Saturday, November 29, 2014

Once you notice you've walked off the cliff

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

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

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

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

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

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

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

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

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

Thursday, November 27, 2014

Thanksgiving 2014

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

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

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

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

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

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

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

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

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

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

Wednesday, November 26, 2014

Visiting Janey

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

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

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

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

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

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

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

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

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

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

Monday, November 24, 2014

On Not Following the Script

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

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

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

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

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

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

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

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

Sunday, November 23, 2014

The day it all hit me

It's funny how the mind and body work when you are in the middle of a crisis.  There must be some kind of system that kicks in that lets you keep going when normally you would have collapsed on the floor, overwhelmed.  That system was in high gear from last Friday until yesterday.  It's not that I didn't cry some or feel exhausted, but I was functioning.  Last night, the system wore out and I was hit hard.

I was okay yesterday morning.  I did housework and laundry and dishes, enjoying the feeling of doing everyday work again.  We drove to Providence to see Janey midday.  Freddy came too, to see her in the new hospital.  The drive went quickly---we are figuring out new routes to take, and it's a pretty straight shot to drive there, although a long straight shot.  We are starting to know the routine, how to check in, what not to bring into the hospital, where the long locked halls lead, all that.

Janey looked well cared for, which was great to see.  Her hair was clean and brushed, and she was dressed in her nice clothes.  She seemed much quieter, calmer overall.  We visited with her in her room, as we are required to do.  She seemed happy to see us.  We brought her her toy Olivia and Beanie Baby style My Little Pony, and we played with those a bit.  Then I sang her some Christmas carols, letting her choose what I would sing next.  She looked at me with the look I only see when she is totally overcome with music---a look of wonder and amazement, as if she can barely believe the perfection of the songs (not my singing!)  When I sang "O Little Town of Bethlehem", she kept repeating the line "yet in thy dark streets shineth" and I sang that part over and over.

After a while, she was getting restless and started asking for the kind of things she asked for in the hospital, over and over..."Want to take a shower?  Want to watch Olivia?  Want bacon?  Want take off socks?"  We realized it was probably time to go, before she got more upset, and we told her we were going to say goodbye.  She said "Put on shoes?  Go to Mama's house?"  If there is a moment when a parent has their heart broken, that is it---when your ten year old daughter, in a locked psychiatric ward, asks for you to take her home.  I hope I never again feel what I felt that moment, and I hope none of you ever have to feel that feeling.

We took her back out to the ward---the area they seem to spend weekend days in, outside her room.  I won't write much about the other kids there, because it is not my story to tell and I respect their privacy, but I will say Janey was the only girl I saw, and also the only child that seemed to talk.  She stood out, as it feels like she has done all her life.  I wish so much sometimes I could gather all the girls together that I have met through this blog, that we could get our girls together in a room so Janey for once could have peers like herself.  Maybe someday that can happen.  But for now, it so often feels like Janey is very alone.

After we got home, I did mindless things---watching some Star Trek, reading, knitting.  Tony was working on a long, long application we have to do to try to get state supplemental insurance for Janey, to help with the bills that will soon start rolling in.  At one point, he asked me for a little information for the form.  I found I couldn't answer.  I couldn't think.  I couldn't put together simple sentences.

Tony quickly realized what he was dealing with.  He stopped asking any questions.  He made me some hot chocolate, and then, a French bread pizza.  He comforted me as I collapsed into my bed, crying and crying.  I am incredibly lucky to have a husband like him.

Later, my rock of a friend Maryellen called me, and we talked for an hour.  She listened to my teary account of the visit to Janey.  That is so important---to have someone I can pour my heart out to, someone outside the family but still very connected.  I am so lucky in the support I have, from friends like Maryellen, from my family and from my extended blog family.  I truly want you all to know that---how much you all have helped.

