Reading List, Sans Bibliography

Currently, I have 39 books in my somewhat cluttered office on, or about, autism.  Over the years, I have given several away, including Born On A Blue Day (a great memoir by a British man with Aspergers who does a remarkable job explaining his experiences, very helpful), two additional books on navigating IEPs, and Jenny McCarthy's Louder Than Words.  (Where DID those books go, I wonder?)

In the last year, I've also tossed three binders and their reams of paper from old Autism Research Institute and Autism Society of America conferences.  In a fit of de-cluttering, I figured the information was probably outdated anyway.

I've got one book totally dedicated to toilet-training (yes, it can be that hard), a book on special education law (we hired a lawyer, but still, I bet I could go all Erin Brockovich on those school people), a pre-teen fictional book about living with a sibling with autism, and a personal favorite, The Explosive Child.  (Needless to say, it didn't help with Conor, it's actually for typical kids. But it was interesting.)

I've purchased at least 6 books written by individuals on the spectrum.  One of my absolute favorites was Songs of the Gorilla Nation.  (I bought it used, honestly.  I didn't steal it from the library. Maybe that person stole it?) Simply fascinating, the relationship that this woman with Aspergers had with gorillas in a zoo that helped her come to terms with, and understand, her own disability.

Anyway, I also have a book edited by Nick Hornby, you know, of High Fidelity and Fever Pitch fame, who has a child with autism and donated funds from the sale of the book. I didn't include it in my little anthology here because none of the stories are about individuals with autism.

Oh!  I almost forgot that stupid book, the one about the dog in the night? The Curious Incident of the Dog In The Night-Time, that's right.  I felt like the author just made stuff up.  I mean, he writes fiction, of course he makes stuff up.  (I guess that's the point.)  But I didn't like the idea of someone who doesn't have autism trying to write as if he has autism. Or maybe I read it at a particularly low point in my life. Who knows?  Still, thumbs down.

  

Facing Autism is the very first book I read.  I actually purchased it before my son was diagnosed.  It's been years since I've read it, but it truly did help me face it. I have a certain affection for it.

It's funny, you know?  I read and I read and I read, and I go to conferences, and I talk to parents and doctors and specialists, and I still feel like I don't know what the hell I'm doing most of the time.  But I've always found solace in the written word, escapism in the fictional ones and hopefully some measure of enlightenment in the nonfiction.

I can't remember a time when I didn't love books.

Still, it's been a long time since I've bought a book on the topic. Sometimes experience is the best teacher, I suppose.  Now if I could only find the anthology on all things Conor.  Wouldn't that be nice?

I Eat Alone. Yeah, With Nobody Else

“I’m finished,” Conor states, gathering his dishes and standing up.

“What do you say?” I ask.  

“May I be excused?” he says robotically, sitting back down in his seat when I put my hand on his forearm. Then he pops up again when I nod my head.

“I’m finished, honey,” my husband says, rising from the table with his empty plate.  (He's a machine, my hubby; he eats wicked fast.) “I’ll watch Conor while you finish eating.”

“Mom, can I be excused?” Aidan quickly says.

“What? You didn’t eat your banana,” I reply firmly.

“There, I ate it, NOW can I go?” he mouths around the lump of banana in his mouth.

“Fine,” I sigh, looking around for a section of this morning’s New York Times.

Most nights, I eat alone.  Oh, I certainly don’t start out that way. Jim and I work pretty hard to get a dinner together for the four of us regularly.  After all, we can finally sit down at the dinner table together again and have a meal without Conor creating some sort of upset. (Well, most of the time.) I want to make the most of it.

In reality, I’m perplexed why I always wind up sitting alone at our distressed wooden table, the dog at my feet.  Am I one of those slow eaters?! No, that can’t be it.  Maybe? I never thought so.

I try to time it perfectly. 

Get the sweet potato cooked. Check.

Gather the nonpreferred foods together. (Part of Conor’s protocol from the NBU is that he has to eat 25 bites of a nonpreferred food before he gets his preferred meal.  He’s quite a restrictive eater.) Check.

Command Aidan to set the table. Check.

Pour water in glasses, giving Conor extra watered-down cranberry juice to wash down the unpreferred food. Check.

Husband takes care of tallying the number of bites Conor takes while I slap food on plates for the rest of us.  Check.

I sit and start to shovel food quickly into my mouth.

“Mom, can I have another pat of butter,” Conor says.  Sure, here you go.

“Mom, can I please have more juice,” Conor says.  Jump up and water more juice down.

