A Stronger Word Than Stress

As I was thinking about yesterday, I was trying to think of a word I am not sure exists.  What word could describe a feeling that the word "stress" doesn't seem to cover?  What word is there for a day that felt like more than the mind was designed to take?  I am not sure.  But I know if such a word did exist, that many of my fellow autism parents would like to use it, because I know I'm not alone.  We deal with uber-stress on a regular basis.  We all have our ways of dealing with it.  I will write about my day, because other options that start to seem desirable, like hard core adult beverage time or getting in my car and driving thousands of miles away are probably not productive.

The day started with Janey getting on the bus.  She seemed happy enough.  However, as soon as the bus got to the school, her bus aide called to say she had had a very, very tough time during the ride.  She bit herself, hit him, got on the floor of the bus, screamed---all of her routine when she is completely out of control.  He was shaken, and made the suggestion "Maybe she needs to go back to the hospital?"  I don't blame him for having that thought.  I called her teacher, to see if I needed to go get her, and the teacher called back to say she was okay at that moment, and indeed, she made it through the day, with a few screaming periods, but she made it.  Needless to say, however, I spent the whole time she was at school on tenterhooks, waiting for a call that things had gone badly south.

After school, we had an appointment with Janey's psychiatrist.  This was the appointment that Bradley Hospital made as a followup.  They had said it was for the day after we got home, but something got messed up along the way, and it was actually a week after we came home.  When checking in for the appointment, I happily took out our brand new MassHealth card, the card that I had thought Janey qualified by means of being disabled, the card that would help us with co-pays and therapies and from many of the stories of hype I'd heard about it, would basically open a world of help up.  I had always resisted getting this card.  Partly it was that I didn't want to ask for help, but partly it was because I have a huge fear of bureaucracy.  But I was reassured it was a GREAT thing to apply for, nothing but good, and when the card arrived, I allowed myself to feel hopeful.

Well, the staff tried to add the card to Janey's record.  They made some calls and then looked at me with huge alarm.  I didn't totally understand what they were saying, but basically they said the card was for PRIMARY insurance, not SECONDARY, which seemed to make a huge difference.  We already have primary insurance for Janey, our family Blue Cross, and this state insurance was supposed to be a supplement, but from what they were telling me, it had been processed somehow as "family assistance" and that meant we had two primary insurances for her, which from the looks on their faces, was a Very Bad Thing.  They said I needed to immediately call the number on the card and get everything straightened out, or Very Bad Things would happen.

So I went into Janey's appointment feeling terrified about that.  I think the psychiatrist could see we were at the end of some very long rope.  He asked how Janey's behavior was since coming home from the hospital, and we basically said it was pretty much no better.  We wound up discussing a new medication, the long considered "mood stabilizer"  I won't get into the whole ins and outs of it, but basically there seems to be quite a bit of conflict in the psychological world about what would usually be termed bi-polar disorder, and whether it possibly might be something Janey might have.  I am not up to thinking about all the debate, but I will say it's long seemed like Janey has manic times and depressed times.  At this point, we are ready to try something new.  How she is right now is not a way I would want her to have to live long term.  So---we will be trying this new medication.  It will require careful monitoring at first, and I have to say at this point my hope levels aren't great, but we will try it.

So---after all that fun in the day---a breakdown on the bus, a huge insurance snafu and a new possible diagnosis for Janey of a major psychiatric disorder---I thought I would cap off the day with trying to call the Mass Health people.  Of course, there was a half hour hold, and of course, once I got someone, and again was on and off hold for half an hour, the phone somehow got hung up.  I was on the cell phone, and I don't know if it was me or him.  But that truly did add a needed final touch to my day of the word beyond stress.

All that was left was Janey screaming a lot at night off and on, and hitting me hard a few times.  She fell asleep about eight.  Tony had been out getting William home from college.  The day ended listening to my two amazing boys joking around and discussing world events.  I was able to fall asleep by pushing aside until today the day's worries.  I listened to them talk as I drifted off.  Even the toughest day has moments that are golden like that, and I need very much to keep remembering that.

Trying

Last week was extremely tough with Janey, peaking on Wednesday, which would been in the running for one of the worst days for her and for us ever.  She was in a fury all day.  She lunged at me over and over, scratched herself badly, cried without stopping----it was incredibly tough.  We went for a while to my friend Maryellen's house, which Janey usually loves, but this time, she was just as unhappy there, and extended her attempts to bite to Maryellen.  The evening featured both boys needing rides from places far away, and Tony took her on one of the rides, even though that made it a ride straight through hell, because he could see I was a zombie by that point.  Then I watched her, and she thankfully finally fell asleep at about 7:15.

