Services

So our first choice for Daughter won't take her because she is an insulin dependent diabetic. I'm waiting to hear about our current top choice. I'm also wondering about the impact the new governor and legislature will have on her services. I'm hoping that she will be established in a program before they begin, because I suspect that it will soon be harder to get any services at all once the n.

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I recently read an article about a couple in a neighboring state who can't get services for their special needs young adult son. He waits in his Dad's pick-up truck while his Dad is working. Yes, his Dad works full time. Soon, it will be too cold for him to sit outside in a pick-up truck all day. Perhaps most concerning were the comments that were made on the article. There wasn't much sympathy for the young man or his family. They should have been planning and preparing for this-- it was their responsibility to take care of him. If they couldn't afford it, they should get additional jobs. I sat here reading the article and comments and thinking about Daughter. Additional jobs. I already work well over 40 hours a week. Every hour I work is another hour that I need to make sure Daughter is safe and supervised.

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Yesterday, when I used the restroom at the church, I noticed that there was a paper towel opened neatly across the top of the waste basket. I lifted it up, and discovered a half eaten bag of pretzels. The church was a polling place on Tuesday, and we forgot to lock up the basement kitchen following the election. I have no idea when Daughter went scavenging and discovered the lapse. I don't follow her when she tells me she needs to go the restroom.

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The results of the election scare me. It seems like all of these new governors are promising to eliminate budget deficits while cutting taxes. To do that will require massive spending cuts. People like Daughter are invisible. Her needs are not understood, or are dismissed. In this state, they aren't even accepting applications for supported living. She will be with me as long as I live. I am going to have to explore adult day care options and find money for that in my budget. My work is flexible, and while I work a lot of hours, I can schedule appointments during my work day. While it is a pain, she can hang out at the church with me.

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I don't think the general public has any concept of the burden a child like Daughter places on a family. I doubt I'd be able to keep a job in a factory or cubicle-- I couldn't drag Daughter along and the hours wouldn't be flexible enough to accommodate all of her appointments. I love my Daughter. I'm grateful to have her in my life. Like most parents, though, I anticipated a day when she would move out and live independently. I anticipated a day when she wouldn't require such close supervision. There aren't many families who would have been able/willing to take her on if they had known what the future would bring. I'm sorry that our society is losing their compassion and willingness to support families like mine.

Chinese

Today has been a busy day. I over scheduled myself this week, and Daughter's drama didn't help. I had a meeting an hour away from here this morning. I dropped Daughter at Daycare (which of course was in the wrong direction, meaning it took much more than an hour) and headed to the meeting. I talked to Case Manager about the plans for Monday and my attorney about my will and such on the drive. After the meeting I had a delightful lunch with 3 friends. I got back to Town at 2:30, and visited two nursing homes (5 people). I dealt with phone calls from Daughter and from the supervisor at the gift shop. She's excited about Daughter coming, and it sounds like the perfect situation for Daughter. Never more than 9 people, quiet and laid back.

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I got home and had to print out the wedding service for a rehearsal this evening. My computer has become more erratic with each passing day, but tonight it out did itself. A portion of the service was in Chinese. I didn't even know my computer spoke Chinese. I did convince it to give me an English version. After the rehearsal, Daughter and I came home and just sat for a few minutes, then we cleaned out the car and ate supper. I have to leave at 7:30 tomorrow for a seminar an hour from here. I'm taking three of the saints with me, so I decided we'd best make room for them to sit in the car. We'll leave a little early so I can be back by 3:30 for the wedding at 4:30.

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Daughter and I had a quiet, cooperative evening. She told me how much she'd miss me tomorrow. They are going to go out to eat and to a movie and shopping. She'll have fun. I hope Daughter will do a little cleaning in the morning. The change in her is amazing. I'm grateful, because the schedule I have this weekend would have been much more challenging if she had continued to run away and be oppositional. I will enjoy her calm for however long it lasts.

Psychiatrist

When we saw Psychiatrist this week, I was hoping for a med change to make life easier. She told me (again) that she didn't think this was a medication issue, but a developmental issue and the way someone with poor coping skills handles extreme stress. Not what I wanted to hear. But, I have to say, she knows her stuff, and I'm grateful we found her. Therapist tried to refer someone to her this week, and she's not taking new patients.

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Anyway, Daughter was completely different after hearing she'd be starting at the gift shop on Monday. She is happy, cooperative, and she didn't wet the bed last night. Today she's going to daycare. I have a meeting and nursing home visits. Therapist is going to see her at the daycare center. She'll think I was hallucinating the behaviors when she talks to Daughter today.

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I hope Daughter will remain happy for an extended period of time. It would make my life so much easier.

Voices?

Daughter claimed last night that she's hearing voices again, and told me I was lucky because they were telling her to beat me with our big flashlight. Do I believe her? No. I think she was feeling very guilty, and her guilt generally comes out as anger and a desire to run away. She was quite dramatic, though, and very defiant. She brought the Love You Forever book from her room and stood in front of me and tore it apart and put it in the waste basket.

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I didn't help much by seeking to increase her guilt. I informed her she was stomping on my heart, and if she'd like, I'd take it out to make it easier for her to stomp some more. The most frustrating part of all of this for me is that she showed me in every way she could that she can not be left unsupervised at all. I had made the mistake of sending her back over to the house to get a couple of things for the senior luncheon.