Today I feel stronger.  I am sad we will probably not visit Janey today.  The Patriots play in between where we are and where she is, and traffic back and forth becomes a nightmare.  I would not let that keep me away, but I think also Janey might need a day without the confusion our visits seem to bring.  I hope I am right there.  I know she is in the place she needs to be, but I miss her so intensely.  It is not the normal course of things to have your little girl so far away, literally locked away.  My life has taken a turn which is often feeling surreal.  I need to get through this.  I think today, I will retreat to gather strength for the next round, to go on and keep on fighting.

Saturday, November 22, 2014

Our Experience with the Mental Health Boarding Crisis

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

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

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

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

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

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

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

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

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

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

Friday, November 21, 2014

Third post of the day!

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

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


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

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

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

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

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

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

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

The Long Day's Journey---Part Two

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

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

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

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

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

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

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

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

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

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

The long day's journey into hope

As I write this, I am at home.  Janey is in Rhode Island, at Bradley Hospital, a children's psychiatric hospital.  I am going to try to write about the last few days---days that seem like a long, long dream---not always a bad dream---more like the confused, meandering type dream with many elements that seem to not make sense, but a general feeling at the end of hopefulness.

Wednesday morning---Janey woke groggily after a fairly solid night of sleep.  She woke a few times, still obviously under the influence of the anesthesia and the extra medication she had been getting.  She kept falling back asleep after just being up a few minutes.  Her blood pressure was often low when it was checked, and she wasn't very steady on her feet.  Tony came by before work, and I snuck out for my daily cup of Au Bon Pain coffee---a lifesaver.  After he went to work, my amazing friend Maryellen came to help.  It was fantastic having her there on both Monday and Wednesday.  If you ever have the misfortune to be a "boarder" in a hospital, waiting for a psych placement, I hope you have a friend like Maryellen.

That day, Wednesday, is a bit of a haze in my mind, as it was I think in Janey's mind.  I know I was visited by several people.  One was the psychiatrist on Janey's case, who I will not talk about a great deal here.  I will just summerize by saying she saw Janey for about 10 minutes on Monday night, when I was home and Tony was with her, and from those 10 minutes was able to feel that she was "delightful" and "prone to moodiness".  Okay.  Both are very, very true, but not exactly the impression that others had gotten of her, especially those who were bitten or attacked by her.  Enough said.  Regardless of that opinion, she was continuing the search for a inpatient hospital for Janey.  At that point, the most likely candidate was Hempstead Hospital in New Hampshire.  They had her on their waiting list, and were just waiting to see if a patient was discharged on Thursday.

A few other people came by.  One visit was the speech therapist and the child life therapist (I think).  They wanted to make a schedule for Janey, using picture cards.  Janey was out cold when they visited----I tried to rouse her, as she had been sleeping too much, but couldn't.  They said they would come back later in the day.  The most striking visit was from the hospital chaplain.  She said she knew I had been there a while and wanted to know if I wanted to talk.  Yes, indeed, I did.  I am not a very religious person, but there are no atheists in foxholes.  Maryellen stayed with Janey and we went to a private room to talk.  It was wonderful.  She was a rabbi, but our talk was not really about religion---more about helping me think about how to go forward.  I have rarely had a better talk with anyone.

Later in the day, Janey woke a bit more.  The speech therapist came back, with a PECS type board (little cards with velcro on the back and pictures of various activities on the front, to make up a schedule)  She was very well meaning, and such a schedule might be great in another situation, but the fact was that we were confined to one room, and there simply weren't a lot of choices of activity.  Janey has also never been a huge fan of PECS, which her schools have figured out.  It struck me that the time spent making up the fairly elaborate board could have been used one on one with Janey, giving her some help and us a bit of a break.

Wednesday night, Janey again slept fairly well.  I was feeling that she was a bit overmedicated.  She had been getting extra Risperadol several times when she lashed out, to help calm her, and she was starting to seem very hard to really wake up.  I decided if possible, I would avoid further extra doses.

