Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

(Good) Time(s) in a Bottle

The last week with Janey has been wonderful.  She's been in truly a delightful mood.  We've gotten very good reports from school, she's laughing and happy at home, she did not have a tantrum ALL weekend last weekend, she is sleeping well and eating well and being as sweet as she can be.

I was thinking about the old Jim Croce song last night, and wishing I could save this time in a bottle.  Of course, we hope it lasts forever, but it won't.  I'm not being negative in saying that, I'm being realistic.  Janey's moods are extremely cyclical. A few weeks ago, we hit quite a low, and now, we are in a high.  And I don't think anything we do or not do has much impact on these mood cycles.

With Janey, everything works and nothing works.  When she is happy, everything works, all the ideas we have as to what keeps her happy.  She is happy with a routine, with lots of music, with plenty of car rides, with her favorite foods, with our willingness to change videos for her constantly, with being outdoors, with lots of attention.  When she is unhappy, none of those things help.  When she is happy, NOT following routines, or taking rides, or having a lot of music, can make her a bit upset, and we start to see the edges of unhappiness creep in, like arm biting or a worried face.  When she is unhappy, not following the routines is a disaster, but sometimes only to a small degree over the constant disaster-like unhappiness.  It makes me wonder how much we really affect her moods at all with what we do.

I don't know how common it is with autism to have such severe mood swings.  Much advice about autism seems to assume that behaviors have causes that are external.  This can be frustrating to me to read or hear about.  If you look at what works for Janey from a perspective of ABA type thinking, thinking that behaviors have reasons, you get very inconsistent results.  On days she's happy, you might think you've figured it all out.  I've fallen into that trap many times, even knowing what I know.  I think I've figured out a breakthrough, only to realize all I've done is helped a bit with a bump in the road in a day that is overall happy.  When I try to use the same approach on a bad day, it's completely useless, or helps only to turn Janey's behavior from "Should we go to the emergency room right now?" bad to "I think we might be able to make it through the night, just barely" bad.  It's like turning on a bright light in a sun-filled room, or taking away the light of one star on a starry night.  Neither of those things greatly change the already set general level of light.

So we are left with just riding out the storm, or in the case of the good times, enjoying the ride.  You can't put time in a bottle, but I wish we could.  I'd store the last week until eternity comes, and again I would spend it with Janey.

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place

What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.

Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

On looking for positives, medication and feelings

Yesterday, the positives were a little easier to find.  They still took some mining, but not quite the all out intensive mile deep mining operation they had the few days before.

The change, and I hate to admit this was the change, was that we put Janey back on her medication.  Tony took her to her psychiatrist on Tuesday night, after things just getting close to completely unbearable with the screaming and aggression, and we got the okay to put her back on the two medications she'd been taking for a while (not the new one she took before getting sick)  I hated to do it.  But it's not about what I hate.  It's about Janey, and she certainly showed us that once she felt physically healthy again, she needed that medication.

What the medication does it make it possible to actually try other ways to help Janey---to calm her down just enough so that we can use other methods along with the medication to keep her happy.

Yesterday was a long day, still.  Janey, although screaming much less, still was doing her routine of asking to go to Maryellen's house, over and over.  Toward the end of the afternoon, she hit me when I said no.  She did this after seeming to think about it a moment, like she was thinking "Hmm, maybe a good slap in the face is what Mama needs to understand me.  I'll give it a try!"  There was that much of a delay.

I decided to try a little dialogue.  I said "Ask me again if we can go to Maryellen's house, and I will say no"  I didn't want to set her up to think I might say yes.  She asked again, and I said no, and then said immediately "Now you say 'I feel ANGRY, Mama'"  She said it, and I immediately did the whole positive routine---the high five, thumbs up, A-Okay, with a big hug and praise.  I then did the routine over again, about 10 times.  She loves routines and repeated speech, and she loves the praise bit, so she enjoyed it.

Then she surprised the heck out of me.  Around the 11th time we did the routine, instead of saying "Angry", she said "Sad"  I was truly taken aback.  I hugged her over and over and said "You feel angry AND sad!  Great job talking!"

I decided the time was ripe for some more feelings talking.  I had her guess my feelings, something that is very tough for her.  I made a very angry face, telling her beforehand I was going to, because I didn't want her to think I was really angry, and then I asked her what the face was.  I had to prompt her a lot to get her to say angry.  I did the same thing with sad.  Then happy, and she guessed happy much more easily.  In fact, she often said "happy" for sad or angry, which makes me wonder if she is confused about how people are feeling a lot of the time.

She gave me another surprise.  I asked her to make the faces.  She can't do angry or sad on command at all, although she can do happy---maybe because she WAS happy right then.  I was thinking she really didn't get making faces.  But then I asked her to do surprised.  I showed her a surprised face---no luck.  Then I said "Surprised faces have very wide open mouths.  Try surprised" and she did---perfectly.  I should have known.  She is so auditory.  A face that can be explained in words is so much easier for her to understand.  It made me feel a wave of sadness at how hard it must be to be that auditory but to have such a very hard time talking.

