Friday, October 28, 2011

Hard to me

Nosce te Ipsum.... Latin for "Know Thyself". The older I get, the more I live by this belief.

In my 40s, I have attempted to know myself. I acknowledge what I am good at; and what I am not good at. Try and do more of what I love; less of what I don't.

Recently I was asked to be on a "fundraising committee". I hate fundraising. I have always hated it. Without missing a beat I said "No. No fundraising for me." Know thyself.

I can't parallel park to save my life. I get the flop sweats when there are no other parking options & I am forced to jimmy into a spot, especially if anyone is watching me. I will unapologetically drive 6 blocks to find other parking spot. I don't care if I have to walk. Know thyself.

I get lost easily. So, GPS on, even around town.

I cry excessively at funerals. I bring a washcloth and not a tissue.

I'm chubby. I buy pants that fit.

I don't bake very well. I offer to bring the appetizer - never the dessert.

KNOW THYSELF. KNOW THYSELF. KNOW THYSELF. KNOW THYSELF.

This is in contrast to my 30s, when my mantra was Fake Out Myself. "Sure I'll be on the fundraising committee.... Of course I will bring the dessert..... Give me a size 12 please...."

(This is also quite different from my 20s and my mantra of "Full of Thyself" but that's a whole 'nother blog.)

As an older mother, I am trying to instill this nugget of wisdom into my children so they don't have to wait until they need bifocals and Gaviscon before they know to play to their strengths. We all bring gifts into this world. Some are easier to identify than others. It's not to hard to spot the gifted athletes in Jr High gym class. It's a little harder to spot to the budding scientist or the natural born caretaker.

My little daughter is very soft-hearted and quite attached to me. She is starting to get invites for playdates and sleepovers. She isn't ready for a sleepover. She starts getting upset as soon as gets the invite... because she wants to go, but she knows she isn't ready to be away from home all night. "It's ok," I tell her, "you want to be with your mommy and daddy, that's who you are, that's how God made you. Someday you will be ready, but today you want to be home at night and that is perfectly ok." (and it more than ok with her father and I, as we aren't ready either!)

Recently, John has come to terms with the fact that he has autism. He is asking me lots of questions, hard questions. Sometimes, I don't have the answers. We were looking at old pictures and he saw a picture of himself at Chicago's Walk Now for Autism hosted by Autism Speaks. He was little & doesn't remember it. It opened the door to a big conversation about autism, what it means, why he has it and Molly doesn't, if it means he's stupid, etc. I wasn't ready for the conversation, but it arrived without an invitation and I had no choice but to have it right then and there.




Since then, we discuss it when it comes up and take it one day at a time. He processes it little by little. I hope he can make friends with it someday.

Truth is, I don't know why he has it. I don't know what the future holds. I don't know much, even though I am the mom and I am supposed to know everything.

I went to my son's Parent Teacher Conference today. Typically, a day I dread. However, today I was pleasantly surprised by reports that my son is excelling in all areas at school. In fact, his teacher tells me, he has really taken to writing and journaling. Record scratch Excuse me, come again? Getting my son to write has always been a huge challenge, but apparently in the last few weeks he is the second grade's answer to Ernest Hemingway. The counselor says he is choosing to express himself on paper, when his verbal communication fails him. This is a huge milestone for any child, especially one on the autism spectrum.

Before I left, the teacher shared a recent journal entry.


As I read it, in front of the gathered team, I felt the air get thick as I mostly unsuccessfully fought back the tears. Seeing his feelings on paper made them seem more real, somehow.

"That is why life is hard to me"

Not for me.

To me.

Indeed life is hard to all of us. Living amongst each other, sharing, learning, caring, earning, protecting, bargaining, grieving, obeying, co-cohabiting, leading, following... it's all hard. Marriage is hard, children are hard, money is hard, autism is hard. Life is hard.

At first, I wanted to be heartbroken. Who wants their 7 tear old to journal about how hard life has been to him? But then I reflected further. Life has been hard to John. Why should I be heartbroken that he is acknowledging the very truth of his life. Life has been hard, but joyful. Challenging, but rewarding. Painful, but full of laughter. He is merely owning the truth of his life. And succeeding in spite of it.

Nosce te Ipsum.

Know thyself.

Thursday, October 20, 2011

Blessed.

I occasionally am asked to speak at meetings, conferences and classrooms to discuss our autism "journey". I do not hold myself out as an expert in anything but my own life. But I do have a story to tell and I am somewhat of a story-teller. I have never had a fear of public speaking. In fact, I rather enjoy it.

