There is Blessing Here

When people who are sitting directly in front of us at church resist the temptation to turn around and stare at us, we notice.   Alexa keeps up a steady stream of excited sounds when she’s in church and we’ve grown used to people turning around to see who is making all that racket.  When they don’t, it’s a pleasant surprise.

For a few months now, I’ve been noticing a group of young people from Korea who tend to sit around us in the sanctuary.  Apparently they like to sit towards the back also. I’ve watched their heads and marveled at how they just keep staring straight ahead no matter what kind of noise is coming from behind.

This was never so obvious as on Christmas Eve.  Alexa stayed in for the whole service.  She was terribly excited and altered between loudly exclaiming, “Merry Christmas!” and “Santa Claus!”  I had to remind myself that keeping quiet when she is excited is almost physically impossible for Alexa to do.  I tried telling her, “That’s too loud!  Whisper!” and she did try but it came out more like a dramatic stage whisper, “That’s too loud!  That’s too loud!  Whisper!!!”

Out of desperation, I came up with a little ditty, “Let’s practice being quiet – that means making no noise.”  As I spoke the words slowly into her ear, she turned to look at me with dancing eyes, bobbing her head to the rhythm of my new little song.  It was working so I repeated it a few more times.  She seemed enthralled.  I stopped.  She exclaimed, “Merry Christmas!  Santa Claus!”

At the end of the sermon I touched one of the people from Korea on the shoulder.  “God has a special blessing for people who put up with sitting in front of my noisy daughter, you know,” I said and they smiled sweetly. I thought, “No, I really think he does.”

Intrigued about their polite behavior, I stopped one of the women as she was leaving and asked about the group.  She explained that they are mostly students and that they live in community here.  I asked if it would be appropriate for them to come to our house for dinner sometime.  She got a concerned look on her face, “You mean all of us?” “Well, yes!” I replied.  “But there are 20!”  “I think we could handle that,” I told her.  “I would just really like to hear your story.”  She smiled and softly said, “We’d like to hear your story too.”

All I knew was that her name was Claire.  For the next few Sundays I looked for Claire but couldn’t find her.  I gave two different Korean guys my name and number and asked for them to have her call.  Each time, I told them we wanted to have them over for dinner.  Each time, they got a horrified look on their face and said, “But we have 20 people!”  “Well, I’m getting a little bit afraid, the more you point that out, but I really think we can handle it.”

Finally Claire and I connected.  So on this past Sunday after church, smack in between two snow storms, 20 beautiful people trudged through our garage and up our basement stairs.  (Because huge snow drifts covered all other entrances, it was the only way into our house.)

They came in and spread out, curiously exploring every room.  “This house looks like an advertisement for Pottery Barn!” one of them exclaimed.  Another commented, “Oh look! There is a fire in the place!”  One person carried in a huge tin of giant baked potatoes.  Another brought in a second batch.  One person had cookies, one chips.  Claire came up with a large bouquet of beautiful flowers in her hand.  Many, many times we heard, “Thanks for having us!”

Somehow we got everyone together in the dining room.  In keeping with our family’s tradition we held hands and sang the Doxology.

“Praise God, from whom all blessings flow
Praise Him, all creatures here below
Praise Him above, ye heavenly host
Praise Father, Son, and Holy Ghost.
Amen.”

After we started eating, Greg Pak and his wife Susan arrived with their two small children.  Greg has been the interim preacher at our church – we’re big fans of his – and he had to preach that morning so they were late.  They, like the others, began to pour out their appreciation to us for having them.

After repeatedly hearing that Steve made the best chicken chili and that I made the best chocolate chip cookies, we began to feel like we were floating on air right inside our little home, we were so uplifted.  Claire took me aside and told me that the way my eyes look when I am with Alexa touches her heart as a mother.  The kids were in awe of Steve and what he had done to the house.

Later everyone found a seat in the living room.  At Claire’s suggestion we went around and introduced ourselves.  The supporting adults were a well-educated, impressive group, the kids utterly charming.  One girl shyly told us that tomorrow was her birthday.  We loudly sang her the birthday song.  We asked each other questions and laughed at honest answers.  They wanted to know more about Alexa – that what she has is autism and that her special talent is twirling sticks.  We wanted to know more about them – that they do like snow because of snow days and that there is a 13 hour time difference between here and Korea.

We learned that Claire and her husband (who was in China that week) had started the organization, BNM – Building the Next Millennium.  Kids from Korea come to get a more balanced education – not just the strict academic focus which is the norm in their country.  Many of them were involved in sports and art.  They all go home during the summer months but return for the school year.