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She also showed that she's not ready to be anywhere near any of the workshop crowd. This week I am only taking her to daycare 2 days. Next week it will be at least 3 days. I don't care how much it costs, my sanity is worth more.

The Plan

So today I finally sat down and developed a job list. There are certain jobs Daughter is expected to do as a member of the family: keep her bedroom clean, take care of her cat and one other chore, today's is taking out the trash. Then there is a list of other jobs that need to be done around the house. They are broken down by room and task, and there is a price attached to each. If she does the task properly the first time, she gets the full amount. If she has to redo it once, she gets 50% of it, and if it still isn't right, she doesn't get anything. She read over the list as we drove to see Psychiatrist, and thought it was good. When we got home and she looked again, she came and told me she was overwhelmed. I explained it again. She decided that tonight she's just going to do the daily tasks. She'll work on the jobs that earn her money the days she's home all day.

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Psychiatrist told Daughter she needs to decide if she wants to grow up or not. She also needs to dump Flasher. She told me that she doesn't think she's cycling, she thinks this is the developmental conflict. There is no medication for it. I asked if there was medication for the mom. She just smiled. She did think pulling her out of the workshop was good.

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We waited over an hour for Psychiatrist. They announced she had an emergency and we could reschedule, but it takes us an hour to get there, so I decided I'd rather wait. I seem to have picked up an intestinal bug someplace. I didn't get much sleep last night, and today has had its challenges, but I'm managing. Hopefully I will get a good night's sleep tonight and tomorrow will be a better day. This is a full week, so I need to be productive every day.

Seven Minutes

I told Daughter yesterday afternoon that I hoped she was going to do her share around here, but I wasn't going to assign her specific chores because I didn't want her to start arguing with me. So, she came home yesterday and wrote down a list of things she was going to do around the house, not just to earn money, but because she wanted to share the work, or so she said. I looked over the list and told her I thought it was a bit more than she could handle, but that I was glad she wanted to work and to go ahead and get started. I was busy doing laundry. She went upstairs with a bag, I suspect to clean out the litter box, and then came back downstairs and sat down and watched me sort and fold the whites. I told her if she wasn't going to work, she needed to go to her room, she wasn't going to sit around watching me work (which just causes my blood pressure to go up and results in me eventually saying unhelpful things).

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When I went upstairs a little bit later to put some of her clothes away, she was in her room with a stack of DVD's watching her portable DVD player. I took the DVD player away. If you aren't going to help, you aren't going to have access to electronics. I was called names and told that I had no right to keep her from the one true love of her life. She came downstairs and demanded her cell phone, telling me I had no right to keep it from her. I explained to her that she didn't have to work, but if she didn't work, she wasn't going to have access to things like cell phones and DVD players, as they cost money, and when you don't work, you don't have money. She threatened to call the police. I said that was fine. She disappeared upstairs with the land line and the phone book.

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When she came back downstairs she'd changed her clothes. She was wearing stretch pants and a camisole. She headed out the front door. I asked where she was going, and she announced she was going to Town. I asked how she was going to get there, fearful that she had found someone willing to come pick her up, and she announced that she was walking. It's 11 miles to Town. I said it would be a long walk. She said she didn't care. I told her I'd see her when she got back.

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She was gone 7 minutes. I decided I'd best time it in case she got far enough that I needed to go looking for her or report her missing. She came back in and shouted, "I hate it when you're right!" and returned to her bedroom. When I made her come downstairs for evening pills and insulin, I informed her that she could only wear one outfit a day. Since she wasn't helping out, I didn't want her creating extra laundry that I have to wash. She's still asleep. I'm not going to wake her up. I'm going to enjoy the calm before the storm begins.

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Obviously, she's not in a good place. My own patience has reached its limits. I am feeling slightly overwhelmed by all that I need to get done. Having her in Adult Daycare is expensive both financially and in terms of my time. I'm going to set my priorities for the day and work at not getting sucked into her drama. It will be a challenge, to say the least.

Sigh

Nurse just called from the Adult Daycare Center. She was ready to call the squad because Daughter had gone out on them. She was sure her blood sugar had crashed. I assured her Daughter was conning her. She was convinced it was real. I told her to check her blood sugar, and if it was low, she could call the squad. She called back, "I guess you know your daughter." I told her to just ignore her. They used a wheel chair to move her to a recliner so she could rest.

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Today I'm frustrated. I am having a hard time finding an organist for a wedding I have May 1st. I've been so distracted, I put it off too long. I'm frustrated by the lack of resources in this area. I'm wondering if she will ever be able to go back to the workshop, and how long I continue to spend lots of money to provide her care. After all, I'm cheap. I'm frustrated because consequences don't motivate her, and I can't figure out what does. I'm tired of the lying. I'm tired of the extra laundry. I'm tired of having to keep things locked up. She managed to sneak more food upstairs this week.

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Yesterday I could see God's hand at work in this, and I still do today. But that doesn't mean that this isn't stressful and I'm not tired. I'm going to write about where I see God's hand, but not right now. Right now I'm going to feel sorry for myself. I'll get over it.