Behind Door #1

Today I walked past Conor's bedroom about six times.  And it scares me to think that I've gotten used to not opening that closed door.

Smell Ya Later

It’s not the first thing you notice when you step on the NBU.  No, that’s the noise.  But if you visit often enough, you’ll come to the same conclusion that I have.

The NBU could use some Glade Air Freshener.

It’s quite possible that it’s because I visit mostly at meal times.  Anyone who has been in a hospital or a nursing home knows that the food doesn’t smell appetizing.  It’s not like walking into Cipriani’s in downtown Manhattan. It’s hospital food.  

Canned green beans, instant whipped potatoes, oven-fried chicken… ok, the chicken sounds all right, but seriously? 

P-U.

And (I know it’s a shocker, but bear with me, I’m going to be a little, ahem, indelicate here), individuals with autism and other developmental disabilities don’t have the same, well, “issues” surrounding flatulence as you and I do.

Better out than in, Shrek always says.

I swear, Larry T. could make his butt a flame-thrower at dinner. If he had a lighter and some fraternity brothers, they could really light that shit UP. 

Of course, he’s not alone.  Conor has no problem squeezing one out during dinner.  Or any other time, for that matter.  We all get a good chuckle out of it.  Sometimes, even Conor chuckles.

(I do require that he say “Excuse me” though. We must mind our manners, even if we have autism.)

In all seriousness, it’s a fact of life that individuals with cognitive, intellectual and/or developmental disabilities may have difficulty being toilet trained.  It’s not surprising. They eat, sleep, and poop, just like you.  (I’m looking the other way.  Roses, baby.  Roses.) 

On top of this, they probably have sensory issues, making this fact of bodily function difficult for them.

It’s life, you know?  And life can be stinky.  That’s cool.  That’s why SC Johnson has introduced the Limited Fall Collection of new scents. Leaves crunching, the cocoon of a wool sweater, hot cider on a brisk afternoon, you can brighten those gray fall days with bursts of citrus, clove and red berries.

Now, could someone please help Shavonne change Maureen, ‘cause I’m DYING over here.

Do What I Say

Tuesday afternoon, I visited the unit for parent training.  Any kind of training in the autism area makes me a little anxious, since I always feel waaaay over my head.

Sad to say, even after ten years of coping with my son's disorder, professionals can still give me the pre-test jitters. 

I just don’t know what the hell I’m doing.

As I stood in the bedroom-turned-training-room, I thought I was going to pass out.  The room started swaying and I felt a little dizzy.  But when the ceiling started crackling, I realized I wasn’t having a panic attack.  It was the EARTHQUAKE OF 2011. (Insert screaming sounds here.)

This did not seem a propitious start to my training on Conor’s treatment protocol. 

My pre-test jitters were not helped by the realization that a 23 year-old coed was going to be taking data on ME.  I guess they need this for insurance, I don’t know, that’s what I was told. 

But it felt weird, having to go through this stilted training process with someone timing me, critiquing me, and making dashes on the page.  This young woman was probably thinking….

Who is this mom and why can’t she figure this out already?

The whole thing felt ♪awkward♪.

One working theory (not the main one): Conor may tantrum when you make demands on him. Not every single time, but enough that they want to address it.  So we practice the treatment for task avoidance.

The treatment for task avoidance?  Don’t let him avoid the task. He can tantrum all he wants, but by god, he’s going to do that task.

You WILL fold that towel, Conor.  FOLD IT.

Training consisted of me making demands on Polly, the therapist who was pretending to be Conor. 

(For the record, I hate role play; I feel stupid. I may be a better actor than Steven Seagal, but that’s not saying much.) 

If Polly did the task, I should say “Good job!” or “You’re awesome” or something along those lines.  If she didn’t, I would model the task.

“Here’s how you do it, sweetie,” I would say, doing the task.  “Like this.”

If Polly did the task, another “Good job!”  If she didn’t, I would put my hands on Polly’s hands and do hand-over-hand to complete the task.  All I could say was “Okay” after forcing her to do the task.

(Have I mentioned my aversion to touching someone that I don’t know really well?  I don’t know how massage therapists do it, all the touching and skin-to-skin contact with practical strangers.  Ew.)

