How she understands

“Love allows understanding to dawn, and understanding is precious…”
~John O’Donohue

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Brandon is home for the holiday. It’s a quick visit – he’s been away on a military assignment for months and has two months left to go.

He did the planes, trains and automobiles to get home. The girls and I were to pick him up at the train station.

But Rhema was in meltdown mode. She had been tantrumming in the kitchen for nearly an hour. And now I was asking her to do something outside the normal routine. I just knew I was going to have a hard time getting her shoes and pants on and getting her to the car.

 If only I could communicate with her! If only she could understand. I could explain that we’re just going for a ride – she won’t even have to get out of the car.

“Rhema, we’re going bye-bye!”

I reached out to her and she resisted. She grew more upset and moved up the stairs to her room.

This was not going to be pretty.

“Rhema, come on. Let’s go!”

“Rhema, we’re going to go get Daddy!”

What happened next was nothing short of amazing. Her expression changed, she stopped resisting.

She was listening.

I said it again, slowly,

“We’re going to get Daddy, Rhema. We’re going to get Daddy.”

Instantly she stood up and went down the stairs and headed to the garage.

I just stood there for a moment with my mouth open, letting the realization sink in. She understands!!!

Before I could even get her pants and shoes on, she ran out the door, jumped in the car and buckled herself in.

I drove to the train station amazed and overjoyed.

(This is big, y’all, this is bigger than big!)

All of the terms that have been applied to her over the years – auditory processing disorder, “word deafness”, Landau Kleffner syndrome , ‘very little receptive language’ –  she ‘d just turned on their heads.

We’ve been getting a sense for some time that she’s understanding language more and more, but it was never so clear, so meaningful as in that moment.

The words I’d said to her were heard and understood! And now they had to come true. It was suddenly so important for to see Brandon get off that train.

Thank the Lord, he did. He went to Rhema right away, and they shared such a sweet reunion.

As they held on to each other, my heart filled. Truly, it felt like waking up. 

And I probably sounded silly but I couldn’t stop saying,

“I told you, baby. See? We got Daddy. I told you. I told you.”

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So Be It

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” John 9:1-3

When Rhema was 2.5 years old, she was diagnosed with a rare epilepsy. (An official autism diagnosis had come a few months earlier).

After the shock wore off, I actually felt a little excited. It seemed that we had found the true culprit in the LKS. This was the reason she wasn’t speaking. Her doctor believed that if we could control the epilepsy with drugs, she would acquire language. (What he failed to mention is that LKS is notoriously hard to treat). He even suggested that she did not have autism – that the aphasia and all the behaviors we were seeing were in fact the result of the seizure disorder.

I dared to believe him. I let myself believe that she just might be cured by a magic anti-seizure pill.

We called family and friends to share the good-bad news. I sent out a prayer alert to people I hadn’t spoken to in years. I was so hopeful. I had dreams of conversations she, my oldest girl, and I would share. It was hard to imagine, but I envisioned her present, with me, those gorgeous eyes gazing into mine. I imagined the clever things she’d say. I imagined learning all about her, her personality, her likes and dislikes.

Weeks later, Brandon and I were watching the news on TV. A story came on about an autism school in Massachusetts. Oddly enough, the three students profiled in the story all had seizure disorders. As I watched the children intently, I realized then that my Rhema would fall into the “severely impacted” and “low-functioning” category. I suddenly realized that we would struggle for a long time.

I choked out, “This seizure diagnosis doesn’t mean that she doesn’t have autism. It just means that she has really bad autism.”

I wept.

That moment, that realization was far more painful for me than when I first heard the words, “Your daughter has autism.”

I rarely cry openly, and so when I do, it tends to alarm my dear husband. I’m not even sure he understood my blubbering through my tears. But I remember him saying, “Let’s pray.” And I remember us sitting together on our old futon beseeching the God of heaven to heal our precious girl. We did not ask for comfort or strength; we just desperately needed her to get better.

 

That was three years ago.

Knowing what I know now… if I could go back to heartbroken me on the futon that night, I would say-

~You’re right, you will struggle for a long time. But this struggle will force you to the One who is sovereign.

