"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

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.

Summer school and some thoughts

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

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

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

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

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

The first week of school

Janey has finished her first week of school, and so far, pretty much so good.  The start of school is almost always a good time for her.  She has a honeymoon period every year, where I am sure her teachers think "This is the girl I've heard so much about?  She's a piece of cake!"  Things often start collapsing around mid-October.  I feel like I'm being negative to say these things, but the pattern is pretty unmistakable.  But we do enjoy these early weeks!

The bus comes around early, around 6:30.  Janey's sleep hasn't been perfect.  Last night and 2 nights ago, she woke at 3, never to go back to sleep.  It is amazing how she never seems bothered by that lack of sleep, whereas Tony and I are very much bothered by it.  She seems to wake in the same mood she went to sleep in, and she's been cheerful lately, so she wakes up cheerful and ready to start the day, oblivious to the fact it's dark out and her parents seem oddly unresponsive.

Janey's school runs a little longer this year than last, as they have added 40 minutes to the school day.  She get home on the bus around 3.  So far, she's hopped off the bus in a good mood, which is always nice.  Her first act after getting home is to fling herself on her bed, and the next is to take off her shoes and socks.  Then, she eats.  She eats and eats and eats.  She gets school breakfast and lunch, but she doesn't much like them.  We've tried sending in food, but she never eats that either, and in Boston, school food is free, so we figure she might as not eat free food as paid for food.  But she gets home hungry.  It's amazing how much that girl can put away and still stay slim.  She's gained back the weight she lost being in the hospital, but she's still quite slender, despite eating like a sailor.

The one problem so far this year was a report on Friday that she had hit the bus monitor the day before.  We think the issue was that they put her in a seat next to another kid, not by the window.  Janey loves almost any length of car or bus time, as long as it keeps moving and she can look out the window.  It's a testament to what you can get accustomed to that we didn't get really that upset about the hitting report.  I don't want her hitting anyone, but we have learned as the years go by there isn't a lot we can do to stop it.  We of course tell her over and over that she can't hit people, and she can recite that back with a voice that sounds sincere, but when the urge hits her, she hits.  The best we could do was to tell the bus people that a window seat would be best, and they listened and are now putting her by the window.  I think everyone learns after a while with Janey that it's often a lot easier to modify her surroundings than her behavior.  I feel like this summer, we finally really learned that lesson ourselves.

Janey doesn't tend to learn anything academic at school.  I have pretty much accepted that.  It's not for lack of trying, and of course, who knows what she is picking up and not showing that she is?  If she is happy at school, the truth is I honestly don't care if she learns academics.  What I do care is if she is frustrated trying to learn things she just can't learn.  I have more doubts about ABA all the time, in Janey's particular case.   I don't think it's worked for her, in just looking at what programs she was being taught at the age of 4 and now at 11.  They aren't much different.  She is not motivated by ABA, or by any rewards she is given by it.  If she wants to know how to do something, she learns it near instantly.  I showed her only once or twice how to push the "3" on the TV remote to get it on the right channel for videos.  She shows no sign of knowing which numeral is which under normal circumstances, but boy, does she know that 3.  She knows which song is on which CD in the car, and what order they are in, and the lyrics and tune for every song, I truly think, that she has ever heard.  Those are the things she cares about.  I wish I could make her care about learning to read, or, as I sometimes suspect, make her show that she already CAN read, but, and I am seeing a theme here, you can't make Janey do a lot she doesn't want to do.

So, another school year has started.  It's strange, with Janey the only child home, but otherwise, it feels pretty familiar.  My main hope for the year is no hospitalizations of any kind---that Janey can attend school all year without interruption.  I think that's a reasonable goal.  As the years go by, we become more rooted in reality.  Acceptance isn't just a catch word, it's the only real way to stay sane, I think.  We accept that Janey is who she is.  We try to respect who she is, and work with who she is.  Like with any child, we rejoice in parts of her personality and despair of others.  Trying to change a child, a person, any child, any person, is an exercise in futility.  That's the biggest piece of knowledge being a parent of three very different, very intense, and very cool kids has taught me.  Work with what you have, and love them as they are.

With just a little editing....