I hope today is again a calmer day.  It's been a long stretch here waiting for summer school to start.  It finally starts Monday, and I have to admit I'm looking forward to it like Christmas.  I kind of bet Janey is too.  We've had enough of each other, but I do hope we will end this long sickness/summer stretch on a slightly higher note.

Pictures sometimes lie

I love to take pictures.  It's a bit of an obsession with me.  Yesterday we went to a friend's lakeside cabin.  We were delighted to be invited, because Janey adores the water, boats and the friend.  I took a lot of pictures, and in looking at them, I thought a lot about how I sort out which pictures I actually keep and look at.

I don't save a lot of pictures of Janey when she is upset, screaming, unhappy, lashing out or crying.  There's a couple reasons for this.  Of course, I want to remember her as happy, and not sad.  Also, I've read a lot of opinions that people feel it's just wrong to post pictures of their kids when they don't look their best.  The argument usually is that it's not fair to the children.  I also, like most people, just like happy or calm pictures best.

But it's striking me lately that pictures lie.  Or they don't tell all the truth.  If you look at all the pictures I have of Janey, it would be very hard to really know her story.  I don't take many pictures of her when she's biting her arm, or hitting someone, or crying hysterically, or screaming.  I take pictures where she looks, for the lack of a better word, close to "normal"

And so, when looking at yesterday's pictures, a lot got left out.  Janey had a wonderful time most of the time, yes.  She was happy in the car all the two hour ride up, she danced with happiness when we got out, she was thrilled to "ride" in the docked rowboat, she had a great time going in a little paddle boat with her father and brother, she ran around in the big yard joyfully for a long time.  But around five, the witching hour, she lost her cool.  She screamed for a long time, and then, when I tried to comfort her, bit me, very hard, on the hand.  On the ride home, she tried over and over to bite Freddy.  We came home a bit discouraged, although the majority of the day was great.

But looking back at the day, the hard parts won't be documented.  And sometimes, I think this does our kids a disservice.  I know when thinking about my life, I don't like it to be whitewashed.  I don't want to think every single moment was joy and contentment.  Is that what we want our kids to think?  Janey's anger and sadness are a big part of her life, but by blocking that out, either through choice or from societal pressure, we are left with a sanitized view.  People would be forgiven, if they didn't look further than pictures, to think autism was an interesting and quirky variation on the norm.

I don't think I'll start taking or post more pictures of Janey when she's upset, though.  I'm not quite there yet.  But I wish that I felt freer to do so, both freer from within and freer from without.

My surprising thought, twice this weekend

Twice this weekend, I had a thought that I don't usually have.  I thought "I'm glad Janey is autistic".

I hesitate to even write what I wrote above, for a million reasons.  A few of them---I don't want to ever be a Pollyanna, someone saying that autism is a blessing.  And the inverse---I don't want to say that I usually don't want Janey to be who she is.  My usual state of thinking goes along the lines of wishing that Janey wasn't affected by the tough parts of autism.  Autism hasn't been terribly kind to Janey.  She is not one of those autism poster children, the kind that I think are pretty rare in real life, the kind with futures so bright you have to wear shades.  Autism has taken away much from her.  But that doesn't mean that she isn't an amazing person, someone I value very much just as she is.  But feeling glad she's autistic?  No, usually not.

So what happened this weekend?  Well, first, I realized that despite my burying my head in the sand, soon both boys would be out of the house.  We put the deposit down for Freddy to go to Skidmore College this fall.  He went to visit for three days there, a preview of life without him home.  Next year, come September, both boys will be in college.  It's harder than I ever pictured it would be to face that.  Of course, I am thrilled my boys are going to college, to colleges that will challenge them and allow them to explore their interests.  William loves Brandeis, and I think Freddy will love Skidmore.  But they won't be at home, and selfishly, that is very hard for me.  I loved being the mother of teenagers.  It will be very, very quiet without them.  And then I thought---this probably won't happen with Janey.  She isn't going to leave.  We get to keep her home.

It's a sign of how Janey's moods change that during her worst times, the thought of her being home forever leads me to despair.  But she's in a sunshine mood lately, and I have become by necessity very good at putting aside bad times when times are good.  When Janey is happy, none of the rest matters.  It doesn't matter that she isn't toilet trained, that she has a hard time talking, that she has very few academic skills.  It only matters that she is my daughter, my funny, unique girl.  Now, a few weeks from now, when the screaming and sadness most likely will have returned, I know I will feel differently.  I'll still love her desperately, but I won't feel as optimistic.  But I'm talking about how I feel right now.

Not our actual soup, but something like this!