It isn’t easy but it is rewarding work.  BNM wants to be more than just another Christian organization.  They want to build something that lasts, that has a positive influence for generations to come.

I noticed that Alexa was looking tired and she was starting to make manic noises.  “Could we sing a song together?” I asked.  “Alexa would really love that.”

Greg sat down and started playing a song we didn’t know.  Suddenly they all began singing in Korean and as they sang, each person held out both of their hands towards us.  As we looked around the room trying to take it all in, Claire slipped out of her chair and came over to where the three of us were sitting.  She started whispering the words of the song, “Everyone is born to be a blessing, everyone is born to be loved, this is our blessing to you.”  Tears trickled down my face.

We hugged and made promises to continue our new-found friendships.  They put their coats on and trampled back down the stairs to the waiting pile of boots.  Greg hung back for a moment.  “You know,” he said to Steve and me, “there is a Biblical principle at work here.  Where there is suffering, God promises to at least match that amount of suffering with blessing.  There is great blessing here.”

I was surprised that I felt relief when Greg used the word, “suffering.”  He said it as a matter of fact and it is.  Just look into Alexa’s face when she is anxious and confused.  Yes, there is suffering here.

You would expect the result of suffering to be constriction, the closing off of the human spirit.  But I’ve learned that suffering can do the opposite – it can have the effect of opening and expansion.  I’ve tried to understand why that is.

Just looking at our little family, I see that where there is suffering, there is also need.  People who have need in their lives have to stay open for divine or any other kind of help to come.  Any words of encouragement or acts of support, any sharing of the things that truly matter in this life.  We need wide pathways for love and compassion to travel on.

A long time ago, we asked a young couple with two children who were new in town to come for dinner.  Years later, the woman told me with tears in her eyes it was something she will never forget.  I asked her why and she told me, “Please don’t take this the wrong way Ali, but you had every reason not to invite us.  Still, you were the very first ones who did.”

Without realizing it, we had already learned what Greg pointed out before he left.  Where there is suffering, God at least matches it with blessing.  And all we can do with blessing is let it flow.

Under Construction

My brother Mark is a great storyteller.  I could listen to him telling stories until the cows come home.  I say that because Mark and Vera live in Indiana and recently bought a farm.

The other night he called.  “You won’t believe the meeting I just went to!”  I settled myself into a cozy chair.

I’m not really clear on how Mark got invited to this meeting in the first place. He was talking to his friend, an Amish farmer, and the conversation turned towards goat’s milk and cheese, and before you know it, he was invited to an important meeting about goats that very night.

So Mark picked up his friend and they drove to a house where another Amish farmer lived, and before you know it, there were twenty other Amish farmers in the room.

When Mark tells a story, he fills it up with small but important details.  Like, at first he didn’t shake the women’s hands because he thought that was proper etiquette, but then after watching the other men shake their hands he went back and shook the women’s hands after all.

There he was, the only “English” person among all these Amish farmers at a meeting with the one stipulation of being interested in goats.  At first the farmer who had invited Mark wondered if he had misstepped by inviting this non-Amish man who did not actually own any goats to the evening’s event, but it became clear that he was being well-received.

According to Mark, the host had a voice as deep as James Earl Jones and with his low rumbling voice he told the group he had just been to the hardware store.  While he was there, the conversation turned towards goats.  They were talking about a company who makes machinery for the goat business, and this man asked if they could look the company up on the store’s computer since Amish people don’t have computers in their homes.

“Now Mark,” the James-Earl-Jones voice boomed out, “I’m not sure but I think it is really bad when you look up something on the computer and it says,’Under Construction.’ What do you think Mark?  That’s bad isn’t it – is that really bad?”

“Well,” Mark answered, trying to choose his words carefully.  “I wouldn’t say that it’s really bad when a website says ‘Under Construction’ but it does sort of make you go ‘hmmmm.’”

“Oh I like that Mark!” the host thundered and putting one finger on the side of his face tried it out for himself, “Hmmmm.”

Before the night was over they were planning a road trip to Iowa with my brother driving a large rented van.

 

*************

 

I feel like my life, in some literal and figurative ways, has been under construction lately.  Like I’ve been spending a lot of time just looking around, going “hmmmm.”

I think after you go through a death of someone dear, it takes a while to choose to be among the living again.  Every day I get up and part of me looks back, missing my mom.  The other part of me tries to look forward.  It is this part that struggles, but I think it’s normal that it’s hard.  I’m told that I really will feel better after time.

The path to healing and the secret of knowing where to look is something I am learning from Alexa.  I’ve always said she’s my most profound teacher.

