"Want to take a shower?" times infinity

Janey slept very little last night. Instead, she spend the night waking up Tony and me over and over and over and over, each time asking, in the exact same tone of voice, "Want to take a shower?"

 After all these years, we still have no idea how to best respond to repeated questions like this. You would think we'd have figured out a strategy that works. The fact we haven't makes me think there isn't one. 

 The rules about a shower are something we stay pretty consistent with. During the day, Janey can take a shower pretty much any time there is time. She sometimes takes 10 a day. The water bill is high, but there aren't that many things Janey loves to do, and we are happy to make her happy. However, during the night, we have a rule that showers have to wait until 5 am. We don't want to be turning off the shower (she can turn it on herself) and drying her off and helping her get re-dressed over and over, and we also of course want to encourage sleep over constant showering. So it's not that she thinks that we might give in and let her take a shower during the night. We just don't.

 So...how do we respond to the endless requests? At first, we just say something like "No, it's not 5 o'clock yet. No showers during the night". This makes little to no impression on Janey. She will ask again, after a minute or two, forever. After a while, when we have been driven to that point, we usually say something like "We'll answer you two more times. After that, we aren't going to answer you if you ask for a shower". We try that for a while. Again, it makes no difference, except sometimes then Janey starts crying from our lack of answering, and we feel guilty. We try other things. Distraction? We try. It's hard, during the night, when we are exhausted, but we try talking with her about something else, snuggling with her to try to get her to sleep, letting her watch videos, things like that. It doesn't work. She will keep asking, in the tone that sounds like a recording, all night.

 At some point, because unfortunately we are human, we might answer in a tone that allows in a little anger..."NO! No shower! We've told you that a hundred times! NO SHOWER!" That does no more good than anything else, except for making Janey cry almost for sure.

 We've tried other exotic things over the years---a recorded answer we play on our phone, a social story about showers being only for the daytime, a written answer on paper we show her. Nope. No dice. No difference.

 You might be thinking now---what if they just gave in and let her take the shower? Well, during the day, we do that sometimes, and once or twice, on long, long nights, we've tried that too. She's be happy for the length of the shower and maybe 5 minutes afterward. Then...you guessed it...again, "Want to take a shower?" The problem is, I think, that Janey has a hard time thinking of things she wants to do. She truly doesn't want to do that many things. She wants car rides, showers, taking the bus to school, eating and videos. During the night, she does sometimes ask for car rides, but she does seem to get that when it's dark, that's not going to happen. We try to keep middle of the night eating at a minimum, but we sometimes do leave food for her to eat around. She can always watch videos. The bus to school---she does ask for that, but she seems to get pretty much that's only once a day. But showers...I think she knows that she COULD take a shower, even if we aren't allowing it, and when she is awake and restless and bored, a shower seems like a good idea. And her understanding of time and her lack of understanding our annoyance, keep her asking over and over.

 I have no idea how to deal with this issue. And I am very aware that many people like Janey don't talk at all, and that even a repeated question would be something their loved ones would love to hear, and I try to keep that in mind. And I am glad Janey is expressing what she wants. But at 3 am, after being kept up all night, when the question gets asked again---well, that's tough.

 This sort of thing is why I worry about the thought of Janey ever being cared for at a group home or the like. We love Janey extremely much. How would someone react that, although they might care very much for Janey, they might be a professional with a huge amount of patience, how would that person that isn't her parent react to a repeated question that even for us, making us half deranged? The scares me.

This kind of issue, the kind of problem that seems without a solution, is one of the hardest parts of being Janey's parents.  There isn't a guidebook for this kind of things.  Janey's mind, her understanding of the world, her wants and needs, are just not typical, not the mainstream.  Solutions that would work for those with less severe autism, like rewards or reasoning or even punishments or tokens or social stories or so on...not something that Janey gets or is helped by.  

So...today we are tired.  We are frustrated.  We are glad it's daytime, for now, and we can give in and let Janey take a lot of showers and car rides.  We look forward to school tomorrow.  We go on, loving our Janey, managing as best we can.

