A Thank You Letter

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My little dude,

We made it through our first Christmas together, just the two of us. I can admit to you now that I moved about it reluctantly. I went through the motions hoping my heart would catch up. I knew it would be different and yet I was so bull-headed about making it feel the same. I tried so hard to keep as many of our Christmas traditions intact. I've never chopped a tree down but we did it. I wasn't feeling the Christmas spirit, but I decked the halls anyway. I let you listen to "Santa Baby" and "Little Drummer Boy" over and over in the house while I retreated to my world between my left and right ear buds. Christmas can be so wonderful when all is well but for some it only highlights what is missing.

I confess I didn't know how to celebrate a Christmas for two. I grew up in a household of seven. It was always loud and full of energy. Our house was the social intersection of the neighborhood -- kids shooting hoops on the driveway or hanging out playing Atari in the basement. I don't recall ever needing a key to the house when I was a kid because someone was always home and the door was always ajar. So you can imagine what Christmas was like - a swirl of moving bodies, a steady hum of noise punctuated by occasional uproars of laughter or discord.

Our Christmas was nothing like that and yet you were fine. You didn't seem any less excited - so much magic in your eyes. You believe and your spirit carried me through the day. Every year I look forward to seeing the expression on your face when you first come down the stairs and see that Santa, indeed, paid a visit. But that wasn't my favorite moment this year.

Do you remember when we were eating our French toast and strawberries? You squealed because you couldn't believe low-carb mom was allowing herself a sugar splurge and mid-laugh, it hit you. Your eyes wide, you looked at me and said, "Mom, you didn't open any presents. Why didn't you get any presents?" And you were right. It was a first for me. I don't recall a Christmas I didn't open a single present on Christmas morning. I admit there was a twinge of sadness about it but surprisingly not so much. It was overrun by the moment.

I was told that your autism would make perspective taking difficult for you and feeling empathy for anyone was a long shot. Before you were born and before autism ever came into play, I made a short list of the most important life lessons I wanted to teach you and empathy was one of them.  Autism stands tall as a hurdle but I will not concede to a diagnosis. How long have we worked with therapists on social skills -- trying to teach you what is socially expected? So many things other children know intuitively, you had to learn. How many times have we played the feelings game or sat in a waiting room or a park watching strangers and guessing what people mean with a simple gesture of the hand, a tilt of the head or hunched shoulders? I went to conferences, lectures and read books about social thinking -- the "why" behind social skills and then signed you up for as many social thinking classes and camps we could afford. And that's when I saw you begin to stretch outside of your own mind. Keep going.

And look at you now. Not only did you see Christmas through my eyes, you felt my sadness with your own heart. You make me so proud. It's true, my dear son, you saved Christmas for me and I am ever so grateful.

Love always,

Mom

Holiday Tunes with a Twist

I have to admit. I can't take another version of "I'll Be Home for Christmas" or "Mama's Been Kissing Santa Claus." So I've been trolling playlists for something different to celebrate the season. Enjoy.

1. Sarah Jarosz & the Transatlantic Sessions House Band, "Ring Them Bells" (Bob Dylan cover) 

Ring them bells, ye heathen
From the city that dreams
Ring them bells from the sanctuaries
’Cross the valleys and streams
For they’re deep and they’re wide
And the world’s on its side
And time is running backwards
And so is the bride
Ring them bells St. Peter
Where the four winds blow
Ring them bells with an iron hand
So the people will know
Oh it’s rush hour now
On the wheel and the plow
And the sun is going down
Upon the sacred cow
Ring them bells Sweet Martha
For the poor man’s son
Ring them bells so the world will know
That God is one
Oh the shepherd is asleep
Where the willows weep
And the mountains are filled
With lost sheep
Ring them bells for the blind and the deaf
Ring them bells for all of us who are left
Ring them bells for the chosen few
Who will judge the many when the game is through
Ring them bells, for the time that flies
For the child that cries
When innocence dies
Ring them bells St. Catherine
From the top of the room
Ring them from the fortress
For the lilies that bloom
Oh the lines are long
And the fighting is strong
And they’re breaking down the distance
Between right and wrong


2. Lissie, "2000 Miles" (Pretenders cover)

He's gone 2000 miles
It's very far
The snows falling down
It's colder day by day
I miss you

