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.

 

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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.

My Girls

On Sunday morning Steve told me, “Your girls are up to something.  I think you and Alexa should wear something nice.”  By “my girls” he meant “The Alexa Team” at church – Suzanne, Marnie and Johanna.  When we started attending Free Christian Church I called Kathy, the Children’s Minister.  “Do you have a program for children with Special Needs?” I asked.  Years later I would find out the truth – that they did not have such a program but she thought they should and so her answer to me that day was “yes” anyway.

“The Alexa Team” was created.  Kathy called Johanna who is the mother of three typical daughters.  What Kathy didn’t know was that Johanna had studied Special Ed.  So, Johanna was the first to come on board over ten years ago.  Then she and I met Suzanne at book club one night and Suzanne asked if a person needed to know anything about Special Ed to volunteer. “No, not necessarily…” I ventured, knowing Suzanne’s spunk and spirit would be a good match for Alexa.  So, Suzanne came next and she has also been deeply committed to our family during these past eight years.  Then Marnie joined the crew.  She is Alexa’s primary care doctor.  The qualifications don’t get much better than that.

Alexa stays in the sanctuary for the music and then one of these women take her out during the sermon.  They read to her, listen to music and give her snacks which have been stuffed into their purses.  Sometimes they come back in for communion or for the closing song.

This Sunday after the music was finished, at the time when someone would normally be taking Alexa out, Johanna appeared behind us with a big plant in her arms.  She sat down in our row next to Marnie and Suzanne.  “What’s happening?  What’s happening?” I asked nervously.

The pastor spoke.  “Ali Watt, we need you to come down to the front – right down here – and your friends will be coming down with you.”

When the pastor says something outrageous like that, the named person has two choices – either cooperate and start walking towards the front or run like heck out the back door.  Believe me, I briefly considered both before following his directions.

Well, the whole thing was mortifyingly embarrassing and I didn’t deserve it at all, the way Suzanne and Marnie went on about the kind of mother I am while Johanna stood next to me, holding the heavy hydrangea.  All I could do was shake my head.  “Make it stop.  Make it stop!”  I was silently pleading.

I’ll tell you what did feel natural though and somehow very right – when they started talking about Alexa.  “Alexa is a bright star in our lives.  She is the most authentic person we know.  She is honest with her feelings.  She exemplifies Matthew 5:37 – “let what you say be simply ‘Yes’ or ‘No.’ “

As she was saying these words I looked up and saw Steve sitting in our usual back corner with Alexa standing next to him.  Even from the front I could see that she was beaming.  It did feel right in that moment for me to be standing arm and arm with these strong, God-loving women.  “You’ve got us all, Alexa,”  I thought.  “We are all on your team.”

Suzanne ended by saying that the plant was given to me in honor of my mother.  There was a new wooden stick for Alexa to twirl which was signed by many of our friends in honor of her turning twenty-two.  There was even a little wooden truck for Steve that said “Take a Ride,” Alexa’s most frequent request.  Attached to the bottom of the truck was a gas card.

Suzanne knew this Mother’s Day would be hard for me – the first since my mom died – so this is what she decided to do about it.  Wrap our family up in love, wrap me up and tell me I am a good mother.

Which is exactly why I think maybe – just maybe, my mom was also involved with this ridiculous scene at church.  I remember talking to her on the phone between my frantic trips to Michigan last November.  “It’s just that you are the BEST mother!” I wailed, unable to contain my grief.  Her voice suddenly became clear and strong. “No,” she insisted, “you are.”

This is the phrase I want to give to Suzanne, Marnie and Johanna.  This is the praise I want to sing for all the amazing women in my life.  This is the encouragement which echo’s all the way from heaven, I am sure.

“No, you are.”

You are.

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!

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.

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.”

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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.

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.”

So Much

It wasn’t until I started transporting Alexa to a special preschool that I began to notice how quiet she was in the car.  Because of her autism she was very late to speak, so silence hung in the air thick as fog while I was driving, separating me from my three year old’s voice and thoughts.  I wondered if all the miles ahead of us would be like this.

Project Spoke, the program Alexa attended in Foxboro, would eventually teach her how to use sign language for basic but essential words like “more” and “help.” She would learn to point at pictures to ask us for something. She would develop an uncanny ability to repeat phrases from books, songs and movies to communicate called “echolalia”.  But back then, during those quiet commutes, there was so much more I longed for us to share.

I realized then it was up to me to break the silence.  I commented on objects we saw as our car cruised by.  I sang songs, I made animal noises, I did anything to get her attention and gain a response.  The goofier I got the more involved she became.  Steve became good at being silly too.  She didn’t have many words but at least we could laugh together.

Next month, Alexa will turn 21 years old.  Although she is still severely affected by autism, she has become a beautiful young woman and I am very proud of her.  We have all worked hard and she has come a long way.

While we still cannot carry on a typical conversation, we have learned that sharing the most important things in life are not limited by such conventions.  Alexa knows she is loved.  During those early years in the car I determined that is how our family would survive and even thrive – our love would be fierce in the face of hard things.

A few months ago, Alexa and I were riding in the car together when I suddenly burst out, “Alexa, I love you so much I can’t stand it!”

She grinned at the tone in my voice and repeated, “Stand it!”

