My writer

I know I’ve gone on and on about Rhema learning to write. It’s been such a journey, years in the making. I cannot quite put into words how triumphant and awesome it feels to see the dream come true.

Would you indulge this grateful, super proud mama?

(If you turn up the volume you can even hear her sweet voice.)

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Rhema writing for Heather, the teacher who always believed she could:

Heartened

It seems like I’ve been blogging for a l-o-n-g time. As I look back over the stories – 421 posts (!) – one precious thread stands out beautiful and bold.  

The friends. (You).

The friends, online and in real life who have stood alongside us, through every high and every low, through seizure-free and seizure-full, through progressions and regressions, through deployments and homecomings… we’ve had a faithful community who has prayed for us, cried for us, laughed and danced the happy dance with us.

I was starting to think it might be smooth sailing from here, but it seems like we’re entering another loop of challenges. But I have been blessed beyond measure to look back and to read and remember the supportive comments and encouraging words collected like stepping stones over the past four years.

Whether you’ve left a kind word, or just read along and nodded a “Me too”, or lifted up a prayer, you have bolstered me, helped us press on. You have helped us celebrate our children.

How can I say thank you?

Laura, Rhema’s helper, is one of God’s lavish provisions in our family’s life. She is always taking pictures and recording little miracle moments for me. Last week she captured on her phone about 2 minutes worth of what years of hard work by teachers, therapists, and the support of family and community have made possible.

Some who do not know the story may totally miss the significance of it; but thanks be to God my little one has an amazing cheering section that spans many miles. That just boggles my mind and fills my heart! I can share it all here and know that others “get” this and share it back, understand what it means to me, and genuinely rejoice with us.

(And isn’t it funny how our kiddos always, always feed us morsels of hope and wonder, no matter how hard the day?)

When I watch this simple video – and it is the marvelous essence of reciprocal play – I see that Rhema cannot do it without Hope, and Hope cannot do it without Rhema.

Thank you for faithfully helping us do this.

Extravangant Christmas

One of the perfect themes of Christmas is giving. The Son of God came down to give life, peace, and joy to all who accept His gift. All around, this season, we have opportunities to give and share with others. I will never forget how my friend Jess and her family and so many others gave and gave and gave to us… 

The following was originally published in December 2009.

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Holidays have been kind of bittersweet for me the past few years. Rhema still does not “get” Christmas or birthdays. And, honestly, it took some of the fun out it for us as her parents. Why make a big fuss when Rhema seems to have no clue or care about such things. Last year we did not even put up a tree, and instead relied on the grandparents to do Christmas (as we have done for the past few years).

This year has been different. With Brandon deployed to Iraq this Christmas, our annual trek to Michigan was not really an option (how we miss them). This year it has really been my desire to make the holiday special and meaningful to Rhema and Hope. But I had no idea where to start – I’m not naturally good at this stuff.

Enter Jess and her family. Luau came over and put up our tree, and Jess gave me lots of ideas and sent Rhema-safe decorations (pom-pom garland and tinsel).

And then, this weekend, they brought Christmas to us. Luau dressed up as Santa, Katie was an elf, Brooke was a reindeer (and Jess came as Jess.)

Oh, if you could have seen the look on Hope’s face when Santa came through the door, bearing gifts galore!

She was literally frozen for a moment — wonder, surprise, excitement, dreams comes true. It was the kind of moment that a mother treasures forever. (Most of these moments have come for me in seeing others love my girls, and nothing touches my heart more).

During the visit, Hope asked to see Santa’s Nice List. (Up until this point she had been very concerned that she might be on Santa’s naughty list… due to transgressions committed earlier in the week). Santa had come with just about every prop in the book, but he didn’t bring his list. Jess quickly came up with the excuse: “Oh, Santa left his list at the North Pole.”

While Brooke dazzled me with her drawings of Boots, Benny, Tico and Isa and all the cast members of Godspell, Katie worked on her own little project. Some time later Katie produced a piece of paper with lots of names written on it; across the top it said: Nice List. And Hope, of course, was the very first name on the list. And Santa, of course, showed Hope that she was indeed on the Nice List.

Katie cares about the details. The entire time her focus was on making this a special time for Rhema and Hope. She is 8 ¾ years old, and there’s no doubt this girl is already having a profound impact on this world. Katie and Brooke both were so amazing and sweet. I seriously think Jess and Luau should write books and teach seminars on parenting. These two little girls are the best of the best.