~You’re right, you will see miracles.

~But not always like you think. Instead, they will be more significant, more amazing than you could ever imagine.

~Your days as her mother will be the greatest and hardest days of your life.

~Don’t be afraid to follow your instincts, your gut, no matter what doctors or teachers say.

~You will learn to trust and enjoy God, even when your prayers go unanswered… when your circumstances don’t change. That, my dear, is the beautiful faith.

~You will be “low-functioning” at times; and it will crush you over and over again, but will keep you humble.

~You will be “severely impacted” by autism and by a God who teaches you to listen with your heart.

~Her life will be like a song, a sweet devotion…

~Words will come, words will go. But the Word of the Lord stands forever.

 

Crisis Intervention

“[This is the story] of a woman’s devotion to the child who is both her burden and God’s singular way of smiling on her…” Jewel, Bret Lott

I recall reading in Susan Senator’s book Making Peace with Autism about going through periods of crisis with your child, and how some crises can be so difficult that there’s nothing to do but hold on for dear life and wait for the storm to pass. I feel like we’ve been in a crisis like that.

My girl has gone through a dreaded regression and has been exhibiting behaviors even extreme for her. She seems to have lost all toilet-training. She’s up all night doing her up-all-night antics of yelling, crashing, banging, humming, breaking down her bed. She’s been very hyperactive, a tornado, out of control. She’s picked up a new hobby of eating things that, well, you just don’t eat. She’s stripping. She’s been harder to engage than ever, prompting her beloved therapist T to say “this is the worst she’s ever been.”

I’ve been in a haze just trying to hold on to patience and keep up with all the messes and bathroom accidents all over the house. (No use putting on a diaper, she rips them to shreds). When I complained to my friend Carrie that I’d been destined to a life of poo-cleaning, she reminded me of Jesus washing the smelly, dusty, cracked feet of his disciples – how He humbled himself to clean their filth. It may sound funny, but it’s given a little purpose to my days. To think that I’m serving Rhema in love, but more importantly that I’m serving Him as I care for her. Let my lifesong (everything I do) – even this – sing to you, Lord.

I’ve always been confident in my ability to figure out what’s going on with her. When her sub-clinical seizures returned last spring, I knew. This time around I was unsure. Her doctor (and others) suggested that the sudden increase in behaviors was due to Brandon’s absence. While I agreed that that was certainly part of it, I just couldn’t believe that was all to the story. I was concerned that the seizures had returned or her medication was making her crazy.

Finally, yesterday her doctor agreed that something must be done. We increased her anti-seizure med – this will either calm her somewhat or make her more hyperactive. Her doctor is also scheduling her for another overnight EEG in the hospital.

Last night after the medication change, we finally all slept. In fact, we overslept. And it felt GREAT! (Amazing what a good night of sleep can do.)

It remains to be seen whether the crisis is over, but I’ve got my second wind. I know we’ll make it.

A Good Bad Result

I’ve tried in vain to organize my thoughts over Rhema’s test results from her hospital stay earlier this week.

The good news is that her EEG came back clean.

The not-so-good news is that the only medication that seems to stop Rhema’s seizure-like activity is high-dose diazepam/valium. There is a risk that Rhema will become addicted to this drug with long term use.

A little less than a year ago, a very high-dose diazepam protocol was given to Rhema in order to “rescue” her from a pattern a continuous mini-seizures. The results were astounding – she went from a spike index of 85-100% to less than 2%. We were thrilled!

Rhema during an EEG last September

Because of its addictive properties, our neurologist did not want her to stay on the med long-term. We immediately began weaning her over several months. The hope was that the first bolus had shocked her brain out of the seizure pattern and that another anti-seizure med, Lamictal, (non-addicting) would maintain the seizure-free state.

An EEG in June confirmed our fears that the seizure activity had indeed returned with a vengeance. She was put back on the diazepam, and now, several weeks later, her EEG is clean again.

