The summer of the virus

I'm thinking of all of you this summer, especially those earlier on in the whole autism journey.  Every day, I picture how hard it would have been to have a summer like this one if Janey was still as unhappy as she was for many years, and if her behaviors in showing that unhappiness and pain were still as intense.  As it is, it's not totally easy, of course, as it isn't for anyone on Earth right now, but it's nothing like it could have been.

We chose not to "send" Janey to summer school.  I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day.  It was a no-brainer to turn it down.  Zoom meetings quite simply don't work for Janey.  We tried our best during the school year, for the hour a day her class met.  At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour.  At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day.  Either way, it wasn't in any way worth it.

I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings.  I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond.  This wasn't the case with all the kids in her class.  Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey.  That surprised me.  But as we all know, every kid with autism is different.  I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.

One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to.  Or at least she has less liking of repetition she hasn't herself chosen.  She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while.  She'll eventually get bored and cycle in something new.  But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well.  I felt for her teachers very much.  They had not signed up to be virtual teachers or educational technologists.  They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way.  And it just didn't work for Janey.

A typical scene this summer, watching videos outdoors

So---the lack of school this summer feels like a huge relief, truly.  I have no idea what I'll do in the fall if schooling is still virtual.  I don't think Janey will be going to that kind of school if it is, one way or another.  We will have to explore our options.  I also just don't know what will play out if school requires masks all day, and 6 foot distancing.  I know that Janey would not be able to comply with that.  She will wear a mask for very short time frames, just to be able to go to the 7-11 and get ice cream or chips, but all day long---that will not work.  I worry especially about the bus---there is no way it would work there.  I worry about her getting COVID, about her teachers or bus drivers or paras or another else getting it from her or giving it to her. It is hard to picture how it's all going to play out.

How are we at home, aside from all this?  Not bad, overall.  Janey has been fairly happy and content.  She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that.  We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30.  The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible.  If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8.  But the amazing thing is she is actually mostly staying on her bed once we say to.  The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever.  It's nice.

It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period.  The only other time she has was when we gave her medication under the supervision of a specialist.  This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on.  It's awful to see her crying in pain, and knowing she doesn't really get why it's happening.  I've done my best to explain it to her, but I don't know how much she understands.  We have been lucky that for whatever reason, she usually doesn't get a period.

I hope all of you are well, and surviving this tough time.  I'd love to hear how you are coping.  Is there summer school where you are?  How do things look for the fall?  How is it going with masks, with the isolation, with the general tension a pandemic brings?  I hope very much you are all healthy and hanging in there, and I send our love.

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home

When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

The Weeks Inbetween

Janey starts school in a week and a half, on the Thursday after Labor Day.  Boston starts later than almost any school I know, but then of course they also stay in school much later, into late June.  Of all the weeks in the year, I'd say these weeks in between summer school and regular school are the longest feeling.  Especially this year---we had the early summer excitement of our trip to Ohio, and the later summer excitement of the big wedding, and now...nothing.  It's very, very hard to keep Janey happy during weeks like these.  Tony is at work, William is back at college and although Freddy is helping a good deal, he also is spending a lot of time with friends before he and they also go back to college.  So it's mostly Janey and me.

How do I fill the days?  I'll be honest, they have mostly been filled with TV and videos.  I don't know what I'd do without them.  It's not that I don't want to do other things.  But taking Janey anywhere on my own is so tough.  Yesterday, we did a trip to the grocery store, and that wasn't even just me---Freddy went too.  Lucky that he did, because Janey decided to fling a jar of salsa she wanted into the cart.  It might have been okay, but it hit a jar of spaghetti sauce and WHAM.  The cart and floor and all the food we'd already gotten was covered with salsa and sauce and glass.  And Janey was very excited by it all.  Freddy stayed with the cart as we waited for cleanup, and I took off with Janey to another section of the store.  We had planned to buy a lot more, but we grabbed a few things, salvaged what we could that was covered with sauce, paid for the lot and the broken stuff, and took off while the getting was good.

Early in the week, another big exciting trip, to the Rite-Aid drug store.  Janey was enjoying herself and being good until something upset her, who knows what, and she started to scream the ear-piercing scream.  It took all the calm I had to get her in shape to quickly buy my stuff and again, get out of there.