It is 6:59 pm, her shower is done and she and I are sitting on the sofa.  She’s got her PJs on.  I hear her say “Goodnight Brian” to the anchor of NBC News.  She points to the remote control and tells me “Wheel of Fortune”, and I turn the channel from 7 to 4.  I reach over to get a blanket so that we can get warm and snuggle together.  When Alexa sees the blanket she throws her legs up over mine and leans back against the pillows.  I put the blanket over both of us.  Our heads draw together and she looks into my eyes.

I have learned to hold this look until her eyes break away which is after quite a long time usually.  I see both her eyes dance from one of my pupils to the other and then back to the first one again.  She is grinning and makes a laughing kind of sound.  There are no words being said between us because our eyes are saying everything.  “Joy, joy, joy,” say her eyes.  “Love, love, love,” answers mine.

Somewhere in the deepest part of my being, someone whispers, “Just look at now.”  These are good days – perhaps even the best – because we are together.  Maybe it’s not about looking backwards or forwards but learning to just look at now.

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.

****************

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.

****************

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!

My Authentically Awesome Day Spent With Noah

Noah is a thirteen year old friend of mine.  He is at a point of transition in his life which has put him between schools with a solid week off.  His mom, my good friend, lined up some people to do things with him while she was at work and asked if I could check in on Wednesday.

When she asked me to do this I had a fleeting moment of wishing Noah was a girl.  I know what to do with girls.  I mean, I can always take them shopping.  I don’t know anything about 13 year old boys except what I can remember from my brothers.  Teenage boys are completely out of my comfort zone.

This morning (Wednesday) I googled, “Fun activities for 13 year old boys.” Up popped the usual stuff – activities even I would have thought of.  They were all too expensive or involved long periods of time spent out doors.  I glanced through the window.  It was snowing again.  I had to think of something else.

Mindful of how inadequate I felt about spending time with Noah, I got a piece of paper and made a list:

“beach

hardware store

location of Noah’s choice

Mission: locate 3 items that describe who we are.

(do not talk about it yet)

McDonalds: eat lunch and tell each other the “what and why” of what we got.”

When Noah got in my car, I handed him the paper, wondering if he would think the whole thing was lame.  “This is our mission if you choose to accept it,” I explained. He read the list and shrugged. “OK,” he said.

On the way to the beach we chatted about how his mom does not approve of McDonalds.  I told him I was aware of that and it could be the very reason I chose that place to eat.  I asked him if anyone had ever taken him there before.  Only his grandmother in Florida.  My plan was wicked but perfect.  Noah respectfully suggested, “Maybe we shouldn’t tell my mom.” “I think we should take a picture of you eating and send it to her!” I replied gleefully.  Noah laughed.  “What time is lunch?” he asked.  “Ummm, 12:15?” I said.  That meant we had about an hour to find our things.  Noah and I agreed having a deadline made it more fun, and 12:15 sounded better than 12:30.

We noted that not very many people were outside and the blustering beach parking lot was practically empty.  “Man, we are really nuts,” I said.  “Are you ready?  Let’s make this quick!”

We yelled as we ran down towards the ocean.  Yelling also added to the fun factor somehow.  I saw a small piece of driftwood and lifted it out of the sand and snow to inspect it more closely.  Yes, this would do just fine.  I ran out to Noah who had stopped at the shoreline with waves furiously crashing around him.  He stooped down and picked up a handful of shells.

“Done?” “Done!  Let’s go!”

We ran back to the car and cranked the heat.

“I could say a really mean joke about that piece of driftwood you got but I won’t,” Noah said.  “Oh come on, tell me!”  “It’s really mean,” he warned.  “I can handle it – tell me!” I insisted.

“You got that piece of driftwood because it’s old but light – it’s been floating around in the ocean for years.”  I pretended to clutch at my heart.  “You’re killing me here!” I hollered.  “I told you it was mean,” he said.  “But there was a compliment in there too!  I said it was light and so it could float and stay on top of things!”  “Yeah, right,” I grumbled.  “I know.  I’m old.”  I told him exactly how old I was.  He told me he didn’t think I was that old which made me feel better but only slightly.

Next on the list was Home Depot.  “You’ll probably guess what I’m going for first,” I said.  “Paint?” Noah asked.  I nodded.  “Now let me say a word about price.  Whatever we buy has to be 5 bucks or less – preferably less, as in free.”  Noah said he was thinking he should get a snow blower.

When we got in the store he pointed to a rider lawn mower.  “Very funny,” I told him.

I went straight to the paint chips and then looked at the packets of seeds.  Noah met me at the front.  “What did you get?” I asked.  He pulled out a lighter.  I wondered if I had thought this activity through enough as we went to pay.

