.  She went out with the boys once she was old enough, and I think I can remember her enjoying it when she was 2---excitedly saying "Treat or treat!" to people but not getting the candy part, which was cute.  But then she regressed, and although we still took her out with the boys for a few years, she was not really interested.  She often wound up in the stroller just observing.  Once the boys were big enough to go out with friends instead of us, I would try taking her to a few houses, and usually, she would pretty quickly balk and cry.  Last year, I took her to just one house, and she was not at all happy with that.  And so, this year, I'm not going to try.

I have to admit that it's hard for me to give up on Halloween with her.  It's hard to admit that she really has no idea what it's all about, that she doesn't enjoy it, that trying to get her to participate is much more for me than her.  She doesn't like to dress up, she is scared walking around in the dark, she isn't hugely motivated by candy unless it's just the kind she wants, and she hasn't got the ability to anticipate the fun, which I think is what makes holidays the most exciting as a child.  I remember counting down the days till Halloween every day of October, and when the day actually arrived, it would just seem incredible that it was there.  I'd daydream and daydream about the candy, about trading with my sister, about the way that bag full of treats smelled.  Janey isn't able to do that, I don't think.  She isn't going to feel left out not going out.  So why is it so hard for me?

I think as parents, we feel somehow like we should be completely altruistic.  We like to think we do things like helping Santa or buying birthday presents or making up Easter baskets to make our kids happy.  And we are right, but we also do it because it's fun, because it's a way to step outside everyday life, because we want to relive our childhood a little.  I don't think we are wrong to do things for our own joy some.  Not at all wrong.  That is part of what makes parenting a child with autism a challenge.  Some of the built-in joys of parenting aren't automatically there.  There are other joys, to be sure.  There are alternate joys, and they are real and wonderful.  But I will admit---I wish tonight I was dressing up Janey in a costume.  I wish she had woken up thrilled that the day was finally here.  I wish she was going to be fighting to keep on going to another street, even when she could barely hold all her candy.  I wish we were going to be negotiating over how much she could eat before bed.  I wish all that, and I will admit it.  I wish it for me, selfishly.  I wish it for Janey, as it's a joy she won't get to have.  I am struggling now to think of a way to close that is upbeat, and at the same time saying to myself "Get over it!  It's a minor issue in the larger scheme of things!"  So I'll let that voice of reason close for me.  Happy Halloween.

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

Perfect

For those of you who might not know, the Red Sox are in the World Series right now.  Living in Boston, it's hard to believe there are those of you in parts of the US or the world who might not be aware of that.  We are a Red Sox Nation family.  With the Sox, it's not even so much being fans.  Loving the Sox is more than that.  It's part of you.  And our family by fate keeps getting intertwined with the Sox.  Freddy worked this past summer for NESN, the station that broadcasts most of the regular season games, and he met a lot of players.  Tony used to work for the ticket office of the Sox when I first met him, and we got to go to the Red Sox Christmas party, an amazing event.  We used to work with a relative of Mo Vaughn, and got to go to quite a few games and sit with the players' families.  And of course, I grew up in Maine, solid Sox country.  Every summer, the game was on everyplace.  It was always there, in the background. It meant the most when my grandfather was watching.  He was old enough to remember the World Series win in 1918, and I wish more than anything he could have been alive in 2004.  But that's enough Sox talk.  I'm setting a background here for last night, as Tony, Freddy, Janey and I watched Game 4.

We had to turn off Kipper to put on the Sox on the "big TV" in the living room.  It's a sign of Janey's progress that we were able to do so feeling fairly sure that if she was upset by that, she'd get over it pretty quickly, and she did.  She likes it when we all are together, having fun and being loud, so she was enjoying the game for that reason.  She doesn't get baseball, much, but lately she's been very interested in a plastic wiffle ball and bat, and asks Tony all the time to "play baseball", which means he has to hit the ball and she watches.  We did that a little during the game, and got her to scream "Go, Sox!" and in general just were enjoying ourselves.

Then something prompted me to sing the beginning of "Away in a Manger".  I'm not sure why, because I try to save Christmas songs for at least after October.  Janey loves Christmas music, more than almost anything, and me singing the first line was enough for her to start singing the rest.  She sang the second line, and then the song switched to "America the Beautiful"  She sang a line or two, and then Freddy jumped in when she stopped, singing another line. They went back and forth like that for the whole song.  Both of them have amazing voices---Freddy's is deep and rich, and Janey's high and pure.  As I listened, the tears came, rolling down my face uncontrollably.  And I thought "This is perfect.  This moment right now, with the game on and my kids singing together---it's a moment from a dream. It's a moment from the dream we all have of being a parent, the moment where absolutely nothing could be better"  And thinking back, what strikes me is what was absent.  I wasn't thinking "This is perfect when considering Janey's autism".  At that moment, her autism wasn't a factor in any way.  It wasn't perfect with a footnote, or perfect with a "considering..."  It was just perfect. No matter what the future brings, no matter what the past has held, autism has no dominion over moments like that.

The Scream

The Scream.  How do I describe The Scream?  It's hard to capture in words.  Picture someone who has just been told the worst news possible, or something who is undergoing the most severe pain of their life.  Then picture it suddenly, unexpectedly, coming from a sweet looking nine year old blond girl.  That is Janey's Scream.

Last night was a scream-fest.  Tony picked up Janey at afterschool, and she started the scream on the way home in the car.  By the time Tony got home, he was shaken.  He looked like someone who had just witnessed something horrible.  I took over.  About every 3 minutes, Janey screamed.  She screamed like she was in pain beyond imagining.  Her whole body stiffened, she turned red, she put every ounce of energy into the scream.  It was bloodcurdling.  Between the screams, she was fairly normal---a little upset, demanding, but not too bad.  But then---the scream.

