"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager

The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"

Jealousy, Anger, Boredom, Fear....

In my own mind, there is a list of acceptable emotions to have as a parent, especially the parent of a child with autism. Happiness, pride, love, determination, hope, curiosity, amusement, empathy---you'll notice the list is full of positive or encouraging feelings. But there's also a list of feelings I classify as, if not forbidden, at least not to be spoken of much. I'm going to try hard here to be honest about some of those.


Jealousy


In my ideal version of myself, I'm never jealous of other parents or kids. I delight in what Janey can do, and never think about what other kids are doing. In reality, sometimes I am so jealous it's hard to describe. I see other girls her age on Facebook, doing all the regular 13 year old girl things, and I can barely stand it. I look at other mother/daughter relationships, with all their ups and down, and I long for that kind of relationship in my own life. Every child with autism that functions at a higher level than Janey can make the green-eyed monster come out in me. The jealousy isn't all the time, but when it shows up, it's powerful.


Anger


We got a new couch recently. For the few of you that have seen our furniture, you know it was highly, highly overdue. It's nothing fancy, but I had this dream of it looking fairly good for maybe, say, a month. This Sunday, as Tony drove Freddy back to school and I stayed with Janey, against my better judgement, I went to the bathroom while Janey was watching TV. In the few minutes that took, Janey got a bottle of salad dressing out of the refrigarator and, for reasons known only to herself, poured the whole bottle on the new couch. I don't get angry that easily, but I made an exception there. I was furious. Life with Janey presents a lot of moments like the Couch Incident. In some ways, it makes no sense to be angry at Janey. It does no good, I don't think she usually gets why I'm angry, it doesn't do anything but get us both worked up. But having a child who does inexplicable and destructive things on a fairly regular basis---yes, I get angry sometimes.


Boredom


For some reason, this feels like one of the most taboo emotions to have when dealing with your autistic child. I feel like I'm supposed to consider every moment an exciting learning opportunity, a chance to teach and help. However, the truth is, sometimes life with Janey can get boring. Her favorite thing to do with me is what she calls “Snuggle on Mama's bed”. In reality, it's her bed, and it's not usually really snuggling, it's lying there next to each other. My role in this game is to sing little songs and recite nursery rhymes and otherwise carry on a monologue. Sometimes this time feels wonderful, a time of connection between us. Other times, though, I am just plain bored of it. Janey doesn't want me to sing or recite or talk about anything new. She is open to new music in the car, but not when we are snuggling and I'm singing. She doesn't want to talk herself, or be asked questions, or listen to any books except a few nursery rhyme ones and occasionally “Go Dog Go”. I'd say we spend a couple hours a day in this mode. And it gets boring. Very, very boring, at times.


Fear


Recently, there's been attention in the news to the hideously high rate of abuse of those with special needs. I can't read through these articles, but I've read enough. When I think about that kind of thing...well, often I just can't. The fear would overwhelm me. And in the background, there is a fear that never ever goes away, the fear of what will happen to Janey when Tony and I are gone. When I think about her in any kind of situation where she is scared or confused or being hurt or not cared for---the fear is horrible. Add to that the fear that was planted, planted deep, when she lived with a burst appendix for three days without us knowing, the fear of the harm that can come from her lack of ability to communicate well...the fear is always, always there.



There you have it---the emotions that often get left out of what is openly discussed when talking about this special needs parenting gig. It's not an easy job. It's the job I'm committed to for life, and my love of Janey is my pay. But like any job, no matter how well paid, there are days you just want to gripe, to speak openly about the sometimes tough work conditions with others on the work site. Thanks for listening.

Sometimes, you do have to cry

I've been working at starting seedlings inside a lot this spring.  It's been a mixed bag of successes and not.  I started everything too early, and the spring has been very cold, but everything was getting too big for the starter pots and too leggy to live, so I had to put a lot of things outside before they were ready, and they are not doing well....and I could go on and on.  All this is said as background information for yesterday and my big cry.

Janey came home from school in her typical after school no talking mode.  We have worked out what she likes to do, and it doesn't need a lot of words---a little cuddle, then a lot of cheese and onions, then some videos, then usually a shower.  We did that routine, and I put a dress on her to be ready for the next part of her evening routine---a car ride with Tony when he gets home.

