Summertime Blues

 It's been a rough start to the summer with Janey.  We are seeing behaviors we haven't seen for years---long days of screaming, lots of arm biting which comes close to breaking her skin, crying for hours.  It's not every minute of every day, and there have been a few better days mixed in, but overall, it's certainly been a tough time.  

We really have no idea what is causing this unhappiness.  Some of it is probably just the change in routine that the end of the regular school year brings, but it hasn't been this extreme other years.  Janey had quite a good year of school, overall, and most of the time enjoyed the new after school program.  I imagine it was hard to have it all be over for the summer.  We tried hard to make the weeks before summer school fun for her.  We did a trip to Maine to stay in what she calls a "hotel house"---usually something that makes her very happy, but this trip was mixed to say the least.  It was very, very hot in Maine, and we mostly had to stay in our air conditioned room.  Janey liked the unlimited showers in a nice big hotel shower, but off and on, she screamed and cried loudly.  

During one of these screaming sessions at the hotel, as we tried everything we could to calm her down, I had a horrible flashback to the time we were in Children's Hospital waiting for a placement at a psychiatric facility, when Janey was 10.  It felt suddenly so much the same---being in a room we really couldn't leave (this time due to 100 degree heat), having to keep Janey quiet (this time because we didn't want to disturb other guests or get that fun call we've gotten a few times from the front desk asking if everything is okay), not being at home where we have more resources to help her---it was awful.  I felt like I was in despair, a feeling I haven't had because of a situation with Janey for a long time.  

The picture shows one of Janey's happy moments at the hotel, of which there were a few, but moments like that lately seem to change on a dime.  

Now Janey is in summer school, which is never her favorite part of the school year.  She goes willingly, as she always does for school, but most days she is getting off the school bus and breaking down.  We always consider just not sending her to summer school, but....

The other big issue is the one that isn't new---Janey's sleepless nights.  The past week, there were 3 nights out of seven that she literally didn't sleep at all.  Needless to say, Tony and I didn't get much sleep either.  After a night like that, we are left feeling barely human.  Any respite at all is so desperately needed that any thoughts of not doing summer school are put aside.  We put her on the bus and collapse.  She, meanwhile, usually seems to feel just fine without any sleep.  Sometimes her days after not sleeping are her better days.  We very much need to try to figure out why her sleep is so variable.  We do know that genetic testing showed she has the genes for a very rare sleep disorder---one that only about 100 families in the world have---but Tony also has the gene, and he doesn't have the sleep issues she does.  It's a rare enough disorder that there isn't much information on it out there, and we have been putting off joining a study about it because, well, we are just kind of overwhelmed and not really ready for all kinds of medical tests that would involve, but we probably need to join the study, at least to try to understand what's going on more.

On the uncommon days lately that Janey is happy, we have seen something we often see when she's been having a very tough time---improved talking.  It's strange how that seems to follow or be interspersed with tough times.  She's asking for specific songs she wants to hear by name, she's using a little bit longer sentences, and she's doing something new.  When she asks me something like "want to go for a car ride?" and I say "you need to check with Daddy about that" (I don't drive anymore), she will say something like "I will ask Daddy 'Daddy, want to go for a car ride?'"  She rehearses what she will say.  She's done this 5 or 6 times, and it really blows me away.  It's like a little glimpse into her thinking, something we so rarely get.

I hope these tougher times are just an blip, that the easier times we've had for a while now will come back.  Like the flashback in the hotel room, it's so easy to fall right back into the old feelings of hopelessness when faced with screaming and crying.  And it's so hard to have the energy to do all we can to keep her happy when we don't get sleep.  Hopefully, as this hot and restless summer bears on, things will get easier, for us but most of all for Janey.  

Summer update

In no particular order, some updates from our summer so far!

The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has.  It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes.  The interesting thing is that the testing shows she inherited it from Tony.  Neither of them seem to have ever had seizures, during sleep or otherwise.  I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will.  It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it.  But for now, it raises a lot more questions than it answers.

Summer school was...mixed.  The first 3 weeks were great.  Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive.  But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood.  We started getting calls from school every day.  If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong.  I fell into a very low mood for a few days there, remembering all the toughest times.  Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus.  But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. 

At home, Janey loves to do three things most.  She likes car rides, showers and eating.  We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit).  When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time.  It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more.  I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.

More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone.  And that is one thing we can't really give her, not fully.  When she gets home from a car ride, she likes to play in our long driveway.   And that's fine---as long as we are watching her. We live on a busy street in the city.   She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house.  She says "You want to take a shower?", hoping to tempt us inside with what she herself would love.  She sometimes is even more direct, saying "Want to GO AWAY???"  It makes me so sad that she can't have that little thing she wants, to just be alone and play.  We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter.  When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a  backward eye on her.  I wish she was able to have the freedom she clearly wants.  But I don't see a solution here.