The children were singing
He'll be back at Christmas time

In this frozen and silent nights
Sometimes in a dream
You appear

Outside, under the purple sky
Diamonds in the snow
Sparkle

The children were singing
It felt like Christmas time

2000 miles
Is very far through the snow
2000 miles
Is very far through the snow
2000 miles
Is very far through the snow
2000 miles
Is very far through the snow

I'll think of you
Wherever you go
I'll think of you
Wherever you go

He's gone 2000 miles
It's very far
The snows falling down
It's colder day by day
I miss you

The people were singing
It must be Christmas time

The people were singing
It must be Christmas time 

3. Mumford & Sons, "Winter Wind" (acoustic version)

As the winter winds litter London with lonely hearts
Oh the warmth in your eyes swept me into your arms
Was it love or fear of the cold that led us through the night?
For every kiss your beauty trumped my doubt

And my head told my heart
"Let love grow"
But my heart told my head
"This time no
This time no"

We'll be washed and buried one day my girl
And the time we were given will be left for the world
The flesh that lived and loved will be eaten by plague
So let the memories be good for those who stay

And my head told my heart
"Let love grow"
But my heart told my head
"This time no"
Yes, my heart told my head
"This time no
This time no"

Oh the shame that sent me off from the God that I once loved
Was the same that sent me into your arms
Oh and pestilence is won when you are lost and I am gone
And no hope, no hope will overcome

And if your strife strikes at your sleep
Remember spring swaps snow for leaves
You'll be happy and wholesome again
When the city clears and sun ascends

And my head told my heart
"Let love grow"
But my heart told my head
"This time no"

And my head told my heart
"Let love grow"
But my heart told my head
"This time no
This time no"

Peace on Earth

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Melanie's Christmas Wish List - (ongoing)

Melanie's Christmas Wish List

• An independent coffee shop that offers free wi-fi, STRONG extra hot coffee, great tunes, lots of sunlight, access to a printer, a quiet room (similar to the quiet train on Amtrak) and some carb-free snacks.
• My own lane on the Beltway during rush hour.
• Speakers in my bathroom so I don't have to drag my laptop in their every time I take a bath - or a way I can actually keep my ear buds in while taking a soak. (without frying my iPhone)
• Wi-fi at Teaism.
• A carb-free Salty Oat cookie. (related to above - and if you've never had one you must next time you are in DC)
• A fraction of the patience, spunk and never-give-up attitude of some of the amazing mothers and fathers I've met who love and raise a special needs child.
• A month (or perhaps 6 weeks?) to just forget my troubles and take off to an exotic locale where I can do Teacher Training in yoga.
• A 28 hour day because then my bedtime would be closer to y'all. 
• A crunchy, juicy, tart granny smith apple or a plump, juicy, summer's-end sweet Georgia peach I could bite into and consume without going into anaphylactic shock.
•  Fast twitch muscles so I can actually run as fast as I think I'm running in my own head.
• Herman Cain announces he's rejoining the 2012 presidential race. (The Daily Show hasn't been the same without him)
• Wi-fi at Chuck E Cheez -- c'mon Chuck E Cheez franchise owners, why haven't you figured that one out yet? It's a no brainer.  
• A healthy internal organ for my friend.
• A fantastic grown ups only party so I can wear my sparkly 5-inch heels again.
• The power to extract Pennsylvania off the map so my drives to Ohio and NY would go faster. (Apologies to my friends in the Keystone state but I've grown weary of the scenic drive along the Pennsylvania Turnpike and the crawl through Breezewood especially the day before Thanksgiving)
• Buried treasure in my backyard so I can grant wishes to all the wonderful people who have helped and supported the little dude and I this past year.
• The power to fast forward the next six months. 

*****

A lot of these items are pipe dreams but YOU can help me check off one item.

Join Apple Moon as a member and follow me as I make my way through my crazy life. Do you know what would make me even happier? If you shared some of your thoughts so this blog is not all about me. 

So join me. In fact, tell me what's on your wish list. I'm sure I left something out.

Happy Holidays!

 - Melanie

Happenstance

I think most would say I'm pretty sensible and methodical in making a decision. I study every option, talk to several trusted individuals to get a range of opinions, make my pros and cons list so I am resolute.  I am a tireless researcher. Heck, I researched all the options for house numbers for my tiny brick colonial for almost a year before I settled on something. I can pretty much tell you anything you want to know about house numbers. (Not as many options as you would think.) You've got aluminum address plaques, casted bronze or steel numbers or perhaps ceramic terracotta tiles? It's ridiculous, I know.

