Be A Blessing

When Alexa gets out of the van in the afternoons, she happily walks with me into the house and says, “Then, take a ride.”  Whatever she decides to do first – have a snack or watch some youtube, she wants me to know that next we will be taking a ride, no negotiations.

I often drive with her to the beach and then make a big loop back to our town.  I know she likes this route because she says, “This way,” when we’re facing the beach and it’s time to turn.

On Monday, we were making our way back towards Amesbury when we stopped at a traffic light.  There was one car in front of us with two people in it, a boy and girl.  The boy was driving.   The girl had a short, blond ponytail.  I watched, transfixed, as the boy stopped the car and their two heads met in the middle for what turned out to be a lengthy and involved kiss.

I wondered how long I would have to wait behind these two lovebirds, but when the light turned green they broke apart and drove on.  Just as I was putting my foot on the gas pedal I heard Alexa say from the backseat, “Kiss the girl.”

I didn’t think she had seen the kiss, but obviously we both had been staring at the couple.  I laughed out loud.  What a perfect place to put that line from a song in “The Little Mermaid” movie.  “Come on and kiss the girl!”

I wanted to know so badly what she thought of that kiss, but the idea of her seeing it sort of pained me.  Those kids looked to be about her age.  Because of her autism, there is so much of life that she misses out on.  Usually we can go our own way in ignorant bliss, but sometimes there life is – staring you in the face when you’re stuck behind a car at a traffic light.

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I am grieving for my mom.  I miss her so much.  Those days spent with her in hospice haunt me.  Not “haunt” in a bad, scary way but in a tender, hurting way.  The gentle throbbing of a wounded heart.

Her absence seems so large.  When my dad died suddenly 16 months ago, it felt like he hung around for a little bit.  We felt a whisper of his presence for a while.  My mom, on the other hand, worked hard to get to heaven.  I remember watching her trying to focus her eyes as she reached her arm straight up, lifting her body only to fall back on the pillows.  “I can’t reach it,” she weakly said.  When she finally made it there, I think she never looked back.  I think she ran right in and kept on running as far as she could go.  That is why I don’t feel her around me.

My brothers and sisters and I decided to put a basket out at her Memorial Service filled with stamped, colorful cards.  My sister made a sign that said, “Be a Blessing.”  We wanted people to take a card and send it to someone like my mom had done so often – to encourage, to uplift, to be a blessing to someone else.

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Life does not pause for the grieving.  I am sitting here with mounds of paperwork because Alexa will be turning 22 on April 2nd.  This is a big birthday because it signifies a move out of the educational system and into the adult system of services.  It calls for a celebration, but I’m not sure I am up to having a big party yet.

Steve and I have been talking it over, trying to decide what to do.  Last night he came back from tucking her into bed and told me he had asked Alexa what she would like to do for her birthday.  He said, “Do you want to have a party?” “Party.  Yes.”  “Who would you like to come?” The first person she named was a caregiver that used to work for us but whom we haven’t seen for quite a while.

We’ve had wonderful people come into our lives through a family support program in our state.  We stay in touch with some but it is natural for their lives to change, for them to move on.  Usually I take it all in stride but last night it just seemed like one more reason to grieve – the fact that my daughter doesn’t know how to make friends of her own.  She has our family friends and people from the program who are paid.  I don’t mean to sound ungrateful but there is a huge part of life she is missing out on and sometimes I worry about whether or not she knows.

I’ve been hearing about other mothers who mourn this for their children.  One story was recently on the news.  A mom asked her Facebook friends to send her son who had autism a card for his birthday and added it was all right to “share.”  He got cards from all over the world.

I understand this request completely because we parents of children with autism need society to be aware that friendships rely on communication and our kids struggle hugely with that.  Alexa loves people and wants to communciate.  You can tell by the way her eyes dance when people make the effort to engage.

I wonder if it is time to be a blessing to more people with autism. I wonder if there should be a movement of sending them birthday cards. A beautiful symbol reaching across the communication gap saying that there is a world of friends who care.

If you want to be a blessing to Alexa, please send her a card for her birthday. Musical cards are her favorite. She keeps them in a special basket and opens them often. They produce the sweetest of smiles.

Alexa Watt
7 Old County Road
Amesbury, MA 01913

I will end this blog with these borrowed lines from Helen Keller:

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

Blessings upon blessings to you!

Flying the Friendly Skies

Flying the Friendly Skies.