Janey, Freddy and I went up to Maine to visit my parents for four days, last Saturday through Tuesday.  My parents live in midcoast Maine, where I grew up, and I hate to have a summer go by without visiting there.  There is something about the summer in Maine that simply can't be found anywhere else, and I want my kids to know a little of that, especially this year Freddy, as he heads into adulthood---he will start college in eleven days.

Janey and the chickens

How did it go?  Well, with a little editing, it went well.  I got to show Freddy a lot of the places that I loved growing up, and he got to spend a lot of time talking with my parents.  Janey loved running around barefoot outside, talking a long walk with Grampie, singing along while Nana played the piano and running around after my dear friend Julie's chickens.  I got to take a lot of deep breaths of Maine air, and of course I took too many pictures, literally over a thousand.

What gets edited out?  Screaming, mostly.  Janey had many, many screaming spells.  They came on suddenly and often without any reason we could figure.  They were intense and overwhelming.  My parents live on a back dirt road, but they do have neighbors, and luckily, they had talked to the neighbors about Janey, or it well could have been thought something awful was happening to her.  The most severe editing dealt with a drive we took up Mt. Battie.  Mt. Battie is really a hill, but it has a view worthy of any mountain on earth, of Camden Harbor and all kinds of islands.  I wish I could have enjoyed it for more than a few moments, but something there triggered Janey and she flipped out and was hysterical, and bit me pretty hard.  We left fast.  Later on that drive, she did all she could to bite and hit Freddy, next to her in the back seat.  It took both our strengths to keep her from hurting him.

The briefly seen view from Mt. Battie

Janey, Nana and Grandpa

Freddy and I can look back on the trip and feel pretty good about it.  I'd say 80% of the time, Janey was fine, and sometimes, she was more than fine---she was a delight.  But that 20%...I don't think much of anyone except someone who has lived this life for a while could edit it out as we do.  My parents did a very good job with Janey, but they were shaken.  Like many people who see Janey's intense moments, they wonder how it's possible to keep going.  They worry about her safety and our safety.

So---is editing a good idea?  Should we do it?  The question is more if we could stop doing it if we wanted to.  If I thought all the time about the awful moments....well, at the very least, I wouldn't enjoy the good moments.  I have to edit in my mind.  I have to think about Janey's delight running after the chickens, the fun of hearing her surprise my parents with yet another song she knows, the wonderful moment when she saw Daddy again and said, confused about the exact terms, "It's your brother Daddy!"  Reversed pronouns and muddled relationship names aside, her voice showed how she felt.

We can edit, and can be left with memories of a good trip.  But the larger world can't be asked to do the same.  And more importantly, I don't know if Janey can do that editing.  How does she remember things?  Does she remember the good times, or remember the scary, out of control times?  How would she tell me she felt about our time in Maine, if she could?  I don't know.  I really don't know.  I hope she would understand that we are trying hard to give her a good childhood, and that we are doing our best, and that we would do anything within our power to ease the tough times for her, if we knew how.

On looking for positives, medication and feelings

Yesterday, the positives were a little easier to find.  They still took some mining, but not quite the all out intensive mile deep mining operation they had the few days before.

The change, and I hate to admit this was the change, was that we put Janey back on her medication.  Tony took her to her psychiatrist on Tuesday night, after things just getting close to completely unbearable with the screaming and aggression, and we got the okay to put her back on the two medications she'd been taking for a while (not the new one she took before getting sick)  I hated to do it.  But it's not about what I hate.  It's about Janey, and she certainly showed us that once she felt physically healthy again, she needed that medication.

What the medication does it make it possible to actually try other ways to help Janey---to calm her down just enough so that we can use other methods along with the medication to keep her happy.

Yesterday was a long day, still.  Janey, although screaming much less, still was doing her routine of asking to go to Maryellen's house, over and over.  Toward the end of the afternoon, she hit me when I said no.  She did this after seeming to think about it a moment, like she was thinking "Hmm, maybe a good slap in the face is what Mama needs to understand me.  I'll give it a try!"  There was that much of a delay.