I asked Noah where we were going next since it was his choice.  He told me to drive to Walmart.  The whole process was repeated.  We ran back to the car.  It was 12:13.  McDonald’s was a few minutes away but we decided we were close enough to say we had reached our goal.

The poor boy said something about ordering a whopper.  I told him that whoppers were at Burger King.  We both stood in the restaurant aghast as we saw the calorie count listed next to each item.  “I don’t think I should order a hamburger…” he said, clearly distrusting the beef.  “I guess I’ll get some chicken nuggets,” he offered only when I told him a frappe was not a good lunch choice.

“OK, let’s start!” Noah said when we sat down with our food.  I thought he meant digging into the fries but he was looking at the bag of stuff we’d brought in.

He instructed me to go first.  I hauled out my piece of driftwood.  “Look at this – do you see anything in it?” I asked.  Noah guessed, “Something beautiful?” “Yes,” I answered. “But more specifically, I see a deer.  Now do you see it?” He shook his head.  I pointed to the nose and antlers.  “This says who I am because I like to see beauty in different things – you know, not just the obvious.”  “Cool,” Noah answered.  He pulled out his shells from the bag.

“These shells are me because they are strong and beautiful but resistant.  They get pounded by the waves but still, they continue to prevail.”  I stared at him with my mouth open.  “Noah!  That is profound!  We’ve got to write this stuff down!”  I searched through my purse for a piece of paper.  Noah handed me his napkin and I jotted down some notes.

Next was my paint chip.  I pointed to a color called ‘Cantaloupe Slice.’  “Peach has been my favorite color for a really long time.  It is me because it’s part of orange – a strong, happy color but it’s toned down a bit, you know?  Strong but also soft.”  Noah nodded his approval and pulled out his lighter.

“Well, at first glance this seems fiery,” he said, “Not to mention dangerous,” I thought.  Noah went on, “But when you take it apart, it’s complex and cool inside.  That’s me.  I might seem all fiery but inside I’m complex and cool.” Later he told me how he knew this – he had actually taken a lighter apart one time.

“Noah, you are amazing,” I said.

I grabbed what I bought at Walmart.  It was a plastic bag of roots.  “Well, I was looking for tulip bulbs because I am Dutch.”  Noah asked me how the two things were connected and I explained that tulips were grown in the Netherlands.  “But you are supposed to plant tulips in the fall so I had to go to Plan B.  See what these are?  Bleeding hearts.  My heart is….” Noah began to roll his eyes.  “Wait!” I said.  “I got bleeding hearts because my mom died and I am sad.  That is a good reason, don’t you think?” He agreed solemnly that it was a very good reason.

Noah pulled out his Walmart purchase – nerf gun bullets.  “This is me because I might not always start the trouble with my sister but I am always a part of it.  You know, like I might not be the one who has the idea to jump off a bridge, but I would be the one to think of doing a flip while jumping off the bridge.” I wrote down his words.  “Attempt to do a flip,” he corrected himself.

I sat back.  I had taken this kid to McDonald’s and bought him a lighter and nerf bullets.  Now we were talking about jumping off bridges.  I really wasn’t looking very good at this point.  “Do you think your mom is going to be mad at me for buying you a lighter?” I asked and he said, “No. We’ve got lots at home.”

As we got back into the car I told him about the time my brother blew up a frog.  We got serious for a minute and I asked him if he was worried about the whole school situation.  He said he thought things would turn out the way they were meant to.  I told him I thought so too.  He asked me if I wanted to hear a really great quote he found from Albert Einstein. “Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

“Wow,” I said.  “That is a great quote for everyone,” thinking of how I tend to dwell on the things I cannot do.

I dropped Noah off back at his house.  “Thanks Ali!  I had fun!” He said as he got out of the car.  “So did I, Noah!  Remember, next time you plan the activity!” I told him, wondering what would happen if I spent more time with people who I considered out of my comfort zone. I was pretty sure I’d be a better person if Noah was any indication of what we had to learn from each other.

Later that day I got a call from his mom, my good friend.  “I can’t believe you took my son to McDonald’s!!!!!” she began.

 

Pretty Girl

Yesterday morning at 8:20 I was sitting, bleary eyed in an office chair outside of Dr. Prince’s office.  Alexa was standing across from me.  She was chattering happily.

Not with words I could identify about anything specific, just cheerful, happy words.

Suddenly she reached up to touch the little clips holding back her thick, wavy hair sweeping to one side.  I watched her as she tried to pull them out, intrigued.  It looked like she was primping.  I never saw her primp before.

“Pretty girl,” she said.