Flying the Friendly Skies

I got a text from my friend yesterday evening saying she was late getting to the airport and her seat had been given to someone else.  Her husband and two great but very busy, hectic children were on the plane heading South.  She was sitting at the airport bar with a drink and good book, waiting for the next plane.  Her text ended with “Life is good.”

I texted back that hers was the best story I’ve heard in a long time.

I guess the next favorite story of its kind would be when I was talking on the phone with my sister as she was driving home from the bank.  She got home and we were still talking.  All of the sudden she started laughing hysterically.  It took her a while to get the words out.

All I could hear was her breathless voice gasping, “I’ve got the bank’s…..! I’ve got the bank’s…..!”

Imagining cops breaking into her house at any moment I yelled, “You’ve got the bank’s what?”

“I’ve got the bank’s drive-through thing!” she cried.

I guess when the cylinder came whirling back through the pipe to her car she just grabbed the cash still in the container and drove off.

We are a tad stressed out as a society aren’t we?

Sunday night I rushed, completely stressed, to pick up a friend and race down 95 for the 6:00 starting time of a de-stressing meditation hour and a half.  A couple years ago I took a class developed by Mass General Hospital that taught us how to use meditation to promote relaxation and health within the body.  Alexa’s doctor taught it.  He knows all about my stress so he thought taking his class was a good idea.  This was just a session to maintain our meditation practice.  Getting there on time about gave me a heart attack.

As it turns out, practice is required to handle stress differently than we normally do.

Alexa got to practice handling something stressful on Saturday.  It was quite a moving experience.  To understand the story, you have to know what stresses her out.  Forget previously studied and well known stressors like moving or getting a divorce.  The thing that completely stresses Alexa out to the highest possible degree is………

are you ready?  Here it comes: The thing that causes Alexa to break out into a clammy sweat of panic is:

open overhead compartments on an airplane.

I am telling you, she can’t handle them.  Her neck spins around faster than a possessed person if she spots an overhead compartment that is open on an airplane.  It’s bad enough to have all these people carrying suitcases on.

Every suitcase represents something out of place to Alexa’s way of thinking.  When we take a road trip to Michigan, we put all of our clothes into a plastic dresser so they are always put away in her mind.  On airplanes, not only are all these clothes not put away but, for the times during boarding and de-planing, the suitcases are not put away either.  It’s simply too much.

For the purpose of addressing issues like these, a radical, life-changing program was born in Boston: “Wings for Autism.”  Jennifer Robtoy from The Charles River Center saw a problem and developed this brilliant solution.  Designed for people of all ages who have autism, it allows them to practice all the steps required for air travel: going through security, boarding and being on a plane.

Boston’s Logan Airport actually closes down a couple gates for this program.  Jet Blue was the first to bring down an airplane for the practice session when it started.  Since then Delta and American have joined them.  Other airports are adopting the program as well, which is such incredible news.

Steve, Alexa and I arrived at Logan Airport with a packed suitcase and backpack on Saturday morning.  We were warmly greeted at the ticket counter and received our boarding passes.  Then it was security time.  The real TSA employees were a sight to see with their encouraging smiles for the nervous practicing travelers.

Then we waited as we normally would with a group of passengers who shared the same destination – The Island of Hope.  It was a dream that, if realized, could break down the intense, restrictive gates which held our lives.

Alexa tried to take someone else’s chocolate while we were waiting.  We quickly substituted some goodies from her backpack.  Really, there was no need because when they told us to walk down to Gate E4, beyond the real state police standing guard, we were greeted with a wide variety of breakfast goodies, cake, and a bag of some cute mementoes with a t-shirt.

I was taping Alexa singing as we were boarding the plane when the boy in front of her started backing up.  No problem – we understood.  We just walked around him, greeted the real flight attendants and found a seat.

Alexa’s head spun around to watch the overhead compartments, but she didn’t break into a sweat, I noticed.  She didn’t even have to start counting.  Wow.  This was going really well, so far.

Soon, we became enthralled with the flight attendants working the crowd.  Clearly, they wanted to give the full experience of flying but with some added perks.  They went through the safety instructions.  They passed out pins of wings like they were candy.  At one point a flight attendant broke out into a song.

“If you’re happy and you know it clap your hands!”  Clap – clap.  “If you’re happy and you know it clap your hands!”  Clap- clap.

I wondered what would happen to the world if every flight started off like this.