I decided to try a little dialogue.  I said "Ask me again if we can go to Maryellen's house, and I will say no"  I didn't want to set her up to think I might say yes.  She asked again, and I said no, and then said immediately "Now you say 'I feel ANGRY, Mama'"  She said it, and I immediately did the whole positive routine---the high five, thumbs up, A-Okay, with a big hug and praise.  I then did the routine over again, about 10 times.  She loves routines and repeated speech, and she loves the praise bit, so she enjoyed it.

Then she surprised the heck out of me.  Around the 11th time we did the routine, instead of saying "Angry", she said "Sad"  I was truly taken aback.  I hugged her over and over and said "You feel angry AND sad!  Great job talking!"

I decided the time was ripe for some more feelings talking.  I had her guess my feelings, something that is very tough for her.  I made a very angry face, telling her beforehand I was going to, because I didn't want her to think I was really angry, and then I asked her what the face was.  I had to prompt her a lot to get her to say angry.  I did the same thing with sad.  Then happy, and she guessed happy much more easily.  In fact, she often said "happy" for sad or angry, which makes me wonder if she is confused about how people are feeling a lot of the time.

She gave me another surprise.  I asked her to make the faces.  She can't do angry or sad on command at all, although she can do happy---maybe because she WAS happy right then.  I was thinking she really didn't get making faces.  But then I asked her to do surprised.  I showed her a surprised face---no luck.  Then I said "Surprised faces have very wide open mouths.  Try surprised" and she did---perfectly.  I should have known.  She is so auditory.  A face that can be explained in words is so much easier for her to understand.  It made me feel a wave of sadness at how hard it must be to be that auditory but to have such a very hard time talking.

I hope today is again a calmer day.  It's been a long stretch here waiting for summer school to start.  It finally starts Monday, and I have to admit I'm looking forward to it like Christmas.  I kind of bet Janey is too.  We've had enough of each other, but I do hope we will end this long sickness/summer stretch on a slightly higher note.

Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

We were so hopeful a few weeks ago.  Janey was off all medication, and we really saw no change from when she was on it.  She was smiling a lot, and recovering slowly from her surgery and hospitalization.  But starting about a week ago, things went quite strongly downhill.  

The screaming has been the toughest thing.  Janey has always screamed off and on, but lately, it's a different kind of setup.  Things will seem calm for a few minutes, then she will ask for something she wants.  If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream.  Then she bites her arm, badly.  Then, sometimes, she tries to hit me, or anyone else who is around.  

In looking for positives, I must say these episodes are pretty quick.  They are super intense, but fast.  They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no.  And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting.  She does try, and she does calm down.  For a few minutes.  Until the next fit.

The screaming has essentially trapped us in the house.  We can't take Janey anyplace at all.  Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years.  It was always a positive routine for the two of them.  However, after they had picked out just a few items, Janey did her extreme screaming and arm biting.  They had to leave.  If you are thinking "Oh, lots of kids have tantrums in stores.  You just have to wait them out!" then you have never seen Janey's screams.  They are the screams of nightmares, and the arm biting is an added touch of horror.  Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.  

Yesterday was one of the longest days I've ever had.  Tony and both boys were at work.  Janey was not happy.  I would say she had a screaming episode about every 10 minutes, all day long.  I tried everything.  I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her.  She wanted to "Go to Maryellen's house!"  She loves Maryellen, but if we actually go there, she is happy for about 5 minutes.  And then, when we leave, on the way home, she again says "Go to Maryellen's house!"  It's just something to ask for.  It's not really what she wants.

Janey hasn't been to school for a long time, since late May.  That's probably one of her longest stretches in years without school.  Summer school starts Monday.  I am hopeful it will help, but not confident, really.

We started the medication again today.  We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.

It is getting harder and harder lately.  I have to admit it.  I sometimes truly feel scared, and I know I feel depressed.  I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her.  However, although I certainly like having someone to talk to, it isn't going to change the situation any.  I am more and more aware there is not any help but school.  It doesn't exist, not for kids like Janey.  

I will mine for positive at the end here.  I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing.  I think it came out not badly for a completely non-professional haircut.  Now a quick brush is all she needs.  It's little tiny things like that that are all we can really do to make our lives easier.  So here's a picture of Janey's new 'do!

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits again...it's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.

