Wednesday, December 31, 2014

Another New Year's Eve, and a look back

I decided to look at my last post of each year since I started this blog, when Janey was 3.  It was an interesting exercise.  A couple things struck me.  One is that I kept, each year, desperately looking for progress, finding signs of it, listing them and then, the next year, without realizing, listing the same things again.  The progress ebbs and flows, but it doesn't seem to really be a forward line.  Another thing is that the end of the year has been a quite tough time a few of the years.

2008 Last Post of the Year Link

In 2007, I'd just started the blog, and didn't really write any year end post.  At that point, this blog was more of a diary. 2008 was a lot the same.  Strangely, what I wrote for the last post there sounds like it could have been written about the past few months---hitting the TV, biting, scratching.  Janey was only 4 then, and so the behavior was easier to handle, but it's a little startling to see it started then, with quite a few years in between that she has less acting out.

2009 Last Post of the Year Link

Janey's love of Christmas music hit that year, and it's fun to read about that.  I was starting to realize how severe Janey's intellectual disability was, and how her talking was very limited.

2010 Last Post of the Year Link

Janey was 6 that year.  It was a tough year, the year she had such a terrible time around June, and we started her on medication.  I reflected about the lack, once again, of a miracle breakthrough, and was starting to see it wasn't ever coming.

2011 Last Post of the Year Link

I was a little more upbeat that year, the year Janey was 7.  I remember that as one of the better years.  I went back to the theme of how limited the progress was, but I also wrote about cute things she was doing.  We were learning to enjoy our little girl as she was, not for what we were hoping she would become.

2012 Last Post of the Year Link

Another fairly good year, when Janey was 8.  I reflected on realizing that I was the one who knew her best, and I was encouraged by her increased understanding of our talking, and her communication, although talking wasn't how most of it was done.  I mentioned toilet training, surely thinking we were finally on our way (we aren't, and I now think we never will be)

2013 Last Post of the Year Link

A very downbeat post.  The end of last year was awful---the whole year was the start of the new reality, that Janey was getting older and things were getting tougher.  She was becoming increasingly unhappy, and I was feeling increasingly pessimistic.

And that brings us to now, 2014.  It's been quite a year, as most of you know.  The two big events were Janey changing schools and her hospitalization.  She switched this year from the inclusion classroom and school she'd been in since 3 to an autism only classroom in an autism wing of another school.  Much of that went fairly well, and in fact the time from about May-October was overall good, with Janey having a pretty nice summer and even going to the amazing Camp Fatima overnight.  However, we will most remember November this year, when Janey's self-injurious and lashing out behaviors increased to the point that she spent 24 days in two hospitals.

Where are we right now?  Right now, today, Janey is in a fairly good mood.  We are thinking her new medications might be doing something, although we've had kind of an off and on pattern of good days and not as good days.  Janey is Janey.  I think less, these days, of progress, and more of just learning how to best be a mother to the Janey I have.  She is an amazing person in so many ways.  We continue to enjoy her love of music.  Just today, we listened as she heard three new songs (we've been listening to a classic rock countdown) and sang them back, all perfectly, within minutes  She and Tony have a special morning routine any day he's not working---bacon and pan-fried vegetables all morning.  She uses the computer with ease to watch videos she likes.  She is getting tall and remaining beautiful.  Yet we are on alert all the time.  We knew at any minute, she might rage and bite us or scratch us.  We know that good days are to be treasured because there will be bad days, and they might be very bad days.  We love our Janey.  We despair over her, often, but we delight in her often too.

Here's a year end picture of my girl, and my year end wish to all of you.  Might you all have a 2015 where the happy moments outnumber the sad, and may you all have moments of true, pure joy in your special children, the moments that keep us all going.  My love to all of you.


Friday, December 26, 2014

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.




Tuesday, December 23, 2014

A Parenting Book for One

One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work.  They don't cover kids like Janey.  They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect.  They assume a child is motivated by praise, and that a child's actions have external stimuli.  They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people.  They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.

I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey.  I've written it in my head.  But I'm going to gradually post it here, bit by bit.  I do this because perhaps some parts of it will also apply to other children a bit like Janey.  But I caution---much of it won't.  Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.

Today's chapter---how to calm Janey down when she has an outburst.  I should say, how to MAYBE calm Janey down, as very often, you simply can't.  But a few things sometimes work.  I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.

1.  Food..  Often, when she's upset, she's hungry.  She doesn't seem to make this connection.  And her hunger, like so much of her, seems sometimes out of the blue.  She can have eaten a lot already, and still be very hungry.  We have learned to quickly get some food into her if she is starting to escalate.

2.  A shower.  Janey has taught us this one herself.  The most common thing she asks for when upset is a shower.  The warm water streaming down seems to calm her immensely.  We let her stay in the shower as long as she wants.  I sit in the bathroom with her and read.  The one has the added benefit of getting her away from the rest of the family, so they can have a little break.

3.  Turning everything off.  If Janey watching TV, or if music is playing anyplace, we turn it off.  We often have to unplug the TV so Janey doesn't turn it back on.  We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.

4.  Covering Janey with blankets.  If I can, I get Janey on the bed and cover her up.  Like many kids with autism, the pressure of the blankets seems to help a good deal.

5.  Repetitive soothing touch and sound.  I will often massage Janey's feet with lotion.  While doing this, I'll sing a song, something mellow and quiet, over and over.  Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."

6.  Backing away.  If Janey is still upset after all this, I've learned lately I need to just get out of her way.  I don't want to be hit or bitten or have my hair pulled, for several reasons.  One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation.  So sometimes, I just walk away, and let Janey rage.  If she follows me, I keep moving.

7.  Nothing.  When Janey is truly agitated, nothing helps.  Nothing at all.  All that can be done is to wait it out, sometimes until she falls asleep.  Doing anything at all makes things worse.  So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background.  This is the hardest one for me to do.  I want to help Janey, but sometimes, there is no help.  She needs to just get through the episode on her own.  Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.

As you might guess, it's been a long morning here.  I have used all these techniques and am now, in writing this, on step 7.  It seems to be working a bit.  Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me.  Merry Christmas Eve Eve.


Sunday, December 21, 2014

A good day, then a bad day

Saturday was the good day.  Janey was happy pretty much from morning to night.  We hadn't had a day like that in several months.  It was wonderful.  She was cheerful, talkative and laughing---a real laugh, not the manic strange laugh she sometimes does.  She interacted so nicely with both brothers, and she sang and danced and was a joy.

During the day, Tony and I did a lot of knocking on wood and reminding each other not to think a corner had turned.  We enjoyed the day very, very much as it happened, but we tried not to get our hopes up.  I think we did, though.  Janey had been on the new mood stablizer medication for two days, two doses, and even though she's on a very low dose to start, we somehow hoped it was doing something, making her feel better.  Maybe it was.  But...

Today, Sunday, was awful.  It was right back to the typical bad days of the past few months.  Janey screamed a great deal, smashed her fists on the TV and the computer when they annoyed her, tried to hit us (we are getting better at being guarded and didn't get badly hit) and cried for hours.  It was a very tiring day.  It felt more discouraging than other bad days recently, almost, because there had been that little bit of hope.

