A Year Later

I didn't sleep well last night.  I kept waking up and having flashback type memories.  I've always heard the anniversaries of events can bring them back vividly, and I guess it's true.  It was a year ago tomorrow that Janey was taken to the emergency room from her school by ambulance, the Friday of Veteran's Day week---like today.  She was in a state of agitation such that she was biting, lashing out, screaming non-stop, taking off her clothes, flinging things around---it was a nightmare.  She stayed 6 days at Children's Hospital as a boarder, waiting for a place at a psychiatric hospital, and then 19 days at Bradley Hospital in Rhode Island (as most of you already know).

Of all the memories of that horrible time, the most vivid one, the one that kept coming back last night, took place the morning after the first night in the ER.  Janey had slept very little.  She had no clean clothes---Tony had gone home to get some and hopefully get a little bit of sleep.  I asked if there were any scrubs or anything she could wear---thinking a children's ER sure might have something.  They gave me, to go with the hospital top, a pair of pants that were about a child's size 2 and a Depends style pullup that would have fit a men's XXL.  Janey wouldn't keep them on.  We were in a tiny room, split in half by a pull-down metal wall that covered all the "medical" parts of the room, so we had only a cot on a bare, dirty floor---absolutely no room to move.  We were required to leave the door open, so an eye could be kept on Janey.  We were right by a busy desk.  Janey wanted out.  She kept taking off the ill-fitting clothes and trying to run down the hall.  As I tried to stop her, she bit me on the hand, very hard.  Then she grabbed some chocolate milk and flung it around the room, and tried to break the tray it was on.

The room was suddenly filled with people---probably 10 people, including two cops.  A nurse pulled me into the hall and told me I had to go elsewhere, that I was the focus of Janey's anger and I needed to not get hurt more.  I was taken to a small meeting-type room.  Another nurse brought me some ice for my hand, and some tea and toast.  I sat there, stunned.  It felt impossible that this all was actually happening.  A few minutes later, a third nurse came in and asked me "How does Jane usually react to Haldol?"  Haldol?  Wasn't that what they give violent criminals on TV shows to sedate them?  Why would Janey have ever had Haldol?  I said blankly she had never had Haldol.  The nurse looked skeptical and left.  And I sat there, feeling that my life had changed into something I didn't recognize.

That sequence, that scene, is what kept me awake.  It still seems unbelievable, like something that could not possibly have happened.  But it did.

I could write for hours about the past year, a year in which we spent far too much time in hospitals.  I have a lot brewing in my head about the difference between treatment in different hospitals, and treatment when you are there for a psychiatric reason and for a medical reason.  But I will save that, and say only two more things.

One is that a year later, Janey is doing well.  We are in probably the longest stretch even without any tough times that have lasted more than a day.  I think the changes are due to both a change in medications and a change in our parenting.  Whatever it is, it's good.  However, we know all too well now that things can change suddenly, and we don't take the good for granted, not for a second.

The other is that while I had my dark night last night, what kept the memories from overwhelming me was remembering the support I got from friends at that horrible time---friends in person and friends from around the world I know from this blog.  You all were incredible.  Your love and support and generosity---I cannot possibly say how much they meant to me.

Here's a picture of my big girl, wearing a jacket I bought for her brother that he didn't like but she loves for some reason.  My love for this amazing girl keeps me going---with a little help from my friends.

Autism and Appendicitis Pain - A Scary Combination

Almost everyone with a child with autism has noted that they express pain differently than other kids.  This might seem like an odd little quirk, but the events of the last month have shown me it's far from that.  Janey's reaction to the pain of appendicitis almost certainly contributed to her appendix rupturing, and her post-surgical pain reactions quite likely make the complications she experienced harder to treat.  If I can get one message across ever through this blog, this might be the one...DON'T ASSUME KIDS WITH AUTISM WILL SHOW PAIN IN A TYPICAL WAY!