We've done some walks.  That's tricky too, as Janey will suddenly decide she's had enough, and that means she doesn't want to walk back.  I live in fear she'll get upset enough to jolt away from me and get hurt.  So we have to keep the walks extremely short, within sight of the house.

At home, I mostly serve as a show changer.  Some of Janey's shows are on Netflix, some on Hulu and some on Amazon.  Switching between them is a bit more than she can do.  She always knows exactly what she wants to watch, but the hard part is telling me.  We scroll through lists of episodes, and use a modified kind of sign language, where she points to the right or left to tell me which way to scroll, and then to herself when she finds the show she wants.  Then, because she often watches parts of shows, we have to figure out if she wants the show back at the beginning or where she left off.  It's about 50-50, but it's also 50-50 whether she'll say what she really wants.  "From the beginning" can mean "where I left off" and if I get it wrong, it's an automatic scream.

I don't mean to sound like a complainer here, although of course that's partly what I'm doing.  But what bothers me more than anything is that I feel like Janey deserves more.  I think it's a boring life for her at times like this.  I wish she was doing the kind of things I did when I was 12 at the end of the summer---spending nights at friend's houses, going for walks in the woods, reading and reading, playing cards with my sister, even working babysitting and in my mother's store.  By the time I was 12, my world was fairly open, as open as a pre-driver's world can be in the country.  Janey's world is very closed.  She has school and home.  I do feel good we went a few places this summer, but I still feel very sad at times that her world is so closed in.

I'll close with a picture of Janey doing her favorite thing during times like this, picking out a treat at the "ice cream store".  That's the highlight of her day, I think.  It's not enough, but it's something, and it makes her happy, and sometimes that is all we can do.

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!

By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

What to do about hitting???

I'll start by saying that from what I've read, the majority of kids with autism are not aggressive.  By saying that Janey is, and that her hitting and other aggression are becoming a big problem, I'm not saying that's a trait most kids with autism have.  However, some do.

I say this because I think there's a reluctance in the autism community to really talk about aggression.  We don't want our kids with autism labeled as being aggressive.  I can understand that.  But for those of us with kids that are indeed prone to acting out aggressively, talking about it openly is important.

Janey lately has taken to hitting me whenever she is denied something she wants.  As you could guess, that means a lot of hitting.  Any request that's reasonable and do-able, I do respond to positively.  However, as anyone whose ever had children knows, not all requests are like that.  When Janey wakes at three in the morning and wants to go to the store, or when she decides she wants to wear a bathing suit to school, or when she wants to watch her TV show during the one hour of the week that Freddy is watching a show, or when she wants Daddy to come home immediately in the middle of a work day---well, we can't always say yes.  And more and more, our saying no is met by her whacking me hard in the face.

The problem with almost all methods I've seen cited for dealing with hitting are that they assume two things Janey doesn't really have---impulse control and an understanding that other people have feelings.  I can say firmly "No hitting.  That hurts me."  Okay, but for that to do a bit of good, Janey has to be able to think before she hits, and she has to care that she hurts me.  At this point right now, both of those are beyond what she can demonstrate.  I'm not saying she can't control herself at all, or that she has no compassion.  I'm saying when she is angry, whatever amount of control and compassion she does have are out the window.  When she is calm and  happy, she might be able to use some self-control and to be very sweet and caring toward me, but when she's calm and happy, she's not hitting.

The other big theme I see often used in talking about dealing with aggression is to figure out the cause, as if somehow doing that will fix the problem.  Well, in most all cases, I know the cause.  The cause is being told no.  It doesn't take rocket science to understand the cause of Janey's aggression when she says "Want to go to the ice cream store!" and I say "Not right now" and she hits me.  I don't think there's a hidden reason or a lack of communication there.  She states plainly what she wants, I saw no, and she hits me.

So---how do I deal with this?  For now, what seems to work best is a riding out the storm method, a "least said, soonest mended" kind of thing.  As hard as it is, I try to react minimally to being hit.  If I show pain or anger, that escalates everything.  Janey is hugely responsive to tone of voice and to the mood of a room.  So my natural instincts, to scream "STOP HITTING ME!", put things into a state where it's very unlikely Janey IS going to stop, or going to understand why she should stop.  If I can walk away, ignore her as much as possible and try to as quickly as possible get things back into a good mood state, the net results seems to be a reduced amount of hitting.