Not my actual seedlings, but very similar ones!

Then I made my big mistake---a quick check of my email.  Janey was happy, in the next room, watching a video.  I got an exciting email from William, the older of Janey's two brothers, saying he had been nominated for a history honor society, kind of like Phi Beta Kappa for history majors and historians.  I was very proud of him, and wrote a quick email back to say so, and then started to forward his letter to his grandparents.  Janey came over at that moment, and I noticed her dress, previously clean, was covered with dirt.  I ran over and saw she had somehow, in the literally three to four minutes I hadn't been actively watching her, played around with some pepper seedlings I had been planning on planting outside that afternoon later.  They were all over the floor, dirt was everywhere and a spring's worth of growing them was going to be for naught.  It was actually pretty impressive how much she did in so little time.

I stayed calm.  I didn't even feel like being angry---I don't get angry that often.  And at first, I didn't even feel that upset.  But as I started to clean up the table, floor and Janey, I started to cry.  I couldn't stop, once I started.  I had been feeling low for a few days, and it all hit me hard right then---that still, after all these years, it was still impossible to have a few minutes to myself, how it felt unfair to William and to Freddy how rarely I could concentrate just on them, how I couldn't see any end in sight to the tough parts of life with Janey.

As I tried to clean, she decided she wanted a video.  I told her I had to clean up first.  She didn't take that well, and started screaming and arm biting.  I kept cleaning, and kept crying.  When she saw I was crying, she gave me a curious look, but then went back to screaming "I WANT KIPPER!"  In that moment, I felt totally defeated.  I felt like I can do all I can to keep Janey happy, and still, the minute I can't do what she wants that second, she's furious.  She doesn't think "Gee, she's been doing what I wanted all afternoon, and in fact for years, really.  I made a huge mess and she's cleaning it.  I could lay off her for a minute"  Of course she doesn't think that.  It's not in her to think it, and when I am not in a state, I can accept that.  But as the vacuum jammed and the floor became more covered with wet dirt and dead seedlings, I wasn't thinking well.

Life with Janey isn't easy.  I know here I'm supposed to say life with any child isn't always easy, that the special rewards of being her mother make up for the tough times, that it's not a child's role to make the life of their parents easy---I know all that, and I believe all that.  But there's a difference here. Although she makes some progress in some ways, although as I wrote about recently, her stages like the mischief stage do eventually get better, Janey isn't ever going to really grow up.  There isn't going to be a day when she truly understands that I'm doing the best I can, that maybe she could wait five minutes for a video while I clean up, that she shouldn't toss dirt on the ground, that I have feelings too.

I've regrouped today.  I'm ready to get back out there, to do my level best to help Janey have a good life, to try to be the mother I want to be.  But I am pretty sure each of you knows the feeling behind the tears yesterday.  If we don't admit it's tough sometimes, it's a very lonely kind of sadness.  We have to be able to admit this isn't an easy gig, being a parent of a child like Janey.  I am going to resist for now the urge to modify that statement, and just let it stand, for now, for once.  It's not easy.

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.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

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 time lost with Janey's brothers

Last night was a little bit of a tough night for William, my older son.  It was the night a lot of colleges gave decisions, and he didn't get into a few he hoped he would.  He's still been accepted at several of his top choices, and he has gotten great scholarships, but that didn't change the fact it hurts to be rejected, no matter how much you know that the schools are hugely selective and that to get on the wait list to two Ivy League schools in a night is not a bad thing.  Especially when you are 18, it feels huge and sad.  I tried to comfort him, and I hope I did, some, but I think he got more comfort from his high school adviser, and that's okay.  He said that she had been with him for more of the journey, so she understood what he was feeling more, and that was fair.  But still...it made me sad.  It made me sad because that is not what I wanted to be as a mother.  In my mothering dreams, I'd be there with my kids, all of them, for every step of everything.  We would have visited all the colleges he had dreams of, together.  We would have worked together on his essays (essays that in this life I have not even read, but that's his choice---I could have done at least that!), I would have had time to always be around when he wanted me around.  The fact that I think he's just as happy I was quite hands-off (he's told me many times that is how he likes it, and actually thanked me for not pressuring him or hanging over him) doesn't matter in my mind.  If he HAD wanted me along for every step of the process, it would not have been possible.  With Janey, I don't have that kind of freedom.  Every trip, every free time block, every day out has to be planned and worked out in advance.  It can never involve both Tony and me, except for rare cases when one of the boys can watch Janey or when she is at school.  And even the smaller times, the random moments of just being free to listen to William or Freddy, are limited.  I can't tell you how many times that that I've had to say "Just a minute---Janey is being crazy and I need to keep an eye on her"  Or the times I've tried to sneak a moment to look at something on their computer and Janey used the time to spill something, or freak out, or come ask for food that she wants that second.

