Long Exasperated Sigh

CBAY waiver meeting on Wednesday was productive. They will take our treatment plan to their supervisors and negotiate our "christmas wish list" of the wrap around services we've requested. I felt buoyed after the meeting, like there might actually be hope. My ego received more boosting as the CBAY reps were quite pleased with my knowledge, my ability to put into action phrases the things Sissy needs and mine and The Dad's enthusiasm to work as a team toward Sissy's ultimate success. Even Ms T from the IFI team was there, supporting and helping.

CBAY said that since they are a federal waiver, they can tap medicaid money, that essentially, since Sissy is their client, when CBAY requests services for her, the services are billed to the state. In other words, if CBAY and IFI feel that Sissy needs a revisit to RTC or a group home, they might be able to make that happen. The CBAY team was aghast that Sissy was sent home after only 100 days. Most of their clients, apparently, have spent as much as two YEARS at the RTC Sissy was at.

But by Friday night The Dad was exasperated and I was in tears again. Had to call Ms T to deescalate, more rage, more primal screaming, more of everything. Whenever the team comes to the home, it makes Sissy worse and Ms M had come for her usual Friday night therapy session but had to leave early on an crisis call with another client. You can imagine the crap Sissy pulled as a result.

When i called Ms T two hours later, I apologized for being emotional and interrupting her dinner out. I attempted to explain the scenario leading up to Sissy's rage but it didn't matter. Ms T and I came to the same conclusion, the situations that escalate Sissy are different every time, we can't plan for every scenario. She's off the charts uncontrollable. Ms T is puzzled by her anger, says she's given Sissy every tool she knows to thwart the rage. Says that when she works with Sissy, the child is able to parrot back what she's been taught, making Ms T think she is comprehending what she's learned. Ms T admits that maybe she hasn't learned it at all and that it's definitely time to revisit the rage in the family sessions.

Ms M called at 8:30 this morning making sure we didn't need her to finish Friday's therapy session since she had to leave early. I told her about the crisis call we had to make. Ms M pretty much said what Ms T said. It is unexplainable. Sissy is unpredictable, demonstrates that she understand what they teach her but refuses to use those skills when applicable, etc. Ms M admitted that she has exhausted her repertoire of skills to help Sissy and will consult with her supervisors for more suggestions.

I'm tired of her primal screaming. I'm tired of her punching herself, the wall, the bed, the glass doors. I'm tired of her hurling stuff. I'm tired of having to pull myself together so I can make sure Aspie Boy and Wonder Girl are OK. I'm tired of living in crisis with Sissy. I'm tired of living on egg shells. I can't take it anymore. She's been home 7 weeks today and with the exception of saying she wants to die, she has returned to every single one of her old issues. The kicker is this time, she's doing it despite the enormous wealth of resources we've tapped into.

We see the psychiatrist on Thursday, the first visit with him since last November when he filed the request that she be placed in RTC. I'm not going to have exciting news for him. Short of making a minor med adjustment as recommended by a few med savvy moms, there isn't anything he's going to be able to do for us.

When all the doctors and therapists have used up their skill set to help a child and they admit that they're not sure what's going on, what on earth are the PARENTS supposed to do?!?

I can't think about it anymore. It all feels so hopeless. Sissy simply won't change.