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 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.

 

Allergyville

Hope has severe food allergies. So I was glad to make it through the Halloween hype and abundance of chocolatey, nutty candy without a trip to the emergency room.

We’ve had a string of infractions lately that have added a few more gray hairs. Talk about learning to trust God with my children…

Hope had allergic reactions to my breastmilk

Every time I leave her in the care of others, prayers are whispered that she will be safe.

Last week, I got a call from her nursery school: “We were tracing letters of the alphabet in flour and….” Ugh, I already knew what was coming.

Then today I got a call from the school where Hope is a peer model: “She ate another child’s chicken nugget and instantly broke out in hives around her mouth…”

In her almost 3 years of life, Hope has been sickened enough times by touching/eating a forbidden food to know better than to just put anything in her mouth. She has learned to be very careful, to question foods that are unfamiliar. When asked, she can list ‘nuts, eggs, dairy, wheat, soy and sometimes corn’ as the foods she’s allergic to. So I was surprised to hear that she had eaten a chicken nugget without hesitation.

When I got to the school to pick her up, my friend Dawn told me that Hope has the same lunch bag as another child’s. Their bags got mixed up and Hope ended up eating the nugget. I understood the mix-up, but was still confused. When I saw Hope, I asked her what happened. (At this point she’d already received a good dose of Benadryl and was doing fine. Thankfully there was nothing in the nugget that would cause anaphylaxis.)

She said sadly, “I thought it was my surprise. I thought I wasn’t allergic anymore.”

Oh.

On school days, I always pack a “surprise” in her lunch.

She is such a good sport. I learn a lesson from her every time I watch her at a birthday party. While other children enjoy pizza, cake and ice-cream without a second thought, she is content to eat her rice and gluten-free pretzels. There have been times when I have wanted to utter a “Woe is me” on her behalf. But she never complains, never compares, she’s just happy to be there.

“Hope, baby,” I said. ”You’re still allergic.”

Her head was down, but I could see the worry in her eyes.

“I’m not mad, honey. We’ll go home and Mommy will make some of your special nuggets and we’ll watch Strawberry Shortcake. O.K.?”

Then a grin popped onto her face,

“Well, Praise the Lord!” she declared.

 

Children’s Hospital Boston recently published an article on Fighting Food Allergies.

Smelly Pebbles

For the past two months women from the church have faithfully shown up on my doorstep to offer their help. Every Saturday, one or two women set aside a few hours just to spend time with me and the girls, assisting in any way they can.

I am very blessed, yes?

Note: If you are ever reluctant to attend church because you have a special needs child, think of me. Sunday mornings are always an adventure, but my family has been totally embraced at church. People genuinely care about Rhema; they try to understand her and meet her needs. I never imagined I could find such a supportive, loving community.

Anyway. Yesterday, a woman whom I recognized but had never met before came to help.

I suggested we walk to a new playground. Normally I would just drive, particularly because Rhema is in a squat-walk phase (she takes a couple steps and then squats, takes a couple steps, then squats). But it was such a beautiful, warm fall day, and I had an extra helping hand, so we decided to walk.

The walk took a looonnngg time with Rhema squat-walking the whole way, but we finally made it to the playground. I was glad for the adult company and the chance to get to know a new friend. I was happy to tell her more about Rhema and how her autism affects her. She was great with Rhema and did not hesitate to try and engage her, which I truly appreciated.

Rhema squealed and ran around the playground while R and I chatted.

Then I looked up and saw Rhema near a slide and her pants were down, her creamy bare bottom a contrast to the autumn leaves.

Uh oh.

I sprinted over to her with my new friend right behind me.

“Pants on,” I said a little too cheerfully as I quickly slid her pants back up.

Rhema stuck her hand in the back of her pants and dug around. I pulled her hand out, but she stuck it back in. I pulled it out, she stuck it back in. Starting to feel eyes on us, I yanked her hand out again.

Finally, she acquiesced. Round 1 to mama.

Then, with her fingers on the outside, she started slowly working something down her pant leg, intending for it to fall out the bottom.

“Oh!” my friend said. “She must have put some pebbles in her pants and needs to get them out!”

Um, yeah. Sure. O.K.

I knew the truth, but oh, I hoped I was wrong.