Of course, I am trying to say the right things to myself, that things don't change instantly, that just because today was a setback doesn't mean the new medication might not be helping, that even "normal" kids have ups and downs---all those things I should think.  But I don't think I'm as good as bouncing back as I used to be.  The events lately make me see how bad things can get, and how little the medical or psychiatric profession can really do.

I've decided to give myself next week, Christmas week, off from anything autism related that isn't strictly about daily Janey care.  Most especially, I'm going to not think about the Mass Health debacle.  You might remember how when I gave our health plan Janey's new Mass Health card (state insurance for low income or disabled people), they freaked out and said it was the wrong kind.  After a lot of research and talking to an expert who luckily was holding a meeting at Janey's school, I think I figured out what happened.  When Tony talked to a financial person at Children's Hospital, he told her our income, and she said that when we first applied, we would be refused, and then we would have to do a special appeal that gave the details of Janey's disability, so she would get a special type of Mass Health for children with disabilities.  However, I don't think the woman realized we have 3 kids, not 1, and our income was actually within a range where we qualified for state help without Janey having any disability.  So the insurance was approved for her with that initial application, but approved as a type that is used as a primary insurance, not the special disability kind.

If the above paragraph confuses you, you are not alone.  I guess fixing this kind of mix-up is extremely tough, and requires all kinds of sending papers here and there and somehow getting through to the right people.  I wish I had gone with my feelings over the past 10 years and never applied.  The expert also told me that both insurances, our federal Blue Cross and Mass Health, don't cover special autism services anyway.  This is despite the fact there is a federal mandate for insurances to cover autism services, but there are many, many exceptions, and strangely enough, federal Blue Cross is one of them.  So there you go.  It's another example of what might be perceived by those outside of the autism world as "all those services out there you can get", which is reality either don't exist or are not accessible.

Despite the discouraged tone of this post, I am doing fairly well.  I am not dreading Christmas---I am actually feeling a bit of spirit, more than in the past few years.  Maybe it's because, as the song says, "I need a little Christmas"  Maybe it's because so many people have been so kind to me over the past year, and even when things are this tough, that has given me an inner resolve, an inner core that I am able to reach to most of the time.  Maybe it's the music, which even on Janey's worst days is one of her favorite things in the world.

Here's a picture of Janey's smile, from yesterday.  Her beautiful smile, even on days when I don't see it, is another reason I keep getting up on the morning.

Thursday, December 18, 2014

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.

Tuesday, December 16, 2014

Trying a School Day

Janey went off on the bus this early morning.  It's the first day she's gone to school in a month and two days.  The road leading up to today has been long, and I am not sure she'll be there all day, but I am hoping this is the start of a bit of normality in our lives.

Over the weekend, Janey was tough.  There was a lot of screaming and crying.  Sunday, she lashed out at Tony for some of the first times ever.  Usually he is spared her anger.  She hit him hard, and then tried to bend back his fingers.  As is more often the case, there was completely no warning.  She was just fine, not even upset, and then she lashed out.  It makes it all the more scary, because you can't brace yourself, you can't prepare a reaction.  It just happens.

We decided on Sunday that we couldn't in good conscious put Janey on the bus on Monday without talking to her school more.  I emailed her teacher and ABA supervisor, and amazing people that they are, they wrote me back on a Sunday to say we could have a meeting Monday at 9, and could bring Janey for a visit then.

Tony took Monday off to be with me.  We were worried how Janey would act as she saw the school, since her last memory there wasn't a good one---leaving in the ambulance.  But she was very cheerful as we approached.  We met with four people that work with Janey---her teacher, her ABA therapist, the ABA supervisor and the autism specialist that is assigned to her classroom group.  They are an amazing group of people.  They listened to all our concerns, we planned together how we would handle various situations, and we laughed.  That is a crucial piece for me somehow---that I felt at home and comfortable enough with these wonderful women that we could engage in a little black humor.  In talking about Bradley Hospital, I said part of why more didn't happen there might because Janey was there over Thanksgiving, and she should plan her next crisis for a little better time of year---I was full of weak humor like that, but it was so good to just be able to talk about it all in a relaxed and open way.

The plan we worked out---Janey would go to school on the bus today, and last as long as she was able.  If things were getting to be too much for her, and she was getting increasingly frustrated, the school would call me and I'd go get her right away.  We'd avoided that in the past to not give Janey the idea that acting out was a way to go home early, but at this point, that is one of the least of our worries.  If Janey's behavior ever was such I couldn't safely drive her home, I'd stay with her at the school as she calmed down, until it was safe to drive.  And if things escalated even more, and we again ever needed to call an ambulance, the school would talk to me first, and if we all agreed we needed to call, Janey would be taken to one of two other hospitals besides Children's Boston, hospitals we have realized are better equipped to handle kids with autism.

We discussed Janey's lashing out, and everyone is aware how closely she needs to be watched, and what the warning signs are for her outburst, and how sometimes there are no warning signs.  The school is ready and willing to work with her despite these issues, and that brought tears to my eyes.

So---we sent her this morning.  It was touch and go for a while.  She didn't want to wake up.  The bus comes early---about 6:20 this morning.  Janey fought getting dressed quite violently---taking her shirt off over and over, kicking off her shoes, screaming.  What finally calmed her down enough to dress her and get her on the bus was that old faithful---Christmas songs.  She started singing "Santa Claus is Coming to Town" and I picked up on it and sang it over and over, and then switched to "Jingle Bells" and "Joy to the World"  The familiar words and tunes seemed to make Janey able to calm enough to get ready.  By the time she got on the bus, she was smiling.  The driver and the two aides were so happy to see her and so kind and sweet to her.  We are feeling, as we often do, very lucky to be part of the Boston school system.

And so I wait, for a call to get Janey, or for her bus to bring her home.  I wait to see what kind of day she had.  We wait for the next crisis---hoping there never is one, but preparing and making decisions in case there is.  We keep on going, because that is what we have to do, and we try to be hopeful.

Sunday, December 14, 2014

The Month That Wasn't

It's been a month today since the day that I got the call from Janey's school, the call that they were calling an ambulance to take her to the hospital.  It's been a month that in many ways, I would like to erase from my life.  In other ways, it's been an important month---in some ways, even a good month.  But I think it's fair to say I hope I never have another month like this one.

Here's a little synopsis of the month.  Janey's behavior, which had been escalating for a week or so, got even worse on November 14th.  I rode with her as she went by ambulance to Children's Hospital in Boston.  In the emergency room, she was assessed and it was determined she needed hospitalization in a psych ward for children.  There were no appropriate placements available right way, so we spent 6 days at Children's as boarders, waiting for a placement.  We got one after those 6 days at Bradley Hospital in Providence, and Janey was there for 18 days.  She came home after that, when they felt she was stable enough to leave.

