Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.

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.

When Janey was diagnosed

When reading accounts of parenting children with autism, the moment that the family receives the autism diagnosis is almost always written about in detail.  I was reading a few such accounts lately, and it struck me that, although Janey being diagnosed was certainly a fairly major point in the timeline of our lives, I don't remember it as being quite as stark a blow, as frozen in time a moment as often seems to be the case.  I didn't remember the date until going back to the first entry of this blog---it was Saturday, December 8th, 2007.  Janey was three years and almost four months old.

I started thinking tonight about that time, and it became clear to me quickly why it seems a bit of a blur in memory.  It was a horrible time, in many ways---I can say Janey's diagnosis was one of the least troubling parts of the months around that time.  The month before, in November, I had been put on a jury of a murder trial, an incredibly sad murder of a four year old boy.  It lasted three weeks, putting a huge strain on everyone emotionally and logistically.  Janey had started 3 year old preschool in September, half a day, at the school the boys had both gone to, as a regular, non-special-ed student.  So someone had to get her in the middle of the day at school.  Tony missed a lot of work.

While I was on the jury, in the middle of the testimony phase, my sister's fiancee died suddenly.  He had been recovering from heart surgery related to Marfan's Syndrome, and it looked like all was going to be okay.  Getting the call that he had died---I can't even think about it, ever, without crying. The sadness I felt for my sister, and the incredible frustration that I couldn't even go to the funeral, couldn't be there for her as I wished I could without disrupting a huge trial----it is with me still.

Other factions were stressing us strongly during this time.  A very close friend from childhood was going through a family crisis that I won't get into except to say it was the worst family crisis you can possibly imagine outside of a death.  The boys were in 5th and 7th grade, both having a somewhat tough year.  Tony's office was on the verge of closing, and he was looking for a new job within his organization.  And in the background, always, there was the creeping realization that something was happening with Janey, something terrifying.

Janey, about a year after diagnosis

I wish I could remember more about the year Janey was two.  If I had known it was the last year she would talk easily, the last year I'd have a conversation with her, the last year she'd seem truly happy---well, I can't write much about that.  I just wish I'd recorded every minute of that year.  Then again, maybe it's good I didn't.  I have never been able to watch the few videos we do have.

The August before Janey started preschool, we took our three week cross country driving trip.  I've written about that before.  I had started noticing some signs of withdrawal, of odd behaviors, in Janey that June, but it was during the trip she seemed to slip further away.  The day she started school, I asked the special ed teacher in the room (her school was an inclusion school, with a regular and a special ed teacher in each room) to let me know if he had concerns about her.  It was, of course, during the middle of the trial, on an afternoon we had off, so I was able to get her at school, that he told me he did have concerns---quite major concerns.

And so---we got on the fast track to have her seen at a clinic.  She was evaluated (after I filled out realms of paper and did lots of phone interviews) by a developmental psychiatrist and a developmental pediatrician.  And that was the day, that Saturday, that they told us she was autistic.  We got a formal report later on, but by that point, they didn't need a lot of time to see what was pretty obvious, so they told us the same day they saw her.

I don't remember the rest of that day.  I don't remember crying, although I'm sure I did.  I don't remember what we did after the visit.  I don't remember much.  Maybe that is why I started the blog, three days later, to start recording what was happening, to not let it slip away like the first three years of her life seem to have in my mind.

In some ways, maybe it was good that her diagnosis came in the middle of such a stressful time.  Maybe it let us not focus on it.  But I think it also didn't let it quite sink in.  For a variety of reasons, I don't think I truly believed it.  I think I thought we'd have some tough years, sure, but I think there was a part of me that felt it all was a mistake, that I'd play along but not really buy into it all.  Maybe that was my way of coping.

I'm going to write soon about what I wish those early days after her diagnosis had been like, and what I'd do if I knew someone going through early days like that.  But for now I will stop, because I want to come back to the here and now.  I'm glad many years have passed from that time, and our lives are calmer.  I'm glad I will never have to relive 2007.  I'm glad to be here, in 2017, living today's life.  Very glad.

Home from our great trip!

I had big plans to blog a little every day while on the road, but I found out I hate writing on laptops---somehow I constantly move the cursor around and then do something which deletes huge chunks of what I've written, and fun stuff like that, so I decided to wait and write when I got home!

Janey and Michelle at the Toledo Zoo!

What a wonderful trip we had!  The best part, the very best part, was meeting Michelle and her family.  I met Michelle through this blog---she was the first person ever to get in touch with me after reading the blog, back when I wasn't sure anyone at all read it!  We've been long distance friends ever since, and phone friends, but I wanted more than anything to meet her and her family in person.  So we set out for Ohio to make that happen.

We drove out at a slow pace.  Although the total trip would have been about 12 hours if we drove straight, we knew we couldn't do that with Janey.  I split the trip into thirds, and we stopped at 2 different hotels on the way out and the way back.  We stayed 3 nights near Toledo in the middle.

