Love that sits

Meeting the different wants and needs of my girls is sometimes like trying to walk a tightrope and juggle at the same time.

It often seems like Hope sacrifices or gives up more. But there are times it is clear to me that Rhema is so in tune with Hope’s wishes. She chooses to be uneasy or endure the pain of overwhelm for Hope’s sake.

During our time in Wisconsin, Hope wanted just two things: to go to an amusement park and to go swimming. Rhema was having the kind of week where parks and pools would be extremely difficult for her to manage. Rhema enjoys swimming, but the downstairs pool at the hotel was on her avoid-at-all-costs list. We’d been unsuccessful in getting her to go down, which meant Hope could not go swimming. (You know because I can’t be in two places at once, juggle or walk a tightrope).

Then, on our last afternoon, Rhema let me put on her swimsuit. We walked downstairs, hopeful with every step. She covered her head with her arm as if to shield herself from the sensory onslaught. She found a place against the wall and remained there. She never got in the water but stayed nearby all the while her sister splashed with new friends. She sat and waited for Hope.

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I’d heard Baybeach Amusement Park was small and not so busy during school hours. I told Hope we would *try* it, and she squealed with excitement.

“Hope, we may drive into the parking lot and then drive right back out. I can’t promise anything. We just have to see…”

“I know. That’s totally fine.”

(One of the many things I adore about Hope is her thankful heart. As much as she wanted to go, I knew she truly would be ‘fine’ if we couldn’t).

In the parking lot, Rhema seemed up for it. So we went, we saw, we conquered. We lasted for four rides. For one memorable, precious, fun-filled hour. Lo hicimos, baby.

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On our way out Hope happily hugged her sister, “Thank you, Rhema.”

The hotel had corridors that seemed endless. Rhema was not particularly fond of our room – I had to barricade the door to prevent escapes – but she enjoyed roaming the long halls. Whether coming or going she always flopped in the same two places. One of her flop-spots was just a few feet away from our room, opposite the door. When Rhema flops, it’s often best to wait her out and after a time help her get up and keep moving. Sometimes it took an hour or more before she was willing to move. She spent a LOT of time in those hallways.

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Once when she flopped in the spot near our room, I went in to prepare dinner and left the door open so I could keep her in sight. In spite of all our little victories, I was weary. Weary of seemingly simple things being hard. Couldn’t we just once walk down the hall like regular people?

I looked up…

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One day I hope they know even just a little how grateful I am for the lessons they teach about real love. Gospel love. Love that sits with you and waits for you. Love that gladly lays down self and gives and gives again so that the other can have more. Love that “always protects, always hopes, always trusts, always perseveres.”

How can we thank God enough for you in return for all the joy we have the presence of God because of you.
~1 Thes. 3:9

Rhema and RPM

Our week in Green Bay for RPM training turned into something bigger than I imagined. I can’t speak for the girls but for me so much of it seemed like a struggle – from Rhema’s health issues to even just getting there. I received daily(!) notes of encouragement that helped me put one tired foot in front of another. I/we feel humbled, undeserving and grateful to be on the receiving end of such support and prayer. Thank you, thank you.

I’m not going to spend time here explaining the methodology and theories behind Rapid Prompting Method (for more information on Soma RPM – click here and here ), but I would like to share some of my observations and impressions after seeing it in practice with Rhema.

Presume competence. It’s something you hear a lot in the autism world, and until this week I don’t think I really grasped it. Douglas Bliken describes presuming competence as a framework that says “…approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.  Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”  I’ve realized that I still have much to learn when it comes to seeing and understanding my daughter. I always try to dream big for her and yet in the same breath I underestimate her.

At RPM camp, Rhema’s teacher Erika taught her grade level material. Rhema was taught grade level material. (Yes, I said that twice). I learned along with her as she received lessons in weather, continents, bones, the polar habitat, William Penn and the Quakers, etc. The same child who has not reliably counted to ten in her life worked on subtraction and addition and carrying-the-one and word problems and fractions. Fractions, y’all. Hope said, “Hey, I haven’t even learned fractions yet!”