For some things in life, I just can't make a decision until I've done my due diligence -- until I'm sure I've exhausted every resource out there. Where does this come from? I'm an academic at heart and just love the research part of any assignment. The more information the better. During grad school, I could get lost in the stacks all day, planting myself in a dark study carrel hunting for the perfect primary source, searching for inspiration from a dusty book --  or going through hours of microfilm until I was motion sick scanning and squinting at the soft focused screen. How different would it be to go to school today? Do you think you could identify one student under the age of 18 that's used a card catalog, microfilm or microfiche?  I'd emerge from the bowels of the library, mind racing from all the info I'd unearthed. The hard part was making myself finish the research portion to start synthesizing the information into something cohesive. A good long run often did the trick -- that's how I usually came up with my best ideas.

So you'd think with major life decisions, I'd utilize the same methods, my decisions carefully thought-out. I have a confession to make -- not so. College, for example:  did I talk to guidance counselors? Did I research rankings of top universities? Did I visit dozens of colleges? No. My brother visited Kenyon College in Gambier, Ohio when I was a freshman in high school, came back and told me it was a beautiful school. He didn't think it was the right fit for him but he smiled at me and said, "I think you'd like it there. I kept picturing you going to school there, Mel." And that's what sealed it for me. I knew all through high school where I would be going. I applied early decision and before Christmas break I had a purple and white Kenyon College decal on my Volkswagen's rear window. It was one of the best decisions in my life.

Sometimes inspiration does not strike and I blindly make decisions based on others' expectations. That's what I call my detours in life. I joke that my parents were very open-minded about their children's career paths. "Melanie, you can be anything you want to be as long as you're a doctor, lawyer or you get your MBA." After a short stint as a Candy Striper in high school, I quickly decided against med school because I couldn't stand the smell of hospitals. I wasn't much of a bean counter or interested in selling anyone anything, so, by process of elimination I figured I would be a lawyer. I moved to Boston after Kenyon working as a paralegal for a law firm. I really should have been happy with my promising Ally McBeal life. Living on Beacon Hill right next to the "Cheers bar" I could walk through the Commons to work. I worked in  a building on Franklin Street and I had my own office with a view of the Boston Harbor. Little did I know that it would be the best office space I would inhabit thus far in my life. But I found the staid, corporate atmosphere of the workplace to be stifling. Nothing inspired me there. Furthermore, I couldn't write the law school application essay explaining why I wanted to be a lawyer -- a sure sign it wasn't for me. After a year, I quit the law firm. Just like that.

So fast forward to present day. I'm back to work after being a stay at home mom for over 6 years.  I call myself a producer/writer in television news and documentary although I think the job is best described as creative problem solver and designated worry-wart. How did I pick this path? God knows no one in TV is in it for the money.  For every story I develop or write, I get to become a pseudo expert on crazy stuff like crocodile relocation in Jamaica, exorcisms in Manila or Japanese organized crime. I've always appreciated that. But is that how I chose my career? No. I was so tired of the corporate wardrobe I wore every day in previous jobs. I remember coming home and peeling off panty hose on a 99-degree summer day muttering to myself that some Frenchman (not FrenchWOman) invented panty hose. Not only was it uncomfortable, it was distracting and constraining, draining any original thought out of my head. I liken it to ties for my male followers out there. The whole corporate dress code felt like a uniform of conformity not an expression of the creative self.

In TV, the executives are referred to as "the suits" and they are usually housed on a separate floor or even a separate building than those making films. The rest of the crew --  the producers, researchers, writers, editors, etc. -- they sport casual Friday attire all week long and that doesn't necessarily mean dressing like you just rolled out of bed (for some, maybe -- actually, I remember a wildlife filmmaker who spent so much time in the bush he never wore shoes in the office). For some, clothes speak to who they are as individuals. Their true personality shines through in a well-worn t-shirt or a kick-ass pair of boots. I think I will always prefer working in the trenches wrapped in a toasty sweater and jeans rather than a tailored suit, my feet warm in bulky hiking socks and toes snuggled into my clunky clogs. As you can see, it's all rather happenstance how I've arrived to this place in my life. It was my loathing for panty hose which pushed me onto my current career path.

