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.

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.

A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.

Another sleepless night, through various filters...

The facts---Janey again had a sleepless night.  She was up from 11 pm to 5 am.  I'm a little slaphappy.  Here's a few takes on the night....

The completely supportive of my autistic daughter take---

Janey is communicating to me that she has decided to be nocturnal.  I celebrate and support her in this choice!  We will rearrange our schedules to accommodate her.  Tony will probably have to quit his job, and I'll sleep all day and stay up all night.  She also has indicated by putting on her shoes in the night and trying to unlock the doors to outside that she wants to go someplace during her wakeful nights.  We will put all our resources into figuring out where it is she desires to go, and will of course take her there.  It's wonderful to have her communicating all this to us!

The completely self-centered mother take---

I can't take this much longer!  Why is Janey doing this to me?  Why am I being tortured?  I have to find a way to make her sleep so I don't have to go through this any more!  And now, I can't even close my eyes for a second as she is constantly trying to "elope" out the door?  What fresh hell is this?

The scientific approach---

I am going to analyze the last few days and attempt to form a theory of Janey's sleeplessness.  Is she consuming something with caffeine?  Has her evening routine been disrupted?  Could she be experiencing pre-puberty hormonal changes?  I will try changing a few variables and observe the results.  With careful work, we should have this figured in a year or two.

The sleep-addled mind approach---

Wahhh?  Awake again?  Janey, please go back to sleep.  We aren't eating right now.  What?  What's going on?  Janey, take off your shoes.  Stop trying to open the door.  Tony, why don't you go upstairs to sleep so only one of us has to stay awake.  (3 hours later)  William, please wake up and go get your father.  I can't stay awake any longer and I can't leave Janey for a second.  Oh, hi, Tony.  Thanks for taking over....It's a big...zzzzzzzzzzzzzzzzzz.

The tough love approach---

Janey, you are going to get in that bed right now and close your eyes and sleep.  I'm not putting up with any more of this foolishness.  You aren't eating anything, you aren't watching videos, you aren't listening to any music.  You are SLEEPING!  Don't you dare get off that bed!  Don't you dare try to open that door!  You get back in bed!  (inner despair on realizing that Janey could care less if I sound angry and firm, because she doesn't care about pleasing me and knows there really isn't any punishment that works for her, then tiredness takes over and I go right back to the non-working rant)  You darn well better listen to me, young lady!

The hybrid approach---

Take a little of each above.  Mix them together in random form.  Hope against hope something works.  Realize nothing is working.  Wish that there was some magical new way to handle this.  Realize there isn't.  Spend the day in a half-awake daze.  Have hope tonight will be better, as hope springs eternal.

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.

The kindness of kids

The other day, someone asked me if Janey gets teased at school.  I was actually surprised at the question---thinking "Of course she doesn't!"  But I realized that back in the day, when I went to school, or at many schools today, I bet she would be.  She cries, she yells, she can't talk much, she waves her arms around strangely, she sings random songs, she wears pullups...plenty of teasing fodder there.  And at some point in her life, she probably will be teased, although thankfully (or not) she won't understand what is happening.  But at her school, the whole culture is one that would abhor teasing.

I saw a beautiful example of inclusion at work this morning.  We got to school a little early, which I love to do now and then, just to get to see Janey with other kids and to have a minute to talk with people.  We were outside, waiting for the bell to ring, and Janey ran away from me a bit.  I went to go get her, but before I did, two of the boys in her class, who were previously heavily involved in a game of tag, ran after her and took her hand and brought her back.  They did it without being asked, without making a big deal of it, without interrupting their game for more than a minute.  They did it because it came naturally to do it.  And it made me almost cry.  They are learning far more at school than academics.  They are learning that we are indeed our brother's (and our sister's) keepers.  They are learning to care for those that can't care for themselves.  They are learning to be good citizens, to be good parents some day, to be just plain good people.