It's funny that I get asked to speak about autism, because I have no idea what it is like to have autism. However, I do have a long term relationship with autism which started 17 years before I had children of my own.

When I was a teenager, I was a babysitting super-power. My father was a sailor and we lived on a Navy base. I paid for my first car (a 1976 AMC Hornet, thank you) with my babysitting cash. Which is impressive at $2 an hour. I was booked months in advance for the Holidays & if there was a large party in the neighborhood, it wasn't unusual for me to have 12 or 13 kids under my care. One day I got a phone call from a woman looking for occasional care for her disabled daughter. She asked if I could come for a visit, to meet her and her daughter and go from there.

I drove up her driveway and was totally wowed by the house... a huge, gorgeous McMansion on the banks of the St. John's river with a beautiful yard and a large wooden swing hanging from one of the tree branches. A small, nervous woman answered the door. She was well kept, neat, prim. Her house was House Beautiful beautiful. She invited me in, walked me to the sun porch, offered me some RC Cola and sized me up. She grilled me for 45 minutes while her daughter napped. Her husband was an Officer in the Navy and deployed overseas. She'd never hired a babysitter before. She had one daughter, Anna, age 4. Anna was "severely autistic". It was the first time I'd ever heard that word. If only I'd known what my future held.

Soon after, there was a HUGE racket coming from upstairs. It sounded like a herd of elephants. She looked at me and asked "Do you want to meet her?". I nodded and we walked upstairs. Anna's door was locked from the outside, a safety precaution. She opened the door and in this huge bedroom there was just one mattress on the floor, a few stuffed animals and Anna. Anna was rolling around on the floor, kicking her feet, making very loud animal noises, still wearing a diaper at age 4. She never registered our entrance into the room. She never looked at me or acknowledged me. Her mom looked at me gingerly... waiting to see if I was going to make a run for it. I didn't. "Are you interested in helping me?" "Yes, of course."

And that's how I became Anna's babysitter. I went for training on two occasions before the mom left me alone. The first time I babysat for Anna, on my own, her mother left for 15 minutes. And my guess is that she went to the end of the block and waited and came home. This was in the days before cell phones. Can you imagine how afraid she was to leave Anna with me? Anna couldn't speak... she could never tell her mom if anyone treated her poorly or didn't take care of her toileting needs or feed her. Eventually her mom would leave us alone for several hours at a time. I ended up being a dedicated caregiver to little Anna for nearly a year.

In that year, Anna never spoke a word to me. She never had eye contact with me. But she and I had a connection. I learned that the swing in the yard held the key to her calmness. I would sit on the swing and place Anna in my lap facing me. She'd lay her head on my chest and we would swing and swing and swing. I'd feel her ever-tense muscles relax, her anxiety would decrease and she would become almost... calm. In those moments on the swing I would sing to her and tell her long stories of Anna the Warrior, Anna the Explorer, Anna the Novelist. I don't know what she understood, but I could feel that she loved me and trusted me. And I loved her. I loved her very much.

Fast forward 20 years, and there I am, sitting in the doctor's office and hearing the word "autistic" again. Well, you can imagine the thoughts that raced through my mind as I searched by mental rolodex, climbing back through the years and the tangle of life experiences to try and remember everything I could about autism. My ignorance and fear combined to create easily the most terrifying moment of my life. I set out on a journey to educate myself in every possible way from that moment on. I would not be blindsided by autism, I would know about it, study it and stand ready to deal with it and yes, even love it.

So now when I am asked to speak about autism, I just stand and share what I know. I try and help demystify autism for anyone that cares to listen. Because fear is based on ignorance and it is so much easier to deal with something you understand.

That being said, I sometimes have a hard time explaining the way the autistic mind thinks. Therefore, I just try to use examples from our life to illustrate the interesting way my son views the world. I often share one of my favorite examples:

John has a love of filling out forms. Whenever he sees a form of any kind, he is compelled to stop whatever he is doing and fill it out. A few months ago, he was looking at a book from our shelf - A Children's Bible. In the middle of the book, there were some peachy colored pages called a "Personal Record" where the owner was supposed to write down important life events and people. He came to me while I was cooking dinner and asked me if I could help him fill it out. I told him I was busy with cooking and he should fill out the information he knew and later, I would help him fill in any missing information.

After bedtime, I found the bible sitting on the table, opened to the Personal Record. He'd filled out what he knew:


Name: John
Born: Blessed

Isn't that awesome? Instead of listing the date he was born, he listed his state of being at birth! Who does that??? John does. That's how he rolls.