Janey will be 19 in a few days.  It's hard to believe.  In so many ways, she's a delight to us.  Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy.  Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food.  When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it.  Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there.  Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind.  There is something about Janey that brings that out, in so many people in so many ways.  It's what gets us through it all.  It's what gives us hope on tough days.  It's been a long, strange 19 years, but boy, does she keep life interesting.

Hot and bothered

 The last three weeks have been the hottest ever recorded in Boston, and it's been miserable.  Hot weather is miserable everywhere (or it is to me) but Boston's hot weather feels like a special kind of awful---humid air but no rain and a feeling of there not being a full breath to take outside.  I hate it.  And so, take that into consideration when I rant here.

Janey had a tough day of school today.  We got a call from her summer school teacher.  He seems great, and I really liked the way he told me about her day---emphasizing the good, outlining all she was saying and why she was getting upset.  She wanted to go home, and failing that, she wanted to go to the dance studio, and if she couldn't do that, she wanted to go swimming.  It was too early to go home, the dance studio was closed for the summer and the pool for some reason is not available for special needs summer school students.  And so she was angry.  When her summer ABA therapist tried to get her to do work, she pulled her hair and then bit her (not badly, but a bite is never good).  She later also tried to bite her teacher.

It's not unheard of for Janey to pull hair or bite, but it's quite unusual in the last few years.  I think she was feeling what we've all been feeling---just fed up.  She's tired of the heat keeping us from doing anything much fun.  She is tired of schoolwork.  She wants to do the things she wants to do---dance and swim and go for car rides.  And she expressed what she wanted, with words, as we always ask her to, and it didn't make any difference.  She lashed out.  It is not acceptable for her to pull hair or bite, or to hit as she did this evening with me while I was trying to talk to her about the biting and hair pulling, but I can somewhat understand why she did.

I was feeling in a mood today before we got the call from the teacher.  I read an article in the Boston Globe about a new law that allows young adults with disabilities access to colleges in Massachusetts.  That is great---I am truly happy for the people that will be able to take advantage of that program.  But reading about it, it soon became apparent that Janey won't be one of those people.  The article acknowledged that---it said the state's total population of college aged students with serious intellectual disabilities and autism is around 3500 to 4000, but that "a smaller number are likely to seek college access under the new law". Then it said that those who do will "improve their chance of employment" and that "Individual campuses will determine their own criteria for acceptance"  There were quotes from students who accessed college under past pilot versions of this program, and while I was very, very happy for those students, the language level in those quotes made it clear that Janey was not going to be one of those students.

And none of this is new.  As I'm seeing expressed more and more, thanks to groups like the National Council on Severe Autism, people like Janey are left out not only from the mainstream but for a huge percentage of programs expressly for people with disabilities and more specifically, people with autism.  We all know the key words and phrases "Must be able to follow directions"  "Must be able to function with a teacher/child ratio of 4/1" "Must be able to read music" "Must not have any self-injurious behaviors" "Must be completely independent with toileting".  They might as well be saying "Must not be THAT kind of autism.  Must be the "good, quirky, interesting" kind of autism, not the "bad" kind.  They don't say that.   I am sure most people don't even think that.  The truth is, I think a lot of people, even in the disability world, are not totally aware people like Janey exist.

I am weary.  I don't know what the future will hold.  Janey turns 18 a week from tomorrow.  Tomorrow, we will be keeping her home from school---the teacher did not ask us to, but I know how her angry and lashing out moods can go, and we need to break the cycle.  Because there is no plan B.  We will never again take her to an emergency room.  There is no respite.  There is no residential home waiting for her as an adult.  Hopefully, at age 22, we will find her a decent day program, once she ages out of the public schools.  She won't be going to college, special new law notwithstanding.  

I think parents of children like Janey are starting to speak out, and that is so important.  Parents like us love our kids so much that we can be inclined to not talk about how hard it is.  But if we don't, if we let Janey and all the people like Janey be without a voice, they will be left out.  Nothing will change.  And on a night like this one, where I am tired and hot and weary and discouraged, I can say that just can't happen.

Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

The summer so far

 Janey started summer school today.  I'd like to tell you how it went, but I really have no idea.  She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face.  There was no note in her backpack.  I don't know who her teacher is.  I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all.  If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think.  Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.

The summer up to this point?  Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer.  We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain.  We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else.  We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos.  She has watched "Toy Store 4" probably 100 times.  She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.

