Hearts Without Spots

I sat outside on the garden bench, my mind and heart a chaotic bubble of emotions, like a popcorn popper on high they bounced erratically around in my head.

frustration

sadness

anger

inadequacy

remorse

fear

forgiveness

compassion

resolve

All because of a pair of pants.  It is Sunday, Mother's Day.  My husband and I were dressed and ready to leave for church.  I have this thing about being on time to church.  A few minutes early is preferable, but getting there just on time and seated is usually how it works out for us.  Being late is not okay with me unless it's totally unavoidable.  Despite how hard we work to avoid it, it happens more often than is "acceptable."   We greet each Sunday with renewed hope that "this week we'll do it!"  

Mother's Day.  Oh, we were so close.  Daniel was dressed -- all except for changing out of his sweatpants.  Easy, right?  Not in Autismland it isn't.

"I don't like those pants.  Those are hard pants.  I like soft pants."

We're talking here about soft, navy blue corduroy pants, which by most people's standards would not be considered "hard," but to him, compared to the soft fleecy pants he had been wearing all morning coupled with his sensory challenges, these were as hard as sandpaper and we were beyond cruel for asking him to wear them.  He wasn't having it.

The clock was ticking.  We were running out of time.  We live less than three minutes from our church.  Three minutes.  It's a good thing we do because scenes like this one play out more Sunday mornings than I'd like to admit.  Time is of the essence in our world.  It's part of the fabric of our life --  no pun intended!  Sometimes the smallest request can result in Custer's Last Stand.  This morning was such a time.

Now, you might ask, "Why not just let him wear the sweatpants?"  That was an option that I considered, but if I give in to him, he won't trust me to mean what I say.  Love and discipline go hand in hand.  And out of love and discipline, trust and respect is born. Unlike a neurotypical child, Daniel isn't naturally wired to understand how his actions affect others.  I'm trying to prepare him for life.  This isn't just about sweatpants.

I'll spare you all the ugly details, but suffice it to say it didn't go well.  We used all the tools in our autism toolkit to get this boy dressed.  Physically forcing him doesn't work; it makes it a hundred times worse.  The time to leave for church came and went.  Here it was, Mother's Day,  I was dressed up in what he calls my "zebra dress," a cute and rather bold black-and-white striped Calvin Klein dress, accessorized with equally bold jewelry, makeup and hair done, and now we weren't going anywhere.  

The emotions that I am normally very adept at keeping under control and in perspective, bubbled over like a geyser.  I threw my sweater on the table and declared, "I give up."  On the verge of tears, I retreated to the backyard.  And there I sat on the garden bench in my zebra dress.  

"Happy Mother's Day,"  I said to myself.  Some mother I am.  I can't even get my son to put on his pants.

All those emotions...

frustration

sadness

anger

inadequacy

remorse

fear

forgiveness

compassion

resolve

Yet through the frustration and feeling of utter defeat, one emotion fought so hard to be felt above the others, breaking through the throng:  resolve.  

I know that Daniel did not refuse to put his pants on in order to make us miss church, to make me angry, sad, and frustrated, sending me running to the backyard.  It isn't enough to just say, "Well, he has autism and he doesn't understand how his actions affect others."  It's my God-given responsibility to break through and reach him.  He didn't understand nor care that I was sad that we missed church, that I wanted to see our friends, and sing the songs, and hear the sermon, and have a few minutes of adult conversation on the patio after services.  No.  He didn't understand nor care that "today is Mother's Day" and "this is Mom's day."  No.  I felt cheated and slighted, but there was no time to wallow in those feelings.  It isn't about me, and this wasn't just about sweatpants.

Here is what it was about:  He feels all the same emotions I do.  How do I help him see how what he does can hurt me or cause me joy?  Because living in this world, that matters.  He needs to understand.  But how?  I sat on the bench waiting for the answer to come.  