What is kind of sad, however, is that if this were an SAT question, he would have gotten it wrong. Even though it's totally not wrong. It's incredibly, amazingly right.

I have come to the conclusion that autism isn't actually a deficit in brain function. Rather, it's an elevation of the human thought process. One we are just starting to understand.

He was born blessed. Wasn't he?

So was Anna.

And I am blessed to simply say I know them.

Friday, October 14, 2011

The Girl Who Cried California

I am blogging for one reason today and one reason alone. To purge my soul of the guilt I am carrying around with me. So, here goes.

First of all, let me tell you, I am a guilt expert. I was born with strong guilt genes. I was baptized into the Catholic church, which any good Catholic knows specializes in guilt (and if you don't know that, you aren't going to church enough and you probably feel guilty about that). Then... then I became a mother and both my guilt genes and my blue jeans increased substantially in size. So, I knows me some guilt.

How shall I begin? Let's see. Oh yes, my daughter. She has a teensy weensy issue with lying. It's been going on a while now. And she is the worst liar ever, which is why we are baffled as to why she insists on making it her life's work. It started when she was little. Her mantra was "Deny at all cost". I recall walking into the kitchen when she was 2. I see her and she is eating a cookie. Half of it is in her hand, she is chewing the other half, chocolate and crumbs all over her face. I say "What are you doing eating a cookie? It's almost dinner time." She looked right at me - blue eyes wide and shining and said "I'm not eating a cookie." When she said it, cookie actually flew out of her mouth. And yet, she stuck with her story that there was no cookie and looked at me with indigence that I should dare accuse her of the crime.

My husband and I were unequipped to deal with this issue. Our son, the oldest, is honest to a fault. He has no edit button and very little ability or reason to lie. So, when daughter came along, we were dumbfounded.

As she got older, she tended to lie to cover up naughtiness. There was a lovely pencil and crayon masterpiece drawn on the toy room wall. For two days she denied ownership of the painting. Finally, she broke down and confessed. Lots of tears flowed as she told us that she was the artist. But she did add that she hadn't done it recently, but rather a long time ago when she was little and didn't know better (the week before).

Lately, she's had a few cases of the Dramatic Flu in an attempt to get me to come fetch her from school. She misses me, she says. I miss her too. But I leave her at school. Until we see actual vomit, mom isn't coming to get her. Life's lessons are hard.

We've gone over it all a million times. We have told her about the boy who cried wolf, we've explained the virtues of honesty, we've punished her for lying and we've rewarded her when she is honest at every turn.

And for the most part, she has greatly improved and now regularly tells on herself and purges her soul of its lying ways. She is an incredibly sensitive girl and does not enjoy getting in trouble at all. I am proud that she is making steps in the right direction.

However, today. Today we had a backslide.

I knew something was up when I picked her from school yesterday. As she said goodbye to her classmates, there was quite a display from the group. Lots of hugs and "I'll miss you Molly"s coming from the group. She looked like a soldier heading off to war. It seemed odd, but I didn't think much more of it.

This morning as we were getting ready for school, I could see Molly's anxiety building. She didn't want to go to school, she didn't feel good, she needed a day off... etc etc... So, I took her in her room, snuggled her on her bed and said "What's up, honey? What is going on at school that you want to avoid today?"

After much hemming and hawing, it came out. And it went something like this:

"Mommy... I did something really stupid and now I don't know what to do about it. I told Jordon I was going to California today to see my Grandma and that I wouldn't be back until after Christmas. And Jordon was so excited that he told everyone in my class and now everyone thinks I am going to California and when I get to school today everyone is going to know I didn't go to California and no one will like me anymore."


And then she started sobbing... really sobbing. She looked so small and broken. And it killed me.

Who among us hasn't been in that very spot? When you dig yourself into a hole and you just don't know how to get out of it. And all you want is an answer, a way out, a magic pill.

I talked to her about lying and all the things a mom is supposed to say and then had her continue to get ready for school. She got herself together, but I could see she was miserable inside.

We dropped her brother off at school and headed to her school. I parked the car, got out and climbed in the back seat with my daughter. I put my hands on her shoulders and said "Molly, I am going to help you out today. I am going to tell your friends we aren't going to California after all. But I want you to know, I won't ever do it again. The next time you get yourself in a mess like this, you will have to face the music and tell your friends you made up a story. And I am warning you that they might not want to be your friend anymore. So, today I will help you out. But never again, understand?".

And she threw her arms around me and sobbed with relief.

Together we walked up to school and her class was waiting in line. I summoned Jordon over to us and said "Molly won't be going to California after all... spread the word". Jordon fist pumped the air and yelled "YES! I didn't want her to leave anyway!" and off he ran to spread the word like Paul Revere notifying the colonial militia that the British were coming.