The second time I had the "I'm glad Janey is autistic" was a littler thing.  Tony had made up a big soup of various vegetables.  We get a bin of organic fruits and vegetables every week, and he loves trying them.  He was sharing with Janey, and noted, as he often does, that she was only eating the green stuff---the kale and collard greens, not the rutabagas.  And I was thinking how much she loves the foods she loves, and cares not a bit or even knows that most kids don't like what she likes.  I was thinking about her dream mornings on the weekends, watching Tony cook and eagerly eating what he makes her.  And how most 10 year old girls would already be at the stage where a fun morning at home with Mama and Daddy, eating greens, would not be a thrill to the point of dancing around.  And again, I thought "I am glad Janey is autistic"

The truth is, of course, I'm not glad Janey is autistic.  This is because Janey's autism isn't her.  It's something she has.  You don't love a child for things they have or do, you love them for being them.  I don't love my boys for getting into college, for their senses of humor, or even for their kindness to their sister.  I love them because they are my sons.  And I love Janey because she is my daughter.  I love her just for being her.  But at times, I can love, separately, the traits that she has that are partly because of autism.  I can love the life situations that autism creates, like knowing she will probably never leave home.  I don't love autism.  But I love Janey, a girl with autism.

It's a Happy Day!

The title of this post is what Janey just said to me a minute ago.  And it's the truth---it's a happy day, and it's been a pretty happy last 4 or 5 days.  This fact is amazing considering the fact that we are in the middle of Boston's snow nightmare.  It's snowed and snowed and snowed and snowed.  There's at least 40 inches on the ground.  There was no school today or yesterday, just like last Monday and Tuesday.  Eight snow days so far this year.  We've all been stuck home together since Saturday morning.  And yet, Janey has been happy.  A joy, really.

What's going on?  I don't know.  I'm knocking on wood every few minutes.  I have a few theories.  One is that Janey's new medication is working, working very well.  The dose was raised a few weeks ago, and it's the kind of medication that takes a while to build up in the system.  Maybe, finally, whatever has haunted Janey's brain and made her so unhappy so much of the time has been calmed down.  The medication is an anti-seizure medication also used for mood disorders.  Maybe Janey was having seizures we didn't recognize, or maybe she truly is bi-polar.  Or whatever she is/was, maybe we finally hit on the right combination of medication.

Another theory---a lot of time at home with us often seems to, after a while, make Janey happy.  She likes routine, and if she's going to school, she likes it to be steady, so that would seem to mean that being off and on home would not make her very happy.  But we have all been home, and stuck in the house, and spending a great deal of time together.  I remember a few other times that that was the case, and how after a bit, Janey seemed to make jumps forward.  Her talking would get better and her understanding would seem to increase.  Maybe a lot of one-on-one constant attention from two adults and one near-adult is something very good for her.

And maybe, it's just random.  Janey's moods come and go.  She's had wonderful mood spells before, and this might be just another one.  I hope that is not the case, although I'll take what I can get, but I'd rather that something has changed, that something has happened that will actually last.

Janey's talking has improved lately too, something that hasn't happened for years.  It's not something you'd probably notice if you didn't know her very well.  But she is suddenly making statements.  She will say something like "The cat is here" or "I am on the bed" or "I see a book".  That just hasn't happened much in the past.  A cute example from today---Janey said to Freddy "It's Halloween!"  A statement, although not really accurate.  Freddy said it was nowhere near Halloween, and Janey said, just as cheerily "It's not Halloween!"  The very best statement---the other day, Janey was doing her rounds around the house, reciting videos, when suddenly she said, in a completely regular voice, not sing-songy or echolalia sounding "I love you, Daddy".  Well, that was a moment.  Needless to say, Tony was very, very happy.  And I was a little jealous!

It hasn't been perfect, of course.  Four or five times a day, Janey is still getting very upset, screaming and sometimes biting her arm or trying to hit us.  But these episodes are getting shorter and shorter.  And I've been able to distract her, by suggesting almost any activity---watching TV, reading a book, looking out the window.  That is very new.

Whatever it is, it's been wonderful.  I've written so many upset and sad and depressed and downbeat posts that it's great to be able to sincerely write a happy, upbeat one.  This snow period is something else again, and we are expecting two more storms soon.  But if the snow somehow brought in Janey's recent moods, I say---let it snow.

Beyond Acceptance

Autism acceptance is one of those catch phrases that takes on a meaning of its own, but if you ignore anything that has been added in meaning to the phrase, of course I am in favor of autism acceptance.  The opposite of acceptance is rejection, and I can't reject autism without in essence rejecting people with autism, because autism doesn't exist outside of the people WITH autism.  So yes, I certainly believe in autism acceptance.

It gets a little more complicated than that, of course.  As it often seems to come back to lately, there's a big gap here between low and high functioning autism.  Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job.  She isn't going to ever most likely be out in public without someone taking care of her.  She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself.  I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them.  How does that work into it?  Am I not being accepting of her when I try to get her to say what is bothering her instead of crying?  Is trying hard to toilet train her not accepting her?  When I insist she keep herself clothed, is that unaccepting?

And what about going beyond acceptance?  What if I sometimes DELIGHT in Janey's autism, not just accept it?  Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism.  And that is odd, because is it okay to ACCEPT her but not to delight in her?

