Wake Me Up When It’s Over

Yesterday Rhema had her scheduled MRI at Children’s. The purpose of the MRI is to identify starting points for her seizures and see if there is any structural damage in the brain. Since Rhema has not really been responding to medication, we are hoping that the MRI might provide us with some information. We will not have the results for another week or so.

I had to take Rhema by myself, and Brandon stayed home with Hope. As hospital visits go, there was a lot of waiting. Waiting makes both of us antsy. In the MRI waiting area, Rhema was not the least bit interested in Mickey Mouse on the TV or the crayons and coloring book I had brought. She preferred to run around the room, jump up and down on the chairs, and then pound on the receptionist’s computer keyboard. Lord, this child is hard to keep up with. While I was filling out paperwork, Rhema was jumping on a chair and a man came out and sternly told her to be careful and to stop jumping. He was completely ignored. I almost laughed, but simply said, “Thank you.” I mean, how do you even begin to explain?

Rhema noticed a woman in the room who had just started unwrapping her expensive Au Bon Pain sandwich. At this point Rhema realized that she was FAMISHED – (I hadn’t fed her because she had to have an empty stomach for the anesthesia).

The scene unfolded in slow mo: I lunged for Rhema as she dove for the “Chicken Ceasar Asiago on Ciabatta” sitting nicely in tin foil on the woman’s lap.

Too late.

She didn’t eat it, but she managed to get her hands on it and “disassemble” it a bit.

“I’m so sorry,” I said, as I tried to rearrange the sandwich with the tin foil wrapper. Then I placed the sandwich back in the woman’s lap before she could say a word, grabbed Rhema and we went for a walk. It occurred to me later that I should have at least offered to buy the lady another sandwich, but these things always occur to me after the fact.

When we returned to the waiting room, the woman was gone, thankfully. There were clowns there instead who got Rhema to color a little bit.

Rhema did well with getting her IV. This is pretty awesome for a child who can be very tactile sensitive – she cannot stand stickers, band-aids, or having an admission bracelet on her arm. She’s kind of used to the IVs and needle pricks by now. But the problem is always keeping her from pulling the IV out. The nurses wanted to give her IV fluids before giving her the sedation drug. So we waited and waited while the fluids dripped in. Rhema cried and fussed and fought to get all the tape and gauze off her arm. We tried distracting her with bubbles and singing and stickers (forget it). Rhema kept jumping off the bed, taking my hand and leading me to the door. She wanted to leave, IV pole and all.

Finally the sedative was added to the IV, and I held her in my arms. Most kids fall asleep quickly. Rhema, of course, fought it. The nurse even mentioned that we might have to give her another “bolus”, which is another strong dose of the drug. But in one quick instant Rhema was suddenly silent with her pretty head drooped over my shoulder. The nurse smiled and whispered, “I think we won.”

The nurses were so kind and wonderful. I love good nurses. For a moment, my heart feared as I looked at my little girl asleep – so uncharacteristically still with her mouth half open, cardiac monitor on her chest, oxygen in her nose, pulse monitor of her toes, head tapped. She looked like an angel. Just before she was slid into the MRI chamber, Rhema started sighing softly, and one of the nurses said it sounded like she was singing.

We’ll wake you up when it’s over, little one.

What Does A Pig Say?

Rhema knows!
She was looking at a picture book with her therapist when I heard Rhema whisper,
“Oink, oink!”
I looked up, but could not see what she was looking at in the book. I asked her therapist,
“Did she just say ‘oink, oink?’”
Her therapist smiled, “Yep.”
“Is she looking at a pig in the book?” I asked while jumping up to see for myself. Brandon was there, too. And sure enough, there he was, a pink, chubby pig looking up from the page with his arms crossed.
Woohoo! I’ll take that as spontaneous, appropriate language. I had no idea Rhema knew what a pig said. It looks like all of the oinking the past few years has paid off. Thank you, Lord. =)

Sense of Vision: Eye Contact

“There is life in a look at Him…” - Charles Spurgeon

Eye contact is looking another person in the eye, and without good eye contact, full communication cannot take place. It has been suggested that of all the ways we communicate with people, eye contact is the most important. So many aspects of communication rely on eye contact: attention, intent, conversational turn-taking, etc. When engaging in conversation with someone, you not only hear what they say, you see what they say. If my husband walks away to do something while I’m trying to tell him something, I feel like he is not listening to me. And you just have to think back to your dating days to know that there are those conversations where no words are spoken – everything is communicated with the eyes.

Poor eye contact is one of the most common symptoms of autism. I’m not sure when Rhema began losing her eye contact – somewhere between 12 – 15 months – but we sure knew when it was gone. She has these huge beautiful brown eyes – in fact, when she was an infant she looked kind of freakish to me because her eyes were so big. Now, when she gives good eye contact, it is like a gift, I just want to gaze into those gorgeous eyes. Some people with autism have explained that they avoid eye contact because they cannot always understand facial expressions, which can be distracting and unpredictable, preventing them from focusing on what is being said (link). But eye contact is vital, and especially in young children, the more they see, the more they will learn. Every time Rhema gives us eye contact, a connection occurs.