When it was time to go, I stood Rhema to her feet and told her to give a high five to Santa. She had not acknowledged Santa or shown any interest in him. But when I stood her up, instead of giving him a high five, she clambered up his legs, climbed over his big belly and right into his arms. It was PRICELESS… and perfect.

And she didn’t want to let go – I had to pry her out of his arms! Rhema doesn’t give her hugs to many people. But I’m convinced that she recognizes love. And it made me wonder (again) if she actually understands more than I give her credit for… like maybe she does get the idea of Santa. Truly it seemed that in that room with Jess and her family, just about anything was possible.

Jess came with the gifts and well-wishes of many dear bloggy mamas. For the past few months I have been receiving ‘encouragement packages’ from friends – some of whom I have never met. Seriously, the timing is always impeccable – a package arrives just when I’m having a particularly rough day. (Thank you, Michelle, for the way you inspire kindness).

Try as I might I can’t be eloquent about this. The love and support we have received has been like nothing I have ever seen or could have imagined. It’s like God really did open the windows of heaven and is heaping blessings upon my family. The only thing I can liken it to is the gift of grace through Christ – so lavishly given, so very undeserved.

I can only say thank you, and hope you know that that does not come close to conveying our gratitude. Thank you for the thoughtful gifts. Thank you for your generosity. Thank you for the prayers. Thank you for the cards and letters to Brandon. Thank you for being here, and thank you for sharing in our lives.

Still thankful.

She does

This was the best Thanksgiving ever.

It wasn’t the fact that my parents and my twin and bro-in-law and niece came and blessed our home with warmth and laughter…

Or the fact that my turkey and mashed potatoes and not-yo-momma’s-banana pudding totally ROCKED…

Or that the husband is home this year…

Or that Rhema screamed and ran round and round the dinner table while we ate – in nothing but her unmentionables – and nobody batted an eyelash, and this is family I have…

Or that I could burst with gratitude for a God who has healed my heart, saved me, shown me mercy upon mercy and grace upon grace time after time…

Or that Hope sang and played two little songs on the piano for us…

All these good gifts were more than enough to fill my cup to overflowing,

but the best was this:

Rhema prancing on the basement stairs, me standing in the doorway.

“Rhema. I love you. I love you.”

She doesn’t look at me, she seems completely unaffected as she plays on the stairs.

She understands so much more now. I always wonder, does she understand this? What I mean when I say ‘I love you.’? Does she feel loved when I say the words?

“Rhema. Do you love… me? Do you love me?” Why do I sound vulnerable? How silly.

She looks up suddenly, fixes her gaze just past me, and spontaneously speaks,

“Yeah, yeah, yeah.”

Her words go into my heart and I have to sit down. I think it can’t be real. When she says a word it’s never just once. It’s always repeated two or three times. She says “yeah, yeah, yeah” a fair amount these days, but it’s not always the appropriate response, sometimes she doesn’t seem to understand the question and “yeah, yeah, yeah” is just her go-to phrase.

I know you love me in your own sweet way, but are you really trying to tell me right now?

“Rhema. You love me. You do? You do?”

This child God gave me who brings me to my knees and then inspires me to stand every day, (all in the same day or hour or minute), my girl, my darling half-dressed daughter with popsicle juice in her wild hair. She climbs into my lap, gives me a buck-toothed smile, says,

“Do, do, do.”

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If you have an inkling of what this means to me, multiply that by a thousand and you might be getting close. I think I win, friends. I am the happiest, proudest, most thankful mother on the planet tonight.

Es-ca-pades

“So don’t hold back, just have a good time
We’ll make the rules up as we go along
And break them all if we’re not havin fun
Come on baby let’s get away”

~Janet Jackson, Escapade
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Lately we’ve been daring to live.

To get out.

Autism once held us back. The inability to wait, the tendency to bolt, the overstimulation, the tantrums and unpredictable behavior. All of these factors have, in the past, caused us to opt out, stay home, close the door to what we could be.

My friend Carrie often encouraged me that getting out and helping Rhema learn to navigate the world through experience was just as important as the extra speech therapy sessions. Sure there will be some meltdowns, she’d day. Some improvising, some fast getaways and outings cut short, some heart wrenching and frustrating moments… that’s ok. There will be some funny and thrilling moments, too, and memories made that make it all worth it.

Honestly, there was a time when we dreaded the weekends – there was no set schedule or direction and autism shocked us every Saturday and Sunday, and everything inside our walls fell apart.