Autism on the Airplane and the questions it raised for me

By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown.  If you haven't, here's a link.  I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well.  I'm not going to give an opinion there, because I don't have one---I wasn't there.  I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group.  Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.

What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.

If Janey is having a severe meltdown, she is very capable of hurting people.  And she has.  The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers.  If I ever have a worse moment than that, I hate to think what it might be.

We don't always have a warning that Janey is about to melt down, or much of one.  And even if we do, we can't always fix the situation that is causing the meltdown.  I do feel a responsibility to the people around Janey to keep them safe.  So---what does that translate to?  Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out?  If this is the solution, Janey wouldn't go to school.  She wouldn't go to stores.  She wouldn't go anyplace.  I can't feel, right now anyway, that that is the correct solution.

How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten?  I think I have a responsibility to take reasonable precautions.  I would not let Janey run around free at a playground full of smaller children.  She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids.  If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids.  When Janey is out of the house, she is under the direct supervision at all times of an adult.

So, what if I got into a situation with Janey like the one on the plane?  What would I do?  I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying.  I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying.  I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did.  What do I do?

I don't have an answer to that question.  I'd of course try to keep her from hurting anyone.  I'd try to calm her down.  But she would attract attention.  It would be a scary scene.  I don't know what I'd do.  I really have no idea.

Most kids with autism are NOT like Janey. She is not the majority.  But other kids like Janey do exist, to be sure.  And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out.  It's a question I personally need to figure out.  Janey has much to offer the world.  She is amazing in so many ways.  But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.

Surprises during the storm

The last few weeks have been tough with Janey (why do I feel like that's a common opening line when writing this blog?)  She's doing a lot of crying, screaming, hitting and self-biting.  She just doesn't seem very happy, and reports from school say she's the same there.  She isn't sleeping well (she's up right now at 10:20 pm, but using her iPad for a minute or two) and we are pretty worn out and quite discouraged.

However, the last few days, Janey has surprised me quite a few times with things she's said or understood.  Sometimes, she seems to break down during a learning time, like the greater knowledge or realization leads to her being upset.  I wonder if that's the case now.

Yesterday, Janey came home from school in a state.  She was hitting me over and over.  An email from her teacher told me she'd hit some kids at school, too.  I was feeling near the end of my rope.  I decided to try talking to Janey seriously, assuming she understood me.  This is something I try to do more often lately, although it's often very unclear if Janey does understand me or not.  This time, I told her she really, really needed to try not to hit people or bite people.  I asked her if she remembered last fall when we went to the hospital and then the "hospital-house" (which is what we have called Bradley Hospital, the psychiatric hospital she was in for about three weeks)  She didn't answer.  I said "Do you know why we took you to the hospital?"  I didn't expect an answer, but Janey said "You were biting your arm" (reversing her pronouns) and demonstrated how she bites her arm.  I was very surprised.  That was one of the issues---her increasing self-injury.  I've never before been sure Janey even understood that self-biting was something that was a problem, and I gave her a big hug and told her I hoped she would not hurt herself in the future.

Today, I offered to take Janey and Freddy to Chipotle, as Tony was at his high school reunion.  Janey was excited to go, but had a few minutes before done her Lady Godiva routine.  She put on her Crocs and said "Go in the car?"  I said "Can you think what you need before we can go in the car?" and she answered right away "Clothes!"  I was so happy.  My wording of the question was not completely straightforward, but Janey understood both what I was saying and what the answer was.

Freddy went into the Chipotle to get our food, and there was quite a line, so I was left to entertain Janey in the car for about 20 minutes.  I started asking her questions, kind of to see if she was still on a roll.  She was amazing.  First, we did counting, alternating between us with the numbers, and she easily caught on.  Then, I said "A...B...C" and with just a few times jumping in with a letter, she recited the alphabet perfectly.  I then said "Some people are girls, and some people are boys.  Janey is a...." and she filled in eagerly "Girl!"  I said it again the same way replacing "Janey" with "Freddy", and she said "Boy!"  Then I got fancy.  I said "Our sun has lots of planets.  It has Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus and...." and Janey, without missing a beat, said "Neptune!"  I was blown away---truly blown away.