However, it's not always possible to stay calm.  Janey is getting bigger all the time.  Her hitting isn't just a nuisance---it hurts.  It hurts a lot, and as she gets bigger, she is going to be able to do serious damage.  And even if I somehow are able to remain calm, I can't expect the larger world to do the same.  I get the brunt of Janey's hitting, but she's certainly been known to hit her brothers, and occasionally, kids at school, teachers and staff and more.  How can that be dealt with?  Frankly, I just don't know.

I don't enjoy writing about Janey being aggressive.  I wish more than anything that the whole issue would just go away.  But I don't think it's fair, to me or to Janey, to pretend that it doesn't exist.  As she gets older, more and more I am going to need help with this.  I'm going to need help to physically stay safe, and keep Janey and others safe, and by being honest now, I hope I can help us, and others with kids like Janey, get that help.

World Autism Acceptance/Awareness Day, through my own Janey lens

Well, here it is again, that day that I am sure is like Christmas for all of you out there---World Autism Acceptance/Awareness Day!  All sarcasm aside, sometimes I'm a little glad there's a day of the year set aside for autism---a day that is about what every single day is about for my family and me.

I thought I'd write about Janey's afternoon yesterday.  It illustrates the best and the worst of how autism affects Janey, and therefore affects our family.

Pictures I took this morning of Janey

Janey got off the bus in a fairly cheerful and mellow mood.  She was happy to find some chips to eat, and we had a quiet and companionable half hour as she ate them next to me.  Freddy got home then, and Janey was happy to see him.  Her hands were covered with chip dust, and he said if she washed them, he'd take her to the ice cream store, as she had asked (as she asks every single day after school).  After a few reminders, she washed them like a champ, and he kept his promise and took her to the store.  They both came back in great moods.  Freddy remarked on how very good she was, and how much fun they had.  The ice cream store (as most of you know, actually a corner convenience type store) is only a few houses and then a few businesses away from us, on the same side of the street, and now as we pass our neighbors' houses, we no longer have to hold Janey's hand.  She loves that---she skips along singing.  We take her hand again by the gas station, as Freddy did yesterday.  It was great seeing what a good time they both had, and Janey ate her ice cream happily.

A nice moment before they left---after Janey washed her hands and Freddy told her he'd take her to the store, she hugged him---her full-on, somewhat overwhelming hug.  Freddy was quite touched.  She is gradually showing more and more of an interest in her siblings, and it was really a nice moment.

Taken within three minutes, they show her changing moods.

So---great afternoon, right?  Well, then it took a turn.  Janey decided to graze the refrigerator for something more to eat.  She found raw turkey meat.  Freddy caught her in time and told her to put it back, and when she came over to sit by me, I said "Janey, you know we never eat meat that hasn't been cooked"  Evidently, that was something she found unacceptable to hear.  She hit me on the nose, very hard.  I grabbed her hands and said "No you don't!" and she lunged hard at me, trying to bite me with all her might.  I yelled to Freddy for help, and he carried her away to a chair and held her back as she tried as hard as she could to bite him too.  Being unable to do that, she kicked over a coffee table by the chair, with Freddy's afternoon coffee on it.  It spilled all over the floor.

Freddy told her, very calmly, that she needed to clean up the coffee.  And so started the 20 minute siege.  She was not inclined to clean up the coffee.  She wanted instead to bite Freddy.  He stayed calm and insistent, telling her to go get the paper towels, which she finally did, after about three biting attempts.  Then, again interrupted with many, many lunges at him, she very, very slowly did clean up all the coffee and threw away the wet paper towels.  By the time that was over, we were all exhausted.  Janey got her iPad and sat quietly and cruised YouTube.

It's not all smiles, so we take them when we can!

And that is Janey---albeit, a rather extreme example of Janey at her best and worst.  That is what we are aware of every day.  That is what we have leaned to accept.  Sometimes it's very easy to accept Janey.  Sometimes, it's very, very hard.  And as I talked about yesterday, accepting doesn't mean liking always, or not liking, always.  Sometimes it means adoring.  Sometimes it means despairing of.  But if I could tell the whole world about autism, I would like them to understand both sides of it.  I don't want a gauzy unicorn and rainbow filled fantasy autism image.  I don't want a horrifying, Autism-Speaks-Style tragic view of autism.  I want people to know Janey, and to know all of your girls and boys, all the many, many faces of autism.  I want them to know the stories, and to know the children we love so much.  Janey, this day is for you.  I love you so, so much.

