Never Again

 Let's imagine, for a minute, that your child had an illness.  It is a serious illness, enough so going to school has become very troublesome, so that they scream much of the day, so they don't sleep, so they are in obvious pain.  Let's imagine this illness is physical, not what we call mental.  Imagine that everyone agrees the child needs help, urgently.  What would you do?

You'd probably go to the hospital.  So let's picture a scene there.  The hospital agrees you child is very ill, and needs longer term hospitalization to deal with this illness.  However, there are very few hospitals around that treat this particular form of illness, and they are full.  There might be an opening in a day, there might an opening in a week, there might be an opening in a month.  It might be longer than that.  

Let's say the hospital says, that despite the fact they themselves can't treat the illness, your child needs to stay there until there's an opening at the specialized hospital.  You can't take them home and care for them there, even if you feel able to, because then you'll lose your place in line for the specialized care.  

You are in the ER, being told this.  There might be a room available at the hospital that can't treat your child but insists on keeping them there.  Or there might not be, in which case you first must just stay in an ER room until a regular room is available.  This might be for a few hours.  Or it might be days.

When the room, essentially a waiting room, is available, you are moved there.  And told your child can't leave that room, for any reason, until you get a bed at the specialized hospital.  You aren't going to be treated there, aside from having your child's vitals taken every four hours.  You are just going to wait.  And while you wait, there is going to be someone posted in your room, someone called a sitter, who does just that, sits there around the clock watching you and your child, to make sure they don't leave the room.

Because there are so few openings at the specialized hospital, you wait and wait and wait.  You wait there, despite the fact your child is very ill, just waiting.

When finally, finally, there is a space for your child (and the specialized hospital accepts them---decides they are the right age and sex and type of child they want, which is totally their decision and based on rules you aren't told), your child is moved, by an ambulance ride, to the specialized hospital.

When you and your child get to that hospital, you are told you have to leave them there, alone.  You can visit, but there are very strict rules about your visits, what time they can be and how long they can last.  But you breath a sign of relief.  Finally, your child is going to get some help.

Except they aren't.  The hospital houses them there until insurance will no longer pay for them to be there.  Then they tell you the stay is over.  They don't give you any advice for how to treat the illness at home.  They don't talk to your child's school about how to treat the illness.  They might give you a new medication, which might or might not help, but they don't follow up on if it does.  When you take your child home, they are no better than when the whole ordeal started.  You beg the hospital for at least some guidance.  They send you a report with generic information, information you have long ago read on the internet.  In places where your child's name is mentioned in the report, sometimes it's the right name, sometimes it's a whole different child's name, because the whole thing is cut and pasted badly.  

And your child is home.  Worse for wear, as are you.  Stunned, overwhelmed, horrified.  And you have learned one valuable lesson.  Don't take your child to the hospital looking for help with this illness. Ever, ever again.  

If you haven't figured it out, you are probably saying "That would never happen!  Our society would never treat a sick child that way".  But you probably have figured out this story is Janey's and our story, and the illness is not a physical one, but a mental one, a flare up of symptoms related to her autism. We lived this story.  You can read about it starting with this entry ( here's the link ) There are a long series of them, giving pretty much every detail of the ordeal when Janey was 10, her six day stay as a "boarder" at Children's Hospital (starting with a day in the ER that stands out in my mind as the most hellish day of my life), and then her 18 day useless stay at a psychiatric hospital in Rhode Island.

I am thinking of all this because Janey is having quite a spike in her behaviors the last few weeks.  At home, it's been tough but not critically tough.  She's been screaming a lot, but not all the time, she's been sleeping quite badly, but there have been times she slept even worse.  But at school, she's been screaming all day.  She hasn't been like that since starting high school, and understandably, her wonderful teachers and team there are concerned and upset.  Her teacher called yesterday to talk to me about it, and one of the ideas they've had is that she might need to be hospitalized in a psychiatric hospital to adjust her medication.  In an ideal world, this would be a very reasonable idea.  In our real world---well, let's just says the very idea of it sent me into a wave of post-traumatic stress that was...bad.  

In the seven years since that awful day we went to Children's when Janey was in crisis, things have gotten worse and worse, by all reports, in terms of how "easy" it is to get a child mental health help in a psychiatric hospital.  COVID, especially, has lead to an increase in need and decrease in beds.  I've read so many horror stories of children being "boarded", the term for being held at a general hospital waiting for a psychiatric hospital, for long, long periods---sometimes many months. I will not ever take Janey to an ER for psychiatric help.  It will never happen.  

I would consider a direct admission to a psychiatric hospital for children if it were not the one she went to before.  I know there must be better ones.  We are told there is one in New Hampshire.  We were told about that one back seven years ago---told it was one of only 2 in our area, which is a very big area, that could deal with children with severe psychiatric needs that also had severe developmental delays.  We wound up at the other one.  But from everything I understand, children are basically never admitted directly to such hospitals (or I won't say never, as I've learned over the years that if you know the exactly right people and have the exactly right means, things can happen for you, but we don't know those people or have those means).  

