Leaf Play

Play for me is where the thinking drifts off in floating clouds above

Where I can be me in unity of peaceful things, I love.

Entertaining self in the world of play emitted from life’s exposure

Allowing words and thoughts to be created by me the great composer

Oblivious to those around me as if they don’t exist

Playing with my inner thoughts of things I cannot resist

Lining them up in playful order comes a pattern to my eyes

When one comes and alters the purpose of my visions simply dies

For me pleasure comes from the way my play is to be

Sit quietly and observe what I am learning about me

 Patterns. Patterns everywhere cause my adrenaline to consume me

Patterns are my favorite play, creating it in ways it was meant to be

Allowing myself to be alone to discover what my play is meant to bring

For inside myself this play of mine brings me happy things.

                                              Written by Sondra Williams

 

*Photo by Raina Roy

Why Mama Eats Blue Cotton Candy

“Children may be deductible, but they’re still taxing.”

~Mell Lazarus

 

So last week I got desperate. It had been raining non-stop all week, Rhema was home from school and out of her normal routine, and both girls were going stir crazy. They needed to go to that special place ‘where a kid can be a kid.’ So I did the unthinkable and took them to (gulp) Chuck E. Cheese.

As soon as we got to the place, the girls took off in opposite directions. I felt like a guilty boyfriend on a date with two women, running from one to the other, supplying tokens and assisting them onto rides.

I was buckling Hope into the Chuck-e-Derby when I saw a commotion near a basketball game. The game consisted of a big shoe in which the balls come down the front of the shoe and you shoot baskets into the top. Apparently Rhema crawled in through the opening in the front and was standing inside the “cage” area where the basket is.

Any time someone took a shot Rhema was there to happily catch their ball and keep it for herself. She was tossing up balls with a squeal of “Wheeeeeee!”. She was like Air Jordan with a couple of dunk shots and some serious hang time from the rim. (That’s my girl!)

I climbed up the outside of the shoe in my most dignified manner (- we had an audience.) And, while balancing on shoelaces, I lifted her out.

Then Chuck E. Cheese himself appeared. Rhema’s eyes widened with delight as she ran over and held up her hand for a high five. I have never seen such good eye contact and attention from her as I do when a furry, life-sized character is involved. I was amazed at how interactive and engaged she was. Hhhhmmm, I’m thinking I need to don a big, gray mouse costume and ask all of her teachers to do the same.

I had to ration Rhema’s tokens because she loves slots and likes to go around inserting her tokens into every slot she can find.  She lives by a what’s-yours-is-mine philosophy. If she saw that all the horses on the merry-go-round were occupied she’d simply climb on the back of some poor child’s horse… or better yet, that child’s back. If she saw a baby’s unoccupied car seat, she’d settle in and make herself comfortable. She was instantly attracted to an old lady’s walker because it had a small basket on it – just perfect for sitting in while pushing yourself across the room.

Not long into our adventure, Hope predictably began sneezing a lot. She had been exposed to some sort of allergen and was having a mild reaction. Hope and I sat down, I wiped her nose between sneezes and gave her some Benadryl. I kept an eye on Rhema bouncing around, but realized after several minutes that I did not see her.

I did spot a family of four at a booth across the room. The mother, father and two children seemed frozen and all had bewildered looks on their faces. I looked again, and there sat Rhema in the booth with them, contentedly chowing down on their pizza and sipping their soda.

She hasn’t learned all her manners, but, clearly, she believes in sharing.

I rushed over with apologies. Rhema had finished off half a slice of cheese pizza, and the mother graciously offered me the remaining portion. Never mind the major gluten and casein infraction… I fought the urge to giggle.

On our way out of the land of 25 cent fun, I bought myself a big bag of blue cotton candy. After putting the kids to bed, I tore into my cotton candy like a madwoman. Lots of blue sticky goo on my cheeks and fingers and in my hair.

It was mind-numbing.

It was euphoric.

Yes, friends. Why Mama Eats Blue Cotton Candy is my version of Why Mama Drinks.

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.

Autism Safety Measures

I realized that not all homes are Rhema-proofed when we visited my sister over a year ago.

Rhema and her older cousin Lexi were sitting in the living room watching TV, while my sister and I prepared dinner. The girls were being “watched” by my brother-in-law in the living room. Rhema was in a T-shirt and her… unmentionables. She always removes her pants to get comfortable. (It’s still humorous to us when we visit someone’s house, and Rhema takes off her pants as soon as we get in the door. The host will always say, “Oh! Does she need to use the restroom?” “Nope,” we say, “She’s just making herself at home.”)

I was chopping tomatoes, and my sister and I were laughing about something in the kitchen. I suddenly realized that her husband was in the kitchen laughing along with us.

Instantly, I knew.