Still, that boy kept trying to get on the plane.  Once in a while, we’d see the flight attendants up at the front cheering for him as he managed to put one foot on the plane before quickly pulling it back.  Someone I spoke to later said they saw his sister crying, she wanted this so badly.

I understand that the flight crew intended to shut the plane’s doors to simulate a real flying experience.  But Delta’s flight crew would not shut this plane’s door because there was a boy out there putting one foot on and then off of the airplane.

He was practicing.

“We appreciate your patience,” the flight attendant announced through the plane’s intercom system.  “But we are waiting on a connecting passenger.”

If anyone wants a new definition of grace, I think that one is good.

Mostly, we were oblivious to other people’s struggles during our time on the plane. We heard some loud noises.  We briefly saw the crying face and twisting body of a young boy a few rows in front of us.  “We’ve been there,” Steve said as we watched in awe while the flight attendants assisted the family in whatever way they could.

“All these families want is to be able to sit on an airplane,” I thought.  That is all we wanted also.  Is that so much to ask?  To our surprise, Alexa was doing it.  She was handling the suitcases and over head compartments, although if anyone even slightly cracked one open, she noticed.

Our plane never did get off the ground, metaphorically speaking.  I heard our singing flight attendant say, “I think we just landed back in Boston.” People started lining up to get off.

The door never had fully closed.

One by one, we filed past the boy and his family/caregivers trying to get him to step further onto the plane.  One by one, we uttered assurances like, “He’s going to do it someday!”

And on our way out we passed posters advertising adventures to places yet unexplored.  I felt hope surge in my heart.  Maybe we could fly out to see family in the Midwest instead of that exhausting dresser-driven ride someday.

I only know that our successful arrival at The Island of Hope began with this One Open Door.

Lesson Learned from a Porta-Potty

I was following a porta-potty for a while yesterday on the highway.  Seriously, I was right behind it.  It’s door was facing me.  The brand name was United.  Quite obviously it was attached to a truck moving in the other direction.  Then this morning, when I hopped on a different highway, I found myself behind a little mail truck.  Also facing me, also attached to a larger truck which was moving the opposite way.

I began to wonder if there was a life lesson here.

Just to drive the point home (literally), when I was actually on my way home today I found myself staring at – well, I’m not sure what it was.  Some kind of lift vehicle or something.  But again, its headlights were facing towards me, facing backwards, attached to a larger truck which was moving forward.

There it is.

My friend Johanna’s daughter was having major surgery yesterday at Mass General Hospital.  Even with my new-found skill of driving to MGH, I still considered taking the train to sit with them for a while during the surgury.  I texted Johanna my plan before I went to bed.  In the morning I sent her a new text, “I always have more courage in the morning.  I am driving in.”  So with freshly baked cookies in hand, after getting Alexa on her school van, I drove off.

We sat there in the large waiting room and joked around.  At one point Johanna and I were in such a fit of giggles, I am sure if we had dared to glance up, the nice volunteer ladies would have given us their most stern, disapproving looks.  Later, in a more serious moment Johanna was trying to thank me for coming.  Please.  After all she has done for our family and for Alexa, it was the very least I could do.  “I just wasn’t sure I was the best person for the job,” I told her.  “I cry too easily in situations like this.”

I told her being in hospital waiting rooms brought me back to the 15 days we spent at the Boston Children’s Hospital when Alexa was 9 months old.  She had bacterial meningitis and almost died.  “Unfortunately,” I said, “I had to learn these things the hard way, from experience.  When you go through something with your child, you learn you need people to be there for you.”

After my father passed away in November, my siblings and I talked about what we learned from the experience: we would never let another friend or family member lose a loved one and not respond.  We would be there.  We would do something because now we understood even the smallest acts of kindness can mean A LOT.

On this Valentine’s Day I woke up praying for Johanna’s daughter.  As Alexa climbed on board the van I was still thinking about what I’ve learned looking backwards.  And I thought about the record I would like to finally straighten out.

What you go through in life does not make you stronger.  (OK, yes, a certain amount of grit and determination must be acquired.)  What you go through in life makes you weaker, but in all the right ways.  It breaks your heart.  Your heart becomes softer.  Some part of your heart holds on to what you’ve been through.  Your body also remembers.  Your hand instinctively reaches out.  It tries to help pull things forward.

I don’t think there could be a better reminder of compassion than a forward-facing truck carrying a porta-potty backwards, do you?