And does all this caring for other come at a cost academically?  No.  In a word, no.  Janey's school, the Henderson Inclusion School, was the top elementary school in Boston last year when judged by test scores. The inclusion HELPS academically.  Part of this is because each classroom has two teachers, and usually an aide or two, which is possible because of the kids with special needs.  The funds that would otherwise pay for separate classrooms or schools for them allow for staff that help ALL the kids.  But I think it's more than that.  I think an atmosphere of love and understanding and caring is one where it's far easier to learn than it is in a atmosphere of competitiveness, self-centeredness and "let's not let the weird special needs kids disrupt our budding geniuses"  type feeling.

I say this not just as a parent of a child with special needs, but a parent of two other children that went to the same school---one with no special needs, one with mild special needs that did not affect his academics.  They are both fine students, and more importantly to me, they both understand that there is more to life than that.

I know inclusion isn't perfect.  I am aware of its limitations.  I know there are cases where it just doesn't work, and I know in some ways Janey might achieve more in a classroom with only other autistic kids.  But I say, only half tongue in cheek, why should I be so selfish as to deny the "normal" kids in her class the chance to get to know her?

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.

What to do, what to do...

I mean the title in two ways. First, summer school will be over Friday. I need to keep Janey busy and out of trouble for about a month until school starts. Literally, I need to figure out what to do with her, how to keep her happy and give her a good summer while also staying sane and keeping her safe. The options are fairly limited, and part of that is the other "what to do"---how Janey has been stepping up her game in terms of being naughty. I had a good talk with her great summer school teacher and great ABA specialist this morning. I told them about my tough night with Janey (more on that later) and they told me about some of her antics at school. The big one is the playground there. They sometimes go to a bigger playground down the street, but sometimes to the smaller school one. Janey likes the bigger one, and when they go to the smaller one, she is constantly on alert for ways to try to sneak out and go to the bigger one. The other day, she was watching the gate, and waited until it was opened by a teacher, looked around and saw that the figures of authority were across the playground, and made a run for it. She didn't make it, as they, like us, are always, always on alert for Janey, but they noticed how she is getting better at planning and more determined to get her way.

At home, it's a battle without end to keep her from destroying the house. The worst time for me is the time between when we get home from school and when Tony gets home, especially days the boys aren't here. That's about 2 hours, from 3-5. Last night, it felt like 200 hours or 2000. Janey had several goals. She wanted to get the Febreeze down from the top of the fridge and spray it around, she wanted to have some pepperoni, she wanted to run water in the bathroom sink until it overflowed, she wanted to throw crackers on the ground. Literally every time I was more than a few feet from her, she did something toward her goals---pushed a chair over to try to climb and get the Febreeze, worked on figuring out how to open our new fridge belt to look for pepperoni (which we were out of), run to the bathroom and turn on the water full blast, ask me for crackers, promise to eat them nicely, then toss them everywhere, and when told to pick them up, pretend to pick them up while actually stomping on all of them. I was at my wit's end.

And I truly don't know what to do to stop all this. I go down my list of ideas. Time out is useless, although I still try it. Yelling does less than no good. I try to "identify the antecedent" which is the behavioral approach, and it's pretty easy to identify---she wants what she wants. It's often a sensory thing, and I try hard to give her alternatives. The house is full of sensory toys, at one point yesterday I gave her a bath to let her play with water, she is always welcome to play outside in the wading pool, we have spray bottles with water I let her use in the kitchen or bathroom---but she doesn't accept substitutes. She doesn't care if I don't want her doing what she is doing. That makes little to no difference to her.

And taking her places, like playgrounds or splash parks, is terrifying. She does not stay with me. She runs, and I am increasingly unable to run as fast as she can. I have asthma, and I am 46 and not in Olympic shape. She is almost 8 and very, very strong and athletic. I can't pick her up any more.

I feel like I'm writing this post too often. But it's all that's on my mind lately. I do hope this stage passes. Meanwhile, I have a month to fill up. Somehow.