I keep going back in my mind to the night we thought Janey was having a seizure and we called an ambulance.  Of course we don't know for sure, but Tony and I both now think that Janey's appendix burst that night.  She had a high fever, and we were taking turns checking on her all night.  When Tony checked on her in the wee hours of the morning, her arm was jerking over and over.  She was burning up with fever.  The EMTs quickly told us it wasn't a seizure when they arrived, and the ER staff felt the same way.  But it was something.  I think now it was a reaction to the terrible pain she must have felt as her appendix burst.

Neither Tony or I can remember for sure if the ER staff checked Janey's belly (I have learned "belly" is the technical terms for what we untechnically call "tummy") for pain.  Janey was not presenting like someone with appendicitis, and she wasn't being co-operative.  It took 6 people to get a throat culture on her.  The ER doctor assumed she had some kind of virus, and sent us home.  Her blood wasn't tested, but even if it had been, that might not have shed any light on things, as when it was tested the next night, her white count was normal.  The key here again was how she was showing pain.  If she had been screaming, or if she had been able to say "My tummy hurts!", I think some red flags would have gone up.

Even once Janey was admitted to the hospital, after we took her back the next night, she wasn't showing the pain you'd typically see in a child with an appendix that had already burst.  Tony and I could see she was far from herself.  The big thing we saw was that she wasn't moving.  She lay in the bed in a very, very fixed position.  I think moving was extremely painful for her, so she just didn't move.  I remember a group of doctors coming in and one of them shaking her bed a bit, and when she didn't react, saying something like "Well, she doesn't have peritonitis" (an inflammation of the wall of the abdomen) because she didn't react to the shaking.  She didn't react, I think, because she was determined not to move at all.  She had on her face what I call the stoic look.  It's a look I see a lot on her, a look where she seems to just be retreating into herself and doing everything not to let the outside world affect her.  It's not a look that betrays pain.

This is an example of how typical kids are asked to measure their pain.

Thankfully, so thankfully, the CAT scan done eventually on Janey showed her burst appendix clearly.  But her atypical reactions to pain were still an issue after the surgery.  At first, she was just given morphine around the clock, but the days went by, sometimes nurses would ask me "Do you think she's in pain?"  I knew we didn't want to give her too much morphine, that too much could slow her recovery.  But so often, I just didn't know, even myself, if she were in pain.  It was so hard to tell if she was crying because she hated the IVs, or was upset to be in the hospital in general, or if a video had scared her...it was so tricky.  We could ask her "Do you have a hurty feeling?" and she would echo it back "Do you have a hurty feeling?"  If we asked her to point to the hurty feeling, I think she often took that as a cue she was supposed to point to SOMETHING, and sometimes it was her belly but other times the pointing just seemed random.  Thinking back, I wish I'd worried less about how much morphine was getting and erred more on the side of assuming she was in pain.  But I wish even more she could express the pain in a way that was easier to understand.

I am glad Janey and all of us have only one appendix.  I will not be faced with this particular situation again.  But speaking to all the families of an autistic child still possessing an appendix, my advice would be this----If there's a chance it's appendicitis, push for imaging to be done.  Ultrasounds didn't show the problem for Janey; she needed a CAT scan for that, but that might just be her.  Make sure the medical professionals know that how much pain your child seems to be in should NOT be used to rule out appendicitis!  This would also apply, I am sure, to any other potentially serious cause of pain.  I hope none of you ever have to use this knowledge.  Best of health to all of you.

Probably not a seizure

This is one of those posts I'm writing more just to for myself than anything, to record while it's still fresh in my mind how things went down.  I'll start by saying that Janey should be fine, that we don't think know she actually had a seizure, but that we had a scary night and she is still pretty sick (she's fast asleep next to me as I write)

The night before last, Janey slept almost not at all.  She finally went to sleep about 2:30 and woke at 4:30.  She seemed fine when she woke up, as she often is after not sleeping, and I decided to send her to school, as she has often done well at school after not sleeping.   And I need a nap.  So off she went to school.

Her great teacher emailed me several times during the day, telling me that Janey was very sleepy (I had written her to let her know how little Janey had slept).  They woke her for lunch, but she was angry about that, and woke her again for the bus, and I guess she got furious then.

