Some S&M, One Menage A Trois, and Shades Of Grey

Last night, as I walked wearily in the front door after taking my typical 10 year-old to his drum lesson, I ran smack into Paisley and Conor playing badminton in our front hall. (Paisley is his 1:1 at home on Tuesdays.)

As soon as she saw me, she got a wry smile on her face and stopped batting the birdie back and forth.  Conor danced off; he was listening to his portable CD player at the same time.

She was trying hard not to chuckle.

"Um, Conor's had a lot of interesting questions tonight," she reported, bobbing her head.  "He wanted to know what S&M stood for."

My eyebrows shot up.

"I asked him what he meant, where he heard that" she continued, her eyes dancing.  "He told me--'Rihanna'."

Oh, for the love of Pete, I thought as I flung my purse onto the table.

"I told him it stood for science and math," she elaborated.  "I don't think he quite bought it.  Jim told him soup and macaroni."

"Why?" Conor had asked her, confused by the response.  "Why does S&M stand for science and math?"

"Because some people think they're fun," she replied, not really knowing what to say.  "Science and math--fun!"(You gotta give it to Paisley, she tries.)

Look, Rihanna, I'm sure your mom's real proud of your hit song S&M (it's quite a catchy little ditty) but how in the name of Mary am I supposed to explain this to Conor?  I've already had to navigate the land mine of Lovely Lady Lumps, for Pete's sake. I haven't even talked to him about straight-up vanilla sex, much less the trickier aspects of the whole whatever-floats-your-boat thing.

Forget that the song's probably a deconstruction of the media's fascination with some of Rihanna's relationships with less savory types (at least that's what the video suggests to me). I have no desire to write a dissertation on the topic.  What I want to know is this...

How do I explain this to my son who is chronologically a teenager but, in many aspects, is much younger than his 10 year-old brother? My son--he can't tell me what he did during the day but can find anything he wants on the computer, on the iTunes store?

Le sigh.

Already, I've danced around (metaphorically and literally) Katy Perry's mention of a ménage à trois in her smash Last Friday Night. (My kids don't speak French, though, so I think I'm golden on that one. Fantastique!)

It's the age old rock 'n roll push-me pull-me of one generation to the next, I suppose.  I'm sure my mom wasn't too fond of Madonna, although I certainly thought she was da bomb.  But please, I'd be happy to talk to Conor about what "virgin" means, but bondage?  Threesomes?  Seriously?

Um, no, that's what the Internet is for, sweetie. I'll move your computer into your room tout de suite.

(Of course, there was Madonna's 1992 coffee table book, SEX, which I'm sure never really graced anyone's coffee table. Maybe a night stand. A closet?)

Honestly, I don't know what criteria the FCC uses to judge these things.  Fun.'s song talks about "getting higher than the Empire state" and THAT's edited out (sometimes) but S&M and ménage à trios make the cut? Really?

I don't know about you, but I'd much rather talk to my son (typical or otherwise) about the dangers of heroin and methamphetamine than whips and chains.  (Which I only mention because she sings about them in the song, I swear.)

I haven't gotten past good-touch/bad-touch with Conor, how in the world am I supposed to explain S&M? To a kid who will, in reality, most likely, never have sex?

I know! Instead of reading to him from Charlotte's Web, or Stuart Little, or even The Lemonade Wars, I'll start him on 50 Shades of Grey.  That'll certainly be educational in more than one way.

Merveillieux!

Fill 'er Up!

Considering Conor is the one who usually drives me to drink with his challenging behavior, I think it's appropriate that he came with me to the liquor store today.

Yeah, baby, that's the one. Give it to Mama.

He chose a cart when we got into the store. I hope that this isn't a sign that he has a major tantrum planned in the near future.  (But if he does, I'm all stocked up.)

Toddlerville

Last Saturday, my typical 10 year-old son, Aidan, and I woke up in our discount-hotel beds at 4:30am and headed out for some fishing on a charter with my sister and our dad.  We could have woken up at 3:00am after sleeping in our own beds, but my husband was afraid we’d wake Conor up when we left.

 (Wimp.)

By 5:30am, we were boarding the boat, meeting the Captain and the Mate, and heading out to catch some bait fish so we could catch some rockfish.  Yeah, a double whammy of fishing.

