“I made green choices when you were gone! Where’s my special treat?”
Saturday night, I went out with some friends for a much needed girls’ night out. We saw the movie “Bridesmaids” (my first non-animated theater movie in 5 years) and stayed for dinner and drinks. I told Howie that if he made “green choices” while I was out, I’d bring him back a special treat.
I forgot. Maybe somewhere in the back of my mind I thought there was no way he’d have a good night, considering the state I left him in. But Tim said that after he got over the initial shock of his pizza looking “wrong”, he settled in and had a great night.
And now, at 7am, he wanted his treat. I had to think fast on my feet.
I tried to think of all the places I could have hidden a new Hot Wheels car. I tend to buy them in bulk, because…well, you just never know.
Suddenly, something caught my eye outside our front window.
Howie’s had a bit of an obsession with dandelions lately, specifically the ones that have turned white with seeds, ready to fly away in the wind. Whenever he sees one, we have to stop. In the yard. On a walk. On the way into school and leaving. He spots them from the car. He has to pick them and blow the seeds away until the flower is clean.
Right outside our window was one perfect white seeded dandelion. Just one.
“How about this special treat? Do you want to go out in your pajamas by yourself and get that dandelion? I’ll watch you from the window.”
I thought for sure he’d say no. Or beg me to come with him. He won’t even go up to his room alone, so I was afraid this would backfire. We’ve never let him out in the yard without one of us. I’ve always been too nervous that his impulses would take over and he’d get hurt.
Howie jumped up, looked out the window, and ran over to get his shoes.
“I can go out all by myself.” Not a question, but a statement.
I opened the door and he ran out front.
I stood at the window and watched him carefully approach the dandelion. He did not want to risk any potential breeze that would blow the seeds away until he was ready. He quickly pulled the dandelion out of the ground. And what followed was pure joy.
We see the dandelion as a weed, growing and invading our lawns and our flower beds.
My son sees them as something special. Something to set free and watch in wonder.
Once the dandelion was empty, he threw it back on the lawn, ran up to the door and knocked to come in.
“Did you like your special treat?”, I asked.
“YES! Thank you!”
His older brother Gerry came into the room and asked what was going on.
“Gerry! GERRY! I-went-outside-all-by-myself-in-my-pajamas-and-I-blew-all-the-seeds-away-and-then-I-came-back-inside. In my PAJAMAS!” He was so excited it all came out like one giant word.
“WOW!”, replied Gerry, his voice dripping with over-the-top enthusiasm in an effort to show me that he’s being a good big brother. “That’s so BRAVE of you.”
A big smile came over Howie’s face. “Yes,” he said. “I was brave. It was my special treat.”
“You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worry
You belong somewhere you feel free
You belong somewhere you feel free” – Wildflowers by Tom Petty
On Saturday, I met an old friend for the first time.
Several months ago, I struck up a friendship online with a fellow blogger Spectrummy Mummy. It happened very naturally. Our writing styles are similar. Two of our kids are the same age. We write about the same things.
She quickly became a confidante. Someone I could bounce ideas off of. Someone that I could e-mail at 4am with a question or complaint, and I knew she’d answer it. And “get it”. But we had never actually spoken to one another. Or connected in person.
So when I read that she was going to be moving to the other side of the world this summer, I knew we had to meet. Somehow.
We chose the day before Mother’s Day to meet in Boston. She would fly up, I would drive in. It would be our day to just be…us.
I had no idea what Spectrummy Mummy looked like or sounded like. However I know her kids’ names, their diagnoses, and tiny details of her daily life. The weird thing about blogging friendships is that you get to learn the most intimate of details about the other person, but nothing superficial. It’s the opposite of creating friendships in real life.
I had it all planned out. I was going to get to the airport early, complete with my homemade “Spectrummy Mummy” sign to find her at the airport, and then I’d whisk her into Boston on a grand sightseeing tour. She’s British, so I planned to show her all the battlefields in the city where we beat her country. I drove in to Boston, parked my car in a hotel garage, and headed for the bus to the airport.
And I missed it. Only in Boston will a bus drive away as you’re coming down the stairs to get on it.
So instead of my grand “Welcome to Boston” plan at the airport, I had to send her a text that I was going to be late. Of course.
We hugged at the airport like old friends, and headed back into the city to Faneuil Hall. The conversation flowed so easily. The sun was shining, and we grabbed a lemonade and sat on a park bench. And talked. And talked.
It was like we’ve known each other for years. We talked about our kids. Our husbands. Our families. Our pre-kid lives.
No awkward pauses. No kid interruptions. No phone calls from school. Nothing but just…us.
Halfway through our lemonades, I looked across the plaza. A group of well dressed people were gathering in front of the entrance to the marketplace. I knew why there were there. Our senior senator, Senator John Kerry, was having a town meeting inside. It was open to the public. All you had to do was sign in.
I had been told about this by some friends and it seemed like the perfect opportunity to do some autism awareness and advocacy. After all, we were already there. We were autism moms. And as I told my friends, you can take the moms away from their children with autism, but you can’t take the autism out of their kids. Or something like that.
The night before I had rehearsed my question for the Senator in my head.
Senator Kerry, can you state whether or not you’re committed to the reauthorization of the combating autism act? Can we talk more about our military families and the high incidence of autism amongst military children? Can you tell me why my friend’s husband has to leave her family again so soon after returning from a long tour? How can we help my other friend, who is at home putting together her son’s IEP while her husband is in Afghanistan? What supports can we give them so he’s not worried about his child at home while protecting his country?
I turned to Spectrummy Mummy. “Do you want to go in?”
“It’s up to you.”