Watching my girl – the one who has the expressive language of a 1-year old… the one with bite marks covering her arms… the one who has never attended a typical school or sat in a typical classroom… the one who needs help with every part of her day… the one who cannot complete any type formalized testing – watching her learn about science and history and math like it ain’t no thing was just about as exhilarating and nerve-wracking and hope-filling as anything I’ve ever experienced. For Rhema as well, I believe.

Well, how can we ever be the same now?

After the sessions I spoke to her and of her differently. I spoke to her as I would any non-autistic person. And I started believing that everything I said was truly understood whether she demonstrated understanding or not. She may not respond in a way I expect or recognize but I am no longer assuming she’s not hearing or comprehending. (I’ve said this for years right here on this blog, but it has taken me so long to really get it.)

Bag of tricks. During her sessions Rhema hummed, rocked, crawled under the table, closed her eyes, hit herself, fought for markers and paper, tried to climb over her teacher, put her fingers in her nose and mouth repeatedly. And yet her teacher continued with the lessons, adapting her ways of engaging Rhema constantly. Never once did she conclude that Rhema was not smart enough to comprehend the material. Instead she believed the onus was on her to creatively find ways to help Rhema focus.

When Rhema was presented with choices, she closed her eyes and would not open them. Erika said, “I know it hurts to look.” And she pretended to write the words on Rhema’s arm with her finger, spelling aloud as she did. When Rhema’s humming grew loud and she seemed to be tuning her teacher out, Erika changed her own voice to a whisper and Rhema softened her humming and seemed to listen better. Other times Erika changed the beat and tempo of her voice. When she felt like Rhema’s mind was racing, Erika spoke very rapidly as if to keep pace, and Rhema responded. When Rhema seemed to be tactile defensive and lacked the motor skills to form a point with her finger, Erika put tape on the paper (sticky side up) and helped shape her hand, and Rhema pointed to the correct answer. When Rhema seemed entirely distracted by her marker, Erica used the marker to draw dust particles and teach the word ‘vapor’, or she would draw a circle, shade a portion of it and teach a lesson on fractions. Erika’s goal was to outpace the stims and the distractions to such a degree that the lesson actually became the stim.

By the end of the week, with a little assistance, Rhema was able to point to letters that spelled out words on a rolled letter board.

Watching Erika reminded me of Rhema’s teachers at home. They are willing to do whatever it takes to help her learn and grow. They work miracles everyday as they come up with innovative ways to teach my girl. They cheer her on when something works. And when it stops working, they find still new ways to guide and teach her. They never stop working, never stop trying, never stop believing.

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Favorite color. After days of academic work, Erika asked Rhema about her favorite color. As soon as Erika asked the question my heart began to pound. For so long I’ve wanted to ask Rhema a question like that and have her answer me. Erika presented choices to Rhema and prompted her to select one. For e.g., the choices would be Green, Blue, or Something else. It took quite a while to narrow it down, but in the end Rhema consistently selected ‘Red’, even when asked the question in slightly different ways.

I was dismayed. I was certain her favorite color was yellow. Immediately doubts began to fill my head.

During a break I said to Hope,

“So Rhema said her favorite color is red.”

“Yeah,” she said.

“But I thought her favorite color was yellow. When she was two she would always hoard the yellow Legos.”

“Yeah. I thought her favorite color was yellow or orange because she always eats the yellow and orange candy hearts on Valentine’s Day.” Then Hope said thoughtfully, “But when I was three my favorite color was purple. And then it was pink. And now it’s blue. Now Rhema’s favorite color is red.”

Leave it to the little kid to make it plain.