Summer update

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

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

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

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

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

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

Independence when possible

If Janey were able to tell me what she most wants in life, my guess would be it would be increased independence, and that can be heartbreaking to me.  With her intellectual disabilities and severe autism, she will never live independently, she will never be able to leave the house on her own, she will never indeed even be able to be at home alone for even a minute.  The few times she's been able to express thoughts in this area, she has asked me to go inside while she plays outside.  Even that isn't really possible---we live in a busy street in the city.  We sometimes stand just inside the door, to give her a little feeling on being on her own, but that's the most we can do.

So lately, we've been working on ways Janey can be independent in the areas where it IS possible.  We've found a bonus in this---it makes life a lot easier for Tony and me, and gives us a bit more time to ourselves.  It's a true win-win.

We had a breakthrough a few months ago with the shower.  As you might recall, Janey adores showers.  She will happily take four or five a day.  Once she hopefully starts getting social security, I think most of the money will go to our water bill!  But we have gotten weary of the shower routine, which we somehow assumed we always had to do most of the work for.  Then she surprised us.  One of the those nights when we simply couldn't keep our eyes open any longer, after she had been awake night after night, she got tired of waiting for us.  We awoke to find her soaking wet, having given herself a shower.  We rushed back to turn off the water, but otherwise, all was mostly fine.  

We had no idea Janey knew how to turn on the shower.  It's a little complicated, like everything else in our old house.  And the next day, when she asked for a shower, we told her to start one herself, to try to see how she did it.  Well, she just stood there.  We decided to wait it out, and finally, after 38 minutes (we kept track), she got into the shower and reached up and turned on the water.

So---the jig was up.  Now, when she asks for a shower, we tell her "Go ahead!  Take a shower!"  And she does.  It sometimes takes a very long time for her to do all the steps, but she's happy, going at her own pace and working toward what she wants.  I still wash her hair when it needs washing (maybe someday we can figure that one out, but not yet!) and we block access to the shower now at night, to avoid water being left on for hours and overflowing (turning OFF the shower isn't in her toolkit yet), but during the day, if she wants five showers, she gets them, and we get a little break.  We check on her a lot, we make sure all is well, but mostly, she does it on her own.

Another breakthrough, one that took Tony and me stupidly long to figure out, was TV access.  We have an Amazon Fire system to access the streaming services we have, and even for us, it's not the easiest thing to figure out.  For Janey, despite us trying very hard for years to teach her, it seemed impossible for her to learn.  So when she wanted to watch a show, she'd come to us with the remote and say "I need help!"  Which we were happy to do---for the first 5 or 10 times an hour.  The problem is that she doesn't generally just watch a show or movie all the way through.  She like the intros or certain scenes, something she can do easily on her phone and tablet, but something beyond her on the "big TV" using the remote.  

Finally, we realized that all the streaming services can be accessed by computer.  Janey uses a mouse with ease.  I'm not sure why she can use a mouse but not a remote, but I think it has to do with the visual cue of the caret on the screen.  Our TV is set up so it can also be a computer monitor, with the push of a button.  So---we "lost" the Fire remote.  It stays lost at any time Janey is home.  If she wants a show, we tell her "You know how to do it!" and she does.  She switches easily between services and YouTube and rewinds and repeats to her heart's content.  It was a rough few days at first, with many hours of "I need help!", but when she realized the remote was "lost" for good, she adjusted.

This is an example of something that we should have figured out years ago, and you might wonder why we didn't.  I think part of it is we just get tired.  It can feel easier in the moment to once again put on a show for her, to say "Okay, one last time!" when we know it's not one last time, than to take the time to figure out how to change things up.  I have a feeling most of you caring for someone like Janey get that.  Constant tiredness, constant vigilance---those are not friends of innovation.

The third area we've made some progress with is Janey being awake at night.  No progress in keeping her from BEING awake at night---we've realized that's probably not going to happen.  Janey goes in cycles.  For a few weeks, she sleeps more than most people---sometimes going to sleep soon after coming home from school and sleeping all night.  Then there might be a few days of near typical sleep.  Then....the few weeks of very, very little sleep, where she can be up nights in a row with NO sleep, or sleep only a few hours a night.  

These times are currently the hardest part of being Janey's parents.  It's no coincidence that being prevented from sleeping, being woken all night, is sometimes used for torture.  When we are up all night with Janey, we simply don't function at all close to normally during the day.  We are in a constant haze.  So, figuring out the nights is a priority.