Trying to give Freddy one fair afternoon

Lately, I've been thinking a lot about sibling issues and autism.  I think this has been triggered by the realization that next year, Freddy will be in college.  Of course, I saw this coming, but now that he's gotten some acceptances and some good financial aid, it's hitting me as reality.  And I've been thinking about how very often, Janey's needs come before those of her brothers.

Our family setup is such that it's often come fairly naturally to put Janey first, or it has seemed that way.  She's seven years younger than Freddy to the day (Freddy doesn't even get his own birthday!) and ten years younger than William.  She's the only girl.  So she's been set apart in the family, not just by autism but by relative age and sex.  And to be honest, I think sometimes the boys have half liked it that we couldn't focus on them as much as many parents.  Teenagers, although they do still very much need parents, sometimes like having a little more independence than some of their peers.  But so much hasn't been fair to them.  I know there are compensations, and I've read and agreed with so many articles and blog posts about the benefits to siblings of having a sister or brother with special needs.  However, I sometimes very, very much wish I could give them all the attention and resources they deserve.

Janey and Freddy

This afternoon, I decided on the spot that for once, I would put Freddy's needs first.  There wasn't anything special about today, except that every afternoon Freddy has left being in high school and living at home is special.  I wanted to let him be the sibling that got the attention.  Well, that wasn't easy.

The first test---Freddy and I decided to watch last night's episode of "The Voice" on Hulu.  A friend of his from school is on the show right now (go, Nathan!) and we knew he'd advanced, and we wanted to see his performance.  Janey had other ideas.  She kept trying to turn off the TV, succeeding a few times.  She whined non-stop..."I want Kipper!  I want Barney!  I want Olivia!"  mentioning every show she could think of, in hopes we'd give in.  And so many times---we do.  It becomes just not worth it to listen to her when we are trying to watch something.  But she actually likes The Voice, when she will watch it.  She likes dancing to the songs, she likes the singing.  And even if she didn't, I was determined to watch with Freddy.  We did see his friend's part, but after that, we both gradually drifted away.  It wasn't worth the fight to see the rest.

Next, I wanted to help Freddy pick classes to sit in on during a visit at a college he's been accepted at next month.  I love things like that.  I LIVE for things like that.  He got to list 3 choices from a long list of classes for both morning and afternoon.  I would have loved to sit there for hours, looking up the classes, discussing the options and just enjoying the whole process.  But again, Janey had other ideas.  After just a few minutes, she decided she wanted to go to the ice cream store.  I said no.  She repeated the request, with growing impatience, over and over and over.  I wasn't giving in.  Finally, she hit me in the face and bent my fingers back.  I felt close to tears at that point.  Couldn't she ever, EVER just for a little, short while, understand no and accept no?  And the answer is..no.  No matter how often I stand my ground and don't give in, it seems to make no difference.  Once she has an idea, a want, that is all that matters.  I did get through the choice process with Freddy, but in a hurried and not enjoyable way.

Tony came home after that, and took Janey for a ride for a while.  You might think---why didn't I just save everything with Freddy for that time?  If you are asking that, you probably haven't had teenagers.  You spend time with them when they are up for it, or not at all.  That's one of the reasons, but the other is that I just felt tired of always, always having to say "Wait until Daddy can watch Janey.  Wait until Janey is asleep"  Sometimes, I want Janey to be the one to wait.

Later, Freddy wanted to watch "Star Trek Voyager".  Tony was home, and usually, Janey will tolerate that show.  For part of the time, she did, but then she decided I needed to snuggle with her.  This is often how she gets to sleep, and almost always, I'll just lie down with her.  I almost did this time too, instinctively, but stopped myself and told her "I'll snuggle when the show is over"  Of course, she wasn't happy.   She just kept repeating,over and over and over "Want to snuggle?  Want to snuggle on Janey's bed?  Want to lie down?" I finally gave in when the show was in its resolving last few minutes.

