Sunday, July 31, 2011

The hard, cold facts

This week was like a splash of cold reality.

First, they discharged Pippen on Friday.  This is really interesting because Pippen had an AMAZING tantrum on the unit on Wednesday.  I know, I witnessed the event.  (At least, I witnessed the beginning of it, like the loud POP of a firecracker going off. After that, Conor’s Clinical Assistant immediately jumped up to stand between the two of us and Pippen. I felt like Whitney Houston in The Bodyguard.)

And thus, I am reminded that the goal is an 80% reduction in behaviors.  Not zero behaviors, not 99.99% of behaviors reduced… 80% reduction.

Hey, listen, I know these people aren’t miracle workers.  There’s no magic pill (although that topic is for a future post).  Slogging through an effective behavior program takes discipline, structure, follow through, consistency, and a lot of medication for all of the parties involved.

(One mom is promoting pot brownies and I’m currently researching how to implement this, um, treatment for both of us. I’m all about the science, you know. And it beats eating porcine whipworm eggs.  It’s true—and worked for that kid--but more about that later.)

The cold reality is that when Conor is discharged, he will continue to have behaviors.  Intellectually, I know this.  We’re prepared. It’s the emotional side of me that is struggling to accept it. I just want my snuggle bunny back.  Without the rabid rabbit side.

Second, I recently learned that this is Stacy’s second visit to the NBU.  Holy mary mother of god, we could go through all of this, try our damndest to get Conor better, and return for round two? O.M.G.

(Insert bad Poltergeist II Heather O’Rourke imitation here… “They’re baaaaack!”. Here's the original Poltergeist II trailer... wasn't allowed to embed it.)

Now, I know that this is rare.  And Kennedy Krieger will do everything in their power to try to avoid this happening.  After Conor is discharged, they will follow him for a very long time and continue to help support our family as best as they can.           

But changing behavior that has existed for a long time isn’t easy.  (Jillian Michaels can tell you that.) And it doesn’t happen overnight. 

If Jim and I can’t follow the protocol, if school struggles with the plan, or if Conor’s brain decides to have another firestorm, it IS possible he’d wind up there again.

Hmmm, well, time to take a hot shower to wash away the cold reality.




2 comments:

Christine said...

Do you feel Conor is making good progress in the unit so far? Is it what you expected? Reminder - our son is in the waiting pool as I type....

AlisaRock said...

Right now, Conor is still in "baseline". So they're still doing the Functional Assessment piece and no treatment per se. So if he's making any progress, it's accidental. Based on the tearful loud phone call after I left tonight, he's still having trouble with the same issues. (Tonight was playing the Wii night. Hate that damn Wii.)

Was it what I expected? We didn't really expect him to go inpatient so we had no expectations. We had applied to outpatient, but then he would up in Sheppard Pratt again and from there it was deemed that inpatient was more appropriate. Baseline is taking longer than expected but he had a little bit of a "honeymoon" where they struggled to set off behaviors. He's not honeymooning anymore but it set us back a few weeks.

They need more room, but are moving to a bigger space in October I think? Feel free to email me at mary_alisa_rock@yahoo.com if you'd like to chat more in-depth.