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.

The power of what we do and don't talk about

Yesterday was our 26th wedding anniversary.  As happens on days like that, Tony and I were reflecting on our past, and especially on my pregnancy with my first child, William. 

Then in the early 90s even more than now, it seemed like pregnancy complications were something not to be talked about.  It was the heyday of "What to Expect When You're Expecting", a book that seemed determined to let you know that everything you were experiencing was just fine, perfectly normal.  There were a few small pages only about what can actually go wrong, and they were presented as something you probably didn't even need to know about, something you certainly shouldn't dwell on.  And so when my pregnancy felt different than what I read about or saw around me, I figured I was just being paranoid. 

I wasn't, and William was born at 7 months by emergency C-section because my pre-eclampsia had progressed to life-threatening levels.  It turned out, in my family anyway, that wasn't that uncommon.  On my father's side in particular, pre-eclampsia turned up often, with the strongest example being my great-grandmother, who died of eclampsia, seizures, a few days after my grandmother was born.  A few months after William's birth, the TV series ER had an episode called "Love's Labor Lost", in which a mother dies from complications of pre-eclampsia.  I wish I'd seen it sooner, although it was the hardest thing to watch I've ever seen.

A scene from ER's "Love's Labor Lost"

Of course, there are reasons we don't talk about everything in our lives publicly.  There is much in all our lives, including mine, that we don't share.  The reasons are many, and sharing or not is a choice we have a right to make, and sometimes an obligation to make.

However, at times, sharing can be life saving, or soul saving.  My life, and William's, were in the balance around the time of his birth.  I wish I had known what I know now about how suddenly and drastically pregnancy can take a turn.  And when it comes to my life with Janey---if I hadn't found the people I have, through this blog, mainly, I don't know if I would be here today.  There were days, and nights, that were only survivable by knowing that others had lived this life and gone on to a place of calm, even happiness.  And what keeps me writing today is those letters I've gotten from others with girls like Janey telling me how knowing they weren't alone kept them going.

Something I try to always keep in mind, though, is that there is much we don't know about the lives of others.  We don't always know what others are struggling with, what health issues or family issues or any other issues are affecting their lives.  There are many things we don't share, or aren't ready to share.  There are many times we are the ones depending on others who ARE ready, who DO share, whose stories we cling to as we struggle with what we ourselves are not yet, or ever, sharing.  Help comes in many forms---both in how we give and how we get help.

I want to thank those who have made me know I'm not alone, over the years---both those who shared their life experiences and those who didn't, but used them to become comforters and helpers of others.  May none of us ever feel truly alone.

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.  

Autism, Communication and Being Sick

Janey is sick.

In her early years, in fact, until the whole appendix ordeal, Janey was rarely sick.  But lately, that seems to have changed.  She missed a few days of school in December due to a bad cold, and now, she has something else, maybe the flu.  She had a little cough last week, not enough to have to stay home, but on Saturday, she seemed worse.  Around 3, she got rapidly sicker. She was shaking  a huge amount and felt extremely warm.  We couldn't find the thermometer that works for her (she won't hold one in her mouth), but she was sick enough we took her to the urgent care clinic.  They ALSO didn't have a forehead thermometer, but it was obvious she was burning up.  Her pulse was 250, and she was very lethargic.  She wouldn't open her mouth, but her ears were fine.  The doctor decided to put her on antibiotics, with the thought she probably had strep.

Our thermometer.  Accurate?  Not sure...

We got home, and I found the forehead thermometer.  And took Janey's temperature.  And was shocked by what I now know must have been a faulty reading.  It was 107.  I am told that if she was really that hot, she'd have been in a coma or something.  I took it again a minute later, and it was 106.  I took mine, and Tony's, and Freddy's, all of which read normal.  I took Janey's a few more times---over and over, 106.  I called the nurse line.  They told me to take off Janey's clothes and give her a tepid shower, and call them back in half an hour.  We had given Janey Tylenol just before I took her temp.  I did as instructed.  In half an hour, Janey's temp was 104.  The nurse told me when I called back to take her to the ER.

I hate emergency rooms.  No matter how good a hospital is, the ER seems like the weak link.  The ER was the place that didn't even touch Janey's belly, that we can remember, when it turned out that her appendix has probably already burst.  But I was scared.  I'd never seen a fever that high.  So Tony drove us to Mass General.

I don't like ERs any better now.  By the time we got there, for whatever reason, Janey's temperature was normal.  She was being herself, screaming and then being cheery and lively.  I tried to tell them about her fever just a bit before, but I honestly think they thought I was making it up.  I felt like screaming "Yeah, I came here just for fun.  No better time than an ER on a Saturday night with an autistic kid.  Good times, good times"  They gave Janey a very minor exam and sent us home.

Yesterday, every time the Tylenol or Motrin ran out, Janey's temp was back up to 104 or so.  She has a dry cough and she slept most all day.  Today I will call for an appointment at her regular doctor's office.  I hope they listen to me.  It's very possible she has something viral, a flu, that will just run its course.  The ER doctor did manage to look in her throat and see it was fine, so it's not strep.  But the point is, I don't know and she can't tell me.

I used to be a lot more laid back about illnesses.  But when you have a child with a burst appendix, in the hospital for almost a month, a child that presents hugely atypically, even with her blood tests---you get scared.  You doubt yourself.  Janey, along with many kids with autism, doesn't react to illness in typical ways.  I do wonder if this is even on a physical level as well as emotionally.  She was almst never sick for so many years, even when other kids in her class got sick.  I think her body overreacted to any virus or bacteria, and kept any symptoms from showing.  Even now, I think when she does get sick, it takes a pretty strong strain of whatever to lay her low.  And she can't accurately tell me what hurts, or if she has odd feelings.  For all I know, she always hurts or has odd feelings.  I certainly hope not, but I don't know.