We caught fish to catch this rockfish.
Not big, but big enough to count!  He'll be delicious.

At 7:30am, we were slipping pieces of cut-up worms on hooks and yanking spot fish out of the Chesapeake Bay like champs. Rockfish love those spot, at least that's what we were told.

At 7:30am, Conor was home having a tantrum (I found out later) because we didn’t have the Aunt Jemima Original Pancake Mix that he likes.  We only had the Aunt Jemima Original Pancake Mix Complete.

(Ok, my husband’s not such a wimp. He handled the tantrum by himself. You go, boy. That's hot.)

See, Aunt Jemima Original Pancake Mix needs Chef Conor to add an egg, 1 tablespoon of oil, and ¾ cup of milk to the mix. 

Acceptable.

The original.

 Aunt Jemima Original Pancake Mix Complete only needs the chef to add water.

Unacceptable, asshat.

There was no consoling him.  Jim offered to go to the grocery store with him when it opened at 8am, but that was a nonstarter for Conor.  Nope.  Ker-fluey. Ka-boom. Ker-fluffle. 

Ka-shit-hit-the-fan.

And, after my husband told me what happened, I put my head in my hands and thought… I wish Conor would just stop acting like a toddler already. (In my defense, I had been up since 4:30am.)

You know, I’m not quite sure what having a child with autism is like for other parents, but for me, it is as if Conor is a perpetual toddler.  (A toddler who unlocks doors, works the microwave, and has started the hormonal joys of puberty. And, of course, makes pancakes, with supervision. But only the Original kind.)

I’m sure he won’t always be like this (although he’s been like this for years).  I’m sure when he’s 30 years old (and I’m still 29), he’ll be just like the wonderful teenager he was supposed to be when he was 15.  He does progress, he develops, just at a glacial and uneven pace.

Can I be confess something here? A deep, dark secret no mother must ever utter out loud?  

I don’t like toddlers that much. 

Honestly, I don’t know how that Duggar woman does it, with all the years of tears, and the tantrums, and the toileting, and the upsets.  (And that’s just Joe Bob.)  She and I have both been dealing with toddlers for years, except I’ve had just the two and she’s had 19.

Don’t get me wrong, I’m not tripping toddlers as they waddle down the sidewalk and shooting them with BB guns, but it’s not my favorite developmental stage.  Which makes it really tough when my 13 year-old acts like he’s 2 ½... all the time.

Take THAT, Aunt Jemima Complete.

He has tantrums, and often over the silliest things. Like pancakes. (Silly to me, of course. And anyone over the age of four.) He wants them cut into threes... so they add up to 9. And Conor wants to eat the same thing day after day. On non-breakable cups and plates.

He communicates at a rudimentary level. He doesn’t understand everything you say (although he can often say or read the words) and most of the time he can’t answer simple questions about his day. (In his defense, I think he understands more than he can ever say which is tough on many levels.)

I track his bowel movements to make sure he’s not constipated or having diarrhea. I remind him to go to the bathroom, and if I catch him having a bowel movement, I’m not above wiping his bum.

Conor picks his nose. In public. (What he does with it after that, I’m not even going to say. Use your imagination.)

Like Rush Limbaugh, he often yells just to hear the sound of his voice. I swear, he is part howler monkey.  (Did you know howler monkeys can be heard from up to 3 miles away?  Yeah, like that.)

Aw, my little howler monkey.

Conor skips. Like, skip, skip, skip-to-my-loo. (Which is different than skipping to the loo.)

And, like a majority of toddlers, Conor often doesn’t want to share. Mostly, he’s still on parallel play.

Although he regularly sleeps through the night (praise Buddha and big-cap pharmaceutical companies), weekends aren’t any different from weekdays and when he wakes in the middle of the night or very early in the morning, he still has to be closely supervised. I'd personally like to know when the sleeping-until-1pm comes into play.  I'm waiting for that fabulous part of teenager hood.

In a comfortable, appropriate setting (like our house or my parents' home), we can leave Conor unsupervised for a brief period of time.  But after five or ten minutes, one of us has to check in on what he's doing.  You know, to make sure he's not getting into something he shouldn't be.