If you care about a relationship with God, perhaps you should consider how good your eye contact is. I have asked myself the question: How much time have I spent lifting my eyes to the Lord? Sometimes when we are trying to establish eye contact with Rhema, she will avert her eyes and gaze away. I have watched her therapist create “blinders” by putting her hands at the edges of Rhema’s eyes, so that Rhema cannot look anywhere else but into her therapist’s eyes. This always makes me think of how Jesus must often want to put blinders on me. Too often I focus on the circumstances around me instead of looking to Him, or I will regard God with that “peripheral vision” (so common in autism) instead of looking at Him straight on.

How do we get good eye contact with the Lord of Lords? I think, first, perhaps we humble ourselves and say, “Lord, I want to see you. Open up my eyes. Show me your face.” We read our Bibles. We pray. And we look for Him. He will show Himself. For the eyes of the LORD range throughout the earth to strengthen those whose hearts are fully committed to him. 2 Chronicles 16:9

It’s intimate, no question. The eyes are the doorway to the soul, isn’t that what they say? (Matt. 6:22 says that the eye is the lamp of the body). But if we truly want to know and hear the Lord better, we must look at Him. People with autism are more comfortable looking into the eyes of those with whom they are familiar – the ones they love and trust. So it can be with God. I believe there is so much He wants us to see.

“Turn your eyes upon Jesus
Look full in His wonderful face
And the things of earth will grow strangely dim
In the light of His glory and grace.”

Next: Sense of Vision - Joint Attention

Relationship from an Autism and God Perspective

One of the things I have been amazed by is how much autism affects one’s senses. The way my child see, hears, tastes, smells and touches the world around her is so unique. It is a gift, in many ways, because when she intently gazes at a blade of grass, I believe she sees patterns and details that I will never notice. But her senses are also troubling to her – sometimes too strong, sometimes too weak, rarely in between. And for so many reasons, this makes it difficult for her to relate to the people around her.

When her back is turned and she is a million miles away, I yearn to reach her. My arms are literally outstretched. Sweet child, I want to see you. I want to hear you. I want to touch you. I want to know you.

I am determined to see God in new ways as we walk down Autism Road. Those of us affected by autism know how cherished and precious those “connections” are with our children – that moment when we are truly experiencing something of them and they are experiencing something of us. Maybe it’s as simple as a shared laugh, a mutual understanding, a social game, an exchange of high-fives, but it means the world to us. Perhaps, then, we have the perfect basis for understanding God’s very desire to relate to us, His children. See My “Runaway” Bunny.

God created us to have a relationship with Him. From the first page of the Bible to the last is documentation of the lengths God went to to have a close relationship with each one of us. Whether you realize it or not, God continually pursues us to know Him and communicate with Him.

I thought it would be interesting to examine each of the five senses (who knew those kindergarten lessons would be so handy) in the context of autism and, more importantly, in the context of God’s ultimate goal of having relationship with us.

Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
Psalms 139:7-10 (NIV)

First up: Sense of Vision – Eye Contact

My “Runaway Bunny”

We Moms know that there is nothing we would not do to initiate and foster our relationships with our children. We try to keep them close. My little Rhema likes to run away into her own world, but I will never stop beckoning, urging her to come and share her world with me. In the same way, we have a God who pursues us and loves us with an unrelenting love.

From Margaret Wise Brown’s The Runaway Bunny

Once there was a little bunny who wanted to run away. So he said to his mother, “I am running away.”

“If you run away,” said his mother, “I will run after you. For you are my little bunny.”

“If you run after me,” said the little bunny, “I will become a fish in a trout stream and I will swim away from you.”

“If you become a fish in a trout stream,” said his mother, “I will become a fisherman and I will fish for you.”

“If you become a fisherman,” said the little bunny, “I will become a rock on the mountain high above you.”

“If you become a rock on the mountain high above me,” said his mother, “I will be a mountain climber, and I will climb to where you are.”

The little bunny said, “I will be a crocus in a hidden garden.”

“If you become a crocus in a hidden garden,” said his mother, “I will be a gardener. And I will find you.”

“If you are a gardener and find me,” said the little bunny, “I will be a bird and fly away from you.”

“If you become a bird and fly away from me,” said his mother, “I will be a tree that you come home to.”

The little bunny said, “I will join the circus and fly away on a flying trapeze.”

“If you go flying on a flying trapeze,” said his mother, “I will be a tightrope walker, and I will walk across the air to you.”

“If you become a tightrope walker and walk across the air,” said the bunny, “I will become a little boy and run into a house.”

“If you become a little boy and run into a house,” said the mother bunny, “I will become your mother and catch you in my arms and hug you.”

“Shucks,” said the bunny, “I might just as well
stay where I am and be your little bunny.”

And so he did.
“Have a carrot,” said the mother bunny.

HAPPY MOTHER’S DAY!