Janey happy at a hotel breakfast

Overall, Janey did remarkably well on the trip---better than I had even hoped.  She loves car rides, so that was a plus. She also loves "hotel houses" and swimming, so I was hopeful, but warily so.  But we found that as long as we kept Janey happy, she kept us happy. We listened to only music she liked, and switched songs on CDs right away if she wanted us to.  I love hearing local radio stations, but that was not to be!  Once we were in a hotel for the night, we set up her iPad (wi-fi was a must) and she was able to snuggle her special pillow and watch her YouTube videos just like at home.  We swam at every hotel we could (one had a pool that wasn't open---NOT a good scene!) and we stopped whenever she asked us to.  That made for long days driving, as at points she asked to stop at almost every exit---she learned quickly that saying she needed to use the potty would get us to stop---but we like seeing what's off the exits, so we didn't mind that much!

The amazing Lindsey!

I loved meeting Michelle's daughter Lindsey!  I wish every one of you could meet her.  I have to admit she opened my eyes a good deal to how much a person who is non-verbal can communicate.  I'm not talking AAC or sign language---I'm talking just by being herself.  You knew exactly what Lindsey was thinking, and she has an amazing, unique personality---larger than life!  Tony said she would have been a huge star of silent movies, and he is right.  We got to spend the most time with her the last night, when Janey fell asleep at their house.  Without Janey being unpredictable and loud, Lindsey sat at the table with us for a long time and we had a wonderful time talking, her contributing to the conversation as much as anyone.

Getting to talk to Michelle and spend time with her was a dream come true for me.  Having girls with autism is what brought us together, but I know that if we had met any other way, we would have been drawn to each other just as much.  We have so much in common, and I felt like I was with a friend I've known all my life.  And having someone to talk to about our lives, lives affected by our girls in so many ways, while at the same time being able to laugh and talk books and about our other great kids and anything at all---that was incredible.  We both had a very hard time saying goodbye.  It makes me think about how wonderful it would be to live near so many of you, to be surrounded in "real" life by the great people I've met through this blog.  But I am so lucky to live in today's world, where I can be with you all virtually.

Happy we've stopped at yet another fast food place!

Janey starts summer school on Monday.  It's a little tough coming back to reality here, but knowing we can travel, and having met my long-lost second "sister"---that was a vacation of a lifetime.

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.

Legoland Discovery Center Boston!

This past week has been vacation week here, and I must say something I never thought I'd say about a vacation week with Janey---it has been relaxing and fun!  For the most part, anyway.  She's been in a banner mood, cheerful and talkative and cooperative and just pretty much a joy.  It's been really something.

Janey looking at Boston in Lego form

And today we had a special treat to top off the week...Legoland Discovery Center Boston!  I was offered tickets to an autism-friendly special time at Legoland by one of the organizers, who had read this blog.  I've heard of bloggers getting offered things like that, but this was the first time it happened to me, and I was quite excited!  However, I really was unsure how it would go.  Janey has never shown a real interest in Legos, and I didn't know much at all about the place.  But I love the idea of autism-friendly times at museums and other venues, and I wanted to give it a try.

Well, it was a huge success!  The event was from 8:30am to 10am, before the regular opening time of Legoland.  I felt worried Janey would want to leave after a few minutes, and I wouldn't be able to write much about what we did there.  However, we wound up staying until around 10:15! (you could stay as long as you wanted, even once the regular opening time started)

Gillette Stadium, Lego style

The other surprise was how much Tony and I enjoyed ourselves.  The coolest part, to us, was the Boston made all out of Legos.  All the big tourist places were included---Fenway Park, Cheers, the Hancock Tower, Old Ironsides, and there were also things like a T bus and commuter rail, Logan Airport and City Hall.  It's really something what you can create with Legos.  Janey seemed to enjoy looking at the Lego buildings too.

Her favorite part, I think, was the two rides.  There was a ride sort of like the Dumbo ride at Disneyworld (from what I remember the one time I was there as a kid), where you go round and round and can also go higher or lower.  With this ride, you did that by pedaling bike-like.  There was also a train type ride where you could shoot spiders and bad guys with laser guns.  Janey didn't try the shooting part, but Tony and I did, and the ride kept score (Tony beat me!)

Fun on a ride

There were areas where you could build with Legos, which Janey wasn't too into, but there was enough else to do so that was fine.  There was also a 4-D movie, with 3-D glasses and special effects like snow.  I loved that, as I've never been to a modern 3-D movie, but Janey didn't last there.  That's what I love about autism events---nobody gets upset if you need to leave.  Tony took her out of the movie area and I stayed for the about 10 minute show.