So---what did I learn here?  I don't know.  I think I learned I often, very very often, give in to Janey, because she doesn't give up until you do, and because the consequences of not giving in are pretty grim at times.  I don't like being  hit, or having my fingers bent, or having someone scream in my ear, or being bit.  But when I don't give in, it never seems to work as it would with a typical kid.  Janey doesn't seem to get my reasons or accept them.  It seems, like so many things, to really make no difference what I do.  Janey does what Janey does.

My boys both are wonderful kids, and they both have told me, emphatically, that they don't feel I've shortchanged them.  But from a young age, they haven't known any other life.  I am resisting the urge to go silver lining finding here.  Autism takes a toll on siblings.  And childhood is short.  My boys are adults, or close to it.  I've tried to do my best, but they have often been shortchanged, and I won't sugarcoat that.

The snowiest week in Boston history---some notes

The past seven days have broken the Boston record for snowfall amounts, by 10 inches.  Needless to say, there hasn't been much school---one day out of the last 5.  Janey is home again today.

How is it going?  Well, not as badly as it might be.  Not great, but not terrible.  As an old friend said on Facebook, Janey's in a routine now---a no school routine.  She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride.  It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible.  So she's home.

What have we been doing?  Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing.  It pains me to write that, but it's true.  When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge.  For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.

We've been doing a good deal of reading, too.  I love this.  I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them.  She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored.  We read through a long treasury twice last night, and Janey knows every rhyme by heart.

Tony has been home a lot of the time, and he's done a lot of cooking for Janey.  This is one of her biggest joys.  He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants.  She loves the whole process.

Of course, there has been some hitting, kicking, biting and so on.  We are still struggling hard to figure out just how to handle this.  For a while, we were having success with time out in the bathroom.  However, Janey has started to like this time out.  The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately).  I was trying to get her to sleep, and said no.  So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!"  I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.

More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge.  Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV.  We were all bored of it, but too lethargic to turn it off.  Janey went over and turned off the TV.  This almost always gets a quick response from us, but none of us said a word, because none of us cared.  Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!"  We had not followed the routine.  But how do we use this knowledge?  Most of the time, her turning off the TV is NOT something acceptable.  We have to let her know that's the case.  But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior?  Who knows?  What can we do?

Hopefully, there will be school tomorrow.  And that will be an adjustment for Janey once again.  I can't imagine what life feels like for her much of the time.  She doesn't understand so much of it.  Sometimes there's school.  Sometimes there isn't.  Sometimes we can walk to get ice cream or go get a Happy Meal.  Sometimes we can't.  Sometimes turning off the TV is very naughty.  Sometimes no-one seems to care.  Sometimes everyone is awake and ready to cook, to read, to talk.  Sometimes it's dark and nobody wants to do anything.  That is life, but it's very hard for Janey to understand.  When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

An Oasis of Wonderful

Janey's mood the last week has been up and down.  If the mood stablizers are working, they are working to overall raise her mood a bit on average, not to really smooth it into a stable mood.  I would certainly say she's been cheerier on average than she was before she started taking the new medication, but the moods are still swinging pretty severely.  We are seeing more patterns.  Janey often wakes up screaming.  This seems to be due to her usually waking up wet and hungry, which are things we can do something about.  She often after that has a very good morning.  As the afternoon wears on, her mood deteriorates a bit, and usually there's a pretty low point about four pm.  She rallies a bit at dinnertime, but gets fussy around five or six.  She's been going to bed extremely early---usually at six or so, and getting up very early too, about four or five am.

Yesterday was Tony's first day at work after a week off.  Janey does not like Tony to be at work at all, especially when she's home from school.  So I tried to keep her busy and on the go.  I needed to drop William off at work at 11.  He works at a Whole Foods which is part of a very upscale outdoor shopping center near here, and I decided to walk around with Janey after dropping him off.  Just the fact I felt I could attempt that is a sign of her improvement over the past few months.

The time at the shopping center was absolutely wonderful.  I saw that without any exceptions.  Janey was a pure, pure joy, and I felt like I was in a dream.

