Love after all

I hear a strangled scream from one of my children and then the pained cries of the other. I cannot move fast enough to get to them.

Through many tears Hope explains how she was reading her book of Princess Adventures and how Rhema was sitting on the bed and became upset. How she went over and gave Rhema a hug. (When Rhema is particularly troubled the only person she welcomes touch from is Hope.)

And this is what Hope does when she senses her sister is distressed or overwhelmed – she holds on tight and tells her it’s ok. She doesn’t know why she is distraught, why it happens so often, but that doesn’t really matter to her; she just needs her sister to know that she is never ever alone. And nothing that agitates her or hurts her or scares her or saddens her is bigger than this. This love, this hug.

After the hug Hope goes back to her book. Then Rhema screams and throws her iPad across the room. It smacks Hope in the face, leaves a knot on her head.

Hope cries in my lap. Rhema babbles and hums in the background. No one says sorry but me.

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We head to the kitchen for an ice pack. Rhema comes down minutes later, hunting for cheese in the refrigerator. Hope grins wide -even though it hurts – because her sister loves cheese, that’s for sure. She walks over and reaches up, “Are you feeling better now, Rhema??”

Rhema forgets about the cheese for a moment, leans close to Hope. They do the cheek bump. And teach me what I still desperately need to learn – the way of true love.

Love is patient, love is kind.

It does not envy,

It does not boast,

It is not proud.

It does not dishonor others,

It is not self-seeking,

It is not easily angered,

It keeps no record of wrongs.

Love does not delight in evil but rejoices with the truth.

It always protects,

always trusts,

always hopes,

always perseveres.

Love never fails.

~1 Corinthians 13:4-8

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All right now

November 2012

November 2012

Last week I visited Hope’s kindergarten class to read stories and do a craft. (I’m still laughing at myself, that *I* went to school to do a *craft*. I brought Magic Noodles and basically said, “Ok kids… make something.”)

One of the stories I read was the one about Hope and Rhema and high-fives from the Chicken Soup book, Raising Kids on the Spectrum. Before reading it, I provided a little background.

I asked the class if they knew anything about autism, and a girl offered this explanation:

“If you have autism… you kind of do things… wrong.”

Her words took me back to an incident several months ago.

Because of the girls’ schedules, I always have to drop Hope off at school first. This has not always been easy for Rhema. She used to bolt into Hope’s classroom, grab paper and markers and color vigorously. Hope’s teacher, always so kind and accommodating, would even set out scratch paper for Rhema to use.  And Rhema would color (on the paper and the tables) while I helped Hope hang up her coat and lunch and get out her school materials. The problem was she never wanted to stop coloring and leave.

One particularly off morning, I used my best therapist voice and told her she could color for one more minute and then it was time to be all done. Hope and her classmates were already seated and ready to begin their day. After a minute passed I cheerily said, “All done, Rhema. Let’s clean up.” I moved to help her put away the crayons and markers.

She screamed and grabbed me by the collar.

“Rhema,” I said calmly. “It’s time to go. Let’s be all done.”

She let go of my collar, grabbed another’s student’s project and started scribbling on it.

“No, Rhema. That’s not yours. We are all done coloring.”

She grabbed me by the hair and screamed again. The more I tried to talk to her the more resistant and angry she became. Hope tried to help, but Rhema escalated quickly and any control I thought I had slipped away. As she screamed, many of Hope’s classmates covered their ears. One girl looked like she was about to cry and said she wanted her Mommy. I was about to cry and wanted my Mommy.

I ended up leaving an agitated Rhema in the classroom while I ran to get my phone out of the car. Eventually I was able to distract her from the coloring with my phone and walk her outside. It was not a happy scene.

.

“Sometimes kids with autism do things differently. But it’s not wrong.” I told the class last week.

As I learn more about the people in my life with autism I continue to be amazed by their “different”. How creative, resourceful, and brilliant they are, how blessed we are to learn from them.

“Can you imagine needing and wanting to say something but you cannot? Can you imagine how frustrating and challenging that could be?”

I really had not come to talk about autism. I’d come to read bug stories and hand out gummy worms. But I hoped they’d remember, that what I had said had made a difference.