Tony's cool creation---Janey is unimpressed

Janey enjoying the experience

I talked to one of the organizers of the event, and she said this was the 2nd time they've had an autism event.  She asked us how we heard about it, and told me that they don't like to advertise a lot, because they want to keep attendance low, so only kids with autism and their families are there, but they also want to get the word out to those who are their intended audience.  I can see how that would be hard.  They did send home a flyer from Janey's school, so I think they are doing a good job with outreach.

At the playground

It's wonderful to be able to take Janey to "regular" places, and to not have to worry about meltdowns in lines, overwhelming crowds and stares from her behaviors.  I think one of the best parts is that we ALL can enjoy ourselves, as a family.  So much of the time, it seems like either Janey can enjoy herself, or we can, but not both, and for us all to be having fun together---that's wonderful.

After the event, we walked around the area a bit, and went to a cool little riverside playground and then had a fancy piece of cake in a French type bakery.  It was a whole morning out.

I'll write more soon about vacation week and my thoughts on it.  Tomorrow is back to school.  Often, I would have been counting the seconds, but this vacation, there is a small part of me that almost wishes vacation was longer.  Miracles never end.

Oh, Janey, how can I help you?

Janey, very unhappy

It's vacation week, and Janey is not happy.  As always, it's hard to say exactly why.  She doesn't care for the change of routine that vacation brings, ever, and this one, with neither brother around, seems to be hitting her extra hard.  Tony is working half days, to help me keep my sanity, but even that is tough.  She isn't sleeping well---she was up last night at 3 am.  Much of the day today featured hysterical crying, and when she wasn't crying, she was furious---lashing out at me, asking over and over to do things we couldn't do, just miserable.  And I am asking myself what I so often ask myself---Janey, how can I help you be happier?

An odd moment a few days ago got me thinking about what Janey wants and needs.  I showed her a video of Carly Fleischmann, a girl with autism who communicates by typing.  The video showed her at a coffee shop and illustrated the kind of frustration that builds up when you can't communicate verbally and there are all kinds of sounds and distractions.  Janey watched the video avidly.  Afterward, I told her that the girl in the video had autism, like she does, and that she couldn't talk with out loud words, and talked with typing.  I said maybe we could find some way to help Janey talk more easily, too.  Janey looked at me, with a look she only gets once in a long time, a look of clarity and directness, and said "I know how to talk".  I said "I know you do, but sometimes talking is hard for you.  That's why I'd like to find other ways to help you tell us things"  Janey again stared at me, and said, in a voice that was beyond firm, "I KNOW HOW TO TALK".

Janey has always resisted assisted communication type things---iPad programs, PECS type programs, typing, sign language---anything besides verbal talking.  I have always wondered how hard I should push her to use other ways to communicate, since her talking is often so limited.  But I feel like she has spoken, literally.  It was one of those weird moments---one that thinking back is almost hard to believe happened.  But it did.

And so, Janey, how CAN I help?  How can I better understand why you are so unhappy so much of the time?  Why did you cry and cry and cry today?  Why do you ask, a thousand times a day, to "go see Maryellen" or "Go see Auntie Carrie" when I've tried so hard to explain we can't at that moment?  Why do you want your bathing suit on all the time to go swimming, when we have no-place to swim?  Why do you ask me to snuggle you, and then lash out and hit me and scream when I do?  Why do you want to watch Little Bear, but cry every time we put it on?  Why do you resist toilet training so much?  Why do you bite your arm?  Why is it so hard, so very very very very hard, to keep you happy?

A little calmer, for a few minutes, walking with Daddy.

I would do anything to make Janey's life a happier one.  But I don't know what to do.  I have no idea what to do, most of the time.  And the days go by, and the weeks, and the years, and it's not getting any easier for any of us.

Janey in Maine---a tale of little sleep

Janey and I spent the last five days in Maine, where I am from.  We stayed with my parents.  I wanted very much to visit Maine for a little longer than my usual 2 or 3 day trip this summer, and I wanted Janey to get try some of the things that made summer special for me growing up.  So I decided to give it a try, just the two of us.  William is off to college and Freddy and Tony had to work.

How did it go?  Well----it was a mixed bag.  My parents did what they could to help, and I was glad Janey had time with them.  We did a lot of things---we went to a fair with lots of animals, we visited Pemaquid Point, which is a rocky seashore, my dear friend took us to have her mother meet Janey and to her camp, where Janey got to sit on a boat, as well as to an alpaca farm, and Janey got to run around outside a lot.  I put pictures on my Facebook page, and here is one of Janey on the rocks---I loved seeing her play on them, as that is what I did all summer long growing up.  But...it was tough.  Janey slept very, very poorly up there.  It was quiet, we had a nice bed in my parents' travel trailer, our own little place, she got plenty of exercise, but she didn't sleep.  And when she got overwhelmed, she screamed.

