Julia has been a whirlwind today -- with behavior that is all over the place, but work that is what she has not been able to do before -- sequence cards with sentences and taking turns to tell a story on a picture board. Big therapy day, as Mondays are and hopefully we can reduce a bit of her load soon. She was in school until one, then OT, then speech therapy, then two therapists, one after the other, at home. She is fidgety, not directly listening (and not always answering as a sign of listening), demanding, stubborn, wanting her own way in all things, but brilliant. She has started making parts for her clay characters and attaching them to a main body which is a new practice for her. She was listening to Christmas music on Sunday, and started drawing these wonderful reindeer. Oh God, I hope that she can develop sufficiently to use her talents! I wonder what it will be like to know a Julia who is grounded and able to stay on task in any conversation, is able to learn what someone wants to teach her. She could . . . then, I wonder what it will be like to know a Julia who is never able to live without my care, a Julia whose development is always delayed and always very far behind her peers.
Then, I put my own feet on the ground.
I am painting -- trim takes forever! and raking all those leaves that blow over from my neighbor's (who does rake) lawn. and baking. And I better start cleaning for next week as well. Finally, after not working for almost three years, I really like this. I am doing nothing incredible, like I always expected to do. Ego. Yes, ego. Goals refer to Julia and what I can do for her. Goals are what David is going to need. Goals are about making David, Cheshire and Julia happy. I do not do enough. I am lazy. I do more.
I thought I was going to write about how I was doing all these household tasks and spent great amounts of quiet time and had thought some really deep thoughts. But I seem to be at a loss for really deep thoughts tonight.
I talked to another mother who has two girls on the same drug that Julia is on. Julia takes 1 mg in two doses, and with the sleepiness completely worn off, I don't think that it is doing anything for her. This woman's daughter's are taking 2.5 and 5 mgs a day, and she is happy with the results. David will see the doc this week to report on Julia's experience. I suspect that they will change/up her dose.
Information is here and here.
1 comment:
I read. I read every word and I pray. I read every word and I meditate. I read every word and I wish out loud that a hug could be felt through this keyboard.
We love you. All of you.
Traci
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