So I let go of what I thought I knew about Rhema and gave into the joy of realized hope: My daughter shared something with us, something about her, something I’ve always wanted to know. Rhema loves colors, and right now her favorite color is red. (!!!) I know this because she told us.

At the beginning of our trip, Hope wondered “Is it gona be worth it?” Honestly, I think deep down we hoped Rhema would quickly catch on to the RPM method and find her voice. It didn’t exactly happen that way. Instead it seems it will come bit by bit, day by day, on her own perfect timeline. I suspect there will be many setbacks and many gains, but even more belief.

For now, we wait and we work, with more hope than ever.

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Every minute

Last week I found her sitting in a chair with her eyelids fluttering and her hands twisted in a sort of frozen, palsied manner. Even though she has an epilepsy diagnosis, I did not want to assume it was a seizure. She’s done funny, stimmy things with her hands and eyes before. Still I knew, with a sinking feeling, that a Shift had occurred in Rhema. For us, that means a period when our girl suddenly changes before our eyes and behaviors become extreme and we are literally just trying to make it through the day and B and I are scratching our heads wondering what in the world happened?

The timing of the Shift was not ideal. We were already committed to a weekend retreat on the Cape hosted by Brandon’s new company. Following that we’d fly in different directions – Brandon to his work site and the girls and I to Wisconsin for Rhema’s RPM training. Over the weekend we took her to the ER hoping we could rule out anything medically. We received a LOT of help with her gastrointestinal issues, but we left knowing that something was still not right with our girl.

Rhema flew on an airplane 6 months ago and did very well. This time I called ahead to the airport to ask for assistance and they kindly provided someone to help us through the security check. The moment we walked into the airport things went downhill. Rhema could not wait in line and took off running. Hope and I caught up to her, but when I tried to redirect her she flopped on the floor. I knew that by touching her and trying to help her up (when she was already overwhelmed) would turn into a struggle and further escalate the situation. Often the best thing to do is to wait, give her time until she’s able to calm and then continue on… even just a few steps.

But she couldn’t lay on the floor of Terminal A all day. We needed to check bags, get through security and get on the plane. I tried to scoop her up and the rest is kind of a blur.

I remember us somehow getting to the security checkpoint and 3 airport employees trying to help me handle my Rhema screaming, flailing, kicking, knocking things over – well-intentioned, but unfamiliar hands on her. I remember a TSA agent barking at me to restrain my child. I remember someone saying she had to take her backpack off but she was so escalated I couldn’t get it off. I remember all of the people staring at us, unable to hide their horror. I remember inadvertently almost mooning them all because I didn’t wear a belt because I didn’t want to set off the metal detector. I remember the airport staff warning they wouldn’t let us on the plane if Rhema could not calm down. I remember looking for our strewn boarding passes, my bag, and Hope.

I don’t remember how we got through security, but I realized we’d made it to the other side just as Rhema got her bearings and took off for an escalator. The woman who had been sent to assist us apologetically told me she had to go and warned me not to let Rhema run back through the security checkpoint or we’d have to go through the whole thing again. Hope and I kept up with Rhema and tried to keep her safe without touching her. Too many doors, too many exits in airports. We arrived at the gate just as people were getting off the plane we would be boarding. Rhema ran to the gate door as someone yelled, “No, she can’t do that!” I all but tackled her right there and held on for dear life as she screamed and kicked. Hope sat down beside me.

“If we… if we could just sit here,” I said to a Delta employee who rushed over. “She’s just overwhelmed right now… and afraid… and having trouble waiting. But if we can just sit here, I’ll hold her and she’ll calm and feel safe again.”

The woman said, “Ok, but you’ll have to move a bit out of the doorway so people and a wheelchair can get by.” But Rhema’s foot was hooked around the door.

In another century or so I will laugh at the surprise on people’s faces as they deplaned and stepped over us, panting and sprawled out on the floor at the gate door.

A young woman ran over to us, compassion written all over her beautiful face. “Can I help? Is there anything I can do? Anything at all?”