The sleep was so tough.  My parents watched Janey in the afternoons so I could have a nap, but nothing really makes up for a night with only 2 or 3 hours sleep.  I don't get to sleep quickly, especially when I am thinking I'm going to be awakened, so once I did go to bed, I lay there for a while, finally drifted off, and it would feel like a few moments rest and BAM---Janey was awake.  One night I tried waiting a while when she started crying to go to her, and she said in a very sad voice "I sprang to my feet to see what was the matter!" a quote from The Night Before Christmas and a pointed jab at me and what I was supposed to do when she woke up.  Generally, she was cheerful in the night, but not sleepy.  She walked around, recited things, poked me and just plain stayed up, usually from 2 am on.  My husband Tony and I trade off night duties at home, and Janey usually sleeps better than that.  She was in a place she wasn't used to, she didn't have Daddy around or familiar things to comfort her when she woke up---I can understand the not sleeping.  But I felt like a zombie in the daytime.

And the screaming...The screaming hasn't been as bad as it used to be most of this summer.  It's been a good summer.  And a lot of the time in Maine, Janey was fairly happy.  But when she broke down, it was badly.  At one point, when my parents were letting me nap and my father was taking a walk down their dirt road with Janey, she woke me up with her screaming, from quite a bit down the road and through the walls of the camper I was sleeping in.  I worried the neighbors, who don't know Janey, would think something horrible was going on.  My father did his level best with her, but when she is like that, it's almost impossible to calm her.  I went and got her and lay down with her, and finally, she calmed.  For a bit.  There were a few other incidents like this, always it seemed right at a time when I desperately wanted her to be happy, like when she met my friend's mother.

I'm glad I took the trip.  It was a big deal to me to be able to do it.  I have never taken Janey away from home for even one night on my own, and she has never stayed at anyone's house for more than a night.  Her having such success at camp gave me the courage to try it.  It was real life, not a camp where everything is geared people with special needs, and I need to keep that in mind.  She did the best she could, and we made it home in one piece, and she got to experience a lot of things she wouldn't have otherwise, and we both got time with my parents.  I'm going to catch up on my sleep the next few days, thanks to a rested Tony.  And school starts Thursday.  Or, as I should put it SCHOOL STARTS THURSDAY!!!!!

Dread at Vacation's End

Tony had a week's vacation, starting on the 4th of July.  He goes back to work tomorrow.  I am feeling dread at the thought.  It's been so good having him home.  Taking care of Janey is a two person job, often, because no one person can do it for long alone.  When she doesn't sleep, whoever stays up with her desperately needs to sleep the next day.  When she screams for hours, we need to tag team, because if one person alone cares for her, it becomes overwhelming in the extreme.  Even when she is happy and cheerful, she needs two sets of eyes, because if one person needs to do something like go to the bathroom or fix lunch, the other person needs to be watching Janey to make sure she doesn't try to get out the door, or try to eat some non-food item, or try to bite herself or her brothers or the cats or whatever.  Of course, sometimes we do have to care for Janey one on one, and we do it, because we have to.  But after having 10 days in a row of Tony home, I'm dreading the solo shift.

Luckily, Janey is going to summer school, so if she doesn't sleep, I can catch a nap once she goes to school.  Summer school got off to a very good start last week in most ways.  Janey cheered up to an amazing extent after her first day Monday.  She likes going to school---she needs that routine, that structure.  She stayed cheery and enthusiastic all week, until, like clockwork, Friday afternoon.  Then she started the screaming and biting again.

My dread is mixed with frustration at myself.  I feel like every year, I have less energy and drive.  I've been worn down.  As Janey gets older and tougher to handle, I get more easily discouraged.  Yesterday was a good example.  I was taking Freddy to a friend's house, with Janey in the car, and I tried to get myself to take her to a nearby splash park.  I just couldn't do it.  I couldn't make myself do it.  The last time we went there,  Janey was stared at constantly.  She was much bigger than the other kids, she was talking to herself, and occasionally she took a notion to go sit on the lap of another mother that caught her eye.  At one point, a little boy, after trying to engage her in play, used the "r" word about her.  Janey didn't hear, or if she did, didn't understand, but I did.  I told myself yesterday to ignore all that, to be tougher, to just make myself go anyway.  But then my mind started thinking about if Janey screamed there, if she tried to bite another child, if she ran away from me, and I just couldn't do it.

Lest I sound like a sad sack, there have been some nice moments with Janey lately, to be sure.  Yesterday she said "You want to read a book!" meaning she wanted me to read her a book.  She wasn't holding a particular book---she just wanted to be read to.  That made me very, very happy.  She is enjoying being read to so much more than ever before.  The smile on her face each day she got off the bus last week was a beautiful thing.  On Thursday, Tony and I went alone to a zoo we like, and had William get Janey off the bus, and his report on how she did was overwhelmingly positive.  When she is happy, everyone's happy.  When she's not happy, ain't nobody happy, as the saying goes.  So we continue our quest without end to figure out how to keep her happy.