As Janey woke Thursday morning, she was not in a happy mood.  She started what she had been doing often during the stay---moaning out "Mama!  Daddy!" and crying.  She at one point jumped out of bed and ran toward the current "sitter", a very nice woman, and scratched her.  I managed to calm her down, and soon Tony arrived.  He had worked on Wednesday, but we decided he would stay home on Thursday and Friday.  We settled in to wait for news on the hospital transfer, which we were told we'd get around 10:30.

At about 11, the social worker came in to fill us in.  She walked in ready to tell us there was no new news, but as she arrived, she got a text telling her that there was a place for Janey.  The place was not at Hemstead Hospital, as we had been anticipating, but at Bradley Hospital, in Rhode Island.  We were thrilled there was a place anywhere, thrilled in a way you can probably only be after spending 6 days in the hospital with a very agitated autistic 10 year old who can't leave their room.

I am going to write the rest of the story up to this morning in just a little bit---I thought I would divide this part up as this is getting long.  I am going to interspace a few pictures of Janey at the hospital.

I again thank everyone who is following this journey.  Your comments, thoughts, prayers and ideas mean more to me than I can ever, every express.

Tuesday, November 18, 2014

The hospital story continues

I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.

Monday morning, after a fairly sleepless night,  Tony went into work to try to get in a few hours.  Janey was restless, but not lashing out.  We had a lot of calls and visits.  The medical doctor assigned to her came in and talked tome.  She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do  one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me.  After that, both her regular psychiatrist and her pediatrician called.  Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it.  I was kind of surprised they both saw that about me.

My dear friends Maryellen and Fab both visited that day.  Maryellen stayed almost all day, which was a huge help.  Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey!  Later in the day, Janey's classroom teacher also came to visit.  She brought Janey a big bag of books and other things from the classroom that Janey especially likes.  We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug.  It is so good to see how much she loves her teachers and they love her.

When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey.  We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find.  She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then.  One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now.  We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)

Then----I went home.  I got a ride home with Maryellen, and got home about 4.  It felt hugely weird to be home.  It felt like I had been gone years, not just days.  I was bone tired, but not quite ready to sleep.  I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza.  I did some computer time.  By 8, I was so tired I wasn't even able to really function.  Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully.  But I felt wired, like I couldn't sleep.  I wound up taking some melatonin, some we had gotten for Janey which never worked for her.  It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.

Tony had a fairly good night with Janey.  She slept from 7 until 3 am, which is not even that early a wake time for her.  He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.

I got back to the room about 6:45.  The plan had been for Janey to have an MRI at 7, but we had heard nothing.  When we finally did, it was that the MRI had been delayed until noon.  That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am.  She spent the morning begging for food and drink.  It was a long morning, but she remained pretty calm.  The contrast to the events of the weekend was incredible.  As it so often does with Janey, her mood had simply changed.

Janey finally had the MRI about 2.  It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave.  They gave her oral sedation, which took extra long to take effect, and then an IV.  We went back to the room while she was under.  It felt very odd being in the room without Janey.  Finally, they brought her back around 6, but she still hasn't woken, as of 8:45.  They aren't concerned, as she is on a monitor and she had so much sedation.  I am only concerned how she will react when she wakes up.

So---I am caught up to the present!  Although the present is still filled with much uncertainly.  When talking to the social worker tonight, we found there is still no progress on the placement.  There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital.  As much as I want her home,  I don't like that idea.  We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help.  I don't want this whole ordeal to result in nothing.  I am glad Janey is calmer, but that is what Janey does---she cycles.  Although we all always hope her cycles stay good forever, all who know her know that is most unlikely.  And I don't ever, ever, ever want to come back here as we did on Friday.  So---we will see what the next few days hold.

