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.

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

Life Isn't Fair...and other negative thoughts

I will start with a confession.  Almost every day, I dread Janey getting home from school.  It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.

I try, very hard, to figure out ways to make this time better.  I've written about that before, quite a few times.  I think hard about what to do to improve the time.  Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home"  Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things.  When the weather allows it at all, we spend time outside.  This spring, I plan to add a nice long walk to the daily routine.

Today, it all went downhill quickly.  We had the snack---lots of leftover Chinese food.  We played toys.  I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so.  (Actually, I played with them and she watched---that is how most of our playing goes)  I read her a book about Little Ponies, and she sort of listened.  Then we put on a video.  She has enjoyed some Weird Al videos lately.  She did today too, until one came on that bored her.  I tried to find something else she'd like.  I took a chance on "Dancing Queen" by Abba, which she seemed to like at first.  But then she stopped liking it.

I knew she'd stopped liking it when she kicked me, hard.  As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much.  I cleared away quickly enough so she wasn't able to bite me, as she was trying to do.  I shouted for her to get on the bed.  I try to stay calm, but I wasn't feeling calm, and yes, I yelled.  She got on the bed, in a fury.  She tried to get up immediately, and I told her to stay where she was.  She lunged at me.  I walked away.  She got up.  I stopped trying to get her to stay on the bed.  I didn't want to be bitten or hit again.  She asked for strawberry milk.  I said no, not right then, not the way she'd been acting.  She decided to fix it herself.  As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.

At this point, my mind just kept saying one thing, a not very useful thing.  I was thinking "This isn't fair"  I haven't really thought that in that particular way before.  I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair"  What I was feeling right then wasn't that, though.  It was feeling that the relationship between Janey and me isn't fair.  I try, I try so very hard.  And she seems to try not at all.  I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.

Of course, I realize that isn't fair to think.  Janey is not capable of seeing things from my perspective.  She isn't purposely trying to make my life hard.  I am sure she doesn't want to be the way she often is, angry and destructive.   But damn it, it gets hard sometimes to be her parent.  It gets hard to see the silver lining.

Lately I have very little energy.  I am not sure why.  I am tired all the time.  Some of this might be depression, or hopelessness, but a lot of it is probably physical.  It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work.  Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs.  The tiredness, whatever the cause, isn't helping matters.

Still, things are better in a few ways, I realize even on my worst days.  Janey is crying less and sleeping better.  She is calmer overall, for sure, than she was during the dark days in November.

It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth.  I don't like to be downbeat.  It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted.  I'm trying to work on that---on feeling like I have to be upbeat when I'm not.  So---no cheerful ending, although I'm fighting the urge to include one pretty severely...

A Whole New World Part Two

I am home for the night from the hospital---Tony is staying with Janey tonight, although I am of course on call if he needs me.  I plan to go back in about 6 am tomorrow.  Everyone has been telling me I should just sleep once I get home, and maybe that is good advice, but blogging here yesterday felt the first thing I've done in days that made sense.  So I am going to continue my story.  I don't think I'll catch up to the present this post, but we'll see.

After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened.  One is that I found there was a woman in the room, someone called a "sitter".  The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter.  But I have found out since it's standard protocol for psychiatric patients in non-psych wards.  They are women (so far all women) that sit in the room and keep an eye on how things are going.  Some do more, some don't.  They are there ALL THE TIME.  If they have to go to the bathroom, they have to get someone else to come in.  More on how that all feels later.  At this point, I was too dazed to think much.

A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room.  The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door.  This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor.  Again, we were supposed to keep the door open at all times.

Janey was very unhappy.  She started to again lash out.  This time, the psychiatrist covering the ER didn't want to give her more medication.  He said instead we should just walk around with her to try to calm her.  A good idea in theory, but in practice, it didn't work well.  Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle.  She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.

At this point, I decided I'd had enough.  I called the nurse and said I felt being at the hospital was only making things much worse.  I said I wanted to be discharged---that I needed to take Janey home.  I kind of knew that wasn't going to happen, but I had to say my piece.  I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling).  The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay.  She said she did have good news---we were going to be admitted and moved to a private room on a medical ward.  We would be a term that is new to me, "boarders"  I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available.  I was learning new vocabulary fast that day.

The move came about an hour after that.  The room was a huge step up from being in the ER.  It was up on the top floor of the hospital, in what is actually a transplant ward.  That is where they had room.  It had a bathroom, a window ledge bed for parents and more room for Janey to move about.  That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room.  She had to stay in the room at all times---it wasn't considered safe for her to leave.

Janey freaked out again badly a little bit after getting to the room.  She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence.  A lot of nurses came in and had to restrain her.  They gave her an extra dose of Risperadol again.  After about 10 minutes, she calmed a bit.  She eventually went to sleep around 9 that night.  I told Tony he could go home, and I passed out cold asleep too.

Janey woke up at 3 am, freaking out once again.  Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication.  When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us.  She was up from 3 on.

The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before.  That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life.  But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable.  I say barely, because she was absolutely constantly restless.  She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long.  And endlessly, she would ask to take a walk.  And I would have to say no---we couldn't take a walk.  Which killed me.  It felt, quite frankly, like being in prison.  You have an agitated, frantic child who very much likes to stay active, and you can't leave the room?  For days?

Janey went to sleep about 7 that night.  I couldn't get to sleep right away.  I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.

Janey woke at midnight, with another outburst.  The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point.  She said "You have to keep yourself safe.  You have to step away when Janey is trying to hurt you.  You can be a better mother to her if you don't sacrifice yourself"  In my sleep-deprived state, my mind suddenly really understood that for the first time.  I have to keep myself going.  That is the only way I will be able to keep going for Janey.  She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more.  I have been reflecting on that thought a lot.

I want to write more, but I will listen to the last paragraph and get some sleep.  As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight.  We will have to remain at Children's Hospital until we get one.  I hear often two weeks as a common time frame.  I very much hope for something sooner.  Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her.  But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away.  This new world is not going back to being the old world any time soon.