Still shaken by frustration, sadness and inadequacy, I pulled resolve, compassion and forgiveness out of the toolbox and walked back inside.  He and my husband met me as I walked back in, Daniel, miraculously, dressed in the blue corduroy pants.  We could still go, it was suggested.  But, no.   There was something more important to do this Sunday.

Resolve still neck and neck with defeat, I took out a piece of paper and his crayons and started drawing a stick figure with a heart.   

"What are you drawing?  Who is that?" he asked.

"It's Mommy," I said.

Observing the picture, he asked, "Are you going to make yourself sad?"

See?  He knows.  Some people say these children don't have empathy.  They are so wrong.

I drew the heart and colored it in red and then added a smaller stick figure next to me representing Daniel.

"That's you," I said.

"Oh, yeah.  Okay," Daniel said.

"When you don't listen to me, like not putting on your pants so we can get to church on time, that hurts Mommy's heart.  I'm sad that we didn't go."

Then I drew black spots on my stick figure heart.  I had his full attention now.  He could barely get through my illustration.  His face reflected fear and anxiety, emotion rising to the surface, his eyes welling up with tears.  He said, "I'm sorry, Mommy. I'm sorry.  I don't like those black spots.  Get rid of them!  Get rid of them!"  And he began to cry.

It was like a flood of healing waters.  He understood.  I had broken through.  He hugged me and told me again that he was sorry.  We talked about what he needs to do -- or not do -- so there aren't any black spots.  Below it, I drew another stick figure of me with a red, spotless heart.

"Which one do you want me to have?  This one?"  Or this one?" pointing to the figure on the bottom.

He pointed to the new heart, the one without the spots.  And then he hugged me again just to make sure that Mommy was okay -- because for him, everything is okay in his world if Mommy's okay.

A little while later, he came to me (as I was writing this very story) and brought me the picture.  

Presenting the picture, he said, "I changed it.  I made us happy.  You're picking flowers," he explained.  

Ugh.  He had added flowers in my stick-like hands.  I wanted to hug him and cry at the depth of love and emotion he has inside of him, but that would have frightened him.

Holding back my tears, I asked, "And what's that heart that you drew next to me?"

"That's the heart with no spots."

The full import of this morning's lesson didn't hit me until then:  That's the heart that I want, too.   God always has a way of teaching me something about myself when I think it's just about Daniel or it's just about someone, or something else.  

Who doesn't want a spotless heart?  A heart that is guiltless before a holy God?  And there was more.  This simple stick figure drawing contains powerful spiritual truths for my son, the very ones that I have struggled to teach him, truths that God is slowly helping him to grasp:  Your heart is not pure, but I can wash it as white as snow.  And these very truths are reminders to me of where my own heart needs to be every day that I breathe in oxygen. 

This wasn't just about sweatpants.    

Selah.

  

So Much Spring

I love spring.  Well, who doesn't?  Have you ever heard someone say, "Spring?  I hate spring.  I can't stand all those flowers."  I don't think I've ever heard anyone say that -- unless it had something to do with pollen and allergies.

And what about those flowers? All those new ones bursting forth, greeting the world with their vibrant selves.  For the many months of fall and winter, they lay dormant, hidden little surprises tucked inside woody, leafless plants, plants that seem...unproductive.

Our neighbor, Mike, is a horticulturist.  I thought it odd that for a plant guru, his front yard seemed void of color and interest.  One would expect living next to a horticulturist, a garden of exceeding beauty and complexity, perfectly balanced and color-coordinated, the magnum opus of the neighborhood.  Not so, I thought.