“You know, Hope’s sister has autism. Did you know that they have never fought? They have never said an unkind word to each other, not one. When Hope is sad, Rhema is sad. And when Rhema is sad, sometimes the only one who can cheer her is Hope. They have a really, really special relationship. I’m their Mommy and even I am amazed by it.”

I looked at Hope sitting next to me in the circle. She smiled shyly, but oh my goodness, she shined. Love and joy radiated from her whole body.]

.

The next day the kids were on the playground when Rhema, Hope and I arrived. A girl from Hope’s class ran over to us.

“Hi Rhema!” she said.

My heart swelled, and we grinned big.

When Rhema didn’t make a sound or look at her, the girl asked me if she could hear.

“Yes, she can. She hears you loud and clear. Thank you so much for saying hi.”

Bull in a pottery shop (alternately titled: When autism crashes the party)

Hope had a girly girl birthday party with a small group of friends at a pottery studio.

Shelves of bisqueware reaching to the ceiling, glass cases of handmade ceramic art for sale, a wet clay room, paints and glazes out on tables with serious artists at work, the kiln

As soon as we walked in the door and just before Rhema took off running she and I stared at each other with the same question: What in the world were you thinking???

The party room was located in the back — through the studio and around the corner. B and I were juggling bags of party favors and cookies and snacks, and I lost Rhema several times along the way as she darted around tables and dove under stools.

Things might have gone smoothly if she could have started painting right away. But we needed to wait for the rest of Hope’s guests. Rhema’s anxiety was palpable – the new environment, the sights and smells and sounds – she didn’t know what to do, where to go, what would happen next. She refused to sit, and paced frantically through the studio. I felt my own heart rate triple. How could I be a proper host to Hope’s friends and parents and chase Rhema at the same time?

I discovered we’d forgotten the drinks for the kids. We quickly decided Brandon would go for the drinks, and Rhema would go with him. Stat. But when we put her coat on, she realized she was leaving. She finally stilled, dropped her head and put her fists to her eyes to stop the tears.

My heart wilted, and I knelt down. I saw the battle within her. She understood this was her sister’s party and while every cell in her body screamed Run!, she desperately wanted to stay, she desperately wanted to be a part.

Looking up at B I said, “She can stay. We’ll make it work. Hurry back.”

She continued to bolt and weave through the studio, and I could only follow close behind. To grab her or try and restrain her would result in a wrestling match and Aboriginal-inspired pottery raining down on our heads. Finally Rhema found a window-corner near the entrance to take refuge. She hummed and hopped and would not leave the corner. A studio employee came over and asked if she could help. I assued her that we seemed to be doing fine. At that particular second.

But my mind was on my sweet Hope in the room at the back of the studio, her mother, father, sister nowhere in sight. She’s always understood that Rhema’s needs usually demand more of my attention, but this was her day and she deserved all of me. 

On cue, my sister appeared at the door. “Go,” she said simply. “I’ll stay here with Rhema.”

The evening progressed and Hope and her friends painted happily while the moms chatted and helped out. My sister came back and informed me that Brandon had arrived and taken Rhema outside.

Frustration, anger and sadness swept through me. “She should be here. This is her sister’s party, and she should be a part of this somehow.”

Later Brandon came back, carrying a fighting Rhema in his arms. She was weeping loudly. As he struggled with her, the girls looked up from their pottery. Hope’s big sister was crying at her birthday party. I glanced at Hope, and she just smiled a gentle smile and went back to painting.

I tried coaxing Rhema to the table, knowing that if she saw there was an activity to do she would be ok. “Rhema. Paint? Wanna paint? Look!”

Suddenly she stopped fighting and climbed up to the table. In a flash I grabbed some paint, a brush, and the closest piece of pottery and plopped it in front of her.

It was a mug. And instantly Rhema went to dumping paint inside and stirring her brush around and around with great intensity. I looked at my twin and we burst out laughing.

“Smart choice, sis.”

The way Rhema sees it,  a mug is for putting liquids inside. End of story. Why in the world would you ever dream of painting the outside?