“Mom, can I have more corn,” Conor says.  Sure, dash to the stove and get some more corn.

“Mom, may I have more sweet potato, please,” Conor asks.  Grab some from the counter.

“Mom, can I have a roll?” Conor says.  Ok, take mine and share it with your brother.

“Mom, can I have barbeque sauce?” Conor queries.  Sigh.  Sure, honey. Up I go.

Up, down, up, down, up, down… I must look like I’m on a pogo stick.  

Boing boing boing boing boing

I actually don’t put a ton of food on the table in the vain hope that if Conor doesn’t see it, he won’t want to eat or drink more of it.  (Still battling the bulge.)  Clearly, my strategy isn’t working, but I’m loathe to give up the effort. (If you have any suggestions, please post!)

I guess we could have a whole protocol to encourage staying at the table until everyone is finished eating (for both Conor AND Aidan) but, honestly?  We’re working on so many other things that it’s just not a priority. I’m happy right now to get through a meal without a behavior.

Sometimes I can bribe Aidan to stay with me if I offer him ice cream.  It’s effective, but I don’t want him to get into the habit of dessert every night.

And so, 9 times out of 10, I’m left at the dinner table to finish my meal in solitude.  That’s ok, though.  I catch up on the day’s news.  I enjoy the quiet.  I savor my meal.

Plus, it gives me a chance to drink alone as well.




Boy, George Thorogood has a big mouth, don't you think?!

Take Me Away

Who doesn't like a bubble bath?

Personally, I'd add a glass of wine to the bubbles and candle mix.

Like Water Off A Duck's Back

Yesterday morning, I was in my bedroom folding the laundry when the phone rang downstairs.  My husband grabbed it, and a few minutes later I heard a crash of glass in the kitchen sink.  

I didn’t think much of it.  After all, I routinely neglect the constant onslaught of dirty dishes in the sink to try to keep up with the waves of never-ending laundry.  

It was only 9:30 in the morning, so I had at least twelve hours to get to the dishes before I start hearing my mom’s voice in my head telling me to clean those dishes already.

Jim came up the steps to meet me with a half-eaten waffle in his hand.  (Luckily he hadn’t gotten to the butter and syrup quite yet.)

“The school just called,” he said incredulously. “They said Conor’s been in crisis since he got there and they think he needs to be hospitalized.”  Then he took a big bite of his waffle.

“Are you kidding me?” I replied, confused.  “It’s that bad?” I mean, this was only Conor’s second tantrum at school since being discharged from the NBU in late October.  Oh, he’s been happy to have them at home, of course, but school was going so well.  How could they recommend re-hospitalization already?

My husband stalked off to visit school, chewing his waffle furiously, while I headed out to babysit my sister’s two young kids as planned weeks ago.

I wish I could tell you that I handled this news with aplomb, that I was cool, calm.  Like water off a duck’s back, I brushed it aside as crazy talk.  Laid back, yeah, that’s me.  Cool as Cool Hand Luke.  Ice cubes for blood. Cool as a cucumber. 

Yeah, NOT.

I believe the clinical term for how I handled this situation emotionally is called

FREAKING OUT.

Half way to my sister’s house, the tears started.  I tried to not cry.  Didn’t matter, I can never stop the tears. They have a life of their own.  I knew in my heart that there was NO WAY Conor needed to go back into the hospital. I KNEW IT.  But still…

Just the mere thought that Conor could be that bad again made me call my friend for some support.  (Don’t lecture me; I have Bluetooth.)

I kept talking and struggling not to cry as I parked the car and dashed into the Giant.  (Hey, I can have an emotional meltdown and still pick up orange juice at the store on the way to my sister’s house to babysit while my disabled child is at school having a grand mal tantrum.  I multitask like nobody’s business. It’s part of my “laid back” persona. Yeah, as if.)

I could tell the people at Giant thought I was a kookie-bird.  Crazy lady crying and yelling into her iPhone in aisle seven!

“THE STRESS IS GOING TO KILL ME!” I lamented loudly to my friend, wiping my eyes furiously..  “Where are the fruit cups?” I whispered to the Giant guy in the neon yellow shirt.  “Aisle three, crazy lady,” he said.  (Ok, he didn’t call me crazy lady, but I could tell he was thinking it.)

Finally, I checked out (ignoring the cashier because, DUH, I’m on the PHONE) and hit the parking lot.  Thankfully, Amy talked me off the ledge, at least momentarily.  (Poor thing. She’s a saint. I’m one of those high maintenance friends.)

