Just like the pain of childbirth, I forget the cold, the cold coldness of the cold during the spring and summer and fall. And wow, it is cold. A big below zero without any wind chill calculated in. I have a house to clean up, food shopping, Christmas shopping, a few calls and maybe if I am efficient, an after noon bath. Anyway, that is the goal.
Julia and I went to see her drug doc, and together we decided to change her meds. The guanfacine is putting her to sleep. I had slowed the racing mind a bit but it is no magic fix. We are stepping her down and off the drug over the next week. Marilyn suggested that we wait a few days to begin the new drug to see what Julia is like free of anything. Sensible suggestion -- one of those things that I think I should have thought of myself, but then Marilyn is the expert. The past two sessions with Marilyn, Julia has sat with me for an hour and a half, curled up beside me, looking at books, interrupting, and playing with me while I talk to Marilyn. The interrupting is not really fun, but her ease is great. Is this the drug or a new change? And do we will figure that out to an extent.
We are going to put Julia on a low dose of a stimulant for the next few weeks. We are keeping the guanfacine in reserve right now. It might be a good thing to use with a stimulant.
The use of drugs and the mixing of drugs has been so hard for me to take, but I am beginning to accept that it will take time for us to find the right mix for Julia. We did get a reaction to the guanfacine and although it was not what we wanted, it gave us some reduction of the motor running in her head. I am not optimistic yet about finding some mix of drugs that will adjust Julia's challenging behavior, but I am moving from the pessimistic pose.
On the plus side, Julia's daily behavior reports since we increased the guanfacine to 1.5 mg a day, have improved. She is getting better socially -- approaching kids in very appropriate ways at school on more than one occasion. Her latest approach was in gym class when she asked a boy from another class to practice volley ball with her. Sheila, on of her aides, said that Julia had an incredibly big smile on her face while she practiced serving the ball to this little boy.
Sheila also told me yesterday that Julia read through a level 4 book missing only a few words. She had read this book before but it was last week. Level 4 is no big deal for a second grader but Julia was at level 1 when the year started, so I am pretty impressed. In our work at home, she is learning words at a faster pace, not as fast as Cheshire did but quicker than she was a few months ago. She is getting more proficient at guessing the word from context and from the pictures. Sometimes giving me the initial letter sound also cues her to remember the whole word.
Tomorrow, Julia and I will go and have breakfast with Santa. This is an event put on by a local agency that treats kids with challenges. I am hoping for fun. Julia has a long list of what she wants. We shall see what she remembers to ask for, or if the whole experience overwhelms her into silence. Yes, that does occasionally happen. Not often.
14 more sleeps before Christmas. Julia's count down. She cannot count backwards herself, but she willingly takes the number from us and repeats it often throughout the day, especially at bedtime. I do believe that next year she will be able to do the countdown herself.
Marilyn were talking about teasing out the intertwined strans of Julia's challenges -- the trauma, the attachment, the autism, what whatever else there is tangled in that mind. The mix, the dependence, the effect of one condition on the others makes an untangling almost impossible, but Marilyn theorised that it could be that Julia decided long ago, on an unconscious level of course, that the best way to live with the deprivation that was all around her, was to escape into a make believe world. That Julia's incredible ability to imagine was her coping mechanism until it took her over and became her world. And now, it is up to us to pull her into our world without destroying the brilliant coping skills she has. Our pulling her into our world is the building of our attachment, the parent-child bond that we constantly work on. If she can completely bond with us, maybe she can let go of the need to live in her own world.
An interesting theory. Doesn't change our treatment, but put a different frame around it. Julia is afflicted with fiction.
1 comment:
Love the way you forget about the snow, like you forgot the pain of childbirth and other pains.
Something about the therapy piece as it captured my imagination.
Marilyn probably has it. I wonder if she knows about someone called Karen Savlov and her theory of the incomplete attachment in autism spectrum conditions.
Savlov's latest piece is My fantasy family, my existence. The boy and Julia might share some things in common.
I also can see that a fantasy world can be created out of deprivations that a person may see/perceive. For instance, a child may not have brothers or sisters or may want to be able to live in a brick house or may miss their Dad when he goes off to work.
Puts a new meaning onto Love and imagination!. I didn't think it was Julia's ability to imagine at first.
Another thing I learnt about yesterday was the concept of ambigious loss. Two types: the first is physical absence, psychological presence; the second, psychological absence, physical presence. The woman who studies it is called Pauline Boss. I found it from clicking on a music therapist's website. And I also liked the six stages/tips which people go through.
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