When I read autism memoirs in the past, there was often little mention of siblings, except something along the lines of "Of course the intensive all out full press routine of curing our little guy left little time for his sister, but she loved to help us, and she was stronger for our hours of neglect of her"  Not exactly that, but that's how I read it.  I was determined when it became apparent how great Janey's needs were that I would not be like that.  I hope I haven't been.  Our situation is a little different than some, though, because Janey is the youngest, and the youngest by so many years.  If she is hungry and the boys are hungry at the same time, I can tell them to fix themselves something.  I can't tell her that.  If she is crying and they want me to watch a funny YouTube video with them, I expect them to not mind that I have to tend to Janey first.  If I choose the video first, they know that disaster will follow.  But that doesn't change the fact they are shortchanged.  They don't get my energy, my time and my ears as much as Janey does.  I hope they know they get my love just as much, but I still hate the inequality.

I have great sons.  They are independent, fascinating, wonderful guys.  I don't write as much about them as I would, because they are teenagers and no teenager wants cute little stories about them to be out there in the Wild Wild World of Web.  I don't think they have been damaged by Janey's autism, but I don't think there's any question their childhoods and teen years would have been easier without her being autistic.  Just like I sometimes dream of the daughter that is the one I'll never have, they probably dream of a sister they will never have---one that will be there to listen to them, to share grown-up things with them, to talk to about all the things Tony and I did wrong---the roles a sibling plays.  Instead, they know in their hearts someday they will be responsible for Janey.  They didn't choose to have a child as Tony and I did, but in the end, they will be the ones with the work of caring for her.  I can tell them that's not the case, but in reality, it is the case.

I know the conventional thing to say here would be to point out all the benefits of having a sibling with autism or another special need---how they have learned compassion, learned to love without expecting something in return, learned they are not the center of the world, learned that all people have value.  And those things are true.  But I think, overall, it's not a trip to Holland for them.  It's not just a different but equal sibling experience.  I want to thank them both, my amazing sons, for being kids I can feel so proud of, and I want to say I wish I could be the mother you deserve.  There's endless amounts of love for however many children you have, but there is not endless time, and that's the real kicker.

How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.

Better today, but what happened?

Janey is better today, thank goodness.  I don't know if we could have taken another day, although of course we would have, because we have no choice.  But it was a tough, tough, tough, tough couple of days.  Today there is some crying, but no-where near constant, and some long happy times in between.  Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse.  I hope tomorrow is okay at school.  If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't.  It would be like sending a very sick child to school, although the acute illness was mental, not physical.  But today she is mostly just Janey, never easy but her regular self.

So what happened?  Who knows?  The theories people have told me through comments are great.  I love getting ideas like that.  I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety  2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see  3---too much chocolate at some point, or other food with caffeine.  Maybe she snuck coffee at home or school  4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.

And what made it better?  Again, who knows?  Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway.  She need that time outside, more than most anyone I know.  He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts.  It seemed like after she ate a bunch of those, things turned around.  I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick.  Maybe her mind finished processing whatever was bothering it.  A bit ago, she said "I'm still happy when I'm crying"  We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason.  Again, probably not, but you just don't know with her.

Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits!  The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.

The Grinch shirt is my little piece of Bad Autism Mother dressing.  She was being grinch-like, so I put on her grinch shirt.  Hey, I'm not saint.  Let's hope tomorrow she can wear a cheery, sparkly, happy shirt.  Please!