Switch over to the incoming call.  It’s my husband, calling with relief in his voice. “Someone at the school--probably new--panicked and Conor does not need to go back into the hospital,” he said. "He did have a tantrum, though."

Yeah, I know, I’m cool. I got it.  No worries. Whatever.

Like ice, baby.  Ice, ice, baby.

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!

The Bedpost

Grandma meets Conor for the first time

A couple years ago, my Grandma Middleton passed away.  She was 95, I think.  I do know that she was a warm, open, loving, generous, smart, and approachable grandmother.  She also loved adventure and travelled all over the world. She was a practicing Roman Catholic, and was always very smartly dressed.

But what I remember most about Grandma was her quick wit and robust sense of humor.

A long while ago, when I began thinking about having kids, I asked Grandma if she had always wanted a big family, or if it just happened that way.  (She had six kids. My mom was the fourth.)

I was pretty ambivalent about having children. At that time, I was thinking that if I was going to do this kid-thing, I might as well go whole-hog and have a bunch of them. (Not like that Duggar lady, though, that’s just craziness.)  Jim once mentioned something about the size of a basketball team, but I thought four was a much rounder number.

But maybe I didn’t want any kids.  Zero is a nice round number too.  I just didn’t know.

“Grandma,” I said, “did you plan on having so many kids, or did it just work out that way?” Remember… Catholic.

“Oh Lordy, no, child, seemed like every time Leo touched that bedpost I got pregnant,” she replied, with a roll of her eyes and a slight smile on her face.

I think I almost fell off my chair, I was laughing so hard.  It was so not what I expected. 

Of course, since then, I have learned that the best plans can go awry.  With an unexpected pregnancy (Conor), a miscarriage, one failed round of IVF, and another unexpected pregnancy (Aidan), things rarely go the way we think they will.  (That whole getting-pregnant saga would make up a post in itself.)

During Conor’s first hospitalization, the hospital’s psychiatrist asked us if we would have had more children had Conor not been diagnosed with autism.  I have no idea why he asked us this question, and Jim and I were so shell shocked from our current situation that we didn’t think to ask.

I’m not sure if I would have had a bigger family had Conor not had autism. Quite frankly, right now, I can’t quite manage two kids and a young standard poodle, what with Conor’s behaviors and the demands of his disability.

I do know that many of my friends with two typical kids are quite happy to stop at a couple of rug rats. They say it’s difficult, but in a way that is different than my difficult.  So I don’t feel like such a wimp when I visit them.

I have a friend with four kids, and I do sometimes sneak Aidan over to her house because, seriously, is she even going to notice that he’s there?  It’s such a scrum all the time. But generally, they’re a happy, well-adjusted tussle. Their home is one of those busy, chaotic, loud homes that make you feel cozy and warm, full of fun and friendship.

Sometimes, when I visit her, I think… could that have been me? What would that have been like?  I don’t know, she’s so laid back.  And me and laid back?  We’re not well acquainted, lets just say.

It doesn’t matter, I guess. A person can plan all they want, but in the end? It is what it is, and I know that there are many days when I feel my small family is just a little too full.  It rarely feels empty.

Maybe my husband will go for another dog.  Hmmmmm. What do you think?

Linus at 12 weeks

There's A Pill For That

It's 8:00pm on Sunday night, and so far we've avoided a tantrum.  If you had asked me last night if that was possible, I would have simply said not a chance in hell.

We wouldn't let Conor download a song on my sister's computer, and you'd have thought we cut off his right nut, what with the tears and the sobs and the gnashing and wailing.  Caterwauling, even. We got out of there by the skin of our teeth and the ride home was, um, unpleasant.

But still, he stayed on Level 3.  By some miracle, he did.

When we got home, I took him upstairs to change his clothes after some dinner.  He started weeping and sobbing again.

"Want some medicine!" he wailed.

"Why do you want medicine, Conor?" I asked.  "What's wrong, honey?" 

Maybe he's sick?

"Want some medicine to make the bad behavior go away!" he sobbed and sobbed.

"You don't need medicine, honey, you can do it on your own.  You're doing great staying on Level 3," I encouraged.  And he was, I could tell he was working really, really hard to restrain himself.

But what I wanted to say was--

"We all want that, sweetie.  We all want a pill that will make bad behavior go away."

Wouldn't that be nice?

Come Sit With Me

It’s no surprise that I sit and think about autism a lot. I ruminate, I plan, I think and wonder.  I turn it over and over and over in my mind.  I mull on it. I try to figure out how to strategize my way around it, out of it. I’d barrel right through it, I think… if I could. If it wasn’t always in the way of everything.