Those are the bare facts, stripped of emotion.  Here's some of the emotion.  The stay at Children's was hell.  I can never think of another word to use for it.  The 28 or so hours in the emergency room were the deepest, darkest levels of hell, and the next 5 days in a room on a kidney transplant ward were regular hell.  Janey wasn't able to leave the room, was periodically attacking the nurses, the sitters who sat in the room and me.  She screamed extremely often, asked frantically for one thing after another we couldn't do, and slept poorly.  I don't think I'd survive another 6 days like those.  The stay at Bradley was in some ways a relief and in other ways not.  The drive to Providence was often very, very tough, both in terms of traffic and in terms of giving us time to think what we were doing---visiting our precious daughter in a locked psych ward.  The visits with her were both wonderful, because we missed her so much, but also awful, because in what was a theme for the month, we were not supposed to leave the room with her, and she would quickly become bored of us and restless.  It would become a situation where either we saw her for far shorter than we wished or we risked setting her off into a spiral of a meltdown.  Having her home, although joyous, led us to see nothing had really changed.  Janey has been often very unhappy the 5 days since she's been home, although there have been good times too.  A few days ago, she attacked my father, in a frightening repeat of what started this whole time.

What has been good?  Well, we got a letter yesterday saying we had been approved for state supplemental insurance for Janey, so going forward, we might be qualified for help with therapy and things like pull-ups.  I need to work on getting that all set up, but it's something we probably should have done years ago.  Janey is off two of the three medications she had been taking, and we are seeing some improvement in her talking, which leads to the upsetting thought that she may have been overmedicated for a while, but in trying to be positive, also means she might be no longer overmedicated.  And the greatest good part--the absolutely overwhelming and incredible support, in so very many ways, from all of you, all my friends who read this blog---those I know in person and those I know through the magic of the internet.  You are a wonderful bunch of people, and you let me live through this.  I mean that with all of my heart.

What are our fears?  We have many fears.  The biggest is that Janey is going back to school tomorrow, if everything goes well.  Her school has been wonderful, and they are eager to have her back, but we truly feel everything might repeat itself.  I have no confidence Janey is going to be able to not repeat the behaviors that started all this.  We have realized places like Bradley are not set up to change the future.  They are set up to deal with children in crisis, during the crisis, and they do a outstanding job with that.  But they are not set up to change the child.  I am not sure it's possible to do that, to be fair to them.  I don't think I'll ever relax again while Janey is at school.  I will always be waiting for another call like that horrible one a month ago, a call saying she is out of control and they think she should be in the hospital.

I will close with right now.  Right now, Janey is happy.  She is having bacon that Daddy is making---bacon made by the best father in the world.  We are looking forward to getting a Christmas tree today.  We are together, our older son William will be home from college soon, and we will celebrate Christmas and look toward 2015 with hope.  And that is enough, for right now.

Wednesday, December 10, 2014

Joy and Lessons

Janey is home, and the overwhelming feeling we have, so far, is joy.  It is wonderful to have her home.  We realized, this past month, what a crucial part of our family she is.  She is our focus, our center, our mission.  Without her, I think all of us felt a little lost.  She is a huge challenge, a huge job, but most of all, a huge joy.

We have, however, learned a few lessons which are tougher to take than the lesson of how we need her.

Janey's release from Bradley was sudden.  Late last week, when both the school and I talked to the hospital, it seemed that her release was not going to be soon.  Then, on Monday, I got a call from the social worker at first asking how our visits were going and then telling me they were planning on releasing her the next day, Tuesday.  I had a huge mix of emotions.  First, happiness, but then, a little confusion and a lot of "what next?"  Yes, she had calmed down.  Yes, her medication had been adjusted.  Yes, the immediate crisis was over.  But most things had not changed.  Janey was still screaming often, biting her arm quite a bit, often upset.  We still had no respite.  We had no new ideas for dealing with Janey, no new plan.  There was not going to be any release meeting.  We didn't speak to the psychiatrist in charge---we had met him only once, at the intake meeting.  Basically, Janey was coming home because her mood had changed.  That is something that has happened at home, without a hospital, many, many times.  We could have done that here.

To play the devil's advocate with myself---we did get some respite.  We had the 18 days with Janey at Bradley, where we were able to sleep all night.  We were able to spend 18 days, when we weren't driving to Providence, doing the kind of things we haven't done for a while---mindless games, mostly.  We probably didn't relax as much as we should have during that time.  We were still in a bit of shock, and we still were thinking about her constantly, and driving to see her often.  But we did have that time.

However, I would have to say overall, I am still quite troubled by the state of our country's mental health treatment for children.  The Children's Hospital time, when Janey was a "boarder", was hell.  I don't have another term for it.  It was hell, hellish.  The Bradley hospital is a lovely place, full of kind people.  I know Janey was treated well there.  But it is an extremely short term solution, and in the end, it changed almost nothing.

There was a moment as Janey was being released when I was signing forms at the nurse's station.  The nurse and the social worker asked me if I had any questions.  I think they could see the look on my face, a look that was that was a mix of concern and something like internal laughter.  Yes, I had questions.  Just where do we go from here?  What I said was "We just wonder if you have some suggestions on dealing with Janey's difficult behaviors at home?" or something along those lines.  The answer was that they had sent a list of their strategies to Janey's school.  The social worker said "You know, we could send a copy to your house if you want!"  Um, yeah.  That might be good.  Although excuse me for saying I don't hold out huge hopes that the list will solve everything.

But I'll end here on a more cheerful note, one more appropriate for this Christmas season.  We HAVE learned something.  We have learned that we are the ones who are the experts on Janey.  It isn't like there are people out there who can tell us how best to help her.  We are the people who know that.  There are places she can go in times of extreme crisis, if we are able to first endure the horrors of boarding.  We have learned that besides that, one of our best allies is the Boston school system---who stood by us during all this, stayed in close touch and showed a huge level of caring for Janey.

And we learned how many wonderful people out there care for Janey---the readers of this blog and the friends we have made through the blog and throughout our lives.  We were blown away, stunned, overwhelmed, by all the thoughts, prayers, support through monetary help and kindness and love and offers to help and notes and emails and just plain love from all of you.  We might feel alone sometimes in dealing with Janey, but we are not alone.  Far from it.  Thank you, from the deepest parts of our hearts.





Thursday, December 4, 2014

A little Janey update

Janey has been at Bradley Hospital for two weeks tonight.  It is still hard to believe she is there, but I think we are coming to accept it and, if not exactly embrace it, to feel grateful she is being cared for at such a caring and loving place.  I'd encourage anyone with time and interest to look at this link----at the right side of that page, under the picture, there is another link that says "Read Legacy of Hope"  It's a PDF file I can't figure out how to link to, but it's a booklet that has pieces about some children Bradley has helped, along with a portrait and history of the hospital.  Janey is in the Center for Autism and Development Disabilities.  The book talks about how this section of the hospital was formed because there was almost no-place that could treat children like Janey, who were autistic and developmentally delayed, and who also had a mental illness.  It wasn't even thought in the past that could be possible, but it is, indeed.  They treat about 100 children a year in her ward, from all over the country.  I am starting to realize how lucky we are that they are relatively close and that they had room for her.