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.

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.

Vacation week and a new Janey mood!

This is winter school vacation week here in New England.  The last few vacations have been very tough with Janey, so Tony took all of this week off, which is great.  Janey can't seem to deal with both not being in school and not having Daddy home.  This week has been---not bad. Janey hasn't cried much, or screamed much.  However, she has been very, very quiet.  More than we've ever seen before, she has had long periods of just standing still and looking at us, or toward us.  A few times, we were trying to locate her (something we do every minute or so if we aren't looking directly at he) and she has been right in the room with us, just extremely quiet and motionless.  She has also just seemed on edge.  At times, she has been singing thought a huge selection of songs, each in a scared sounding voice, something that you would think would be hard to do with jolly songs like "Jingle Bells", but she pulls it off.

Janey's mood might be partly because of a medical test I had to have on Tuesday.  The results so far were very encouraging, but the test was an ordeal and I have large bandages on my wrists and neck.  This seems to be bothering Janey a huge amount.  Usually, she doesn't notice things like that, but over and over, she has come up to me, stared at me, and then gently tried to take off one of the bandages.  We have to tell her no quickly, and she backs away wordlessly, looking spooked.  I have tried hard to talk to her about this, and tell her I am fine, and even let her watch me change the bandages so she doesn't imagine something awful is under them, but it doesn't seem to have helped.  We were all nervous before the test, and I was in a lot of pain after it, and she of course picks up on this, but doesn't understand it.  It must to her seem very scary---Mama looks different!  Mama cringes a little without meaning to when I get close (hoping she won't jump on me).  Everyone seems edgy!  It is so hard to see Janey having feelings like this, and not being able to know if she understands my explanations at all.

I'm thinking about how important familiarity is to Janey, and that ties into not wanting her to change schools.  Her world must be a frightening place, so often.  She has no idea why things change, when they do, or why people she expects to be there, to be constant and consistent, sometimes are not.  Even little changes, like me having bandages or not being able to do all I usually do, scare her a good deal.  And her reactions are not always what you would expect.  I think Janey often goes into a freeze mode.  When she just stands there, not doing anything, I think it's when she is so worried and nervous she can't even react.  It's like a startled animal in the wild.  She might look like she hasn't noticed the changes, but she has---she just has no idea how to react.  And when she does decide how to react, it might not be obvious to us that her scared tone or crying or frantic actions have to do with the changes, the confusion.  If the world is hard to understand, consistency seems like one the greatest gifts we can give Janey.

I will be very glad when school starts again, but this one time, not so much for me, selfishly, but for Janey.  She needs that structure, that predictable mix of home and school.  There is no vacation for her from autism.

Back to school, back to happier

Janey has been back in school for three days now, and she is far happier than during vacation.  The better mood actually did start before school started back up, so maybe school isn't all of it, but it certainly helps.  Her first day back, I got a report from her teacher that it was just about the best day she'd ever had---that she was cheerful, working hard, participating, smiling the whole day.  That was wonderful to hear.  She is sleeping better and on a more regular schedule, and she just seems more engaged.

So---what can I do with this?  Well, I know that year round school or something like school is essential.  Because I love to borrow trouble, I am already worried about the summer.  She can go to the summer program she went to for the last 3 years, but she wasn't at all happy there last summer, and I wasn't happy with it.  But other programs are hard to come by, and cost a huge amount often.  There are lots of special needs summer programs, but as I am learning as Janey gets older, there is special needs and then there is SPECIAL needs, and most programs can't handle Janey's level of needs.  I can try to make home more like school.  That isn't really my goal for Janey's life---I think it's good to have home be home and school be school, but I can structure things a little more at home.  I can try to figure out what aspects of school make Janey happy, and take those parts to use at home.

When Janey was in the worst of her screaming spell, around last Thursday, Freddy took over with Janey for an hour or so when I'd simply reached the end.  He somehow had the idea he'd like to work on academics with her.  I was skeptical.  I didn't think a little workbook time was the right thing for a girl that was hysterically screaming and crying.  But almost right away, when he sat her down with a preschool workbook, she calmed down.  She tried to do the work---tracing letters and circles.  She identified pictures we pointed out.  She seemed to welcome the distraction.  Later, Freddy hitched a computer to the TV and tried to work on typing letters with her a little.  She wasn't too into it, but again, she was calm.  The screaming seemed to break a little after that point.  It didn't disappear, but that hour with Freddy marked the beginning of the end of the horrible bad spell.