The Nutella Battle

Nutella---who doesn't love that chocolaty hazelnutty stuff?  Freddy and Janey are both huge fans.  Janey is SUCH a huge fan that we are forced to hide the jar of it, so that Freddy can actually have enough for his favorite lunch sandwich to take to school.  The hiding place, in a drawer of an otherwise non-food storage bureau, worked well for almost a year,  until the day of the Great Lost Screwdriver Set Incident, which resulted in all of us having to do a huge search for the aforementioned set.  One of the places I looked was in the drawer with the Nutella.  I had hoped Janey hadn't noticed what was in the drawer, and we didn't move the jar.  That was about a week ago.  This morning, Janey was watching as Tony made Freddy his sandwiches, and she started begging for "butter", which is what she calls the Nutella.  Tony gave her a little, on a spoon, as if we tried to be more conventional and put it on bread or something, she would be very careful to only eat the "butter" off the top, and would drop the bread on the floor.  So we save the middleman and just give it to her straight, not too much, but a little.

Janey was in the other room when the Nutella got put back.  Tony left for work, which got Janey upset, and she I guess decided to calm herself down with a little snack.  I heard a telltale sound of a drawer opening, and sure enough---Janey was opening the secret Nutella drawer.  She knew exactly where it was.  I told her "No more Nutella right now!" and put the jar on top of the refrigerator, our last place left for putting things Janey can't have.  She immediately got a chair and dragged it over to the fridge, in my full view.  I said "NO, Janey!" in my firmest voice.  She completely ignored me---it was like I wasn't even talking.  Janey is good at ignoring, but usually she will stop for a minute, or will imitate me as she goes on doing what she was doing, but today, she was a girl on a mission, and didn't even slow down.  I of course grabbed the jar and held it and said "I SAID NO MORE NUTELLA".  Then I turned the top so it was on as hard as it could possibly be, because for now at least, I'm stronger than her.  I set it on a regular shelf, figuring the jig was up anyway, and I might as well not have her risking her life climbing to get it.

Then I sat back and watched.  Janey of course grabbed the jar right away.  I didn't say anything, just waited to see if the top was on hard enough.  Janey used every fit of force she could to try to open it.  Her face turned red as she worked as hard as she could, but she couldn't do it.  Then she surprised me---she took the jar and banged the lid of it on the floor hard three times---exactly what she has seen me do when I was trying to unseal a tough jar and get it open.  I was very surprised she had observed that trick and saved it in her mind.  She tried again to open it, and then went to the drawer, to look for the jar opening rubber circle.  She couldn't find it (as it's been lost for a while now, like the screwdriver set), but she said "CIRCLE!  CIRCLE!" which was another surprise---she had a mental picture of what she wanted, which I don't think I've ever been sure she had before.

After all that, yes, I did give in.  I opened the jar and gave her a few small spoonfulls.  She seemed satisfied and didn't try to get the jar again, at least after she saw I had screwed the top on very tightly again.

It's always interesting to me how much I can learn about Janey by just observing her, especially when she's very motivated to get or have something.  It's also scary.  At some point, I think she will be taller and stronger than me.  She is showing signs of having the occasional height that pops up in our otherwise short family.  What will I do when she is able to get at everything, open everything, when her ignoring my "nos" becomes even riskier?  I just don't know.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

Motivated to get it wrong

This morning, I worked with Janey on an on-line reading program her school uses and that you can use at home, Lexia.  Janey was happy to use it.  She was familiar with it from school, and was able to use the mouse pretty well and do the activities it asked her to.  At her level, it's mainly picking a letter, hearing how it sounds and what kind of words it is used it, doing a little game like a puzzle or a find-a-letter picture and then listening to two words and picking the one that starts with the letter you are working on.  Janey did well until that last part, and I noticed something odd about how she did on that part.  She got the answer wrong EVERY time.  There were only 2 letters to pick from, and the program was smart and moved them around after you got it wrong once, and pure chance would say she'd sometimes get it right, but she didn't.  And I soon realized why.  If you got it wrong twice, the voice said "Let me help you think about this" and then picked the answer for her.  Janey echoed "Let me help you think about this" in the exact tone of the computer voice, and laughed like crazy.  She had quickly figured out how to get what motivated her, by not getting the answer right.