I talked a lot to Janey's social worker recently about how she is doing.  In some ways, she is doing much better.  She is lashing out at others far less, and that is great.  However, she is still doing a lot of the arm biting of herself.  That behavior has been tough for the past few years.  She said their counts show she does it about 40 times a day, which seems accurate.  She usually doesn't bite herself hard, but hard enough so she has a permanent callus on her arm.  She is also doing a lot of the screaming she does at home.  One thing I found very, very interesting and also sort of comforting is that although sometimes they can figure out what prompts the screaming, other times it seems completely inexplicable.  That is just what we had seen at home---that sometimes, there is no possible trigger we can see.

They don't yet have a timetable for her to come home.  That is hard, but I do very much appreciate that they don't want her to come home until she is ready.  I think I'd heard so many stories about people being rushed out of psych wards that somehow I had the time frame "two weeks" strongly in my head as some kind of maximum, but that doesn't seem to be the case here.

We have settled into visiting Janey every other day.  That seems to work best to balance our major desire to see her with how the visit are for her.  She always seems very happy to see us, but she is ready for us to go after about a half hour or 45 minutes.  This is partly that she doesn't want to stay in her room, where the visits take place, but I think also partly that she is eager to join into the activities going on outside the room.  The program keeps her extremely busy---there is something planned for every minute, and I have come to realize how much she needs that.

We are starting to think about how we will do a few things differently when she comes home.  I am going to work on having a schedule for Janey, and on having vigorous exercise as part of every day.  She has been sleeping through the night at the hospital, and although we aren't going to be able to completely recreate her bedroom there, which is almost all empty and not on a busy street in a small apartment, we are going to work on her sleep.  I like very much how the social worker and others at the hospital are careful to say that they know home is different than the unit---that home isn't and shouldn't be the same as the hospital, but at the same time we are able to get good ideas from them.

I worked through in my mind what my two biggest fears about this whole situation were.  One is that Janey would somehow never come home---that this was the start of her not living at home.  Talking to her social worker helped me see that is not what they are going to recommend.  Nobody had said that was the plan, but it was a fear I had anyway.  The other fear was (and is, to some extent) that this all would happen again and again and again.  I felt somehow the worse possible thing would be Janey coming home, getting upset again in a month or two and then having to go through the whole thing again.  In talking to a few people, I was comforted on this in an odd way---by learning that a lot of kids do have to go back to hospitals several times.  Not all do---sometimes it's a one time thing, but some kids going through adolescence do have a few years where they need a lot of extra help.  Somehow knowing that although it can happen, it's not unheard and not the end of the world, helped, although I'm not sure why.  Maybe it's just always better to know what might happen than to just worry about it.

I miss my Janey every minute.  I know she is where she needs to be right now, and I am trying to use this time to rest and to have a little break from 10 years of constant vigilance to ensure her safety, but I still miss her a huge amount.  She is part of us---she is a huge part of who we are as a family.  And I am gradually learning that getting help to keep her safe and happy is not going to change that.

Tuesday, December 2, 2014

What it's like to visit a psychiatric hospital

Having Janey at Bradley Hospital, visiting her there, felt at first like something no other parent in the world has ever done.  However, when I thought about it more, I realized I can think of four other parents I know who have been in this situation, who have had children at psychiatric hospitals. Although I don't ever want anyone else I know to have to go through this, knowing that others have lived this somehow helped a little.  I won't tell their stories, what I know of them---they aren't mine to tell.  But I thought I'd describe what it's like to visit Janey in more detail, just in case any of you ever do have to live this.  You won't find this story in the cheery pages of parenting magazines.  The other mothers volunteering at the school or with their kids at the playground probably won't be chatting about this.  But it happens.

Driving to see Janey takes a varying amount of time, depending on traffic.  It's been as quick a drive as 50 minutes and as long a drive as two and a half hours.  During the drives, Tony and I listen to the radio, a classic rock station I don't know if I'll ever be able to listen to in the future, as it will feel forever associated with this time in my life.  But for now, it helps.  We can talk about the songs instead of our lives right now.  Often, Tony has worked all day before we drive, so I try to keep talking, to keep him alert.  But sometimes, there feels like there is little to say.  We cry now and then.

When we reach the hospital parking lot, every single time I get a strange feeling in my stomach.  It's a dread feeling, a scared feeling, a odd feeling I don't think I've ever felt in other situations.  I've felt dread and fear plenty of times, but this is different.  No matter how much I think I'm prepared for the visit, no matter how much I try to feel upbeat, it hits me.  I don't want to be here.  I want to see Janey, desperately, but I don't want to go in there.  It's not that it's not a nice place.  It's a beautiful place---clean, as friendly as it can be under the circumstances.  But I doubt anyone really wants to visit a psychiatric hospital.

When we park, I leave my pocketbook in the trunk.  You can take almost nothing in with you---no cameras, cell phones, watches, things like that.  I get my licence out.  We go into the waiting room and go to the desk, to tell them we are there.  We give Janey's name and our names, and show them our driver's licences.  We get visitor stickers.  Then we wait for someone to come get us.  The waiting room has lots of magazines and comfy chairs. But I hate being there.

After a few minutes, either someone comes from Janey's ward to get us, or one of the receptionists takes us to her ward.  To get there, three different doors need to be unlocked--that is why we always need to be escorted.  Outside the final door, there are lockers, and there Tony puts his car keys, switching them for the locker key, and we put anything else we might have that can't go into the ward.  Usually all we are carrying in is a bag of clean clothes for Janey.

When we get inside, we are in a big common room.  It's open and airy and nice, but it somehow doesn't seem like the kids spend much time there, at least when we visit.  We sign in there, and are taken to where Janey is, which usually is a smaller room near her bedroom.  There are two sections to the part of the hospital Janey is in, with a total maximum for both parts of 19 children.  Here's a link to more information, if you are interested.  The smaller room has tables and a television, and there are usually more adults working there than there are kids.

Janey generally spots us quickly, and looks happy to see us.  That's the best part of the visit---her smile when we get there.  My heart leaps every time I see her after being away.  Last night, we both felt she looked taller and older, even after seeing her just two days before.  It is so strange to see her there.  We take her into her room.  All the visits take place in her room, so we don't disturb the workings of the ward or the other kids.  The room has a bed, a table and a chair.  It has a closet which is usually locked, but which they unlock for us so I can get her laundry and put in her clean clothes.  There is a bathroom which is for her and a child on the other side of the bathroom.  Only one side is unlocked at once, so she has in essence a private bathroom.

Our visits are not as long as I wish.  We usually stay about a half hour to an hour.  We leave when Janey starts get restless, hopefully before she gets frantic.  We have not been able to spend time with her outside of one room for two and a half weeks now.  I think she is starting to see time with us as the boring time.  It gets hard to entertain her.  We play catch with her Care Bear, we sing songs, we tell her what is going on at home, we try to keep her engaged.  She asks for singing---last night she said "Christmas songs?" and started singing "We Three Kings of Orient Are" to prompt me.  She asks us for things we don't have there---cookies, bacon, chicken nuggets, fries, chips.  We never happen to bring the right things.  Eventually, she starts asking to take a walk.  We can't walk around with her there.  She starts to show signs of getting anxious, and eventually we reach the point where we know it's time to go.  We take her back out to the workers and say goodbye.  Sometimes she gets upset when we leave, and asks to go home with us.  Other times she seems relieved we are going.  I am not sure which is harder to take.