We are lucky in a few things.  Janey is not an eloper.  She doesn't try to leave the house.  Over the years, we've childproofed, or Janey-proofed, so that she can't get at things that aren't safe for her.  But still, when she didn't sleep, we didn't sleep.  Part of that was just habit---even though she now was pretty safe at night awake on her own, we couldn't relax.  And partly, it was because if she ran into something she wanted we couldn't help with, she'd wake us up.

This problem isn't solved, but it's better.  We have started setting things up for Janey to access in the night.  Her phones and tablets are always accessible and charged, and we finally figured out (thanks to Freddy, our in house IT guy) how to take the passwords off them safely, so she doesn't need to wake up to constantly reinput the passwords.  We started leaving food Janey likes front and center in the fridge, leftovers for her to find.  She can get herself a midnight snack if she wants.  And now, we can better doze as she's awake.  Not totally---she can be loud, and she still wakes us fairly regularly, but our sleep (and by our sleep I'm doing a disserve not to say Tony's sleep, as he has always done the lion's share of the night shift) is more than it used to be.

It's striking me that it's fairly little things like this that make life easier---finding small ways to let Janey be the adult she is, and let us be the tired late middle aged people we are, letting us co-exist in a way that works a bit better for all of us.  There's areas that can't be changed---Janey is not going to learn how to drive so she can take herself for the car rides she so craves---but at times, it feels like we are making progress in figuring out, after 18 years, this unique lifestyle.

The Things Janey Cannot Change---a plea for serenity

 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.  

I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?"  I've tried taking her at her word, and reaching in to help her get out.  I've tried getting her to repeat "I want you to fix the water" before I will do it.  I've tried everything I can think of.  And still, Janey asks to get out when that's not what she means.

I can think of so many other examples like this.  One that keeps coming to mind started at age four, when she first starting with ABA.  The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?"  I think she started calling it that because she liked to have it bounce up and down, like a yoyo.  The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky.  And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky.  Last month, I showed Janey a slinky from some box of sensory toys I'd gotten.  Janey grabbed it, saying, of course, "Yoyo!"  I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo.  But that's her name for it, and it didn't change.

When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!"  Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work.  She still says it, every time.

The same unchanging Janey shows up in ways besides talking.  She is drawn to beds when she has a full bladder, with predictable results.  Believe me, she knows that's not a behavior we like.  Believe me, we have tried extremely hard to stop her from that behavior.  But it continues, year after year after year.  Janey likes to rock in the car to music.  Doing this rubs her neck against the seat belt, and cuts into her neck at times.  I'm sure this hurts, but even that doesn't change her rocking.  Janey stuffs her mouth full of foods she likes, especially salami.  We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail.  

It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions.  I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established.  This worries me.  We are used to her.  We get frustrated, but we love her and accept her, even sometimes through gritted teeth.  But the wider world?  The world without us with her?  I can see how she could seem willful, stubborn, provoking.  I can see how it would be hard for others to understand the depth of her mental barriers to change.

By this point, we've accepted that Janey simply can't change in some ways.  It's not like she doesn't learn when she can.  Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well.  And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds.  And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors.  We, and she, just can't do it.

What is my message here?  I guess it's to plead for the world's understanding for Janey and all the others like Janey.  They are doing their best.  Those of us working with them are doing their bests.  But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.

Here's a picture taken today of my bewildering, beloved Janey.

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Still Screaming After All These Years

This afternoon was hellish.  There is no other word for it.  The morning wasn't any piece of cake either, but things really kicked into gear this afternoon.  It's hot as, well, hell, about 98 and humid.  Janey didn't sleep well last night, and although she slept in some this morning, we all are tired.  I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him.  As I left, Janey was screaming for a car ride.  Freddy was staying with her.  I told him if it got to be too much he could call me and I'd come right home (it's right around the corner).  He was a trooper and handled her.  When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.

She was no longer interested in a car ride.  What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room.  So I did that.  In the course of about an hour, I changed shows literally about 30 times.  Most of these times included tears from her when I didn't immediately understand what show she wanted.  As soon as the show was on, she'd say "Go away!" and point to my bedroom.  I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again.  If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream.  One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.