I looked down at my daughter and winked. She gave me a hug and I left her there to accept the hugs from her classmates that were happy to have her back from the trip she didn't take.

So, all in all, not my finest parenting moment. Any pro would tell you that I should have let her accept the consequences of her behavior. But today, I threw her a lifeline instead. It probably wasn't the right thing to do, and that's why I am feeling a little guilty. But I did it anyway. And it felt pretty good.

And that's no lie.

Tuesday, October 4, 2011

Big Bang Theory

I was teenager during the 1980's. Madonna, Cyndi Lauper, Michael Jackson, Prince, acid washed jeans, palettes of eye shadow and bangs to the sky. I was a pretty typical teenager. I loved music and saved babysitting money to buy the latest albums (shut up, I'm old). I stretched our home telephone cord within and inch of its life so I could retreat to the privacy of our pantry to talk on the phone. I had friends and good grades and lots of extra curricular interests. But I was a chubby teen and I was terribly self conscious. There were no two words I feared more than "pool party". I am certainly not the first teen with body issues, I won't be the last. One particular feature I hated was my "high forehead". I had been wearing bangs my whole life to reduce its ginormity. I was so jealous of girls with normal heads that could wear their hair off of their faces with confidence. One day... during my Sophomore year of high school (referred to as my Suckmore Year, but that's another blog for another day), encouraged and bolstered by the gigantic and fully exposed bangless forehead of 80's singing star Jody Watley, I styled my hair with my bangs off of my face. I walked out of the house that morning, newly confident and feeling for the first time the sun and wind on my forehead.

I walked into school, went to my locker and started the dreaded walk through the "Senior Locker Area" on my way to homeroom. I passed a group of jocks that were gathered in an informal huddle and quickly walked by, avoiding eye contact. Then... I heard it. Clear as day. One of the boys said "Nice forehead" and the whole team laughed. Even typing those words gives me a teenage pit in my stomach. I was so horrified. I walk/ran to the nearest bathroom, locked myself in the stall and furiously started breaking through the layers of Rave Mega Hold hairspray in an effort to return my bangs to their rightful place - covering my perceived deformity. I was late for first period that day. I was so embarrassed, so humiliated.. that I didn't ever tell a soul. Not even my best girlfriends.

That was 1984. I haven't worn my bangs off of my forehead since.

It's so stupid isn't it? Every time I pull my hair back to wash my face or lay in the sun, I look in the mirror and hear it: "Nice forehead". Who cares what some dumb jock said in 1984? I do, I guess. Because even as I type this, I feel vulnerable. Why? Because words hurt. They resonate deep within and they are recorded in our brains. One guy, a faceless voice from a pack of idiots, has governed my hair style for 27 years. Isn't that something?

The other day, I picked my kids up from school. There were some older boys hanging out waiting for their ride I guess. I don't know how old they were, maybe 12. I was talking to one of the other moms and my kids were running around a tree acting silly. The older boys were in the tree, sitting on branches, rolling their eyes and cracking wise - which is the chief job of the 12 year old boy.

Now my son can come off a little odd to other kids. He is nasally and a little stiff. Also, he has the vocabulary of a 40 year old chemistry professor. I yelled to my kids to head to the car and they took off running. As I walked from the tree, one of the boys yelled to my son "Run Forrest Run". I don't know if my son even heard it, and frankly he wouldn't get the reference. But I heard it. And my face got instantly hot and my hands started to shake a little and it was 1984 all over again. But I wasn't 15. I was 42. And I wasn't the victim, I was the protector. And he wasn't Forrest Gump, he was my son. My life.

Without thinking, I spun around and marched my high forehead right over to the tree. I looked up to the two boys and said "Did you just say "Run Forrest Run" to my son?". I was using a very quiet voice, but I must have looked mad, because they looked scared. One kid confessed and sheepishly said "Yes, it was me. I didn't mean it." I said "Then why did you say it? In case no one ever teaches you this, boys, let me teach you today that words hurt. Now, don't say mean things ever again, you hear me." And I flipped my hair and walked to my car. (A hair flip is my signature move during any confrontational situation).

OK, so I am sure they didn't listen to me and I am really sure that they likely said a mean thing the very second I was out of ear shot. But I felt better. Maybe my words will resonate with them someday and make them nicer people. I can dream, right?