Usually, someone walks us out to the front desk, although a few times we've walked ourselves out.  We give back the visitor stickers  On the drive home, we analyze the visit.  We talk about how she seemed---calmer?  Happier?  We think about how things will be when she's home.  Then, we concentrate on getting home safely.  There's a part of the highway, near Pawtucket, which seems to be a center for cars chasing each other in some scary highway race, and we brace to drive through that.  Sometimes, we stop to get Freddy fast food on the way back, as we often don't have time for dinner before we leave.  We get home, exhausted.  We spend time with Freddy, the one child home right now, the child who is almost an adult.  We breath, and we get ready for the next visit.

Saturday, November 29, 2014

Once you notice you've walked off the cliff

In cartoons, often characters walk or run off cliffs, being chased or chasing someone.  In their world, unless you look down, you don't fall---you run along nicely in the air.  It's only when you notice you've left solid ground that you fall.  I've been feeling like we've looked down, and we are no longer able to walk on the air.  We are thinking non-stop about when Janey comes home, and how we will be able to keep running now that we've noticed we are off the cliff.

I tend to wait until the last possible moment to seek help.  When I was pregnant with Janey, and taking the supposedly safe for pregnancy blood pressure medication Aldomet, it took a week of even increasing severe signs of allergy and reaction for me to finally realize I needed medical attention.  By the time I did, I had a high fever, a very low white blood cell count and a liver that was showing signs of severe distress.  That reaction, at 12 weeks into my pregnancy, is one of the prime candidates in my mind for what might have caused Janey's autism.

With Janey's increasing agitation and aggression to others and herself, I feel like I again waited too long to realize how bad the problem was becoming.  In fact, I'd probably have waited forever, had the school not pretty much insisted I take her to the hospital.  By the time we did, two weeks ago, it was highly apparent to almost everyone that there was a serious problem.

Why am I like this?  Part of it is a fear of crying wolf, of saying there's a problem beyond what there really is.  Part of it is a feeling that our children are our own responsibility, that we need to care for them on our own, without help beyond school.  And part of it is denial.  If you don't want there to be a problem, you don't seek help for it.

But now, we have looked down and seen we are in a tough position.  I don't know how long Janey will be at the Bradley hospital.  I got another of the letters today, the ones I am supposed to not worry about, saying she was approved to stay two more days, until the 27th, which is of course two days in the past.  We miss her so much, but we also see they have barely had a chance yet to really get to know her.  They have eliminated two of her medications, which hopefully will help, but nothing new has been added, and we don't know any new techniques to handle her.  When she comes home, I have no real reason to think she won't still be hurting herself and others.  And what do I do then?  I'm certainly not taking her back to Children's Hospital to start another round of waiting for a placement.  I think that would hurt her, and us, more than anything.  She could not take another period of time shut in one small room.

I am scared.  Not scared of Janey, although I don't like to have my hair pulled and my eyes gouged at and my hands bitten, but I can handle that if I need to.  I am scared FOR Janey.  I am scared of what the future holds.  Will it be an endless round of cycles of calm times and then horrible times like the past month?  Will her school still be able to handle her?  Will we?  What will become of us all?  that is what I wake up in fear of.

I said, before this all happened, in a post the day before she went to the hospital, that I wasn't sure there was any help out there.  Now, I see that there are places like Bradley, places besides home and school that can delight in Janey while dealing with her difficult behavior.  However, her time there is very limited, even if she is able to stay the few more weeks I hope for.  

I don't know what is going to happen next.  I don't even know how I'm going to pay all the bills from this current go-round (although this GoFundMe site has made that much less of a worry---have a look here if you are interested)  I want to think Janey will come home my same wonderful girl but with changed behavior, and it will be changed for good, and we all will live happily ever after.  But I don't think so.  One clue to this is how often we have been asked "Is this her first hospitalization?"  I guess there usually isn't just one.

If this whole experience teaches me anything at all, it's going to be to seek out and accept help a little more readily.  Even if it seems like help isn't available, I can see that might be at times because I am extremely resistant to ever saying "I can't do this any more".  I still am.  It makes me cry to think of our family not being able to care for Janey on our own.  I hope we can.  And even if we can't, I'm not sure we have a choice.  I think sometimes I need to stop looking down, to just keep on walking on the air.

Thursday, November 27, 2014

Thanksgiving 2014

It's hard to remember too many specifics from Thanksgivings of my past.  Thanksgiving isn't usually a day that stands out in memory---the best Thanksgiving seems like the ones before it, in a good way. However, I don't think I'll ever forget Thanksgiving 2014---waking up without Janey here, driving to visit her, coming home without her.  I also won't forget it because of how grateful and thankful I feel.

It was strange to wake up this morning to a house without Janey, as it's been strange for the last week. Everything seems oddly quiet and calm, and I have been waking up after sleeping all night long, something that has rarely happened in the last 10 years.  I miss Janey horribly in the morning, though.  It feels wrong to have her gone.  I have my morning coffee, but somehow it feels unearned.  I've cut back to one cup most days, which is a huge cutback.

Freddy went to see his last Thanksgiving Day football game as a Boston Latin student, and we had a non-eventful morning---no kids TV, no Janey asking for bacon, no monitoring her movements and anticipating her moods.  I am trying hard to accept the respite and to let myself enjoy it, knowing she is safe and cared for, and for brief periods of time, I am succeeding.  But it's been so long that our life has had her as a focus, everything feels a little empty.

We had a Thanksgiving meal for 4 around 1.  We are not big eaters of traditional Thanksgiving Day fare---we had a roasted chicken, but with purchased turkey gravy, and some strawberry shortcake.  We said what we were all thankful for, but didn't have Janey to coax to say something.

After we ate, we drove to Providence to see Janey.  Every time we get to the hospital, I feel a knot in my stomach.  It's not because it's not a nice place, because it is.  I think it's just the feeling of going to see my child at a psychiatric hospital.  It feels like I have somehow stepped outside of the world I know, and entered a different world.

Janey was very happy to see us, all four of us.  She hasn't seen William for a long time, since he was at college.  She gave us a huge smile, and we went to her room.  We had brought her lots of food for her special meal, and she ate a huge amount of Daddy's pesto, some purple onions and lots of chocolate chip cookies.  We sang to her, and played catch with her Care Bear.  She talked very little today, but seemed very pleased we were there, at first.  Eventually she got tired of being in the room and eager for more action, and when we asked her if she wanted us to say goodbye, she repeated emphatically "GOODBYE!"