I'm not going to draw any major conclusions from all of this, but I am going to try to do a little more academics at home with Janey.  There is no reason why not to, if it she is calmed by it, and there is a lot of upside possible from it.  I'm going to also try to make myself structure days at home more.  I'm going to work on finding a good summer program, if possible.  I'm not under any delusions that she won't have another tough spell, though.  I know enough to know she most likely will.  It's such a relief when they are over, but every time she has one, the relief gets a little more tempered with reality.  We have only theories why they start, and why they stop.  We hang onto patterns and possible causes, but in truth, we don't get a lot about Janey.  This doesn't seem to change much with time.  But we'll catch our sleep and calm moments while we can, and build up our resources for the always uncertain future.

Respite Day

Janey went today to a respite program from 10-4, during which time they took the kids to the Children's Museum.  I was very, very nervous about sending Janey, but it appears the day went well.  I talked to Janey a lot about where she was going, and we had visited the respite house recently, so I think she did remember.  She woke up in a great mood, and was eager to go, and looked very excited when we got there.  We stayed about 20 minutes, to make sure she was settled and to talk to a few people there about her being a runner, and the arm biting.  Then we kissed her goodbye and took off.  When we picked her up at 4, she was still looking super happy, and we were told she had a great day, and only got upset and arm biting once in the van, and they put on a video and she was happy again.  She wouldn't eat her lunch, but she never eats much except at home.  So, overall I'd say the day was a success!

The respite house has Saturday programs 3 out of the 4 Saturdays in each month, but a lot of them are not ones I'd send Janey to, because I don't think she'd get much out of them or I don't feel comfortable with them.  For example, next week they are going to a water park.  I can't quite picture Janey at a water park---the risks if she ran off are just too much, and I am not a fan of water parks in general.  The chlorine in the water can be a huge trigger for asthma.  Janey doesn't have asthma, but Freddy does, and his worst attack was after a day at a water park.  He was in the hospital for 3 days.  I decided after that we won't be water parking again!  There's a vacation week camp too, for when summertime school ends, but a few of those days are boat tours, another thing I'm not sure I'm ready for Janey to do without me!  But I'll be thrilled if she can go to the program once every few months or so.  That's probably all we can really afford, and it will give her a fun day and us a little rest.

It was strange here without her!  We all realized she's the center of our lives.  It felt kind of empty without her, although I think we could get used to just a tiny bit more time with just the boys now and then!  But today, the boys had a big fight, which is not really like them, and we all were a little cranky.  And I got sick---a sudden weird sickness with a high fever.  The fever is less now, but it was bizarre. So I spend most of the day, and the evening, in bed.  I've read other people say that once they finally got a little break from a child with special needs, they really missed the child, and even though Janey was gone a shorter time than a school day, having the rest of us home made it feel odd.  Maybe part of that is we try very hard not to sound upset or even impassioned around Janey, as she gets upset if she thinks we are upset, even if we are not, just loud and emphatic!  So without her here, we let out some long held in tension.

I'm glad I tried the respite.  I know I'll do it again.  I have a few concerns, such as the staff seeming a little disorganized (although very sweet and good with the kids) and not being sure who was in charge, and there being no sign-in sheet, but the most important thing about respite is that they keep Janey safe and happy, and that seemed to be the case!

A Good Stretch

Janey is continuing her good stretch.  There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about.  She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class.  She said a set phrase (something like "Look!  The bunny has big ears!") for each page, but she said it in the sweetest way.  That was great.

What makes a stretch good like this?  And what makes a stretch bad?  If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good.  There's a few things I can guess at.  One is routine---vacations are bad, bad news, usually.  Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations.  I'm so glad she has summer school---before that, the summers were very tough.  Another factor, I'm coming to see, is weather.  Good weather and time outside are vital for Janey.  She needs that---the time to feel the fresh air, to have room to move.  And a third is how the rest of us are doing.  Janey picks up hugely on our emotions.  Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects.  If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood.  She is extremely sensitive to tones of voice especially.  She can understand them, if not the words.

Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it.  This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently.  Anything like that that we can do to give her some control over what she sees and hears seems to be very important.  Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants.  I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better.  When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.

Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times.  Life as Janey is probably a very frustrating thing to live, often.  She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level.  I can picture her wanting things she has no way on earth of explaining, and that would make me cry too.  It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.

A very tough week

When I say this was a very tough week, I am certainly not just talking about my own family.  Living in Boston, it's probably been the toughest week for almost everyone that they've had in a long time---the horrible Marathon bombing, the shootout last night, the shelter in place order today---yes, not a week any of us want to relive.  Most of all, of course, the families of those who have lost their lives, including the family of the little 8 year old boy who lived less than half a mile from Janey's school.  We didn't know him, but I am very sure that many people I know did.