Monday, November 17, 2014

A Whole New World Part Two

I am home for the night from the hospital---Tony is staying with Janey tonight, although I am of course on call if he needs me.  I plan to go back in about 6 am tomorrow.  Everyone has been telling me I should just sleep once I get home, and maybe that is good advice, but blogging here yesterday felt the first thing I've done in days that made sense.  So I am going to continue my story.  I don't think I'll catch up to the present this post, but we'll see.

After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened.  One is that I found there was a woman in the room, someone called a "sitter".  The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter.  But I have found out since it's standard protocol for psychiatric patients in non-psych wards.  They are women (so far all women) that sit in the room and keep an eye on how things are going.  Some do more, some don't.  They are there ALL THE TIME.  If they have to go to the bathroom, they have to get someone else to come in.  More on how that all feels later.  At this point, I was too dazed to think much.

A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room.  The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door.  This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor.  Again, we were supposed to keep the door open at all times.

Janey was very unhappy.  She started to again lash out.  This time, the psychiatrist covering the ER didn't want to give her more medication.  He said instead we should just walk around with her to try to calm her.  A good idea in theory, but in practice, it didn't work well.  Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle.  She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.

At this point, I decided I'd had enough.  I called the nurse and said I felt being at the hospital was only making things much worse.  I said I wanted to be discharged---that I needed to take Janey home.  I kind of knew that wasn't going to happen, but I had to say my piece.  I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling).  The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay.  She said she did have good news---we were going to be admitted and moved to a private room on a medical ward.  We would be a term that is new to me, "boarders"  I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available.  I was learning new vocabulary fast that day.

The move came about an hour after that.  The room was a huge step up from being in the ER.  It was up on the top floor of the hospital, in what is actually a transplant ward.  That is where they had room.  It had a bathroom, a window ledge bed for parents and more room for Janey to move about.  That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room.  She had to stay in the room at all times---it wasn't considered safe for her to leave.

Janey freaked out again badly a little bit after getting to the room.  She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence.  A lot of nurses came in and had to restrain her.  They gave her an extra dose of Risperadol again.  After about 10 minutes, she calmed a bit.  She eventually went to sleep around 9 that night.  I told Tony he could go home, and I passed out cold asleep too.

Janey woke up at 3 am, freaking out once again.  Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication.  When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us.  She was up from 3 on.

The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before.  That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life.  But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable.  I say barely, because she was absolutely constantly restless.  She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long.  And endlessly, she would ask to take a walk.  And I would have to say no---we couldn't take a walk.  Which killed me.  It felt, quite frankly, like being in prison.  You have an agitated, frantic child who very much likes to stay active, and you can't leave the room?  For days?

Janey went to sleep about 7 that night.  I couldn't get to sleep right away.  I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.

Janey woke at midnight, with another outburst.  The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point.  She said "You have to keep yourself safe.  You have to step away when Janey is trying to hurt you.  You can be a better mother to her if you don't sacrifice yourself"  In my sleep-deprived state, my mind suddenly really understood that for the first time.  I have to keep myself going.  That is the only way I will be able to keep going for Janey.  She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more.  I have been reflecting on that thought a lot.

I want to write more, but I will listen to the last paragraph and get some sleep.  As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight.  We will have to remain at Children's Hospital until we get one.  I hear often two weeks as a common time frame.  I very much hope for something sooner.  Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her.  But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away.  This new world is not going back to being the old world any time soon.

Sunday, November 16, 2014

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.

Friday, November 14, 2014

The Terrible Day and the "What Next?" Feeling

Yesterday was a terrible day with Janey, terrible from start to finish.

Janey slept very badly night before last.  She was up at around 2 for good.  By bus time in the morning, we were exhausted.  The bus aide told Tony before Janey got on the bus that she has been crying a lot the day before.  Tony said he hoped today would be better.  We all hoped that.