About every third show, Janey asked me to cuddle on her bed with her.  I did.  The cuddles lasted at most 30 seconds.  And then---back to the shows, the sending me away, the asking for a new show...

You might ask, very reasonable, why I let this go on for an hour.  The answer is...I'm tired.  I tried the more measured approach the last few days, the #3 approach I mentioned in my last post.  I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well.  To say the least.  This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy.  She does ask to change shows, but not at that pace.  She does scream, but not constantly.  But today, whatever haunts her brain at times was in full force.  I think it's OCD.  The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.

I know those feelings.  I've had those feelings, so many times.  I am on medication for those feelings.  I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read.  But Janey doesn't.  To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities.  And often, doing them for a while calms her.  Not today.

After an hour, I was at the end of my rope.  I turned off the TV and suggested a shower.  That often can break the chain.  Not today.  Janey did want a shower, but she screamed all during it.  She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements.  If it breaks, there will never be another one.  It didn't break, but it hit the floor hard.  Janey got out of the shower after a few minutes, still screaming.  I was feeling shaken.  I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone.  For a long, long, long time, after I hung up, Janey screamed.  I spoke to her as soothingly as I could, while literally praying for calm.  I am fairly agnostic, but you know the saying about foxholes.

And then---Janey calmed down, for now.  I put the TV on computer mode, so she could pick her own videos, which she is doing.  She hasn't asked for anything during the 15 minutes or so it's taken me to write this.  Just now she's come over and asked for a car ride.  Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile.  It's too dangerous.  So, she has settled for a walk to the store.

Why do I write this?  It's not, as sometimes parents like me are said to be doing, to get sympathy.  Raising Janey is my job, and my privilege.  Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!"  or "I could never do what you are doing!"  Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them.  It's not to try to get help.  I've given up on that.  The kind of help that would actually, you know, help, doesn't exist.  Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand.  I would not put Janey or anyone else in the position of having to try to handle this kind of day.

Why do I write about days like this, then?  I write so others living this life know they aren't the only one.  I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me.  There are lots of people living this life.  I write because that's what I do.  I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing.  I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.

But I also write for Janey.  I write because she can't.  I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am.  She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us.  She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing.  She's dealing with a world that doesn't always welcome her kind of diversity.  She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can.  And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.

Fill-In-The-Blanks talking

We've always done a bit of fill in the blanks talking with Janey.  It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...."  We've had mixed results over the years---generally, honestly, not that great results.  But once in a while, it works.  However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough. 

Here's a recent conversation with Janey, with her words in italics.  The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more. 

"A little bit ago, Janey wanted to take a...shower.  But Mama said...yes"

That's something we see a lot in the fill in the blank talking.  Janey gives the answer she WISHES would have been the answer.

"Janey wishes that Mama had said yes.  But really, Mama said...NO!"

My no responses are always told by her as being extremely loud and mean sounding!

"When Mama said no, that made Janey very....angry.  Janey was so angry that she...hit Mama"

Another example there of the answer being what, I think, Janey WANTED to do!

"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit.  Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"

"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride.  That made Janey feel....happy.  And Mama was happy because Janey was being such a good girl"

There she surprised me a bit.  I was going for "Janey calmed down".  I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!

Today is a snow day.  Tony is home as well as Janey.  First thing in the morning, Janey was ready once again for a car ride.  We did a little fill in the black talking after we told her no to that.

"Janey wanted to go for a car ride, but Daddy said...YES!"  

Again, the answer she wished for!

"No, actually Daddy said no.  He said no because outside there is lots of....snow"

We were surprised by that.  We had mentioned the snow, but we weren't sure Janey had made the connection.  It was so good to know she had, that she understood there was a reason for no car ride. 

"Yes, there's lots of snow outside.  And if we drive in the snow, the car might...go smasha-la-rasha!"

It's possible I've used the term "smasha-la-rasha"....

A third great round.  Janey was at loose ends a bit ago, not happy at all. 

"You know, Janey, today things seems a little different, and that can be scary.  Things seem different today because there is no...school"

That was a great one.  I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't.  I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.

After we have a conversation like those above, I've noticed that Janey gets very, very happy.  After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look.  It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know.  It's the look of minds meeting, of a connection without barriers.