I smiled for the first time that day. “You’re sweet. Thank you. We’re fine. Well no, we’re not fine. But I think… I think we’ve got it. Thank you so much for asking.”

The woman from Delta stayed with us on the floor the whole time. She talked to Hope about school and the teddy bear Hope was clutching. She talked to Rhema about the letter R and how her name began with R and how it was her favorite letter, too. She thanked Rhema for waiting so well. We chatted about her seventeen year-old daughter. I shared about our trip to Green Bay and my deep desire to help Rhema communicate better. She questioned if Rhema would be able to tolerate the flight. I told her she would be ok once we got going, and she believed me. We finally boarded, and just before take-off, she brought a handful of coloring pages, activity books, crayons and other trinkets for the girls. Thank you, R.

I want people to know about the young woman who bravely, kindly asked if she could help. I want people to know about R, the Delta employee who sat with us. The details of our hard day may fade in time, but my girls and I will always remember their kindness.

Things did not get easier. There was the layover in Detroit, the second flight, baggage claim, the rental car process still to get through. I usually have some clue as to what to do. I usually have courage. At that point I had nothing left. I prayed, Every minute, God. I need your help for every minute. Every step. She needs you for every step she takes. It wasn’t easy. But every minute we made it, I breathed thank you. Every minute she waited and every minute she held back a scream was another minute of thank you. Every single step she took without flopping or bolting or fighting was a step of victory. And every minute we fell, we were lifted.

Thank you so much for all the texts, emails, FB comments, prayers as we have made our little journey to RPM training in WI. Your encouragement, your hope for Rhema and our family has meant more to me than words can say. Thank you!

For the sisters

It’s important to know you are not alone.

When Rhema was first diagnosed with autism she received over thirty hours of in-home therapy. Managing her schedule was like a full time job, and our lives seemed very isolated. The first time I went to special needs support group I studied the other mothers. They seemed… sane. They were organized. They were knowledgeable. Their hair was brushed. They were strong. They were beautiful. They could cry. They could laugh. They were still standing. And as I watched them I realized that maybe autism wasn’t my ‘fault’, maybe it just happened, and maybe I would be ok.

Since then I’ve been blessed with a community of friends – in real life and virtual. We share in each others’ journeys, and it is an indescribable gift. My friend Judith said, “It makes it easier somehow knowing our experience isn’t just ours. To know that we are not the only ones who struggle and who rejoice and who struggle again and rejoice again. Our unique cycle of love, pain and hope is something few can understand…” But we have each other.

When someone you love self-injures, it tears your heart. When someone you love self-injures and it seems you are the trigger, it’s gut-wrenching. The other day Hope had to cough several times, and Rhema became so overwhelmed and upset that she hurt herself very badly. Hope got a bag of ice for Rhema’s arms and retreated to her room while I cleaned up. Later when I called Hope down, her face was covered in tears. She said through sobs, “I feel so guilty when she hurts herself. It’s all my fault.”

Oh no. Her sadness broke me. Hope has asthma and allergies. She can no more help her coughing than Rhema can (at least right now) help her reaction to the coughing. I tried to comfort her and assure her, but it didn’t seem to help. Then our precious friends Katie and Brooke and their sweet mama Jess came to my mind. “Hope, I’ve never had a sister with autism to love. I don’t know what it’s like to be you. But you know what? There is someone who knows what it’s like. She has felt like you do and said some of the same things you’ve said.”

Brown button eyes looked up at me, “Who?”

“Katie.”

Katie. Kind, beautiful and talented Katie, whom Hope looks up to and adores. They’ve been friends since Hope was just a toddler, and Katie has never let their six year age difference stop them from having a blast when they get together.

Her eyes filled with hope, “Really??”

“Really.”

Later I recounted our troubles to Jess and before I could ask, she said, “Can you guys come over? Or can Katie call Hope?”

