Thursday, December 4, 2014

A little Janey update

Janey has been at Bradley Hospital for two weeks tonight.  It is still hard to believe she is there, but I think we are coming to accept it and, if not exactly embrace it, to feel grateful she is being cared for at such a caring and loving place.  I'd encourage anyone with time and interest to look at this link----at the right side of that page, under the picture, there is another link that says "Read Legacy of Hope"  It's a PDF file I can't figure out how to link to, but it's a booklet that has pieces about some children Bradley has helped, along with a portrait and history of the hospital.  Janey is in the Center for Autism and Development Disabilities.  The book talks about how this section of the hospital was formed because there was almost no-place that could treat children like Janey, who were autistic and developmentally delayed, and who also had a mental illness.  It wasn't even thought in the past that could be possible, but it is, indeed.  They treat about 100 children a year in her ward, from all over the country.  I am starting to realize how lucky we are that they are relatively close and that they had room for her.

I talked a lot to Janey's social worker recently about how she is doing.  In some ways, she is doing much better.  She is lashing out at others far less, and that is great.  However, she is still doing a lot of the arm biting of herself.  That behavior has been tough for the past few years.  She said their counts show she does it about 40 times a day, which seems accurate.  She usually doesn't bite herself hard, but hard enough so she has a permanent callus on her arm.  She is also doing a lot of the screaming she does at home.  One thing I found very, very interesting and also sort of comforting is that although sometimes they can figure out what prompts the screaming, other times it seems completely inexplicable.  That is just what we had seen at home---that sometimes, there is no possible trigger we can see.

They don't yet have a timetable for her to come home.  That is hard, but I do very much appreciate that they don't want her to come home until she is ready.  I think I'd heard so many stories about people being rushed out of psych wards that somehow I had the time frame "two weeks" strongly in my head as some kind of maximum, but that doesn't seem to be the case here.

We have settled into visiting Janey every other day.  That seems to work best to balance our major desire to see her with how the visit are for her.  She always seems very happy to see us, but she is ready for us to go after about a half hour or 45 minutes.  This is partly that she doesn't want to stay in her room, where the visits take place, but I think also partly that she is eager to join into the activities going on outside the room.  The program keeps her extremely busy---there is something planned for every minute, and I have come to realize how much she needs that.

We are starting to think about how we will do a few things differently when she comes home.  I am going to work on having a schedule for Janey, and on having vigorous exercise as part of every day.  She has been sleeping through the night at the hospital, and although we aren't going to be able to completely recreate her bedroom there, which is almost all empty and not on a busy street in a small apartment, we are going to work on her sleep.  I like very much how the social worker and others at the hospital are careful to say that they know home is different than the unit---that home isn't and shouldn't be the same as the hospital, but at the same time we are able to get good ideas from them.

I worked through in my mind what my two biggest fears about this whole situation were.  One is that Janey would somehow never come home---that this was the start of her not living at home.  Talking to her social worker helped me see that is not what they are going to recommend.  Nobody had said that was the plan, but it was a fear I had anyway.  The other fear was (and is, to some extent) that this all would happen again and again and again.  I felt somehow the worse possible thing would be Janey coming home, getting upset again in a month or two and then having to go through the whole thing again.  In talking to a few people, I was comforted on this in an odd way---by learning that a lot of kids do have to go back to hospitals several times.  Not all do---sometimes it's a one time thing, but some kids going through adolescence do have a few years where they need a lot of extra help.  Somehow knowing that although it can happen, it's not unheard and not the end of the world, helped, although I'm not sure why.  Maybe it's just always better to know what might happen than to just worry about it.

I miss my Janey every minute.  I know she is where she needs to be right now, and I am trying to use this time to rest and to have a little break from 10 years of constant vigilance to ensure her safety, but I still miss her a huge amount.  She is part of us---she is a huge part of who we are as a family.  And I am gradually learning that getting help to keep her safe and happy is not going to change that.

4 comments:

Unknown said...

Hang in there. Sounds like Janey is doing good and hopefully will be better after it all. When Age was put away twice. There was no autism units. She was housed with individuals ranging from severe autism and schiztofrenia to eating disorders and mood disorders. And everything in between. It was very strange. She was out away when she was 10 and 15. Same reasons. Aggression and self injurious behaviors. Best of luck and as always keep us updated.

Angela Conrad said...

I am sending you a big hug right now!!! I believe in special bonds with autism moms and families....and only another autism mom can truly understand what you and your whole family is going through. However, I have not went through what you are going through right now but I fear I might one day. Hang in there! I know Janey is getting better:)

David Fee said...

It's weird how your posts are close to what I'm thinking in some ways. I looked up the history of Bradley Hospital right before reading your post. I'm getting close to finishing watching Star Trek Next Generation on Netflix which is an odd coincidence considering it went off the air in 1993. Your post cleared up some of my other questions. I had the fear the hospitalization was a one-way street away from home glad to hear that's not the case. I do think high energy kids need some kind of things to keep them busy. My daughter surprises me by picking up some odd knowledge and yet can't do things we've tried to teach her time and again. Lastly, they drew her blood for the Fragile X test and she screamed loud enough to bring medical personnel from different parts of the medical lab. The nurse couldn't find a vein and keep moving the needle in her arm which makes me nervous as an adult. My daughter yelled "We made it!" other scripted phrases which impressed me that she could still communicate despite the screaming and crying.

Archivegeek said...

You and you family are doing a great job with Janey. Hugs and greetings to you all.