And that’s when the party really started. My relief coming out in the laughter, watching both of my girls at the table, and enjoying the good company of friends. My friend Laurie eventually tried to show Rhema how to paint the outside of her mug with a brush, but in the end my sensory girl was more interested in finger- painting her hair and her clothes.

Overall it was a smashing success… because nothing got smashed. (!)

And most importantly, Hope declared it the ‘best birthday ever!’

Girl in the blank space

When it’s finally quiet at night, the events of the day run through my head. The day’s story is like a sheet of filled notebook paper. There are faces and conversations, there’s my job in the city; our comings and goings.

But most of the day’s page is covered with lines of Rhema and me. I see myself dressing her in the morning, helping her in the bathroom, engaging in our daily tooth-brushing battle. I’m giving her her meds, trying to find something she’ll eat, working us both through a meltdown. I see myself talking intently with her teacher or therapist while holding her hand. I hear her sweet voice saying “Hi, hi, hi” and “Bye, bye, bye” when prompted – often the only words she ever says to me in a day.

And then just as I close my eyes for a brief sleep, I spot the little girl in the blank spaces.

All day she’s been there, just outside the lines. At age four, she’s so independent – getting ready for school, lugging her backpack behind her, buckling herself in. She’s playing I-Spy and telling the same made-up knock-knock jokes that make no sense at all and laughing like it’s the funniest thing she’s ever said. She’s praying for Daddy to come home soon, praying for her sister to talk, praying for Mommy to catch her train. She’s stooping nearby like a faithful friend while her sister is on the floor and 3 adults are trying to help her stand. She’s hugging my legs while I’m on the phone scheduling another EEG appointment because she believes that hugs make everything better.

One piece of the story stands out to me. I’m struggling to get Rhema to keep her shoes on and get in the car. The girls will be late to school, I’ll be late to work. In a moment of frustration I’m not proud of, I cry out loud, “God, why is this so hard???”

Instantly I hear a little voice, on the periphery, praying earnestly:

“Dear God, please help Mommy. Please help Rhema. Thank you. Amen.”

Of course, He hears her prayer.

And when her sister begins to cry, she steps over the line and comes to center. She pats a back, offers a hug. Even though she’s pushed away, she doesn’t seem to mind.  “Don’t cry, Rhema. Mommy’s not mad at you. I’m not mad at you. It’s ok.”

I hold her tightly in my arms for just a moment and tell her I love her times one hundred fifty million and more, knowing she might not ever understand how infinite my love is… until she has a little Hope of her own.

I turn back to her big sister – she needs me more right now.  

My Hope knows. She’s seemed to know since she was born. She’s used to it. And, for the most part, she’s ok with it.

(Thank God she’s ok with it).

She goes back. Back to laughing, loving, playing, and praying in the margins.

Holdin’ it

Hope (worried): Mommy, Rhema’s got my favorite Valentine’s card that Josiah made me!

Me: Well, she’s just holding it, Hope.

On cue, Rhema rips the heart off the front of the card and wipes her nose with it.

Me: Oops.

 .

Hope is a good sister. I mean, a really good sister.

She prays for Rhema to have good days at school.

She attacks her with hugs.

They take baths together and Hope’s a real sport about fudge in the tub.

She cheers every time Rhema says a word or completes a puzzle.

She thinks she is smart and beautiful.

She always tries to protect her: “Mom, Rhema’s doing something dangerous!”

.

So once, a long time ago, Hope was going potty. Rhema, who does not have particularly strong convictions about using the toilet, showed up in the bathroom. Fidgeting.

In one quick motion, I yanked unsuspecting Hope off the seat and yelled,

Hold it!

Then I whipped Rhema’s pants down and plunked her on the potty. Both girls were rather startled. But Rhema went. And as soon as she was done, I returned Hope to the throne. One clean floor, two relieved girls, one slightly guilty mama.

But as I said, that was a long time ago.

The other day I came upstairs to find the girls standing in the bathroom, both with their pants around their ankles. Now Rhema seems to always be partially undressed – that’s nothing new. But Hope likes a little privacy in all her 4 year-old glory.

“What’s going on?” I demand.

Hope points as her sister settles onto the toilet. “I’m holdin’ it for Rhema!”

Hope is a good sister. I mean, a really good sister.

