Thursday, June 23, 2011

The View from Above

"One of these things is not like the others, one of these things just doesn't belong..."

Remember that from the old "Sesame Street" days? Or was is it "Electric Company"? Regardless, it was one of those shows on Channel 12, the only kid's channel we had growing up. We not only didn't have a remote, we had to turn the channel with pliers. It was a different time. But back to my point.

I am writing this from our family of those fun, family times with lots of cousins and sunshine. I don't see my nieces and nephews very often. Not by choice, but by geography. When we all get together, all the kids have to acclimate themselves again to being together and each child works to establish his or her role in the family dynamic. It's funny to watch last year's goofy tween show up as this summer's sullen teen. So many changes, in such a short a time. One nephew that couldn't get enough hugs and kisses at Christmas, is embarrassed that you even look at him on 4th of July. That's how it goes with kids.

Tonight, I am watching 7 kids - my two plus five others - while the grown-ups attend a graduation. When I made dinner I was channeling my inner Kate Gosselin, but with better hair and a sweeter disposition.

The reason I am home is by choice. There was the option of a teen babysitter, but with my oldest son, a strange babysitter in a strange town in a strange house is a recipe for a very familiar disaster. Rolling with the punches has never been his forte'. So, instead I offer to stay behind to try and prevent any disasters from occurring that could disrupt the family fun.

It’s interesting to watch my son navigate the social scene of a family gathering. Among the cousins, there is a healthy blend of competitiveness, camaraderie and good-natured ribbing. Watching John is like watching a clumsy American attend a formal state dinner in a foreign country: Well intentioned, overly eager to please... but totally sticking out like a sore thumb.

Nothing about conversation, chiding and banter come naturally to him. He will start talking to a fellow 7 year old about the electromagnetic field and how fascinating it is and totally fail to notice that the kid is glazed over, bored and confused by the Jr. Scientist before him. He will bring up a similar topic to older cousins and I will watch as the tween girls exchange smirks and giggle at his nerdiness, his oddness, his scientific approach to life.

And I, as his mother, want to run over, grab him away from all of them and scream “STOP MAKING FUN OF HIM!!!” But I don’t. I sit, and watch, and die a thousand times inside. All moms want to protect their children, but not protecting them is what we have to do. We have to let them suffer through it, fight their own battles and God willing learn from their mistakes.

There is a term currently in vogue called "Helicopter Parenting"... and usually it's the poor Mom that gets hit with the even more charming name "Helicopter Mom". Helicopter Moms are moms that sort of hover over over their children and become overly involved in their lives. I am a card carrying Helicopter Mom. I don't want to be, but if I am to be honest with myself, I can't deny it. I suspect I am the only person that watched "Boy in the Plastic Bubble" with 70's John Travolta and thought "Damn, his mom is lucky, that kid is SAFE."

Here is the reason (excuse) I helicopter: I can't stand the thought of people making fun of my kid. And. They do. Whenever I observe my son in public, and people don't know I am hovering nearby (nyuk nyuk), I see it, I hear it. It's there and I hate it. So, I hover and prevent it when I can. I'm old fashioned, I prefer people make fun of us behind our backs.

Here's the beauty of autism. My son is blissfully unaware that people are making fun of him most of the time. Because he doesn't understand nuance, sarcasm and non-verbal responses - he usually just drones on & on in cerebral bliss while the poor listener rolls their eyes and yawns.

So, maybe I hover to protect my own heartache. I am, after all, incredibly & ridiculously soft-hearted. I once overheard a 6 year old at the YMCA call my kid a "weirdo" and I cried all the way home. I am embarrassed to even admit that. But that's how I roll. Maybe I hover because I am a little bossy and mico-managing. ha ha I can hear my husband agreeing from here.

Whatever the reason, I really need to probably cut it out.

And I am going to.

I promise.


Now, where the hell is my landing pad?

Monday, June 6, 2011

Molly the Brave

I was in the doctor's office one day getting weighed and measured at one of the several hundred trips to the ObGyn you make when you are pregnant. It was my second baby in as many years and I was an old pro. I was standing there while the thin, perky nurse jotted down a few things in my chart. I noticed that, written on the outside of my chart, in large red alarming marker strokes were the letters AMA.