No, wait, it gets better.  Since Conor may have (ahem) behaviors while trying to get out of the demand, I have to be trained in how to manage his challenging behaviors. 

Thus, on Tuesday, I also learned the “stinky grip”.  It’s one of many grips, I guess. My one hand grips the meaty part of the forearm, the other grabs his shoulder with the thumb in his armpit (hence, the “stinky” part of the grip).  This is supposed to keep him facing away from me, while allowing me to try to re-direct him back to his chair.

Have I mentioned how much I don’t like touching people I don’t know?  Especially in their (ugh) armpit?  I think I mistakenly touched Polly’s boob as well, while she was flailing around in her pretend tantrum.

Yeah, I’m sure it was good for her, too.

Squirrel Brain

I’m sure it will forever remain a mystery, but I would like to know one thing. 

Why is it that, on some days, language comes so easily to Conor.  But on other days, trying to get him to communicate seems like an insurmountable task.

And it’s not because he doesn’t want to talk.  You ask him a question, and you can see that his brain is running running running to try to get the information. 

But his brain just can’t get to it. It’s like the squirrels in his brain can’t remember where they hid the nuts.

“What did you and Daddy do today, Conor?”

“Conor, what did you do today? Did you go somewhere?”

“Con, you and Daddy went out today, where did you go?”

“CONOR, where did you go today with Daddy, Miss Polly, and Miss Sharon on the outing you earned?”

“Sweetie, what did you do today? Did you play miniature golf with Daddy?”

To which he replies, “Conor and Daddy played miniature golf.”

Finally.

No, the OTHER little blue pill

With all due respect to Dr. Temple Grandin and other self-advocates, when there is a pill to cure my son’s autism, I will shove that medicine down his throat so fast.  So fast.

And when he’s normal (we all know what normal is, people), when he’s finished college, and he’s got a job (however meager) and he’s fighting with his spouse and picking up poop from his dog in his own yard and his car is having mechanical trouble and he’s trying to figure out how he can afford Ravens tickets this year and he wants another loan, I will handle his anger over being cured.

I can handle that.  It’s this current state of affairs that I’m struggling with.

Kiss me, you fool

Last week, I walked out of the unit with Larry T. and his parents.  (They were taking him out for a Therapeutic Leave of Absence, an up to four-hour release from the unit that families are allowed. A.k.a, TLOAs.)

Larry signed that he wanted to hold my hand. And then, it happened.

He kissed me.  Right on the back of my hand.  It was so sweet.  At least twice, if not three times.

I felt so special and warm inside.

Then last night, I saw him, the cad.  Signing to all the female Clinical Assistants that he wanted a kiss on the cheek.

And that’s when I knew.  I knew he’d been kissing other girls.  I feel so cheap and used.

Welcome to the Jungle

A new kid came onto the unit yesterday.  I was there when they walked him in.

All the Clinical Assistants stood up and starting banging their metal cups on trays, screaming "Fresh meat, fresh meat, fresh meat" as he walked by.

Nah, just foolin' with ya.


It's funny, you know.  Conor's been on the unit since June 28th.  That's, what, 51 days now? (I was an English major; check my math.)

It suddenly struck me as I watched Jimmy P. walk with his C/A. Conor's an old timer.  He's been in the pokey for awhile now, and we're used to the things that were so shocking at first.

I'm not sure I'll ever be truly comfortable with Conor being on the unit.  I like to have him under my own roof so I can keep an eye on him, make sure that he's comfortable and well tended. I make sure his nails are cut, his teeth are brushed and flossed, the retainer is scrubbed, and his underwear is clean.  Ok, I'm just a little neurotic. In the land of helicopter Moms, I'm an AH-64A Apache. (Dork alert.)

Let's just say that placing Conor on the unit required a lot of trust from me.  And I've got issues with trust.  My therapist will confirm this.

But this is where he needs to be right now and, finally, we're settling into a routine. My husband and I know what to expect, and most of the employees on the unit know our faces and who we are searching for as we come onto the unit.

I know where all the patient bathrooms are, and sometimes the Clinical Assistants yell down the hall to me as I walk... "Is Bathroom 3 open?  I've got Big Ricky coming out."  Yeah, I holler back, Bathroom 3 is open, and then I promptly get the hell out of Big Ricky's way.  He's got at least two people on him at all times, and often a third.  (They don't call him Big Ricky for no reason.)