Emily Colson in Dancing with Max faced similar circumstances and felt like a hostage in her own home because of her son’s challenges. But one day she decided to believe that it was her last day alive. She asked herself how she would spend her last day. She imagined all of the things she longed to do and really experience with her boy – going to the beach, walking in the city, running in the water. She wouldn’t care what anyone thought if things didn’t go well. So she got up out of her pity party and she and her son lived life.

Perhaps for us it was Brandon’s absence over the past two years. Maybe it taught us something about cherishing family and “redeeming the time.” Now we actually look forward to venturing out, doing things together, Rhema right there with us.

So this year we had our first successful outing to a restaurant.

We took a 2-day trip to Storyland.

We took a train ride with grandparents and cousins.

We went to the New England Aquarium.

It may sound simple, but these are huge, HUGE accomplishments. And they have not been without incident, mind you! But these are things that a short time ago I could not have imagined doing, never even considered a possibility.

This weekend we decided to try another first: pumpkin picking. It wasn’t until we had parked the car and I saw the crowds and the wide open spaces that I looked at B, panicked. “Um. How are we going to do this???” And the Hooah-Hooah-airborne-battle-tested-West Point trained-Chinook-pilot-soldier-boy just shrugged at me like I have no earthly i-dear.

And I thought, God you’re good because you make every day of my life an adventure with these people you gave me and called family.

But the pumpkin patch we did. And a hayride. And apple cider and donuts. And non-dairy cotton-candy slush. Oh, it tasted sweet, y’all…

With arms raised high, we did it! In our own crazy, hard, beautiful, offbeat, wonder-filled way.

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Note: Rhema’s school has done a great job of getting her out in the community and giving her the tools to succeed in public. Her amazing teachers have helped make days like this so very possible for us!

Inappropriate hugging

Autism, our autism at least, is about extremes.

For years Rhema was tactile defensive. Touch averse. Any time we tried to hug her she would squirm and run away like we’d just eaten garlic pizza and onion rings.

But these days we are experiencing such deep, emotional connections with her – it’s amazing! One of her teachers wrote me: ‘She’s letting us all in and it feels really great’. Now she loves to give and receive hugs!!!

OK, maybe too much.

Especially when it’s the “climb up your back and swing by your neck around to the front and lock legs and maybe take out an eyeball and grab a fistful of your hair as you fall over from the weight of me” hug.

At school we’ve discussed that this behavior is something we may need to address. Because you can’t just go hugging anybody (which is kind of sad). And when she won’t stay in her seat and finish her work because she wants to bear hug a teacher walking by, well, it’s endearing but sort of a problem.

I blame Hope. She has always demanded hugs from Rhema; she was never daunted by the refusals, only inspired to hug more. In fact if anyone can be said to exhibit inappropriate hugging it would be Hope, the neurotypical one! Her modus operandi is to hug you to death.

Hope getting a taste of her own medicine

Last month we planned a “playdate” with Jess and her family. Our friend Drama was visiting, and Rhema, Hope and I would be meeting Drama’s beautiful daughters, Miss M and Roxie, for the first time. Miss M is remarkably generous, talented, courageous, and wise beyond her 12 years. She happens to be on the autism spectrum, and over the past couple years she has felt especially close to Rhema – she has prayed for her, read about her on the blog and even helped her mother send us a care package, picking out a musical toy that she knew would soothe Rhema. (To this day, Rhema loves that toy.)

On our drive over to Jess’ house I explained to Hope who we would be meeting and reminded her of the wonderful gifts they’d sent the year before. I had no idea if Rhema was understanding or even listening to our conversation.

It was raining when we arrived and my dear friends were crowded at the door – Jess and Drama, Katie, Brooke, Miss M, Roxie – and everyone was talking excitedly.

Rhema saw no one but Miss M. She walked past the others, reached up and tenderly wrapped her arms around Miss M’s neck. Somehow she knew. She just knew.

And they hugged. No words. Just an embrace of sweet recognition like I’ve found my sister.

It was a moment. I looked at Jess in the doorway, our eyes huge, like Whoa.

Weeks later and we still can’t get over it. We call it The Hug.

And everything about that hug was beautifully, gloriously appropriate.

These days I am blessed to see a lot of firsts. Without a doubt, The Hug was the first time I’d ever seen Rhema connect in such a way with another child (besides Hope, and even that is rare).

It gives me such joy and hope, you see.

Because until now

I didn’t know my girl could have, would ever have, friends.