I stood up and helped her get the clips out.  “Yes, you are a pretty girl,” I told her, my fingers smoothing back her hair.

“Pretty girl,” she said again and smiled.

I put the clips back in and she reached up to touch them, this time leaving them in, just checking on their placement, perhaps.

Alexa and I had a tough week.  We experienced some set backs.  Hormones were raging and things are always changing and an intense episode of aggression happened on Tuesday afternoon.  Alexa became anxious when I was writing something down and I just didn’t stop fast enough.

I was pretty distraught.  My friend Suzanne came over to be with Lex and me until Steve got home.  Lex was happy again when Suzanne came through the door, but my face was red from crying.  She ate burnt pizza with us, helped me start a knitting project and had us all laughing again in no time.

She had just gotten back from a missions trip to Mexico with our church which deeply moved her.  Steve and I teased, “Our family is all the missions trip you need.”

Later that evening Dr. Prince called.  “I can’t believe I let that happen!” I told him.  “I am so well trained!”  “Ali, this has nothing to do with how well trained you are,” he said.  “All we can do is set the right conditions for health to take place – we can’t make it happen.  That is as true for Autism as it is for Epilepsy or Diabetes or any other medical situation.  Things happen and they are out of our control.”

As I was putting away my botched knitting work and checking my email one more time, Steve was watching “America’s Got Talent”.  I heard them questioning a contestant and then heard the contestant start to sing.  I stopped what I was doing and walked back into the living room.  Steve and I stared, spell bound, as this big burly guy sang a song he loves to sing to his wife.  “Wow,” we said to each other with tears in our eyes.

I went into the bathroom to get ready for bed.  I washed my face, still humming the tune.  Steve and I read like we always do before turning off the lights.  He fell asleep immediately but sleep eluded me.  I got up, got a drink of water and realized the words of that song were still playing in my head.  I tiptoed into Alexa’s room and got under the covers.  I felt the sturdiness of her warm body against my back and felt her gentle breath on my neck and let a few of my tears fall on her pillow.

The words of the song were my words for Alexa tonight.  The words of the song were God’s words for me.  Whatever difficulty of life we were caught up in at the moment, love would always have a tighter hold.

Make You Feel My Love
by Bob Dylan

When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven’t made your mind up yet
But I would never do you wrong
I’ve known it from the moment that we met
No doubt in my mind where you belong

I’d go hungry, I’d go black and blue
I’d go crawling down the avenue
There’s nothing that I wouldn’t do
To make you feel my love

The storms are raging on the rollin’ sea
And on the highway of regret
The winds of change are blowing wild and free
You ain’t seen nothing like me yet

I could make you happy, make your dreams come true
Nothing that I wouldn’t do
Go to the ends of the earth for you
To make you feel my love.

Making a Memory

Steve’s eighty-something parents are arriving here tomorrow.  We can’t wait.  Alexa keeps saying, “Grandpa and Grandma!  Grandpa and Grandma!”

They know to come when she is still at her day program, Coastal Connections.  They know they have to quickly put their suitcases in the bedroom before she gets home.  We will remind them about putting away any stray plastic or paper bags.

I’ve been watching her this week, trying to gauge how she will do with this upset in the household.  Last night I noticed she’s been leaving the canvas basket filled with her CD’s and two car sticks in our living room, touching the cabinet in which the other CD’s are stored.  This breaks my heart.

Usually she keeps this basket close to her, in her bedroom.  The two car sticks are the two small cuts of wooden curtain rods left over from our dining room.  (Alexa twirls heavy sticks in a fascinating rhythm – it is her special gift in life.  These particular sticks were deemed safe for the car – “car sticks”.) Recently, she became aware that her favorite Karaoke  CD’s were kept in the living room and now I can see that she is torn about where her CD basket really belongs.

“Hey Alexa, do you want to keep the Karaoke CD’s in your room?”  I suggested.  She answered, “No!”

“Why not?” I asked.  She echoed, “Why not?”

“Yeah, why not?” I insisted, thinking it was a really good idea.

But she stood there flipping a Karaoke CD in her hand and repeated her favorite go-to answer, “No!”

Oh dear.   She’s up to re-arranging things.  I wonder if this is precisely  how my friends feel when I come over.

Alexa’s world is about to be upturned.  I know from experience it will be stressful but it will be worth it.  Steve and I will guard his dear, aging parents from Alexa as they try to take some clothes from the bedroom to the bathroom (a very short distance).  We will count with Alexa at various times as they gather up their things.  We will try to distract her when they are looking for some object that can’t be found.

Because there is the flip side.