Like a toddler, Conor has trouble waiting.  Trouble waiting in line. Trouble waiting for you to finish your meal in a restaurant.  Trouble waiting for an upcoming event.  Just... trouble waiting.  For anything.

Of course, on the flip side, like any toddler, he's playful, snuggly, affectionate, dances around to Justin Timberlake's SexyBack, and is asserting his independence in small but meaningful ways.

What?  What are you looking at? You don't you let your toddler listen to SexyBack? Really?  What's next, no more Black Eyed Peas with their Lovely Lady Lumps?  What kind of parent ARE you?

Stupid Flippin' Pancake

"What's wrong?" I asked my 10 year-old typical kid as he sat at the table, pouting at his plate of pancakes. "What's bothering you?"

"Nothing," Aidan replied sullenly, eyes downcast.

"Something's bothering you, c'mon, tell me," I needled.

"NOTHING!" he crowed.

"Ok, ok," I said, throwing my hands up as I followed Conor out of the kitchen.

From the other room, I heard Aidan muttering to my husband in the kitchen. "Pancakes murmur murmur flipping murmur Conor murmur murmur."

Oh my God, seriously? Is Aidan seriously pouting because Conor flipped Aidan's pancake over on the skillet, and Aidan didn't get to do it himself?

Is he upset over, literally, a flippin' pancake? 

Sigh

Growing up with three sisters, I remember vividly the multiple indignities suffered upon me by my siblings. Too numerable to recount here, although I distinctly remember my older sister looking at me a lot. At least, that's what I told my mom.

She's looking at me, Mom!! 

 I told her NOT to, but she's looking at me!"

I know, really, the nerve of my sisters to actually look at me.

My husband and I try to explain to Aidan that typical brothers can be pains in the asses too, that Conor doesn't just torture him because he has autism. He also tortures Aidan because, well, he's his older brother. And that's what siblings do.

(Although Aidan doesn’t have to complain about Conor looking at him, ‘cause his eye contact sucks.

Bwa ha ha ha ha ha! Sorry, bad autism joke, couldn’t help myself.)

Of course, I didn’t have two rooms in my childhood home with locks on them that I could use as "safe rooms" when my sibling had a magical meltdown. Aidan does. (They lock from the inside and one has a Wii in it to amuse him during a Conor crisis.)

And my parents weren’t powerless to address certain behaviors. I've been grounded more times than I can count, have had my mouth washed out with soap (blech), and made to eat green vegetables!  Vegetables!

(Although, I suppose, I probably accused them of doing nothing to stop the looking at me!)

Quite honestly, at this point, if Conor flips his brother’s pancake or steals Aidan's basketball or makes it impossible for Aidan to have a friend over one afternoon, we may simply have to shrug our shoulders and move forward. Is the act important enough to risk a grand mal tantrum for?   If yes, then confront and deal.  If not, just accept and move on. Priorities, I suppose.

It’s not that these things aren’t important. They are. It’s just that, in the end, the entire family has to dance around Conor’s disability. We all have to make concessions accommodations to it. Even Aidan.  And that's got to be hard.

So I understand Aidan’s frustration. Personally, I wish Aidan had to deal with his brother calling him a ball sac, bogarting his Halloween candy, and giving him noogies than have a brother who tantrums on a whim, screeches odd things at people in public, and sucks up the majority of his parents' attention.  But hey, that's life with an older brother with autism.

But some of the time, it's just life with an older brother.

At least he doesn't have to deal with Conor looking at him all the time.  But the next time I catch my sister looking at me, I know what will show her what's what--

Take that. So there.

Just A Story

Tomorrow we introduce a new protocol to Conor, and I'm pretty nervous about it. Well, it's actually not totally new, but it's a change to an existing one and even a change makes me anxious.  (Of course, it's already well established that I'm an anxious person to begin with.)

Many times, Conor's tantrums begin with a lot of perseverations about an obsessive topic. (Perseveration is the "repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder". 


Yeah, organic disorder.  And all this time I thought organic was supposed to be good for you.)  

Anyhoo, you can be obsessive about something and not talk about it all the time... Conor.  
(Right?  Right? Right?) Denying the obsessive request or ignoring the perseveration can lead to tantrums, like the one he had on Saturday night.


No, Conor, for the last time, you can not burn a cd for Gabby Smutz at school!!