I think Janey knows much more than she ever lets on.  Part of figuring out what she knows is asking in exactly the right away.  She does much better filling in blanks than just answering questions.   Her mood makes a huge difference, too.  She was calm and happy in the car.  However, she wasn't when she gave me the answer about the hospital.  I think in that case, talking to her at a level beyond what I usually do made her reflective.

Sometimes, seeing glimpses of what Janey can understand and what she knows almost makes it harder.  I feel heartbroken when I think of what is trapped in her while she screams and hits and yells and bites.  I wish so much I could help her be all she is capable of being in a way that works better than whatever I am doing right now.

What to do about hitting???

I'll start by saying that from what I've read, the majority of kids with autism are not aggressive.  By saying that Janey is, and that her hitting and other aggression are becoming a big problem, I'm not saying that's a trait most kids with autism have.  However, some do.

I say this because I think there's a reluctance in the autism community to really talk about aggression.  We don't want our kids with autism labeled as being aggressive.  I can understand that.  But for those of us with kids that are indeed prone to acting out aggressively, talking about it openly is important.

Janey lately has taken to hitting me whenever she is denied something she wants.  As you could guess, that means a lot of hitting.  Any request that's reasonable and do-able, I do respond to positively.  However, as anyone whose ever had children knows, not all requests are like that.  When Janey wakes at three in the morning and wants to go to the store, or when she decides she wants to wear a bathing suit to school, or when she wants to watch her TV show during the one hour of the week that Freddy is watching a show, or when she wants Daddy to come home immediately in the middle of a work day---well, we can't always say yes.  And more and more, our saying no is met by her whacking me hard in the face.

The problem with almost all methods I've seen cited for dealing with hitting are that they assume two things Janey doesn't really have---impulse control and an understanding that other people have feelings.  I can say firmly "No hitting.  That hurts me."  Okay, but for that to do a bit of good, Janey has to be able to think before she hits, and she has to care that she hurts me.  At this point right now, both of those are beyond what she can demonstrate.  I'm not saying she can't control herself at all, or that she has no compassion.  I'm saying when she is angry, whatever amount of control and compassion she does have are out the window.  When she is calm and  happy, she might be able to use some self-control and to be very sweet and caring toward me, but when she's calm and happy, she's not hitting.

The other big theme I see often used in talking about dealing with aggression is to figure out the cause, as if somehow doing that will fix the problem.  Well, in most all cases, I know the cause.  The cause is being told no.  It doesn't take rocket science to understand the cause of Janey's aggression when she says "Want to go to the ice cream store!" and I say "Not right now" and she hits me.  I don't think there's a hidden reason or a lack of communication there.  She states plainly what she wants, I saw no, and she hits me.

So---how do I deal with this?  For now, what seems to work best is a riding out the storm method, a "least said, soonest mended" kind of thing.  As hard as it is, I try to react minimally to being hit.  If I show pain or anger, that escalates everything.  Janey is hugely responsive to tone of voice and to the mood of a room.  So my natural instincts, to scream "STOP HITTING ME!", put things into a state where it's very unlikely Janey IS going to stop, or going to understand why she should stop.  If I can walk away, ignore her as much as possible and try to as quickly as possible get things back into a good mood state, the net results seems to be a reduced amount of hitting.

However, it's not always possible to stay calm.  Janey is getting bigger all the time.  Her hitting isn't just a nuisance---it hurts.  It hurts a lot, and as she gets bigger, she is going to be able to do serious damage.  And even if I somehow are able to remain calm, I can't expect the larger world to do the same.  I get the brunt of Janey's hitting, but she's certainly been known to hit her brothers, and occasionally, kids at school, teachers and staff and more.  How can that be dealt with?  Frankly, I just don't know.

I don't enjoy writing about Janey being aggressive.  I wish more than anything that the whole issue would just go away.  But I don't think it's fair, to me or to Janey, to pretend that it doesn't exist.  As she gets older, more and more I am going to need help with this.  I'm going to need help to physically stay safe, and keep Janey and others safe, and by being honest now, I hope I can help us, and others with kids like Janey, get that help.

Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

World Autism Acceptance/Awareness Day, through my own Janey lens

Well, here it is again, that day that I am sure is like Christmas for all of you out there---World Autism Acceptance/Awareness Day!  All sarcasm aside, sometimes I'm a little glad there's a day of the year set aside for autism---a day that is about what every single day is about for my family and me.