We know that Grandpa will make his funny noises – created especially for Alexa.  We know that she will belly-laugh at this.  We know that come Sunday morning, Grandma will be ready before we are, playing hymns on our piano.  Alexa will stand watching her, enthralled.  We know that cocktails will be lifted as we celebrate being together, “Cheers!”  We know that getting stuck in beach traffic on a late Saturday afternoon won’t be a problem with four adults singing old songs to Alexa as long as we’re in the car.

Ants can keep on marching for quite some time, you know.

There is a cost of being together but it is worth it.  Since when doesn’t love demand some sort of price?  So we pay it, certain of a rich return on our investment.

“What, what are you doing?” asks the Grandpa in the original Parent Trap movie as his granddaughter takes in the smell of his tobacco and peppermint.

“Making a memory,” she profoundly replies.

Alexa loves these lines.

We’ll be making some memories this week.  I’ll let you know how it goes.

Where We Are

When President Obama came to comfort our city after the bombing attacks he said,

“Tomorrow, the sun will rise over Boston. Tomorrow, the sun will rise over this country that we love, this special place, this state of grace. Scripture tells us to run with endurance the race that is set before us.”

Last week on the radio I heard an advertisement for One Fund Boston played over and over again.  The fund was set up to help the victims of this horrific act.  The ad included a clip of President Obama’s voice saying, “This special place, this state of grace.”  As I was driving around all week I kept hearing those two lines repeated, “This special place, this state of grace.”

***********

On Friday Steve and I took Alexa to the dentist.  This is a carefully orchestrated event because both of us are needed to help get the job done and we have to go when Darlene, the dental hygienist that has been working with her for years, is available.

Steve left early with Alexa because he had to go to the bank before the dentist.  I was going to meet them there.  As I was getting ready to leave the phone rang.  It was the dentist’s assistant.  “We’ve made a mistake,” the woman said.  “Darlene is not in today – we should have called you yesterday to tell you – I am so sorry.”  We discussed our options.  Another dental hygienist was scheduled to work with Alexa and besides, Steve and I had altered our plans for the day.  “Does she have experience with tough kids?  Will she really get in there and try?”  I asked.  “Oh yes,” the assistant replied.  I decided to go for it.

It was the right decision.  The hygienist was wonderful.  I knew she got it when she walked into the room and Alexa said, “Firstly.”  I don’t know what movie that word comes from but she has been saying it quite a lot lately, “Firstly.”

The hygienist scooped up the single word uttered and ran with it.  “Firstly, I am going to put this bib on you.  Secondly, I am going to let you pick out the toothpaste.  What flavor would you like to try?”

It seemed like chocolate was a worthy choice.  Soon it was evident that Alexa did not care for that fake flavor.  The hygienist changed the brush and opened up peppermint instead.

Alexa did an amazing job.  She had never voluntarily opened her mouth so wide before.  Don’t get me wrong, it was still quite an ordeal.  Steve held her hands at the front of the chair and I held her feet.  We started out the other way around but Alexa wiggled her hands out of my grasp and pulled the hygienist’s hands out of her mouth, so we switched since Steve is stronger.

We all kept encouraging Alexa, praising her for doing such a great job.  The hygienist involved her when she could but whenever Alexa opened her mouth a crack she dove right in with the brush and tried to get each tooth cleaned.

From the foot of the chair where I was holding Alexa’s feet, I took in the scene: this beautiful young woman struggling with autism who was trying so hard to be brave, this kind but determined hygienist who had a child with disabilities herself, and then there was Steve.

I looked at Steve as he gently but firmly held Alexa’s hands.  On his hands, I could see the red scabs of several deep gashes.  Alexa had grabbed at his hands earlier that week and scratched them when he had tried something different with her in the car – he had pulled up to a full-service gas station.

My only theory in why getting gas bothers Alexa is that while gas is being pumped into the car, the hose is not ‘put away.‘  She needs all things to be put away all the time.  When they are not, she gets anxious, panicked even, and lashes out.

We have made great progress on this but usually she stays in the car while we get out to pump the gas ourselves.  Then holding the pump with one hand, we hold up the other hand and count with our fingers; 1,2,3,4,5.  1,2,3,4,5.  We do this until the tank if full.  Having someone else pump the gas was different.   Too late, Steve realized Alexa couldn’t handle the change.

Now I looked at his wounded hands holding hers tenderly and I heard the soothing words of the hygienist.  I was struck at how much love constantly surrounds this child.  Not only from us, her parents, but also from people she comes in contact with, however briefly.  Because of her, it seems like we get a close up view of how strong love is, how it lifts us up and carries us forward, no matter how great the odds.

In my head I heard those two lines from the President again, and this time they summed up exactly how I felt about this room, “This special place, this state of grace.”