First, we went to a toy store.  Janey looked over the whole store, not getting fixed on any one toy.  She showed lots of curiosity, but was easily redirected to new toys.  She named a lot of toys in delight "A pirate!  A pony!  A whistle!"  Then, we went to an ice cream shop she often sees when riding along to drop off William and always wants to go to.  We don't take her often, as parking is tough and the ice cream place is hugely expensive, but I decided to do it this time as a treat.  She had a scoop of chocolate chip, and ate it in total contentment, sitting by the window and watching people walk by.  Lastly, I went to a store she had no interest in, a paper store, to use the last of my Christmas money to buy a hugely overpriced calendar I'd been craving.  Janey was patient and well behaved the whole time we were in that store.  We headed to the car after that.  I didn't want to push my luck.  I felt like I'd lived through an hour of a miracle.

One thing that kept striking me in the stores was that not only was Janey being so good, she was being better (in my eyes) than other kids around her.  The stores were full of bratty little girls (it just happened to be all girls we saw)  They were begging for everything, whining even while getting all kinds of treats, saying mean things to each other and to their parents---they were being all the things that Janey just isn't.  Janey, as any reader of this blog knows, is far from perfect.  It would be hard for me to argue that any child who attacked a room full of people in an emergency room less than two months ago was perfect.  However, Janey doesn't beg for toys.  She doesn't whine for more treats in stores.  She doesn't say mean things to us.  She was thrilled to be around the toys, without really understanding I could buy them.  She loved her ice cream, without begging for more scoops or more toppings.  She turned several times and looked at me during our walking around as if to say "You are amazing!  What a wonderful time we are having!"  She danced to the music playing over the loudspeaker, danced unself-consciouly with me.  She was in so many ways the child I would have dreamt up, if I were dreaming up my little girl.

At the last store, the paper store, the cashier was taken with Janey and kept saying "She is so beautiful!  What a sweet girl!"  When we were leaving, she said "Goodbye, honey!"  I prompted Janey to say goodbye, and she did.  I fought back an urge to do what I so often do, to tell the cashier Janey is autistic and doesn't talk much.  I fought it back not because I didn't want the cashier to know that, but because I was quite sure she already had seen Janey had special needs.  As Janey gets older, most anyone is going to be able to see she is not typical.  And somehow, I realized at that moment that I don't need to always explain that.  I realized that Janey is special sometimes in ways beyond the special that is part of "special needs"  I realized, that in my eyes anyway, she is special far beyond that.  It didn't matter that the afternoon went seriously downhill after the great morning.  I will treasure the memory of that early in the year shopping trip for a very long time.

Growing Up Fears

The other day, I glanced at Janey asleep on her bed and had the thought I think every parent has at one point---I thought "Who is that?"  She looked so big that for a minute I didn't recognize her.  Janey is growing up fast.  She is outgrowing her clothes like crazy, she now wears a woman's size 7 1/2 shoe (we all have big feet!) and after always looking younger than her age, suddenly she looks older than her age.  That is something that seems to run in my family---early maturation followed by ending up not very tall!  I am proud of my girl growing up, but I am also scared.

The world isn't as kind to autistic teens and adults as it is to autistic children.  This isn't something planned, but it's the truth.  I fight it very much myself, when I see an adult acting obviously oddly.  I tell myself "That is Janey some day" but there is something instinctive that makes me uneasy, that puts up a little guard.  I hate this about myself, but I have to be honest.  We expect kids to act in unpredictable ways, but when adults do, it takes a minute to see that they have special needs.  Here's another post by the mother of an autistic girl that tells of these worries very well----link here.

There is also the deadline that hovers over all of us in the alternative world of fairly severe special needs---age 22.  The schools will educate Janey until she is 22.  Then, she is an adult, and there is no more requirement by anyone to educate her.  I hope very much there will be programs in place for her at that point, but it's not a certainty.

These things combine to make me wish time would slow down.  Janey getting older isn't going to lead to the milestones we dream of for our kids---college, marriage, a job, kids of their own.  Janey getting older means for a large part the same Janey, but in a bigger body.  That must be incredibly frustrating for her, to the extent she understands it.  When I think about that, I can understand her screaming.