Here's a few examples from last night.  Tony got home from work and Janey was thrilled to see him, as she almost always is.  She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on.  She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home.  Later, Tony needed to drive me to an event at Freddy's school.  We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat.  She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that.  She was just excited to be going for a ride with Mama and Daddy.  On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.

Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism.  Typical 10 year olds would not probably do those things.  They were more two year old type behaviors.  But we loved them.  Janey's good moods are a treasure, especially coming off a few tough weeks.  And her behavior was made more delightful BY the autism, not DESPITE it.

My point here is that acceptance is a pretty lukewarm word.  I certainly accept Janey, but my relationship with her autism is more complicated than that.  Sometimes, I feel autism despair.  Sometimes, I feel autism delight.  Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful.  Catch phrases don't really cut it when describing how I feel about autism.

Downs and Ups and Downs

With Janey, part of what makes every day an adventure is you don't know which Janey you're going to get that day.  That's been particularly so this past week.  Usually, Janey's moods last a few weeks or so, but lately, they have picked up the pace and seem to change every few days.  It's emotionally a roller coaster.

Last Friday was a very tough day.  Janey got home from summer school about 3.  She had had some tough times all week after school.  I spent a lot of the day Friday while she was at school trying to think of strategies to help the couple hours between when she gets home and when Daddy gets home be happier ones for her.  I planned out a list of things we could do, depending on what she wanted---lots of snuggling, watching videos together, having a shower, playing outside, eating, reading---whatever she wanted.  I planned to be totally at her disposal, or to just let her rest, if that is what she wanted.  I was determined it would be a good afternoon.  Well, she got off the bus crying, and things deteriorated from there.  She wanted to do nothing I had planned.  She wanted to scream.  Between screams, she wanted to SAY she wanted something, like a drink, a snuggle, a shower, time outside, and then as soon as I tried to do that thing with her, she wanted to scream some more, and bite her arm, and fling herself down on her bed, and be hysterical.  I was tired out of my mind after half an hour or so.  In frustration, I finally yelled out "I can't take this any more!"  That stopped her cold---she seemed interested in the phrase, one I don't think I've ever said to her before.  I really don't like saying things like that to her, ever.  She took it up herself, and started adding it into her screams---a good long scream, and then "I CAN'T TAKE THIS ANY MORE!"  Which I bet she couldn't.  I finally just kind of gave up---I let her scream it out, while of course keeping a close eye on her to make sure she didn't hurt herself or try to leave the house or anything.  Tony got home, and she instantly dried her tears and hugged him.  I felt about 2 feet tall.  

So....I wasn't much looking forward to how the day would go Saturday.  However, somehow, by some twist of fate or miracle, both Saturday and Sunday were amazing.  It was probably the best weekend we've ever had with Janey.  Ever.  She was extremely happy, extremely engaged, full of hugs, saying all kinds of cool and relevant things, a joy beyond words.  I have no idea why, any more than I have any idea why Friday afternoon was so awful.  I've been trying very hard lately to live in the moment--to not spend the bad moments projecting into the future, to not spend the good moments worrying they won't last---to just accept each moment as it comes.  I've got a long way to go with that, and I am sure I did spend too much of the weekend trying to record in my mind just what circumstances had led to things being so good.  However, I don't think it was anything in particular.  It was as random as any mood of Janey's.  But it was wonderful.  We drove her brother to work both days, and she piped up in the car with comments here and there "Maybe we are lost!"  "Pepperoni Pizza!", and with songs and just happy, non-manic laughter.  We got her some pizza, and she sang "Staying Alive" to the cashier and charmed her.  We went into the Target and tried on hats and glasses and necklaces.  We went to the arboretum near us and looked at trees.  We snuggled a lot, watched some TV, ate a lot, all the glow of her wonderful mood.  At one point, in the car, Tony and I said to each other that when she is in that kind of mood, there is no child on earth more wonderful.  I remarked that if she was ALWAYS in that good a mood, we probably would be used to it.  It wouldn't seem as wondrous.  And we both got teary-eyed, thinking of that.

So...Monday was okay.  Not as happy a day, but okay.  And then today---after school, it was another Friday.  So much screaming and crying and arm biting.  It was hot, and I offered to fill the wading pool.  Janey wanted to, but as soon as we got back there, the ear-shattering screaming started.  For a few minutes, I still tried to fill the pool.  But I couldn't for long.  Her screaming is loud enough to be heard a block away.  It sounds like she's being tortured.  I turned off the water and took her in, where she continued to scream pretty much until Daddy got home, and this time, even Daddy couldn't fit it.  She screamed off and on all evening.

Now she is asleep, and I am weary but unable to sleep.  I wish so much I understood my little girl better.  I wish I could figure out how to give her more happy days.  Seeing how very, very happy she can be, it sometimes makes it almost harder, because I feel like there must be a key someplace.  There must be a way to pry open the door to the happiness that seems to snap shut suddenly and randomly.  But I don't know how.  And she can't tell me.  