“Yes,” I thought. “That is where we are.”

And the Angels

A few years ago I gave Alexa’s Sunday School teachers a handmade tile from an Etsy artist for Christmas.  “Angels Are Real,” it said.

I gave them this gift because we had all borne witness to Alexa’s sudden staring off towards a corner of the church as we stood singing worship songs together.  “Angels!” she’d suddenly say objectively, as if she was labeling a firetruck, very matter-of-factly.

“Oh wow, angels are real, in fact they might actually be here,” we all thought.

Yesterday I picked Alexa up from Lizzi.  We met at a rug store I was doing business at.  We were within a few miles of the mall.

“Do you want to go home now?” I asked Alexa hopefully when we got into the car.

“Mall!” she said emphatically.

Oh dear.  Could I suggest something more tempting to her?  Like a toasted english muffin with melted cheese on top for dinner perhaps?

No, I could not.  “Mall!” she said again, insistingly.

I drove her to the mall.

We walked past the clothing store I usually try to drag her into.

We walked past Mrs. Field’s cookies.

“Computers!”  Alexa began to pronounce loudly.

“Well, yes, we are near the store where we usually buy our computers,” I said.  We were approaching the Apple Store.  When we drew close to the store’s wide entrance Alexa insisted we went inside.

The guy was waiting to check people in with his iPad.  I watched as he absorbed our unique picture.  “I don’t know why she wants to come in here,” I said lamely.

“Because it’s the greatest place on earth!” he said without missing a beat.

We strolled past him and just stood in the middle of the store.

“Computer!  Computer!  Computer!”  Alexa sang out her praises to anyone who would listen as she gazed around, marveling.

Steve called as we were finally leaving.  In a shameless ploy to get her out of the store I had asked Alexa if she wanted some food.  I could hardly hear Steve as he was running towards the bus – it was something about supper.  Something about father and daughter, the apple falling not far from the tree.

The truth of the matter is this – Steve is the cook in our family.  He likes to do it.  I don’t.  I’ve become somewhat lazy, reliant on him for his thoughts on all meals.  If it was up to me I’d open a can of Spaghettios,

“Maybe you could put some ravioli on.”  “Yes, well, but I am at the mall with Alexa.”  We were 30 miles from home.  “I was thinking Panera’s was a good idea for dinner tonight.”  Steve concurred that that sounded like a great alternative to my cooking.  “What do you want?” I asked him, but he was cutting out.  “No problem, I’ll take care of it.” I said with confidence.  What didn’t Steve like to eat?

We were walking towards the food court.  We had passed by the woman with body butter or some product that she was trying to get us to try.  I all but ignored her.  Alexa, on the other hand sang out a greeting to her.  “Hi!  Hello!” she echoed again and again.

When we had taken a few more steps towards the food court I mentioned Panera’s to Alexa and she did an about turn at the thought.  Back past the body butter woman we walked again.

This time, after Alexa warmly greeted her, I looked into her eyes.  “I love the pink color!” she said referring to Alexa’s shirt.  I smiled sincerely and said a heartfelt, “Thanks!”

Alexa makes me a better person,” I thought with a humbling, deep conviction.

We were passing the Victoria’s Secret store.  In large letters above a lacy blown-up bra big letters spelled out, “What kind of angel are you?”

Alexa likes letters so I pointed them out to her.  “Look Alexa, it says, ‘What kind of angel are you?’’’  I was curious about what she would say to that.

“And the angels will weep for you,” she instantly replied.

Only she said it exactly like Professor Henry Higgins says in My Fair Lady.  It sounded more like this:

“AND THE ANNNNNNNNGEEEEEEEELS WILL WEEEEEEEEEEP FOR YOU!!!!!”

Deep growling tones of the vocal cords dramatizing the letters for all they are worth.

I think this radical statement is declared after he makes Eliza an offer to teach her proper English, saying that if she doesn’t take him up on it she will receive no chocolates (or is that part my imagination?) “And the angels will weep for you!” he says.

He says it so emphatically, you just can’t help using that line if you are prone to the repetition of such things, as our family is.

It has become our best put-down.  “What do you think of this?” Steve or I will ask.  “AND THE ANGENNNGEEEEEELS WILL WEEEEEEEEP FOR YOU,” is the most potent response we can think of.

“God, I love this girl you gave me,” I said.

And the angels smiled for me instead.

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.

The Birthday Balloon

Yesterday I took Alexa to TGI Fridays to celebrate her 21st birthday.  We walked in and the hostess said, “Are you Alexa?  Is this your 21st birthday?” I looked over and there stood Irene, Suzanne and Johanna laughing and waiting for us.  Alexa was a little bit too overwhelmed to walk over and join them at first.  She backed up a bit with a huge but shy smile on her face.