On a personal level, it's been a very, very tough week with Janey too.  She was not happy all week.  I'm sure part of that has to do with our preoccupation at times with the news, and her ability to sense our mood was not normal.  It was vacation week, and she was home.  We didn't have a lot of plans for the week, and even less once all the events started to happen.  Janey spent huge parts of each day crying.  She wanted school, I am sure.  She was on a huge roll at school, and she seems to be in the middle of some kind of leap forward with thinking and talking, which is wonderful, but it makes for a hard time to be cooped inside.  At a few points when she was playing outside, she decided it was time to walk to get ice cream, which is down the street, and rushed toward the sidewalk.  Luckily, we have a gate on our driveway and no other way to the sidewalk, so she couldn't get far, but the gate isn't always closed, although it was those times.  That illustrates why I don't try taking her many places on my own, and my teenage boys are less and less inclined to want to head out for a fun day with their sister.  I can't tempt them with meals out or promises to buy something.  They get as tired as I do of the stares.  So when I'm on my own with Janey, I don't take her out much.  And today, when we could have (Tony was home, as his office was closed due to all going on), we weren't supposed to leave the house.

Janey has actually been happier today.  A lot of that is having Tony and me both around.  She doesn't like to not have at least one person paying close attention to her.  She gets that at school, and she wants it at home. She's quite chipper today with that kind of attention.  But if we let our focused attention stray just for a minute, she finds a way to get it back, it seems, or she just finds a way to entertain herself---squeezing out toothpaste, tossing things across the room, smashing on windows, checking if the fridge is unlocked and taking things out, pouring soda after shaking up the bottle, putting things in her mouth like paper or yarn....it goes on.  It seems like all week, it's either been the crying or the mischief.  It's hard to say what is more tiring.  I guess for me, it's the crying, but both are not easy.

I think also Janey is going through a growth spurt.  She is hungry around the clock, hugely hungry.  I remember both boys having a period of time like that when they were 8, and again about when they were 11.  It happened just before they grew a lot.  So that's not necessarily an autism thing, but it can be hard to keep up with her demands, as she doesn't much understand "Wait until lunch" or "You've had enough right now"  She just repeats her demands over and over and over "Do you want to get me some bacon?  Do you want ice cream?  Onions, please, onions!  Pizza right now!  I need some nuts!  You need some oatmeal!"  Pronouns reversed or not, it's endless.

Overall, a week I would just as soon forget forever, for so many reasons.  I am proud to live in Boston, which I can truly say is one of the best cities on Earth, but this particular week has been a painful one for Boston.  And one that has made me think often that no matter how tough parenting an autistic child might be, I am lucky to have my Janey and my boys.   Incredibly lucky.

A day of highs and lows

It's Patriots Day, Marathon Day.  The kids are home on vacation, and William was at Brandeis last night for an overnight.  He loved it more than he already did after the night there, and we bit the bullet and made it official, putting the deposit down to enroll him.  Aside from all the money fears (he got a great but not full scholarship, but loans should get us by!) and the bittersweet feeling of my baby boy being almost a college boy, it was a hugely happy moment for me.  We've had a journey with him, and he has reached this point through his own extremely hard work and determination.  I am so proud of him.

Janey wasn't enjoying the day at home.  She knows when the weekend is supposed to be over, somehow, and she wasn't happy it wasn't.  By afternoon she was crying most of the time, and I was tired, tired, tired.  It was feeling like an endless day that was going to start an endless week.  Finally I calmed her down enough to sneak onto Facebook, hoping to play some Scrabble.  And then I saw the many alarming status updates, and checked the news.  And the day took a dark turn.

We live within Boston city limits.  When the sun shines on the Hancock building, in Copley Square where the Marathon ends, you can look down to the end of our street and see it.  Although I'm certainly not a runner, the marathon is huge here.  I tuned in earlier in the day for a minute, to see the winners.  My mother grew up near the starting line and watched every year growing up.  Freddy takes the train every day to Back Bay on his way to school, within sight of where the explosions were.  I've entered the library right across from the explosion sight many, many times.  It feels surreal, horribly and scarily surreal, that this has all happened here.  When I was watching the endless coverage with the boys, and we heard people say they were standing with the people of Boston, we looked at each other and said "We ARE the people of Boston"  

Janey of course understands nothing of what happened, besides that she wasn't able to watch what she wanted on TV for a while.  I took her for a little walk to meet Tony coming home from work in the city, taking the train by all that had happened.  I grabbed him and hugged him, and Janey laughed at our odd behavior.  

I would never say I'm glad Janey can't understand things like terrorism.  But sometimes, there is comfort in knowing that no matter how hard autism makes her life, she won't be able to truly understand human evil.  She won't be like her brothers and father and myself, hearing and seeing one awful thing after another that has happened right here in our city and thinking of those who have lost life or limb.  She is spared that.  She knows sadness, of course, but I don't think she can understand evil.

I wish none of us had to try to understand evil.