I stood for a minute and watched the people file in.
I couldn’t do it.
I was definitely intimidated, that is true. But I was also tired of fighting. This was my one day that was just me and my friend. I couldn’t do it.
At that moment, I didn’t want to be an autism mom. I just wanted to be…me.
We ate at a restaurant where we didn’t care about the ingredients. We watched a street performer demonstrate the changing of the guard (which was quite amusing to Spectrummy Mummy, her being British and all). We debated the merits of spending $12 for a half dozen cookies. We took a picture with a Storm Trooper outside of Newbury Comics.
Spectrummy Mummy, Storm Trooper, Me. Need more proof that I'm not a "hugger"? Look at all that space between me and the Storm Trooper (photo credit: some random tourist)
When the skies opened up and the rain poured down, we ran back inside Quincy Market for cake and hot chocolate. And sat on the floor.
No worries about kids running off. No anxiety about the loud noises of the giant crowd taking refuge inside with us. Just…us.
My plan of taking Spectrummy Mummy on a tour of the city scrapped because of the rain, we headed over to the Seaport Hotel to meet up with Varda from The Squashed Bologna. She was there for a blogging conference, and it’s where I had parked my car. It seemed like the perfect last stop before taking my friend back to the airport. We sat in the hotel bar with Varda, drank a bottle of wine, and talked some more.
Varda and me. She looks much more rested than I do. (photo credit: Spectrummy Mummy)
Our only time constraint was getting to the airport on time for Spectrummy Mummy’s flight. We had nowhere else to be. We talked about our writing. Our plans for the future. Plans for our kid’s future. I debated spending $7 for chocolate covered pretzels.
And then, it was time to go.
A ten minute ride to the airport, three hugs goodbye, and my new/old friend was gone. And I fought back tears the whole ride home.
Online friendships can be tricky. When you read someone’s work for so long, you picture what they could be like in person. You’re so in awe of all that they do, and so inspired by what they write and say, you wonder if you could even be in the same room as them, let alone spend the day together. I have been lucky enough to meet some of my fellow autism blogging friends in recent months and now count them among my best friends. These people I can count on to have my back in an instant.
I can now include Spectrummy Mummy in that group of my best friends. The day we spent together was one of the best I had had in a long time. It was the first day in almost a year that I had just been…me.
There’s a special connection that autism moms have. An instant bond. An total understanding. And no matter our backgrounds or our beliefs or the specifics of our child’s diagnosis, we have a common ground. We “get it”. We’re here for each other. Helping each other to bring out the “just me”.
From down the street or across the globe.
(to read Spectrummy Mummy’s account of our visit together, click here for part one and here for part two)
“No one could ever know me
No one could ever see me
Seems you’re the only one who knows
What it’s like to be me
Someone to face the day with
Make it through all the rest with
Someone I’ll always laugh with
Even at my worst I’m best with you, yeah
It’s like you’re always stuck in second gear
When it hasn’t been your day, your week, your month,
or even your year…
I’ll be there for you
When the rain starts to pour
I’ll be there for you
Like I’ve been there before
I’ll be there for you
‘Cuz you’re there for me too…” – I’ll Be There For You by The Rembrandts
It’s time to put the blue light away, but I can’t do it.
It’s May 1st. April has come to an end and so has Autism Awareness Month. So I should be putting our big blue light away in the basement, labeled in a box so I can find it for next year.
But I’m not ready. Or more importantly, my son’s not ready.
My 5 year old Howie? He loves that blue light.
Four weeks ago, my husband took our oldest Gerry to Home Depot to buy the special blue bulbs for our front door lights. While there, Gerry had the idea of getting a big floodlight and shining it on to the house, so the whole house would be blue.
So every night for the past 30 days, our house turned blue at exactly 7pm.
In the beginning of the month, it was still dark outside at that time. The light would shine bright through the bay window in our front room. As the days went on, it became more and more light outside. And now, it turns on even when the spring sunshine is still coming through the window.
Tonight I thought back on these past 30 days. Days that brought us an awareness campaign that started with a conversation with Parents Magazine and ended with 31 amazing stories in their “Voices of Autism” series. A month that started with a plea to the White House to “Light It Up Blue” that ended with an autism summit like no other. Friends becoming activists just by walking into Home Depot. Friends sharing their stories for the very first time.
It started dark as a community searched for some common ground on what awareness meant. It’s ending as a community coming together asking to continue to conversation. A community knowing that autism awareness does not end just because the calendar changes. Every day is autism awareness day in our houses.
So no, I wasn’t ready to turn off our blue spotlight. But I thought I’d better ask the person who cared about it the most. My son.
Snuggling in bed tonight, I asked him if he thought it was time to turn off the big blue light outside. He doesn’t know why it’s on. He never asked. He doesn’t care. He just thinks it’s cool.
“No, Mom! Please leave the light on. Look – it makes my ceiling blue.”
I looked up. There were four squares of blue light in the middle of his ceiling. All month long, the light has been coming through his bedroom window, shining on him as he sleeps.
That was good enough for me.
Now is the time to keep the conversation going. We’ll continue to shine the light on autism in our family long after everyone else turns their lights off.
We’ll keep our light on for the 1 in 110 children affected by autism. And their siblings. And their grandparents, aunts, uncles, cousins and neighbors.
But most importantly, we’ll keep it on because my son asked me to.
My Boys In Blue...again
“This are the time to remember
Cause it will not last forever.
These are the days to hold onto
Cause we won’t although we’ll want to.
This is the time, but time is going to change.
You’ve given me the best of you,
And now I need the rest of you. ” – These Are The Times to Remember by Billy Joel