Of course, there is small ways in which Janey does get more mature, and I love seeing them.  Yesterday after school we went to the ice cream store, the neighborhood market.  It's just a very short way from our house, and Janey was impatient with my slow walking.  I made her stay next to me most of the way, but on the way home, I told her once we were just in front of houses that she could go ahead.  She ran to our driveway, and then turned and came back to me.  I told her she could go down the driveway by herself, and she ran and did that.  I thought about how just a year ago, I would not have dreamt of letting her run ahead of me, and I felt proud of her.  She is progressing in little ways all the time.

In thinking about Janey's future, I wonder if we are preparing her for it in the right way.  I think about what she learns at school.  School is set up for a future that it's unlikely Janey will ever have.  She is learning things that are meant as foundations of reading and writing and as an ultimate goal, a career or college.  She doesn't learn these things easily, or at all.  I wonder sometimes if her time would be better spent learning other things---how to prepare simple meals, how to do small house chores, and very importantly, how to enjoy the things she can enjoy---running, music, swimming and things like that. More and more, time spent trying to get Janey to say letters or count objects seems a bit wasted.  But when she learned how to throw away her own pull-up, how to put her clothes in the hamper, how to pour herself a glass of water---those things made her life and our life and her life happier and easier.  I picture a goal of her someday maybe walking to the ice cream store on her own.  We would watch her go, maybe trail her, but I picture her going in, picking out the ice cream, taking it to the counter and giving them money.  The workers there are so kind to her---we could prepare them ahead of time for her visit.  And she could walk home on her own.  That is a goal I would love to aim for, maybe 5 or 10 years from now.  It might seem like a little thing, but working toward that might make more sense than working toward reading.

The next big step our society is going to have to prepare for is all the current child with autism no longer being children.  We need to think seriously about what we would like their lives to look like, what THEY would like their lives to look like.  That is what I am going to start doing with Janey.  I think she has a chance at a happy life.  It's not going to be the life that most people lead, but I can see it being a life that has its own meaning and joy.  That is, I can on hopeful days.  On discouraged days, I am terrified of that future.

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

Knock on Wood

Janey has been in a good mood for a week and a half now, knock on wood. It started when she went back to school after vacation, and it's been great. She's cried very little and has just seemed to enjoy life a lot. As I've said before, when she is happy, it all seems very manageable.

A friend asked me if she's been talking a lot since she's been in the happy mood. That was a good question, as that's sometimes the case, but not this time. I think often when she talks the most is when she's feeling a little manic. This is more of a calm happy. I do think this is when she learns the most, though. She is calm enough and receptive enough to be taking everything in, although she might not show what she's learned.

The last few rides home from school have been so nice. Two nights ago, Janey said "Do you want to go to the CVS chips store?" which of course means "I want to get chips at the CVS" She rarely talks to me at all on the way home, and I love it when she does. She also asks at the right time, before we are passed the store. She's always very aware of where we are in our drive, which is not the case with her older brother Freddy! I asked "Do you want Pringle chips or Dorito chips?" and she answered right away "Pringle Chips!". However, at the store she saw the Doritos first and changed her mind. I reminded her we don't eat the chips until we are in the car, and she was such a good waiting girl, even when we were in a long line with all kinds of people in front of us that seemed to be using ATMs to pay for the first time in their life. I just felt so proud of her behavior and happy to be having fun with her, getting her a treat.

Last night she thought she'd try again and asked again for a chips stop. I thought that was probably a bit much, so I suggested a stop for ice cream. She didn't answer right away, and I asked "Strawberry Ice Cream YES, or Strawberry Ice Cream NO?" That sometimes works, not often, but after about two minutes I heard her pipe up "Strawberry Ice Cream YES!" She was such a delight getting the ice cream, so excited and happy and well behaved. I had her tell the owner what she wanted, and she said "ice cream!" She ate the bowl completely.

So, among the days that are tough, there are good days. I love it when Janey and I can just have fun together. On days like that, I truly am not a bit bothered by her delays, or by her general autism. It's funny---before you have kids, there's the classic thing that you say "As long as they are healthy" which I think usually really means "as long as they are normal, as long as they are intelligent, as long as they aren't slow" And when you are given a child that isn't those things, you change. You see people getting worked up over their child having trouble with algebra, or not making some special team, or not being on track for a top college, and it just seems...well, silly. And I don't like to say things like that, as I do understand those feelings. But on the other hand, Janey makes me see that just a happy day getting a treat can be all you'd ever want being a parent to be.