“Oh, she’s stuck,” I heard one of our friends say as they surrounded her.

Someone started counting backwards, “5,4,3,2,1,” a trick I often use to get her to move.  “I have these people well trained,” I thought as I stepped toward the table.  My eyes met Alexa’s as I motioned for her to come.  Her eyes were radiantly happy.  Embraced by these dear friends she cautiously made her way to a table strewn with flowers, bags and a balloon that announced “21.”

We had come to know each one of these friends in a church.  Irene was a Sunday School teacher in Wayland who insisted the wild little 4 year old with severe autism join her class.  She’s been like family ever since.

Johanna began going to the church in Andover at about the same time we started going.  Even though she had studied Special Education, she swears no one at the church knew when they called her to ask if she would spend time with Alexa during sermons once a month.  She’s been Alexa’s special friend during sermons twice a month now for over 10 years.  Imagine that.

Suzanne got roped into taking a turn with Alexa because the topic got raised in the book group Johanna and I attended.  “Can someone who doesn’t know anything about autism do the job?” she asked.  “Heck yes,” we answered and grabbed her.

Wanting to give Alexa a proper 21st birthday celebration, we ordered her a Shirley Temple.  Suzanne asked the waitress to put it in a fancy glass.  Alexa posed for pictures briefly before pushing the glass away and wrinkling up her nose.  “It’s like punch!” I told her but she would have nothing to do with this unfamiliar thing.  Johanna had ordered a Shirley Temple also so when the waitress brought hers in a regular glass with a straw, Alexa swapped with her.  She showed no hesitation drinking it up this time.  I guess it didn’t look so foreign anymore.

Irene recalled joining Steve and me for her birthday once when going to Friendly’s was all that she could manage.  We have made progress over these past years.  Still, when Alexa stood up and started serenading us with one Disney Song after the other, I was glad we were in a quiet corner of the restaurant.  Irene said that was Suzanne’s idea.  Suzanne had them all organized by the time Alexa and I arrived.

It was a fine celebration.  Alexa took satisfying sips of her drink and uttered, “Ahhhhhh!”  She joined us as we toasted her with “cheers!” and “clink!”  We listened as she ran with a stream of word associations when we gave her a starting point.  She ate French fries and bread but would not try the chicken bites.  Her eyes were wide and round when a group of waitstaff clapped and sang her the Birthday song.  Looking around the table, I said, “Alexa, thank you for bringing such incredible people into our lives!”  She answered with a phrase from Mary Poppins, “Look, it’s all me pals!”

Steve stopped by on his way home from a meeting.  Alexa started getting anxious when I told her she would ride home with him so that I could get gas.  Goodbyes are terrible transitions, according to her.  You can never tell who is going where and with whom.

I wanted her to go with Steve because getting gas is no picnic either, from Alexa’s point of view.  Gas hoses belong in gas pumps.  She gets anxious about these kinds of details.  Laundry belongs in dressers.  Dishes belong on shelves.  Grocery items belong in the grocery store and pens belong in their holders — tricky in a house where a writer and architect live.

Irene drove to our home after the party so we could visit a little longer.  After a while, I heard a bag rustling in the kitchen.  Irene was telling me something and I tried to focus on what she was saying but I heard someone struggling with a bag repeatedly.  I suspected it was Alexa trying to put something away.

She had watched anxiously as I quickly put her beautiful flowers in their vases when we got back.  Then she tried putting the bag with some other gifts in my bedroom, shutting the door.  Deciding that was not good enough, she brought the bag out again.  I hurried to unpack it and find places for the gifts she received so that she would feel more at ease.

All that was left was the “21” balloon.  I carried it into her bedroom and attached it to her chair.  “She’ll be fine with it here,” I thought, remembering past celebrations.

Now, hearing the bag again I yelled out, “Hey Alexa, do you need help?”  The only answer was the sound of the bag still rustling.  I walked into the kitchen.  There she was, trying to stuff the blown-up balloon into the emptied gift bag.

Seeing it broke my heart.   “Ohhhh honey, it doesn’t belong in there!” I told her as I tried to clasp the balloon onto something else.  I thought about how tough it must be to live in a land where things are constantly not put away adequately and was reminded of how brave my daughter was.  Where do balloons really belong anyway?

***************

When I got out of bed this morning, bleary-eyed, the first thing that came into focus was a balloon standing tall as a soldier against the wall near my bedroom door.  With bright colors and bold stars it announced to the waking world: “21.”