If Conor requests another cranberry juice, I dash to the patient refrigerator to grab a spare.  If the kitchen neglects to put the salt and pepper packet on the tray, I grab a couple from the stash. I know which comfy sofa is Maureen's, which big room is Juan's, and exactly what to say to Tristan if he hits himself in the neck.  ("That's awful, Tristan, don't hurt yourself."  We hear this all the time when Conor eats dinner because they eat in the same room.)

I know some of the staff call Miss Patrice "Sugar" and that most of the Clinical Assistants jump a little when she speaks to them.  Miss Patrice is a supervisor, and she calls me "Mom." (To be honest, she intimidates me a little too.  Ok, a lot. I find I say "Yes ma'am" when she speaks to me.)

I'm not sure where Jimmy P. lives when he's not in the pokey at KKI.  My husband and I are fortunate that the unit is ten minutes from our home.  We can visit our son whenever we want and he comes home for visits every Sunday.  Some patients are from as far away as Florida and Boston, while others are here in Maryland and Pennsylvania.  Maybe we'll meet Jimmy P.'s parents, but maybe we won't.

In the meantime, I'd like to welcome Jimmy P. to the unit, and I hope for the best for him. The transition can be tough for the kids; it was for my little man.  And I'm sure his parents have had a really rough time lately.

Here's to the new kid on the cell block...

(I'm totally bummed I can't embed the video, but click on YouTube for a flashback. It's sooooo worth it to see Axl Rose with that hair and those skinny leather pants, awesome.)

Golf. Yawn.

I don't understand why men and women talk endlessly about golf and putts and chipping and the shots they've made as if they are high school love conquests.  

Yawn.

 

It's not like someone's throwing a hard ball at your head going 95 miles an hour (baseball).  You don't run a marathon each time you play (soccer).  

Unless someone hits a really bad shot, nothing's going to be hit by a stick and rocketed back into your mouth, knocking out your front teeth or breaking your nose (hockey). 

(Although my brother-in-law did almost lose an eye playing golf, which prompted multiple "It's all fun and games until you get an eye poked out" jokes. He got smacked with an errant shot off a tree.  Freak accident.)

You can't drown (open water swimming) or be seriously physically injured (horseback riding).  You don't have a 400 lb man coming at you whose sole purpose is to knock you flat on your keister (football).  I guess basketball's pretty safe, but I wouldn't want to see 250lbs of the Shaq Attack coming down on my head after a rebound.

 

See, it IS possible to think of things other than autism.  Or your kid with autism.  When your child with autism is on a locked unit with 30 people trained to support him, yes, my dear, yes you can.

Bringing Crazy Back

Today we just discovered that the psychiatrist in charge of the unit took Conor off of his Depakote about 10 days ago, I guess.

Boy, does this explain a lot.  Why the crazy came back this past week.

(For those that may not know, Depakote is an anti-convulsant that is used to help control mood instability and aggression in children with autism. Also, it is regularly prescribed for individuals with bipolar disorder.)

And they readily reported that, yes indeed, my son DOES have a mood disorder on top of the autism and the Tourettes.

"Well," I said aloud, "it's good to know that the Depakote was helping."  What I sang in my mind was, told ya so, told ya so, nanny nanny boo boo. Ppppttttthhhh.

I really shouldn't be so mean spirited about it.  This is their job, to manipulate the medication and figure out what's working, what's not, and to parse out what is behavioral and what is medical. If they weren’t changing things around, I think I’d be pretty disappointed.

And they are willing to listen to our ideas about new medications and therapies to try.  It’s nice because it means a lot of research on their end and I’m glad they’re willing to put the time and effort into helping Conor.

It's just that I've felt for the past year that no one believed us when we said Conor was acting crazy at the beginning of all this nonsense a year and a half ago. (Has it only been that long? Feels like forever.)

People listened, doctors nodded, assistants took notes, and everyone was quite polite. 

No, no, really, I would say, his behavior was just… crazy.  He’d tantrum for no reason at all, and he wouldn’t stop even if you gave him everything he wanted.  (This would last for days. Not minutes, not hours… days.)

