30 November 2011

From Sunday (27 November 2011): Ashley, our newest therapist, is over for the first session after our week away. Julia is so excited to see her. Ya’ think she is tired of her mother?? Ashley asked Julia about her week away and also who those people -- Lisa, Nick and Michael -- are. Julia did not know what to say. I helped out, asking if they were her aunt and uncle or her cousins. She said no to those suggestions. Finally, she said, “They are my special family. And I love them.”

And now, today. I am at the surgery center waiting for my every 10 year colonoscopy. I have some waiting around and down time but if all goes well I will be done quickly. The benefit of coming in early. From what I remember 10 year ago, there wasn’t as much prep as there is now. I had instructions to change my eating habits for 5 days before the procedure, and to change to a diet which is just toxic to my health and weight -- no fiber, protein, milk products, white rice, white potatoes. They did not say all the sugar that I wanted, but refined sugar products would have fit the bill. By Sunday, I was pretty disgusted with the limitations and so I started fasting. Between a few days of fasting and the electrolyte solution last night, I am probably cleaner inside than I have ever been.

The IV has been started and I sit waiting. Amy brought be here this morning and she will come back to get me. The need for a friend to drive and listen to the doctor when the procedure is over which I knew about from the last time and which I heard about when the appointment was made in August was another jolt. This was what a partner did/does. In the surgery center now, as they ask questions, put on my bracelet, start the IV, I have such memories of David’s hospitalizations. There is no reason but i want to tell the nurses about David -- a strange impulse. Maybe I just don’t want to hold the memories alone.

But I do.

Julia did well in math group yesterday but she did manage some picking in the bathroom. I have to call her doctor today to find out whether I can continue to give her benydryl. Right now, she is taking it in the morning and before bed. I think it does help although it lowers her energy. A third dose in the middle of the school day might make the end of the day easier for her, might keep her from picking on the school bus. In phone tag with her doc, I am getting a referral to dermatology, although I don’t hold out much hope for that. It may take a month or two for dermatology to get back to us, and this isn’t really a dermatological problem. I also dread going over the story three or four times for a new specialist, who could read it all in the chart but whose administrator, nurse, and nurse practitioner will want it spelled out for them.

Just met the doctor. A nice, quiet man, but without much bedside manner. Not that I need any for a test given once in ten years.

Again, I’ve been losing my temper with Julia over her picking. It is not just her picking but her silence when I ask what she is doing, or where she picked. A week’s worth of healing gone in a second. My frustration climbs and I cannot be a bad enough mother to impress on her how serious this is. I know. I know. It all does no good. And then I feel awful that I was so mean to her. A vicious cycle that does no good for no one.

For medication right now, I have been discouraged to use benedryl for a third time during the day but will get a refill on the antihistamine for her to take during the day. Amy also gave me a wound and itch salve which is made with all natural ingredients. It is in a little tin and Julia can take it to school to use giving her a measure of control over the circumstances.

I also had a long talk with our psychologist on the autism team today. Her advice is to hit her hard with the consequences. Very behavioral, feels awful but she says that it works and short term pain is work long term gain. She wants to reduce the number of chances Julia gets in school so to ensure that she is sent home on a regular basis until she makes the effort to control herself. Also, at home, to go back to the losing dinosaur consequences and to do it often, returning the dinosaurs once a week or so, but making the consequence swift and immediate. She also didn’t think I should drive Julia to school, rather I should consider taping on the gloves so that the don’t come off easily, and if I or the teachers find she has picked, as evidenced by blood, she loses a chance or a dinosaur whichever is appropriate. Really tough love. We will work on rules by the end of the week to start on the weekend.

And then there is the possibility that it is the Adderall (ADHD med) that is exacerbating the habit of picking into a tic. And I have a call into her drug doc for that one. I want to solve this. I want to get back to our life before bug bites. Last week, Michael (14 and thoughtful) asked, what are you going to do next summer? Good questions. Answer: Oy!

Early evening: I have a lovely and perfect colon and took a variety of naps afterwards. I was thinking of doing a bit of work but have tripped up the stairs twice and decided to lay low for the day. I put the car in the garage in expectation of some snow. Did not unpack any breakables today.

An adoption friend, whose daughter comes from the same orphanage that Julia does and a child who looks like she could be Julia’s blood relative, posted a picture of her daughter at five. A very mature looking picture in the way that kids can strike a pose and suddenly look like adults. A magical insight of the future. She looked mature and knowing. And because she looks like Julia, it gives me certain pain. I have never seen such a look on Julia. At five this child looks years beyond Julia at 10. And it send me to worry and fret. What will the future bring to my girl. It is almost not a question. Just a wonder.

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