Ok, I didn't say it like that (obviously), but I did say no to the request and the firestorm ensued. (Yes, I know, supermoms, that this request sounds sweet and nice and generous, and oh, isn't that so cute that he has a girl he likes, he wants to make a mix tape for her but trust me.  We've been down that road before and it ain't pretty.  I'll explain why at a later time.)


So... I was supposed to put together this social story to explain the changes to Conor but I was too busy jet-setting about the planet with Brad and Angie and the explosion happened before I got my act together. (Designed by Carol Gray in 1991, social stories are short stories "written or tailored to an autistic individual to help them understand and behave appropriately in social situations." We use them to explain things that will happen as well, so technically, they're not truly "social stories." Just a story, I guess.)


I emailed our behaviorist about the tantrum amidst my tears, and she asked me back about the social story.  Oh, yeah.  That.  Um, I did kind of maybe sort of say I would put the social story together perhaps maybe?  You know, after Brad and Angie and the kids left?


Anyway, I finished the social story and I thought that I would share it with you.  It's pretty self-explanatory.  Conor will sit down with an adult and read through it once or twice a day to really cement the message.  It will be coupled with the new protocol and token board (taking out the old iTouch-specific token board).


This, of course, does not change the behavior protocol and token boards that specifically address the aggressive and self-injurious behavior. Oh, good golly, no, wouldn't want to mess with that, no sir.


Sorry, you might want to get your reading glasses out.  Couldn't make them any bigger with my cheap scanner. Conor's behaviorist on the NBU created a template for the stories, and I just change the text and the characters.

Cheater, Cheater, Pumpkin Eater

I remember the first time Conor lied to me like it was yesterday. 

For those that don’t know, it’s a common misperception that people with autism can not tell lies.  Some sort of horse hockey linked to their tendency to be literal, I suppose.

Not my guy.  He’ll look you right in the eye and he’ll lie.

“Conor, did you write on the wall?”

“No.”

C’mon, Conor, who else would write the name of his current girl obsession on the wall?  It says “Vera” right there. Fess up.

“Conor, just tell me the truth, did you write that on the wall?”

“No.”  You can tell, though.  He looks you in the eye but he wrings his hands.

The evidence to convict

Over the years, Conor has improved on his lying technique, but not by much.  Now, everything’s an “accident”.

“Did you just throw that book, Conor? I heard you throw it.”

“It was an accident!” he declares.  “I’m on Level 3.”

Ok, now, how does a book get thrown by accident?  Honestly, Conor, did you throw that book?  “No!  It was an accident.”

Wait, it gets better.  Now, he tells on himself, even as he’s lying about it. 

I’ll be standing at the stove cooking dinner while helping Aidan with his homework (I am woman, see me multi-task), and he’ll come to the kitchen door and blurt out…”Conor’s on Level 3, it was an accident.”  And then hold his hand up for a high-five.  What?  What now?

Conor’s immune to misdeeds if we don’t witness them ourselves; he doesn’t know we can’t touch him if he confesses.  But we don’t tell him that.

So when the behavioral therapist at Kennedy Krieger asked me if Conor cheated, I swore that no, he doesn’t cheat.  He lies, oh boy, can my boy lie to you but cheating?  Nah, he follows the rules. (We’re talking about tweaking his behavioral protocol and it’s important to know if he’ll cheat or religiously follow the rules.)

So when we caught Conor downloading an entire album of Chely Wright songs on his iPad behind our backs and without permission on a day when he knows that it’s not allowed, I was horrified and incensed.

Ok, not really.  I was amazed and bemused that he figured out how to do this.  I guess if you enter a password on iTunes to download an application on your iPad (which his father DID approve), you can go back into iTunes and purchase whatever your heart desires without re-entering the password.

The old bait-and-switch.  Yeah, we're suckers.

"Daddy, want Conor to have some downtime?  Want Daddy to leave the room?"  Tricky-dicky.

(BTW, he DID get the ten bucks taken out of his allowance next week. There was a consequence. Unfortunately, I think it's overshadowed by the sheer joy of listening to the bootlegged songs.)

That smarty pants.  That lyin’, cheatin’, scheming smarty-pants played us like fools in a bad country and western song. You gotta give him credit for that.




