Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Janey's request and how it hit me

Janey running down the driveway

As the weather gets more summery, Janey loves to be outside.  Her favorite thing to do is just to run around our driveway.  The driveway is fairly long, and on a slope, and she does laps, and sometimes yells out in glee as she runs down the slope.  She seem to enjoy just being in the sun and wind and weather.

Last night, after a car ride with Daddy, I went outside and sat on the steps by the driveway to keep an eye on Janey as she played.  After a few minutes, she came over to me and said "Want to snuggle on Mama's bed?"  I took that to mean what it usually does---that she wanted to go in and have us both get on her bed for a snuggle (the bed is Janey's, but it seems to be named "Mama's Bed")  I started in and waited for her to follow, but she didn't.  I said "Come on in, Janey" and she then said what set me back "Want to go away?"

Janey says "Want to go away?" a lot now, but until now, always inside.  She often wants me to go in the next room, to get out of her sight a bit.  I try to do just that, whenever I can.  She has a right to time to herself.  Of course, I'm always keeping my ears open, and every few minutes, taking a peek to make sure she's okay.  She almost always is, or if she's doing anything that I need to stop, it's things like fixing herself a bowl of salad dressing like one would have soup, or trying to re-arrange the cats when they don't want to be re-arranged.

Up until yesterday, though, Janey had never asked me to leave her alone outside.  And, of course, I can't.  I can't leave her alone outside, ever.

I tripped over my words in answering her.  I wasn't expecting the request.  I said something along the lines of "Mama has to stay out here with you.  You're not big enough to be outside by yourself.  I need to be here to take care of you".

Of course, Janey is old enough that if she were typically developing, she could certainly be outside by herself.  She's 13.  When I was 13, almost every day after school I walked through a little woods across from our house and spent hours at the shore, exploring the rocky banks of the St. George River in Maine.  I love being alone.  I always have.  I crave that time alone.  I'm not sure if Janey notices, but if she does, she's probably seen plenty of girls her age without parents, walking down the sidewalk or in stores or the like.  But she can't be those girls.

We live on a very busy street, one almost like a highway.  Janey has never run into the street, but I live in fear of it.  There is also lots of foot traffic on the sidewalk, people I don't know and obviously can't leave a mostly non-verbal child with no understanding of the dangers people can pose alone outside.  If none of those were a danger, there is the fact Janey sometimes eats non-food items, that she might decide to push aside a stray cat or dog, that she just simply doesn't have the skills or knowledge to take care of herself alone.

Janey gave me a long, hard look after I said no.  She didn't cry, or repeat her request.  She just looked at me.  I was almost crying.  I couldn't say something like "not right now" or "when you're older".  The truth is---it's very unlikely, pretty much completely unlikely, that Janey will ever, ever be able to be on her own in public.

After a few minutes, Janey headed to the door and we went in.  She seemed to be over my "no".  But I thought about it for hours.  I can't imagine a life where I would always have to be watched, supervised, taken care of.  Maybe Janey doesn't feel that way.  I don't really know.  I guess I hope, I hoped, she didn't.  It's easier to hope that, to hope she doesn't see how her life is limited.  As she gets older, as she gets to ages I can so vividly remember being, as I look at her and see a beautiful teenager, sometimes my heart breaks for what her life can't be.

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.

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.

The day it all hit me

It's funny how the mind and body work when you are in the middle of a crisis.  There must be some kind of system that kicks in that lets you keep going when normally you would have collapsed on the floor, overwhelmed.  That system was in high gear from last Friday until yesterday.  It's not that I didn't cry some or feel exhausted, but I was functioning.  Last night, the system wore out and I was hit hard.

I was okay yesterday morning.  I did housework and laundry and dishes, enjoying the feeling of doing everyday work again.  We drove to Providence to see Janey midday.  Freddy came too, to see her in the new hospital.  The drive went quickly---we are figuring out new routes to take, and it's a pretty straight shot to drive there, although a long straight shot.  We are starting to know the routine, how to check in, what not to bring into the hospital, where the long locked halls lead, all that.

Janey looked well cared for, which was great to see.  Her hair was clean and brushed, and she was dressed in her nice clothes.  She seemed much quieter, calmer overall.  We visited with her in her room, as we are required to do.  She seemed happy to see us.  We brought her her toy Olivia and Beanie Baby style My Little Pony, and we played with those a bit.  Then I sang her some Christmas carols, letting her choose what I would sing next.  She looked at me with the look I only see when she is totally overcome with music---a look of wonder and amazement, as if she can barely believe the perfection of the songs (not my singing!)  When I sang "O Little Town of Bethlehem", she kept repeating the line "yet in thy dark streets shineth" and I sang that part over and over.

After a while, she was getting restless and started asking for the kind of things she asked for in the hospital, over and over..."Want to take a shower?  Want to watch Olivia?  Want bacon?  Want take off socks?"  We realized it was probably time to go, before she got more upset, and we told her we were going to say goodbye.  She said "Put on shoes?  Go to Mama's house?"  If there is a moment when a parent has their heart broken, that is it---when your ten year old daughter, in a locked psychiatric ward, asks for you to take her home.  I hope I never again feel what I felt that moment, and I hope none of you ever have to feel that feeling.

We took her back out to the ward---the area they seem to spend weekend days in, outside her room.  I won't write much about the other kids there, because it is not my story to tell and I respect their privacy, but I will say Janey was the only girl I saw, and also the only child that seemed to talk.  She stood out, as it feels like she has done all her life.  I wish so much sometimes I could gather all the girls together that I have met through this blog, that we could get our girls together in a room so Janey for once could have peers like herself.  Maybe someday that can happen.  But for now, it so often feels like Janey is very alone.

After we got home, I did mindless things---watching some Star Trek, reading, knitting.  Tony was working on a long, long application we have to do to try to get state supplemental insurance for Janey, to help with the bills that will soon start rolling in.  At one point, he asked me for a little information for the form.  I found I couldn't answer.  I couldn't think.  I couldn't put together simple sentences.

Tony quickly realized what he was dealing with.  He stopped asking any questions.  He made me some hot chocolate, and then, a French bread pizza.  He comforted me as I collapsed into my bed, crying and crying.  I am incredibly lucky to have a husband like him.

Later, my rock of a friend Maryellen called me, and we talked for an hour.  She listened to my teary account of the visit to Janey.  That is so important---to have someone I can pour my heart out to, someone outside the family but still very connected.  I am so lucky in the support I have, from friends like Maryellen, from my family and from my extended blog family.  I truly want you all to know that---how much you all have helped.

Today I feel stronger.  I am sad we will probably not visit Janey today.  The Patriots play in between where we are and where she is, and traffic back and forth becomes a nightmare.  I would not let that keep me away, but I think also Janey might need a day without the confusion our visits seem to bring.  I hope I am right there.  I know she is in the place she needs to be, but I miss her so intensely.  It is not the normal course of things to have your little girl so far away, literally locked away.  My life has taken a turn which is often feeling surreal.  I need to get through this.  I think today, I will retreat to gather strength for the next round, to go on and keep on fighting.