Sometimes I sit with autism and it's a warm, comfy, soft, pillowed chair-and-a-half that surrounds me, envelopes me.  It's comfortable, familiar even, and makes me want hot chocolate with mini-marshmallows and warm peanut butter cookies. It makes me feel peaceful, and loved.

But some days, I sit with autism, and it's a hard, wooden, stiff, Puritanical chair, unforgiving and mean.  It makes me squirm.  I can never get comfortable and it creaks and moans as I shift around. I fight it, and I curse it, and rail at it. It makes me feel stupid. Like I should have a dunce cap on and turn to face the corner.

I only lie on occasion with autism, because it’s really a bed of nails, scratching and poking and blistering. The only relief in sight is to get up and walk away. It makes me want to give up, to run away, to not do this anymore.  It takes strength, and endurance, and peace to lie gently with autism without getting hurt, and sometimes, I have none of those things left within me.

Butterflies

Conor pushed up the sleeves of his grey shirt this morning, layered smartly under his favorite striped short-sleeve polo.  He tried, but couldn’t quite get the sleeve up far enough to see the vivid bruise he was seeking. 

As a matter of fact, I was curious myself what it would look like this morning.  When he bit his left bicep last night, the bruise from last week’s tantrum was still quite visible on his other bicep, vivid purples, blacks and yellows.  It reflected the outline of his mouth, leaving a vaguely oval, jagged bruise.  

Now he has matching bruises on each inner bicep, like a pair of oddly sinister, butterfly-shaped tattoos. (I saw them both at shower time tonight.)

I studied his face intently while he was attempting to pull up his sleeve.  Did it hurt?  Is that why he was trying to look at it?  Was he hoping to marvel at the colors or did it give him some sense of satisfaction to see the remains of his tantrum?  

Was he fascinated by it, or, like me, horrified and ashamed and angry, sad and confused?

He seemed curious, I decided. Not embarrassed.  Not ashamed. A wonderment, maybe? Badges of honor? It’s hard to tell. He seems so detached from it all this morning, as if it happened to someone else.

Did it still hurt?  How could it NOT hurt?  The morning after a large tantrum, my son often seems glowering and surly. We ply him with Advil on a regular schedule.  I sense that he feels like he has the world's worst hangover.  He’s got to have an aching head, with all the head banging on the brick walls and our wooden floors.  His arms and hands must throb with the bites and the efforts of punching the wall and us. With all those scratches, washing your hands must sting.  I know mine do.

“So,” my psychiatrist inquired a few weeks ago, “your son’s tantrums aren’t just screaming and stomping his feet?”

Screaming and stomping feet?  I just stared at her.  “No,” I replied.  “It’s more than that.”

A Butcher, A Baker, A Candlestick Maker

A baker AND a Ravens fan!

Conor loves to cook, which is wonderful for so many reasons.  It's an extremely appropriate leisure activity and helps while away the hours on a rainy day.  He and I can work side-by-side on a nice banana bread and my husband can enjoy the fruits of our labor.  (I try to eat gluten-free so no banana bread for me. For the life of me, I can't get the hang of baking gluten-free bread.)  

Most importantly, Conor would like to be a chef when he grows up.  I can honestly see him working in a bakery one day, helping to get the muffins, scones, and cupcakes out the door.  Maybe he and I can even open our own cafe and sell baked goods, artisanal coffee, and books. (He does know how to work our espresso machine; he'd make a hell of a barista.)

 

The first step to realizing our dream, however, is to teach Conor not to pick his nose. I think the health department would frown on that.

 

Oh c'mon, like you never.  He just doesn't have the level of social awareness to go into the bathroom or do it in the car.  (I swear, people, we can see you in there. Duh.) 

The current protocol is to block and redirect.  We offer him a tissue.  He politely declines.  ("No, thank you, " he says.) I make him try using the tissue anyway. He's only 12 years-old.  I figure by the time he's 22, he'll have the hang of it.

 

Until then, I just tell myself that by eating what Conor has baked, we are strengthening our immune systems.  (I swear, honey, I don't eat the banana bread because it's not gluten-free.  Cross my heart. We wash our hands before we start, and again after we crack the eggs.)

There you go... our first product.  Conor's Immune Strengthening Banana Bread.  Baked with love and a little extra somethin' to keep your immune system activated. $10.95 per loaf.  

Get 'em while they're hot!