It's been striking me, thinking about this all last night as I didn't sleep (and Janey didn't sleep, and she is home today, because school when she's in this state really isn't doing anyone, mostly her, any good), that the whole deal feels almost like a punishment.  You have a child who needs help with the symptoms of mental illness?  Well, we're going to show you just how we feel about that.  We're going to put you and your child through hell for wanting that help.  We are going to make any help out there extremely hard to get.  We are going to show you that they have the "bad" kind of illness, not the "good" kind of illness that hospitals are really meant to treat.  We're going to teach you to just shut up and bear it all, even if what you are bearing is seeing your child in anguish.  I'm sure no-one is consciously doing this, but it's happening, anyway.  Society is not putting its resources into helping those with severe mental illness.  

And so---what do we do?  This is long enough for now, but next time I'm going to write about my daydreams of a system that would actually help Janey and all the kids like Janey out there.  Until then, we'll go on as we have gone on.  We love our Janey more than words can say, and we will give her our best for the rest of our lives.  That we can do, but the incredible person that is our sweet Jane deserves more.

Ideas for the toughest times

Now is not one of the toughest times with Janey.  It's been an overall good couple of years, which is an amazing statement to make, in that it has "years" in it. But this weekend Janey was a bit unhappy, with more crying and screaming than we've seen lately, and of course, it flashed us back to the toughest times. And it made me think---there's a lot of advice and ideas out there for those with newly diagnosed kids, and for daily life, and for tantrums and so on---but what about advice for the times that quite frankly are hellish?  If you haven't had times like that (yet), I hope most sincerely and strongly you never, ever do.  But most of us parenting a child with autism have, or will, and I have a few thoughts about getting through those times.  

Toss out the regular rules

When times were toughest with Janey, during days when she literally screamed all day, or cried all day, it sometimes took me longer than it should have to realize that it wasn't the time for consistency.  I at first would cling to the notion that if I gave in and did unusual things, like let her watch TV all night, eat chips all day, go for car rides day and night, take showers all day long, that it was going to somehow set a bad precedent.  I now realize---who cares?  When times are as tough as they can be, you are focused on survival.  If something gives you five or ten minutes of a happy or at least not as sad a child, and it's something that won't hurt them or you, do it.  You aren't in regular times.

Trade off

This is the time to beg your spouse to call in sick or take some vacation time.  If you are a single parent, hopefully you have someone that can help in times of emergency.  Either way, you MUST get a break now and then.  It can seem impossible, and you can feel as I have at times that you have to be there.  But even if it's only for 5 minutes, you need to have time to recover.  You need to be able to breath.  I remember the times Janey was in the hospital, when I'd get a chance to go eat in the cafeteria.  Those 15 minutes or so would feel like a miracle, and I'd come back able to go on.  And I remember times for whatever reason I couldn't take a break, and feeling quite literally like I could not go on.  You NEED to grab moments for yourself.

Get some mental support from those who get it

I am very, very lucky to have made some friends through this blog who are fellow autism parents.  I hope the rest of you are as lucky.  When you are in the midst of a crisis time, you need to be able to talk to someone who gets it, without "it" having to be explained. You need to be able to speak freely, to rant and rave and cry, to have someone who won't say "now, it's not that bad", to have someone who doesn't necessarily offer advice but just listens, to have someone who doesn't say something like "You REALLY need to get respite care!" when there IS no respite care...that kind of person.  That is part of why I made the Facebook page.  If you ever need to, post there.  I can guarantee there are others there who get it, and will listen.

Put off going to the emergency room as long as you can

You might not have been thinking emergency room, but I think most of us have had that thought at times, when your child has been screaming or biting themselves or banging their heads or crying for days.  It IS an emergency, and it's reasonable to think ER in an emergency.  And I would never, ever discourage anyone from getting help, but I know, from personal experience, that the ER is not a good place to be in a crisis.  It might be necessary, in order to get the next level of help, but it's a nightmare while you are there.  All my life, until my dying day, I will remember the approximately 24 hours we spent in the ER at Children's Hospital, before getting a room, as the worst 24 hours of my life, and the worst 24 hours I hope beyond hope I will ever have.  The ER is not set up to deal well with children with autism, to say the very least.

Don't be shocked if your child winds up in a psychiatric hospital

I was shocked.  I never, ever saw it coming, even though Janey was certainly in crisis.  When her school called and said they were sending her to the hospital by ambulance, well---I can't really describe that moment well.  And then when she was seen there, and the psychiatrist said she needed to be in a psychiatric hospital---again, blindsided. Sure, things were pretty bad.  Horrible, even.  But for whatever reason, I just didn't realize what that probably meant.  I won't get into right now whether the psych hospital was the right place or not, but I can say it was a safe place for her, and if nothing else, it let us recover for a few days while she was being taken care of.

Take it from me---it WILL get better

If anyone had told me how relatively calm and happy the last few years have been with Janey when we were in the midst of the toughest times, I would have laughed at them.  It did not feel possible.  It truly didn't.  But it was.  And talking to quite a few other people who have lived through such times, I've found that it does get better for almost everyone.  I'm not making promises about WHEN it will get better, or how long it will STAY better, but the very worst times somehow seem to be self-limiting.  If you can make it through those weeks or months, and keep yours sane and alive, there will be a day when you can look back at them and, no, not laugh, but marvel.  Marvel at how you made it through.  

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.

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.