Sleep has been a problem.  As Janey gets older, it's one area that is more of a problem than it used to be.  Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now.  There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row.  To us, it seems impossible.  I truly just don't know how she can do it, without napping during the days.  Other times, less commonly, she'll sleep most of the day and most of the night.  Her sleep just doesn't seem to have the pattern that most everyone else's sleep has.  And that would be fine, except we really can't sleep when she isn't sleeping.  We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her.  We are thankful she's isn't in any way an eloper.  Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice.  So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)

Janey did have a filling done under general anesthesia last week, which went very well.  She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home.  I feel guilty over this boredom, but it is so very hard to get her interested in anything new.  I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway.  But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested.  Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school.  But still, I feel a huge amount of guilt over her limited range of entertainment.  I know I've written about this before, but it's on my mind so much.

Janey will be 17 next month.  That shakes me up.  When I was 17, I left for college.  17 was the start of my adult life.  For Janey, 17 will probably be much like 16, or 15, or 5.  Does that matter to her?  Is there any way I can find out?  Is Janey happy with her life?  Does she think about what her life is, what she wishes it was, what it can or can't be?  Is it enough that most of the time now, Janey is fairly content, or is there more that we should do?  Does she long for more?  There are so many things I don't know about Janey, although our lives are intertwined so closely.  How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things.  Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful.  I hope I can do even in a small part what she deserves.

The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus

Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)

Reflecting on progress at the Whole Foods

At times, progress with Janey can feel glacially slow.  It can stop for long periods, or even go backwards.  However, yesterday morning during a trip to Whole Foods, I realized that Janey has made a lot of progress in the past years, and even just over this summer.

It started with the car ride, and the music in the car.  Earlier this summer, we were going crazy with Janey's constant need to have us switch songs.  We would hear about 10 seconds of a song, and she'd say "Music, please!  Music!" which meant she wanted us to go to the next song.  We decided to gradually stand our ground on a few songs here and there, just calmly saying "I really like this one!  I'm going to listen to it!"  Then after that song was done, we'd switch as much as she wanted to for a while more.  It was surprising how quickly she got used to listening to songs that weren't her total choice, and actually liking some of them.  On this ride, I played a song list of songs from the early 80s, my high school era, and Janey seems to like that era too.  She rocked out a lot and I was very happy!

Janey at the Whole Foods

At the Whole Foods, I realized as we went in that I really don't hold Janey's hand in stores any more.  She's never been much of an eloping threat.  She doesn't run away from us much.  I still always hold her hands on the sidewalk or in parking lots, as she isn't as aware of car danger as I wish she was, but in stores, she does extremely well just walking on her own.  It makes it easier for me, and more fun for her, I think.

I told Janey before we went in that she could pick out some salami.  That's her biggest treat, the extremely expensive salami rack at the Whole Paycheck.  She picked out some very thinly sliced kind that I think if you stuffed it all in, you could eat in one bite, at a cost much closer to ten dollars than five, but a promise is a promise.  And I realized she totally understands now that you have to pay and get out of the store before you eat.  We used to wait until the very end of the trip to get her treat, and then if Tony and I were both shopping, we'd buy hers separately and go right out for her to eat it, but she happily this time dropped it in the cart and didn't mention it while we shopped.

As we walked the aisles, Janey started singing "Oh Susanna"  I love to hear her sing, and she wasn't at all loud, just tuneful.  And we got looks, but not really stares.  Or maybe I'm made progress too, and I don't see things as stares.  We got a lot of smiles, and I felt proud of Janey.  I'm almost always proud of Janey inside, but this was a different kind of proud, a feeling like "Sure, she's different, but she's also so cool, so pretty, so interesting, just a neat kid"  I was on a bit of a high, just thinking how wonderful it was to be walking the store with so few worries about Janey.

We checked out, Janey still being patient, went out to the car, and I asked her if she wanted the salami in the car.  She said no, so I put it with the rest in the trunk.  On the way home, she asked for salami about three times, but each time, when I reminded her we'd have it at home and that it was in the trunk, she accepted the answer calmly.  We got home, and she ate her salami in about two seconds flat.

Janey's reserved look, like at the Five Guys

Today, Freddy and I took Janey to Five Guys for lunch.  Janey looked nervous as we got there, and said as we got out "Whole Foods?"  I said today we were going to a different place, and she didn't fight it.  She said "no" at first as we were at the door, but we coaxed her in, saying "You can have peanuts and french fries!"  She wasn't exactly thrilled to be there, no big smiles or anything, but she sat and eat and behaved.  Thinking about that, it's almost a bigger deal than the Whole Foods, that she would do that well at something she didn't prefer.  She did a whooping kind of scream a few times at the end, not her angry scream but more like a "I just feel like making noise" scream, and we reminded her to be quieter, and she listened and did.  I again noticed looks, but didn't feel they were stares.

It's been a long summer.  And a hugely hot and humid summer, a lot of the time.  But for the first summer in a while without summer school, seeing Janey the last few days, I do think there's been progress, behavioral progress especially.  It's a wonderful feeling, seeing that.