I'm not a big country music fan, but when I was researching videos to go with this post, I stumbled upon this one. Fun!

Pretty Woman, Don't Walk On By

Tomorrow, my oldest becomes a teenager.  He’s stinky, has jock itch, small acne blooms on his nose, dandruff, and roaming hands.  

So attractive, I know, this road to becoming a man.

Despite having a communication disorder that results in large deficits in his social skills, I have complete confidence that my boy will have an easy time meeting new lady friends.  After all, he’s been putting the moves on his female therapists for years, and he’s got his rap DOWN.

And he's not shy.  Oh no, not my Conor.

“HimynameisConorwhatsyourname?” he splurts out quickly at pretty women he spies passing by on the street.  (Overwhelmingly, they are exceedingly nice. Despite his progress over the years, you can easily tell that he’s not typical.)

Quizzically, they look at me.  Inwardly, I sigh. I’m used to being Conor’s interpreter. I repeat his question.

“Oh, my name is Andrea,” she might say with a smile.

“HowoldisAndrea?” he’ll quickly retort, pointing his finger at her.

“I’m great!”  Big smile.  No, I clarify, he wants to know how old you are.  He’s hard to understand, in his quick falsetto, fast as machine gun fire.

“WhensAndreasbirthday?” he’ll say, pointing at her again.

“June 14^th!”  Gosh, this gal caught onto Conorese quickly.

“Ok, Conor,” I’ll say.  “Let’s get going!”  Big, fake smile.

“Andreadoyouhaveapet?” he continues. Oh Lord, take me now.

“I have a dog!” she replies.

“Andreawhatsyourdogsname?” he asks, still jabbing his finger at her.  Now I can really feel the embarrassment coming on.  How much longer do we have to talk to this complete stranger, nice as she is?

“Peaches,” she smiles.

Conor looks away.  He’s lost interest in the conversation and, thankfully, mercifully, he’s ready to move on.

Thank you, I mouth at the pretty woman.  She looks like a mom.  In any case, mom or not, she gets it.

If accosting unknown pretty women on the street doesn’t work, Conor has his back-up plan.  Today, I saw him sneak a kiss on the arm of the buxom behavioral therapist at the Kennedy Krieger Institute. 

Dude, whoa, slow down, you just met this girl last week! How about buying her dinner, or at least a drink first?


Look at how young Bruce Springsteen is in this video!

Ain't No Other Man

Tonight is my 15^th wedding anniversary.

On our wedding day, Jim’s cheeks were rather flushed.  At first, he blamed it on the pick-up basketball game he participated in that morning with his buddies.  (One opponent was an ex-Towson University women’s varsity basketball forward who kicked everyone’s butt.  I just had to mention that.)

Then he said he was under the weather, a little sick.  Yeah, I replied, laughing at him.  Sick with fear.  And up the aisle we went.

Don't we look great? I thought the red added a little "punch".
I've been doing pilates; can you tell?

Little did we realize what we would have to navigate through, together.  It’s been quite the decade and a half.  Eventful in a bittersweet way that I could never fathom. All I can say is that I’m glad I married the funniest man I met because we’ve certainly needed some humor to deal with all the drama and sadness and stress over the past decade.

So… I’ve been racking my puny, addled brain for weeks trying to figure out what gift to give him. 

What do you give the man who has stuck by your side through the grief of an autism diagnosis, the grueling years of 1:1 in-home instruction and behavioral therapy, dealt with tantrums and upsets, who drove his family countless miles and hours to doctors and specialists and more doctors and more specialists? (Don’t forget the conferences I “suggested” we attend.)

What do you get the guy who sacrificed his career and ambition to focus on his oldest son’s education and therapy? Who takes his fair share of sleep-deprived nights and almost single-handedly toilet trained a child with autism with some pretty serious bowel issues?  A man who taught his son with autism to sit appropriately in a restaurant and have a meal, to fly on an airplane, to ride on a boat, ride a bike, swim like a fish, and refused to sit in the house all day with Conor even though the stress of taking him into the community often drove me to tears.

And that's not the half of it.

The 15^th wedding anniversary present is crystal.  I know, seriously, crystal?  We get THIS FAR, through ALL THIS, and I’m supposed to buy him a Waterford vase?

Shyeah, AS IF. 