So here I am again, standing at another crossroads personally and professionally. Like the classic Clash tune asks, "Should I stay or should I go?" Do I protect and nurture what's familiar or do I move on to something new? I suppose I could go into research mode and carefully craft and calculate how to move forward. But instead, I'm here at this intersection in my life waiting for something small to inspire me, to lead the way -- an encouraging smile and a pat on the shoulder from a big brother or perhaps my irritation with a corporate dress code.  I'm sure someone will interpret this posting as a sign of passivity. But I don't see it that way. Some things in life don't make any sense at all and the right move is not always the most sensible one. I guess it's following your gut or dare I say your heart. While the thoughts swirl around in my head screaming at me, my heart whispers faintly. Sometimes if I'm too distracted, I miss it. I'm sure it will all crystallize eventually for me like the thesis of a paper or a story line for a script. Most likely it will be on a long run, headphones on listening to music as loud as my iPhone will allow. Because for me, music drowns out my head and ignites my soul. If I listen carefully, I'm sure the answer is out there... somewhere.

*****

Thank you so much for visiting Apple Moon and reading all the way to the end of my ramblings. Now that I've shared how I make big life decisions, I would love to hear how you've dealt with the crossroads in your life. I welcome your comments below.

The Other Side of the Spectrum

“I’m sure you want to know if he’s on the autism spectrum, ” the doctor said. I was

dumbstruck. I nodded. An autism spectrum disorder (ASD) was nowhere on my radar
but I didn’t let on my surprise. 

Instead, I sat through the rest of my son’s doctor’s appointment in a complete fog. How could I be so blindsided? I prided myself for being well informed, investigating all the possible reasons why our sweet, little boy never uttered a mama or dada by the age of 2; why he always fell short of meeting his milestones – turning over, crawling, walking, talking. I always tried to reassure myself that he was on his own developmental track and he would just grow out of it. He’d been given numerous diagnoses none of which explained our child and varied depending on the specialist -- verbal apraxia, sensory integration dysfunction, ADHD, even oppositional defiant disorder (ODD).

I became concerned when he started waving objects in front of his face, shaking his head side to side in a rhythmic way as he examined each piece, then lining them up in perfectly straight rows. I remember one morning I woke up late and found him in our kitchen, the lazy Susan cupboard ajar and all my 200 + spice jars lined up like little toy soldiers in a display covering every square inch of countertop space. He looked up at me with his big, beaming smile, so proud of his accomplishment. It was painstaking work and he must have been at it for quite some time while I was in deep slumber. Isolated experiences like this didn’t worry me but coupled with increasing anxiety and obsessive-compulsive tendencies, I knew something was not right. I didn’t understand why he had such a hard time at birthday parties, special outings to the zoo, a museum or a children’s show. Oftentimes, a loud noise or sudden applause would reduce him to a puddle of tears and he’d point frantically toward the exit for relief. My admiration for his strict adherence to his bedtime routine turned into worry when he would get upset at the slightest departure from our standard operating procedure.

Still, his doctor didn’t want to be too hasty with a diagnosis, deciding to observe his progress for another six months. I was grateful for that because it gave me time to digest the news and research ASD on my own. I began in earnest to understand what exactly this meant. Part of my incredulity was due to my own misunderstanding of the autism spectrum. Images of children on the spectrum in popular culture are very one-dimensional: a non-verbal child with poor eye contact who shuns physical contact and affection; a “little man/woman” who prefers to play by himself/herself than with others, always serious and sedate – a loner. This is what I understood an autism spectrum disorder to be.

My son, on the other hand, is nothing like this. He is lovable, bright, warm and full of an endless supply of kisses and hugs for his family and friends. He looks at you with his big, brown eyes and will even turn YOUR head towards HIM if you don’t return his gaze. He has a wicked sense of humor and an infectious giggle. He is always on the look out for someone to play with. Neighbors joke that our son’s official post is at the front door, face squished against the glass peering out, waiting for a friend or neighbor to make an appearance. My storm door, perpetually covered in face smudges and dirty handprints, is visible proof. 