Provision

(Sigh). Another broken flower pot. Seems like everything in this house is broken. I take my eyes off her for a second and something else falls apart. I’ve noticed that I am less patient, easily frustrated. I am short with her; her name a loud groan on my lips, “Rhema!”

It’s happening more and more. She seems to show… something I’ve never seen before… what is it? Remorse? A sadness over the fact that she’s done something wrong even if she doesn’t quite understand it. She drops her head, her bottom lip trembles, and tears come to her eyes. And every time I break a little piece of my heart.

I turn away… these are not my best moments.

All the while I am keenly aware of our little audience of one, who sees everything and hears everything and forgets nothing. My attitude, my tone, my words – have mercy – she takes her cues from me. 

What of my youngest, Lord? Will she be o.k.? She’s been given such a tender heart. An old soul, so perceptive and sensitive to the feelings of others, always quick to encourage.

Will you, God, in spite of me, foster these gifts in her as she lives life with her special sister? Will you keep her from becoming cynical, jaded and burnt out? Will she see her sister not as a bother or burden, but as valuable teacher and inspiration? Will you hold her during times of fear, frustration, embarassment or disappointment? Will you give her a deep bond with her sister – one that does not depend on spoken word or touch. Will you teach her to love without conditon and grow it in her, true and patient? Will you bless their relationship to last long after we are gone?

.

Soft words of comfort whispered, into my heart, into the room: “It will be o.k.”

I turn,

and, humbled, there I find,

hope like a promise.

Sorry

An apology is a good way to have the last word.
~Author Unknown

I’ve long struggled with how to handle conflict between Rhema and Hope. When an offense has been committed, I’ve often observed other parents go through the make-up routine, facing the children to each other and prompting one or both to say sorry and/or even give a hug.

This little drill works somewhat in our house. When Hope is in the wrong, she is corrected and prompted to tell Rhema she’s sorry. In earnest remorse, Hope will say, “I’m sorry, Rhema” to… the air. Rhema is usually long gone. Or her back is turned or she’s engrossed in a new activity. She does not seem to hear, want, understand or care for Hope’s apology.

Rhema’s offenses against Hope stack high by the end of the day. She swipes toys and food. She breaks Strawberry Shortcake’s head off. She rips Hope’s prized artwork to shreds. She colors in Hope’s books. She unintentionally crashes into Hope and knocks her down as she sprints about the house in a continuous loop.

Rhema does not often seem to “get” that she’s hurt her sister, and while Hope has often tried to hug Rhema, Rhema has never hugged Hope. I have tried to get Rhema to give Hope a high-five (in replacement of the make-up hug), but this is usually far from smooth. I have often wiped Hope’s tears and said, “Rhema’s sorry, honey. She’s sorry. She just can’t always show you.”

After Christmas, the girls were playing and Rhema somehow slammed the lid of a toy onto Hope’s finger. It was unintentional, but Hope seemed deeply hurt and cried hard. I stooped to her and tried to comfort her, but she was dramatic and distraught. I grabbed Rhema with one hand as she ran by.

“Rhema, you really hurt Hope’s finger. You have to be careful.” I said, thinking I’d used way too many words.

I looked at Hope. I sensed that for once she just really needed Rhema to acknowledge her, to look at her and see her tears.

Rhema tried to squirm out of my grasp, and then she threw her head back and burst into laughter. The harder Hope cried, the harder Rhema laughed, her body shaking with it.

Uh oh.

“Um. Rhema, say sorry to Hope… Say sorry.”

Until this point, I had never tried to get Rhema to say sorry. Never. I was simply sure she could not do it. Perhaps reading the “sorry stories” of blogfriends emboldened me. And the crying and laughing had escalated to such a degree in the house that I thought, hey, what the heck.

“Rhema. Say sorry.”

Rhema stopped giggling.

The heavens opened and the stars aligned and Hope and I nearly fainted when Rhema said, plain as day,

Saw. Eeee.”

And then she bolted.

Even Hope’s tears were in shock because they stopped dead in their tracks on her cheeks. As we stared, a wide grin popped out on her face.

“She said sorry!”
“She said sorry!”
“Rhema’s sorry!”

We danced around the living room, saying it over and over.