House of Cards

The last few days have reminded me that even when things seem to be going smoothly with Janey, it's all a house of cards. Monday, it felt like the start of a week where everything was falling into place. Janey went to summertime school, Freddy and William to summer programs they are in. I got a lot done, paid bills, went to the library, did laundry. The only issue was a slight pain I was feeling in my right upper leg. However, by evening, that pain was not slight, but horrible---very, very severe pain. I think I pulled a muscle when a pile of library books started to fall and I righted them by twisting around, while holding Janey's hand and her backpack and my pocketbook, taking her to the car in the morning. I couldn't sleep last night, despite everything I tried for the pain, and this morning it was obvious there was no way I could drive Janey to school. That left a problem. I could of course keep her home, but that would not let me keep my leg up. There is no sitting by relaxing when caring for Janey. You have to be ready to jump up constantly. The boys had their own places to be. And so Tony needed to stay home. It's not easy for him to miss work at his current job, but there was really no other alternative.

My leg is already feeling better, thanks to rest and ice and heat all day. But I kept reflecting on how easily it all falls apart. Of course, that's not unique to a family with an autistic child, but I do think it makes it harder. If Janey were a "normal" 7 year old, I could have kept her home and probably cared for my leg too. Or I could have called a friend to see if she could go to their house, or they could drive her. But with Janey, something like that is not a last minute thing. There are few people that can watch her, and even for those who can, they need lead time, instructions. They need to be able to help dress her, they need to know what she is prone to doing, they need to understand the huge need for handholding and constant vigilance. I can't call someone on 10 minutes notice, I couldn't take care of her myself. So it's Tony. But what if Tony was away? What if both of us got hurt, or sick? What if Tony simply couldn't take a day off? What if my leg was still bad tonight, and we needed help all week?

We'd work it out, someone. The boys would help, family would help, friends would help. But it would be hard for everyone, and more than I want to ask of people, and more than they could do for an extended time. It's truly a house of cards, with a breeze or a careless hand or a moment of not paying attention causing it all to potentially fall apart. It's scary.

On being noticed, or not

I read this article yesterday, and parts of it felt familiar to me, especially the eloping part. I could picture Janey at a carnival, just randomly running away from me. I would never be able to relax and enjoy the atmosphere.

What most struck me, though, was the differences between how Janey is treated and how the young boy in the article is treated. I never feel Janey is ignored or seems invisible, at school or in general in the community. Sometimes she's noticed more than I wish she was, as she is making odd noises or acting in other unusual ways, but regardless, she isn't ignored. I was reflecting on why that might be the case, and came up with a few reasons.

One is her exceptional school. It's an inclusion school in a true sense. Janey is part of her class and the school. She is one of the students. This is demonstrated in a million big and small ways. I was reminded of this the other day, when I finally put a name with a face of the only boy in the class Janey talks about by name all the time. I was telling his grandfather about how much Janey loves him, and the little boy said "Janey repeats what the teachers say all the time" I held my breath a little to see what the boy's take on this was, and then he said "They say that means she's listening!" I felt so, so happy. The teachers had found a way to put a positive spin on echolalia, and to make it a trait that first graders are supposed to have! Another example of inclusion---her special ed teacher telling me about a day when Janey was dawdling at her work, which was doing a puzzle. I can just picture it---when Janey knows she has to do something she doesn't want to do, she can be incredibly slow! Then it was time to line up for recess, and Janey jumped up to line up, but the teacher sat her back down, along with other kids who hadn't finished their work, and told her she needed to do the puzzle first. She worked fast then! I loved that---she was held to the same standards as the other kids. The work was modified, the standards weren't. Nothing would set a kid apart like it seeming like they get special treatment!