When she got home, I realized quickly she had a fever.  She very, very rarely gets sick, and when she does, it's usually a mild cold.  But this was quite a fever.  Her temp. was going up and down but around 103-104.  I gave her Tylenol, and then decided to call the doctor on call at the Lurie Center.  This was because the medication she had started taking (and which we are now taking her back off, Abilify) has a rare side effect of high fever and stiff muscles that can be very serious.  I talked to a nice doctor who said it didn't sound like that is what she had, and to see how she was in the morning.

Janey slept very, very sounding all evening.  So soundly I got nervous, and tried to wake her by loud noises and then putting some water on her leg, and finally did wake her enough to have her have a drink and to see she was still lucid.  But she was certainly sleepy.

At 2 in the morning, Tony woke me up.  He had checked on Janey and she was shaking.  The shaking was like nothing I've seen before.  It was rhythmic, and just in her right arm.  As I watched for a few seconds, it seemed to spread to her leg now and then.  I decided to call 911.  I wasn't completely panicked, as I know fevers can cause seizures and that autistic kids are at a higher risk for seizures, but I was scared.

The ambulance arrived quickly, and the EMT saw the end of her shaking.  It had gotten to be less by then, and they said it didn't look like a seizure, just shakes from a fever.  Janey and I got in the ambulance and I asked them to take us to Mass General Hospital, as that is the hospital associated with the Lurie Center.

In the ambulance, Janey was very, very hot.  To cool her down, they put an ice pack behind her head.  Her oxygen levels weren't great, and they tried to give her oxygen, but she pushed it away violently, which was actually kind of good to see.

Mass General has a little section of their ER just for kids.  It wasn't busy, and we were seen quickly.  The resident who saw us did a basic check on Janey, but Janey wasn't having any part of having her throat looked at, so she decided to wait to talk to the attending doctor to see what to do next.  When that doctor came, he attempted to look at her throat also, and she went crazy.  They called everyone in, and finally, after a few attempts with six adults holding her down, they were able to do a throat culture, which came back negative for strep.  They made the decision not to check her urine, as since she is not toilet trained, that would involve a catheter.

We were of course most concerned about what we thought was a seizure.  The doctors said that usually after a seizure, a person is extremely out of it, and that was not the case with Janey.  She talked to the EMTs---actually talked to them amazingly well.  I was grabbing my pocketbook as they took her out, and the EMT told me Janey asked her "Is my mama coming with us?"  I can hardly believe she said that, as that is an amazingly direct and clear question for Janey, but the EMT had no reason to not tell the truth.  So the doctors said that probably we had seen the shakes from the high fever.  They told us if Janey ever appears to have a seizure again, to film it.  I must admit I wouldn't have thought of that, and kind of laughed to myself as I had written recently about not taking Janey's picture during bad times.  I'd see a possible seizure as about the worst time ever for picture taking, but obviously it would be for a medical reason!

So we were discharged, with the theory that Janey has some kind of virus.  She is still extremely, extremely sleepy, but the fever is gone.

I have to admit I still feel, at the back of my mind, that her shakes were not just regular shakes.  They were different.  But I was very clear with the doctors about what I saw and that I felt they were not fever shakes, and the doctors listened respectfully and were very confident she had not had a seizure.  I am not a doctor, and I respect their opinion.  But I am a mother, and I do still feel I have some questions.  However, even if she did have a seizure, having a seizure from a high fever is not unheard of, and I don't want her subjected to any major workup unless it happens again.

So...here we are.  I'm waiting for Janey to wake up and be more lively.  I hope she does soon.  I'm tired out of my mind, but overall, pleased with the care she got.  You could tell the doctors and staff at Mass General had training in autism.  It made a noticeable difference as compared to our last ER visit.

Thanks to all of you who made it this far for listening, and as always, for your support!

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.

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.

The Long Day's Journey---Part Two

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

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

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

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

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

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

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

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

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

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

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.