I slept much of the day.  At around 1 pm, I got a phone call from the school, from one of the program heads and Janey's teacher.  They said Janey's behavior was at a level they had never seen before---frantic crying and screaming.  They took her to the nurse, but as is almost always the case with Janey, she was physically healthy.  They wondered if anything had been different at home.  It hadn't, except that we too had certainly noticed Janey had entered one of her darker periods, after a long stretch of happy behavior.  I felt like I had little to offer them in the way of ideas.

Getting Janey off the bus, I heard the driver say to her "Maybe NOW you'll stop crying!"  I asked the drive and aide if she had been crying a lot, but they didn't answer---I don't know if they didn't hear me or were just too burnt out to answer.  Janey came in and was happy for about 20 minutes.  Then all hell broke loose.

Janey asked me for a video.  I put it on.  She evidently didn't like it.  She lunged at me.  She grabbed my hands and started bending back the fingers as hard as she could---a behavior that has showed up in the last few days for whatever reason.  I pulled away my hand, and she grabbed my hair and pulled it as hard as she could.  I pulled away and she lunged again, and tried to bite me.  All the while, she was screaming a scream so loud and intense her back was arching.  I could feel that her heart was pounding very fast, and she was breathing extremely hard.

I got away from her, feeling for the first time true fear that she was going to badly hurt me.  I called Tony, and as we talked, she again lunged at me.  I was in tears.  Tony said he would get home as quickly as he could.

I gave Janey a dose of her evening medicine early, as her psychiatrist has said we could do in an emergency.  As always, she took it willingly.  She knows it calms her down, and I think she wanted to calm down.  After about 20 minutes of screaming, she was calm enough to eat, and Tony got home a bit after that.

The evening featured off and on incidents, but the worst was over for the time being.  Tony and I were drained.  Janey was not.  She stayed up until 10.  Thankfully, she slept until 4---the 6 hour stretch was the best we've had in a while.

The morning from 4 on was tough but somewhat bearable, with the two of us here.  When Tony put Janey on the bus, both the driver and aide talked to him.  Unfortunately, there is a big language barrier, and with the loud bus engine, Tony was unsure what they were saying, but it involved yesterday being another bad day on the morning bus for her.  However, they let her on, and we exhaled and went to try to start today.

The feeling I keep feeling is "What now?"   I feel like we have crossed some point---we are ready for more help.  But there isn't more help.  We did the steps we could.  I wrote to her school asking for a meeting next week, to talk about how we are all going to handle Janey, and we will have that meeting.  Tony is going to call Janey's psychiatrist today to see how soon we can see him.  But except for those two steps, we have no idea what else to do.  There is no number to call, no magical number you can call and say "Okay.  I'm ready.  I'm in need of help.  Help me."

There is support.  There is a lot of support, and without that, I would be sunk.  I thank each and every one of you who reads this blog, and your support and kindness and compassion keep me going.  I am grateful so very much to Janey's school---I know she is cared for and loved there, and I know they want the best for her.  I am thankful for my family and friends.

But help, help in caring for Janey, help that will give us some respite, help that will make a long-term change in Janey's life, help that I could have called yesterday when I felt physically scared, the kind of help that would be available so easily if what Janey had was a physical ailment---that does not exist.

I thought a lot yesterday about when Freddy had a terrible asthma attack.  We knew what to do.  We took him to the emergency room.  Within seconds, he was being helped, by a large team of professionals.  He got top of the line care, which very well might have saved his life.  He was admitted to the hospital.  He got wonderful followup care.

Yesterday, in the horribly dark moments when Janey was attacking me, I had no idea what to do.  If I had taken her to the emergency room, from everything I've ever heard and read, they would have had no idea what to do either.  There is no team of professionals rushing in to help with mental health issues.

This is a long entry, a raw one.  Maybe an angry one.  I am starting to feel anger in a way I usually don't.  What happens when you are ready for help?   Is there any help?

Janey will get over this very rough patch.  But it will come back again.  It will keep coming back.  And I guess we will keep doing what we are doing, getting by any way we can.  What else can we do?  I think the answer is----nothing else.