That made me think how often something like that happens with Janey.  She isn't motivated to get things "right", whatever our notion of right is.  She isn't motivated to make other people happy.  She's motivated by herself---by what makes her happy.  So she'll spend long periods of time doing what look to me to be boring apps on the iPad if they make a sound she likes as a reward.  She'll work to get at foods we don't want her to have right then, if she can get a bite or two before we start all the yelling and showing her what a mess she made.  She doesn't care we are upset---she got what she wanted.

It explains a lot what makes learning hard for Janey.  It might not even be so much that learning is hard---it's that motivating her to learn is hard.  She can do quite complicated things when she wants to.  She's pretty much figured out Netflix instant viewing.  She knows if she wants strawberry milk, she needs to bring me milk, the strawberry powder, a glass and a spoon.  She can somehow "read" the VHS tapes, even ones without pictures, if it results in the right one being put on.  She knows the words to every Christmas song out there, and if you'll sing with her and leave out words, she'll show that.  But things she isn't motivated to do?  No way.  It's why giving her little rewards like M&Ms can bring out knowledge we had no idea on earth she knew, like the time she spelled her last name or said which brother was bigger.

And that's the challenge of autism and learning, right there.  How do you get your child to WANT to learn the things they need to learn?  I usually have no idea.

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.

Endless morning

Janey woke this morning in a mood. She has been awake for 90 minutes, and those have been 90 minutes in, well, I'll just say it, hell. Right now she is momentarily watching a video, but I stop writing every 30 seconds or so to check that is still the case. If I don't, she will dump everything she can find on the floor, she will break whatever she can get her hands on, she will scream and yell and hit.

The problem that started it all is a lack of raisins. Janey thought there were raisins in a place we've kept them before, up high so she doesn't just dump them all out and create sticky little places all over the house. We were, however, out of raisins. She did not accept that fact, and stood looking up where they should be, screaming "I WANT RAISINS" for a good long time. I should have just left it at that---at least it kept her occupied. But she does need breakfast, so I made oatmeal. She ate a bit, threw a bit on the floor, and dumped the rest in the sink, which is better than the floor, but we don't have a garbage disposal, so I had to use a paper towel to get it out and throw it away. In the confusion, I had forgotten to tie up the fridge, which we have to do with an increasingly complex system, as Janey has figured out all the rest. So she reached in and found yogurt, opened it and then dumped it. She was supposedly in time out after that, but of course I'm cleaning up the yogurt, and without someone sitting there keeping her in time out, it doesn't work.

Then she asked for a video, which I am sure all of you are thinking "Why in heck should that girl get a video this morning?" Well, it comes down to my futile hope to get able to drink my coffee. Too big a dream, but hey, I'm a dreamer. I took a few swallows of it before something in the video displeased her and she freaked out screaming. That screaming took on the form of saying "WAAAAA! WAAAAA!" in a very fake way. I was about broken at that point. She asked for another video, Baby Newton. She had an idea which cassette it was, but she was wrong. However, when I tried to put on the right cassette, she was not pleased. So I put on the wrong one, knowing it would not be a happy scene, and of course it wasn't. At that point, I just yelled at her, never a constructive thing to do, but I would guess a saint would not have been able to resist by then. I yelled she would watch that video or nothing. So she is, although I've gotten up 10 times to intercede in potential disasters, and to give in and give her one of her breakfasts of choice, a bowl of ketchup.

What's the point here? I don't know. The point I guess is that caring for a low functioning and emotionally volatile autism child is not easy. I look at myself in the mirror and I am aging fast. I live in a constant state of stress. The good times help, but when mornings like this come, it's not easy. I think how for some parents, this might be the worst morning they ever had with their kids, but for me, it's not even in the top 50.

Maybe the point is that it's good to have a place to rant, and you, my dear readers, are doing me a favor by listening. Thanks.

Ups, Downs, All Arounds

Knock on wood, in many ways this summer is going well. Janey has been happy for the most part, and we have had some good times as a family---times where we actually all enjoyed ourselves without one of us having to constantly be keeping Janey happy. She was happy along with us. We went to the beach, we went to Janey's new favorite restaurant Old Country Buffet (which used to have edible food, but I guess they can't afford it any more, but Janey loved the unlimited bacon bits and Chinese dry noodles), we had some times just playing with the cats and laughing all together.