We took her out to the staff people, who said they would take her to join her group in the occupational therapy room.  Janey had gotten a bit agitated by then.  She kept grabbing our hands and saying "Take a walk!"  We explained we couldn't, but her friends there would take her for a walk.  She started yelling "Goodbye!  Goodbye" but trying to go with us.  The staff distracted her, and we said a final goodbye and left.  My heart was a bit torn up.

And now---Thanksgiving night.  I am going to try to rest and not worry.

It has been a strange Thanksgiving, but it has also been a very good one, in that I know more than ever how much I have to be thankful for.  I have my family---my husband, who has been incredible through all of this, my wonderful boys and my Janey---my girl who has my heart, and both warms it and breaks it so easily.  And I have my friends---and I count all of you reading this as my friends.  You have been INCREDIBLE.  Your support, here and on my Facebook page, is what has kept me going many a long day.  You have made me feel like sharing my story has helped YOU, when it is YOU who has helped me.  My dear friend Jamie has reached out to get help for me with bills and expenses---something I never, ever expected but I am very, very grateful for.  I have talked to many of you, in person, by phone or by email or Facebook message, and you have supported me so hugely.  So many people I've never met in person have shown their caring for my family and me.  I know more than ever that there are so, so many good and caring people in this world, and I am very thankful for that.

I wonder what Thanksgiving 2015 will look like.  I hope Janey is happier, calmer and most of all we are all together, that Thanksgiving and every Thanksgiving from here on for the rest of my life.

Wednesday, November 26, 2014

Visiting Janey

Bradley Hospital, where Janey is being held, is in Providence.  In ideal conditions, it could be a 50 minute drive from our house.  However, anyone who has ever driven in or around Boston knows that those ideal conditions exist only at the rarest of times.  In some ways, the drive to get to Janey seems like a metaphor for so much of the last few weeks---frustrating, exhausting, yet crucially important.

I'll give yesterday as an example.  Tony went in to work extremely early, so he could leave at 2 and we could get an early jump on going to see Janey.  We left the house right around 3.  When we got to where we get on the highway (about 10 minutes from our house), we could see it was almost completely gridlocked.  There is s storm predicted for today, and Boston is full of college students and others who want to go elsewhere for Thanksgiving.  So Tony made a change and got on some local routes.  We used our GPS, which seemed intent on giving us a tour of southeastern Massachusetts.  After a long time, we made our way back onto the highway, and proceeded to creep toward Providence, at 10 miles an hour.

Finally, we got past an area where bridge work was being done, and we were able to make some time.  Regardless, the drive to Bradley took two and a half hours.

We had agreed a few days ago to be part of a major study of autism while Janey was at the hospital.  I spent a big part of yesterday filling out about 10 long forms about Janey's behavior.  We had agreed to have blood drawn last night.  By the time we got there, the woman we were going to meet with was gone, but a head of the study and the blood-drawer had stayed late to get the blood.  We explained the traffic, and I hope they understood, although Boston traffic seems to be something very Boston, which although Providence is quite close, they seem somewhat mystified by.

After having the blood drawn, we had to go back to the waiting room to wait to see Janey.  We were told she was a bit upset and we'd have to wait a minute or two.  When they came for us, they said she had been taking off her clothes again, and asking to go to sleep, as she often does at home, far too early.  They calmed her down and she was waiting for us in her room.

The visit on Monday was great---Janey was calm and happy.  Last night, she was less content.  It was nothing like the scenes at Children's, but she bit herself a few times and at one point half-heartedly pulled my hair.  She also did the repeated asking for things "Want chicken nuggets?  Want to take a walk?  Want water?"  We finally resorted to singing---we sang her a mixed medley of her favorite Beatles and Black Sabbath songs, Black Sabbath being my older son's favorite group.  We modified words as necessary!

After about 40 minutes, though, Janey wanted more action.  We aren't allowed to visit with her outside her room, and she wanted to get out.  So we said goodbye.

Before we went home, we needed to drive to Waltham and pick up William at college, so he could come home for Thanksgiving.  We were thrilled to be getting him home, but tired beyond belief.  The traffic was okay on the way back, but not perfect.  We took local routes home, and finally got home about 9:30.

When I got in and checked the mail, there was a badly photocopied 5 page letter from something called something like Value Health in Rhode Island.  It said they had authorized a 5 day stay for Janey at Bradley, and that any longer of a stay would have to be arranged by the hospital.  I am assuming that has been done, as today would be day 6, but I am not sure at all.  In my hazy state, the form was hard to understand.  We have Blue Cross, so I am unsure why some other agency is the one to decide on Janey's stay.  There was no number on the letter.  Instead, there was a form for JANEY to fill out to authorize me to get information on her behalf.  I need to read the form more today, but a quick look last night said this had to be done even if the patient was a minor.  I need to make calls and try to figure out what is up with all of that, but I have a feeling the day before Thanksgiving is not a good day to reach the right people.  I also know my mind is not in a great place for figuring out complicated letters and forms.  I assume the hospital would let us know if the funding for her stay had ended, but I have nightmares of multi-thousand dollar bills arriving.

And that is where we are.  Janey is calmer, but far from all the way back to what I am learning is called "baseline".  We are tired and stressed almost beyond functioning, worried about Janey and money and what comes next.  Today the weather will keep us from visiting, it seems, and although the drive is a nightmare, it kills me to think of a day without seeing Janey.  Nothing feels settled, nothing feels calm.  And I wonder if it ever will again.

Monday, November 24, 2014

On Not Following the Script

I had a dream last night (and I feel compelled to say to my dear friend Julie, as I always do when talking about dreams, that she is free to skip this reading, as she hates to hear about people's dreams) about being in an English class.  The teacher had asked me to write a script, a short play, and I had spent the whole weekend doing that.  In the class on Monday, the teacher was supposed to have the class read through the play.  However, he didn't---he did something totally different in class.  I got upset, and yelled at him, screamed he wasn't doing as he said he would do.  I acted in a way I don't act, except in dreams---I spoke up loudly and told him how angry I was.

I do think most dreams are random, but in reflecting on that dream this morning, I saw something I recognized.  I was taken back to another time in my life that, as now, the normal script seemed to have been completely abandoned, replaced by what feels like a horrible ad lib.

When I was pregnant with my first child, I avidly read everything I could find about pregnancy and childbirth.  I love to read, and I had a faith that everything I could need to know was contained in books.  At that point, the most popular book around was "What to Expect When You're Expecting".  It had a firm tone.  It told exactly how things were supposed to go, how you were supposed to act and eat and exercise.  Once in a while, it had off-hand mentions of rare, rare exotic and vaguely shameful things that could go wrong, but they were stressed as the exceptions.  I liked that.  I was going to do everything right.

Well, it didn't work out that way.  William was born at 7 months, weighing three and a half pounds.  I had developed severe pre-eclampsia, and his life and mine were at stake.  I could have easily died, taking him with me, just as I learned had happened long ago to my great-grandmother, while giving birth to my grandmother.  We found her death certificate online, showing she died of eclampsia the day after having my grandmother.  Thankfully, modern medicine kept William and me alive, but I was thrown into the world of parenting outside the script in a most stunning and abrupt way.

