M O M

I sit quietly with Rhema in a broken recliner. She used to rock in it, back and forth and back back back, until it flipped over and knocked a hole right through the wall. Now the chair leans to the side like a drunk man and stuffing spills out of it with every rock.

It’s been a hard night. Sometimes a frustrated body leads to bursts of aggression. We sit, after the storm, comfortable in our silence. Her hand guides mine over paper. She wants me to write something. I don’t know what, so I write her name because I love her special name and I’ll not ever grow tired of seeing her write her name. She scribbles over the letters.

“Now write your last name.”

This is something new she’s shown us (at home, at least). One afternoon Dana wrote “Rhema”, and then Rhema wrote her last name as if it were no big, incredible, mama’s-whooping-and-happy-dancing thing at all. Once upon a time her academic goals included learning to use a stamp with her name on it because learning to write seemed out of reach for her.

Dana saved that paper for me so I can pull it out and smile and I’ll never throw it away.

This night she understands exactly what I’m asking. She writes her last name again. No copying, no tracing. Remarkable accomplishment, years of hard work in letters on a crinkled piece of paper. All things are possible.

Then she writes M O M.

My heart stills and tears fill my eyes.

I remember the days of extra speech therapy on weekends. I’d walk into the office at the end of the session and her therapist would say, “Rhema, where’s Mom?” She’d lean close to Rhema and try to get eye contact and urge her to look in my direction. “Where’s Mom?” I’d smile and wave my hand in a goofy way. Me. Over here. I’m the mother. Rhema never looked. She failed the find-your-mother test every time. Although I’m pretty sure she chose not to acknowledge the question because she was insulted by it. Of course I know where my mother is. To this day, she does not call me by name. She can be prompted for some verbal approximation of “Mom”, but she’s never called to me.

Her teachers have been teaching her to write “Mom”, “Dad”, and “Hope” for quite a long while. In the past she’s worked on a picture ID program where she points to pictures of us when prompted. But I was not sure that she really associated those 3 letters with me.

She does. She does. Of course.

And on a hard night she knows how to bless my heart and communicate love.

For the first time in eleven years I truly feel named by my girl.

So honored, so proud, so very grateful to be M O M.

Hers.

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Photo booth, 2010

“…I’d never forget you—never.
Look, I’ve written your names on the palms of my hands.”
~Isaiah 49:16, The Message

“…I have called you by your name. You are mine.”
~Isaiah 43:1

Letters from my daughter’s therapists

I recently read a piece entitled “To My Son’s Autism Therapists.” I can relate well to the writer’s words: she wants to convey to her son’s therapists how very personal their work is to her. How day and night she grapples with worry, fear, exhaustion and hope… and much of that hope lies within their hands.

I gather that the writer’s child is young. I want to tell her, “Hold on! If your experience is anything like ours, your child will lead you to discover a special class of people you did not know existed. You will find teachers and therapists who care so much and teach so well that your son’s gains, challenges and well-being become deeply personal to them. You will find people whose compassion, commitment, creativity, and belief in your child’s ability to excel never fails.”

One mom wrote a letter to her son’s therapists. This mom (as in me) has cherished letters written by therapists and teachers to us. Honestly, there was a time I did not know how a child who lacked language and social skills and needed one-on-one support with every part of her day could have rich, meaningful relationships. But now I know: she is a gift to others, and her teachers have shown me that again and again. She is loved. I am very grateful that my girl is surrounded by people who not only teach her, but treasure her, just as she is.

A sample:

From A-

Dear Rhema, Over the past four years I have spent a lot of time learning, playing and laughing with you. You have come so far, I am so proud of you! I am so grateful for all of the joy you have given me. I know that with all of the wonderful memories we have made together, I will absolutely never forget you. Keep up the incredible work, Rhema girl.

From S-

As you know, Rhema and I love to color together at school every day. She’ll pull my hand in and have me write words for her to copy. I do everything from mom, dad, Hope, and more, but sometimes I write her teachers names (including my own). The other day during one of our coloring sessions, she scribbled [my name] across one of her papers, and it didn’t even matter that the letters were in a different order. …Rhema and I, we just connect and she is so important to me. I just wanted to share this with you because it meant the world to me that she wrote it on her own and I feel unbelievably lucky to get to work with her every day.

From A. M.-

It is hard to find an appropriate time to say it with the rush that is the morning and afternoon drop off/pick up routine, but I am so proud of your Rhema every day. I see her eyes get wide with understanding, I hear her try new words, and watch as she follows a new direction for the first time with the same accuracy as if she had done it a million times before. I can’t believe how much she has grown these last few years and I am so thankful to be a part of her learning and growing. Thank you.

From H-

Whenever I am asked why I love being an OT I always talk about teaching Rhema to write her name. I keep the letters at my desk to remind myself why I do what I do and how rewarding and lucky I am to get to work with these kids. Everyday it reminds me to do my best and that little miracles happen everyday. Thank you for letting me be a small part of your children’s lives. They are both amazing little girls who are going to have positive influences in many lives. They already have both taught me so much!

From C-

Rhema was taking a break at her desk, and I was tearing pages out of a coloring book for her to color one by one. I handed her a word search which she instantly scribbled all over and held up to give back to me. But then, something caught her eye and she began to trace letters.

When she handed me back the paper, ready for a new one, I saw that she had somehow, in the middle of the word search and among the scribbles and scrambled letters, found and traced the word “teamwork.” There were no other letters traced in the word search, and no letters missed from the word.