There we stood, by the slide, waiting expectantly as Rhema worked the “pebbles” down her pant legs to her socks. One by one, they rolled out onto the new playground turf.

We bent over to inspect them and then got hit in the face with a bad odor.

They were the smelliest pebbles we’d ever seen.

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.

unedited

written a couple years ago, still true today

 

God, I really want to know what you have to say about autism.

Can’t communicate
Can’t relate
Learns differently, “hard to teach”
Seizures in the brain, gut issues
When is she hurting?
Wish everyone knew what this was like
for a day, for a night
So hard to be here
Sensory sensitivities
Out of order
Alone, cannot share
Pain
Torment, stim, stim, stim
Behaviors
Frustration
How do I let it go God
How do I be at peace
What do I do with this hope, and facing reality, and all the days ahead
Can’t help but be sad for the things I’ve missed with her
But I still believe
in the middle of the night
I’m so tired
I’m so thankful
I have you
I have her
Speak to my heart
Give me the Word that will bring new life

Lord, will I get a miracle like that?

And then she smiles…

I know I already have it.

Have to keep believing there is something amazing. And it will be You, all You.

That’s the one thing I know for sure.

Homecoming

I’m waiting for a call.

A call to say that he has arrived safely in Kuwait.

Even as he goes out, I am already thinking of his coming in.

I think back to five years ago when a handful of spouses gathered in an old gymnasium in Katterbach, Germany in the dark of night. There were babies and small children, and wives who were suddenly decked out in their best clothes. We were waiting… like the ten bridemaids of the Biblical parable, we were waiting for the groom, with oil in our lamps.

I’ll never forget walking into that gym and seeing the signs that caused a lump to form in my throat.

The first thing I did was to check the manifest. To see, for sure, if my beloved was on the list. He’d said that after a long, hard year he was coming home. But in the Army, you just never know what might happen, so I stared hard at the list until I found his name. And when I did, I bounced an 11 month-old Rhema on my hip, and let my heart rest for the first time in a good while.

The hours dragged on and we chatted, laughed, traded babies and tried to be patient.  Around 2 in the morning, the announcement came that Bravo Company, 3rd of the 58th - deployed in support of Operation Iraqi Freedom – had landed on the kaserne. While in Iraq, they had set up an airfield for coalition aircraft in Saddam Hussein’s hometown of Tikrit, and now they had returned to their home away from home in Katterbach. 

It would still be hours before we could see them, as they had to take inventory and turn in their weapons. It seemed like forever.

Then a screen descended, the lights went out and a music video played.*

The song finished, the screen was raised… and then we saw them. A small, weary company of air traffic controllers, led by my husband. Before being released to their families, they stood almost humbly, in formation. You could hear the tears.

I know they were praying, quietly thanking God along with us. Thanking God with all their hearts that not one of them, not one, had been lost.

So here am I again. Waiting… for a homecoming.

While I wait, I am aware that we are all waiting for something.

May your waiting make you stronger. 

May you know His peace that passes understanding… while you’re in the in between.

May you know His love surrounds you,

May He be your portion…

in the waiting.

This I pray.

 

Thank you for allowing me to blog ad nauseum about this deployment! Today is a hard day knowing that Brandon is finally flying away. We kept hoping to get an email saying, “Stop! Psych! You’ve been punked.” (Sigh). I know God goes with him…

“Now, Lord, not my will, but Thine be done. I know not what to do; I am brought to extremities, but I will wait until Thou shalt cleave the floods, or drive back my foes. I will wait, if Thou keep me many a day, for my heart is fixed upon Thee alone, O God, and my spirit waiteth for Thee in the full conviction that Thou wilt yet be my joy and my salvation, my refuge and my strong tower.” —Charles Spurgeon

*The following video was played at the homecoming ceremony just before we were reunited:

More Extraordinary

It’s 2:30 am and she’s shrieking and running circles in her room. I sit up in bed, realizing that she’s been doing it for at least a half hour. Got to get there, I think as I groggily rush down the cold hallway, before she goes to the bathroom on the floor.

