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.