It's been a long time since I've visited the forum at all, too long. Time for an update on my daughter.
Summer was tough. The ward was closed for six days for moving into newly renovated rooms. So I had to find somewhere for us to be as Ida didn't want to have to stay in our home for that long.
A good two weeks looked like this: Home for the weekend (always hard for her), daddy and brother leaving for vacation on Saturday morning (more sadness). Monday morning we went back to the ward to stay only for one night before they closed. Back home for one night (having promised we wouldn't be there until after dinner at McD), off to Malmö for four nights in a hotel (just across the waters from us and still a foreign country), back home for one night and then back to the renovated ward.
What can I say? By Sunday I was calling the ward to hear if we could come in a day early because Ida was close to breaking. It was too much for her with all the changes and new impressions. At the same time I don't know what else I could have done as she didn't want to stay at our home and thought staying in hotel in our hometown would be boring. I was grateful I had read up a lot on autism and was able to some degree to arrange our stay i Malmö to suit her. But there was only so many hours I could stand sitting in the hotel playing UNO.
They weren't manned with enough staff to let her back at the ward on Sunday so we ended up leaving Malmö at 11 am and spend the afternoon at the local movie theater. Back at the ward all the kids were climbing up the walls because the whole place was new. There were meltdowns and anxiety attacks galore. Our new room was huge - stark white and half-empty. So I had to get it looking nice and homey as fast as possible.
On top of all of that, Ida told me right before we left for Sweden that she was seeing beings that stared at her with evil grins and told her to hurt herself. It had apparently been going on for a week. She told me someone (invisible) had entered her room one day saying, "I am a person and there are more like me. We are going to hurt you, often, and that's just how it is."
She had repeatedly been hitting herself with minor things when alone in the room but saw the beings in all places, also in Malmö. If she wasn't feeling too low and there was only one, she could make it disappear if she or someone else crossed it's space. So she would sometimes jump to a spot on the big bed, jump up and down and then wipe her back several times.
It got worse when we got back and the things she reported got worse. I was able to one night to show her description of what she experienced to one of the staff. Apparently Ida was copying the psychosis of her dear friend at the ward.
The conclusion by now is that she is _not_ psychotic. I know from myself how I can create images with my mind that are perfectly vivid. And Ida doesn't even want to go home for the weekend. She knows she is at the ward because she can't walk or talk and that is slowly improving - which would mean going home for good. Or get sick...
In general she's in great spirit with her friends at the ward or the staff and ready to have a meltdown when I take over in the evening. So it's been very difficult to figure out how she actually feels and what I am supposed to do when she wants to kick doors rather than go to bed.
Along with this, she has been practicing speaking and walking with two other children at the ward - without the adults being involved. Her language is growing almost daily. I am now called 'momo' rather than just a sound. She uses letter sounds for spelling. Can say O M G and every once in a while a real word slips in.
Today I was told the staff is getting ready to get her to use crutches rather than the wheel chair. Not that she needs them but for safety. Her fear of walking is that she will run away in panic and not be able to control it. Then this evening she completely blew my mind. We're home for the weekend (still hard for her) and she suddenly stood up on a pillow and showed me how to hold her, like we were dancing. Then we 'danced' to the bathroom. This is the first time I saw her standing since April 4.
She told me she had practiced with her friend (the psychotic girl) and I guess she was now ready to show me. No chance of her doing it outside yet but who cares!
Obviously it is most likely a total coincidence, but a few days ago we received the most thoughtful gift from
Epicurean Pariah. He had created a pendant for both Ida and me and the package was both delayed and lost. But here we are, walking and with pendants. Truly amazing!
) are a lot like mine I might fit the same label but that part doesn't matter much to me anymore. Except perhaps for her to relate to. 