Many things with this current situation feel like 20 years ago.  Then as now, I had a child held in a hospital, one I could only see by visiting.  Then as now, before we visited, we were supposed to call nurses to make sure it was a good time.  Then as now, the visits took a drive---then through crazy Boston streets, now south down a long highway.  Then as now, it felt like I had left some script, that was ad-libbing, doing improv, living without a map.

I think one of the very hardest parts about parenting a child like Janey is that we feel so outside the script.  Ten year old girls are supposed to be in 5th grade, getting ready for junior high.  They are supposed to go to sleepovers.  They are starting to make the friends that will remain friends for life.  They are reading books like the Little House series.  They might keep diaries, or play sports, or collect a certain toy avidly.  I remember being 10.  Ten was the start of life in a lot of ways.  Ten year olds are not supposed to be in locked psychiatric wards because they were hurting themselves and others.  They are not supposed to be talking mostly in movie quotes.  They are not supposed to be non-toilet trained.  The script has been completely abandoned.

And yet, I am finding, as I get older, that almost nobody follows the script exactly.  Almost everyone you truly get to know has parts of their life that are off-script.  Some had a childhood of horrors they are still processing.  Some have lost children in heartbreaking ways.  Some have their own illnesses, mental or physical, which take a huge toll.  Almost everyone lives a life that in some way doesn't fit into the confines of the cheery, authoritative tone of the What to Expect books.

It's the scariest part of life knowing that there really isn't a script.  But there is comfort in knowing, for me, that it's the same for everyone. We all muddle through to some extent, and the best we can do is keep on ad-libbing to the end.

Sunday, November 23, 2014

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.

Saturday, November 22, 2014

Our Experience with the Mental Health Boarding Crisis

If you are one of the regular readers of this blog, you are probably thinking "ANOTHER post?  I am not up to ANOTHER post!"  Please feel free to take a reading break!  I will not be hurt!  I just feel so compelled to get down the details of this story before they leave my head.

So---what is boarding?  In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home.  There are far too few psychiatric beds in this country, most especially for children.  So children wind up boarding at hospitals.  I was often given two weeks as a common amount of time to be boarding.  There is an article here especially about this crisis in Massachusetts, but it exists all over the country.

I think I'd vaguely heard of boarding before last week, but didn't really get it.  I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.

In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis.  You, or your school, have no idea how to handle them.  They are becoming unsafe to themselves or to others.  In the crisis, you take them to the ER.  The ER assesses them, and somehow is able to  help them, within the time frames you'd expect for other medical crises---a few hours to a few days.  It's not fun, but it's in line with something like appendicitis or a bad case of the flu.

I'll use Janey's case to illustrate the reality.  She had been having a tough week.  Things escalated Friday at school.  The school rightly called an ambulance.  Janey was taken to the ER about 1:30 pm.  Her vitals were checked, we told our basic story.  We finally saw a psychiatrist about 5 pm.  The psychiatrist determined that Janey needed to get more help.  She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.

I've written about the time in the ER.  There were no spaces available.  So, after a 24 hour hold, Janey was admitted to Children's Hospital.  She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants.  The nurses there were not psychiatric nurses.  The room was not set up for a psychiatric patient.  They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer.  And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey.  The hospital checked three times a day for a spot.  On Thursday, around 8 pm, we finally left by ambulance, after 6 days.

Those are the bare facts.  The reality was, well, hell.  Janey was not allowed to leave her room.  I understand the reason for that.  She wasn't stable, and she could hurt other patients.  But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least.  Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times.  These people are called "sitters"  In theory, that is a good idea.  It's a second set of hands, someone else to keep an eye on the child.  In practice, well, it makes things a lot tougher, actually.  The sitters varied.  Most were well-meaning, but mostly they did what the name says---they sat.  They sat in a chair and did nothing.  They didn't play with Janey or help in any way.  We were not supposed to leave Janey alone with them, so we still needed to be in the room with her.  They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up.  They became one more person in the room to protect from being hurt.  We were unable to talk to each other with any candor.  I felt I had to make conversation at least a little with the sitters to not be totally rude.  They were an added source of stress for certain, although I know they didn't mean to be.

When Janey's behavior escalated in the hospital, we tried to handle it ourselves.  If she got more upset, which probably happened about 10 times while there, we called the nurse.  That was the procedure.  The nurse could do little to help.  She would call the psychiatrist on call, or what was called the behavioral team.  The only real response they had was to give Janey more medication.  There wasn't much else that could be done in the confines of a hospital room.  A few days, Janey wound up overmedicated and groggy.

Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding?  I have a few ideas.  The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room.  Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help.  With sitters, either train them better or make them optional.  Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time.  Give the parents an hour of respite now and then.  I was lucky to have my friend Maryellen help me several days with Janey.  Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese!  In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us.  Seeing her friendly kind face quite a few times during our stay was wonderful.  She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats.  I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.

The United States is one of the richest countries on Earth.  It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues.  Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace.  I hate to be that blunt, but that is the reality.  One child having to "board" ever is one child too many.

Friday, November 21, 2014

Third post of the day!

I've never written three posts in a day before now, and I don't think I ever will again, but I wanted to write about visiting Janey at Bradley Hospital while it was fresh in my mind.  I'm blogging lately for myself as much as anyone, to remember these eventful and challenging days accurately.

The couple pictures here are ones I found on the internet of Bradley.  You can't take pictures there yourself.  The room looks very similar to the common room of the ward Janey is on.  I'm not sure it's the exact same ward, but you can get an idea how nice it is.


We called this morning to make a time to meet with the staff at the hospital, and agreed on 11 am.  We left about 10, thinking the drive was an hour, but it was actually more like an hour and 15 minutes, which was fine, but good to know for the future.  It's a pretty drive at the end, through Providence, a city I've never spent much time in, although both my parents and my sister have lived there at points in their life.  It's great the hospital is south of Boston instead of north of it, as that avoids the horrible traffic that driving through the city always involves.

When we got to the hospital, we had to show ID at the main desk and wait for someone to come get us.  Everything is very, very secure there, which we don't mind at all.  It was striking at Boston Children's Hospital how very UN-secure everything was.  It was only on the weekend you had to show any kind of visitor's badge at all.  Anyone could walk into any room there pretty much unchallenged.  But at Bradley, that would not happen.

The social worker assigned to us came to get us, and we went into a meeting room.  There we talked for a long time to quite a few people---the psychiatrist that has been assigned to Janey, a speech therapist, an occupational therapist, someone I think was a behavior therapist and a few more people whose roles I am not sure about right now!  They asked us many, many good questions about Janey, things like what upsets her, what calms her, what her speech is like, how her behavior has recently changed, what medications she takes, how she is at school, how her sleep and eating area---all that.  Everyone was very understanding and respectful.  The process felt unrushed, unlike anything at all at the regular hospital.