I ran into the living room. Lexi was in her same spot on the couch, mesmerized by the TV. Rhema was long gone, and the front door to the house was swinging wide open. The adults ran out of the house, up and down the streets, calling Rhema’s name.

I remembered a Nicholas Sparks book I’d read years before I had children called The Rescue. It was about a young, speech-delayed boy lost in the woods in the middle of a storm. The mother was a nervous wreck because she knew the boy might not answer to his name being called. Just like Rhema, I thought. She won’t call out, she won’t respond to her name. How will we find her?

Thankfully, mercifully, it did not take long to find her. She was beneath the deck of a house, crouched on the gravel. I found her there, barefoot, with no pants, happily playing with rocks.

I’m here to tell this story so I guess I did not have a heart attack.

 

Rhema, is for the most part, fearless. She has no sense of danger. She bolts. She wanders, although I believe she has a destination in mind – (a park she saw once or a curious tree we passed in the car), she seems to have no real concept of space and time. She’s quite determined, quite resourceful, and we now have more than enough escape artist stories. Although she has gotten so much better at responding to her name, she cannot tell you her name if asked.

So. After brainstorming with Carrie, whose daughter wears an ID necklace,  I would like to present my latest attempt at risk management:

 

Medical ID bracelets from N-Style ID.

Both girls have them. Hope’s bracelet lists her multiple food allergies and asthma. Rhema’s has her name and phone numbers. (Of course, Rhema did not want to wear it at first but seems to have adjusted.) Our next step is to use the MedicAlert system, which uses an RF tag and can contact families within minutes of a child’s disappearance. (I believe JoyMama uses a similar program called Project Lifesaver).

 

*Tanya at Teen Autism has written some very helpful and informative posts on Autism Safety and Risk Management.

Wonder Child

We’ve managed to accrue a few of those toy laptops over the years. There’s the Barbie one, the VTech one, and the Disney Princess one.

I tried once, a long, long time ago to teach Rhema how to play with the laptop. But I became discouraged quickly, because it turned into a “hand war” with her trying to push all the buttons while I tried to stop her from pushing all the buttons. She was so focused on the buttons that I could not get her to look at the screen. (A little joint attention would have been helpful). The same is true for looking at books together – we always end up in a hand war.

So Rhema just perseverates on the laptop toy, turning it off and on, pushing the same button repeatedly until I take it away from her. For a year, I have not attempted to show her how to use it correctly.

Just assumed she couldn’t.

A couple nights ago, Rhema found the VTech laptop in my bedroom. On the spur of the moment, I sat down on the bed, put her in my lap and opened the computer. The hand war ensued as we battled over the On/Off button.

Then she stopped trying to press the button, and instead tapped her hand to her chest two times. I immediately recognized the gesture as her saying “for me” in sign language. Years ago we tried teaching her some sign language, but it just didn’t take. (Her poor motor planning and lack of receptive language made it very difficult).

But here she was signing “for me”, and I understood that it was her way of saying “my turn.” So I let her turn the laptop off and on.

Then it was my turn, and I managed to quickly get us into an alphabet letter identification game. Suddenly I was determined to teach Rhema how to appropriately play with this laptop. Rhema knows some, or most, of her letters… we think. (She will repeat some letters if we prompt her, but we never know for sure if she’s just repeating or if she really knows them.)

The first letter that appeared on the screen was a ‘D’. I was holding Rhema’s hands so that she could not turn it off. I cautiously let go of one hand to see what she would do. She signed “my turn.” (Amazing!) Then she casually ran her fingers over the keys and deliberately pressed the letter ‘D’.

Oh my gosh. She did it. I almost fell off the bed.

But then she was turning the laptop off and on again. I caught her hands, got us back into the game and waited for the next letter.
‘R.’

I know Rhema knows the letter R. But I still did not know if she understood that she had to press the R key.

She did. She did!

Don’t get excited. Let’s try another letter.

‘I’

She skimmed her fingers along the keyboard, found the ‘I’ key and pressed it. She started stimming on the I key, pressing it repeatedly. But I didn’t care. I grabbed her and spun her around.

“Good job, Rhema. You did it! You did it!!!”

She looked a little bored, not nearly as excited as me. It was if she was saying, “Woman, chill. What? You didn’t think I knew how to play this?”

We played with it for another half hour. I had to continually break her out of stimming patterns, but she definitely “got” the game and only made a couple mistakes.

‘Cause you’re a wonder child
Living in a world that’s all surprise
And you make me see things through your eyes
Wonder child, this I know
It’s no wonder that I love you so
Wonder child, wonder child

(-Old Sesame Street song)

 

I recently told my friend Cha that Rhema had moved to a new level of PECS at school. She is now working on attributes, specifically colors. So if she wants a red popsicle, she must build the sentence “I want – red – popsicle” using her PECS symbols.