Tony had called her psychiatrist that day, and thankfully he was able to see us Thursday at 10 am, on an emergency basis.  Usually Tony takes Janey to see him on his own, but I went this time with them.  I had a feeling what would happen, and it did.  He suggested we try a medication I was resistant to in the past.  It's a medication that is often used for ADHD, a high blood pressure medication that also works to slow down the system a little, as he put it, to "give her a minute to think before she acts"  The main side effect, he said, was tiredness.  At this point, tiredness didn't sound like something bad.

Now I'll stop her and answer the critics that are in my head, because they speak to me louder than anyone else does.  Why give Janey medication?  She already takes some, why give her more?  Why not try something else?  Aren't I doing some kind of experiment with her, using drugs at such a young age?  Why can't I find a behavioral way to manage her behavior?  And the underlying voice, the mean one, saying "What kind of mother are you, not to be able to handle your own little girl and to just turn to drugs to calm her down?"  Well, voices of dissent, I invite you to read a few entries of this blog written when Janey is at her worst.  This isn't annoying behavior.  This is life-threatening behavior.  If unchecked, I think Janey could honestly seriously injure herself, or others.  At the very least, she isn't learning or thriving or having fun or being really anything a child should be able to be when she is hysterical, furious, lashing out, crying, not sleeping, for days on end.  The most powerful argument I told myself---what if all of this was part of a "strictly medical" problem?  What if I decided, because of my own beliefs, to not get her help with that medical problem?  I think few people would support that.  In fact, if that failure to get her help resulted in some dire end, I could be in major trouble for NOT getting her help.  Why is it that because autism and the mental health issues it sometimes creates are not considered "medical" problems, getting medication to help them is often seen as giving up, as bad?  I don't know, when I think of it that way.

Anyway, the medication has had mixed results.  The very first day she took it, Friday, the result was sleep.  Sleep most all day.  I sat next to her all day, making sure she was okay otherwise.  I think she'd been operating on a huge sleep deficit---I know we were.  She slept Friday night fairly well too, and Saturday, slept much less (I had read the tiredness usually wears off quickly) and was generally in a better mood.  There were still outbursts, but they were muted.  Sunday, yesterday, was the huge big day for us.  Tony and I took William to college (and a huge shoutout to him here!  My baby boy, in college!) and Freddy watched Janey for eight hours.  If Janey had not been a little better due to the medicine, I would not have left Janey with him, and I would have missed seeing William off, as I've missed so many milestones in his life.  I'm very glad I was able to be with him.  And Freddy's report on Janey?  She was "great".  She did sleep a couple hours, but those hours were made up for last night, when she was up from pretty much 1 am on.  So not such a great result from the medication in terms of regulating her sleep.  As I write now, she's been napping about an hour also.

I'm not sure if this medication is right long term, but we had to try it.  The psychiatrist mentioned that in the mid-term future, we will probably be looking at mood stablelizers for her.  I know what that means.  I know children are no longer diagnosed as bi-polar, but if they were, I know Janey would be so diagnosed.  Her cyclical highs and lows are very, very, very pronounced.  I know, from a cousin and a friend's husband that are/were bipolar, or manic-depressive, that it's one of the closest to being purely medical of the psychiatric diseases.  It is not treatment, well anyway, without medication, from what I have seen (and they were both severe, severe cases)  If Janey is bipolar in addition to her other challenges, I will welcome medication  at the age that becomes appropriate.

And so we go on.  We are trying.  I don't know if I am doing the right thing or not.  I never do.  I only know I have to try, to try to help Janey live a decent and meaningful life, and to stay alive myself as I do so.

The storm has passed

Janey had a tough week last week, but knock on wood, it appears to be over.  It happens like that time and time again---a rough time, followed by a cheerful time.  And the cheerful times are longer, lately, which is wonderful, but it doesn't make the crying weeks any easier or more able to be explained.  It does help, though, to know they seem to resolve themselves.  When Janey has a tough week, it affects everyone around her, both at home and at school, and when she cheers up, everyone around her cheers up too.  The principal told me today what a good day Janey had had, after her tough week.  It amazes me that she has over 200 students but still is able to notice Janey's moods and take the time to tell me---that's a sign of a very caring principal.  And also a sign of how strongly Janey's moods project themselves.