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

Back to Janey

I had a 4 night getaway in Maine, thanks to my parents and my friend Julie. It was wonderful---very relaxing. I missed everyone, but they seemed to do well without me. Janey had been over her crying times for several days, and she stayed happy and slept pretty well. I told her I was going, and talked a lot about how I'd come back, but I never know what she understands. I talked to her on the phone, but I never get much response from that. Nor did I when I actually got back. I have to admit it's a little sad to me. Janey did not show any sign of any emotion when she saw me. She looked completely uninterested. I know that can be that she was overwhelmed and just shut down, but I think I know that look, and it wasn't the one. Either I had prepared her very well and Tony and the boys had taken very good care of her, which was the case, or she really wasn't too torn up about me being gone. Which of course I wouldn't want her to be, but I'm human. It would have felt good to have her run and hug me and get excited. And she DOES do that with some people. She's done it at school quite a few times when seeing teachers or others she hasn't seen in a while, especially I was told when Donna, her PT, came back after being out for a while. She gets thrilled every time she sees my friend Maryellen. But for me, not so much. And I am fine with that. I guess that's the goal of attachment parenting, which isn't quite my philosophy, but which I agree with a lot of. She is securely attached and she knows I'm coming back. I'm rambling a bit.

Being away sometimes gives me a fresh perspective on Janey. This time, it make me think over again about how limited her ability to communicate is, and how I think a lot of her frustration is when she can't figure out how to ask for what she really wants. She asks for the closest equivalent she can say, and then isn't happy when she gets it, because it's not really what she wants. For example, she will often say "I want go in the car" I am pretty sure in her mind she has a specific destination, but she can't think of the words to ask. When she said that today, I tried listing everyplace I could think of she might want to go, and even that didn't work. She finally said "I want go in the car TO MAMA'S HOUSE" and when I said "We are already here!" she got upset. I was wondering (hoping, maybe) it was a roundabout way of telling me that when I was gone, she had wanted to go to where I was. But she's given that answer to where she wants to go a lot of times in the past, and I think more it means she wants to go in the car that is AT Mama's house, to go elsewhere. She also often says lately "I want water" which can mean anything from a bath to a drink to the wading pool to the beach to playing in the sink to washing her hands.

Anyway, in returning, I felt extremely grateful to Tony. He kept Janey happy, cleaned the house some, cleaned my car, had a special meal ready for me....I am very lucky, for friends and family that give me a chance to recharge and for a family I love to come home to.

Vacation week thoughts

This is the first day of the spring vacation. Optimist that I think I am deep inside, I start most vacations feeling fairly hopeful about them. It's good to have a break in the routine, and especially, for the boys to have a break from the intense world of high school. But mixed with that feeling is the dread I have of facing more than a week of keeping Janey happy and entertained.

The hard part is dual, really. Just keeping Janey happy in general is often a challenge. When she gets into a down period, she can cry for days on end, and it can be incredibly tough, both for her and for us. We've had a few vacations where that happened, but overall, I would say it happens less often than it used to. Keeping her entertained is the harder part. And that's where the dual problem comes in. With "regular" kids, there are endless things you can do to keep them happy during vacation week. You can pick up any parent's paper and see them---camps, children's museums, special vacation week programs at other museums, family restaurants, lessons, outdoor hikes---and then there's just the playdates and playing with friends that "regular" kids have. With Janey, none of that works. We get a nice little booklet here in the city called "Summer Stuff Jr." that lists summer and vacation programs for kids. There is not a one in there that could handle Janey. I went to a camp fair one time, and not one camp there was equipped to handle lower-functioning autistic kids. And I can't blame them for that. It's a hugely tough job. But it's the flip side of inclusion. School is inclusive, the world is not. If those camps excluded people based on color or religion or nationality, it would be an outrage we'd all condemn. But excluding kids based on disability----well, even I can't get totally outraged about that. We live in the real work.

And even with camps excluded, there is so little else we can do. Janey can't handle the overload of a museum or the mall. Eating out---that's something we attempt about once a year, when Janey is in an exceptionally good mood and we are all together. Even then, we often have to bail out. Playdates---well, that doesn't happen. All the kids like Janey, but no-one is going to invite her over for a day. It would be not a playdate, but a huge respite job for the parent. Even if I went with her, there would be no relaxing with coffee while the kids played.

And so we stay home, mostly. The boys like that. They can entertain themselves for years at home in today's connected world. But with Janey, the days get long. We play some iPad, watch some videos, play in the back yard, read books. None of those hold her interest for long. And she's left bored, and I am left tired.

What am I saying here, besides a rambling complaint? Well, my dream would be that some of the money given for autism would go for vacation and holiday week activities. Maybe a bowling alley could be taken over so autistic kids could have fun in an accepting environment. Maybe a museum could have an autism day, where no-one would mind the flapping and screaming and crying and odd behaviors. Maybe the empty schools could be used for a camp. There are a lot of families like ours. I dream of something like a "Summer Stuff Junior for EVERYONE".