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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.


Sabrina Steyling said...

Suzanne, I will be completely honest with you - no post that you have ever written has brought me to tears the way this one did. My heart aches for all of you, and I wish I could reach out and hug you. I just can't imagine what this is like for you, and as I said to your sister on her Facebook post, I WILL KEEP PRAYING! I will keep praying that you, Tony, the boys AND Janey will find peace, and that a placement will be found for Janey very quickly! In the meantime PLEASE KNOW that I am thinking of you all. Please have Tony give you an extra hug from me!

Bethany said...

My dear friend. My dear, dear friend. How do you hold someone through their deepest, darkest day?! Words seem inadequate and, yet, that is all I have. You have been so strong for so very long and I hope you do not feel alone. I promise, from a farm in Ohio, my thoughts are consumed with you, with Janey. I'm hoping these are the steps that will lead you to peace and true support. ❤

Unknown said...

Sorry your going thru this. Hopefully this is the cry of help you and her need, and things start turning around.

Unknown said...

I wish above all things i could give you a huge hug (& Tony) and provide the reassurance that you are a great Mum and a great set of parents. Autism sucks big time and the stress and strain we live with on a daily basis is not fully understood by many others. I wish there was a magic wand (we would all be queueing) or some small way I could help with the pain, anguish, despair, guilt etc etc that must be raging alongside the worry about your beautiful daughter and her future. Whilst many of us are not there in body, remember that we are here in your small cycber community thinking, praying and hoping for you all. May you get some decent sleep, good food and be well looked after during the next few days / weeks. With all my love and support x x x x Jules

pianorox said...

Prayers for you and Janey and everyone. I know there is an answer and my number one hope is that you find it. Nothing is random and as you have said so often, behavior is communication. Probably not what you want to hear right now but I know it is hard to hear just about anything.

Antti said...

If there only was a spirit or a fairy godmother, who would give me just one wish...

Angel The Alien said...

That must have been scary for you to have to leave the room while the others were trying to help Janey! I hope the situation gets better!

Unknown said...

Because of the title, I thought this was going to be about the movie Aladdin at first!