But I still felt like they might be thinking...this kid is just so spoiled. Because the Depakote took the crazy away and left us with the learned behaviors.

I'm not being fair.  I know I’m not.  I’m just being crabby and petty because I have a mini-hangover today, and now I have to truly come to terms with the fact that my son not only has a severe developmental disability and a tic disorder, he also has a budding mental illness.  (I was half-hoping they’d tell me the mood disorder thing was a mistake.)

As if any one of the three wouldn’t be difficult enough, in and of itself.

I guess it’s nice that it’s confirmed.  Not just a working theory. Maybe now we can figure out what to do to help my son cope with his three diagnoses.

Really, does my son really have autism, Tourettes and a mood disorder?  Really? Really?

Well, it may be ugly when they bring crazy back, but it’s hot when Justin Timberlake brought sexy back.

Ok, it’s a bit of a stretch but I couldn’t resist; he’s so cute and it's an excuse to watch the video! Ready ladies?

Fight for Your Right to Party

Now that Conor’s been on the NBU for a couple of months, I’ve started to take advantage of the fact that he’s in the pokey until at least the end of October.  We’ve gone on vacation, albeit separately, and I’ve taken some time to travel with my typical kid to Busch Gardens.  (Courtesy of my Mom and Dad, gotta love that. Free vacation, whoopee!)

I’ve reorganized some closets and have five boxes of unwanted items to donate to Goodwill.  (I know, I know, I’m a dork.)

I’ve gotten a babysitter for Aidan and dragged my husband to a romantic comedy.  (Midnight in Paris, highly recommended and Owen Wilson’s hair didn’t even bother me.)

I’ve called the painter and I’m going to get Conor’s room fixed up since it’s a disaster and hasn’t been touched in the last ten years.

But now…

I’m starting to have a hankering to host a real throw-down.

In the interest of full disclosure, I should admit that I’ve been known to enjoy a party.  Or two. Or three.  Well, you get the picture. My last name's not Rock for nothin'.

Jimmy and I haven’t had a party at our house in years.  Hell, we practically haven’t had our family over for a visit on a Sunday afternoon.  It’s just been way too hard to try to do anything of the sort.

But now that Conor’s on the unit and only comes home for visits once a week…  I think I may try to convince my husband to throw a really BIG BASH.  You know the kind… you invite all the neighbors so that they don’t call the cops on the noise and whatnot. 

Friends you haven’t seen in years come to visit and bunk on the third floor in sleeping bags.  (They’ll be so drunk, they won’t even notice that the air conditioning doesn’t work so well up there.)

We’ll serve Andy Nelsons’ Bar-B-Q (“hogs smell better roasted” and they taste better too yum yum) and catch up with all the people we haven’t seen in years.

Copious amounts of wine will be drunk, beer will be guzzled, and we’ll laugh at the couple that we had to drag out of the bathroom.  (Get a room, will ya? We’re over forty, for Christ’s sake!)

We’ll stay up past (gasp) twelve o’clock!

The house will be a disaster, I will have spilled red wine all over my shirt, and it will take us a whole week to recover but, hell, who cares?  We’ll have had such a fab-u-lous time.

Sounds nice, doesn’t it?  I think the guilt might kill me, but it could be worth it.

Party on Wayne.  Party on Garth.

A Regression Story

About a week ago, a Facebook friend of mine posted a video of her son, prior to his regression into autism.  I marvel at her emotional strength to even watch this video.  Personally, I’m a little glad I don’t have video of Conor prior to his regression.  I think it would hurt too much to watch.

I mean, the PROOF that your child was typical, that you aren't a CRAZY mom who just didn't WANT to see the signs.

Ok, maybe a video would have been helpful. Just sayin'.

I sit and stare sometimes, though, at the still pictures I have of my son prior to his regression. And, I must admit, those taken during the regression.  I search and search for clues that I might have missed.

Like this picture above…  that’s me on the left before I had Lasik surgery. (Boy, did I need some highlights. I must have been still breastfeeding.  Or unusually frugal.)

The bald one, that’s Conor.  He’s probably about 7 months old here?  8 months old?  He’s the only kid referencing a parent in the photo.  The rest are still typical… his cousins. (It's one of those panaromic photos that my scanner couldn't fit all together.  Meh.)