The biggest shocker is Janey using the potty MUCH MORE! Lately, it's like all of a sudden she figured out how to actually sit down and urinate. She could always hold in the pee, but didn't seem to know how to release it when she wanted to. As I kind of always figured it would go, she just does it on her own terms---walks into the bathroom and uses the toilet like she's been doing it all along. In the last 4 days, she's probably peed in the potty 10 times, which beats her previous lifetime record by about double. I hope it keeps up. I wonder how it will be when school starts, as she is not usually open to suggestions as to when to go. She just walks in and goes when she needs to, and I doubt she'll have an easy time telling teachers when she wants to go. But that's a worry I'd have loved to have a year ago.

Summer school seems to be going very well! I've continued my incredibly lucky streak with good teachers, and her teacher and the aides in her room seem great. Janey is happy to go each day, and can barely bring herself to look at me long enough to say goodbye when I leave.

The downs are mainly the couple hours after school, and before Tony gets home. The boys are in summer programs and so aren't there, and I am just plain worn out, from heat or not sleeping or other things. And Janey is in rare mischief mode. The other day was a classic. She took a jar of Cherry Kool-Aid, almost brand new, and proceeded to try to make some Kool-Aid for herself by pouring it into (dirty) glasses and pouring soda into the glasses, in the brief time between when I looked up to see her happily watching TV and when I looked up a minute later to not see her. I ran into the kitchen and was met with a scene that looked like a crime scene---gloppy wet piles of Kool-Aid powder everywhere, Janey covered from head to toe. She is incredibly quick. I did a few experiments lately with faking looking away, and she is purposeful---she runs straight to what she wants to get at, like the liquid soap in the bathroom or her brother's Nintendo or the cat food, or just the sink, to turn on the water full blast, or the fridge to dump things out. It's incredible. If it wasn't so hard to deal with, it would actually be impressive. I try so hard to keep her engaged, but she is restless---even a TV show or video or book or toy she likes only holds her attention for a little bit before she has to run around a little. I think part of that is just her and not the autism---Tony is like that too, without the mischief.

The all-around is just life going on. I am making a conscious effort to spend all the time I can with the boys. It is like a clock is ticking, and I know 3 years from now, they will both be gone at college (most likely). Some of the family times all together are feeling poignant. I wish I could freeze time sometimes, and enjoy this summer and the times we are all laughing and happy together forever. I know the boys will not be going away for good, but it's never quite the same. And so I want to make sure to give all my kids the attention and love and fun they deserve. And gradually, we are learning how to have that with Janey as a full-fledged participant.

Throwing the Penguin

Yesterday we drove out to central MA to take Freddy to a cast party that was being held there. I'd say it was one of our more successful road trips with Janey. Very little crying, and lots of talking. Road trips have always been something our family enjoys, but we haven't done many for the past 4 years, because it's so hard with Janey, but maybe that is changing. We brought her iPad, although she didn't use it much, we had the iPod for her music, although we didn't listen to it much and I had a big bag of random stuffed animals I got for $4 at the thrift store, and I handed her one when things were getting boring for her. We also kept her very well fed. She asked for a Happy Meal early on in the trip, and we've come to realize that if she's at all hungry, even if she doesn't know how to tell us, she falls apart. Once she had the meal, she cheered up.

Among the cool things during the drive---Janey threw one of the stuffed animals at Tony while he was driving, which of course was NOT cool, but what was cool was what she said as soon as she threw it "We DON'T throw the penguin at Daddy while he is driving, Janey!" Both a very long sentence for Janey and one of the first times she's let us know that she did understand that what she was doing was wrong, before we had a chance to call her on it.

She also just interacted more with her brothers than she usually does. Them all being crammed into the small back seat probably does this some. Freddy was having a Slim Jim, and Janey wanted some. He gave her a little bit, and she said "give me more bite, Freddy!" Also, she wanted some candy that he had, and said "Those are not your candies, Freddy!"