I thought I'd write about Janey's afternoon yesterday.  It illustrates the best and the worst of how autism affects Janey, and therefore affects our family.

Pictures I took this morning of Janey

Janey got off the bus in a fairly cheerful and mellow mood.  She was happy to find some chips to eat, and we had a quiet and companionable half hour as she ate them next to me.  Freddy got home then, and Janey was happy to see him.  Her hands were covered with chip dust, and he said if she washed them, he'd take her to the ice cream store, as she had asked (as she asks every single day after school).  After a few reminders, she washed them like a champ, and he kept his promise and took her to the store.  They both came back in great moods.  Freddy remarked on how very good she was, and how much fun they had.  The ice cream store (as most of you know, actually a corner convenience type store) is only a few houses and then a few businesses away from us, on the same side of the street, and now as we pass our neighbors' houses, we no longer have to hold Janey's hand.  She loves that---she skips along singing.  We take her hand again by the gas station, as Freddy did yesterday.  It was great seeing what a good time they both had, and Janey ate her ice cream happily.

A nice moment before they left---after Janey washed her hands and Freddy told her he'd take her to the store, she hugged him---her full-on, somewhat overwhelming hug.  Freddy was quite touched.  She is gradually showing more and more of an interest in her siblings, and it was really a nice moment.

Taken within three minutes, they show her changing moods.

So---great afternoon, right?  Well, then it took a turn.  Janey decided to graze the refrigerator for something more to eat.  She found raw turkey meat.  Freddy caught her in time and told her to put it back, and when she came over to sit by me, I said "Janey, you know we never eat meat that hasn't been cooked"  Evidently, that was something she found unacceptable to hear.  She hit me on the nose, very hard.  I grabbed her hands and said "No you don't!" and she lunged hard at me, trying to bite me with all her might.  I yelled to Freddy for help, and he carried her away to a chair and held her back as she tried as hard as she could to bite him too.  Being unable to do that, she kicked over a coffee table by the chair, with Freddy's afternoon coffee on it.  It spilled all over the floor.

Freddy told her, very calmly, that she needed to clean up the coffee.  And so started the 20 minute siege.  She was not inclined to clean up the coffee.  She wanted instead to bite Freddy.  He stayed calm and insistent, telling her to go get the paper towels, which she finally did, after about three biting attempts.  Then, again interrupted with many, many lunges at him, she very, very slowly did clean up all the coffee and threw away the wet paper towels.  By the time that was over, we were all exhausted.  Janey got her iPad and sat quietly and cruised YouTube.

It's not all smiles, so we take them when we can!

And that is Janey---albeit, a rather extreme example of Janey at her best and worst.  That is what we are aware of every day.  That is what we have leaned to accept.  Sometimes it's very easy to accept Janey.  Sometimes, it's very, very hard.  And as I talked about yesterday, accepting doesn't mean liking always, or not liking, always.  Sometimes it means adoring.  Sometimes it means despairing of.  But if I could tell the whole world about autism, I would like them to understand both sides of it.  I don't want a gauzy unicorn and rainbow filled fantasy autism image.  I don't want a horrifying, Autism-Speaks-Style tragic view of autism.  I want people to know Janey, and to know all of your girls and boys, all the many, many faces of autism.  I want them to know the stories, and to know the children we love so much.  Janey, this day is for you.  I love you so, so much.

Trying to give Freddy one fair afternoon

Lately, I've been thinking a lot about sibling issues and autism.  I think this has been triggered by the realization that next year, Freddy will be in college.  Of course, I saw this coming, but now that he's gotten some acceptances and some good financial aid, it's hitting me as reality.  And I've been thinking about how very often, Janey's needs come before those of her brothers.

