Wednesday, June 13, 2012

Dear Daughter and a Nap

As promised here is one of the stories since DD (Dear Daughter)stopped the medication for headbanging. As you know this is one of the possible serious problems you may have to deal with when you have a child with autism. Not all children with autism headbang or have self injurious behavior. As I'm sure I have said way too many times my oldest daughter is my child with full blown autism. Anyway the medication DD was taking was in short supply so the doctor and I decided to try going without it. There were other medications we could try but it had been many years since we had started this one...11 years. The first thing the provider and I noticed was that she was alot more verbal about what she wanted. Now at my house and now at her own house being a verbal independent person was considered a good thing. I do understand that other peopel value being calm and controled but we were passionate and out spoken. I consider both sides to be equally useful values. Not everyone else has that viewpoint. Although the provider certainly was not complaining, they did share with me that at one point she fussed because they had not warned her that a new staff was coming to her house to train. I agreed with DD. The should be routinely checking with her when there is going to be changes. Then it was my turn. DD called me one Sunday while I was working. We were just chit chatting and I said something to the effect of 'I wish I could take a nap.' DD procedes to remind me that she cannot take a nap because the provider and I have said it wasn't a good idea. In my defence what was happening was the DSP (direct service personnel) were letting her sleep all day and she was up all night. She was up and upset during the night. So no nap. Or at least not one without talking to me or the supervisor. I explained this to DD and changed the subject. This is a technique that had worked and worked easily. DD just forgets about what she is fussing about. At least she forgets most of the time. Which is fine. Somehow we got on the subject of her sister. I told her to call her sister and talk. Maybe a half hour later DD calls me back and says her sister didn't answer. Without thinking I said 'She's probably taking a nap.' DD responded 'A NAP. Why she get to take a nap and I don't.' And on and on. Finally I'm laughing and trying to interrupt to find out who the staff is on duty today. DD tells me and lets me talk to the staff. I ask them to 'Please let her take a nap.' Then I talk to DD and tell her to go ahead. She said, 'Fine!' Considering how difficult it is to facilitate communication when someone has autism I'm thrilled. This is just one of several instances in the past few weeks that she has been easily able to tell me or someone else what is the matter. What's more she's been able to hang onto the subject and follow it through. I really wonder if this is due to the medication being removed. It was and still is more important to me that she is not hurting herself. But given that that behavior seems to be gone...I'm terribly pleased at the difference in the way she thinks. Although I talk about autism behaviors and what to do about them I want her to know what she wants and to make efforts to get it. Autism or not she deserves that.

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