Wednesday, November 12, 2014

My First Guest Post! Guest Author---Freddy Amara, Janey's brother

Hello Rarer In Girls readers,
My name is Freddy, Suzanne's middle child.  I am 17 years old and currently a senior in high school.  My mother had requested that I write a guest blog entry about how Janey has affected my childhood.  I responded that I would be happy to; this blog has had a profound impact on my mother's life, as there is a wonderful community of more than just readers.  You all have let my mother---and my family---know that we are not alone.  Your support is incredible, and I personally thank you for reading my mother's entries and giving her support.


This is how Janey has changed my life.


It hasn't been easy with a little sister with autism.  I wish she wasn't autistic, obviously, as I feel I
cannot have conversations with her that I could have had with her had she been normal. However, I love her the way she is. I have a special connection with her that nobody else has, much the same as a normal brother and sister would have.   My personality has certainly been altered because of Janey.  I feel like I am more tolerant and patient than many other people my age.


One of the hardest parts of being a sibling of somebody mentally disabled is the misunderstanding among everyone else.   The usage of the word "retarded" has died down over the past few years, however, each time somebody uses it in an offensive context, I feel a sharp pain.  They don't know what it's like. The nights of screaming, the stares in public, the fear for the future.  I try to explain to people when they use the word how deeply it can hurt.


My parents have been great in my opinion. Ever since her diagnosis, they have made it clear that for my childhood, Janey is our shared responsibility; more theirs than mine and my brother's, however, there will come a time that when my parents will not be able to care for her anymore, and she will be our responsibility.  I accept this, as does my brother.  I do help out with Janey often, but my parents have let me have an otherwise completely normal childhood, and they care for me just as much as they would have had Janey not been autistic.  In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her.   This is good for me, I have learned independence at a younger age than others, and my parents have learned to trust me with my schoolwork and don't bother me about when I do my studies.


It should be said that I'm writing this on my own, my mother doesn't even know I already wrote this.  She'll proofread it before posting, I'm sure.


Autism is a scary thing.  I want to have children when I am older and have a family, however, it is widely unknown what causes autism, and it is possible that genetics play a role.  I have questioned whether I want to have children despite the risk of autism.  I know I'm quite young and I shouldn't worry about it yet at this age, but I can't help it.  I'm glad my parents had me, and to all of those parents out there who had an autistic child as your first, it must be a tough decision whether you should have more children.  It's not my place to say, I'm just happy that I exist, and I think I'll take the risk someday of being a father.


It is nice all the support people give towards finding the cause of autism, however, as my mother has likely spoken about before on this blog is that the public doesn't seem to care as much about helping families that have already had children with autism.  Many things could cause autism, or any other mental illness for that matter, and so I agree with my mother that it would be nice if there was more support or awareness for those who have a loved one already diagnosed.  I feel like I should follow in my mother's footsteps in raising awareness somehow.  How, I don't know.  I believe just letting people know how common autism is is the first step.  Not only that, but the effect it has on our lives.  You all reading this already do know and care, and so I thank you.  My only request is that you tell somebody about autism who might not know its effects on families, and maybe even share this blog with them.

Out of the Blue

We've been on a pretty good run with Janey lately.  She's settled into the school year routine, and has been fairly cheerful for a good long stretch.  It's been nice.  The time change did result in a sleep issue, where Janey wanted to go to bed about 4 in the afternoon and then wake around 1 am for the rest of the night, but that gradually seems to have gotten better.  It's times like this when out of the blue incidents truly can shake us up.

Yesterday here in the US was Veteran's Day, one of the few holidays that don't attach themselves to the weekend, but occur on the same date each year.  So we had the weekend, and then a day of school and work, and then a day off.  That is never a good scene with Janey, but she did fairly well yesterday.  Daddy was home,which is always a plus.  She was very eager to get out of the house, and we went to a few of her favorite places---Whole Foods for some "ham", which is actually a hugely expensive kind of salami she can always find there, and ToysRUs just to walk around and look at toys and find the few toys she already owns and play with them, to the exclusion of the millions of others toys.  So a typical day.  She slept fairly well, and we were looking forward to this morning, getting back in the routine.