Of course we tried to figure it out.  Was she hungry?  Was she hurting?  Did something scary happen?  We ask the useless questions that never get answered.  We try to comfort her, but the screams seem to put her in some world beyond our reach.

Finally, I took her into the bathroom.  I latched the latch that is up high, that she can't reach.  I told her we would stay there until she stopped screaming.  I didn't try to stop the screaming beyond that.  Between screams, she reached for the latch, and I repeated we were going to stay where we were until the screaming stopped.  The latch seemed to give her a focus, and although she screamed a few times more, she calmed down.  I told her we could leave if she was done screaming, and she echoed "ARE YOU DONE SCREAMING?"  We left, and a minute later, the scream returned, so we went back into the bathroom.  She didn't fight me about going there.  She screamed a few more times, and then again asked to leave, and we did.  No more screaming.  She was fine.  She woke in the night a lot, as she so often does, but it was cheerful waking.

What does this scream mean?  What causes it?  I have no idea.  In some ways, it seems to have replaced the crying.  Maybe it's some strange kind of step forward.  Maybe it's an expression of frustration, as Janey starts to realize that she is not able to do what other kids can.  Maybe it's something she does just because she can, a way of saying "I'm here!"  I just don't know.  Like so much else with Janey, I just don't know.

Including those who will never catch up

I got to Janey's school a little early today.  I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit.  Today was beautiful, a lovely fall day.  The morning play area was covered with leaves and sticks and acorns and all the things kids love like that.  Some boys were playing football.  Most everyone had on something Red Sox, in support of the home team playing in the Series tonight.  It was one of those great Boston mornings.  Janey was very happy running around.  Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.

It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents.  I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids.  I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.

I think this reflects society as a whole.  We embrace, often, disabled children, but disabled teens or adults make us uneasy.  There's probably a couple reasons for that.  One is that we like to think we can "fix" kids.  Sure, let them take a while to catch up.  Let them be around other kids, and have it "cure" them.   In time, they will be just like everyone else!  They just need lots of love and patience!  The other reason is kind of a vicious circle.  Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust.  "Look, that big girl can't talk!  She's making strange noises and waving her arms around!  We better steer clear of her!"  We're more tolerant of a range of odd behaviors in the young.

But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible.  The reasons for this might be different than when she was younger.  She's not going to catch up.  She is probably understanding less and less of the mainstream curriculum.  She's not going to suddenly be able to make meaningful friendships with the kids in her class.  But in a way, that's all the more reason to have her around them.  I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids.  I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less.  And it works both ways.  As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her.  By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute.  We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.

It seems like there is a point, an invisible line, where many professionals give up.  They seem to say "We gave it a shot.  It didn't work.  She's never going to be part of real life.  It's time to give up on that and find a place for her away from everyone else"  I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions.  Not from her school, not from her teachers or administrators  or aides or even the other students, but from the "experts".  Maybe she represents a failure to them, someone that didn't get fixed.  But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.

I have to admit...

The last few weeks have been great ones for Janey.  She has been happy almost all the time, fairly talkative, good at school, fun to be with, aware of her toys and books as she has rarely ever been before---she has been a joy.  I wrote about how last weekend was so scary with her brother William, with college anxiety.  Thankfully, SO thankfully, he seems to doing much better now.  It helps us be able to help him that Janey was so happy.

I think I have a poor memory for emotional states.  When Janey is happy for any length of time, I forget how hard the other times are.  And when she's in a tough stretch, it's truly hard for me to picture how the good times feel.  But I do, after this long, always keep in mind that her emotional states seem to change about every two weeks.  I don't think she's ever had a very good stretch longer than two weeks.  She's had a few bad stretches that lasted maybe a month, but the VERY tough parts usually, again, are about two weeks.  The two weeks were up today, and on schedule, Janey broke down.  She barely slept last night, waking over and over to cry.  This morning, she was inconsolable for a few hours, just screaming, the new extra loud scream she's working on.  

However, gradually, almost unnoticably, over time I am realizing that she is able, with our help, to get her moods under control a little better than in the past.  It's not easy, but in the past, a mood like this morning meant the two weeks were starting, and that there was not going to be any letup for a while no matter what we did.  But today, Janey is now at least calm enough to be switching shows around on Netflix, and she actually watched The Care Bears for about half an hour---the longest she's watched a show in a while.  She truly does seem able to try, with help, to control her crying.  I think she's maturing, and we are also learning a little what to say to her and do with her to help her.  For example, this morning I realized she might be confused about whether today was a school day or not.  Tony was home, but he was home for a long time during the shutdown, so that got confusing, and Freddy left the house around the time he'd usually leave for school, for the PSAT.  So Janey might have been thinking "What the heck?  Is it a school day or not?"  I went over it with her, and whether that was it or not, it seemed to calm her down a little.  We also fed her a lot, which is one of the more reliable ways to calm her.  I dressed her---she doesn't care for lounging around in pajamas much, and I've figured out that with trial and error.  Who knows how the rest of the day will be?  But I don't feel desperate, as I have other days that started with crying.

I've heard from people with older girls or with adults with autism that it does get easier, and I think I can see how it works now.  It's not a miracle breakthrough, it's not a real change in the autism or in parenting.  It's little things, like gradually figuring out what sets Janey off and how to respond to her, or her learning, slowly but steadily, what we expect of her and how to control her emotions just a little.  When I say slow, I mean so slow that years can go by and you don't see a change, but one day you realize---"Gee, it's been a while since Janey screamed for two weeks without stopping!" or "Janey was crying this morning, but just now she's not!"  Baby steps.  Things that parents with only typical kids might see as no steps at all.  But I have to admit it's getting better---maybe not better all the time or so much better, so I can't totally quote the Beatles, but it's getting better.