Incredibly Little Sleep

How little sleep can people survive on?  Janey seems to have taken on that question with a vengeance lately.  She is sleeping less and less and less.  Since my chocolate vow, she's had no chocolate, and she seems less manic and much happier, but whatever was affecting her sleep is still affecting it.  The last three nights, she has slept about three hours a night.  She goes to sleep around 10 and wakes around 1.  Then she's awake the rest of the night.

We have taken all the steps we can think of to deal with this, of course.  We unplug all media at night now, so she can't watch TV or YouTube.  We lock the doors, which for now keeps her from going out of the house.  She is on medication that for most people, would cause better sleep.  We have tried melatonin.  We've done what we can think of, but still, she just isn't sleeping.

And of course, neither are we.  I think I sleep some in minute-long bursts, because I can't help myself, but in general, I'm awake.  Tony is home this week on vacation, and so I'm napping during the days and letting him get some sleep he needs.  Janey is going to summer school, and she is happy with that---hopping on the bus cheerfully and coming home in a good mood.  Unless they are letting her sleep all day at school and not telling us (which I doubt is the case), she's up all day, and for the last few days anyway, perfectly happy.

Deprived of TV during the night, Janey uses her resourcefulness and recites videos.  She walks around in a loop, through the kitchen, living room and bedroom, reliving Kipper episodes, mostly.  She says the same lines for ten or fifteen minutes, and then switches.  She goes to sleep in her bed, but during the night, comes to our bed and wants us to go to her bed.  We try not to do that, but when you haven't slept for hours, anything that might possibly help her sleep can start to seem pretty appealing, and so we do a bed swap, until the next time she decides to switch again.

From what I've read about manic episodes, I do think that might be what these sleepless periods are.  Janey seems to have endless energy during them, and her mind seems to be in overdrive.  She talks non-stop in delayed echolalia.  I think in the middle of these monologues is when I catch a moment of sleep, and then when she pauses for air, I wake up to check what she is doing.

Somehow, even this incredibly little amount of sleep isn't as tough as the days when Janey cries all day, but it starts to catch up with me quickly after a few days.  I am glad I don't have to drive any place, with Tony home.  I am not getting anything done during the day.  Words are coming more slowly to me even writing this than usual.  I'm living in a bit of a haze.

I don't think this will last forever.  We've seen this a few times before, and when Janey comes out of it, she sleeps a very lot for a few days---naps half the day and sleeps long nights.  We just have to get through it.  She's timed it well, anyway, to be during Tony's vacation.  I hope it's over by next week.  My biggest fear is that I am wrong, and it WILL last forever.  I am not at all sure how I could handle that.  I'm too sleepy to full think it out, which is probably a good thing for my sanity.

When She Was Good...

I don't want to jinx things (I'm a Red Sox fan, which makes me have an unnatural fear of jinxes), but Janey has been in an unusual and special mood the last 4 or 5 days.  She's been in the mood Tony and I call her "precious" mood.  It's one of the rarer of her many moods---very happy without a touch of manic, sweet and lovable.  It's a quiet mood.  She doesn't talk a lot when she's in this mood; she doesn't make any huge strides.  She doesn't much answer our questions, or comment on anything.  She is just quietly content.

It's striking me writing this that it's an example of how it's not the autism or the intellectual disabilities that make things tough with Janey when they are tough.  In the mood she's in now, she would probably appear to an outsider more obviously autistic and "slow" than in other moods she has.  For example, a cashier at a store yesterday tried very hard to engage her---asking her questions, offering to let her hold a book we were buying, waving to her---and he got no response.  When I asked her to give him a high five---the social response that seems easiest for her to consistently do---that even took her about 2 minute to complete, as she slowly, slowly raised her hand.  But she wasn't screaming.  She wasn't biting herself.  She wasn't crying.  She wasn't frantically singing.  She wasn't quoting lines from videos.  We had been shopping for a while, and she was just being---sweet.

Of course, in my quest to always trouble trouble when trouble isn't troubling me, I worry that if these content, quiet moods became the norm, it would be easy to stop trying hard to help Janey.  I wonder what it would be like to have a child always like Janey is now.  It would be hugely easier day to day, I can admit.  But I don't know how much she would learn, or how much we would keep trying to reach her.  Our lives would be very different.

And I'm telling myself---stop overthinking this.  Just enjoy it while it lasts.  And it is enjoyable.  Yesterday, Janey gave Tony a big hug, on her own, because he had shared a big plate of assorted sauteed winter vegetables he'd made with her.  Now, what parent would not love that?  I've been reading to Janey a lot---long picture books she would usually close within seconds, and maybe toss them at me for good measure.  But in this mood, she's been sitting and at least looking like she's listening.  That's my version of the vegetable hug---my own personal parenting dream come true.