Our family setup is such that it's often come fairly naturally to put Janey first, or it has seemed that way.  She's seven years younger than Freddy to the day (Freddy doesn't even get his own birthday!) and ten years younger than William.  She's the only girl.  So she's been set apart in the family, not just by autism but by relative age and sex.  And to be honest, I think sometimes the boys have half liked it that we couldn't focus on them as much as many parents.  Teenagers, although they do still very much need parents, sometimes like having a little more independence than some of their peers.  But so much hasn't been fair to them.  I know there are compensations, and I've read and agreed with so many articles and blog posts about the benefits to siblings of having a sister or brother with special needs.  However, I sometimes very, very much wish I could give them all the attention and resources they deserve.

Janey and Freddy

This afternoon, I decided on the spot that for once, I would put Freddy's needs first.  There wasn't anything special about today, except that every afternoon Freddy has left being in high school and living at home is special.  I wanted to let him be the sibling that got the attention.  Well, that wasn't easy.

The first test---Freddy and I decided to watch last night's episode of "The Voice" on Hulu.  A friend of his from school is on the show right now (go, Nathan!) and we knew he'd advanced, and we wanted to see his performance.  Janey had other ideas.  She kept trying to turn off the TV, succeeding a few times.  She whined non-stop..."I want Kipper!  I want Barney!  I want Olivia!"  mentioning every show she could think of, in hopes we'd give in.  And so many times---we do.  It becomes just not worth it to listen to her when we are trying to watch something.  But she actually likes The Voice, when she will watch it.  She likes dancing to the songs, she likes the singing.  And even if she didn't, I was determined to watch with Freddy.  We did see his friend's part, but after that, we both gradually drifted away.  It wasn't worth the fight to see the rest.

Next, I wanted to help Freddy pick classes to sit in on during a visit at a college he's been accepted at next month.  I love things like that.  I LIVE for things like that.  He got to list 3 choices from a long list of classes for both morning and afternoon.  I would have loved to sit there for hours, looking up the classes, discussing the options and just enjoying the whole process.  But again, Janey had other ideas.  After just a few minutes, she decided she wanted to go to the ice cream store.  I said no.  She repeated the request, with growing impatience, over and over and over.  I wasn't giving in.  Finally, she hit me in the face and bent my fingers back.  I felt close to tears at that point.  Couldn't she ever, EVER just for a little, short while, understand no and accept no?  And the answer is..no.  No matter how often I stand my ground and don't give in, it seems to make no difference.  Once she has an idea, a want, that is all that matters.  I did get through the choice process with Freddy, but in a hurried and not enjoyable way.

Tony came home after that, and took Janey for a ride for a while.  You might think---why didn't I just save everything with Freddy for that time?  If you are asking that, you probably haven't had teenagers.  You spend time with them when they are up for it, or not at all.  That's one of the reasons, but the other is that I just felt tired of always, always having to say "Wait until Daddy can watch Janey.  Wait until Janey is asleep"  Sometimes, I want Janey to be the one to wait.

Later, Freddy wanted to watch "Star Trek Voyager".  Tony was home, and usually, Janey will tolerate that show.  For part of the time, she did, but then she decided I needed to snuggle with her.  This is often how she gets to sleep, and almost always, I'll just lie down with her.  I almost did this time too, instinctively, but stopped myself and told her "I'll snuggle when the show is over"  Of course, she wasn't happy.   She just kept repeating,over and over and over "Want to snuggle?  Want to snuggle on Janey's bed?  Want to lie down?" I finally gave in when the show was in its resolving last few minutes.

So---what did I learn here?  I don't know.  I think I learned I often, very very often, give in to Janey, because she doesn't give up until you do, and because the consequences of not giving in are pretty grim at times.  I don't like being  hit, or having my fingers bent, or having someone scream in my ear, or being bit.  But when I don't give in, it never seems to work as it would with a typical kid.  Janey doesn't seem to get my reasons or accept them.  It seems, like so many things, to really make no difference what I do.  Janey does what Janey does.

My boys both are wonderful kids, and they both have told me, emphatically, that they don't feel I've shortchanged them.  But from a young age, they haven't known any other life.  I am resisting the urge to go silver lining finding here.  Autism takes a toll on siblings.  And childhood is short.  My boys are adults, or close to it.  I've tried to do my best, but they have often been shortchanged, and I won't sugarcoat that.

The snowiest week in Boston history---some notes

The past seven days have broken the Boston record for snowfall amounts, by 10 inches.  Needless to say, there hasn't been much school---one day out of the last 5.  Janey is home again today.