Or this one, I think he's a year old?  We're reading together.  Joint attention, anyone? Or maybe I'm just fooling myself... maybe I just want it to be true.  But you can't always get what you want...

Once he regressed, his referencing and joint attention disappeared. Poof.  Gone. Like bad Bellatrix Lestrange/Death Eater magic. But that haircut stuck around.  I still have it!

To me, Conor’s regression took seven days.  We were on vacation on a tropical island with two of our closest friends. My friend Tim teased me about how often I was saying, “Conor, use your words.”  Because instead of using the 100+ words he had (and the two and three word sentences), Conor just…. well, screamed.

It’s not funny, I told Tim.  He’s not using any of his words. I was frustrated.  I didn’t know that I should have been terrified.  (That came later.)

Here’s a picture of Conor during his regression. 

He’s looking away, no more referencing.  What you don’t see in the picture is the beautiful pool in front of this outdoor sink.  A pool Conor wouldn’t go in.  Every time we tried, he just screamed.

He wouldn’t put his feet on the beautiful white sand at the beach.  It was as if it hurt him to touch it.  My husband and I were perplexed.  

Instead of swimming in the beautiful water and enjoying the tropical beach, Conor threw rocks one after another into the water (on the rocky beach, not the sandy one), sat in the sink, and demanded to sit in the minivan we rented.  

We had a beautiful house, with a playmate (albeit a younger one), a pool, a beach, and toys galore. And Conor wanted to sit in a sweltering minivan. 

Oh, did I mention it was a bjillion degrees in the minivan?  St. John is a tropical island, after all.

My husband and I didn’t know what to make of it.  We were exhausted because Conor had stopped sleeping through the night too.

By the time we arrived home, we were tired and scared. What do you do when your child stops looking at you, except when you sing "Take Me Out to the Ball Game?" You know what to do when your child has a fever, when they break an arm or swallow a quarter.  But what do you do when they stop talking, stop sleeping, stop being there?

Yeah, that about sums it up Conor!

Well, you do a lot.  But that's for another post.

Lovely Lady Lumps

When I go to visit Conor tonight at the NBU, I just know all the C/As will be twittering and giggling at me.

Let me explain.

The policy on the unit is that the Clinical Assistant (C/A) must be within an arm’s length of their assigned patient at all times.  This means that our visits with Conor always have a C/A within earshot.

Last week, for example, I found myself in a discussion with two Clinical Assistants about how much hair braiding costs versus relaxers versus dreadlocks.  And I’m the whitest girl on the planet, so you can imagine how out of my depth I was. (I cannot believe how much these ladies pay to get their hair done.  Wow, and I thought I paid a lot.)

Long story short, you get to know the Clinical Assistants pretty well.  And you tend to make conversation with each other, trying to involve Conor to get him to chat.

Yesterday, the C/A asked Conor to tell her the name of his favorite Black Eyed Peas song. They know he listens to his iTouch all the time.

And in a booming voice, in front of my husband, Conor declares… “My Humps.”

For those of you who do not listen to the Black Eyed Peas, “My Humps” is dedicated to, well, lovely lady lumps.  Don’t make me spell it out for you.  We’re all adults here.

Amidst much raucous laughter, my husband immediately threw me under the bus, declaring that there is no way HE listens to the Black Eyed Peas, he is NOT that cool, and it is Conor’s MOTHER that is encouraging him to listen to this rap/dance music.

Well, yes, I listen to the six-time Grammy award-winning Black Eyed Peas.  I have a few of their albums.  And “My Humps” won them a Grammy for Best Pop Performance by a Duo or Group in 2007.  (I am SO sticking my tongue out at my husband right now.)

So, Conor listens to Grammy-award-winning music, oh yes, he does.  He does not, however, get to watch the video.  But you can…  it’s a catchy little ditty.

Top Ten List

I’m tired of all the depressing news.  (I’ll be happy if I never hear the words “debt ceiling” again.) So in the spirit of David Letterman (is he even still on the air? Alive, even? Monogamous?), here are 10 positive things about having a child with autism.

10.“My son has autism” gets you a pass in public most times, even though you know that your typical kid acts that stupid too.

