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.

Ten ideas for all autism organizations out there---what would REALLY help!

The last few days have been, to be frank, awful.  Janey is crying or screaming pretty much every waking moment.  I hope she's been happier at school, but she got off the bus crying today.  She has a good week last week, which ended the minute the weekend started, but I had hoped the weekdays would be good.  They aren't.  I've been feeling fairly depressed.  The other night, trying not to cry, I sat outside and thought.  My first thought was "Nothing would help.  There is nothing that would help" But then I thought more, and thought how wrong that is.  There is several things that would help.  They are things that I can't do alone, but I think they are possible. I thought I'd put them out there, in case anyone from an autism fundraising organization ever by chance reads this.  Here is what someone in the trenches, deep in the trenches, wishes you'd spend money on.

1.  A well-staffed, well-run, free or very low cost respite center.

2.  Emergency help that parents can turn to in a true mental health emergency

3.  A free lending library of developmental and sensory toys suitable for kids with autism.

4.  Specific instructions on best practices in autism parenting, without a biased leaning toward any certain approach.

5.  True year-round schools

6.  Recreational activities for children with autism---not once a year Special Olympics, not the occasional party, but affordable and well-taught lessons and fun---swimming lessons, music lessons, dance lessons, art lessons...

7.  Education for the general public---maybe a series of documentaries in prime time---that shows the FULL range of autism, not some amazing very high functioning handpicked examples

8.  Nights at local restaurants, museums, stores and more for families with autism, where the occasional scream or hand-flap or tantrum will be just part of the jolly background noise

9.  Education for classroom aides, who often wind up doing much of the hands-on care of autistic kids at school.

10.  Research not into causes or prevention, but into TREATMENT---medications, therapies, diets, etc.

That's my list.  Any one of the items would make a different in my life personally, and I think in the lives of many of us out there.  Like most parents, I'm not looking for a handout, not looking for money or special treatment.  I am looking for help that I desperately need to be able to raise my child.  I might write more about each of these wishes in the future, but just listing them for now felt good.  Even if none of them will happen, it's better to know there is something that COULD help.  Let's challenge every autism organization out there to help---to remember we need help that is hands-on, respite-giving and affordable.  Desperately.

Screams and Smiles

That's the story of the past week.  Between the screams, there's been a lot of smiles.  Or depending on my mood, between the smiles, there's been a lot of screams.

Today, it's the screams I'm hearing.  Janey was up a good part of the night, screaming off and on.  Tony was my hero and let me sleep through much of it.  She went back to sleep, as she seems to like to, left to her own devices, about 8, and slept until 9:30.  I had coffee and a breathe.  Then, awake, screaming.  I gave her a shower, and she seemed somewhat settled down.  So I tried to sneak in a sink full of dishes, just because I like that kind of wild and crazy fun.  I put on music, because dishes are the one time Mama gets to listen to whatever she wants, and what I wanted was some showtunes, which Janey enjoys too.  We had a good time dancing to "The Lonely Goatherd"  But the next song, "One" from A Chorus Line, was not to her liking.  So she had a scream-fest, went into the living room, put on a video, got mad at the video and pushed the VCR and DVD player off the shelf.  They didn't break (they are low to the ground) but she knows very well how we feel about that.  I was at a low ebb and screamed back.  I told her to get on her bed for a time out.  She had a funny look when I said that, almost a happy triumphant look.  She had gotten to me.  I guess every kid like that a little.  I managed to finish the dishes and she only got up from the bed about 6 times, and went back each time I told her to.  Then I couldn't make the time-out last any longer.  So she got up and, just for fun, started screaming again.  That's been our morning so far.  Now she might be gearing up for a nap, which I should not let  happen, but I am going to let happen.