How is it going?  Well, not as badly as it might be.  Not great, but not terrible.  As an old friend said on Facebook, Janey's in a routine now---a no school routine.  She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride.  It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible.  So she's home.

What have we been doing?  Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing.  It pains me to write that, but it's true.  When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge.  For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.

We've been doing a good deal of reading, too.  I love this.  I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them.  She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored.  We read through a long treasury twice last night, and Janey knows every rhyme by heart.

Tony has been home a lot of the time, and he's done a lot of cooking for Janey.  This is one of her biggest joys.  He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants.  She loves the whole process.

Of course, there has been some hitting, kicking, biting and so on.  We are still struggling hard to figure out just how to handle this.  For a while, we were having success with time out in the bathroom.  However, Janey has started to like this time out.  The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately).  I was trying to get her to sleep, and said no.  So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!"  I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.

More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge.  Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV.  We were all bored of it, but too lethargic to turn it off.  Janey went over and turned off the TV.  This almost always gets a quick response from us, but none of us said a word, because none of us cared.  Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!"  We had not followed the routine.  But how do we use this knowledge?  Most of the time, her turning off the TV is NOT something acceptable.  We have to let her know that's the case.  But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior?  Who knows?  What can we do?

Hopefully, there will be school tomorrow.  And that will be an adjustment for Janey once again.  I can't imagine what life feels like for her much of the time.  She doesn't understand so much of it.  Sometimes there's school.  Sometimes there isn't.  Sometimes we can walk to get ice cream or go get a Happy Meal.  Sometimes we can't.  Sometimes turning off the TV is very naughty.  Sometimes no-one seems to care.  Sometimes everyone is awake and ready to cook, to read, to talk.  Sometimes it's dark and nobody wants to do anything.  That is life, but it's very hard for Janey to understand.  When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.

After the Blizzard

Janey just took off on the school bus, her first day of school since Monday.  As you probably know, we had a blizzard here this week.  And as you probably can guess, Janey did not enjoy the break in the routine much.

The first few days were manageable.  Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted.  There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.

As is often the case, though, after two days, Janey had had enough.  I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over.  Whatever it was, she woke up in a terrible mood yesterday.  Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me.  It was not pretty.  When Tony came to help, she hit him also, which is less common.  Her rage went on and on, and Tony eventually decided to take another day off.  I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.

The day was very long.  Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out.  Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious.  I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is.  I guess wrong a lot.  It might sound funny, but repeated twenty times a day, it isn't.

I'm sure you might be reading this and thinking "Boy, they give in to her a lot".  Well, we don't, really.  She makes requests all day every day, and probably 90% of the time, the answer is no.  But when it's something we CAN do, we try to do it.  However, it's very rare that that actually works.  But what are we supposed to do?  If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book.  Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.

More and more, Tony and I feel overwhelmed.  Caring for Janey is a two person job at the least---often more.  We are left with very little time for the minimal needs to live.  It's hard to find time to cook, to do chores, to take a second to regroup.

We are pursuing help.  I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about.  We are going to have a meeting at school soon.  We are ready to accept in-home help even if it isn't respite, if we can get that.

But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited.  When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener.  We need respite, in whatever form we can find it.  We are open to a private or residential school, if such a thing is possible.  The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her.  We have realized that in the last month or so.  This current setup is just not working.  None of us are living a life that feels anywhere close to sustainable.  But saying all that is very, very different than actually getting the help, despite what seems to be the perception.  The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency.  They are well-meaning, but offer really only things like occasional parties outings.  Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance.  There is simply almost nothing available for help.

That truth--that so little help is available---is something very hard for people not living this life to accept.  I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something.  I think people feel better thinking there is help there which we could get if we REALLY wanted to.  But those of us living the lives of autism parents know the truth.  There is not help, not meaningful help.

I don't want to be discouraging, but the truth is, I'm discouraged.  I'm discouraged most of all for Janey.  She is not happy.  I'm discouraged for my sons, who must deal always with turmoil at home.  I am discouraged for Tony and for me.  Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health.  The stress we feel at all times is indescribable.

And so, after the blizzard, we are left with the reality of our lives.