So, we fumble on.  I hope Janey's better today.  Right now, she is peppy, and after taking Motrim, fever-free.  But who knows?  We will keep on trying to make sure she gets proper health care, and we will try to educate medical professionals on the reality of life with low-functioning autism.  It's all we can do.

A whole new world Part 1

As I write this from an old laptop at Children's Hospital in Boston, on Sunday night, it is hard to believe all that has happened in the last two days.  It will take me a long time to write all I want to, but this will be a start.

Last week was a tough one.  Janey was showing a lot of aggressive and self-injurious behaviors, and we were not sure what was up.  But I think we figured that she'd had bad spells before, and they got better.  We were not planning to do much with this current bad spell but wait it out.  Janey went to school on Friday, and I somehow felt very relaxed, like things were turning around.  That is how good my ESP is.  I got a call from the school around 1. Janey had been screaming, lashing out, hitting herself, biting herself and trying to bite others for several hours.  I said I would come get her, but the nurse said she didn't feel it would be safe for me to take her home.  They said they were calling an ambulance to take her to the emergency room.

I was stunned, overwhelmed, hysterical.  I simply hadn't thought of that potentially happening. I am not sure why.  I drove to the school crying.  I'm not sure how I made it without an accident. When I got there, about 5 teachers and therapists and nurses were gathered to talk to me.  They were all wonderful, but felt very strongly that Janey needed help, immediately.  And so I agreed to have her go in the ambulance.  Her great classroom teacher came with me,and another teacher followed to bring Janey's teacher back to the school afterward.  They truly went above and beyond, but I was still in a state of shock.

Janey enjoyed the ambulance ride immensely. So much so that I started to think we would get to the hospital and they would say "why in the world are you here?"  If only...We got a room in thr ER right away, and were seen by triage, mostly just to take vital signs.  Janey was agitated in the room, but not severely so at first.  A few hours after we arrived, we were seen by a psychiatrist, who observed Janey and heard about what had happened during the week.  She took the numbers of the teacher, the administrator and a social worker at the school,and I heard later she did call them all,which was good.  She told us that based on what she had seen and heard, she felt Janey should be admitted to a psych ward.  I had assumed if this was the case, she would be at the ward at Children's, where we were, but she explained that only a few hospitals were equipped to deal with low functioning, aggressive autistic children.  She knew of two---both probably an hour from Boston.  She said they would check for space at them, but it was highly unlikely they'd have a space right now, and that we would stay overnight in the ER.

After a bit, we were moved to another room.  The new room was MUCH smaller than the other ER room, and was right by a very busy nursing station.  We were told we needed to keep the door to the room open, so Janey could be observed at all times.  There was barely room in in the room for a bed and a chair for me. Janey finally fell asleep from exhaustion, about six pm, and I fell asleep shortly after.  I told Tony he could go home for the night.

Around 11, Janey woke up.  She immediately started trying to take off her clothes, which were wet.  I had no other clothes, and the ER brought me some pants and a top---the pants were about a men's size XL and the top a child's size XS.  Neither of course fit on Janey.  I also had no more pullups.  They brought me an adult diaper, about a size also men's XL, with the tapes gone.  Needless to say, this didn't work out.  Janey was getting more and more upset and taking off her clothes and screaming.  AT that point, I gave in and called Tony and asked him to come back, with clothes and pullups. He did, but Janey didn't go back to sleep.  She remained awake, agitated and wild.  I was beyond tired and beyond overwhelmed.

Janey seemed a little calmer around 8, and I told Tony he could go home and try to get a little more sleep,  Well, that might have been a mistake.  Shortly after he left, all hell broke loose.  I don't think I can even describe how badly hell broke loose.   Janey started lashing out, trying to bite me, pulling my hair and screaming.  When a nurse came in to help, she did her best to hit and bite the nurse.  She was ripping off her clothes repeatedly,and trying to run out in the hall.  She took a carton of chocolate milk and flung it at the wall.  She landed a bite on my hand.  A crowd had gathered, of nurses and security people and even policemen.  I felt like I'd gone into slow motion, like this was part of a movie or dream.  Someone told me to leave the room so I would not get hurt more.

I was taken to a small quiet room and a lovely nurse gave me some coffee and toast.  She said they would work on Janey and I should rest.  I had two minds---one said I should stay with my child who was so upset, and the other knew I couldn't, that I was at the end of some kind of limit that could not be pushed any further  I h/adn't slept, I was in the middle of the toughest day of my life, I was in a state of shock.  So I sat and drank the coffee and ate the toast and called Tony, who was understandably also stunned at the turn things had taken.

After a while, a nurse came in and asked how Janey usually responded to Ativan, an anti-anxiety drug. I said she had never had it before that day.  She said they had been considering giving Janey a dose of Haldol, which I knew was an anti-psychotic, by shot, because she had still not calmed down, but they decided to give her some Risperadol instead, as Janey already takes that, and they didn't want to mix the two.  They gave her an extra dose of the Riperadol.  They told me to rest and they would call me when Janey needed me/

Needless to say, I couldn't rest/  I tried, but I felt I had to see how Janey was doing. After about half an hour, I went back to her room.  She was looking close to sleep,  biting on a bite toy.  I hugged her and held her.  She stayed awake, although she was quite out of it.  I sat there, empty of all emotion, waiting to see what happened next.

I'll try to write part 2 soon.  I'm not trying to build suspense---my eyes are closing.  I need to sleep while Janey sleeps/  So I will close by saying the support all of you have given me since my sister posted on my Facebook page has helped to keep me going in this last few very dark days, and I am extremely, overwhelming grateful.  I haven't been great about answering notes or calling people the last few days, and I will try to be better as the situation allows, but please do know I treasure all of you.