Well, I was wrong.  A couple of weeks ago, as winter passed its baton to spring -- gradually and yet suddenly, it seemed -- his landscaping took on a new appearance.  Now the tall green spires in his front yard were full of yellowish-white blossomy things.  I have no idea what they are.  He told me, but I can't pronounce its Latin name, let alone remember it.  A bush that borders our driveway, once twiggy and easily ignored, is now festooned with bright-green heart-shaped leaves and magenta blossoms.  It calls out to you, "And you thought I was ugly!  Take a look at me now, lady."  Yet another formerly odd-looking specimen, reed-like in appearance, is showing off its chocolate-brown-and-green foliage.  Fluffy, feathery looking trees that bear a striking resemblance to the Truffula trees from Dr. Seuss's, The Lorax, are getting fuller and fluffier yet.  And there's more.  The whole thing is understated and stunning.  I take back everything I thought, Mike.  I get it now.  Beauty sometimes has to wait for its proper moment.

Still thinking about the lovely plants that I have the joy to live next to now, I walked into the mud room to do some laundry, peered out the window and caught a glimpse of the sun-drenched mountain.

I was aghast.  "What's that mountain doing there?  I've never seen that before!"

I'm not joking.  I don't remember it being there.  The sun rising in the east cast its warm glow against the Topa Topas this morning and, suddenly, something that has been there every day, looked so different and beautiful, that I scarcely recognized it.

One simple and yet extremely profound truth is that when a seed is planted in the ground, it dies unto itself when it produces the seedling.  Locked inside that humble little capsule, some as tiny as a grain of salt, is life itself.  And the process of life keeps reproducing itself each season.  Stop and ponder that for a second and I can assure you that once the profundity of that hits you, anything I say will not be instructive, because I can't explain it and I can't make it any grander and miraculous than it is in its own simple reality.  It just is.  Like my neighbor's garden, the most beautiful things may not always be apparent.  We have to wait for it.

So I wonder:  What hidden seeds lie waiting to come to life inside of Daniel's mind?

The brain of an autistic child is different than a neurotypical child's.  For instance, the parts of his brain that control communication are wired differently.  It is why I am at a loss when he asks me a question that doesn't have an answer.  It is why he has to be taught how to have a reciprocal conversation.  It is why he misreads people's laughter and is certain they are laughing at him.  It is why no matter what I say, I cannot convince him otherwise.  Sometimes I wonder if this will ever change.  And then spring came.

We have seen developmental change in Daniel over the last year.  It happens when I'm not looking for it.  Little surprises that make me stand in awe of him.  These are moments like emerging seedlings.  He'll say something witty.  He'll ask me a question he's never asked me before.  He'll say something funny and know it's funny.  He'll use words that I didn't think he knew.  They are seedlings.  They have been waiting to come, waiting to surface, hidden, unseen.

It gives me tremendous hope in knowing that there is so much spring inside of Daniel. Tomorrow, there's probably going to be some new and unusual plant in my neighbor's garden, having burst forth during the night.  And like that, I love waking up each day not knowing which pathway in his brain may be awakened today.  Mystery is good.  Waiting is good.

I love spring.

Selah.

Love is Blind

I heard something hit the floor after I left Daniel at the computer to play a game. I ignored that sixth sense to go check, but I figured it couldn't be anything that important. When I went back in, my glasses were gone.

ME: "Where are my glasses, Daniel?"

"Deer in the headlights" look from him.

ME: "Oh, there they are, on the FLOOR, with your foot on top of them, lenses DOWN."

Oh, yes, friends, they are ruined. That's what happens when your 5-year-old uses them as a foot massager.

Children with autism struggle with understanding other people's emotions and expressing empathy. He continued to play his game while I lamented over my mangled glasses. I had to at least attempt to turn this into a teachable moment, though. PBS's Daniel Tiger's Neighborhood (Fred Rogers Foundation) teaches these principles in their cartoon.

ME: "Remember what Daniel Tiger said? It's called "empathy," Daniel!" I was still mad at this point.

DANIEL: "Empatty."

ME: Yeah, EMPATHY. Remember?

Apparently, he did. At this point, he starts humming the song from the episode on empathy: "Thiiiiink about how someone else is feeeeeeeling....."

DANIEL: Mommy, are you happy or sad? I want you to be happy.