9. You know who your friends are.

8. You don’t take babysitters for granted.  You can handle my kid? Here’s an extra twenty to make sure you come back.

7. We get to pre-board airplanes. Trust me, it’s better for everyone involved. (Unless, of course, you’re stuck on the tarmac for two hours.  Then, pass the Bloody Mary.  On second thought, make that two.)

6. I don’t worry when it comes to lying about my age.  Conor’s happy to tell everyone exactly how old I am and when my next birthday is scheduled.

5. I always have someone willing to go to Target with me.

4. I have a ready excuse for not participating in boring school events for my typical kid.  No, I’m sorry, I can’t come to the popcorn and movie/ice cream social/bake sale/PTA meeting/art exhibit/math carnival/peeps show thingy tomorrow.  Conor-duty, you know.

3. My 12 year old with autism still snuggles with us and holds our hand.  Our typically developing nine year old, not so much. (According to Aidan, kissing me is torture. I’m sure, many nights, my husband would agree with him.)

2. When your kid only eats five foods, you don’t really have to worry about what to feed him for dinner.  Sweet potato, spaghetti sauce, rice, French fries and butter… the five food groups. Check out the food list...

1. You can fart in front of him and he won't blink an eye.  You don’t even have to blame it on the dog! But be forewarned... if it's an SBD, he'll ask, "What's that smell?” which can be bad for you if you're in public.

Please excuse me

Last night, I was visiting Conor on the unit, standing in the corner before we sat down for dinner.  His Clinical Assistant walked him down the long hall to help him wash his hands.

I watched Conor and his 1:1 walk back down the hall, holding hands.  He looked happy.  

The next thing I knew, another Clinical Assistant skipped up behind Conor, threw her arms around his neck, put her head down to his and gave him the biggest hug.  He beamed when he looked up and saw the pretty girl who had given him the unexpected affection. (Oh, how he loves the ladies, my little Romeo.)

It always amazes me when the people working with Conor demonstrate how much they like my guy.  I mean, I love him, I'm his mom after all.  But the people who see Conor's behavior at its worst?  Even his psychiatrist, after watching Conor tantrum endlessly on the unit at Sheppard Pratt, told me how lovable Conor is. 

Lovable, you say? Did you not just see the tantrum?

Maybe it's because I focus more on the poor behavior, not the nice behavior. But the nice behavior is quiet, warm, and cuddly, it doesn't call attention to itself.  The bad behavior is loud, chaotic, demands your attention and my shame.

I can hear my mother's voice now.  "You focus too much on the negative, Alisa.  You need to look at the positive."

Easy to say, not so easy to do when the negative is so huge and overwhelming. Difficult.

You know, I could make a list thirty deep about the wonderful things about my child.  He’s funny.  He’s affectionate.  He likes to bounce balls and swims like a fish.  His taste in music is awesome. He plays Trouble and Uno, and stands still when I put on the sunscreen.  (His typical brother, not so quiet with the sunscreen application I have to say.)

I just can't help myself, though. Maybe it’s a character defect.  Maybe it’s just stress or my anxiety. Maybe it's because Conor isn't my job... he's my son.  It hurts me to see him act this way. There's no emotional distance.

And, at the end of the day, even with that list of thirty wonderful things about Conor, it’s the list of challenges that simply consume me.  I’m not up all night worrying about all the wonderful things.  I’m thinking about these tantrums.

Because when he’s grown, when he’s 160lbs and 5”8’, when he’s no longer guaranteed an educational setting because he’s 21, when Jim and I are old and feeble and infirm, it’s these behaviors (or the lack of them) that will determine if he’ll ever hold a job, if he can live in a less restrictive setting or even at home with us, if he can travel or go to the grocery store.

If we can't control these behaviors, his world will get smaller and smaller and smaller.  That's not what I want for him.

So I hope that you can forgive me, my focus on the negative with my son.  

Because if I can’t help him learn how to behave appropriately, I would feel as if I failed him. And all the affection, all the great taste in music, all the sunscreen application in the world might not help him in the end.

I’d like to think I’m not focusing on the negative.  I tell myself that I’m trying to focus on his future. 

But, then again, maybe I’m just making excuses for myself.