A few days ago, we had a great day going to NH to the camp (Maine talk for a cabin on a lake) of old friends.  I saw people I hadn't seen in 20 or more years, and had a wonderful time.  Janey, for the most part, was good.  They had a couple boats, and she got four boat rides, her favorite thing on the earth, I think.  Everyone was good to her and to us, and she was happy almost all of the car ride, or asleep (2 hours each way)  It felt like a near normal person day, except for having to watch Janey every second and except for the few times she lunged at someone or pulled their hair (which they were so kind about, thank you, Mary!)  We never can quite pass for a normal family, but we can almost pretend for minutes at a time, like when she was sitting in bliss on the boat.

Summer school starts on Monday.  I wish I didn't long for it so much.  I wish I had been able to stick to my original plan and not send her, but I don't think I would have retained my sanity.  I hope it goes well.  She will take the bus, so I won't see much of what is going on.  Which again, I feel guilty about.  But I am starting, a little, now and then, to realize that I do really have to think a little bit about not losing my mind, or my health.  Caring for Janey is endlessly tough.  It really is.  I can tell myself it isn't, but it is.  Seeing her in NH, alongside the adorable 4 year old daughter of a woman I've known since she herself was little more than 4, I was hit a little hard with the difference between Janey and other kids.  Which I am sure anyone who has spent any time with her thinks "How could that not be something she sees clearly every second of the day?" But we all play games with our mind. I think when I really let myself see what a day is often like for me, it's, as I think I've said before, like when cartoon characters realize they have walked off a cliff.  They are fine until they look down.  I have been looking down lately.  I probably have to.  But sometimes I'd rather live in the fantasy world without gravity.

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.

The worse screaming night ever

Yes, indeed, last night wins the price, and the competition was stiff.  In terms of intensity, it was the worse screaming night ever.

The last few days have been building up to this award-winning night.  Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday.  Yesterday morning, she was tough but not impossible.  I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively. 

I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool.  The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time.  Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.

When Tony got to the school, Janey was very happy, as she was outside running around.  But he said before they even reached the door of the school, she started crying.  And she screamed all the way home in the car.  Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken.  He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.

I heard Janey in the driveway the minute they got home.  She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming.  She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying.  I mean screaming, the kind of screaming that would not be at all out of place in a horror movie.  Absolute all out no holds barred screaming.  So loud that talking was impossible.  

While she screamed, she ate.  She ate everything Tony cooked in a vain attempt to calm her down.  She barely stopped screaming while swallowing.  Once in a while, she spiced up the screaming with a screamed phrase.  Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.

At one point, we asked ourselves whether we should go to the emergency room.  It was that bad.  And we might have, had we thought it would do a single bit of good.  But it wouldn't have.  There isn't anything they could do that we couldn't do.  That is the sorry state of mental health services for children in this country.  Here's an article which was in today's paper that addresses that somewhat---  link.  If Janey had been physically sick, we would have had access to the best care in the world, minutes away.  But for her kind of sick, mentally sick, there is no care.

After hours, Janey screamed her way to sleep.  She had calmed down a tiny, tiny amount before that.  She is still asleep, and I hope with the strongest hope possible today is better.

So---what caused this?  That is something we will probably never know.  Janey can't tell us.  I doubt she knows herself.  My theories?  Very few.  One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount.  I think she might be holding her urine at school, not wanting to wet herself.  Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and  with the relative lack of toilet training skills and talking skills, that isn't something that she does easily.  Two of the nights, she used the potty, last night, she wet in her pullup.  I really don't know if that's it.  She could be feeling overwhelmed about something.  She could be hearing sounds in her head.  She could be on the verge of a breakthrough, as   was commented here yesterday.  She could be physically sick, although I don't think so.  She could be any number of millions of things she has no words to tell us.  

It breaks my heart to have Janey so sad.  It also breaks my heart that the boys were not able to  have any semblance of normal family life last night.  William had his first college interview.  That would be a great thing to be able to talk to him about, to celebrate.  But we heard little bits and pieces between the screams.  That isn't fair to William.  But not much about this whole gig is fair.  Not to us, and not to Janey.  Not to anyone.