After the long talk, we went to the ward to see Janey.  We had to put our things into a locker---my pocketbook, Tony's jacket, a clipboard---you can't take much of anything in with you.  I did bring in a big bag of clothes for Janey.  Once in the ward, we had to sign in again.  And then we saw Janey!  She looked very cheerful.  There was a relaxed smile on her face we hadn't seen for several weeks.  It was wonderful to see.

The rules of visiting are that we have to visit with Janey in her room, not in the common area.  Therefore, we stayed just a minute, because I couldn't bear to have Janey shut in a room again.  She was happy being active, and it was the middle of their day there.  She was about to have arts and crafts with other kids.  So we put away her clothes, gave her a few big hugs and said goodbye.

The hospital is very strict about talking to other children.  We saw a few boys who are on the ward with Janey, but the rules are that you can greet them if they greet you, but can't talk to them otherwise.  I can see the reasons for this, although I would love to get to know other children like Janey a bit more.

We got the feeling that Janey is already winning over the staff.  They had a few cute stories to tell about her already, including how they did the "Turkey Pokey", like the "Hokey Pokey", and that Janey loved that and did an impromptu solo dance and song after it was over.  I can see Janey being very happy there.  They will keep her busy and give her attention.  I think the question will be more---will this carry over?  Will we get help and ideas and medication changes and so on that will help us once she is home?  I am going to try hard for right now not to think about that, to just be glad she is in such a great place and to try to relax at home.  This is the respite we had wanted.   Not in the way we ever wanted to get it, but I still need to use this time to regroup mentally---between drives to Rhode Island.  I am certainly going to sleep well tonight, and I hope Janey does too, a whole state away from me.

The Long Day's Journey---Part Two

After we got the news that Janey would be going to Bradley Hospital, we started packing up the room and getting ready for the call that is was time to go.  We were told it would be a few hours, probably into the afternoon before we went, which was fine.  Janey wasn't having a good day.  Maybe just the change in the mood and the moving around of the stuff in the room upset her.  She was screaming a lot, very agitated---not happy.  Our "sitter" for the day was the same one we had had on Sunday.  On Sunday, she had been one of our least favorite sitters.  This day, however, after we took a while to talk to her, we found her to be a wonderful woman---warm and understanding and interesting.  It taught me something I need to be taught over and over in life---that first impressions aren't always right.  She told us she was praying hard for Janey.  I am not much of a prayer, but I am a huge appreciator of people praying for me, and I was touched by her saying that.

As the day wore on, it was apparent that Janey's discharge was taking longer than anyone had said it would.  Finally we were told there was some kind of hold-up with the insurance, but that it would be taken care of and we shouldn't worry.  Well, I worried.  A nurse once again checked with the referring department, and they said it wasn't the insurance, it was that they were waiting for a call from Bradley, and she suggested I call Bradley myself.  I did, and they said it WAS the insurance---that they had not yet gotten the authorization.  I told that to the Children's Hospital people, and they said not to worry again.  I decided to call our insurance myself.  That was not a fun call.  The department that deals with our particular brand within the brand closes at 4:30pm.  I called about 4:35, and although the woman I reached was very kind, she said there was no way at all she could access those records.  I told her we could lose a placement we had been desperately waiting for, and she was very upset, but I don't think sincerely could do anything.  I started calling every number on my card.  I finally reached someone who might have been able to help.  At that moment, a nurse found me and showed me a wonderful set of numbers--the authorization had come through.

The next wait was for the ambulance to take Janey to Rhode Island---about an hour's drive.  It's a little unusual for people to be moved medically from Boston to Rhode Island.  Usually it would be the other way around.  So it took a while to get the ambulance.  In the meantime, Janey was very upset.  At one point, she suddenly lunged at and bit the sitter.  The sitter was great---she said it was nothing, that Janey was sick and we should not worry about it.  But word got out and the nurse in charge told the sitter she had to go report the incident to the hospital police and then go to the workman's comp office.  The sitter tried to say the bite had not broken the skin and there was no need, but the nurse insisted, so the sitter left and I never really got to thank her.  She was the last sitter we had---I guess since we were leaving, it was no longer considered necessary.

Finally, about 8 o'clock, we got an ambulance.  The EMTs were wonderful.  EMTs must be a special breed of people---they always seem great.  Janey was thrilled to be leaving the room.  She got onto the gurney very willingly, and was happy and alert almost the whole long trip to Rhode Island.  I saat behind her, so she couldn't see me, and I did have to reassure her several times that was there.  But overall, the ride was great.  We arrived at the hospital about 9.

My first impression of the hospital, in the dark, was that it was much bigger than I pictured---all kinds of buildings.  We were ushered into the admitting lobby.  A security guard checked us for metal and took my bag to inspect.  We didn't mind that at all---it kind of felt reassuring.  The lobby was lovely---a gorgeous room, and we were met right away with lots of people.  There were a lot of preliminary questions to be asked, and paperwork to be done.  Janey was mostly happy, although she did bite herself a few times and once lunged at Tony, so it was seen why she was there.

One funny moment---I guess to certify that Janey was being admitted voluntarily, since she is 10, if possible they wanted her to sign a form saying she was there willingly.  Janey can make a "J", and occasionally write the rest of her name if she is in the mood.  We got the form and explained it to her---I am quite sure she didn't totally get it, but she took the pen and made a big "J" all over the paper.  And that counted.  Janey's first signature of a legal document!  Thanks to all the teachers who taught her to write the J!

After a bit, a nurse came to take Janey to her ward.  We stayed behind for a bit, signing a lot more papers.  We learned a bit about her ward.  It holds in total up to 18 kids, in two wings.  Right then, there were 16 kids including Janey.  And were were told that at the current time (even then at night) there were SIXTEEN milieu therapists.  Milieu therapists was a another new term for us.  Here's a definition---Milieu Therapist  That is an amazing amount of hands on help!  We were starting to realize we might be in a very good place.

We went to say goodnight to Janey in the ward after that.  She had been given a room, her own room.  It has a nice bed and a comfy chair, and a bathroom next to it.  We were told someone would stay outside her door until she fell asleep.  She was happy and excited.  When we said goodnight, she waved dismissively and said "goodbye!"  She has never been one to have a hard time separating from us, which in this case was good---we were able to leave without breaking down much.

The ride home continued the theme of the week---being stuck.  We had a nice drive for the first 45 minutes or so, although we were both beyond tired.  Then---nothing but brakelights.  Something had stopped traffic on Route 95.  We sat totally stopped for over an hour.  We finally turned off the car and just waited.  We called my sister in Colorado to see if she could look on line what was happening, as we don't have any smart phones, just dumb phones.  She figured out the problem was something to do with downed wires.  Finally, traffic started again and we finally got home about 1 am.

We slept very soundly last night!  Now we are about to call to see what time the hospital wants to meet with us today.  We are going to meet Janey's psychiatrist and start working on a plan as to what happens next.  I am feeling hopeful, but still---overwhelmed, nervous, scared, stunned.  I think she is in the right place, and I think we are on our way, but it's going to take a while for me to be able to really feel less than on full alert.  It's been an experience so far like none in my life, like no experience I ever expected to have in my life.  And it's a journey that is going to continue.