As I open the door, my eyes take a moment to adjust. But I already know the scene. The light is on. She has ripped all the blankets and sheets off her bed. A page from a coloring book, is torn into tiny pieces like confetti on the floor. She is unclothed, running wildly around the bed, lost, completely lost. And I’m too late. The floor is her toilet bowl.

This is the version of autism that grieves me. The version that still devastates me.

Will it always be like this?

In my disheartened, half-awake state, I clean her and the mess. Put her pajamas back on. Put the sheets back on. Put her back in bed. Turn out the light. I go through the motions, knowing that moments later, she will undo it all. There will be no sleep tonight.

*
It’s 10 am and I’m rushing to her school for an emergency meeting. God, give me the words. Let this be the right decision. I will tell them why we think it’s best for her to be transferred to another school. Such a hard decision. She’s attended this wonderful school for children with autism ever since she was three years old. We are indebted for life.

But it’s time for her to be in a place of great expectations.

I practice what I will say. “We underestimate her so often…”

My mind drifts back to just hours before when I looked upon her and saw nothing but a helplessly, hopelessly brain-injured child, hyper and isolated.

I falter.

And then feel the hand of God steady me. Catch my tear.

“I just know there is so much more. There’s more in there, in her. No, even more than we think! I just know it. We’ve only scratched the surface. She’s shown me there’s more.”

Please dear God, help us find the way to unlock what’s inside.

*
After the meeting I stop in her classroom. I see her before she sees me, and I love her all over again. And then, she tentatively gets up and comes over, laughing all the way. I stoop, and she, the giggling girl, tries to climb me. “Hi,” I say. “Hiiii,” she mimics in a high-pitched voice. It’s the first real greeting in a really long time, and I treasure it.

I doubted you for a moment, my girl. But I’ll never stop believing there’s more extraordinary for you.

 

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…” Eph. 3:20

Excuse Me

 

I expect my girls to be polite and mannerly.

Hope, however, surprises me with her bathroom humor. I didn’t teach her any of it, so I’m always startled (and amused) by the stuff she comes up with while sitting on the potty.

Like many children, she seems to think the passage of gas is just about the most hilarious thing to happen in her day.

And she will do it at the most inopportune times. In the presence of others, I will act shocked that my child could do such a thing and I’ll say, “Hope! You need to say…”

And she will dutifully supply an ‘Excuse me.’

 

Rhema had a neurology appointment last week.

We arrive early, and I shuffle the girls into the bathroom. The bathroom is small with just two stalls. One stall is occupied, so we cram into the other one with all our bags and jackets.

Hope settles onto the toilet, and all is quiet.

Suddenly a “bottom burp” sounds from the other stall.

Hope dissolves into giggles.

I shake my head at her fiercely, begging her with my eyes, to maintain some couth.

She sobers.

Then she leans toward the thin wall and asks the occupant of the other stall,

“What do you say???”

Silence.

Her voice has my patronizining tone as she calls out again,

“What do you say?”

I’m not saying a word. The occupant on the other side isn’t budging either.

Hope is expectant. She enunciates each word as if she doesn’t get an answer someone’s going to be in trouble.

“What.do.you.say???”

Daddy’s Girls

Hope and Rhema’s all-time favorite person in the world paid them a visit this weekend. He’d been away for six weeks when he slipped in the house early Friday morning while they slept.

When Rhema awakened he went to her room, scooped her into his arms and carried her down the stairs. They sat on the couch, and Rhema, the child who never stops moving, was still.

She stayed curled up in his arms, making her soft babbling noises for a long, long time. For once, she was not frantic.

It’s so hard to know what she is thinking and experiencing at times; how much she processes and even what she chooses to reveal is, most times, a mystery. But if I could hazard a guess as to what she was feeling as she sat there with him, it would be… Relief… Contentment.

*

Some time later when we heard Hope stirring, he went to her room, and I heard the most joyous sound of surprise and delight.

“Daddyyyyy!!!!!!!”

And then she couldn’t stop talking. First, she said to him what people always say to her when they haven’t seen her in a while:

“Well, Daddy, you’ve gotten so big!”

As he lifted her for a dinosaur hug, she patted his head.

“I love your hair!” she exclaimed as if trading compliments with a teenaged girlfriend.

Then the two of them got down to business. Ever since he left, Hope has been having nightmares. She insists that there are birds in her bed that “wake her up” and “peck her knees.” Daddy explained that last night, while she was sleeping he came in and caught all those pesky birds and sent them on their way.

Problem solved.

Still in his arms, Hope looked over his shoulder with a smile, and whispered to me,

“Hi, Mommy. I found my Daddy.”

*

 

After a fun day at the pool, we were all in the kitchen getting ready for dinner. I realized that Rhema was saying “I luh yew” over and over in her sing-songy stim. She was wandering around the room, looking at no one in particular, repeating the words, as if to herself.

“She’s saying, ‘I love you!’”, I said.

And then all four of us started singing ‘I love you, I love you, I love you’ out loud, in that same Rhema-voice, as we busied ourselves in the kitchen.

*

The weekend wasn’t all perfect. We still managed to forget to cherish one another at times.

But I learned something recently in a Beth Moore bible study that has helped me view the imperfections in my family with new eyes: “Unless the Lord builds a house, its builders labor in vain;” (Ps. 127:1). When you view the “house” in that verse in terms of family, you realize that God is the one who custom-builds our families. Every member is there by His design, His composition, His assembling. Beth Moore advises, “Be careful not to expect your marriage, parenting, or even your singleness to be exactly like someone else’s.”

I am praying that the Custom Builder will continue to fashion, repair and strengthen my family and home even while we are separated for over a year.

We had to say goodbye again early Monday morning, but the weekend was an unexpected and priceless gift of time for which I will always be grateful.

 

Brandon is in his final stages of training at Ft. Stewart. His equipment has been shipped overseas, and he will finally deploy to Iraq within the next 2 weeks.

I saw this picture/article about a “Little Soldier Girl who “Didn’t Want to Let Go” as her father shipped off to Iraq. It reminded me of my girls.

*Photo taken by Abby Bennethum

The Autism Awareness Bandit

The other day Rhema casually got out of the minivan, walked around to the back, ripped off our Autism Awareness car magnet and tore it into pieces.

I seriously stood there dumbfounded and disturbed.

What in the world was that supposed to mean?

“But… but… now our van will feel naked, Rhema! How am I ever to find the van in a crowded parking lot without that magnet!”

She seemed oblivious to my ramblings.

I’ll go inside and order another one right away. People must know that we’re touched by autism. People must be aware.

I felt somehow stripped of my identity. “I am of the autism mother tribe. I am blogger. I am educator. I am advocate. I am… in need of a chill pill.” I laughed at myself.

A couple days later we were walking into the grocery store when Rhema suddenly made a beeline for an SUV in the parking lot. I spotted the autism ribbon on the back, and then realized Rhema’s intentions.

“No, Rhema, nooooooooooooooooooooooo.”

The girl has eyes like a hawk – it doesn’t even seem like she’s looking, but she’s sees everything.

I caught her before she could break the magnet into pieces. Hoping no one was watching, I slapped the magnet back onto the vehicle, grabbed her hand and rushed into the store.

When we came out the SUV was still there, and Rhema headed straight for the magnet. But this time I was prepared, and I literally carried her back to our car.

I had to giggle. My child with autism just might manage to remove all the Autism Awareness ribbons from the whole town!

Yesterday we were in a crowded waiting room at her therapy center. Rhema was playing with a train set while her teacher and I talked. I looked up and noticed a ribbon magnet on an office door clear across the room.

Oh no.

Rhema seemed to see it the same time I did because she bolted towards the door.

In mid-conversation, I lunged for her.
Missed.

I tripped over a little kid on the floor, scrambled up, bumped into someone and finally caught up to Rhema. But it was too late. She’d already broken a piece of the magnet. I grabbed the pieces, tried to fit them together and put them back on the door.

I turned around to see the occupants of the waiting room looking at us curiously. No one seemed surprised, they were probably all used to the unexpected. (Speaking of the unexpected, you must read this post!).

“Rhema seems to have a thing for Autism magnets,” I announced.

So if you have one, and you discover it’s missing, call me and I’ll replace it.”

 

By the way, I still have not ordered a new magnet. Maybe something different like Floortime Lite Mama? Maybe nothing at all for a while. For a time, autism or ‘life with autsim’ was all-consuming. It just isn’t anymore… I’m finally finding balance.