All of Janey's moods are part of her.  This mood will change soon, and who knows what we will get next?  I can't control the moods.  I don't control much about Janey.  I'm just along for the ride, and the best we can do is find something in every mood to embrace.  With this precious mood, Janey makes that pretty easy.

Moods without triggers

Sometimes, once in a while, I can figure out what has made Janey upset.  But far more of the time, I have no idea.  The same strangely holds true for times she is very happy. Her happy, contented moods also seem to arrive out of the blue and have no real connection to the world around her.  It's very frustrating, but in a small way, also a little freeing, as I start to come to see how little anything I can do seems to help or hurt.

This week, Janey was up and down, up and down, all around the place.  She had a terrible day at school followed by a great night at home, a great day of school followed by a tough night, whole good days, whole bad days, nights where she slept, nights where she didn't sleep---it was a roller coaster.  Her teachers and I try hard to figure out a pattern, but so often, there just doesn't seem to be one.  For example, this morning Janey woke up happy.  That was after a night with little sleep (but little crying, either).  We took her with us to a thrift store, which can sometimes be very bad news, and we were able to stay a full hour.  I think she behaved as well as any child in the world ever has at a store, special needs or not.  She stayed with us, was interested in everything but didn't grab things, had a smile on her face the whole time, was calm---it was fantastic.  We gave her high praise.  Tonight, although nothing really has happened to change things in the interim, she is screaming and crying off and on continuously.  I don't think it's tiredness, as when she's tired she just goes to sleep.  I don't think we set her off in any way.  I think whatever drives her moods is internal.

I was very affected by the book I read recently, "January First", about a girl with childhood onset schizophrenia.  I don't think Janey has schizophrenia, but I do think she might hear things we don't.  Sometimes there seems to be little else to explain what sets her off.  She can be sitting there, happy as anything, in a quiet room with nothing to provoke her, and suddenly she screams hysterically.  Sometimes after this, she'll recite a phrase for hours---usually something from a video or song.  She doesn't say it happily, she says it in a haunted sort of way.  I wonder if these phrases jump into her head and scare her.

Everything we do to try to keep kids happy, to try to reinforce good behavior, is based on assuming there is a reason for good or bad or happy or sad behavior.  And even if the reason is internal, it's a reason, but what if you have a child that is not usefully verbal, and they are being tormented by internal forces that make them sad?  How in the world do you deal with that?  I have no idea.  On the other hand, although it's much easier to take, how do you explain Janey's extremely happy days?  Nothing seems to cause them, either.

I figure out little pieces of things, as I have lately.  I can comfort Janey a bit better all the time, by constantly analyzing what seems to work to calm her down.  But as for figuring out her triggers---I don't know. I don't know if I ever will, really.  Maybe I just have to accept that---to take whatever Janey shows up each day and work with that.  It annoys me when sports announcers say things like that "The Red Sox just didn't show up today", when they played badly, but maybe that's a useful way to see it.  Happy Janey just doesn't show up some days.  Crying Janey shows up.  The next day, Happy Janey might be back.  Maybe I need to stop trying to fix her moods and start working harder to accept them, to live with them.  Janey, you never, ever stop making this parenting gig a challenging one.

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!

Unfocused Attention

Janey has had quite a few good days in a row lately, knock on wood.  She's been happy more of the time in the past month than I would say almost any month of her life.  It's wonderful.  There are still days with tears, and days like today, where there weren't tears but just quietness---no talking, slow moving, in a world of her own.  But most of the days lately have been happy days.

Of course, I'm trying to figure out what is causing the good days, just like I do with the bad days, so I can try to recreate those conditions.  And I think I have a theory.  It goes back to a day I kept Janey home when it was snowing a lot.  I had worried it would be a disaster, but it was actually a very nice day.  On that day, and a lot since, I've been giving Janey what I think of in my mind as unfocused attention.  That means I'm there with her, but we are both kind of doing our own thing.  For example, I'm doing dishes and listening to music.  She's in the room, dancing around and changing the music now and then.  I talk to her off and on, and I'm right there if she has a request or need, but I'm not right in her face.  I'm not quizzing her, or trying to teach her anything, or trying to make her talk.  We are just together.

Janey constantly asks me to "snuggle on Mama's bed"  I decided about 6 months ago to almost always say yes to this request.  It's one of the few non-food or TV requests she makes.  It doesn't really mean snuggle, but just to be on my bed with her.  She usually has something in her hand, a toy or a book or her iPad or something else to hold, and lately I am bringing a book to read or knitting with me.  I talk to her off and on, we giggle together, we play ghost with blankets, but we both are doing our own thing to some extent.  This kind of time together seems to work better than anything else to get Janey in a calm, happy state.

