From the Mountaintop Archives

Key Campaign, Part Three

Exhausted, but home, where Elias ,the mover, finally rests.

And despite the crazy schedule, we would do it again.

And again.

And again.

Till there is no longer a need to march. Till acceptance of disabilities is as common as air.

As taken for granted as breath.

The Key Campaign, Part Two

Elias discovers the ramp to the stage during the four hour legislative orientation and promptly crawls up it. And down it. And up it. I scoop him up to return to our seat in the back of the room.  Walker. ..walker, he says pointing at his rolling device. How can I refuse?

Elias loudly rolls across the hardwood floors and heads straight for the door. This is my orientation to the Key Campaign, chasing Elias past kind smiles and head nods.

During our two hour break in the hotel room, when I could really use a nap, he opens and closes every door and drawer. He unrolls the toilet paper and pulls out the tissue. When I ban him from the bathroom he turns the TV on and off. Despite my efforts to turn down the volume, every time it is turned off it returns to a decimal loud enough for the whole hall to hear. I close my eyes.

Elias reaches the hotel room door and pulls the handle down to open it. I  bolt upright when I recognize the different noise. By the time I reach him, he is half way down the hall to the elevator. Ebator... ebator... ebator

At the dinner, I follow him with a plate of lasagna trying to convince him to slow down for a minute to eat. He refuses every offer. Ramp...up du ramp, he says and wiggles free every time I try to hold him close.

Elias does not need toys.

Not when there is a new place to explore. And he may be a three year old crawler but he is one of the fastest crawlers I've seen.

(This after over a year of dragging himself across the floor military style--when I thought I would never see him learn to crawl.)

While I'm following Elias out of the dinner as he crawls towards the hallway a woman approaches me and says, "I was told you may be willing to tell your story tomorrow and testify at the Legislative Hearing." I had not planned on speaking in either of the two the large session, only in the smaller individual meetings with the senators and representatives.

"With or without Elias?...As you can see he doesn't really like to be still," I say with a smile.

We make a plan for Elias and I to stand in the back of the room by the open doorway so he can play in the hallway until it is my turn to speak.

I leave the dinner early so I can think about what I want to say. I've been asked to testify about one of the four main priorities of the key campaign: Early Intervention/ Infant learning Programs.

Our life for the past three years.

I bring Elias back to the hotel and after three extra elevator rides we retire to our room. He's sound asleep within an hour.

I read through our handbook to make sure my story aligns with the advocacy efforts of the campaign. We are asking the legislature to increase funding by a million dollars for Early Intervention / Infant Learning programs so that no families have to wait for critical services. Research shows that every dollar invested into these programs saves between 4 and 17 dollars in future services. I try to memorize the key words for the campaign and then decide to just speak from my heart.

No written speech. No notes. I turn the light off before 9:00.

The Senate meeting starts at 8:00 am. Elias and I arrive at 7:15 to allow him time to explore. We ride the elevator five or six times. He crawls up and down the yong yong hawway.

And when it is our turn to speak, he sits perfectly still on my lap for the entire time. Not one wiggle. Not one complaint.

I can't tell you exactly what I said but I started by showing Elias's first diaper and his "lamby" who was once bigger than him.

I said I didn't plan to be here but Elias had different plans. And if it weren't for the coordinated efforts and supports of Early Intervention/Infant learning Program we certainly wouldn't be sitting here today.

Every parent struggles. We wonder if we are doing enough. Or too much. We worry about our babies. When you have a child with complex medical issues those worries multiply.

I can not express how helpful it was to have professional educators and therapists come into our house each week and tell us, "You're doing a good job."

"You are good parents."

Our family is stronger because of this support.

And this does not even account for the leaps and strides that Elias has made. A legally blind physically challenged boy who tore through the State House. He brought Senators and Representatives out of their offices to interact with him. "I just had to see who was making those cute noises."

"Wanted to say hi to the speedy crawler."

And during our small group meetings with individual members of the legislature he reached for the keyboard of Senator French's computer. He tried to grab the stack of papers on the desk. He almost spilled the blue mug half filled with coffee. He tried to escape out the door. 

Elias gave a face to the benefits of early intervention, one that is hard to deny.

And as for me, more than getting the opportunity to share our story, the highlight of the trip was hearing everyone else's.

Realizing how much our family has despite our challenges. And knowing we are not alone.