Over the past 3 years, we have tried many anti-epileptic meds to no effect. Her options:
1) Diazepam long term
2) Intensive steroid therapy – her dr. is very much against this
3) A brain surgery called MST – definitely a last resort

Our “choice” for now is clear: uncontrolled seizures or unknown reactions to the drug in the future. But the last thing we need is a child with symptoms of drug dependence, and my biggest fear is putting a 5-year old with autism through some horrible drug withdrawal down the road. (Not to mention, the diazepam makes her very h-y-p-e-r-a-c-t-i-v-e  – as if we needed more of that. Ugh!)

How long term is long term? Nine months? A year? We don’t know.

But for now, her brain is quiet and she has a chance to really learn and perhaps even gain language. And for that I am grateful.

But no matter how I spin this, I just can’t seem to get settled on it. Maybe I’m numb. Truly, I don’t know what to think, how to feel. There is fear, worry, and hope… always hope. There is information overload from googling Landau Kleffner syndrome and diazepam dependence all night long. There is the constant wondering if we’re doing the right thing for her.

An autism mom who reached out to me years ago recently told me something so simple yet so profound that I’m clinging to it now. She said, “I will pray the Lord will give you peace today as you learn to lay tomorrow at His feet.”

So here we go.

Nothing

Rhema was *great* during her EEG. It was unbelievably smooth, and I know that someone must have thought of us and prayed for us! I will write about her results soon.

Rhema’s doctor is one of the top pediatric neurologists in Boston. On Monday, before he arrived, a team of medical students and residents came to speak with us. First, they asked lots of questions of Brandon and me, getting Rhema’s history from our perspective. (Rhema’s seizure disorder – Landau Kleffner syndrome – is rare. You just don’t see a case like hers everyday.)

Then the resident examined Rhema while she sat in bed. These examinations are never easy – even something as simple as getting a temp or blood pressure on her is difficult because she gets scared. She wriggles, squirms and fights. The resident did manage the standard checks – he looked in her eyes with a flashlight, tested her reflexes. Some tests were unsuccessful because they required following directions and understanding the directions to begin with, such as ‘raise your arms,’ and ‘deep breath in and out.’

The resident stooped down to look her in the eyes (she was sitting on the bed). He raised two fingers and asked, “How many fingers am I holding up?”

There was silence as Rhema looked all around, anywhere but the doctor’s face.

“How many fingers am I holding up?”

He attempted to get her to look, waving his fingers in front of her, “How many fingers am I holding up?”

No response.

Switching gears, he asked, “What’s your name?”

Silence. Crickets chirped.

“What’s your name?? What’s your name?”

I could feel the heat in my face. I was starting to get angry, angry at him, angry at the whole situation. Hadn’t this guy read her file? Didn’t he know her medical history? Surely the word NONVERBAL was written somewhere in magic marker on her records, across her forehead? Wasn’t it painfully obvious by now?

The doctor spontaneously ripped off his watch and dangled it in front of her. “What’s this? Rhema. What’s this?”

Finally, I interjected. Surprisingly, my voice was soft:

“She’s not going to answer you.”

He slowly turned to us, “What does she answer?”

I know he wanted to know for education’s sake, for the benefit of the other medical professionals in the room.

Brandon and I looked at each other. A flicker of deep longing and… loss… passed between us. Something I believe no one can understand unless, they, like us, would move heaven and earth, spend their last penny, and chop off their limbs…
just to have one real, meaningful conversation with their child.

It is what we miss most of all.

What does she answer?

His pen was ready to take notes on a blank page.

“No… nothing.” I stuttered, as if realizing it for the first time.

He waited. He seemed to want us to scroll our memories, to come up with something. But we didn’t have to try to remember. Surely we would remember. But there was,

“Nothing.”

Later, after everyone had left and it was just Rhema and me, I nearly jumped off the sleeper chair when I remembered something.

Rhema is nothing!

Seriously. Rhema is nothing!!!

I have been studying her name’s meaning for a long time. Many who read this blog know that her name is translated from the Greek as “the spoken word” (as opposed to logos, which is “the written word”).

But there’s another, lesser known meaning for rhema, and that is “no word” or “no thing.” Specifically, in Luke 1:37, when the angel is telling Mary that she will birth the Son of God, he says,

“For with God nothing shall be impossible.”