No, instead I bought one of those “couples” gifts, of course. Something we'd both get a kick out of.

What else? Lingerie. 

Lingerie is, after all, the gift that keeps on giving. (Hopefully, more than once. ;-)

Win-win, I think.

Forgive Me, Father, For I Have Not Written

It’s been thirteen days since my last post.  (I feel like I’m in a confessional. Go say ten Hail Marys, five Our Fathers, three rosaries, and repent.)

Like any sinner, I have myriad excuses for not writing on my blog.  I had to travel to a funeral.  Another in-home aid tendered her resignation.  I had to yell at twenty different people four times each so I could get a neurology appointment for my son in this century.  My sister got sick and I had to babysit her beautiful children. Conor had a tantrum.

You know, life.

To be honest, I’ve been writing my annual fundraising letter for a local autism nonprofit, Pathfinders for Autism.  I’m a board member, thank you. (Head bob here.) When I was President of the Board, I used to don a tiara but I had to give that up after my two-year term ended. Now I curtsey to the current president since I’m just a common board member. (B.J., our current president, has declined to wear the tiara, I have no idea why.  It’s ♪ fabulous ♪♪.)

Boy, I tell ya, nothing makes your friends run away faster when they see you coming than a good ol’ ask for their money.  It’s not awkward, no, not at all.

It’s ok. I’ve gotten comfortable asking people for their money; I used to raise money for a different nonprofit to earn a paycheck.  It’s not for me personally, I say to myself. It was my Director of Development mantra. (Please pay no attention to the tiara; it was a gift. From myself.)

It’s for a good cause.  You’ve had a good year, it’s time to spread the wealth a little. Generate some good kharma. Give back to your community. We’re a 501c3 you know, April 15^th is right around the corner!

People are amazingly generous. Really, they are.

I thought I’d share the letter with you, as a sort of reminder of the mitzvah of tzedakah.  That, and I think it’s a really great letter about Conor's year and pitching a really great nonprofit that strives to improve the lives of individuals with autism every day. (If I do say so myself.) Pathfinders has a great free resource center.


So here goes--

Dear Friend:

On New Year’s Day, Conor popped out of bed at 6 am, shouting—“It's a new morning! It's a new year!”  Then he slammed open the door in his bedroom, setting off the big bell attached to the doorknob. (I had been lying in bed with him since he actually woke up much earlier but I wanted him to stay quiet.  So much for that!)

Yes, it is a new year, Conor.  And your father and I are hopeful that it will be a calmer one. (I know I have MY fingers crossed!)

Despite having one hospitalization under his belt in late 2010, Conor’s behavior continued to be challenging throughout the first half of 2011.  So, after another short-term hospitalization at Sheppard Pratt in mid-June, we admitted Conor to the Kennedy Krieger Institute’s NeuroBehavioral Unit.

The NBU treats severe problem behavior displayed by individuals with autism and intellectual disabilities.  You can receive outpatient services in your home or actually have your child admitted into the hospital for a residential stay. Treatment combines behavioral approaches with medical ones.  The professionals at Kennedy recommended inpatient due to the intensity and severity of Conor’s monumental tantrums.

Deciding to place your disabled child in a locked hospital ward due to his behavior is frightening and sad. It was emotionally difficult, and heartbreaking, mostly because Conor didn’t enjoy being there. And he wasn’t taking it quietly! But he was getting the help he needed. Finally.

Kennedy discharged him from the unit just before Halloween, a 4-month stay. He’s made a remarkable improvement, with Kennedy reaching their goal of an 80% reduction in behaviors.  Of course, this means that he continues to have truly breathtaking tantrums, but the frequency has diminished significantly and our children are able to be in the same room together. 

We eat dinner as a family again, and walk the dog together.  We’ve even taken a short trip to visit Jim’s family in Connecticut.  Life with Conor continues to be a challenge (I suppose it always will be) and there are always two people in the house with him in case of a tantrum, but, slowly, we are getting back to a routine.

Having a child with autism is extremely challenging, to say the least.  Coping with a developmentally disabled child who has extreme behavioral problems as well, you become so isolated and alone.