It's wonderful to hear what Janey has to say.  And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions.  I think it's because her main speech problem has always been word retrieval.  She knows so much, but getting it out is so hard for her, as is forming sentences.  If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say.  And I love, love, LOVE knowing what she wants to say.

Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

Yes, no, the water---talking and not talking

One of the oddities of Janey's speech is that there rarely seems to be a time when she is using both "yes" and "no".  She'll use only "yes" for a long time, then only "no", then swing back---the idea of having both as an option seems to elude her, or seemed to.  Lately, we are hearing both, and it's wonderful.  "Yes" is still far more common than "no", but there are "no"s now and then.  Janey's teacher told me about one, realizing they are fairly rare.  He asked her to carry a communication sheet to breakfast with her, and she said no.  He was surprised and pleased, and respected the no.

It's interesting to me that what she refused was a communication aide.  It reminded me of a time when I talked to Janey about ways besides speaking she could use to communicate.  That led to one of the most striking and surprising moments ever with her.  I wrote about it here. (link)  Janey told me, clearly and firmly, "I know how to talk".  She said it twice, in a way she very rarely speaks.  That, and many other times she has refused very strongly to use AAC or iPad speech programs or anything of the like, has given me her strong opinion.  I love to know how she feels about issues, and I respect her opinions.  But I do wish I could help her better use her talking to communicate.

Here's an example.  Janey loves to take showers.  Our shower is jury-rigged in such a way that only the cold water works to change the water temperature.  You have to turn the cold water faucet in tiny increments to get the water hotter or colder.  We have it set on the hot water heater so it's never dangerously hot, but it can get fairly hot.  Janey likes the shower almost, but not quite, as hot as it goes.  She has seen from observing how I adjust the temperature.  Since she will often want a shower that's half an hour or more, I get out after washing her hair and just supervise.  While she's in there alone, she constantly tries to fix the water to be just the temperature she wants, and she constantly overfixes it.

When the water gets too hot or too cold, Janey says, every time, "Want to get out?"  And so I hold out a hand to get her out.  And she refuses.  And then I ask "Do you want me to fix the water?" and she repeats that in confirmation---"Do you want me to fix the water!"  And I do.  And then a minute---again.  And again....  The other day, I figured while I was standing around waiting for her to ask for help, I might as well try an experiment in getting her to say what she meant.  I said to her "Janey, you always ask to get out when you mean you want me to fix the water.  When you want the water fixed, can you say 'Mama, fix the water?' or something like that instead?"  Minutes later, of course, "want to get out" And so I played dumb and tried to get her out.  When she didn't get out, I pretended I didn't know what she wanted, and finally, she said "fix the water!"  And for the rest of that shower, she said it.

So---a breakthrough, right?  Wrong.  The next day, we were back to square one, asking to get out.  I reminded her, but this time, she just screamed and screamed.  I finally made her get out.  The next day, she cried before even getting in the shower, and didn't ask for the water to be changed---just stood there in water that had gotten too cold.  In the days since the first try, over the course of about maybe 20 showers, she has once said on her own "fix the water!" Now, when she asks to get out, I just say "You want me to fix the water" and do it.  When she's ready to get out, she gets out without asking.  In her eyes, problem solved.

That's a long example of a problem that comes up over and over.  It's extremely, extremely hard to get Janey to regularly use any new speech.  She KNOWS the words, she CAN say, she UNDERSTANDS them, but she doesn't use them.  She uses a few phrases for almost all purposes. Years and years and years of school speech therapy have not helped to talk more at all.  They have been, I can say pretty strongly, a complete failure in that department.

I don't know what to do about this issue.  I'd be thrilled to communicate with Janey in any way.  If she would use a speech program, or sign language, or typing, or writing, or anything, I'd move heaven and earth to work with her.  But she doesn't want to.  If I could find a kind of speech therapy that worked for her specific speech issues, I'd drive anywhere, pay anything (although our insurance would most likely cover it, IF I could find it) to make use of it.  But I've never had anyone seem to know how to help her use her verbal speech more.