The Joyful Sound

“Blessed is the people that know the joyful sound…” ~Psalm 85:15

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I have such a soft spot for the voices of children with autism. Some have only just begun to talk; some never seemed to have trouble speaking at all. Some script, some have poor articulation, some are monotone and echolalic.

But to hear their voices, it just gets me. They charm me with their glorious sounds, and honestly, there are times I could dance. I know, I know what a miracle it is.

A few of the sweetest sounds I’ve ever heard:

Joy. I dare you to hear her and not smile; no words necessary, her joy is catching:
http://elvis-sightings.blogspot.com/2010/09/yawns-are-funny.html

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Brooke. I’ve listened to a bajillion renditions of Amazing Grace in my time, never one as beautiful as this:
http://adiaryofamom.wordpress.com/2009/08/18/amazing-grace/

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BoyWonder. He lives up to his name and this is the sound that reminds me anything is possible:
http://theadventuresofboywonder.blogspot.com/2010_11_01_archive.html

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Reid. Reid wrote and sang this song at his baptism years ago. It’s a powerful, beautiful statement of faith that still brings on the tears and goosebumps. (Scroll down to the 2nd youtube clip),
http://autismunplugged.blogspot.com/2009/03/praying-with-lior.html

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And always on the list is the sound of Rhema speaking words of her Bible verse, the one I have said to her every night since she was a baby. It’s been a long time since we’ve heard those words, but we believe they’re there in her heart, and we will hear them again.

Today we were blessed with another sound, a new song. We were all sitting in the living room having what we call “family devotion time.” Brandon prayed, Rhema began to hum softly. Anyone who reads this blog knows that Rhema hums constantly. This time was vastly different because for the first time in almost eight years we recognized a tune. Twinkle, Twinkle Little Star!!!

B stopped praying, no one moved and we held our breath as Rhema’s soft song filled the air. She seemed to notice that we’d all gone silent and she stopped humming. B’s voice was thick with emotion as he said,

“We hear you, Rhema.”

And then, just for us, she hummed the song again.
Just a little nursery rhyme, but there are no words to describe the beauty of it. We are amazed as she shares with us little by little all that’s inside her, all that she knows and understands. Thank you, Lord, for ears to hear Rhema’s song.

For the rest of the day we hummed and sang the tune, begging her to do it again. While I bathed her, I was able to catch a bit of it on my cell phone. It doesn’t do it justice, but it’s a taste (yeah, pump up the volume). Can you hear the joyful sound?

Growth happens

Wow.

We still have many situations when Rhema cannot express what she wants and needs, or tell us what hurts… when her lack of language is heartbreaking and frustrating for her and us.

But slowly a page has turned, and we’ve entered a new phase of discovery. On previous pages was a child hyperactive and isolated. Seared in my memory is the time a group of clowns came into a small hospital waiting room and called her name, blew bubbles, tossed toilet paper, while my girl ran in circles and never seemed to hear or notice them. But now, here is a girl who demonstrates appropriate affection, is teachable, has relationships with her family and teachers, understands words and directions and tries her best to follow them. Of late, this same child is discerning, so very present and participative, so with us.

She’s always enjoyed the ocean breeze on a late summer day. But now when she grins and squeals, she shares it – for just a moment she looks our way and we get to see her eyes dance. Her growth, in spite of all the challenges, is changing our family heartbeat, bringing unexpected joy.

Two quick stories.

Yesterday morning I got to sleep in. You know. Until 6:30 am. Rhema burst into my room, making her happy sounds, moving all around. I figured she was probably hungry, ready for the day to begin. But I didn’t move. I wanted to see if she would acknowledge my presence, approach me. She wandered the room in ceaseless “song”, flapping an old cheese wrapper in her hand. She chewed her shirt. She found a water bottle and guzzled it. She went into the bathroom and flushed the toilet. She jumped up and down on the bed.

But I waited, pretending to be asleep.

After a while her humming stopped, and I sensed her beside me. I could feel her breath while I held mine. I was in a precarious position and wondered what she would do – jump on me? stick her fingers up my nose? push me out of bed? But anything she did – even if I lost an eyeball – was better than nothing at allthe nothing that used to be.

And then… then… ever so lightly, like an anointing, she laid a wooden puzzle piece on my forehead.

Then she bounced out of the room, humming as she went.

Hooray!

She acknowledged me in her own special way. She gave me a piece of her; treasured puzzle.