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The Key Campaign, Part One

The Flight

It started at the gate. Just a sense that I wasn't the only one traveling to Juneau for the Key Campaign. And it wasn't just the buttons. It was the presence of numerous people with developmental disabilities, all waiting for the same plane.

And unlike the girl I use to be who would stare and look away.  Stare and look away. I felt comfortable standing in their midst, in our midst, with Elias and his walker.

Elias, who woke up talking about riding on the "bigga bigga airpane", literally bounced with excitement. He kicked his legs and waved his arms as I strolled him through the airport.

I gate-checked his stroller and walker and carried him in a backpack to load the plane, while holding a second backpack in my hands. (We all become bag ladies as mamas-- but when you have a son who can not stand independently, the juggling becomes more complex.)

I sat in the middle and put Elias in the window seat where he promptly held onto the chair back to stand and smiled at the people in the row behind us. Airpane, airpane, he announced. And then bounced some more.

A heavy-set man sat in the aisle next to us and asked if we were traveling to Juneau for the campaign. I told him it was our first time. He then asked me, "What is his disibility?" in the same way I might ask a flying companion, "Where are your from?" or "What do you do?"

No big deal.

Just a question.

Part of life.

I mustered the courage to ask him what his disability was and he told me he had Asperger's, a form of Autism Spectrum Disorder, and that he planned on advocating for early intervention to support children with his same diagnosis.

From two seats in front of me I heard, "We're hoping to find an aid...."

From behind me I heard a mom say, "Well he's been checked for symptoms..."

And I realized I entered a land where there is no secrecy and no shame. Where living with a disability is as normal as not. And where there is great strength in numbers. Unity. Advocacy. Community.

During take off, my flight companion taught me how to feel the difference between 3 and 4 G's. "You know what a G is right?" he asked.

"No," I confessed. He explained the force of gravity and that the plane needed to reach 5G to rise and he pointed out each shift in G's as we climbed.

Way more interesting than discussing hometowns or career paths.

His friend across the aisle gave Elias one of his small Tonka trucks to play with and offered us a piece of his Bazooka bubble gum. A young man who later revealed to me that he has had not one but four brain surgeries, all when he was a child. He showed me the bump on his head where the drain was placed. I put his hand on Elias's bump, located in the exact same place, and we all bounced with excitement.

Later he sang me lyrics to the country song "Don't Take the Girl" and gave me his small bag of Sweet Onion potato chips.

And all I could think was we have so much more in common than we know.

Adventures in Advocacy

Imagine if someone took your baby from you.

Either at the hospital soon after birth or months or years later. Told you that you were not fit to care for your child. That he needed to be sent away. She would be better off without you.

Just imagine...

Thank god as a society we have moved from state run institutions for people with developmental disabilities to community based programs that support families.

I can not stomach the alternative. Can not fathom the possibility of losing my son.

The last institution in Alaska closed in 1996.

1996!

We're not talking ancient history here.

And it closed thanks, in part, to the Key Campaign, a grassroots organization and statewide coalition of people who believed in the power and neccessity of community for all human beings.

They started gathering on the capital steps in 1988 and they continue to meet there every March to advocate for increased funding to support community based programs and the abolition of The Waiting List.

The human list of people waiting for services.

Waiting.

Waiting.

And still waiting.

Well...

The Key Campaign wants to change this. And Elias and I were nominated to join the party on the steps.

We fly to Juneau on Tuesday--ooh, I guess I should say tomorrow--to advocate, march and tell our story.

To talk to our legislatures to make sure that the government continues to fund programs that support families.

So their babies can stay right where they belong.

With their family.

With their community.

Out in the open for all to see and fall in love with and learn to accept and not fear.

I just hope the suits are prepared for a blue eyed boy who will think the State House is his personal playground.




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I Love You Just the Way You Are

This is the title of a book I read to Elias a lot. By Virginia Miller, it's about two bears, a little bear named Bartholomew who feels awfully grumpy--his legs are too stumpy, his porridge too lumpy, his tummy too plumpy, and he is too small-- and the ever patient George, his Dad, who responds to every complaint with kindness.

Last night after reading it, Elias and I cuddled and then he told me he was ready to lie down. I put his blanket over him and rested my hand on his head. I told him I loved him and I would see him in the morning.

Elias replied: I yuv you ust de way you are.

He's never been able to say the full title before and for him to say it in context just proves that he is the ever patient one who always helps his Mom to feel better.

(Thank you all for your insightful comments on my last post and for reminding me that all you can do is all you can do and all you can do is enough.)