School starts two weeks from today.  I'm still keeping close tabs on that special day.  But I don't feel desperate or close to breaking, as I've felt some summers.  My Janey is growing up, and our journey together, to mutual understanding and compromise and acceptance, is marching on along with the years.

Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Little Things Add Up To Big Stress

The last few weeks have been stressful.  Actually, based on how I've felt the last few days, they have felt extremely stressful.  There is nothing "big bad" going on, but lots of small stress causers, and they pile up until I feel like I do now.

I think that's the case with a lot of parents like myself.  We live with a base level of stress, most all the time.  When small things get added on, and on and on, it doesn't take much to put us over the top.  The funny thing is, when things are REALLY bad, something kicks in---adrenaline or a hidden reserve or something.  It's still very hard, but more a sadness or anger or worried hard.  Stress, for me anyway, is like the workaday version of those.  It can be just as tough to deal with, or tougher, without being as headline worthy.

What is stressing me, you ask?  Or even if you don't, I'll tell you.  Let's start with the last 10 minutes, after Janey got off the bus but before she started watching a Christmas Madagascar special and kicked me out of the room....

 I sit out in the 95 degree heat, waiting for the afternoon bus home from summer school.  It comes at highly various times, due to highly various Boston traffic, so I wind up often waiting for it a while.  When it does come, Janey gets off the bus and within a minute, turns off both air conditioners.  She hates AC.  It is sticky hot in a way that Boston sometimes gets, an unbearable way.  I suggest she uses the potty instead of the bed.  This displeases her, and she starts screaming.  I take a deep breath and try to calm down, and offer her some chips if she will try the potty.  She calls my bluff by going to where I've hidden the chips, easily finding them and opening both bags.  And then rejecting them.  As I go to clip one bag shut, she somehow hides the other open bag.  As I search for it, she screams hysterically as I have not instantly put on the TV show she asked for at least 10 seconds before.  I stop the hunt, find the show, clip the chips and sit down to write this.

Now an update, 15 minutes later.  After I wrote what comes before this point, Janey changed her mind about a show.  I went over to put on the new show she asked for.  But that was not really the show she wanted.  I was supposed to know that, somehow.  So she screamed a while longer.  I figured out the right show, and she pushed me out of the room again.  I sat down to write and have some of my coffee.  Janey came over to turn off the AC I'd turned back on.  I turned to talk to her, and knocked over all my coffee.  Naturally, it didn't just go on the floor, but instead on Janey's special pillowcase, the one non-human object in the world she cares for, which she obsessively takes off the pillow and puts down various places.  I tried to sneak the pillowcase into the hamper, but she noticed and got extremely upset.  Somehow it having coffee on it made it necessary in her eyes for me to make more coffee.  She pushed me over to the coffeemaker and screamed until I started some.  I started it, and then snuck back over here.

None of this is huge stuff, but in the half hour since she's been home, it's a lot.  And that has been this week.  Getting on the bus in the morning is the worst.  The bus comes to get her any time in a 30 minute range.  Today it was there at the earliest time, yesterday at the latest time.  If we aren't out there when it comes, they do honk, but they have a lot of kids to pick up and can't wait long.  So...we have to go out to wait for it at the earliest time.  Janey tolerates 5 minutes or so of waiting, but then she wants back in the house.  And screams because she can't go back in.  If the boys are available, I have them stay inside with her, but even then, if they look away for a minute, she takes off her shoes, and otherwise makes herself unpresentable for school.  Generally, they aren't available (Freddy works until late and William is currently visiting my parents), so that isn't even an option.  I just have to figure out how to keep Janey from freaking out in the heat while we wait.  Again, not a huge thing, but it's making me a little crazy.

Oh, shut up, Perfect Woman!

Sometimes, I am up to dealing with stress.  Lately, I'm not.  It's the heat, partly, and my health partly.  I don't get into health details much here, not to be mysterious, just not to overshare, but there are currently four different diagnoses I carry, each of which has among the top 2 symptoms "extreme fatigue"  And I am feeling that extreme fatigue lately.  I am feeling every second of my 51 years.  Having a child that needs full time care, who is not capable of self-care and will not ever be, most likely...it's tiring.  And stressful.

The woman in the picture is how I feel like I'm supposed to be.  It's my ideal, one that reality doesn't modify much.  I should be calm always, working on solutions instead of complaining, feeling grateful Janey goes to summer school instead of wishing it was for longer, cheerfully doing the housework while she is there instead of grudgingly doing it and wishing I was just sleeping instead...yeah.  I should be making up a nice chocolate cake instead of writing right now.

This is mainly just a rant. There aren't solutions.  And I'm certainly not alone.  I know you, out there in the wider autism nation, are right here with me in Stress Village.  And most importantly, I know Janey is stressed too.  And like me, she is doing the best she can.  So, we'll keep on keeping on.  55 minutes until Tony gets home.  Not that I'm counting.

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

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 school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

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.