Given the encouragement of her participation, I tried to draw the moment out.  “I can’t!  I cannot stand it!  I love you SO MUCH!” my voice rose.

“So much! Stand it!” she echoed, laughing.

Rewarded by her huge smiles, I realized I could keep this going for quite a while by adding different descriptions to the sentence.  “Alexa, I love you so much I can hardly even stand it!”  Then, “I love you so much I can hardly even for one single second stand it!”  Finally, “ALEXA, I LOVE YOU SO STINKING MUCH I CAN HARDLY FOR ONE SINGLE SOLITARY SECOND STAND IT!”

Alexa adores this exchange.  She requests it now when we get into the car.  “I can’t stand it!” she starts me off, and I launch into the longest rant about love I can think of.

Last week we were waiting in line at a store.  Alexa was bored.  She grabbed me by the shoulders and looked deep into my eyes.

“Stand it!” she said loudly.  Feeling self-conscious, I whispered that I loved her.  “So much!” she said.

“Alexa I love you so much I cannot even for one single second stand it!” I whispered back.

“SO STINKING MUCH!” she yelled, wanting more.

Oh, goodness.  What would people think of this strange pair?

“We should all be loved so stinking much,” the cashier observed.

As long as Alexa knows it’s stinking true.

Mascara

Martha, the Director of Alexa’s program, emailed me last night and said that they were going to have a busy day today.  Alexa was going to her job site and then they were going to go shopping for the ingredients to make spaghetti and chocolate chip cookies.  I emailed her back and said that Alexa likes to eat spaghetti plain with no sauce and that she calls chocolate chip cookie dough, “mascara.”  Martha emailed a reply saying she was happy to learn that because they made chocolate pudding one day and Alexa called it “mascara” also.

Alexa started calling dough “mascara” when they were teaching her how to make brownies at her old school.  When you think about it, brownie dough does look a lot like mascara so that makes sense.  I don’t think chocolate chip cookie dough looks like mascara but the term stuck.  Interestingly, she calls those little cinnamon rolls we get from BJ’s, “cookie dough,” so she kind of lost me on that one, except that they do look more like chocolate chip cookie dough than mascara.

Alexa calls eye shadow, “eye blush.”  She calls orange juice “apple juice,” chicken nuggets “fish sticks,” and ice cream sandwiches “hot chocolate.”  I am telling you, we speak a different language over here.  Sometimes she combines names – Bruce Springsteen is “Brucesteen.”  And sometimes she makes up a new name altogether – Keith Urban is “Kangerelli” which I think is brilliant, because he’s from Australia – land of kangaroos.

I was in the middle of all these emails about Alexa last night when someone on TV mentioned their Bucket List.  And I thought the last thing I need is another list “to do.”  So, I made up a new word, “Chuckit.”  A Chuckit List is a list of things you do not need to do which sounds infinitely better to me right now.  On this list would be ideas you can let go of.  Dreams your heart isn’t so into anymore.  Goals that don’t seem worthy of the cost.

The truth is, Alexa has taught me to live a simple life.  Suitcases bother her so we don’t travel very much these days.  When we do take a car ride to Michigan, we put all of our clothes in a plastic dresser that fits in the back of our car so that suitcases are not in the picture.  Our clothes are always put away, in Alexa’s mind.  I think that is her issue with suitcases – clothes don’t really belong there now do they?  Who are we trying to fool?

It’s hard to strike the best balance between a Bucket List life and one that leans more towards Chuckit.  It doesn’t seem right to give up trying altogether, but some things just don’t seem worth all the effort anymore.

Last Sunday afternoon Kim, Alexa’s behaviorist, came over for a session.  I was feeling exhausted before she came but she brought such a spirit of optimism, hope and excitement with her that I couldn’t stay in my dreary state of mind for long with her in the house.

Kim has a passion to reach people like Alexa because she believes, as I do, that they are constantly trying to reach back.  She understands how people affected by autism may think, see and feel.  She doesn’t give up.  Behavior problems do not faze her in the least.  Utter respect for a person who does not have a good way of communicating is utmost in her mind.

On Sunday, Kim sat down with Alexa and me with her notebook.  She cheerfully suggested that Alexa get her notebook out too.  Alexa reached over to take Kim’s pen which looked appealingly like a lollipop.  Alexa started writing her signature – a thing of beauty, the only thing she can write by herself, a lovely burst of A’s and hearts and T’s.

Kim became completely engaged with what Alexa was writing.  She recognized it as an attempt for Alexa to express herself.  She wrote out the whole alphabet on the piece of notepaper Alexa was writing on.  Alexa stared at the letters, enthralled.  Then she started barking out orders to Kim.  “Z!”  she yelled.  Kim wrote down Z.  “W!”  Alexa continued.  Then,”A”, then “T”, and “T.”  Our new family name, ZWATT.

Alexa has told us to spell out her first and last names before.  The next name most frequently requested from her is “Momma.”   Then she typically asks for a smiley face.   Awww.  But Kim challenged me to think about what else she could learn to spell if we kept the alphabet letters before her at her eye level more of the time.

I felt invigorated after Kim left.  I felt like we could conquer the world, after all.  It was a good reminder to me that  no matter what I am going to give up on in my life, my daughter cannot be one of them – ever.  Even if we can help her form one more word that expresses one more thing she wants to talk about – it’s a top-of-the-list dream to me.