Katie called Hope. Hope told her about what happens with Rhema when she coughs. (Hope tries so hard to be strong. It was enlightening for me to hear her talk about it with Katie). Katie had the same story in many ways – watching things unravel, watching her sister hurt – simply because she coughed.

Katie said, “I get it.”

And Hope said, “Yeah.”

“It makes me sad when my sister hurts.”

“Yeah.”

“But it’s not your fault, Hope. It’s not your fault.”

And even though it’s hard for her to believe that it’s not her fault, Katie said it wasn’t, so Hope whispered, “Yeah.”

Sister-friends, that’s what they are.

And their mothers are thankful and sorry at the same time that their girls share struggles like these.

And so glad they have each other.

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Hope and Katie, 2011

Help you speak

It’s been a long time coming.

Next week we will be in Green Bay, WI. Rhema will be receiving special training through Rapid Prompting Method (RPM) – a teaching technique designed to help people with disabilities improve their communication and academic performance. I’ve researched it and read about it for years. I’ve corresponded with friends and others who use RPM with their students. And I’ve been encouraged and inspired by many non-speaking people who have found a way to share their beautiful minds through their writings.

For years I thought, One day I’m going to take Rhema to Texas to see Soma – the mother who pioneered this teaching method for her autistic son. Finances and multiple military deployments always put it on the back burner. When Brandon came home last summer my desire for Rhema to be exposed to RPM fanned into an internal fire. We waited for months to get a training slot at the Texas center, but the classes always filled within minutes of opening. Friends prayed that a door would be opened – and finally it was in Green Bay, WI.

Brandon will be away on business so it will just be the girls and I traveling to Green Bay for a week-long camp. At first I told Hope that she would have to stay with the grandparents.

“But… but I really, really want to go!”

“I know, Hope. But I also need to be trained so that I can work with Rhema when we get home. I don’t want any distractions. I’m going to need to concentrate during the sessions.”

“I’m going to be concentrating, too,” she said simply. “And taking notes in my pink notebook and asking questions at the end.”

I laughed. Of course. Hope is the girl who reads Rhema’s home notes from school more intently than I do. She communicates with Rhema better than anyone I know. They play school and games together and Hope is always teaching and always studying her sister. How could I forget: I needed Hope to be there with us.

Rhema already receives a wonderful education at her school. The best. I am hopeful RPM will be another tool in her belt to help her communicate. A very gifted therapist and friend is interested in helping us practice RPM with Rhema at home when we return. There is a real possibility for her to learn to spell and type, to finally have a voice. I believe it. This is an important time for her, and I feel like this could be a life-changing week for us.

Brandon’s parents and my parents have insisted on contributing to the cost of travel and training. It means a lot to me – how they believe in her! My father and I talked about it recently:

“She had another speech evaluation done. Spoken words are just so hard to come by, Dad. Her mouth and tongue can’t make the letter sounds. It seems like she’s been working on “p” and “b” for years… never mind the other 24 letters. It’s just hard for her, but I know she has so much inside, so much to tell us.”

“Rhema, Rhema.” He let the sound of her name hang in the air. “Her name has such a powerful meaning. A living expression of word. I still believe God has amazing plans, great things in store for Rhema.”

So we are ready to go.

I’m so thankful we go with the prayers of many.

“O Lord, I have never been eloquent… I am slow of speech and tongue.” The LORD said to Moses, “Who gave man his mouth? Is it not I, the LORD? Now go; I will help you speak and will teach you what to say.” ~Exodus 4:10-12

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Psalm of a daughter

Hope begs me to wake her up twenty minutes early every morning so she can do her “devotions.” It’s her quiet time to read the Bible, write and pray. It’s become a nice little ace in my pocket – she’s such a procrastinator at bedtime. So I say, “If you don’t go to sleep I’m not going to wake you up twenty minutes early because I’ll think you need more sleep.” She instantly jumps in the bed and pulls up the covers. And I laugh like the purple pie man, “Ha, ha, haaaa.”