AMA? American Medical Association? American Music Awards? I was confused. So, I made a giant mistake and asked.

Advanced. Maternal. Age.

I was 35.

Not a hundred and thirty five. Thirty five.


Looking at the girl next to me... standing there with her minuscule baby bump poking out and her 9th grade homework in her hand. I thought to myself "... and I'm the one considered high risk... hurrumph".

All this to say, I was, and am, an older mother. Which brings with it some sweet perks on the pregnancy front. Like frequent and awesome ultrasounds in 2D, 3D, WD-40, you name it.

I will never forget laying there while the ultrasound tech roamed around my belly with her goopy wand and then pointed to the screen to show me my tiny little baby with tiny little baby girl parts.

A girl! A daughter! My daughter. My very own daughter. I instantly felt like my insides were filled with hot caramel and I could almost feel my heart double in size for this baby inside me, this first precious and perfect daughter.

Now... this sweet little girl was certainly sweet, but she was not little. She was a "Scheduled C-Section" and she went FULL term. It was a breeze of a delivery, but when they showed her to me, I was in shock. She was such a big baby - soap opera big. Almost 10 lbs. But she was perfect... with enormous blue eyes and one little dimple on her right cheek. And the minute she was born, I felt such relief and I also felt super skinny. This, of course, was pure delusion, but with a little help from my old friend Morphine, this skinny illusion lasted several glorious hours.

I named her Molly. I knew she was a Molly my whole pregnancy. She came out and she looked like a Molly. She still does.

Molly arrived at a time in my life when I needed her most. She's been my constant side-kick for nearly 6 years. Molly's only true regret in life is that the doctor cut the cord. She'd prefer it if we were actually still connected.

But what she doesn't understand, and won't for many years, is that our connection is stronger even than a physical one. She and I both are the youngest of two children. We both have older brothers with disabilities. And we both have a flair for the dramatic. Shocking, right?

When she was very little, one of my dear friends gave me a book called "Molly the Brave". I liked the title and all that it implied. I really wanted my daughter to grow up braver than I. I may have seemed fearless to outsiders, but in truth I was afraid (and still am) of new situations, new people, new routines. I mask my fear with jokes and faux bravado, but I still am not very brave and therefore rule my life with planning and preparation, to avoid occasions of surprise.

But guess what? Molly, as it turns out, had plans of her own and developed a personality independent of my micromanagement (the nerve). She really isn't so brave after all. When she is comfortable, she is the life of the party. But walk into a room of strangers and she is practically back in utero. At the school talent show, she folded like a deck of cards under the pressure. Which shocked me because she is such a ham at home.

Instead, Molly has some other traits that have emerged in her nearly 6 years of life... She is the kindest little soul on the planet. She really truly cares about people, animals, strangers, celebrities, plants, dandelions, gnats. She pleads the case of all things living or dead. She doesn't think twice about sharing the last cookie or letting someone else go first. She is generous beyond words.

Having a brother with special needs isn't always easy. Yet Molly handles it all with extraordinary grace.

The other morning we were walking into church. There were two collection envelopes that day... one for the regular weekly collection and one special collection. The special collection envelope was blue. My kids get great joy out of putting the envelopes into the collection basket. I - without thinking - handed the regular one to John and the "blue one" to Molly. John decided he had to have the blue one or life as we know it could. not. go. on. I told him that I had already given the blue one to Molly and next time there was a special envelope he could have it.


Did I mention this all went down inside the church. The big, old, otherwise silent Catholic church? Did I mention all the old parishioners were giving me the "Back in my Day..." stare?

Then he stopped yelling, bowed his head and sobbed.


And then my daughter... who is merely 5 years old.... crawled over my lap and slid the coveted blue envelope into John's soaking wet, tear filled hands. He looked up and said "Really?" and she said "Sure, why wouldn't I give it to you? I don't want you to cry anymore, Johnny."