So, for now, we accept what she can say. The shower talk attempt taught me something.  If I know what she means, I will go with that.  It does little good and sometimes much harm to try to force her to speak in a way that more people could understand.  It's more important for me to connect with her than to try to change her way of talking.  Still---there is the bigger world.  There's the thought of her without Tony and me, someday, the black hole, the staring at the sun, the thing we can't think about but which always is there in our minds anyway.  I hope she always finds someone to understand her, and I wish so much I could help her make that possible.

Autism and OCD?

Janey comes to me with the remote, wanting me to put on a Netflix show.  I do, and she takes the remote back.  It gets placed on a closed laptop, precisely in the middle.  She watched a few minutes of the show, and then goes over to the remote to adjust it, to make sure it's in exactly the right place.  A few more minutes of watching, and she goes to where her shoes are.  She's previously arranged them as they always must be, left on the left and right on the right, lined up exactly next to each other.  She looks at them and does a little adjusting.  Then she touches the corner of the coffee table, then the wall in a certain place.  She looks at me.  I've broken a rule.  My legs are crossed.  She patiently takes my feet and moves my legs to the right, non-crossed position.  Then she watches a bit of her show, and then it all starts again.

Janey has never been formally diagnosed with OCD, Obsessive Compulsive Disorder, but I am quite sure she has it.  I have more than a passing knowledge of the signs.  

I've had OCD as long as my mind goes back.  It's been well under control for many years now.  It never goes away, but it affects my life very, very little.  Still, I well remember what it was like.  There are several types of OCD.  Mine was a checking one.  I needed to check that things were where they should be---my keys in my pocketbook, my pocketbook hung up.  When I was little, it was bookbags, or stuffed animals, or even little rocks I'd collected.  Checking once was no assurance.  I'd have to check over and over and over---sometimes hundreds of times.  

Janey's OCD seems to fall into the arranging/symmetry category.  She needs things to be in the right place.  Not all things---she's as much of a slob as the rest of us with most things---but certain things, like her shoes, must be just right.

If you are even interested in learning more about OCD, I recently read a fantastic book about it---The Man Who Couldn't Stop, by David Adam.  It's a personal account combined with the science and psychology of the disorder, and it was one of those books which gave me about 20 "That's exactly how it is!  Now I get it!" moments.  It was terrific.

Thinking about Janey, I am quite sure I first saw the signs of OCD in her long before the autism.  As soon as she could use her hands, maybe at 7 months or so, she would move my hands to the place she wanted them to be, to hold things symmetrically.  Even that young, crossed arms or legs bothered her.

OCD is strange in that it ebbs and flows.  Years can go by with it barely showing its face, and then it pops back up badly.  Lately, it seems to be at a high level with Janey.  It's interesting---it doesn't seem to distress her a lot.  When she does the arranging, it's with a huge amount of patience.  It's like a job that must be done, hundreds of times if necessary, but with good will.  Much of what is usually distressing about OCD is that you understand what you are doing would be considered crazy by most.  When I was checking something for the 100th time, I was telling myself "STOP IT!  You KNOW it's there!  What is wrong with you?"  Maybe Janey doesn't have that inner voice telling her anything like that.  Sometimes, the OCD rituals seem to calm her.

There are times, though, that it must be awful to need something done a certain way and not be able to communicate that.  Lately, after a shower, I am not drying Janey's hair the way she feels it should be dried.  From what I could figure, I used to dry her hair some specific way, while saying "Let's dry-za-la-high-za!"  I say a lot of little things like that, as I think most people do when talking to someoen who doesn't often talk back.  We tend to want to fill the silence.  But lately, I'm somehow not saying it right or drying in the right sequence.  Janey gets very upset.  She grabs my hands and pulls then with the towel onto her head, and screams "DRY-ZA-LA-HIGH-ZA!" over and over.  

The other night, after a long round with the towel, I told Janey about OCD.  Like with so many things, I have no idea how much she understood, but I told her that I know how it feels, that I've felt the same thing.  I talked to her about the shoe arranging, the remotes, the crossed legs, the drying.  I said her mind might tell her that bad things will happen if she doesn't make sure everything is in the right place, but that's her mind playing tricks on her, silly mean tricks.  I told her I understood.  She looked at me for a long time, one of those uncommon looks of connection.  I don't know what she took in, but I hope it helped, a little.