Another reason Janey doesn't get ignored is probably just luck. She is a girl, when most kids with autism are boys. She stands out in that way. She also looks "regular". You would not know by looking at her that she is autistic, but once you see her in action, it's pretty obvious. That interests people, and they notice her. I don't like staring, but I don't mind attention to her. It gives me a chance to educate people a little. More and more, I tell people "she is autistic" I feel like that little moment of education is important. It puts a face to the news items on autism.

The other reason is probably just Janey. I think often about how autism isn't all of her. Her natural personality is a bit extroverted, or at least non-self-conscious. To my eternal astonishment, I have raised three extroverts, and three kids not afraid to perform, to dance, to sing, to stand out. I am the kind that usually strives to not be noticed, and they are not like that.

It scares me a little, Janey not being ignored. It's outside my comfort zone. But it's how she is, for better or worse, and it's something I hope I can make a positive trait.

Hard to read --- lost to wandering

I happened upon this article the other day, and despite trying hard to stop reading it so I would stop crying, I couldn't. I read all the stories of autistic children lost to wandering. It's a very, very scary thing. I was struck by the fact many of the children were 7, and it made me think that it's a tough age for autism. Janey is developing her own will, and wanting to do her own things, and she is starting to attempt to "elope", as I have heard it often termed. Thankfully, her successful attempts have been very few so far. But several times she has made it into the cellar, and one horrible time she got away from Tony as a drug store and went to the car by herself. He watches her like a hawk, but it takes one second of distraction. It happened once at school, under the watch of a teacher I would truly trust with my life. And lately her special ed teacher has reported she's been running in the courtyard where they have recess. The school was designed in the 50s, but it was like it was designed for autistic kids, as recess is in a huge courtyard in the middle of the donut shaped school, so running isn't as serious as it would be, but they have worked out a game to work on it---yelling "STOP" after letting her run, or Janey and one teacher running while the other yells stop. We are all aware how vital the lessons about eloping are.

And yet it can happen. My heart broke reading those stories. Many of them were spurred by a child's obsession, often with water. You combine a child that can get obsessed with something like no-one on earth, a parent that might have gone nights without sleep, and you have a recipe for disaster. Your eyes close sometimes when you haven't slept. Or you succumb to the temptation to take a second for yourself. You start reading that interesting article on the internet, or looking at a bird or tree while you're outside. And your child is attracted to something, and slips away. Parents and teachers of autistic kids are being asked to be superhuman. No one person can do it. That's where my post yesterday comes in. The need to respite, for support, is not so the parents can sit around eating bon-bons. Many times, while Janey is at school, I sleep. I do the laundry I can't do when I am with her, as it's in the cellar. I talk to my boys. I pay bills. All things other parents do, but things I literally can't do unless someone else is watching Janey. It's why I love school, and after-school. They save my life, and possibly Janey's life. It's also why anyone working with autistic kids deserves our utmost respect, the pay they have earned and their own respite too.

This is a bit of a rambling post. My mind doesn't stay organized when thinking about my biggest fears.

Summer

The last week has been fairly tranquil. Janey is calm most of the time. I'm not asking much of her---I'm getting into my default hot weather mode, which is going no-place and doing nothing. I HATE hot weather and it's been a hot summer. Janey has been watching more TV than I'd like, but she likes it and is really reacting to it---not just sitting there staring at it, but laughing and playing close attention to her favorite parts. We are working on workbook pages and papers the school sent home a lot. Janey will try if I have M&Ms. She is getting pretty good at tracing paths, like when the paper has a little maze to follow (but not really a maze, as it's all the right way). I am trying with letters, but I don't think she gets them at all. Numbers are a little more promising. Shapes still a struggle. Her best area is naming things, like when there are pictures on a page. IF she knows she might get a reward, she'll name all kinds of things. She often just uses the name of the last thing I showed her, though, if she's not really trying---like I'll show her a pig and name it, and the next thing is a table or something and she'll say pig. It's frustrating. It makes me feel like I'm trying to get her to do a party trick she really doesn't get. Her talking has lessened again lately. It's mostly all the old mold---"I want...." She fits everything into that mold, creating sentences like "I want turn off the light" "I want I will get you that"---meaning she wants me to turn off the light or she wants me to say "I will get you that". Sometimes she emphasizes the "I" part with pointing to herself.