All I can think of is that Janey felt today should be a weekend day.  After all, yesterday felt like a Saturday, albeit a strange Saturday after a one day week, so today should be a Sunday.  When it became evident I was trying to dress her for school, she went ballistic.  Every piece of clothing I tried to put on, she violently took off.  She arched her back and screamed at the top of her lungs "DADDY!  DADDY!"  So Daddy came in and tried to dress her, with similar results.  She is strong, and if she doesn't want to be dressed, she doesn't get dressed.  For 10 minutes, we struggled to get her into her clothes.  The screaming was deafening, she flailed out over and over, she was in a fury.  She tried to hit us, she lunged at us, she hit her own head over and over.  Finally, I think she just wore herself out, and we managed to get the clothes on.  Just in time, as I only was able to quickly brush her hair and teeth before the bus arrived a bit early.  I hope very much she stays calm for the day, but who knows?

I took a deep breath after she was on the bus and thought about the whole incident.  I tried to tell myself she's been quite good for weeks now, and that I should not be so bothered by the tantrum.  But I was.  I think it's the out of the blue nature of these fits that makes them so tough.  She goes from calm to absolutely 100% fury and fight in a matter of seconds.  The mind and body have trouble adjusting to that.  And I can imagine how it feels for her to feel that out of control.  The intensity of these episodes are such that I think in most childhoods, they would be something that would happen only once or twice, and be remembered always.  But with Janey, and with many kids like her, they happen often---not on a regular schedule you can prepare for, but suddenly.  It's like if a day was perfectly sunny, and suddenly a tornado touched down and ripped your house apart, and then lifted and was gone, leaving you stunned.

It's sudden explosions like today that make it  hard to ever totally relax as a parent of a child like Janey.  A day can be perfect, but there is always the knowledge it all can very suddenly blow up.  It causes a stress that never completely goes away.  It is a drain on optimism.  It must make life for Janey, even more than for us, feel like a walk in a minefield.

Thursday, November 6, 2014

Autism Mothers Aren't Chosen

If you are the mother of a child with autism, the news lately is a little tough to hear.  I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so.  And that is my point here.  Mothers of children with autism are not a homogeneous group.  We are not a single type.  We are not chosen.  We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism.  But aside from that, we are all very different people.  We react differently to many things in our life, including the stresses of raising our children.

When I read about the mothers that break, I feel like I am supposed to have some inside insight into them.  I don't, really.  It is like when I read about any crime or horrible event.  I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.

Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed.  We eventually found her guilty of manslaughter.  I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother.  She was not a demon.  She made extremely poor decisions, and she paid for them.  But the experience left me realizing that we usually have no idea what life others live.

The only autism mother I can truly speak for is myself.  And I can only speak for myself at the moment in time I'm in.  I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape.  I thought of getting in the car and driving away and never coming back.  I thought of escaping into death, my own death.  Those thoughts were fairly rare, but they happened.  What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself.  That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.

Autism mothers aren't chosen.  They are parents.  The idea that somehow they are special, different, miracle workers---those are dangerous ideas.  They are dangerous because of the expectations they create.  IT IS NOT OUR JOB TO FIX OUR CHILDREN.  That thought is what I think causes more despair among parents of children like Janey than any other.  We all have read about amazingly devoted parents who "cure" their kids.  Maybe this has happened, once or twice in history.  But most of the time, the children that get "cured" would have done so anyway.  I truly believe this, with all my heart.  I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables.  I didn't cure him.  I am not going to cure Janey.  It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.

When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us.  When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided.  It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different.  Please remember that when you hear the news.