It doesn't seem fair.  If Janey does have OCD, why must she deal with that in addition to everything else?  But of course, as the classic saying goes, life isn't fair.  And in a small, strange way, it's a connection with Janey, a part of her I share, sometimes I can maybe help her with.  I'll keep trying.

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.

One Afternoon

Janey gets off the bus with manic excitement, something I've learned over the years to be a little wary of.  She runs into the house, dropping her coat and hat and backpack as she goes, and dashes to the refrigerator, pulling out cheese and pesta and ketchup, and yells "Cheese, please, cheese!  Want to pour ketchup!  Pesto, please!"  I fix her multi-course snack, and she eats.  Then she asks for Angelina Ballerina.  I hold my breath as I put it on, and sure enough, after about two minutes, she starts screaming.  She stomps her feet and bites her arm.  As I walk over, she lunges toward me, teeth first, not exactly biting but hitting my chest with her teeth.  I pull away and say as calmly as I can "The TV is making you upset.  I am going to turn it off"  She flings herself onto her bed, screaming loudly.

I stop, take a breath, try to not fall into a useless despair.  I remind myself she hasn't had a mood this bad in a long time, probably a few months.  I tell myself to be patient, to stay calm.  I get on the bed with her and say "You seem very, very angry"  She screams more.  I pick up a few of her stuffed toys, which she never touches, and make them say "I am so angry at you, Mama, for turning off the TV!  I'm VERY ANGRY!"  Olivia Doll says it, Angelina Doll, Kitty Doll.  Janey watches for a bit and then repeats "I'm very angry!"  I rush to praise her.."Great talking!  You told me how you are feeling!"  She grabs my hand and bends my fingers backwards, while kicking me.

I get off the bed and say "I can't be on the bed with you if you are hurting me"  I walk away, keeping her within sight.  She screams and flails around.  Then she screams out "Want to watch Hercules!"  I say "I can't put on the TV until you are calmed down"  She screams louder.  I say "Would you like to take a shower?"  At this point, I'm counting the seconds until Tony gets home, and thinking how a shower would kill some time.  She screams back "WANT TO TAKE A SHOWER!" and so we do.  I don't get in with her, not feeling like being bitten or hit.  I sit in the bathroom and hope she wants a long shower.  She fiddles with the taps and makes the water too cold.  I fix it, and remind her not to touch the taps.  She does it again.  I tell her next time she'll have to get out.  She makes it hot and yells "FIX WATER!"  I get her out.  She is furious.

We go in the living room.  She says "want to watch SpongeBob?"  I ask her if she can calm down.  She responds by taking a deep breath.  I put on SpongeBob, unsure as so often if I'm doing the right thing.  She watches for a few minutes, and then punches the TV and screams.  I walk toward her and she lunges to bite me.  I block her.  I am out of ideas, out of patience.  She goes back on her bed, screaming.  She asks for the iPad.  I give it to her, and sit out of biting range.  There are ten minutes until Tony gets home.  She plays with the iPad for about 5, and then asks for cheese again.  I cut some for her.  Two minutes until Tony.  She asks for the TV.  I say no.  She screams and tries to put it on herself.  I hear Tony coming in.  I tell her Daddy is home.  He walks in the door and asks how things are.  I say "hellish"  I tell him I'm going to the store for a minute, and I leave, shaken and tired.

To the others out there living this life---how are we going to make it?  How are we going to get through the rest of our life that's like this? How can we help the kids we love so very much?  How can we keep them safe while keeping ourselves safe?  What are we going to do?

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

Happy Mother's Day---Autism Style!

I woke this morning feeling good, feeling hopeful after our good clinic visit, feeling like it was going to be a good Mother's Day.  I spent some time in bed reading, and then called my own mother.  We had a good brief chat, brief because Tony called me after a few minutes to get off the phone and help him with a "pull-up incident", the lovely kind that involves washing all the bedding and giving Janey an immediate shower.  We dealt with that, and then I decided to do dishes.  They had built up in the sink.  To make doing the dishes a treat, I put on my guilty pleasure Pandora station, my Barry Manilow station, which I have modified by using the thumbs up and thumbs down feature over the years until it plays only songs I love when I am in the mood for guilty pleasure songs.  I rocked out a bit to "Sometimes When We Touch", "Don't Give Up On Us Baby" and "I Wanna Make It With You", and then Tony and I had a cup of coffee, at least until Janey came in the room and we realized we must have missed something in our survey of the bed area, because she was again covered with...you get the picture.  So I gave her another shower, got her dressed again, and sat down with my now fairly cold coffee to write this.