‘Nothing’ in the original translation is ‘rhema.’

She is the embodiment of that verse. I look at her, and I already see God doing the impossible. There are a LOT of discouraging times, but I tell you, there’s no doubt in my mind God will continue doing the impossible in her.

In that hospital room, and even now, I am prompted to open my fists and give all of my nothing to Him… “to the God who gives life to the dead and creates something out of nothing.” (Rom. 4:17) 

I give my rhema to the One, who with a Word, framed the worlds from nothingness and sustains it even now. (Heb. 1)

 

Write our story, Lord, in your words. Take our nothing, and fill our blank pages with all of the impossibles You have made possible.

 

*My friend Lianna sent a link to a beautiful post about nothingness. Click here.

And I Am Helped

We met with the neuro this week to devise a new game plan for Rhema’s seizures. We knew every possible option would be discussed: Diazepam/Valium. Steroids. A brain surgery called multiple subpial transection (MST). In my mind, none of the options were good. And I cannot begin to explain the emotional turmoil I felt over even entertaining the MST surgery as a possibility.

The Lord is my strength and my shield; my heart trusts in him, and I am helped. Psalm 28:7

 

It realized how often she is having absence seizures. Because she has autism, people may assume that she’s just in her own world. Absence seizures in a “typical” child are much more obvious. In Rhema’s case, I wonder how many times we’ve chalked it up to ‘the autism’ when really it was ‘the epilepsy.’

… my heart trusts in him, and I am helped.

 

But we came out of the meeting feeling good. We are stopping the current med (because it’s so not working). She is now on a relatively high dose of diazepam. She will go into the hospital in a few weeks for long term monitoring. If the diazepam works, she will remain on it for the next 6 months to a year. If the seizures return, then we will re-visit the MST surgery as an option.

We have been blessed with the best doctors, the best therapists, the best teachers…

…my heart trusts in him, and I am helped.

 

She’s been on the new med for 3 days. The diazepam makes her loopy. Her eyes are unfocused, half-opened. She’s unsteady on her feet. She looks so … drugged. It’s hard to watch.

…my heart trusts in him, and I am helped.

 

A precious friend of mine often takes care of Rhema during church, just so that Brandon and I can attend the service. Last Sunday she held Rhema in her lap and prayed with all her heart for healing, for peace, for joy, that Rhema would know her God.

Tears. Is there any greater gift?

In fact, people pray for us whom we’ve never even met. 

…my heart trusts in him, and I am helped.

 

When prompted, Rhema says hi and bye quite regularly now. Hope cheers. And it floors me every time. Because even in my dreams, try as I might, I could not imagine her looking someone in the eye and saying “hi.”

And then there’s Romans 10:8,9. Her name verse. I believe she has the entire thing in her head. When I recite it to her, she nows says “heart” and “saved.” Good words, yes? What a miracle.

Her EEG reports detail how continuous spikes, sharp waves, and focal slowing dominate the areas of her brain that control speech and comprehension. I have pictures of her brain on my desk explaining to me in complicated medical jargon why she cannot understand language.

Based on the reports, it does not seem possible that she could produce speech.

 

And yet, she speaks.

 

Just a word here. Just a word there.

 

But. she. speaks.

 

Awesome God …my heart trusts in him, and I am helped.

If I Could Make You Understand

… then maybe it would make sense to me.

 

If I could make you understand

that I know how frightening it is for you to get an EEG. Strange people handle your head and mark up your scalp. The smell of the glue, the sound of the unseen vacuum tube as each lead is dried, and the discomfort of some 30 electrodes is enough to scare anyone.

 

If I could make you understand

the reason I’m not with you when they glue on the electrodes is because I don’t want to see you so afraid. I send Daddy to go with you because I don’t want to watch you fight it with everything in you. I don’t want to be there when they have to bind your arms and legs in order to get the leads on your head.

 

If I could make you understand

that it looks like there are many, many more EEGs in your future, my darling.

That the latest results show that the seizure activity in your brain has indeed returned. Less than a year ago, we were able to quiet the electrical storm. And I thought, I hoped, that was the end of it. But now it has come back with a vengeance, and I realize the fight is far from over.