I love her eagerness for quiet time in the morning. At age eight, she is sincere and unashamed in her faith, devoted. I pray she will always be. That she will know His faithfulness stretches across all the days of her life. That she always knows she is His, a daughter of love.

Recently I dug out one of my old devotion journals and showed it to her. Pages and pages of my reflections on verses and prayers I’d prayed over 20 years ago. (Interspersed with some notes to boys, I might add. One says, ‘Please don’t call me anymore.’ But I guess I never gave it to him(?)) Pages of the heart of a girl trying to love her God.

Then Hope showed me a psalm she’d written, and she said I could share it here. (Oh, and she’s proud of her *creative* spelling).

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My Psalm of Prase

Date: 4-11-15

Dear God,

I thak you for all I have, a warm home, a great family and everything I need. You are a great God, so I shall prase your name and none other. You comfort me you protect and you gied me. Thank you Lord for everything. Your earthly dater, Hope

Forgiven much

“He will again have compassion on us…
and will cast all our sins into the depths of the sea.” ~Micah 7:19

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Photo: Kerrie James Photography, 2013

We have a problem.

When Hope coughs Rhema gets upset and hits, scratches or pulls Hope’s hair. Hope has asthma – the kind that’s landed her in the hospital in the past – and this time of year her asthma and allergies are always troublesome. We’ve encouraged her to keep her distance when she needs to cough. But often she doesn’t even realize she’s coughing until it’s too late.

On Easter Sunday we sat in a circle at Children’s Church while my friend taught the lesson. Rhema sat in my lap and colored and hummed and tried her best to stay in the circle. Hope, sitting next to us, coughed. Before I could stop her, Rhema reached out and hurt her sister. Hope’s eyes silently begged me not to make a scene. So I just leaned over and kissed the spot of her head where she’d been scratched and whispered “I’m sorry, baby.”

My heart breaks for both of my girls. Rhema’s sensitivity to sounds seems to have increased over the past year and sometimes she is simply unable to cope. Some noises cause her to wilt in frustration; others cause her to lash out. With the myriad sounds in her day – predictable and unpredictable – I cannot imagine how difficult it must be for her to process.

I was driving the girls home from school when Hope coughed in the backseat. “Rhema, stop! Stop!” Hope pleaded as Rhema grabbed her head. I frantically pulled over and pried Rhema’s fingers from Hope’s hair. These are the moments that haunt Brandon and me and keep us up at night. Hours later I can still hear Hope’s cries in my ears, still see her tears.

At home I said, “Rhema, I want you to say sorry to Hope.” I didn’t know what else to do. I just felt helpless and frustrated and angry for both of them. I held Rhema still while Hope stood there quietly and I prompted Rhema several times, Say sorry.

Finally my girl uttered two soft sounds. Sorry is such a hard word to say when your tongue doesn’t work the way it should. But she tried. It didn’t sound like “sorry.” But we knew. And really she never had to say it. We knew she was sorry. She doesn’t mean to hurt, we know how very much she loves.

And then she put her hands to her eyes and cried. I froze. To see her pain and remorse in this way and for us understand it was a new experience. Hope wrapped arms around her, “Oh Rhema, I forgive you. I forgive you. It’s ok.”

I hugged both of their curly heads to my heart.

Forgiveness so costly, yet freely, joyfully given.

“Dissolved by thy goodness, I fall to the ground. And weep to the praise of the mercy I’ve found.*” I’ve known it, I know it every day. As I stand speechless and guilty and sorry of many things. Seventy times seven times, He pays my debts and washes them all away. I am welcomed into open arms of mercy, covered in unfailing love.

Later I asked her as we sat at the kitchen table, “Hope, how does God forgive?”

“He forgives forever.”

And again and again amen.

*Thy Mercy, My God by Sandra McCracken