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.

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!

NBC News Story

http://www.nbcnews.com/health/health-news/disabled-adult-child-can-mean-uncertain-future-parents-f8C11379333

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.

A Different One

As you know, Alexa has autism and does not have conversational speech.  So, imagine Martha’s surprise when she walked out to collect Alexa from the van as she arrived at her program and experienced this exchange:

“Hi Alexa, are you ready to go?”

“Oui!”

I am telling you, Alexa is smarter than you might suppose.  I will also tell you that she was watching Madeline that morning before the van picked her up.  Still, her answer came clear, concise, right on cue… and in French.

If the English language isn’t working out so well, why don’t we just try a different one?

Saying that reminds me of getting in the car with Alexa when she hands me the same CD we’ve listened to a 100 times.  “No!” I yell.  “Give me a different one!  You’re killing me here!  You’re driving me NUTS!”  I say this especially if she is stuck on listening to The Wiggles or Lawrence Welk.

“KNOTS!”  she repeats, laughing hysterically as she hands me a different CD.

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

There was too much hair-pulling in our house this week.  I am speaking literally.  My poor head.  It is just that pulling my hair has always been Alexa’s fastest way of communicating her angst.  I understand but it gets to me sometimes.  It got to me this week.     After one incident in the early evening, I just sort of gave up on the day and went to bed.  I let reading calm my brain enough to finally fall asleep.  It was a fitful sleep because the fear and frustration of the day followed me into the night.  I hate it when that happens.

The following morning Steve and I went to Alexa’s Individualized Education Plan meeting where we heard plenty of good reports.  I sat there feeling fatigued one minute and proud the next and left knowing that these ups and downs are just part of everyone’s life. I think most families have some hellish moments to get through.  It is important to remember that.

The good thing about mornings though is that the day it brings is a different one.  We can make some changes or try different things or choose to listen to a different kind of song.  Hope thrives in the rising sun.  Knowing that helps me hold on.

Without You

The other night my sister Maria called.  She was crying.  She said she just watched something on the news about how a family struggled to care for their loved one who suffered with autism.  Maria said, “There is a reason you are where you are – you have the right kind of support!  This family reminded me so much of you and they just don’t have the right support!”   It is true.  I don’t know how we could make it without Kim, our behaviorist, and Dr. Prince, our miracle man, along with all the extra help Alexa receives from the state.  Because of the state program we’re in, Alexa has incredible friends like Lizzi and Sarah in her life.  I’m not exaggerating when I say without all of these pieces in place, there are times when our lives would not be do-able.  Our lives might not even be safe.

I am a member of the Citizen’s Advisory Board for the Department of Developmental Services in Massachusetts.  Our fearless leader, also named Maria, is always imploring us to call state and federal officials on behalf of our children.  “Call, call, call!” she says.  Then “Call, call, call again using a different voice!”

Later this month, we are hosting an event to thank our state legislators who are so faithful in giving the Department support.  We’ve done this before and it was a memorable night.  We heard touching stories about how important support is to families and to individuals who want to make it on their own, but the simple truth is that they can’t.  Because of our life situation, I feel so sensitive about this.  We were touched and delighted when the evening ended unexpectedly with the legislators themselves sharing stories with us about their own friends and family members.

How these events come together is always a mystery to me.  I could never lead such an endeavor.  We had an urgent meeting this week to try and plan this month’s event.  “We need something to give to the legislators,” Maria said.  “Something they can take back to their office and hang on the wall.”  She looked straight at me.  “We need something….. like a poem perhaps.”  I looked back at her.  “Really? You want me to try and write something?”  “I’m just saying we need something,” she repeated.

On the drive home my thoughts went from “I couldn’t possibly…” to “Here’s another opportunity to be Alexa’s voice.”  Widening my vision to all kinds of people who are served by the Department, I went home and wrote out my gratitude.

WITHOUT YOU

When you see me out there walking
or rolling my chair around
dancing under a golden sun
you’ll know how much I can do.
But this day might look different
without you.

When you see me working hard
taking pride in every task
practicing and achieving
you’ll know how much I can do.
But this job might look different
without you.

When you see me with my family
love making us strong
feeling this is where I belong
you’ll know how much I can do.
But this household might look different
without you.

When you see me in my home
sharing meals with all my friends
celebrating food rich with color
you’ll know how much I can do.
But this place might look different
without you.

When you see the light in my eyes
filled with joy that I can share
believing I am heard and understood
you’ll know how much I can do.
But this life might look different
without you.

D. Alison Watt
2013

Beep, Beep, Beep

I took Alexa to the mall last week.  It was February Vacation so I was looking for things to do.  I got her to try on some coats at Sears.  I walked over to another display, but when I looked up I could see Alexa inching closer to the mall entrance, alerting me that our shopping time was over.  It was time for a snack from her point of view.