 

If I could make you understand

that I never wanted you to have to go on so many different medications. I said at the outset: “My daughter will not go from drug to drug.” I’m sorry that, in fact, you have been on 4 different anti-epileptic drugs in the past couple years. And while these may have prevented some of the outward, visible seizures, they have done nothing to calm the non-stop “spike events” in your brain.

 

If I could make you understand

that your father and I have to make some very difficult decisions next week about how to treat your LKS. That we pray for the Lord’s wisdom and guidance everyday. That we trust He has “plans to prosper you and not to harm you, plans to give you hope and a future (Jer. 29:11).”

 

If I could make you understand

that we need to know that we did everything we could to help you.

 

If I could make you understand

that I am so very proud of you. In spite of all this, you are still our gentle little girl with the soft smile. And you have managed to learn so much in the past few months, in spite of the constant short-circuiting in your head. You amaze me.

 

If I could make you understand

 

But I just can’t…

 

find the words.

 

So I’ll just say I love you…

 

and trust you understand.

I Will Rest You

I will lie down and sleep in peace,
     for you alone, O LORD,
     make me dwell in safety.  Psalms 4:8

Rhema during an ambulatory EEG

 

Rhema’s brain and sleep have always been in an argument.

When she was a baby, I was baffled by the fact that she did not sleep. I thought that babies slept, and mine simply did not. She was colicky and seemed uncomfortable in her own skin. Just as she would start to fall asleep, she would flail and shake. Even when swaddled, she would shake. Sometimes, she would briefly turn purple.

I was a clueless, new mother. I read books for advice. I tried home remedies and supplements. Nothing seemed to work, and my baby would scream at me all night long. When I called the nurse, she always brushed it off as colic and suggested I try the things I had already tried. Brandon was in Iraq at the time and there were so many long, sleepless nights, that I seriously feared I might lose my mind, or even worse, hurt my baby. (I suspect I had postpartum depression and did not even realize it.)

There was a television channel called PAX that featured a program from 1 a.m. to 5 a.m.  It was simply Scripture verses set to instrumental music and nature scenes. I could not hear the music over the crying, but I could read the words. The program was my lifeline during those long nights. (Some time later I wrote the program creators a letter and sent a donation – I basically told them they saved my life.)

 

Fast forward a couple years later and we are sitting in the neurologist’s office at Children’s Hospital. He tells us that Rhema’s EEG results indicate that she is experiencing continuous epileptic activity during sleep. The doctor is excited in a wierd sort of way. He shows us graphs and highlighted images of her brain: In drowsiness, the electrical discharges increase in “rhythmicity and frequency.” In the transition from sleeping to waking, there is even more epileptic activity… on both sides of the brain. One report states that they were unable to get a normal reading for more than 2 seconds. ‘This is a very abnormal study’, it reads … ‘Landau-Kleffner syndrome.’

I’ll never forget that day, sitting next to Brandon, with baby Hope in my arms and Rhema, in her own world, pinging off the walls. It was a day where everything finally made sense and absolutely nothing made sense. And I felt tired, achingly tired.

 

Fast forward to today. Rhema has been unable to sleep, really sleep, for the past month and a half.  She is up all hours of the night, screaming in frustration, crying, laughing hysterically, humming, babbling, crashing, banging, pounding her feet against the headboard. For safety reasons, we’ve had to remove everything from her room except the bed and a few books (in which she has torn the pages) – the dresser, toybox, even the light bulbs are gone. She goes through phases like this, and she amazes me with her ability to function during the day and even do well in school and therapy on little to no sleep.

But this latest run has been particularly brutal. As I lay in bed, listening to Rhema’s antics, it’s heartbreaking for me to wonder about the electrical storm raging in her brain. Lately, it’s taking a toll and we’re seeing an increase in meltdowns, aggression and even self-injurious behavior.

 

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” Matt. 11:28-29

 

I’m for real here. I’m not trying to be Happy Christian or toss out pat Bible verses. Our load is heavy, the road stretches out looooonnnngggg before us, and we get weary. I’m angry in the morning at the huge circles under my eyes. 