And so I ask you, how do you stay mad?  I'm not mad anymore.  Just half-blind.

Special Needs Spotlight with Miggy

Last year, while researching the word "Nebraska" for a job I was working on, I stumbled across the blog, This Little Miggy Stayed Home.  I was immediately drawn to Miggy's writing and the stories she shared.  Then I discovered her Special Needs Spotlight page.  Coincidence?  You who know me well know my answer:  Not a chance.  So now these many months later, I'm honored to have Daniel on her page.  Happy Friday!  Note:  This is Miggy's home page.  Scroll to the bottom to find our segment.

http://www.thislittlemiggy.com/

Early Summer 2013

Click here to view this photo book larger

Click here to create your own Shutterfly photo book.

Go Slow

He sat in the booster seat of the hairdresser's chair, anxious and brave at the same time.  I know how hard this was for him, how much courage he had to muster to sit in the chair by himself and allow someone to cut his hair.  Daniel is afraid of new experiences, and has associated fears with past ones.  The first time I took him for a hair cut was for his 3rd birthday.  It was nothing less than a disaster.  He cried and squirmed the whole time, but, in the end, he survived it.  He locked that little ditty away in the "don't do that again ever!" file.  

After that, David resumed his role as barber.  Daniel's "shears fear" made it necessary to engage in what he called "nocturnal stealth styling."  Ever try to cut a sleeping child's hair?  Just try it sometime.  One side of his head was bigger than the other for 24 hours until David could get to the other side the following night.    

One Saturday afternoon, I got a wild hair -- no pun intended -- and decided I was going to cut his hair myself.  The only way to reduce his fear is to expose him to it.  I prepped.  I had to because one time I trimmed his bangs so short that it looked like I'd taken a weed whacker to them.  So I watched the YouTube video of a dutiful mom cutting her 4-year-old's hair, got a shiny new pair of  real hair-cutting shears (they are a must), a comb, a water bottle, a towel, a cosmetic brush to get rid of the hair that I knew would drive him nuts, and announced, "Guess what we're going to do today?!"

Since that Saturday snipfest, Daniel has had several hair cuts and each time it is becoming less scary and more enjoyable.  He is learning to trust.  Our hairdresser told him what she was going to do before she did it.

"I'm going to spray your hair with a little water."
"It's just water.  It's just water," he says.
"Now I'm going to comb your hair."
"Comb your hair.  Comb your hair," he repeats, soothing himself.
"And now I'm going to take my scissors and cut your hair.  Okay?"
"Yes.  Go slow," he said.

Go slow.  Go slow.  I've been thinking about this all day.  First, it was huge that he told her to go slow.  Why?  Because his autism affects his expressive communication, his ability to tell us what he needs to be okay.  Who taught him to say this?  It wasn't me.  It wasn't any of the therapists.  This one came from his heart.

To this fast-paced, "I want it n-o-w" world that he is growing up in, he announces, "I need to go slow."  He needs me to go slow.  He needs you to go slow.   He speaks for thousands of autistic children who don't have a voice, who can't say, "I can do this, but let's take it slow.  Be patient with me.  I'm patient with you."  Daniel doesn't feel the world pressing in on him.  He doesn't feel as if he's in a hurry to get something done so he can move on to the next thing.  Daniel is not in a hurry.  He doesn't see a need to be.  It's so simple, really. 

"Slow down.  Take a deep breath.  What's the hurry?" 
(Jeremiah 2:25, The Message)

Grief

I laid on the bed this afternoon as it neared five o'clock, still in my pink bathrobe.  My excuse?  I've worked all day.  I don't need to get real clothes on, bathe, brush my hair, you know, normal things that people do.   

