The problem, I came to see, is that there wasn't an Elizabeth shaped hole, anywhere. She has multiple diagnoses, but what matters in the end is that she has a developmental disability and mental illness. You really aren't allowed to have both, but of course, we've never followed the rules in this family. When it came time to discharge her, way back in October, it became apparent there was no place for her to go to school. CHCCS doesn't have a program for the mentally ill and we were told we had to put a homebound provision in her IEP in case there were any problems in school. We all knew there would be problems at school. Homebound consists of two hours a week with a teacher. The rest of the time she's mine. Which means I couldn't work and besides, that's hardly an education. Try sending YOUR kid to school two hours a week and see how fast you get reported for truancy.
So we started looking around. We'd sit in a meeting while her Developmental Disability care coordinator, Mr. W, and her mental illness care coordinator, Ms. S, and her CRH social worker, Ms. P, talked options. I was there but I wasn't much help because I cried a lot. Mr. W would throw out what sounded like a good plan, but Ms. S had to shake her head no. "Her IQ's too low for that program." We'd sit in silence while they scrolled down on their laptops. "How about this one?" Ms. S would ask. Mr. W would shake HIS head. "They don't take kids with mental illness." Ms. P ventured a suggestion. They both shook their heads. "Cardinal Innovations won't contract with that place." After one particularly frustrating meeting, I said, "So what I'm hearing is she can't come home, she can't stay here, and she can't go anywhere else. Is that correct?" After a short silence, all three agreed: "That seems to be the case."
The good thing about Central Regional is that it's the one place in the state that can't kick her out. It's not meant for eleven month stays, but they'll do it if they have to. Our two psychiatrists were awesome, but what really mattered were her psychologist and her social worker. Dr. S graphed data, looking for patterns, causations, results. He also supervised her therapist intern who made great progress with Elizabeth. Her social worker spent countless hours talking to me, looking for untapped resources, and doing cute craft activities with Elizabeth. None of them ever treated me like I was stupid or a pain. No one ever talked down to me. It's an unusual feeling.
And then in January, we found an option that worked for everyone. An agency called Caring Hands had alternative family living homes, a place she can stay until she is 21. And the home they identified was the one thing we hadn't tried: an extroverted African-American couple with a one year old grandchild living with them. Elizabeth is at her best around small children. We met them and we all fell in love with them. The only hold-up was that they were not yet licensed, but that should only take a month or so, everyone assumed.
Elizabeth's law. Four months later, they were still working on repairs to their very nice house, sneaky problems within the septic tank and well. Although it was costing the state $1200 a day for Elizabeth's hospital care, no one could front the family the money it took to do the repairs. They finally raised it, only to spend it on someone who did substandard work, causing them to once again fail the inspection.
The corollary to Elizabeth's law is that when things go wrong, someone amazing will step forward. In this case it was the contractor working on my school, who went to the home and supervised the work so that it was done correctly, without being paid for it. And this time it was. The fire and sanitation inspection was scheduled for a week out, then another permit, and then to the state for approval.
All that would have been fine, except if she were not out of the hospital by July 30, she lost the funding that made this possible, no exceptions. We all knew that date was there, but it seemed so far away. And then it wasn't any longer. No one was willing to leave it to the 30th, because Elizabeth's law meant that there would be an earthquake or something like that that would prevent her from leaving. So her discharge date was set for July 28.
I should have been very stressed, but I wasn't. My care coordinators and the Caring Hands people were stressed enough for all of us. Adding to the stress was the fact that the NC legislature has access to her medical files and get regular reports on what was happening with her from no less than the CEO of Cardinal Innovations (like the Blue Cross of Medicaid). No one wanted to be the one that messed this up, plus, they all had come to truly care about her. When it because apparent that the first home wasn't going to be licensed in time, Caring Hands identified a backup plan, with an interim foster home until the other was licensed.
Transitions are not Elizabeth's strong suit, and she couldn't see past the time she was with the second home. She wanted to be with the first one and totally shut down when we met the C's, the interim family. They are an older African-American couple with grandchildren and another child already in their home. When we met, Elizabeth wouldn't even look at them. Desperately trying to make conversation, I asked Mr. C if they were Duke people or Carolina people. He laughed and admitted to liking UNC. Elizabeth mumbled, "Holden," a family friend and familiar UNC name. Mr. C looked at her for a moment and then began to talk about what a fine person Holden Thorp was, how Holden had played piano at his brother's retirement party the last year. Elizabeth's head slowly raised, and although she still wasn't happy about the temporary placement, at least we had ascertained that our people knew each other, an important consideration for a southerner.
I had her for a pass on Saturday. We met Claire for lunch and in the middle of the meal Holden called her to tell her how much he liked this family. This meant she was willing to go, as long as we promised her she'd be with the L's soon. She was scared to go to church with them, probably because she was afraid people would think she was like their other child, who had autism and was in a wheelchair. We went thrift store shopping for baby clothes for her doll, which was allowed to go back to the hospital with her this last time. We had tearful times; she wanted to make sure I was still her mom and Claire was still her sister, and that she'd come home someday. I said yes to all three and only one was a lie.
The truth is, she can't live at home with me. Her anxiety is too high and she becomes violent when she does not feel safe. There have been too many injuries, too many police calls, too many long waits in the ER. Central Regional is the only hospital in the state that will still take her and when they don't have open beds, we're up a creek. This foster home has advanced training in all her needs. They are constantly on the go, something she craves. She can be part of a very large extended family, all the same color as she is, and that's important to her. Mr. L has 14 siblings and every single one of them graduated from college. They value the things I do and asked if they could take her to Moral Mondays. Mrs. L is a hairdresser, a real bonus. She has her own room and the house has a security system which helps her anxiety.
The school situation is up in the air. For the summer she'll go to a day treatment program. We'll figure out the school year when it's closer. It pains me to say this, but I'm glad she'll be 16 this year so she can legally quit. There is just no school for her; she cannot function socially with kids her own age. Put her around toddlers and she does just fine. I tried her at JRA; I can help everyone else's kid but I can't teach my own. The most I can hope for is a kind of karma, that the care and help I give to other kids will come back to her through someone else.
It's hard to admit that I am not a success at parenting her. This is not a plea for reassurance, but a simple statement of fact. For one thing, it takes more than one parent to rear this child; I'm thinking five might be just right. Also, she is torn with loving me so much and wanting a different kind of family. The best parenting I can offer right now is to love her unconditionally and let her go. There was a time I thought love could conquer anything, but I was wrong. She has spent three weekends at the L's and it went well. She felt safe and connected. I am still her legal guardian and I am still her mom. She'll come home sometime and we'll still see her. We are just making the family bigger.
She just called me to tell me goodnight. The C's had taken her to their church revival, so she was able to get the scariest part behind her. Mrs. C said she really got into the music, and Elizabeth said it was fun. They had ribs for dinner and their one year old grandchild was staying with them too. Bedtimes are always hard, but it she can get past that, we should be okay. Day treatment starts tomorrow, but not until 1:30.
And I'm okay. Sorta.