I was never so proud. Her purity, her kindness, her unselfishness in a world where selfishness is king - brought me to tears.

We were quite the sight, we three. John red faced and still hyperventilating. Me - smiling and wiping my own tears. And between us - our youngest family member: Sweet, precious Molly...

Molly the Kind,

Molly the Generous,

Molly the Loving,

Molly the Brave.

Friday, June 3, 2011

Story Teller.

When my mom was recovering from cancer (how's that for an upbeat beginning), I moved in with my parents temporarily to care for her. There was a hospital bed in the living room and I slept on the couch. My mom was recovering from a 16 hour life-saving and life-changing surgery. It was a scary time.

During the first few weeks, I am not sure what was going on, but the combination of heavy medication and anxiety caused my mother to wake all through the night and have lengthy conversations with me. Most of which made little sense.

One particularly long night, my mom woke up crying hysterically. She couldn't sleep and had herself convinced she would never, ever fall asleep again. I was exhausted and desperate.

I went into the kitchen and came back a few minutes later with a pill. Here is the conversation:

"Mom, I called your Oncologist. She told me to give you this pill. She told me to make sure I gave it to you laying down, because it works very fast. It is a potent powerful sleeping pill."

So she took it. And within 3 minutes she was sound asleep and remained asleep until morning.

Confession: I didn't call the Oncologist. I didn't dash out to Walgreens at 2 a.m. I gave my mom a Vitamin C pill I found in her cabinet. I gave her a dose of permission. Permission to put her brain to sleep.

For the next 3 weeks, I gave her a "sleeping pill" before bed nightly. It was a miracle. She slept like a rock. So did I.

The brain is a powerful thing. Its belief guides the body. Its fear paralyzes; its optimism cures.

My son once told me that his brain moves too fast. He said he feels like his brain is rolling down a hill and he can't catch it. Sometimes, his hands and feet follow. Lots of times he looks so confused when he gets in his hands and feet arrived at the scene and caused a bunch of trouble before his brain showed up and put a stop to the shenanigans.

My son also wrestles with some OCD-esque issues. OCD is no way to live. It's a tortuous existence where your thoughts just recycle and replay to the exclusion of any new thoughts. In our house, we call it "getting stuck". If my kids had any idea what a record album was, I would tell them John's record was stuck and his needle needs a nudge.

So, in order to gets John's brain unstuck, I tell him a few... eh hem... tall tales.

For instance, I tell him that his pillow has a fast side and a slow side. At night, when he can't settle down I flip his pillow to the "slow side" which he now believes miraculously slows down is brain.

When I am sick, he gets very nervous & anxious. I tell him orange juice always makes me feel better. And he pours me a glass with shaky hands and, with that little bit of control over an uncontrollable situation, magically, HE feels better.

I have a secret location in the house where I keep objects for safe keeping. No one knows this location but he and I. When he is obsessed over an object and wants to take it to school (a no no) we store it in the super secret location and... he can breathe.

When he is consumed with a thought, an idea, a costume, a character, a gadget... We write it down on paper. We get it out of his brain, and onto a notepad. I tell him "Johnny, tell your brain it doesn't have to work non-stop to remember this, because now we have a written reminder." When he gets his idea written down, I see him physically relax since as his brain has been given a temporary respite from that particular thought.

Such trickery, you say? Perhaps. But in this life you do what you have to do to get by. Whether it's a sugar pill, a magic pillow ... or hanging on to your pre-pregnancy jeans fully believing you'll wear them again.

We all tell our brains stories when the reality is just too much to bear. "He's in a better place," "It's God's Will," "Everything happens for a reason."

My husband fears my son will resent me when he grows older and learns of my little white lies. But, I know that he won't. I know because he and I have had a perfect symbiotic relationship since birth. When he couldn't speak, I provided his words. When he was baffled by figures of speech, I translated. When he couldn't describe how he was feeling, I read his face. When the world was cruel, I held his hand and showed him how to be brave. And when he needed me to weave a story and put his brilliant, over worked, insanely detailed mind to rest... I told one.

I am a story teller. And I know he will love me for it.