Monday, October 31, 2011
Saturday, October 29, 2011
One of the biggest changes is the amount of structure that we now have to provide for Conor. The unit scheduled activities down to the half hour. Whew.
We quickly run out of ideas of how to entertain him, since he doesn't watch TV very much and he has to earn his time on his beloved screens (Wii, computer, DS, iPad, iTouch) with good behavior.
So, we've dreamed up this little black box of ideas. It's filled with index cards with activities, exercises, little outings and yes, even chores that we can do with Conor.
Yesterday, Conor chose "Make a video and put it on YouTube." I guess it sounded better than Set The Table, which I still made him do later.
He wanted to talk about school. Three days at school without a tantrum, whoo hoo! Progress.
I started making videos with Conor and posting them on YouTube while Conor was on the NBU. My husband's extended family lives hundreds of miles away, and don't get to see Conor often. (Or any of the rest of us, for that matter.) So I started taking videos and posting them.
Here you go! By the way, his behavior team gave him this awesome gingham shirt, together with a pile of other gifts. So nice.
Thursday, October 27, 2011
To help me be more alert and involved (and less emotional), I now pretend that I’m Conor’s Clinical Assistant. I have to carry around the token boards anyway, might as well.
The therapist at KKI quite nicely provided a carabiner so that I can wear the token boards on my belt or hook it onto a pocket. I keep his request book in a central place so he can run and get it if he starts pelting me with requests.
Luckily for me, the only person laughing
"CONOR, COME SET THE TABLE AND THEN YOU CAN BOUNCE THE BALL FOR TEN MINUTES. AWESOME JOB, KID, AWESOME!!!!! YOU ROCK!!!!!!!!"
Wednesday, October 26, 2011
|For those who may not know, this is |
a picture symbol.
Picture symbols are regularly used to
help individuals with autism communicate their feelings.
This one is self-explanatory.
I don’t think I left the house for a month except to visit my general practitioner and a gastroenterologist.
Or at least be able to eat a chocolate croissant.
Monday, October 24, 2011
We're ready. As ready as we'll ever be. I think. I hope.
This is what Conor's room looked like when he went into the unit. I feel like it accurately reflects the disorganization of his mind, and thus, the chaos of our lives. I'm not sure the pictures do it justice. It was a jumble of pictures, pottery, wall stickers, clocks, and knick knacks.
Can you see the autographed copy of Cal Ripkin Jr.'s picture in the middle one? I've confiscated that for my office.
Since Conor's been on the unit, I've taken the opportunity to redecorate. (Because that's what's important, what his room looks like. I'm rolling my eyes at myself.) It helps me, though, to feel like we're starting fresh, anew, with a clean slate. No more holes in the wall, no more dents memoralizing past head bangs.
Here's what Conor's room looks like now. (I should mention that red is Conor's favorite color.)
I tried to take out as much of the chaos as possible, while still maintaining Conor's favorite things. His love of red, his Black Dog welcome sign, his beloved collage picture frames, his art therapy projects. Love them. He has the solar system hanging from his ceiling.
Quite a Build-A-Bear collection, eh? I've put any pottery that he loves up high so he can't grab them and make them projectiles during the inevitable tantrum. But he can still see them, and admire them, and know that they are still very much his.
He wanted red walls, but I was afraid to paint all four such a vibrant color. I'm not happy with the blah-ness of the beige walls, but I figure I can work on that later. (Don't tell my husband.) Quite honestly, the red walls look great, it's the beige ones that need warming up. (Another project on the honey-do list, I guess.)
To help address the blah-ness, I've hung some of his treasured items. A clock, a mirror he painted, collage picture frames yet to be filled, a light he insisted on keeping lighted all night. I think that's Venus, the planet hanging there.
I'm hoping he won't notice the stickers are all gone. (I can be strong, I know I can. Just say no, Alisa, just say no to replacing bad wall art stickers.)
I know it doesn't really matter what his bedroom looks like. Even though it makes me feel better emotionally, I know it's not important. In the end, all that is important is that his behavior improves, he makes progress, and our lives become more functional, more manageable, more enjoyable.
Sunday, October 23, 2011
I would like to say that this is how I feel~
Unfortunately, I am a churning mass of anxiety, nervousness, depression, fearfulness and resignation mixed in with a fair dose of determination, hopefulness, wishfulness, wistfullness, and gratitude. It makes me quite nauseous, actually.
I would say I really feel more like this~
|One of my favorite paintings, The Scream by Edvard Munch|
In the end, it doesn't matter what I feel, really. In less than 48 hours, my behaviorally-challenged son with autism, Tourettes, and (maybe, could be?) a mood disorder will be home full time again.
Tuesday, October 18, 2011
Besides my husband and myself, there were three people from the provider, and three people from the Kennedy Krieger Institute. Six people.
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.
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.
Monday, October 17, 2011
Conor had a tantrum on the unit today.
Just when you think things are looking up, things start looking, well, like reality again.
I've picked out curtains for Conor's room. Because that's really important, what his bedroom curtains look like. I guess if I can't control the behavior, I can control what the curtains look like. At least things will look like they're ok, even when they're not.
Up and down, up and down, back and forth, back and forth. Love love love that mood swing!
I've run out of wine, and I'm thinking about running to the liquor store when Aidan goes to sleep. I'm not going to, though, because that would signal that I have a drinking PROBLEM. Instead, I am going to have dairy-free cookie dough ice cream with a generous helping of Hershey chocolate sauce.
Whatever gets you through the night, is all right.
Saturday, October 15, 2011
Friday, October 14, 2011
Wednesday, October 12, 2011
Tuesday, October 11, 2011
Sunday, October 09, 2011
Wednesday, October 05, 2011
We looked through past literature about verbal perseverations and found that the most used treatment is DRA + Extinction. What this means is that inappropriate verbal perseverations are completely ignored and the DRA is just the reinforcement of the appropriate verbal behavior."
"Maxi" to his friends
Mand is a term that B.F. Skinner used to describe a verbal operant in which the response is reinforced by a characteristic consequence and is therefore under the functional control of relevant conditions of deprivation or aversive stimulation. One cannot determine, based on form alone, whether a response is a mand; it is necessary to know the kinds of variables controlling a response in order to identify a verbal operant. A mand is sometimes said to "specify its reinforcement" although this is not always the case. Skinner introduced the mand as one of six primary verbal operants in his 1957 work, Verbal Behavior. Mands differ from other verbal operants in that they primarily benefit the speaker, whereas other verbal operants function primarily for the benefit of the listener. This is not to say that mands function exclusively in favor of the speaker, however; Skinner gives the example of the advice, "Go west!" as having the potential to yield consequences which will be reinforcing to both speaker and listener. When warnings such as "Look out!" are heeded, the listener may avoid aversive stimulation.
Monday, October 03, 2011
Sunday, October 02, 2011
because sometimes, Mommy needs a little pick-me-up to keep up with Conor all day.
The Pinot Noir--
because sometimes, Mommy needs a little put-me-down after keeping up with Conor all day.