“It will be interesting to see how she does, because we’re not even sure she knows her colors. But that girl, she keeps teaching me again and again to never underestimate her.” I said

“I bet she does know her colors,” Cha said. “Wouldn’t surprise me in the least.”

You know what?

Me neither.

A Blessing on the Door

Thank you. Thank you for all of the well wishes and prayers after my last post. It meant more to us than you can know. Somebody must have really prayed because Rhema has been able to sleep for the past few nights! We finished the EEG, she went back to school yesterday and we are waiting to discuss the results with her doctor…

-

A couple years ago I began writing out Scripture passages and posting them on Rhema’s bedroom door.  There was the verse about her name, and passages about Jesus healing a mute boy and another who seemed to suffer from seizures.

At that time, Brandon and I were going through a grieving process of sorts.  Our bright-eyed little girl who used to laugh and clap and say “Hi” on the phone was now distant, unreachable and painfully silent. We felt like we had somehow lost her. 

I didn’t know what Brandon thought about the verses I put up on Rhema’s door.  Maybe he thought I was losing it?

And then one day I noticed a new note had been placed at the very top of her door:

  

A Blessing

from your father and your Father

The Lord has plans for you, Rhema. You will one day call upon the LORD, He will hear you, and He will be able to listen to your voice as you seek Him.

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. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you…”   Jer. 29:11-14

 

When she comes in, the blessing is there.

When she goes out, the blessing is there.

(In Old Testament times, fathers would often say a blessing over their children, and this was an important and valuable tradition that greatly influenced the life of the child.) 

My children are blessed with a father who loves to bless them.

He teaches them. 

He affirms them.

He champions them. 

He upholds them. 

He loves them so well, it shows.

Daddy and Hope

Your girls (all 3 of us) are grateful for your love – it is the life force of our family.  Happy Father’s Day!

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. 

Where’s Jesus?

This one is for James.

 

It’s important to us that both Rhema and Hope learn about our faith in God.  Hope has a toddler Bible and Brandon enjoys teaching her Bible stories and verses. He has taught her to quote John 3:16, and we are often amazed at the things she retains and understands at 2 years old.

 

The other night I heard a bit of their conversation.

“Hope, where is Jesus?”

(I thought, That question has been asked and debated for thousands of years. Oh, to have the faith of a child.)

 

“He’s in heaven.”

(Do I have a future Biblical scholar on my hands??)

 

“And where else?”

“In our hearts.”

(Send this girl to seminary! Break out the Hebrew and Greek!)

 

“Hope, whose heart is He in?”

“He’s in Daddy’s heart…

(Oh, bless this child! I hear the brush of angel’s wings.)

….And Mommy’s heart…

(Out of the mouth of babes, I tell you.)

…And Dora’s heart…

(vinyl scratch)

…And Boots the monkey… And…”

 

Hhhhmmmm.

 

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

Want Him in your heart?

Just a Thought

My Hope Baby no longer wants to be my ‘Hope Baby.’ I’ve always called her Hope Baby, but now she wants to be called ‘Hope Big Girl.’ Because, you know, at 2 ½ years old, she is so not a baby.

I don’t want her to grow up. Wah!

I told Hope that I wouldn’t mind changing diapers for the rest of my life if she would just stay my cuddly baby forever.  I’m sure many parents know this sentiment ( – maybe not the changing diapers part, but you know what I mean). We want to hold onto to their adorable baby-cuteness and innocence and exuberance for as long as we can.  (My favorite is Pixiemama begging her son Finn on the eve of his birthday “not to turn two tomorrow.”)

It occurred to me that I never felt this with Rhema.  I never wanted to hold onto her babyhood.  Before her diagnosis, I spent most of the time worrying about how different she was from other children. After the diagnosis, I was busy racing the clock, trying to play catch up, willing her to reach those elusive milestones.  And yes, in many ways I was just trying to survive… to keep my head through endless meltdowns and sleeping problems and poop art and feeding disorders and sensory issues and oodles of therapy hours. Like Adam Sandler in the movie Click, I often wanted a universal remote to fast forward to the day when she was “fixed.”

She’s only five now. But she is my big girl, tall, lovely and mysterious. So not a baby anymore. And I realize that I did not enjoy her as much as I could. Looking back I wish I had cherished her more.

Would I still do all the therapy?  Would I still send my then 3 year old – with a backpack bigger than she was – to a special school an hour away?  Would I still read all those books and articles, attend all those meetings?  Would I still fret over special diets and supplements?  Yes, yes, and yes. I believe she/we needed and benefited from all of it.

But I would have taken more moments to just be enamored with my baby girl.

So I say, if you have a young one on the spectrum, delight in her/him now. Be purposeful about it.

 

Today I’m choosing to be thankful for today, and trusting that God will bless me with time to thoroughly treasure both my girls.