But there is a rest for the soul. And I’ve found it only in God. It is a grace-given, saving rest that does not depend on external circumstances. For me it is rooted in the fact that I know the Lord is faithful and true. Time and again, He has blessed us with provision, guidance and miracles, big and small.  In the words of a favorite song, “I can’t remember a trial or a pain He did not recycle to bring me gain. I can’t remember one single regret in serving God only and trusting His hand.” A rested soul can refresh a weary body. His promise, when we come to Him, is literally, I will rest you.

 

So tomorrow, it’s back to Children’s for a 24-hour EEG. Although we will have to wait for some of the results, I suspect an increase in her current anti-seizure meds is on the horizon.

 

Meanwhile, I’m learning to rest.

 

Return unto thy rest, O my soul; for the LORD hath dealt bountifully with thee. Psalms 116:7

 

Note: Many individuals with ASD have sleeping problems. Sleep issues rarely indicate a seizure disorder like Landau Kleffner syndrome. An EEG will rule this out. 

What’s Going On In That Head?

Another overnight EEG this week…

Some 30 plus electrodes glued to the scalp

in an attempt to determine

what’s going on in her little head.

 

Her Creator already knows…!

 

“Indeed, the very hairs of your head are all numbered…” Luke 12:7

Unfolding Miracles

Dear Dr. BEAM,

Last week we received the news that our daughter’s latest EEG came back normal. The epileptic activity that she experiences during sleep has been completely “cleaned up.”

I wanted to say thank you.

When we met you a couple months ago, we had arrived at Children’s for yet another overnight EEG and I did not have high expectations. Our daughter was on her third anti-seizure med, and her condition was no better. In fact, things had gotten worse. We knew that it was fortuitous that you were going to be on the ward at the same time we were in the hospital because you are only scheduled to be on rotation twice a year. Upon our arrival we were told that you would not be our attending physician.

My husband is an incredible and thorough advocate for our daughter and our family. He made several phone calls, and somehow convinced somebody that we needed to see you. Hours later a nurse came to tell me that you had agreed to “take us on” and we were being switched to your service. Her words were, “This is unprecedented.”

You believed she met the criteria for Landau-Kleffner Syndrome (LKS) [– a disorder characterized by continuous electrical discharges during sleep resulting in intellectual deterioration and loss of language.] Your simple kindness made an already frazzled and emotional mom want to break down in tears. You prescribed a high-dose diazepam protocol, and her spike activity, which at times has been at 85-100%, was knocked down to 2%. (We later learned from Dr. C that you made bets with some of your students about whether or not the protocol would work. You won. 8) ) Now, after two months of being on a smaller dose of diazepam and another anti-convulsant, her EEG has been cleaned completely!

Yesterday we began slowly weaning her from the diazepam. We know that there is a good chance the seizure activity will return; thus, she will remain on one anti-convulsant drug.

But for now, the electrical storm has quieted, and Rhema has a chance to learn.

In the past few weeks we have seen significant changes:

Her receptive language has increased – she seems to understand more.

She is now completely toilet trained

In therapy, she is looking, listening, engaging, trying out sounds and repeating words

Days after the protocol, I believe she spoke her first sentence. She said, “I… want… pop.” (popsicle).

Recently, her behavior has improved… 4 Perfect Behavior Days at school last week!

A few months ago I could not imagine her doing these things.

I had called this a little miracle. I was wrong. This is a HUGE miracle! I am so grateful to God, for although the road has been difficult, He has been faithful to provide for us every step of the way. Jeremiah 29:11 says “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

There is no way of knowing how far she will go in her language development, but her name means “the spoken word”. We hold on to that promise.

I cannot put into words how wonderful it is to know that as my little girl drifts off to sleep, her brain is no longer wracked with continuous seizure activity. It does this mother’s heart good knowing that we have done everything we can to help our daughter learn and grow… we have given her a fighting chance, and that… Simply. Feels. Good.

My mouth will speak words of wisdom;
the utterance from my heart will give understanding.
Psalms 49:3

Thank you so very much,
Rhema’s Mommy

Working with her therapist: