My own Big Chill

On Friday, I leave for my 20^th college reunion.  You can say it...I’m old. 

I’ve been obsessing over this for the last month. I’ve got the requisite hair cut (but opted not to touch up my roots; big mistake), have the appointment for the mani/pedi, booked the hotel room, confirmed that my roommates will be there, and only need to buy a pair of shoes before I am ready to go. I have to find the pair that will make my outfit.

Reunions are all about catching up and I’m looking forward to hearing what everyone’s been doing with their lives.  But I’m starting to get anxious about talking to people about my life.

For the last ten years, I have been living and breathing autism.  Oh, I’ve had a job for a little while, and taken a few nice trips, but all in all, my husband and I and Aidan have been coping with Conor’s autism non-stop.

But, I am determined. I am SO not going to be that boring woman who can only talk about one depressing topic ad nauseam.  And crying, I am NOT going to cry. (Three years of therapy, and I still cry when I talk about my son’s regression. Wimp.)

To reinforce my determination, I have written a little mantra to repeat to myself several times a day.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

Break out the Doublemint Twins

In Mexico, I hear, there is a gum version of Viagra.  Perhaps it is for men who want longer lasting... flavor? (Turns out, even guys who can't swallow very well like to get a little action once in a while.)

I'd love for Pfizer to take all this innovation, all this research and development, and put it to use on autism.

I mean, I know erections must be simple, relatively speaking.  But we're talking brains here, right?  One's just a little smaller than the other.

Nice to meetcha

Right now, I'm not managing the relationships in my life very well.  And if I, a typical 41 year old housewife, am having trouble managing the relationships in my life, I wonder how Conor's ever going to be able to manage a relationship.

It's a conundrum.

I'll take three grasshopper sandwiches, to go please.

Our family vacations are my own personal version of Survivor.  You know, the popular TV show where the contestants have to eat live bugs, build their own shelter, overcome various challenges, and conspire with their mortal enemies to slowly pick off the competition one by one.

That’s nothing compared to have a “vacation” with Conor.  Hell, give me a cricket and I’ll eat it right now.  Right now.  

Stay balanced on a small perch or support my weight on a precarious roost for a long period of time in the hot sun?  Bring it, baby.

But ten days of Spring Break with my son?  I feel like faking a heart attack and going into the hospital just to get out of a few days of it.

I’ve often pondered why it’s just so hard to have him at home for an extended period of time.  I think I’ve boiled it down to three simple facts.

All this together time is killing me

At school, Conor has a 1:1 aide, Mr. Jakuta.  (We call him Jakuta the Barracuda. Don't worry, he's nice.  It just rhymes.)  He’s there to make sure Conor gets to where he needs to be, that he does his work, behaves appropriately and, most importantly, doesn’t hurt himself or anyone else.   At least, not seriously.

The need for constant 1:1 supervision doesn’t stop at school.  At home, vacation means no down time for me or my husband.

Like many families, school IS our respite program.  When Conor is at home, someone needs to be supervising him pretty much around the clock.  Oh, he sleeps through the night most nights, thanks to a bevy of medications, but then we have to do pesky things like clean the kitchen or pay bills.  Sometimes we even feed the dog.

I often equate my son with autism as being in a perpetual toddler state, behaviorally anyway.  You never know when he’s going to dump a cup of water on the floor, choke on a quarter that he’s put in his mouth, or throw a tantrum because something isn’t working. 

And, if you’re a parent, you know that toddlers need constant supervision. It’s exhausting. I don’t know how that Duggar woman does it.  (You know, the one with 19 kids.)

Just watch TV for a while, dammit

My son has very limited interests.  He’s not great at “hanging out”.  My friends who have typical kids are happy for a break from the school routine, glad the 101^st baseball game of the season is cancelled, and, gasp, actually miss their children when they’re in school.

My husband and I have to engage Conor in an activity pretty much the better part of each day.  He doesn’t really like to watch TV.  In fact, he hardly watches any TV at all.  He’ll play the Wii, surf our iPhones and his iTouch, and spend time on the computer.  But those activities don’t fill a rainy day.

He doesn’t like to play board games, but will play them if forced. (I mean, coerced.) Ok, that’s 15 minutes to play Star Wars Trouble and boom, he’s done.  Two games of War and he’s running away from the deck like it's a stinging insect.

We used to take Conor out in the community a lot.  We went to the mall, to museums, to department stores, to the playground, and the National Aquarium.  But since his behaviors have gotten so severe and unpredictable, community outings have become somewhat nerve wracking and restricted.

Ironically, I often find myself begging Conor please please can we just watch Shrek for an hour on this rainy day?  Because if I have to spend another hour trying to entertain him, I’m going to pull my hair out.

What will Conor do on Friday?

Individuals with autism need structure, support, predictability and consistency. It’s the autism mantra.   Unfortunately, it’s easy to say, not so easy to do.

We spent four days in Williamsburg, VA, with Conor on his Spring Break.  One day for travel, two days filled with riding roller coasters and puke-n-twirl rides, and one day for travel back to Baltimore. 

Conor’s first question on Wednesday morning?  “What will Conor do on Friday?” (We're still working on pronouns.)

I spend an inordinate amount of time planning, down to the minute sometimes, what we’re going to be doing on our vacations.  But pesky things like weather, electricity outages, illness, and even other people sometimes just get in the way.  It rarely goes as planned.  And that can result in heightened anxiety, incessant demands for the planned activity, and even aggressive behavior.

Seriously, Conor can handle the biggest roller coaster in the amusement park six times in a row, but a rainy day at the beach?  Forget it.

And I have to say, I would love to have some vacation days where we don’t have anything planned.  We can do nothing, or everything, or something… but just not have a plan.  Well, spontaneity went out the window with Conor’s regression, I guess.

So grab that grasshopper.  I’ve got the flour and the oil in the deep fryer ready to go.  Can’t wait to gobble them up.  I’ve even uncorked an appropriate Chardonnay to pair with them, along with a hearty cheese and some arugula.

But, please, let Conor have school tomorrow.

Oh brother, how art thou?

My husband and I took Conor to Busch Gardens in Williamsburg, VA, for his Spring Break.  He and his brother go to different schools, and thus, have different schedules. 

So we sent Aidan (our typical child) to my Mom and Dad’s for a few days and nights. They made sure he slept, bathed, got to school, and got the payment in for the class picture and the dollar for the Used Book swap.

Tonight, my Dad brought Aidan home.  I missed Aidan so much.  He’s my red headed, freckled face, blue eyed wonder full of what makes almost-nine-year-old boys so wonderful.  He’s the love of my life. 

(Until he turns thirteen, that is, at which point I’m sure I’ll give him away to the first gypsy who offers to take him.) Nine years old is my favorite age. They still need you, but they don’t need you.

We feed Conor dinner pretty early and by himself.  It’s just easier.  My husband inhales his food in about 3 minutes.  (He always has.) And then he supervises Conor while Aidan and I finish our meal together.

As Aidan and I were eating dinner together, he started crying because his brother was at the computer, just screaming.  Not screaming in an angry kind of way.  More like screaming in an “I-like-the-sound-of my voice” kind of way.  But still, Aidan said it made his stomach hurt and his chest feel all squiggly down to his stomach. I have to agree; it’s quite jarring.

Who can blame him?  After four days with two retired, doting grandparents and an 11 year old golden retriever/lab mix who sleeps for a living, it’s got to be a jolt to come back to a loud, chaotic, unpredictable environment with a brother with autism.

“You don’t know what it’s like to have a brother with autism,” he cried to me over his grilled chicken, noodles, and yogurt tube. 

“I know what it’s like to be a parent of child with autism,” I replied.

 “Yes,” he said.  “But it’s not the same as having a brother with autism.”

I guess it’s not.  I’m an adult after all.  I took on the responsibility of having a child, no guarantees, when I was almost thirty years old. It’s not the same as being an 8 (almost 9) year old with a brother with autism.

I mean, Aidan still cries if he can’t go over his new (I swear he’s my best friend even though I just met him) friends’ house.  I can’t imagine what it must be like for him to cope with a brother who struggles daily with communicating, has really weird behavior, and targets him with aggression for no reason at all.

I hope that it will get easier for him as he gets older.  Maybe it will get harder as he becomes more self-conscious.  I don’t know.  All I know is, he’s right.  It’s tough to have a brother with autism.

Dull women have clean houses, or so I'm told.

Look at this kitchen. It's so clean. And neat. It calms me just to stare at it. This couple has 4 children and a house in England that is a bajillion square feet on 23 acres of land. They own a successful I.T. company. This is code for: they have more money than god but not Bill Gates.

They converted the ballroom into a Lego room. What kid with autism wouldn't love a room full of Legos? (Well, my kid isn't into Legos, but this toy is Legend amongst many in the autism community.)

Five architects later, they have the house of their dream. (I know, five architects, it's so tough to find great help these days.)

Yes, I know they picked up the kids toys for the article profiling their English estate in The New York Times Style Magazine Design Spring April 3, 2011 issue. I'm sure they have dishes with 3 day old cheese crusted on them in the sink, just like me.

This is my son's room.

You can see just by this one picture how cluttered his bedroom is.  You might think he wouldn't notice if one tiny thing was removed, but oh believe me, he notices.

(I'm the Orioles fan, in case you're wondering.  My husband loves the Red Sox.)

I always wonder...  is Conor's mind as cluttered as his bedroom?

No more pencils, no more books, no more teacher’s dirty looks

It took me five grueling years to get my Masters in Business Administration.  Five long years of night school, of charging thousands of dollars each semester on my credit card to pay tuition to Johns Hopkins University. 

Five long years of working, studying, working, studying. Finance practically killed me, don’t get me started on Statistics.  

(There’s a reason Statistics sounds like Sadistic.  But I digress.)

 During those same five years, I moved from Manhattan to just outside Washington D.C., took a new job, had two direct reports quit while simultaneously trying to manage an acquisition, planned a wedding and got married, moved again, and had a baby.  Finally, I graduated in May 2000!

Such a waste of time. 

Seriously, I have a specialty in Strategic Planning and what I’ve discovered is… you can’t strategic plan your way through autism.

Here are the degrees that I should have gotten to help me as a parent of a child with autism.

Medical degree

I’m tired of reading the Journal of Autism and Developmental Disabilities and understanding the words “is”, “the”, “an”, and “autism”.  Seriously, it would take me 15 minutes to get through one paragraph.  Please, lord, give me a SWOT analysis and I’ll buzz right through that thing.  “High levels of homocysteine and low serum paraoxonase 1 arylesterase activity in children with autism”… not so much.

Oh believe me, I’ve tried. I tried to get my brother-in-law to explain medical studies to me, in plain language.  He’s a neurologist, and his advice was to simply stop reading the studies.  Yeah, right, Pete, like that’s gonna happen.  Could you please just break it down for me?

I’m tired of arguing with doctors about what medical tests to order to figure out why his gut hurts, and why he always has a funny rash on his arms, and what is making him so obsessive, and I know that something’s bothering him, I just know it.  A mom knows these things.

And I have my theories, you know, because I’m always reading those pesky Journals and medical studies.

Special Education degree

I have a sneaking suspicion that schools must pass along some secret in class to their Special Education teachers because who can muddle through a 36 page Individualized Education Plan and really address all those goals and objectives?!

Conor will pick his nose only twice out of ten tries with 80% accuracy.  Check!

Yes, my son’s IEP is 36 pages long.  Twenty of those pages are his Functional Behavioral Analysis and Behavior Intervention Plan, I swear.   Special Ed folks actually call this the FBA/BIP or--say it out loud with me--the Fa-Bib-Ip.  I am not joking. Fa-Bib-Ip.

When Conor is in crisis and he bites his hand, do not respond.  If he starts gouging at his eyes, please respond quite rapidly.  Check!

In all seriousness, teaching Conor has always been a mystery to me.  Oh, we used the Picture Exchange Communication System (PECS), and social stories and video modeling, discrete trial training, pivotal response, blah de blah de blah. 

But I never feel like I really do a good job explaining things to him.  It’s that damn communication disorder.

Law Degree

We’ve recently had to enlist the aid of an attorney and an advocate to wrangle with our local school district about my son’s placement.  I felt I should be prepared.

I mean, it’s not enough for me to pay someone $350 an hour to make sure they know this stuff.  I have to read books and watch how-to DVDs about it myself too.  (Hey, I watched Erin Brockovich, you know. My boobs might be smaller but I can still be helpful.)

But I think going to law school might help me understand regulations such as—

“(f) Rule of construction. Notwithstanding any other individual right of action that a parent or student may maintain under this part, nothing in this part shall be construed to create a right of action on behalf of an individual student or class of students for the failure of a particular SEA or LEA employee to be highly qualified, or to prevent a parent from filing a complaint under Sections 300.151 through 300.153 about staff qualifications with the SEA as provided for under this part.”

Huh?

When I read this, the voice in my head sounds like the adults in the Peanuts video.  Wah wah wah wah wah wah wah.

I think law school must teach you how to drink the right amount of coffee so that your brain doesn’t painfully twist around in your head reading this kind of language.

In the end, I just don’t have the time and patience to earn another degree.  I know parents who do just that, however.  They go back and get a degree so that they can help their child and their family progress. 

Personally, I just talk to whoever will listen about my son, his challenges, our struggles and our hopes.  I visit doctors, psychologists, teachers, experts, and parents to see what everyone is doing and trying.  I go to conferences and seminars on topics that pertain to what we’re coping with. 

At business school, we called this “networking”.   To me, it’s just being a mom.

Don't be such a baby.

I recently discovered a blog about parenting a child with autism, thanks to an old friend of mine, and I really enjoy it.  It's upbeat, positive, a loving portrait of living with two children on the more severe end of the spectrum.  

She doesn't candy coat it, but she's focusing on the positive aspects of the challenges in her life.  It's not the nail biting, soul searching, angst-ridden musings of a neurotic that mine is turning about to be.

One day I was reading her blog, and smiled at something her kids did.  I scrolled down to read the comments. Comments can be so insightful, supportive or even controversial.

One comment said something like, "I love your blog, it's so positive.  You're not whining like so many other people."

Whining.  Whining?  Whining.

This comment blew. my. mind. 

Would the commenter have told an Iraq war veteran with posttraumatic stress disorder to stop whining?  Suck it up, man, and grow some balls already?

Do you tell the parent of a child who has died to just get over it?  To stop obsessing about it, and to move on already, we're sick of your crying?

Of course not.  Look, autism changes your life, irrevocably.  Inevitably.  It can change it positively or negatively. Most times, both.  It's never what you expect. And each person’s perception and experience of it is different and unique. 

  

Communicating the hardships of raising a child with autism isn't whining, dear commenter.  It's important that you recognize the challenges of raising a child with autism so that when someone asks you for help, you'll know why. 

So when you're asked to support legislation and tax-funded services to help these families, you'll know why. 

So when an individual with autism comes to you for a job interview, you’ll be understanding and patient.

It’s important to be aware, so when a parent of a child with autism has to leave work early because the school called (again) about yet another crisis, you’ll be sympathetic and not resentful.

So when you meet someone with autism who is behaving oddly or even aggressively, you'll know why.

And hopefully once you know why, you’ll care enough to try to do something to help.

Don't bite the hand that feeds you.

Conor had a tough week last week.  Here's the nurse report.  (Sorry for the fuzziness; my printer/scanner/copier/fax sucks.) Full mouth dental imprint.  Yup, that's my guy, a hand biter.

OMG, what would the neighbors think?

When I was in high school, my mom caught my boyfriend and me steaming up the windows of his Volkswagen Scirocco behind the house.  It was only slightly mortifying. 

But what I remember most about the incident (other than how fun it was to steam up the windows) was her reaction.

She didn’t sit me down and talk to me about sex or birth control.  She didn’t question my morals or lecture me about the dangers of premarital lust.  Quite simply, all she said was--


 “What will the neighbors think?” 

As a parent of a child who often acts unpredictably, impulsively or, let’s be honest here, weirdly and sometimes aggressively, I often wonder what our neighbors think.  Or truthfully, what strangers think. (Our neighbors have actually been quite nice. Except that one horrible woman that no one on the block likes anyway.)

Oh, I’ve gotten past the embarrassment of him skipping around with his funny little dance and high-pitched squeals of happiness.  I’ve moved beyond the shame of him asking quite loudly to become a girl, and I’ve tolerated the remarks from the TSA employees about the green nail polish he had on his nails.  (I mean, really, who cares if he wears nail polish sometimes?  I like to think of him as going through a Goth phase.  How very punk, I tell myself.  How very Billie Joe Armstrong-ish.)

My face still gets red, though, when he picks his nose (and eats it, gross).  I get a hot flash when he sticks his hands down the back of his pants.  (OMG, please don’t have found anything back there!) I am BEYOND mortified when he starts tantrumming in public.  He’s twelve, for Pete’s sake.

I mean, can you imagine what those other parents must be thinking?  I know what I’d be thinking if I was watching this go down.  “Can’t that mom control her child?  What the hell is wrong with her? What’s wrong with him?”

Well, back in 1987 when my mom caught me making out with Troy in his car (he had a CAR!), I didn’t much care what the neighbors thought.  Today, I’d be fooling myself if I said that my son’s behavior often doesn’t embarrass me or make me cringe.   I just wish it was because I caught him out back steaming up the windows with his girlfriend.

Shhhh, here she comes!

I hate being That Mom.  You know the one.  The one always asking for favors. 

For me, usually, the favor is, can you watch Aidan for a couple of hours, get him off the bus and give him some dinner? Because Jim and I have to take Conor to the psychiatrist at 5pm.  Or… Jim’s got a meeting at 7pm, can you help me put the kids to bed?


This is my favorite… Our therapist called out sick today, can Aidan come over for awhile ‘cause Conor’s in a really bad mood?

I want to be the Mom Who Helps Out, not the Mom Who Needs Help All The Time.

We have some great friends and family.  They’re always willing to help out if they can.  But it bothers me—a lot—that we can almost never reciprocate. 

C’mon moms and dads, that’s how it’s supposed to work, right?  You watch my kid for an hour, I watch your rugrat for an hour.  I drag your kid to squash lessons and you drag mine to baseball practice. Your kid tears up my yard with his cleats and my kid tracks mud all over your carpet.

Conor hates little kids, so babysitting my 2 year old niece while he’s home is tough. Forget her 5 month old brother.  God forbid a kid actually cries near him, the trauma.

Conor’s jealous of his little brother, so having Aidan’s friends come hang out for any length of time can be challenging.  I mean, who wants to invite a friend over but, by the way, we have to lock ourselves in my mom’s office to play the Wii so my crazy brother doesn’t attack us?

Don’t get me wrong.  Everyone is so totally nice to me, it’s embarrassing.  They make offers to help, and I believe they mean it.  Most of them, anyway. Even parents who barely know us have helped us out.

I just… I don’t know, I hate asking for help, I guess.  I hate needing the help.  It just makes me feel so… helpless.  So dependent.