It's very, very hard to resist a couple temptations that would take away from this time together.  The first is the urge I always have to teach and quiz Janey.  Although it's never shown much of any sign of working in the slightest, I still often try to teach her shapes or colors or letters, or to show her pictures in books and ask her what they are, or to answer my questions.  I am quite convinced, logically, that Janey doesn't learn that way, at least not from me.  At school, I think she does more.  But at home, she doesn't.  She learns from observing, from copying, from seeing something often enough and suddenly getting the spark that makes her want to try it.  But she doesn't learn from drilling.  The other night, we were together in unfocused attention and she had the smile I love more than anything on her face.  She was blissfully happy.  I remembered how that day her ABA specialist had said how well she was identifying pictures of her brothers, and I couldn't resist---I asked her "Who is that boy in there doing homework?  Which brother is he?", pointing in to Freddy.  I was watching her face as I asked that, and I think I'll never forget her look, how it changed.  She went from the smile that would melt any heart to the shut down look.  Her eyes shut down, she stopped smiling, she looked visibly tense.  I saw exactly how it affects her to be quizzed.

The other temptation is to take any moment I can to be totally NOT focused on Janey.  I can only do this, of course, if Tony or one of the boys is watching her.  She can't ever be completely not focused on.  But for years, when Tony was home and able to, I tried to sneak in some time to completely NOT focus on Janey.  Often, this was fine---she was happy with Daddy.  But other times, she was desperate to be with me.  I would get frustrated---couldn't have I have 10 minutes just to myself?  Lately, though, I try to drop whatever I am doing if Janey needs my attention---not if she just wants me to give her some food or put on some show, but if she wants to spend time with me.

I think it took me a while to figure out how to interact with Janey in a way that makes us both happy because I felt I had to make use of every second.  I've read about Floortime, and it got in there someplace in my mind.  I had to challenge her, to complete circles of communication, to do things that got her a little off balance, so she learned!  I didn't stop to look at the results.  Neither of us enjoyed this time, usually.  It's a freeing feeling in a way to have Janey be eight.  I've done my time trying other people's ways.  Now I'm doing what makes Janey happy and calm.  I don't mean I'm allowing her to have anything she wants or do anything she wants.  But our time together is going to be, as much as I can make it, stress-free.  Most of the time, I have faith that if I do this, Janey WILL learn what she is meant to learn.  I look at things she can do now at home, and I didn't teach them to her.  She learned them on her own.  And I don't think she's ever learned a thing while crying hysterically.  She learns when she is calm, when she is happy.  And quite frankly, I am better at parenting when she is calm and happy.  So for now, while it's working, I'm going with unfocused attention.

Janey's various looks---pictures!

Janey in her happy mode.  I love this contented look.

Janey and Daddy eating at a friend's house.  Her cheeks are like mine---they get red very easily!

Janey got at the camera.  These pictures she takes of herself intrigue me, because I think they might show her inner self more than ones that I take.  She takes them because she wants to, when she wants to.  Her hair is crazy, the way she likes it, and she looks curious, like she's trying to figure out how the camera works.

A room full of strangers

William had an overnight at a college that will remain nameless on Friday night, a program for admitted students and an interview for a great scholarship.  We drove up to pick him up on Saturday.  Usually, in a situation like that, Tony would go and I'd stay home with Janey.  It's just easier.  It's impossible to know how she'll react to new situations, and we like times like that to focus on the boys, not on her.  But I've been feeling left out of the college process, and I really wanted to see the college and to get out of the house a little.  So we took Janey with us.

Overall, it went well.  She enjoyed the ride, until the end (she seems to have a 90 minute per day limit on car rides---as soon as you pass that, she freaks out), she loved walking around the campus and she especially seemed to like the big room in the admissions office where we waited for William to be ready to go home.  It was a spacious room, with big chairs and with lots of windows, and for a long time, she just sat there in delight.  She was smiling her huge smile, and to my eyes, not being very noticable.  But still, we got stares.  I tried to tell myself that is was because she was 8, at a college, and beautiful.  But there were other young kids there, and they were not getting stares.  No, it was because at this point, she just looks different.  She doesn't act as you expect a child her age to act, even when she is not making a sound.  And then, occasionally, she makes her happy sound---the long "AHHHHHH" sound.  We barely notice that sound, but other people do.  I sat there trying to feel like an anthropologist, just observing the stares.  They weren't especially friendly stares.  They were pretty confused looking, or at times, a little annoyed.  This was a big day for a lot of these parents---their special high school seniors going to a big college event.  It was not a place they expected to see a little autistic girl.  It wasn't like there was any speech or event she was interrupting---it was just a waiting room.  But still, she wasn't part of their expected background.  At one point, she got very excited and jumped up and ran toward the door.  We did our usual thing---the very firmly and loudly spoken "STOP!" and ran after her.  That got the whole room looking.