I didn't graduate from the high school I attended my Suckmore Year. I transferred to a high school of performing arts the following year and graduated with honors. And even though it was the best decision of my life, it killed my fantasy of returning to my old high school for my 30 year class reunion and finding Mr. Jock, eyeballing his receding hairline and muttering... "Nice forehead". ;)

Sunday, October 2, 2011

House Dress

When I was pregnant with my first baby, I actually believed he would arrive on or after his due date. All of my friends that had gone before me down the baby-making path had shared their tales of woe of being painfully, miserably overdue. I'd heard a hundred old wives tales all guaranteed to bring on labor... spicy foods, castor oil, walking, a bumpy car ride, raspberry ginger tea.... and finally: sex. That last one I suspect was invented by a frustrated spouse who was willing to spin any yarn to get a little nookie. Anyhoo, I was happily sitting in my office, a cute little baby bump between me and my flickering computer when I stood up to go pee for the 100th time that day and ... ta da .... my water broke. I was only 35 weeks pregnant. I hadn't even packed my bag (It was on my calendar to do on Week 36 - the RECOMMENDED WEEK YOU PACK YOUR BAG!) There was no plan, yet. I couldn't even say "Ricky it's time" using my best Lucy Ricardo voice because "Ricky" was 2 hours away. So, I did what any modern female does, I closed my laptop and drove myself to the hospital, waddled in and said "I think I might be having a baby". (If I could turn back time, I would have driven to McDonalds first because as it turns out I was on the ice-chip diet for the next 48 hours. Oh how I hate you, ice chips.)

All this to say, I spent the next three hours on a gurney making phone calls on my Blackberry and sewing up loose ends. One of calls I had to make was talking my husband through packing my bag. This, my friends, was a disaster of epic proportion. Maybe he was being nice, but the underwear he packed were the teeny tiny ones that landed me in this predicament in the first place. Seriously? So, I surreptitiously called my mom and had her bring a bag of rations. Without a word, she hung up and began packing. She needed no further direction. She packed ginormous underwear that came to work not play. She brought me fat, cozy socks. She packed some nice smelling lotion, a scrunchie and a hairbrush. She even threw in some Jean Nate in case I needed to splash myself with a little Wow! Lastly, she tucked in something she called a "house-dress". She said she had an extra one in her drawer that I could have. It was perfectly aged soft cotton, and snapped up the front. "Perfect for nursing!" my mother exclaimed. I'd never owned a house-dress. And frankly, I felt like I was a little, eh hem, young for such a frock. And since I was currently wearing a hospital gown, I tucked it back in my bag for later examination.

Well... 36 hours of labor and a c-section later my son was born. He was tiny, and severely jaundiced and struggled with some other issues requiring a rather lengthy newborn hospital stay of 8 days. The night we got home, I took a nice shower, grabbed some industrial underwear and a hideous nursing bra and dug around to find something, anything to wear. I was sore from top to bottom and I also had an unplanned incision in my abdomen. And, shockingly, I still looked kind of pregnant. And then I spied it.... With it's delicate pink floral pattern and flutter sleeves. The house-dress. I pulled it out of my bag and examined it. It was so soft and flowing, loose and easy. I pulled it around my shoulders and snapped it up. Ahhh.. it was pure Heaven. Nothing binding or tugging. I LOVED my house-dress! I'll never wear anything else ever again!!!!! ALLELUIA! Until. Until. I looked in the mirror. "Well hello there, Mildred, how's the sciatica?" Oh well, I thought, it's just around the house. Right? It's a house dress. So, I casually strolled out into the living room, acting like I'd worn a house-dress every day since my honeymoon. I wish I had a camera so I could show you the look on my husband's face. It was a combo platter of horror, disgust, and fear. He knew not to say a word in my fragile, hormonal, lactating state. But some conversations don't need words. I knew. I knew that if I ever wanted my husband to ever like me in a girl-way ever again I needed to take that house-dress off and pretend it never existed. And so I did (the next morning... Come on, I was too tired to change clothes).

And so I laid the house-dress to rest in my bottom right dresser drawer. From then on I donned the more age appropriate post baby uniform of sweats and t-shirts. My husband no longer looked at me with scared eyes and all was right with the world.

But. I have to tell you the truth. Whenever my Big Lug goes out of town for work, I get that bad boy out and put it on. I pull the drapes and spin and twirl around the house like some crazy old spinster in a wedding dress. I love that damn house-dress. I love it, you hear me. It makes me mad we have to hide our love. We're like the Romeo and Juliet of the garment world.

And folks, on my 70th birthday, I am putting that house-dress on. And I am going to wear it. Everywhere. I might even pick up an AmeriMark catalog and order a few more.

And I can't wait.