The truth is I didn't really want to get dressed, bathe, brush my hair -- normal things that people do.  For the last many days I've been walking in this almost catatonic mental state, and yet I'm fully functional.  I'm able to care for Daniel, feed him, bathe him, dress him, interact with my husband, make household decisions,  communicate with three behavioral therapists Monday through Friday, keep seven cats, two rabbits and one hamster alive and relatively happy, attend church on Sunday, interact with more relatively happy people, run my business, do the grocery shopping,  do a little bit of Facebooking, manage a whole lot of  e-mails, pay bills (usually), read the Bible, talk to God, and the list goes on.  

I know for certain that I am not the only mother walking around in a trance-like state.  Multitasking is our specialty.  I truly believe this is a gift from God to women.   Moms of autistic children are no different than moms of neurotypical children in our ability to juggle a ten-course day.  We are no different in the expression of our emotions, our love for our children, our desire for their well-being, our commitment to motherhood.  But there is one difference.

Every autism mom goes through a grieving process.  We grieve the loss of a dream.  It's the dream we had for our child before he or she was born, the dream of who they would be --  the dream before we knew about the autism.  I imagined Daniel growing up to be a brilliant attorney.  I imagined him playing the violin in a packed concert hall, me in the audience beaming with pride.  I imagined homeschooling him and teaching him to love the Lord his God.  I fast-forward to when I'm old and he's a grown man.  I imagined Daniel visiting me, him towering over me, my safe, strong son.  He loves me so much.  He cares for me with compassion, love and a right sense of duty.  I feel safe.

The dreams have changed.  Reality hits.  I need to parse my words carefully here because my husband and I know that Daniel has great potential.  He's intelligent, he's funny, he's silly, he's loving, and he's a quick learner.  We are also realists.  We know that he will always have autism.  It is unlikely he will be that brilliant attorney.  Understand that those dreams are a metaphor for something greater.  We can't have a two-way conversation.  He doesn't say, "I'm hungry."  He doesn't say, "I love you."  The reality is that someday we won't be here to ensure his well-being, his safety.  We grieve.  Please don't tell us not to.

The casual onlooker will comment, "But you have new dreams now.  Better ones.  Don't grieve the loss of the dream."  That's bad advice.  The Bible says there is an appropriate time to grieve and an appropriate time to laugh.  It is good to grieve.   I'm not talking about the new dreams.  I'm talking about what can never be, and those dreams I had, they mattered to me.    I thought my time of grieving was over a year ago after we learned Daniel was autistic.  I compartmentalize my feelings a lot.  He has autism?  Okay, I'll deal with it.  It never occurred to me that I could be experiencing grief this far out in time.  But I am.  My husband is.  We both feel it and yet we never even talked about it.    

You hear about the stages of grief.  Let's recap.  They are:  denial, anger, bargaining, depression, and, finally, everyone's favorite, acceptance.  Folks, I thought I was in the last stage.  Imagine my shock and dismay to learn that I've somehow put one foot in Anger and one foot in Depression.  Now, there's a thick mire to extricate myself out of.  Well, well.

Yes, I am angry.  I'm angry when the therapists take Daniel's LeapPad from him and say, "Uh-uh, you have to earn tokens for that, Daniel."  Or when he looks forward to seeing the garbage truck all week long and Monday comes and he's told, "We can't watch the garbage truck until you do this, this and this."  Get out of my house now.  He's 4.  Welcome to my mind.   I didn't harbor this resentment before.  I saw them as helpful, necessary, tough love in action.  Now I just want to rescue him from the oppressors.  "Leave him alone.  He's only 4! You're demanding too much from him."  Something has changed inside of me.  Anger.

April is Autism Awareness Month.  It's Autism Awareness Month every month in our house. This is a crazy, difficult, often humorous (thank you, Lord!), tiring journey we're on.  I wouldn't change it for the world.  I saw a bracelet on an autism website that had a charm dangling from it that said "God has this one."  God is always aware of our son, his struggles, his joys, his heart.  And He is aware of mine too as I hold on for dear life, dangling over Anger and Depression.  He will not let me fall.  God has this one too.

Selah.