So how could this be the face of autism? It didn’t make sense to me or frankly to many teachers, friends and family who all doubted the possibility of a spectrum disorder. But then in my research, the full breadth of the spectrum began to reveal itself. I plowed through website after website, printed out stacks of journal articles. I replaced Dr. Sears and What to Expect books on my shelves with books by Stanley Greenspan, Tony Attwood and Carol Gray. As a stay-at-home mom, I made it my job to learn all I could to best help our son. I reached out to parents of special needs online. I attended lectures once or twice a week trying to understand the latest research on autism or the best ways to manage a child with a social communication disorder. I felt like a student again with so much to learn but this time I was on a mission. On days I felt too exhausted, I would tell myself that I had no other choice. I had to keep going. My son’s future and happiness depended on it.

It wasn’t until I began meeting with other parents that I began to see the other side of the spectrum. I found myself in support groups empathizing with parents going through similar challenges. I met some of them for coffee and we shared our experiences. I took great comfort talking to other moms who truly understood what I was going through. 

And yet as much as we shared in common, the individualism of each child on the spectrum shines through in their stories. No two children on the spectrum are exactly alike; even among those who are high functioning, their strengths and challenges are unique and varied. 

After months of research, I grew accustomed to the possible ASD diagnoses: High Functioning Autism (HFA), Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). I took the doctor’s lead who seemed not to care exactly which term we used but saw the importance of conceptualizing him as a child on the spectrum so we could best meet his needs. Final confirmation took time – practically a year of observation by his doctors and a comprehensive evaluation by a multidisciplinary team of autism diagnosticians. And even then, we got second and third opinions all confirming a diagnosis of HFA. Oddly enough, with this firm diagnosis came a sense of relief. In my heart I’d accepted months earlier that my son had an autism disorder. Now that we had a diagnosis, I could move on to focusing on proper interventions and strategies.

Getting to a diagnosis was really secondary to getting our son the help he needed. Don’t get me wrong; it helped in very practical and immediate ways to access services through insurance and the county. But according to all my research on developmental delays, it is indisputable that, diagnosis or not, early intervention is key. The county provided ongoing help through early intervention services and special education. But still, in my gut I knew that they were not addressing some major areas of concern. This is when I realized how vital my role as a parent advocate was to my son’s well being. It took a lot of inner strength and belief in my instincts as a parent to go beyond the school system to look for help. I knew that something was not right even when his teachers dismissed my concerns. It is so important to believe that you are the true expert on your child. 

In our case, my son was exhibiting persistent behaviors at home that were either not exhibited in the classroom or not recognized as significant. That is why it is crucial for the parent and the educator to work in tandem to identify and give the child the proper supports to learn and grow. I love the analogy that another Growing Together guest blogger, Amy Bereton, PhD., makes of this relationship and I think it bears repeating. She compares the roles of teachers and parents in a child’s education to the roles of a mechanic and the car owner:

Generally speaking my mechanic’s knowledge of cars exceeds mine but I know the fine nuances of my car better than he does. I drive my car every day. I know when something is not quite right. I know its quirks, the storms it has weathered, where it has been and the kind of roads it spends most of its time on. My car runs best when my mechanic and I each bring our expert knowledge about my car to the table to make informed decisions about what my car needs.

Children make the most progress when families and educators collaborate in an effort to provide an engaging educational environment that offers rich relationships and meaningful learning opportunities for each child.

Bereton, Amy (2010) The Key to Children’s Learning Success, http://takomacooperativeschool.org.

While applicable to all, this is so true in the case of a special needs child. I would take this one step further and recommend adding the child’s private doctors and therapists to the mix because they play an integral role in this partnership. How wonderful would it be if parents, educators and the medical community could work together, sharing their expertise to benefit the child? 

I assembled the best team of doctors and therapists I could to supplement the services my son was getting in school. Not only did they validate my concerns but they also recognized my son’s unique gifts. Too often we get so wrapped up in focusing on a child’s deficits, we fail to see their strengths. My son exhibits an amazing attention to detail especially as it relates to cars. He loves maps and has a keen sense of direction, something his father proudly calls his son’s exceptional “bat radar.” Who knows where these interests will take him? I do know that if we celebrate and nurture the gifts of a special needs child, s/he will feel valued and accepted.

Remember the doctor who first suggested an ASD? He was the first inductee in my child’s team of experts. As shocked as I was that first meeting, I knew I liked him right off the bat. His first question for me at that initial evaluation was, “So tell me all the wonderful things about your son.” 

[This article first appeared on the Growing Together blog of the Takoma Park Cooperative School in June 2010. http://takomacooperativeschool.org/2010/06/the-other-side-of-the-spectrum/]