The picture is of her in a mall ride spaceship. She was really too big for it, but she loved it!

Overall, a cheerful day---something I love.

The Start of Summer

Here's a picture from the year-end awards ceremony at Janey's school. The kids all look a little grim, which they really weren't! But I picked this picture because it shows both of Janey's outstanding teachers, and also the aide that was with her most (Janey is in front of him) I had some tears at the year ending. Janey had such a wonderful year, and accomplished things I never expected her to. She got an award for best handwriting, for learning to write her beautiful "J"! I can honestly say that is one award I have never gotten, and would never get, unless it was some kind of "worse" award, instead of best, as I have the worst handwriting I've ever seen. That's why I type everything!

I always dread summer. I've been that way since I was Janey's age. I like the order of the school year, I don't like hot weather one little bit, I just don't like summer. With an autistic child, summer means long days without a break. Luckily, Janey will be going to summer school again, which is 5 hours a day, once it starts in a few weeks. It's at a new location this year, and of course I'm nervous, but not as nervous as last year. I know it will be okay---maybe not great, but okay. And I've learned my own limits. As long as Janey is pretty happy, I need to have the break it provides. But these few weeks are going to be a little long! So far, Janey has been pretty much happy, but still doing mischief constantly, and I am in what I think of sometimes as prison mode. I can't do anything but watch her. I can't get laundry done, I can't work, I can't even lower my head much to read. I need to be alert every second. If I take her out someplace, I need to hold her hand without a second's break. That doesn't lead to being able to shop, although we did a quick grocery run this morning. The carriage makes it easier, and it was early, so the place was empty.

I don't feel the panic I have at some points. I know I can get through this. I have started to forget what any other life would feel like, and this is my life, now. I delight in Janey a lot lately, even though it's as hard as it's ever been. I've gotten through all the other summers of my life, and I'll get through this one. But boy, do I love September.

Doctor's Visit---a very tough day

Yesterday all three kids had their annual physical. We took the train into the city, where their pediatrician is. I'll have to say it was one of the toughest days I've had in a while.

Part of it was the talk I had with the pediatrician about Janey. I can't write about all of it right now---not to be evasive, but it's just too hard. It was about the future, near and far, and choices we'll have to make. It was a good talk, and I am so lucky to have a pediatrician who understands me and who I feel I have a mutually respectful relationship with. It means a lot to me.

Much of what made the day hard was just how tough Janey was. It made me realize how little I attempt to do with her lately. We used to go into the city a lot more, but I felt like a tourist yesterday. Even though we technically live within city limits, I felt in awe actually being downtown. For a few brief seconds when Janey was okay, I was thinking how I should go into the city more with the kids. But then Janey started freaking out. And continued, off and on, the whole time. She'd be okay for a while, but then just start screaming and struggling and trying to run away. During the examination, it took all my strength and the doctor's strength just to be able to look in her ears and mouth. She yelled, tried to bit, furiously lashed out. After the visit, I took the kids for burritos. It was one of those things I shouldn't have tried to do, but once in a long while, I just want to do a normal family thing. Midway through eating, Janey lost it, went hysterical, tried to run out. The place was packed, and I am not being paranoid when I say everyone in there was staring at us. It's hardest for the boys. No boy that age want to be the center of negative attention.

When we finally got home, of course I couldn't relax. Within literally one minute of walking in the door, Janey found a bottle of soda and poured it on my computer keyboard. She spent the rest of the afternoon and evening periodically tantrumming. Thankfully, she was fast asleep early.

What hit me yesterday is that it's not getting easier. I think what was keeping me going is the thought that as Janey grew up, it would get easier. It did with William, it does with many kids. But it's not with Janey. Lately, it's gotten much harder. I can't sugarcoat it. I am so tired, physically and mentally. It is even worse for Tony---he works all day and comes home to a broken me, and then works all night taking care of Janey. It's hard for the boys, not having a relaxed home ever. And of course I know it's hard for Janey. The world must overwhelm her so much. I think she acts out in a vain attempt somehow to gain control. I can no longer think of my life having a movie ending, where things get resolved and we all fade out to a happy scene. I don't think that is going to happen. This is real life. Real tough life.