I was amazed! And I still am. Of all the other combinations of letters she could have traced, she not only found a word, but she found the one that best sums up my experience as one of her teachers. Teamwork.

Everyone all together, for Rhema.

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Picture on the wall at school.

{The walls of a special education school are decked with large photos of the students. Near the front door is a picture of Rhema taken a few years ago. Every time I walk into school one of the first things I see is her picture and it speaks volumes to me. It tells me that she belongs, that her teachers are there for her, and she and her fellow students are an inspiration them. It tells me that no matter what kind of day she’s having, she is treasured and celebrated every day. And really, what more could I want?}

My letter to her teachers and therapists boils down to simple words that can never tell it all: THANK YOU.

Enough

“I have indeed seen their misery… and I have heard their cry. I know their sorrows.”

We’ve been reading the story of Moses. Rhema and I. I write that casually, as if it is nothing new. But we sit and I read to her and ask her questions about the story (by writing out choices on paper RPM-style), and I believe that she is listening and understanding. Well, that’s never happened here before, and it’s remarkable.

At first there was resistance (as in, what is my mother doing to me??”) Now it seems the time is precious, just 20 minutes or so, just for us. For the first time in eleven years I get to teach her in a way I’ve never been able to before. When we’re done, she pushes my hand toward the pen; she wants to keep going.

I picked Moses. Because he too had to find his voice.

I write out the words God spoke to Moses through the burning bush: I have seen, I have heard, I know.

He tells Moses that He has come down to rescue the people of Israel. He is sending Moses to deliver them from their slavery and oppression. Moses protests, saying, Who am I that I should do this? No doubt he is thinking of his inadequacies, his unworthiness, past failures and fears, his “slow tongue.”

God says, But I will be with you.

I ask her about it, writing out different choices on paper. What did God say to Moses’ objections?

She waits. She lifts her hand and slowly, purposefully points. That beautiful, hard-won point. Her finger presses the words, But I will be with you.

“He will, Rhema,” I whisper. “Always. He will.”

When I cannot, He will.

And if she remembers in the moments when she feels so alone, little girl standing at the window, always on the outside looking in, that she is indeed seen…

And if she believes that when she can’t speak, that she is heard…

And if she trusts that when no one understands her quiet sorrows, that she is known…

by the God who wonderfully made her and whose love for her is indescribably extravagant, measureless, endless…

that is enough, more than enough.

No matter what life brings if she will touch those words, cling to them, hold them close to her heart,

But I will be with you

Then this mama’s heart rests and rejoices.

She has all she’ll ever need.

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Keeping on

So one night Brandon and I decided to watch a movie my mother had recommended called, Facing the Giants. This was years ago – Rhema was two or three. I think of that time, the span of a year, in which Rhema was diagnosed with autism and then with epilepsy as the year I could not concentrate. We were immersed in 30+ hours of ABA, speech therapy, OT and any other therapy I could find. I remember walking around the grocery store thinking, ‘My daughter has autism.’ I recall sitting in church as people sang and the pastor preached and the only thought running through my head was, ‘My daughter has epilepsy. My daughter has autism.’

(What’s so interesting is that even now, after all these years of continued therapy, IEP meetings and appointments and the myriad days and minutes of living life with my beautiful, complex, amazing girl, the shock of her autism can still knock the wind out of me).

Anyway we put in this movie starring a Christian film director. The suppporting cast was made up of volunteers from a Baptist church in Georgia. During the first twenty minutes of the film, B and I laughed because we thought the acting was so amateur. By the end of the movie we were bawling like babies.

There’s this part in the movie where a boy has to do the death crawl across the football field while he is blindfolded and carrying another team member on his back. The boy keeps crying out, “It’s too hard! I can’t do this. It hurts!” And all the while his coach is beside him, yelling at him to keep going and not quit. Call me crazy, but at that time in my life when my world had fallen down, when I seemed immobilized by a haze of grief over my child’s diagnoses, I felt like God was talking to me… through a small-budget football movie… telling me to ‘keep going.’ That He was with us and would get us down that field.

(I know nobody ever has time to watch videos. But in case you do, this is the scene.)

As Rhema and I try to do RPM at home I am again reminded to press on. It’s not going so well for us, this RPM. (I’m chuckling because that is the understatement of the year). I don’t feel like a natural teacher. I get discouraged and feel like I lack the skills, patience and perseverance to teach her well. My gratitude and admiration for her teachers and what they do every day has increased even more.

From Rhemashope Faceboook page:

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We’ve had many days of (ahem) less than successful RPM sessions, but Rhema and I seemed to really make some progress today! A precious mom in Australia gave me some ideas to try, and by the end of the session my girl was pointing to letters on a letterboard to spell words. (Thanks Bec!)

Afterwards Rhema had a huge smile stuck on her face. She is not a big smiler. Brandon said, “She seems really happy! She can’t stop smiling!”

I think she knows. We’re not giving up. We’re going to keep trying and working hard to help her find ways to communicate. We’re getting better and closer every day. And I think tonight she really grabbed hold of that hope.

Joy.

When I am most overwhelmed by the road before us, it seems then that Rhema will show me something. Something that speaks louder than words. In her own, amazing Rhema-way she encourages me that she is learning and growing and communicating all the time.

I think it’s her telling me. And me telling her. And God telling us…

Yes, my love. I know it’s so hard. Today we are going to keep on.

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!