A Treatise on Supports for Conor: Yawn

We just got our first insurance denial letter in the mail.  I’d go into some rant about insurance companies, but I am just so thankful that we’ve made it this far without a fight that I’m not even going to complain once.  (I know, so unlike me.)

This means that Conor will be discharged a few days early.  I am diligently trying to put the support structure in place to make the transition as smooth as possible, and his return home a success. 

As I sat at my kitchen table during the meeting with our new autism services provider, I counted how many people attended.

Besides my husband and myself, there were three people from the provider, and three people from the Kennedy Krieger Institute. Six people.

(And I couldn't even give away one of the bagels I had frantically gone out to buy that morning.  Who doesn't like bagels and cream cheese?)

There were thirteen people at our IEP meeting last Monday, including my husband and myself. (I didn't bring any food this time.  Lesson learned.)

Talk about “It takes a village.”  Mon Dieu.

Honestly, I am tired of being the case manager for my child with autism. I just want to be his mom. Since he was diagnosed, I have yearned to hand over the organizational reins, as it were, to someone else.  Someone who knew what they were doing. (Really, I have no idea.  I'm just good at faking it.)


It would have been nice to tell someone else how I'd like things to go, and then they would hold my hand and say go here, go there, do this, do that.  And voila!  It would be ok.

But, alas, such a person does not exist.  So I am busy busy busy like a little bumblebee, putting things in place for my family to…. well, not exactly be functional.  More like, so we’re not quite as dysfunctional as we used to be. Realistically.

Here’s how things look for my family today.

Each rung stands alone.  I've listed them (top down) in the order of their involvement and responsibility for Conor. 

First, there are the doctors.  Psychiatrist, neurologist, pediatrician, DAN! doctor. I figure that, although we see all of them regularly, they're probably the weakest link in the chain. They don't see Conor that often, sporadically during check ups and refill-required appointments. 


The next rung down is the autism service provider.  This includes the Kennedy Krieger Institute, which will thankfully (THANK YOU) follow Conor for at least two years after his discharge.  Really, just about forever (they're so nice), but technically, two years.  It also includes the Service Provider that we're contracting with to help us with wrap-around services. Wrap-around services are, as the name implies, in-home services that "wrap around" school hours. 


School is pretty self-explanatory.  Until he's 21 years old, Conor is legally entitled to school services. Then he falls off into the abyss, but that's for another post.  (One best written with a bottle of wine. And a benzodiazepine.)


Finally, there are his parents.  Oh wait, that's me.  If all the other rungs fail, we catch him.  And we will.   We always do. I've put my poor extended family at the bottom, because if Jim and I croak at the same time, these poor saps will have to take care of my little guys.  And they'll do a great job. (Suckers.)


The problem with this little ladder metaphor is all the holes.  See them there?  See how many holes Conor could fall through?  How many missteps someone could take climbing the ladder? What if a rung breaks?  What if you used the ladder to try to clean out the gutters and you fell on a concrete patio, causing all your internal organs to swell up and breaking your pelvis?  (This happened to my brother-in-law and it's absolutely fascinating to me. No idea why. He's ok.)


When I start to think about how to compile the supports and services my complex little guy needs, I like to picture it more like a spider web.  

Instead of services being provided independently, rung by rung, as a stand-alone, it would be great if each service would circle around Conor.  (I, of course, would be the black widow spider waiting in the corner of the web to make sure no one screws up when dealing with my kid.  After I'm done devouring my husband, of course. Bwa ha ha ha ha.)


The web would be sticky, so that it would be difficult to escape from a service.  Not in a bad way (don't want to be stuck with a bad service provider or a failing school program, no sir) but in a way that would ensure that my child wouldn't fall through the cracks.  It would give me a little breathing room so I wouldn't feel like I was constantly acting as Conor's case manager.


The problem with this picture is that there are still holes that Conor could slip through. And I don't want to be stuck with a bad or ineffective service provider. I'm still having to be his case manager, acting as the liaison for all the different services and communicating information to each individual person.


I want a personal assistant, damn it.  I've just decided.


Actually, when I think about it, I would like the educational, behavioral, and medical services that my complex guy needs to look like this wonderful, sweet hot pad that my little Aidan made me years ago.

Check it out.


No holes.  Tightly woven.  Handles hot things and cold things equally well.  Each thread is intricately connected to the other.  I do nothing but hold on to it and use it to cook tasty, delicious, nutritious meals for my family.


They communicate with each other; I don't have to be in the middle.  This doesn't mean that they run rough shod over me.  I'm the one in control; after all, I'm holding the hot pad.  It's doing what I tell it to do. But it's doing it together, seamlessly, with everyone on the same page, as the cliche goes.


I don't have to be a case manager.  I can just be Conor's mom.


Maybe one day we'll get there. 

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.