Monday, October 31, 2011

Whoop Whoop

This weekend, my husband complimented me on my ability to feign enthusiasm during my structured time with Conor.


After catching my eye, he smiled and wondered aloud if I’m good at feigning enthusiasm in, ahem, other parts of my life.

“No, baby, I never have to feign enthusiasm with you,” I replied, giving him a kiss.  “I’m not that good an actress anyway.”

“As long as you don’t start yelling “whoop whoop”, I’ll be ok,” he chuckled.


Saturday, October 29, 2011

Little Black Box

Conor came home four days ago, and that deserves its own post.  But we've been busy managing the transition, which has been significant for all of us. More about THAT later.

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

Conor, Can You Hear Me Now?

I’d forgotten how exhausting it is to take care of Conor.  Being his 1:1 can be fun and I love being with him when he’s happy, but it also can be boring, repetitive, and difficult.

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.

What I have to tell you now is very embarrassing. (I can't believe I'm even telling you this.)

While I’m being Conor’s CA, I have started yelling at Conor.  But not yelling as in “you’ve done something wrong and I’m angry.”  (Lord, no, that would be bad.)

Ok, deep breath.  Here it goes.

I’ve become that little old lady who tries to converse with a non-English speaker and thinks talking louder will make him understand me more.


I have no idea why I do this.  I try hard not to.  But it’s similar to when I feed a baby.  Every time I offer up the spoonful of pureed food to the baby's mouth, my mouth opens.  When the baby eats the food off the spoon, my mouth closes.

Open. Close. Open. Close.  I’m like a guppy, for god’s sake.

Luckily for me, the only person laughing at with me as I speak loudly to Conor is my husband. And he's been laughing at me for various reasons over the last seventeen years, so I'm  used to that.


Wednesday, October 26, 2011

I Think I'm Going to Throw Up

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.
A couple years ago, I got sick.  I mean, really, really sick.  Cancel a trip to Paris sick.  Stop drinking wine and eating red meat sick. Give up the coffee, chocolate and caffeine sick. Sick as the sickest dog.

I’d had trouble with my digestive system for awhile. But this. This was different.

Lay in bed, run to the bathroom.  Rinse.  Repeat.  Two long weeks until I was finally able to move to the couch on the first floor.  Lost twelve pounds.  (Best diet results ever. Don’t recommend it though.)

At one point, I was on three or four different medications to try to control my various symptoms.

I don’t think I left the house for a month except to visit my general practitioner and a gastroenterologist.

Casting about for help, I called my brother –in-law; he’s a neurologist. I was having what I thought were possible neurological symptoms as well.  (And let me tell you, it is pretty awkward to describe your GI symptoms to your brother-in-law.  I mean, yuck.)

I lamented that the doctors I had consulted thought my illness was due to the fact that I was crazy.  (I have a kid with autism after all, it must drive me crazy.)

“You may be crazy, Alisa, that’s true,” he assured me with a smile in his voice, “and you can be sick at the same time. The challenge is to figure out what’s what.”

Thanks, Pete.  Appreciate that. Everyone’s a comedian.

Over the years, I have stopped telling new doctors that I have a child with autism. At least, I don’t bring it up on the first or second visit.

“Any stress in your life?” they inevitably asked.  

“Me? Nope.  No stress, no way. Well, the stress of being a stay-at-home and/or working mom,” I would titter, depending on what I was doing at the time.

Because I knew that if they heard I had a child with autism, stress and anxiety became the de factor answer for anything, really.  Forget the existence of germs, bacteria, viruses, parasites, mold spores, air pollution, organ failure, cancer, cardiac arrest, and allergies, whatever I had at the time was caused by stress and anxiety. And, of course, the old standby for all women...depression.

Heart palpitations?  Stress.

Fatigue and breathlessness? Stress.

Diarrhea and nausea? Stress. Anxiety.

Constipation and intestinal pain? Stress.

Muscle aches and joint pain? Depressed.
(Oh, there’s a new one. Hadn’t heard THAT one before.)

Insomnia?  Stress. Depression.  Side effect of the medication for stress and depression.

Sleeping too much?  Stress.  And depression.

Hair loss?  Stress.

Vaginal yeast infection? Stress.

Athlete’s foot?  Stress.

Hangnail?  Anxiety.

Zit on my ass?  Stress. Depression.

It got to be ridiculous.  Here was a common exchange with some of the doctors that I consulted for my mystery illness.

“You seem depressed,” they would say.

“I’m sick. As a dog. “ I would counter, clenching my stomach and trying not to roll my eyes.

“No, it’s just, you look really down, tired,” they’d continue.

“I can barely leave the house (there’s no toilet in my car, you know), I have no energy, and I’m not sleeping at night,” I’d reply.

“Ok, so you’re depressed.”  Me: “NO! I am SICK,” I would forcefully say.

Finally, I wound up in the office of an elderly neurologist who did a thorough exam.  I described my symptoms, my history, and yes, I told him I had a child with autism. 

And he believed me.  He understood that I probably had Irritable Bowel Syndrome and that I had tremendous stress in my life.  But he also understood that this was different. 

He thought it was most likely a virus, and would just take time to improve.  It took me a good six or eight months to feel truly well again.  I gave up gluten, a lot of milk products, and have consumed copious amounts of beneficial bacteria. 

Thankfully, I feel well enough to drink red wine again, and enjoy coffee! They’re mommy’s little helpers, after all.  And maybe one day, I’ll get to Paris.

Or at least be able to eat a chocolate croissant.

Monday, October 24, 2011

Curtain call

I've hung the curtains.  I've hired the autism service provider.  They've hired an as-yet unmet instructor who can start immediately. We've been trained.  School's been trained.  Aidan's in therapy again. I've gone grocery shopping. Twice. I've earmarked five slow cooker recipes.

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.

Fingers crossed.

Sunday, October 23, 2011

48 hours

In less than 48 hours, Conor will be discharged from Kennedy Krieger Institute's NeuroBehavioral Unit and will come home.

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

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. 

Monday, October 17, 2011

A Little Bit of This and a Little Bit of That

Conor's being discharged two days early.  Insurance says he's had such stellar behavior, he doesn't need to be inpatient anymore.  School's still being trained; we'll see how that goes.

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

A Structured Life

Twelve more days until Conor is discharged.

Last night, I ran into two moms on the unit.  They were really interested in what steps we were taking to prepare for Conor’s return home.  We talked about repairing busted walls, reorganizing various rooms in our homes, respite care on the weekends, and discussions with school personnel.  (Conor gets out of the pokey on a Thursday, and he better be going to school on Friday, that’s all I have to say about that!)

But there was one word that kept coming up again and again and again in my conversations with the moms.  Structure. 

How can we provide the structure our children need to be successful outside of the unit?

Unit life is the ultimate structured life.  Conor’s day is literally broken down into half hour increments.  From reveille at 7:30am to lights out at 9:30pm, his 1:1 and behavior team script his entire day.  Don’t get me wrong; he has time for fun stuff, like “unit activity”, community outings, and his treasure chest time.  (Treasure chest time is what he earns for good behavior, like playing the Wii or getting on a computer. Unit activities range from a group game of Pictionary, to coloring, to a short movie, for example.)  On the weekends, there is time for just hanging out, or an additional community outing.

But someone is by his side 24 hours a day with a typed schedule, a token board, and a limited number of activities. They follow the prescribed treatment protocol to the letter, with staff specifically assigned to assure protocol adherence.

He doesn’t eat alone, he doesn’t dress alone, he doesn’t bathe alone, he doesn’t sleep alone, and he doesn’t poop alone.

The door to the unit is locked and he can’t escape unless he has been signed out in the care of his parents, or with his 1:1.

It feels quite daunting, to be honest.  Are we going to be able to do this? Can we provide the structure that he needs to be successful? 

Success=not going bazooka, mind you.

Home life is not unit life.  On the unit, at various times, he has his clinical assistant, his behavioral therapist, the assistant behavioral therapist, an intern, a nurse, a supervisor, and a psychiatrist.  There is the behavioral head of the clinic, the assistant behavioral head of the clinic, the special educators, and then the head-head of the clinic, Dr. Big Cheese.  We have an assigned social worker, and… well, you get the picture.

But, given his recent weeks-long run of stellar behavior, structure is exactly what he needs to succeed. And a hell of a lot of support.

Evidently, it takes a lot to ensure the success of my son.  A lot of people, a lot of love, a lot of planning, a ton of nurturing, a healthy smattering of patience, and, to be crude, a shitload of money.

Can we do it, at home?

Friday, October 14, 2011

My Own Cinderella Story

Each night now, Conor walks the second floor hallways in an effort to get a little more exercise.  It gets him off the unit, too, for a (slight) change of scenery. Same fluorescent lights, but at least it’s quieter and he has some room to walk around without bumping into another patient or Clinical Assistant.

A few nights ago, Conor started this funny walk.  He started walking on the sides of his feet and then sometimes doing this funny goose step. He sang La La La at the top of his voice.

Great, I thought to myself, another stupid behavior to have to try to fix.

“Conor, walk correctly,” I told him firmly.

“Why should Conor walk correctly?” he asked, pointing at his chest.

“So you don’t hurt your foot,” I said, trying not to roll my eyes. So people won’t think I’m teaching you to be a Nazi with the goose stepping, I thought to myself.

After a few nights of this, I take a closer look at his shoes.  His big toe is really poking the top of the shoe.  I bend down and pretend that I know what I’m doing when I feel his big toe, like the guy at Nordstroms’ children’s shoe department.

Hmmmm, I thought.  Maybe he’s grown out of his sneakers.

Since Conor asked to go to a small mall nearby on his earned outing today, I asked his therapist to help us buy new shoes.  I thought briefly about just going to get the next half size up, but since we’re here anyway, I might as well have his foot measured.

Conor’s come a long way with having his foot measured.  Believe it or not, when he was five years old, Conor would actually have a whale of tantrum when someone tried to measure his foot.  God knows why.  It got so bad that I bought one of the foot measurement doohickeys myself so I could do it at home.  Seriously. Stupid, I know.

“He’s a size 6,” the sales woman announced.

“Excuse me?  Did you say a size 6?” I asked incredulously.

I looked at his sneakers.  They were a size 4 ½.

I could not believe it.  Such an autism mom rookie mistake.

Despite all his skills, despite all his expressive language, sometimes Conor just doesn’t won’t can’t communicate what is going on.  He can’t simply tell me, “Yo Mom, I need new kicks.” (Or whatever kids say these days.) Instead, he walks on the edge of his foot and does a weird goose step.

Poor kid.  Makes me wonder what else I’ve been missing all these years.

Wednesday, October 12, 2011

Like Mother, Like Son?

At the end of the last school year, Aidan (my typical child) received a stellar report from his teacher. She had some words of advice, however, as he made the transition from second grade to third grade.

Aidan would benefit from practicing his writing every day during summer vacation to prepare him for the increased rigors of third grade.

Ugh, I thought.  I love writing, but alas, my second kid does not.  The tears, the sweat, the heartache we have endured during the last school year have been epic.  It’s those Wade genes, with their love of science and math that dominate my progeny, I mutter to myself.  (Quietly, so that my husband doesn’t hear. Although, to be honest, my sister-in-law forewarned me about the dominant Wade genes.)

To entice my 9-year-old freckled-faced redhead to write, I offered to set him up on a blog.  He’s always dying to read what I’m writing, although I don’t let him since I consider it “adult material”.  Ah, the forbidden fruit.

But setting up a blog was harder than I expected, at least for a 9 year-old.  I guess, in the weird way we have now of trying to protect kids online, there aren’t any blog sites for kids, at least not that I could find. I guess nine is considered too young for a blog of his own? (Really?  Sounds like a GREAT language arts project to me.)

And then Conor went bazooka and we began to deal with his hospitalizations.  I have no idea what we’ve been doing the last three months without Conor in the house, but (bad mommy) I have just recently set up the promised blog for Aidan.  (I lied about his age, so nanny-nanny boo-boo, Eric Schmidt. Next thing you know, I’ll be buying Aidan beer and Playboys.)

We started working on the blog last night, and Aidan wrote a nice bit about Halloween and inserted some pretty cool graphics.  Then he pressed the wrong button and poof!  Away went his (ahem, our) work.

So when we sat down tonight to re-write the post, I thought it would quick and easy.  (Those are the best types of projects with kids, right?  Quick and easy. Like dot-to-dots, you can’t mess those things up.)

He starts typing in the title.  “Conor coming home.”