I think she does a constant monitoring of the areas she wants to explore. If I leave the fridge un-bungee-corded for ONE SECOND, she is there taking things out. She checked the door to the hall many times an hour, as she does the bathroom door---she very much wants to start a bath for herself with her clothes on.

We had a very delightful day last week. I had everything locked, and I knew she couldn't get away, but I looked away and couldn't find her when I looked back. I checked everyplace (and we have a sadly small apartment) and didn't see her. I was starting to panic, although there was literally no-place she could have gone. I looked again and found her where I hadn't looked the first time---in the cat litter box. Like it was a sandbox. I admit I screamed at her. I think it's the first time I all out screamed at her. I am not a screamer. But I was so worried at not seeing her the first time, and so sickened by her thinking that was a place to play, and so annoyed as I had just given her a bath. She was very upset by my screaming. I was surprised it affected her so. She looked so sad. I gave her another bath, of course, the bath of a lifetime. During the bath I asked her more times than I needed to to tell her she was sorry, which she did. Afterwards she wanted me to hold her for a long time. I talked to her about not going in the kitty litter box, how we NEVER EVER EVER go in there, etc. She hasn't been back. I hate screaming like that. But I guess it was a natural reaction and probably did make an impression.

Worn Out

The screaming is still mostly not happening lately, which is wonderful. It's been replaced, though, by a sudden desire to escape. Janey is drawn to any unlocked door. She wants to go up and see her uncle, who lives upstairs, every minute of the day. We have to keep the doors to our apartment, one of which leads to front stairs and one to back stairs, locked at all times, with chains also. Janey is studying the locks and chains, and I think will soon figure them out. We have put hook and eye bolts all around too. It makes getting out of the house a long process for all of us. We are lucky our doors don't open directly to outside. That would terrify me. She also is drawn to the bathroom---she wants to go turn on the bath water or the sink water and play in it, so we are bolting that door too. Even with just the rooms she has left, she finds many ways to keep the day hopping---she will take everything out of the fridge, so we bungie cord that shut, she likes to take silverware out of its drawer, and we need to figure out that one, she turns on and off lights all day, she tries to use the remotes and leaves them all around the house with the TVs and video games in a state of random on or off and with all sorts of reconfigurations. She still sometimes puts random things in her mouth. She woke me this morning by ripping the pages out of a book in my ear. I literally have to watch her every, every, every second. I would be reading this if I had a "regular" kid and thinking---every mother should do that. Well, you don't have to in the same way. You can read a book while they watch TV, you can let them play with toys in one room while you are in the other, you can doze a minute on the couch if you are very tired. I know---I had two more or less "regular" kids that age. It's nothing the same. It's a constant state of alert. I've taken Janey to friends' houses in the last week or so and they have admitted they are exhausted when I leave, and that's with me AND them watching her. I've been lying in bed worrying about school. I picture her opening the door constantly and taking off down the hall. I know that she is watched very, very well at school, but I still worry, as I do any second she's not right next to me. I think part of it all is that she'd rather just do something for herself than ask me---that's usually a lot easier for her. She is better with her hands than the boys were at her age, because they were askers---they asked me to do what they needed done, probably more than most. Janey just goes ahead and tries to cut cheese up, or spread butter on bread, or go for a visit upstairs---asking is too hard. I am so tired. I need a break. But my mental state is still much better than it was during the "screaming time". So somehow I'll get through the summer.

My morning so far

4am---Tony's radio alarm goes off loudly, but not loudly enough to wake Tony, although it wakes Janey and me. Janey luckily goes back to sleep after a little crying

6am---Janey wakes for good. She is not happy. I give her milk, oatmeal and an apple. She eats them, is happy for a bit, and then starts the daily screaming spell. She screams for an hour. Most of this time, I have her stay on the "screaming couch". My head pounds. Finally, she stops as quickly as she started.

7am---Janey tries to sneak upstairs to see Uncle Pino. Her new thing is opening the door to the hall and going up on her own. She did this yesterday for the first time---I was turned away and she was up the stairs before I turned back. Now we are using the lock and the chain on the door. She is working on figuring them out. Tony went last night to buy lots more chains.

7:30am---pull-up is off. Janey sits on the potty---which she likes to do occasionally, although NEVER ONCE has she actually used it for its intended purpose. But it's good to see her sitting there.

8am---I put in place my summer plan of getting out of the house early, and we drive to Houghton's Pond, a park and swimming place a few towns over.

8:20am---out of the car at Houghton's. Janey is very happy and the weather is perfect. We run over to the playground. Janey stops short. I wonder if she's overwhelmed. In a minute she takes off her Crocs, which I notice are wet. She has peed into her pull-up. She holds her urine forever, and then pees so much it soaks everything. We head to the car and change her shorts and pullup.

8:45 Ready to finally start the fun at Houghtons. We walk toward the water. I notice Janey is walking oddly. I check---she has filled her pull-up the other way---something she does about once every 2 days. I am out of fresh clothes. We head back to the car

9am---we drive home.

9:15am---change all of Janey's clothes, have coffee, try to think what to do the rest of the day.

Making tough decisions

Lately I've been realizing there is just so much I can do in life, and sometimes I have to just preserve my sanity by not doing things I just feel like I can't do. I won't get into all the details, but I had made plans to do something for a friend, and just felt like I'd hit a wall and couldn't take doing it---it would have involved a long car trip and a weekend away and I knew it would be hell on wheels with Janey upset the whole weekend and me exhausted (I was sick on and off for a month) and I just drew the line. I am not sure if it was the right thing to do, as I know I hurt the friend very much, but I am not going to be a good mother to Janey if I am not able to function. It is hard as I know that no-one without a child like Janey really, REALLY gets it! (Thanks for being out there, Michelle!) Even days she seems happy and cheery and sweet, it can all turn in a second. The picture here is from today---we went into the city to a free concert by There Might Be Giants. Janey enjoyed the concert overall---she jumped up and down non-stop and didn't cry, but I had to hold her hand EVERY second as if we let go even for a second, she bolted into the huge crowd and someone had to run as fast as possible to grab her. She's a fast runner. And I was on edge every second, hoping she would stay in a good mood, not freak out, not get lost, not ruin everyone's day. I can't say it was enjoyable for me. But probably no-one there would have guessed that---I am not going to be grouchy at all times and not smile and remind everyone how hard my life is, and they can't read my mind, so I think sometimes since I am the one responsible for her and no-one else ultimately (when Tony isn't there), it is just impossible for them to really, really understand. Actually, Janey has been great lately a lot of the time. She actually sat through TWO meals out and allowed us to enjoy our meals. But when I say she's been great lately, I edit out the at least hour or two each day probably she spends crying, either off and on or non-stop. And I edit out all the things we don't do or have to do to keep her happy---all the times the boys don't get attention, or we don't go someplace we'd like to, or I am just vigilent making sure she isn't running away or eating things that aren't food or exploring the contents of her diaper or taking off her shoes and socks outside or taking toys from other kids or so on and so on and so on. I sound like one big run-on complaint here, but I decided when I started this blog that here was my place to vent, because so much of the time I am concealing how I'm really feeling.

Anyway, after all that rambling, I worry I've really lost a close friend by drawing the line about what I felt I could do. I don't want to lose friends, but I guess my family has to come first, and because Janey is the one in the family that has the most needs and needs me most, I can say Janey has to come first. And to be able to be there for Janey, sometimes I have to put my own needs first. And that's the hardest part.