And this morning so far, looking back on it, is a good slice of the Autism Mother life.  We get our fun where we can.  We enjoy the little moments, because we don't have the time or energy for big moments.  We take the days as they come, for the most part.

We are the mothers that will probably never get spontaneous cards or presents from our girls with autism.  We will get sweet cards the school makes up, or our husbands make up, but our girls are unlikely to go out and ever get us a present.  They might say "Happy Mother's Day!", if they are verbal and if they are prompted, but that's about it.  In many ways, being a mother to a child with autism is literally a thankless job.

However, we have our little moments.  We have the times our girls do something we never thought they would.  We have the moments when we look at them and think "What a beauty she is becoming"  We have the moments when we realize they are never going to scream at us that we are the worst mothers on earth, or demand to wear the latest styles, or run off to join a motorcycle gang.  They are going to be our girls for life, most likely, and while there are days (many days) that is incredibly hard, even tragic, there are other days, or maybe moments, when we can take comfort in that.

We aren't chosen.  We aren't saints.  We aren't heroes.  We are picked by chance.  We are members of an exclusive club, one most people would not join given the choice.  However, my years in this club have led me to feel we are, for whatever reason, a pretty cool crew of woman.  So here's to Michelle, to Sara, to Jamie, to Melanie, to Abby, to Rebecca, to Autumn, to Janelle, to Ewa, to Becky, to Claire, to Audrey, to Laura, to each and every one of you, every mother who is part of this club.  The happiest of Happy Mother's Day!  Grab a cup of coffee and let's have a toast to us!

A Parenting Book for One

One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work.  They don't cover kids like Janey.  They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect.  They assume a child is motivated by praise, and that a child's actions have external stimuli.  They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people.  They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.

I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey.  I've written it in my head.  But I'm going to gradually post it here, bit by bit.  I do this because perhaps some parts of it will also apply to other children a bit like Janey.  But I caution---much of it won't.  Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.

Today's chapter---how to calm Janey down when she has an outburst.  I should say, how to MAYBE calm Janey down, as very often, you simply can't.  But a few things sometimes work.  I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.

1.  Food..  Often, when she's upset, she's hungry.  She doesn't seem to make this connection.  And her hunger, like so much of her, seems sometimes out of the blue.  She can have eaten a lot already, and still be very hungry.  We have learned to quickly get some food into her if she is starting to escalate.

2.  A shower.  Janey has taught us this one herself.  The most common thing she asks for when upset is a shower.  The warm water streaming down seems to calm her immensely.  We let her stay in the shower as long as she wants.  I sit in the bathroom with her and read.  The one has the added benefit of getting her away from the rest of the family, so they can have a little break.

3.  Turning everything off.  If Janey watching TV, or if music is playing anyplace, we turn it off.  We often have to unplug the TV so Janey doesn't turn it back on.  We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.

4.  Covering Janey with blankets.  If I can, I get Janey on the bed and cover her up.  Like many kids with autism, the pressure of the blankets seems to help a good deal.

5.  Repetitive soothing touch and sound.  I will often massage Janey's feet with lotion.  While doing this, I'll sing a song, something mellow and quiet, over and over.  Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."

6.  Backing away.  If Janey is still upset after all this, I've learned lately I need to just get out of her way.  I don't want to be hit or bitten or have my hair pulled, for several reasons.  One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation.  So sometimes, I just walk away, and let Janey rage.  If she follows me, I keep moving.

7.  Nothing.  When Janey is truly agitated, nothing helps.  Nothing at all.  All that can be done is to wait it out, sometimes until she falls asleep.  Doing anything at all makes things worse.  So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background.  This is the hardest one for me to do.  I want to help Janey, but sometimes, there is no help.  She needs to just get through the episode on her own.  Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.

As you might guess, it's been a long morning here.  I have used all these techniques and am now, in writing this, on step 7.  It seems to be working a bit.  Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me.  Merry Christmas Eve Eve.