“Uh oh”, I thought to myself.  “OMG, what is he doing? What happened to Halloween?”

“Mom, how do you spell ‘probably’?”

“Mom, how do you spell ‘Kennedy’?”

“Mom, how do you spell ‘Krieger’?”

He inserted pictures of puzzle pieces (“That’s the autism symbol, right Mom, puzzle pieces?”).  Then he searched for pictures of Conor.

Here’s what Aidan wrote:

I don't know how Conor is going to behave when he comes home?
But he is going to be better I know it will be better
I know it. The picture above is my brother as you probably know.
He is coming from Kennedy Krieger at the 27 of
October I'm so excited!We can finally play video games

Like every great writer, he has left me speechless.  He has so much love for a brother that gives mostly stress and chaos in return. Aidan has such high hopes. It’s amazing to me.

And I bet he’s going to have more followers than I ever will.  Awesome, Aidan.  Just awesome.

Tuesday, October 11, 2011

Tick Tock Tick Tock

Sixteen more days until Conor is discharged from the NBU.  The clock is ticking.

I feel like most women do in their ninth month of pregnancy.  You know what I mean.  That point where you’re over the fun, relaxing, don’t-care-how-much-you-eat-or-weigh part and have moved on to the I-don’t-care-if–I-do-have-to–push-a-10lb-watermelon-sized-object-through-my-vagina, just-get-this-thing-out-of-me-already part.

I have grown weary of life on the unit.  I’ve wearied of the near constant din, the dizzying array of smelly smells, the constant small talk with the Clinical Assistants.  Don’t get me wrong, the overwhelming majority of them are quite nice.  It’s just, well, I’m a bit of an introvert, so trying to make nice conversation for two hours a day with someone I don’t know very well (and is probably twenty years my junior) is exhausting for me.

I’m weary of packing up the lunches, the dinners, to drive down to the unit for my picky eater.  At least he’s eating more fruits and vegetables, more protein, I tell myself as I pack and unpack the dirty Tupperware again and again and again. Even if I do have to make sure Arikawe doesn’t grab for it, since he hates whatever is on his tray.

I’m sick of the fluorescent lights, the plastic chairs, and the bins of baby toys that try to occupy the kids. Of course, everything on the unit has to be indestructible, but it doesn’t make for a homey atmosphere.  It’s not like visiting a nice school or an inviting group home with comfy couches.  Even the comfy chairs on the ward are covered with vomit- and urine-proof fabric, out of necessity.

I’m exhausted by the nightly phone calls from Conor, repeating his litany of wishes and desires and obsessions.   What do you want to talk about tonight, Conor? I ask him.  On Sunday, Conor will download a video from Kelly Clarkson called Already Gone on Conor’s computer?  On Sunday, Conor will download a song from Dire Straits called So Far Away on Conor’s computer?  On Sunday, Conor will buy the Alicia Keys CD on the Amazon?  On Sunday, Conor will listen to Mommy’s iPhone on Treasure Chest time?  Ok, bye.

“Sleep tight.  I love you, Conor…    I love you, Conor…     I love you, Conor…” 

“I love you Mommy, bye.”

Sixteen more days.  I hope I’m ready.  I’m almost ready.  I think I am, anyway.


Sunday, October 09, 2011

The Blame Game

I met a new mom on the unit.  I mean, she’s not a new mom, her son’s seventeen, but he just landed on the unit today. I always jump at the chance to chat up moms of children on the spectrum. So when I ran into her in the parent lounge, I wasted no time introducing myself.  I think she was a little taken aback.

“Hi, I’m Alisa, I’m Conor W.’s mom and I see that your son is on the unit now.”  I’m like an aggressive cat; I just pounce on the poor woman. I shake her hand.

I’m not sure why I do this (I do it often, believe me) but I like to think I’m “networking”.  It sounds so much better than, “I’m nosy and desperate for camaraderie”.

I don’t care, I’ve met four other moms of children on the unit this way. The support is helpful.

Adriana is from New Jersey.  She sounded like Carmella Soprano and resembled an older Snookie from Jersey Shore.  Her daughter is a ringer for Meadow Soprano.

Well, ok, she’s clearly Italian, she does come from New Jersey, and is remarkably pretty and pulled together. She had a fab-u-louspurse. (In clear contrast with the sheen of dried sweat I was wearing from my unexpected 5k run that morning and my backpack.  Don’t ask.)

We immediately began swapping “what brings you here?” and “what medications are you giving your son?” stories.

“My son is on Abilify, but first he was on Risperidone, but it made him really fat and didn’t help AT ALL, it didn’t touch the behaviors, so we’re trying the Abilify, and the doctor took him off the Depakote but we felt that was really helping,” I spouted off.

“Antonio was on Risperidone and he gained 10 lbs each time we raised the dose.  It would work for a few months, then we would have to increase the milligrams, and then he would gain more weight.  Then, he got the tardive*,” she said.

“I blame myself,” Adriana confessed.

This really confused me.  Even if she was a doctor, she shouldn’t be prescribing for her own kid, at least that’s what I’ve been told.

“What do you mean?” I asked.  “You obviously were working with a doctor, right?”

“I didn’t really like that doctor,” she told me.  “My husband liked him, but I didn’t trust him. I should have known better.”

All afternoon, this thought poked at me.  Irritated me. You know, like a popcorn kernel stuck between your molars.

Why does this mom blame herself for decisions that hopefully were made in consultation with a competent medical professional? 

Of course, it’s a rhetorical question.  I, too, blame myself.  For everything. I should have known, I would tell myself.  I should have done something differently.  I should have stayed up later, read more journals.  I should have been able to prevent it. (Whatever IT was.)  I should have seen it coming.

For me (and again, it’s MY blog so it’s all about ME), I think blaming myself boils down to this.

I want to be in control.

I want to know that if I do X and then I do Y and then maybe if I do Z, nothing bad will happen to my kid, and my kid will make progress and BEHAVE.

But autism isn’t like that, I guess.  Well, life isn’t like that, but life with autism REALLY isn’t like that. Sometimes, no matter how hard I try, it just doesn't work in my favor.

Sometimes, you just have to go where the autism takes you. But grrrrr, that’s so HARD for me.  I’m not exactly a fly-by-the-seat-of-my-pants kind of gal, you know?  I like to have a plan.  It’s not surprising that I specialized in strategic planning during my M.B.A. program. Duh.

It feels a little like my Acura’s G.P.S. system. Go ahead and plug in the address. And you might get to the right place in the end (or not), but you may wind up going through the ghetto on your way there.

*Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements, such as grimacing, tongue protrusion, lip smacking, puckering and pursing of the lips, and rapid eye blinking. Rapid movements of the extremities may also occur. Impaired movements of the fingers may also appear.

Maybe if I drink enough Pinot Noir, I can blame the alcohol instead of myself.

Wednesday, October 05, 2011

Conor, you say what?

The behavioral team on the unit is working really hard to help Conor learn to manage his mands.  Mands=Verbal Requests.  

I have no idea why everything in the disability world has a different term for the same thing, but that's just the way it is.  Couldn't we just call them requests?*

We're working on this because 1) it's really annoying; 2) it's often a precursor to agitation or problem behavior; 3) it gets in the way of social interaction; and 4) it's REALLY fucking annoying.  

Anyhow,  Conor mands a lot.  And his requests are not always appropriate or even make sense. (So maybe they're really perseverations?  Perseverations=obsessions.  Whatever. Don't ask.)

"Want to punch the car over there!"  

"Want the street lights to blink!" 

"You can't put your hands in your pants at the McGurkins!" 
(Ok, so THAT one I understand. I just don't need to hear it every 30 seconds.)

The current tactic doesn't seem to be making a dent in the nonsensical requests, so Polly emailed me their current thinking. "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."

That's not all she wrote, of course, but suffice to say, I looked at the email and this is what I initally read.

"We looked through Lorem ipsum dolor sit amet, consectetur adipisicing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

Look, I know I'm not a stupid woman. (At least, I don't think so.) I mean, I'm no rocket scientist, but I've got two college degrees.  You would think that I could figure this out.  

Founding father
of psychology
"Maxi" to his friends
It's just, well... Wilhem Maximillian Wundt, forgive me, but I hate psychology.

When I read psychology literature, I can literally feel my eyes crossing and my brain starts to hurt. I had one psychology class in college.  I did ok (well, I passed anyway), but, mercy, it was painful. All that talk about rat sex, I mean, really, who needs it? (Well, apparently, rats do.  A lot.  But that's another topic for another blog.)

Seriously, I don't understand typical people's behavior on a good day, much less what is going on in the brain of someone with a communication disorder. I just wish it wasn't so complicated, so complex. 

Why is everything with Conor so HARD?

With Conor's treatments and protocols, I need a translator.  Some tutoring.  At the very least, a pot of coffee, three different color highlighters, and some time to digest the recommendation.  For my typical kid, this is what I get:

"Aidan would benefit from practicing his writing and reading every day over the summer.  This will help prepare him for the increased workload as he enters third grade."

Ah, now THAT I understand!

*From Wikipedia:
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

Conor's Budget Talk

My father is a Certified Public Accountant.  This fact might lead you to believe that he has taught me to stay within a reasonable budget.  Silly you.

Despite his myriad efforts, alas, the accountant gene appears to be recessive.  Staying within a budget seems to escape me.  My husband jokes that he needs to do a Target intervention.

I call Target the $100 store.  I go in for a bottle of laundry detergent and some mascara, and boom!  Next thing you know I’ve got a cart full of stuff I didn’t even know I needed. It’s like my crack house.

Conor seems to have inherited my love of retail therapy, and it has caused us considerable problems in the past.  It feeds quite nicely into his compulsion to acquire objets d’obsessions.

I swear it all started in our efforts to teach him how to behave during community outings. When he was very young, we would actually pay therapists to take him to stores and teach him how to stay with us in the store, stick to the list (ha!), wait in line patiently, to not have a tantrum when he couldn’t turn on the ceiling fan.

“You can’t turn on the ceiling fans in the store!” he’d exclaim loudly.  (Eventually, he got the concept.)

As a reward, he would often be able to purchase an item.  If a $4 calculator got him out of the store without a tantrum, I considered it a good investment.  (I scraped by in my Finance class, you can tell.)

It was nice being able to take him with me to do my errands.  I’ve met plenty of parents who simply cannot take their loved one with autism to the grocery store or, gasp, Target. (I know, can you imagine?) 

As he got older, however, and the craziness set in, telling Conor “no” without an ensuing mega-tantrum got harder and harder. It kind of put a damper on things, to say the least. Our trips together to Target faded away. (I still went by myself, though.  I mean, I can't be expected to give up Target.)

And then he discovered

He calls it “The Amazon”.  Sure, he can’t buy something without our password, but denying the compulsion for the calculator or the puzzle would inevitably lead to tantrums.  So more often than not, I’d grit my teeth and order the damn calculator already.

It’s not that we can’t afford the purchases, we can, but all the consuming would just get stuck in my craw and drive me nuts.  Some days, it seemed as if every sentence Conor spoke started with “I want”.

“I want I want I want I want I want I want I want I want I want I want I want I want I want I want

Honestly, I was amazed at how quickly our bills dropped when Conor went on the unit. (The credit card bills.  Haven’t gotten the bill for the co-pay yet. Yikes.) 

So I was thrilled when the NBU behaviorists wanted to work on the shopping. (Conor's, not mine.) 

After all, it fed directly into his compulsions, which then fed into his tantrums. They suggested we put a budget into place.

Thirty dollars a week. 

That’s ok, I’ll wait for you to stop rolling your eyes and laughing.  Believe me, the behaviorists and the Clinical Assistants are still teasing us. “Man, $30 dollars?  I’d like a $30 allowance, momma needs a new bag.”

Ok, it’s not THAT funny. 

I know, it’s a big budget for a twelve year old.  But we wanted to allow him to be able to buy his beloved puzzles, and some of them are around $25.

It’s going spectacularly, frighteningly well.  He really gets it. Most weeks, he doesn't even spend the entire amount.

Except yesterday, on the way up the stairs with my husband, Conor says, “You get money out of the ATM, right Daddy?”  Oh boy.

But why don’t I let Conor explain for himself.

He may not be frugal with my money, but he is with the timing on the video.  So I had to cut it off at 2:21 or he wouldn’t be happy! (I’ve promised that he can watch himself on YouTube.)

Sunday, October 02, 2011

Mommy's little helpers

The espresso machine...
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.