So---what is the take-home message here?  I don't know.  I'm not going to keep Janey out of the public eye.  This was not a case where she was truly interfering with or disturbing anyone.  And my attitude I should have is---who cares?  Let them stare!  And I am usually fairly okay with that.  But somehow it bothered me more yesterday.  It felt like I couldn't do a normal rite of passage---visit a college my son was interested in.  Of course those starers were not stopping me, but their looks said a lot.  One woman especially, at the desk, just did not take her eyes off Janey.  At one point, she was going around the room talking to parents, and giving them little bracelet flash drives.  She avoided us.  She walked right past us.  That got my dander up a little.  Finally, I'd had enough of being in there, and took Janey to the car.  She was at the door.  I got passive-aggressive and said "What are those?" as she was holding a bunch of the bracelets.  She said "They are flash drives.  For ADMITTED STUDENTS"  Well, she'd been giving them to a lot of parents.  But I guess she assumed if we had a child like Janey, we certainly wouldn't have any child up for their big special scholarship.  Which we do.  Which I wanted to point out to her, but I didn't.

I guess I want to say---we are out there---those families with a special needs child.  We are everywhere.  Get used to us.  We aren't trying to interfere with your lives.  We are exquisitely sensitive to any situation where we might be disturbing you.  But you might still have to see us---in waiting rooms, in stores, at parks.  We aren't going to hide our kids away.  We don't bite.  Give us a friendly smile.  Talk to us.  You might find out our kids are pretty darn interesting and cool people.

Here's a picture of Janey enjoying the campus, just because..;.

The storm has passed

Janey had a tough week last week, but knock on wood, it appears to be over.  It happens like that time and time again---a rough time, followed by a cheerful time.  And the cheerful times are longer, lately, which is wonderful, but it doesn't make the crying weeks any easier or more able to be explained.  It does help, though, to know they seem to resolve themselves.  When Janey has a tough week, it affects everyone around her, both at home and at school, and when she cheers up, everyone around her cheers up too.  The principal told me today what a good day Janey had had, after her tough week.  It amazes me that she has over 200 students but still is able to notice Janey's moods and take the time to tell me---that's a sign of a very caring principal.  And also a sign of how strongly Janey's moods project themselves.

I wish I knew what caused the tough times.  I've asked myself that here over and over.  They come out of the blue, storm over us and go away, like a winter snowstorm.  I do think there is something cyclical about them, something a little bi-polar in a way.  But I also think they feed on themselves.  I think when Janey starts to cry, it bothers even her.  After all, she has to live with the crying at every single moment, and she probably has no idea what is causing it either.  It's a lot to ask her to calm down.  She has no idea how to, and she is mentally much like a 2 year old in the middle of a tantrum.

We are still on edge a little.  When a storm has just passed, we always are jumpy that we are just in a lull, and she will start the crying again.  I think she feels that way too.  Driving home tonight, she was upset by the music I was playing, and I could see her trying hard not to get hysterical.  She looked nervous---a look I've never quite identified in her before.  She was crying in little puffs---trying to not let it out.  I think she was thinking (non-verbally, probably) "Here we go again.  I can't start the whole crying bit over.  But I don't like the music.  I don't know how to get that across.  I've got to stay in control..."  It was painful to see.  I try to give her the words "I don't think you like that version of Jingle Bells.  I can put on another one"  She looked relieved, for a minute, but then something was wrong with the new version, something she couldn't explain.  Not being able to use words at times like that would be enough to make anyone cry.  I guess in some ways, it's more amazing that she's happy as much as she is than that she gets sad sometimes.

A glimpse at another Janey

Yesterday when I went to pick up Janey at after-school, she was out in the courtyard. I went out to call her in, and saw something that will stay in my mind forever, I think. She was playing ball with a group of kids. They were throwing basketballs and chasing after them---a kind of modified soccer. Nothing formal, the kid of recess game kids play. And Janey was playing with them, completely with them. They weren't "including" her, she was completely like all of them. She ran when they ran, laughed in a non-manic, non-autistic way, was red in the face from the running, happy and coordinated and PART OF THE GROUP. I stood there like in a trance. It was like I had somehow entered a parallel universe, the "normal" Janey universe. She was graceful and athletic---much more so than either of her brothers would have been in a similar situation. She was just another little girl playing.

And then of course the over-thinking took over. I questioned myself as to why I was so overwhelmed and happy with what I saw. I felt guilty---do I wish the other Janey, the real Janey, away? Do I just give lip service to celebrating her uniqueness---do I really just want her to be normal? And of course, a little, I do. Autism is hard. It's hard for us, it's hard for her. But I think there was something else there.

I thought about my proudest moments with the boys. They are moments when they did something I could never do---when they showed me who they were. With William, it was seeing him play guitar and sing on stage. With Freddy, it was seeing him act. They are the moments when you realize they are amazing people in their own right, not because you made them that way. And that was what this moment with Janey was like. I couldn't be part of a sports moment like that. No way on earth. The boys couldn't either. I've never seen either of them at ease playing sports. It's not them. But it's Janey. We've always realized she got the gift of being athletic that shows up very rarely and randomly in both our families, like red hair showing up from some long ago ancestor. It's completely apart from her autism. And that was the gift of what I saw. I saw a Janey that wasn't labeled, a Janey that wasn't a special ed student, or a medical mystery, or a case. It was just Janey, doing something she was good at. And I'll never forget it.