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We have locks on the refrigerator and freezer doors. I like to think the locks may prompt her some day to come and ask for what she wants. But really the locks are to keep her from engorging on cheese and popsicles. I grabbed something out of the freezer for dinner and forgot to lock the door. I ran upstairs to throw in a load of laundry.

When I came back I found Rhema chowing down on an Italian ice cup. When she saw me she dropped her spatula. She slinked out of her chair and put the half-eaten Italian ice back into the freezer.

Can I tell you how unbelievable this was?? The fact that she understood that she shouldn’t be in the freezer, should not be eating sweets before dinner (?). The fact that she bothered to get a utensil – albeit a big plastic spatula- and used it! The fact that her face registered something like guilt. (Until recently, she’s had the moral compass of Swiper the Fox, always grabbing, snatching other children’s food, toys, etc.) The fact that she understood she did something wrong and tried to, oh so typically, remedy the situation.

I laughed until I cried.

Goodness. This girl of mine, she’s keeps growing up.

It’s beautiful and hope-filling and amazing and just about the scariest thing I can think of. But watching her and experiencing her now, this blossoming, I feel strangely braver than ever before.

And I like her. I really like her.

Autism, epilepsy and song

Your love is a symphony
All around me, running through me
Your love is a melody
Underneath me, running to me

~Switchfoot, Your Love Is a Song

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My friend JoyMama has a darling daughter Joy who is Rhema’s “sister across the way.” Both our girls are window-dancers and are usually up to the same antics. They are the same age, and both have autism and epilepsy issues. Months ago JoyMama sent me a piece about the comorbidity of autism and epilepsy. According to the article, roughly one third of individuals with autism also have seizures.

JoyMama pulled the following quote:

“During development, the brain is trying to set up all these connections,” notes Ann Berg, research professor of biology at Northern Illinois University. “You’ve got these little neurons trying to sing to each other and then this crashing cacophony comes down over them.”

Then JoyMama wrote something that made my eyes smart and gave me goosebumps:

“Blessings on our beautiful girls and their hard-won songs…”

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I’ve written about it many times here. Rhema. Her language, her life is a song. Hope calls it “talking with music.” We don’t know or understand the words, but her serenade is ever present. Like a long musical, she intones her heart-thoughts; she sings every emotion. It seems to be a melody for her, for us, for the morning and night, for toilet paper and rain and air and macaroni and blades of grass; she hums to the world.

And when I think about it, it kills me and inspires me that she keeps singing.

To date, Rhema’s epileptic condition has proven untreatable. She must endure several EEGs a year, and for a child with autism and the communication paralysis and anxiety and all the sensory sensitivities that tag along, the EEG hookup can be sheer agony. So it was yesterday, and I’m convinced she fought harder than she ever has.

Can I say? I wish we didn’t have to keep doing this.

For 24 hours a device in her backpack will record every spike and wave, every electrical blast in her brain. Just a few months ago the EEG revealed that the “crashing cacophany” occurs on average 58 times a minute for my girl.

She repeatedly takes my hand and puts it on her head. It’s her way of pleading with me to take those awful leads off her head.

“I’m so sorry, sweet girl. We have to keep it on.”


This is the face of autism and epilepsy.

And this is the face of a brave little soprano opening her mouth,

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and singing through the storm her hard-won song.

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The help

I blame it on the Miralax.

We had a long drive, and on the way, my girl soiled her pants.

At home she speed-waddled to the bathroom and whipped off her clothes before I could stop her.

It wasn’t her fault really, but somehow the floor, the sink, the toilet and the humans were covered in the brown stuff in a matter of seconds.

I washed her hands and tried to do damage control.

There were not enough wipes in the world.

She stood off to the side and hummed excitedly.

I ran and grabbed cleaner and a roll of paper towels.

Rhema casually came over and ripped off a couple paper towels. Then she bent down, awkwardly wiped at the toilet seat and threw the paper towels in.

Had it not been dirty, I would have hit the floor.

She helped! She cleaned!

The is the tornado-child whom I have run behind with a broom, sponge and bucket since she took her first steps. This is the child who, for years, has smeared expressed her fingerpainting creativity with the…er…chocolate pudding on every possible surface (so much so that we had to strip all the wallpaper in her old room and re-paint the walls with a highly washable paint). This same child used those same hands to help me C L E A N!

I never thought I’d see the day.

Sniff. My baby’s growing up.

I dare say, cue the Pomp and Circumstance.

She’s graduating from Poop Art School. (!)