I wish I knew what caused the tough times.  I've asked myself that here over and over.  They come out of the blue, storm over us and go away, like a winter snowstorm.  I do think there is something cyclical about them, something a little bi-polar in a way.  But I also think they feed on themselves.  I think when Janey starts to cry, it bothers even her.  After all, she has to live with the crying at every single moment, and she probably has no idea what is causing it either.  It's a lot to ask her to calm down.  She has no idea how to, and she is mentally much like a 2 year old in the middle of a tantrum.

We are still on edge a little.  When a storm has just passed, we always are jumpy that we are just in a lull, and she will start the crying again.  I think she feels that way too.  Driving home tonight, she was upset by the music I was playing, and I could see her trying hard not to get hysterical.  She looked nervous---a look I've never quite identified in her before.  She was crying in little puffs---trying to not let it out.  I think she was thinking (non-verbally, probably) "Here we go again.  I can't start the whole crying bit over.  But I don't like the music.  I don't know how to get that across.  I've got to stay in control..."  It was painful to see.  I try to give her the words "I don't think you like that version of Jingle Bells.  I can put on another one"  She looked relieved, for a minute, but then something was wrong with the new version, something she couldn't explain.  Not being able to use words at times like that would be enough to make anyone cry.  I guess in some ways, it's more amazing that she's happy as much as she is than that she gets sad sometimes.

What a difference a few days makes

Janey had a very tough stretch around her birthday. From about Tuesday to Saturday, much of each day was taken up by hysterical crying. It was awful, for her and for us. We really had and have no idea what was wrong. This kind of stretch seems to happen about three or four times a year. Thankfully, and knock on wood, the length of the stretch seems to be getting gradually shorter over time. But it's still almost impossible while it lasts. And then Sunday, Janey woke up happy. And she's been happy, most of the time, today also. I hope it lasts. It tends to, once she gets out of the sad stretch. She's not manically happy, just regular cheerfully happy.

And of course I would guess I'm not the only one thinking this sounds a lot like manic-depression, or bi-polar disorder, or whatever it is called now. Whatever it is called, I've read it is no longer diagnosed in children. And I guess I'm kind of glad of that, in a way. I don't need any more labels for Janey. I hope by the time she is an adult, she doesn't get these spells. But the fact remains that something sometimes makes her very sad for a while, and something sometimes makes her manically laugh all day and be very wound up and wild for a while. Whatever it is, it's enough of a pattern over the last 5 years so we can kind of recognize the moods coming on and going away.

When Janey gets happy after being sad, it's wonderful. We appreciate her all the more. Tony and I look at each other many times a day and we are both thinking the same thing---if she could be happy, nothing else matters---the autism, the retardation, the lack of skills like toilet training---none of it. She can be the most delightful child on earth. Tonight she was thrilled to "help" Tony with laundry, thrilled to eat a supper of hot dogs and cabbage slaw, thrilled to watch a Disney video WITHOUT singing that she had never seen before. Earlier today, she said to Tony "I want soda!" and he said "I want soda too" and then just to be funny, "I want soda three" and she said without missing a beat "I want soda four"! This afternoon, she said "I want to go to Va-Vere Beach, but that's silly. Maybe the weekend" I've never heard her say "weekend" before. I know she was quoting me, but it was still great to hear.

I wonder all the time what is in Janey's head. What drives her moods? What does she think about? How can I help make sense of the world for her? I just don't know. I'm going to keep trying to figure out, though.

Manic nights

The last few nights have been what I call manic nights for Janey. She has spells of those now and then. She sleeps very little, and spends large parts of the night running around the house, singing to herself, turning lights on and off, waking us up. If we try to contain her in bed, she screams without stopping for hours. It's almost impossible to deal with these nights. I feel totally hung over after one, as I do today, and they come in groups, and tonight shows all signs of being another one---it's close to 9 and she is not a bit sleepy acting, and that is after sleeping probably 2-3 hours last night. She was fine all day, cheery and happy mostly. It's times like these I do consider seeing if she really is bi-polar, and giving in and getting medication. I talked to her pediatrician about it. He is not terribly interventionist, which I like, but he said that some current medications aren't too bad, and that bi-polorness is treatable and if she gets worse, it might be worth really trying to get it treated. I am still skeptical. She is only 5. Just recently I've read about how the new DSM isn't going to even recognize bipolor disorder in kids. I think she's cyclical, for sure, but there might be other reasons. Maybe it's a vicious circle as when she has one of those nights, we are all thrown off and half crazed from lack of sleep, and that affects her into the next night. Sometimes the manic laughter is almost as hard to take as the crying. Some days and nights like this the future looks long and very, very tiring.