As you know, every year I ask friends and family to support an organization that helps families like ours—families that struggle to care for their loved ones with autism. While we were fortunate that Conor’s school was able to shepherd us through much of this difficult process, many families do not have that to lean on.  And so they call the Pathfinders for Autism Resource Center and talk to one of our staff members.  They ask questions, talk about current challenges, and work with our families to find a way to get the help and support they need.  It’s invaluable.

I know, I volunteer there and I have picked the brains of Trish and Shelly many, many times over the years.  (I sound like I’m from the Hair Club for Men. I’m not just the owner; I’m a customer too!)  We’ve recently renovated our web site so that parents can see what they need to do for their loved one by their age.  So very important as our children get older, their needs evolve, and services get scarcer.

So, here goes—please help support our mission of improving the lives of individuals with autism by giving to our 11th Annual Pathfinders for Autism Golf Tournament & Awards Dinner on Monday, May 14, 2012. It’s our biggest fundraiser of the year and one of the best charity tournaments around. We hope you can help. No amount is too small; no gift is too large. (I couldn’t resist, sorry.)

A $300 donation  (by April 1) gives you a tee sign at the Tournament.  Everyone gets recognition in the program book, of course. We have foursomes available if you’re interested in teeing off with the group.  It’s always a fun time! Let me know; I’m at mary_alisa_rock@yahoo.com.

Sincerely,

Make checks payable to:

Pathfinders for Autism

303 International Circle, Suite 110

Hunt Valley, Maryland 21030

Make sure you put my name and “Golf 2012” on the memo line so we can accurately track your donation. (Helps me look good at the board meetings.)

You can donate online at www.pathfindersforautism.org. Click on the Donate button. Designate Golf 2012 or put our names in the Dedication field!

Conor channels his inner chimp

I now have proof that humans have descended from apes.  It’s Conor.  He’s unleashed his inner chimpanzee, and I have to say, it’s really, totally, horribly annoying.

Conor’s never been a quiet kid.  He’s always engaged in a lot of nonsensical noises, generally in a loud voice.  But this… this new noise takes it to a whole other level.

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

Normally, I don’t care if he makes noises.  It helps me keep track of what he’s doing.  (Too quiet is actually a bad sign.  Quiet means he’s up to no good.)

We actually used to encourage him to go into the depths of our unfinished, dirty basement to whoop it up.  He’d ride around the dirt floor on his scooter, sing bastardized versions of The Lion King songs at the top of his lungs in a nice falsetto, and eat the scraps we’d throw down to him every night.  (That’s a joke, by the way. The scraps part.)

But this new chimpanzee noise, it’s driving me crazy! He’s literally doing it at the top of his lungs.

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

And in the shower too, for good measure.  He gets phenomenal reverb in there and jumps up and down for good measure.  I keep expecting him to throw feces at the glass like the chimps at the zoo.  (I kid, I kid you. It’s a joke, the feces part.)

(Yes, Mom, I know jumping in the shower is bad; he could fall.  We’re working on it.)

The worst--when he adds his new favorite activity to the chimp screams.  Bouncing the ball.  In the hall, not the shower.

Any ball, he’ll bounce.  Watching him try to bounce the golf balls off the walls led me to ban them in the house. We have windows and mirrors and pictures and things with glass, after all.

He’s particularly fond of those medium-sized plastic bouncy balls from Target (they make a nice “ping!”), but he also likes tennis balls and Sky balls.  Sounds innocuous enough, the ball bouncing.  Until he’s on his twentieth minute of bouncing on the wood floor, that is.

THWACK THWACK THWACK

 THWACK THWACK THWACK

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

 THWACK THWACK THWACK

THWACK THWACK THWACK

 Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

AAAAAAAAAAAHHHHHHHHHHHH!

That last one, that was me pulling out my hair.

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.

“CONOR, YOU’RE DOING GREAT, YOU’RE ON LEVEL THREE!!! WAY TO GO BUDDY!  (insert high five)  LET’S GO PICK AN ACTIVITY OUT OF THE BOX THAT’S SOOOOO MUCH FUN TO DO, ALL RIGHT!” (fake smile)

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.


"CONOR, COME SET THE TABLE AND THEN YOU CAN BOUNCE THE BALL FOR TEN MINUTES. AWESOME JOB, KID, AWESOME!!!!! YOU ROCK!!!!!!!!"

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.