She took my arm and was chattering happily as we walked towards the food court.  We didn’t get very far.  All the alarms spaced evenly apart in the mall’s expansive hallways started going off.  “BEEP, BEEP, BEEP!”  It was an onslaught to the senses with strobe lights flashing and the sound painfully loud.

Without saying a word, Alexa and I did an about turn.  We hurried back towards Sears.  I tried covering up her ears but she shook free of my hold.  “Oh dear God, please let us get out of here before we get locked in!” I prayed, envisioning metal doors crashing down.

We made it back to Sears.  The sound was fading in the distance since the alarms were not going off in the store, thankfully.  I started to breathe a sigh of relief when suddenly Alexa started bellowing out, “BEEP, BEEP, BEEP!”

“BEEP, BEEP, BEEP!” she continued in a tone almost, but not quite, as loud as the actual alarm.  I led her through the store.  She kept BEEP, BEEP, BEEPing all the way back to the car.  People looked at her like she was crazy.  I thought they would have a whole new appreciation for her warning once they got into the mall.

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Alexa was just looking over my shoulder as she often does while I type and read, “BEEP, BEEP, BEEP!”  I said, “That’s right!  I’m telling the story!”  Then she said, “Bus.”  Oh, she thinks I’m telling you that her van beeps when it is backing up.  Well yes, it does.  That is something else you should know.

**********

I was driving home on Friday when I saw an overhead sign flashing above the highway, warning us that another winter storm warning was in effect.  Take precautions!  Prepare!    Plan your travel accordingly!

“BEEP, BEEP, BEEP!”

A couple of weeks ago, I was rushing around trying to prepare for the blizzard that was about to hit Boston.  The news station I was listening to in the car had me in a panic, for goodness sakes.

I went to the store and stocked up on some essentials.  I unpacked the groceries at home.  Then, seized with the certainty that I would make cookies during the storm, I realized I didn’t have enough flour.  I got back in the car to go back to the store but I drove to the post office first.

The lady in the post office told me that Shaw’s had run out of milk which just added to my sense of panic.  After I was finished mailing my things, (Quick!  Get them out of the state before the storm!) I went to Market Basket.  Apparently I was not the only one with the cookie baking idea.  All the bags of Market Basket flour were gone so I had to grab one of the last Pillsbury packages from the nearly empty shelf which was covered with white residue.

“BEEP, BEEP, BEEP!”

As I started driving home again, I worried about losing power.  What good was all this food if we lost power?  Maybe we should cook a lasagna tonight.  That way if we lost power we could heat up pieces of lasagna by manually lighting the stove.  Thinking about not having power, I worried about not having ice.  I also needed to get gas.

Once my brain was on a roll, there seemed to be so much to worry about.  Washington is in a gridlock.  Our renovation isn’t finished.  We are overdue for Alexa’s IEP (Individualized Education Plan) meeting.  There is a hole in my family because my dad died.

“BEEP, BEEP, BEEP!”

There is a low pair of bridges reaching over the Merrimack River, connecting Newburyport to Amesbury.  It is not very far from where the river pushes its way into the ocean.  I had sailed over the first bridge and was just starting over the next when the car in front of me hit its breaks.

What in the world?  I saw people gathering on the bridge’s sidewalk.  Each person was holding a camera or cell phone.  Most were pointing their devices towards the sky.

I leaned forward and tried to follow their direction, wondering if I could see what they were looking at from my car.  There was a tree close to the road and my eyes jumped to the top.  Sitting on the tree as if it were a throne was a huge bald eagle.  Its sheer size and signature white head made the sight unmistakable.

Traffic crawled forward.  As soon as I could, I pulled my car into a side road like other cars were doing, left and right.  I ran towards the bridge, joining people watching.  All eyes were on the eagle, occasionally skirting down to share wordless wonder with another human before being drawn irresistibly back to the eagle again.

I watched as it posed with its classic profile.  I watched as it stared down at us.  I stood beneath it, humbled and touched as it opened its beak and let out a call, a call to the world from the wild.

It sounds like a cliche but my eyes filled with tears at the sight of something so majestic.  I couldn’t help myself.  The bird was higher than I was.  It could sense things I could not see.  It seemed calm and ready and haughty, knowing its power to soar through a storm that sent us into useless scurry.

I took pictures and video and still the eagle sat there, as comfortable as can be.  Knowing I had to get home before Alexa, I reluctantly left, making room for more people who were rushing in to see the bird.

I didn’t panic when I discovered that one of the gas stations in town had closed.  I just calmly drove to the next one and patiently waited in a long line until it was my turn.  I felt different.  I felt lifted.  The beep, beep, beeping in my head was finally silenced.

Now every time I cross that bridge I look to the top of that tree.  I have not seen the eagle again but I like how the memory of it makes me look up.  I think that is where my eyes are most comfortable really: looking up.  For help and for comfort and for the perspective of things bigger than me.

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.