Slip ‘n Slide

I had been looking for a certified ABA therapist to work with Rhema at home. A few weeks ago, a wonderful therapist came over to meet and observe Rhema for a couple hours.

We did not make a very good first impression, I’m afraid.

Rhema did not seem to know what to do with herself and was very sensory-seeking – running around, purposefully falling on the floor, and crashing into the couch cushions. Rhema is on the hyper side, but this was a whole new level, as she was completely unable to focus. At one point I pulled out the mini trampoline in an effort to re-direct some of her energy, and my darling child bent over and took a BITE out of the side of the trampoline. Wow.

We took her outside on the swings and Rhema did much better. However, when it was time to come in, she went into major meltdown mode. Rhema is usually pretty good about transitions, but of course not on this day when I wanted her to be an adorable angel for our new therapist. (I should know better by now.)

Rhema’s screaming escalated to the point where I knew that the only way she would calm down was to put her in her bedroom for a time out. Rhema quickly quieted upstairs, but I left her in her room so that the therapist and I could have a chance to talk. After about 10 minutes, it was time for the therapist to leave so I told her that I would bring Rhema down to say good-bye.

As I went up to Rhema’s room I assured myself that even though the day had not gone so smoothly, it was still salvageable. And I could demonstrate how “in control” I was by bringing her down to say good-bye. (Rhema’s good-bye usually involves me holding her still and waving her hand … if we get eye contact, we’re really doing good!)

What I did not know was that behind her door, the following scene had unfolded. Rhema had removed all of her clothing as well as the blanket and sheet from her bed. She had dragged her mattress onto the floor, and then she peed on her mattress. Her mattress has the plastic material you find on most crib mattresses, and there was a nice, large yellow puddle of urine.
Before I go further, I should explain my 4-year old a bit more. Rhema can find a way to have fun in whatever environment – even with limited resources she has an amazing imagination for all sorts of stunts. Because Rhema’s “fun” can be dangerous, we have removed everything from her room besides her bed and some toys… no dresser or bureau, no table or chairs, nothing that can be scaled. While Rhema understands by now that she should not pee on the bed, I do not know if she fully understands that you just don’t play with the stuff. (See Poop-art).

I opened the door in time to see my naked little girl take a running leap and dive gleefully onto the wet mattress. The big yellow puddle splattered, and when she got up from the mattress, there were lots of little yellow puddles. She cheered. She had created her own Slip ‘N Slide!

Rhema was wet – her hair, her arms, her legs, her stomach. Hope began to cry in the other room – the Slip ‘n Slide fun had awakened her from her nap. For a moment, I was so shocked and mortified that I truly did not know what to do.

Instead of putting Rhema right in the bathtub, Silly Me quickly wrapped her in her blanket and marched her downstairs to say good-bye. Manners first, after all. I did not explain to the therapist what had happened, although I’m sure she deduced something crazy had occurred and that it involved a bodily substance, because Rhema’s hair was wet, she was wrapped in a blanket, and reeked to high heaven!

There. Our freak show was complete. =}

Thankfully, our therapist came back, and now that she has actually begun working with Rhema, things are going better.

Our Abundant Hope

“Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Spirit.” Romans 15:13

My daughter Hope is only 1.5 years old, but she has BIG personality. She is expansive, full of life, rarely shy, always chattering away to family and friends, doggies and cars that pass by. My mother has said that Hope never acts like she’s the new kid on the block, even though she has only been on the earth a short time.  She has the wonderful ability to lighten the mood wherever she goes; unfazed by chaos, she will greet you with a grin so wide that her eyes squeeze shut.  She is the merriment in my life.

Hope’s nature helps me understand what it means to “abound in hope.”  Abound can mean to “overflow” or “exist in great quantities, a surplus.”  When I gave my heart to Christ, He gave me a hope that no matter what happens in my life, I will one day see His glory and live with Him. I know no greater hope.  But I only just realized that this kind of hope is one that spawns even more hope.  I picture hope bursting at the seams.  The idea is to be uncontainable, inundated with hope; saturated with hope and filled up to the point that we are running over with hope.  Where there is progress and good news, there is still hope.  Where there is regression and sorrow, there is still more hope.  Hope is plenteous; it never runs out.

In the face of autism and MS, I want to exude this kind of hope. Because of the hope of Christ, I can joyously anticipate the future.  God is the God of hope.

Poo-poo Art

Warning: All of the blog entries under the category Waste Material are not for the easily queasy. Read at your own risk!

Poo-poo Art is a term that my good friend Carrie came up with to describe the practice of “taking off all of your clothes, going poo-poo, and creating a daily masterpiece in your room.” I used to refer to it as Fingerpainting with Feces, but I like Carrie’s term much better. She helped me actually laugh about it at a time when I was going insane from cleaning up all of the “art work.” 

Some suggestions for anyone whose child is engaging in Poo-poo Art:
1) If he/she have not mastered snaps yet, put your child in onesies or overalls – clothing not easily removed.
2) Sew buttons or fasteners to pants and tops to keep them from coming off.
3) Carrie recommends Lands End footless fleece footie pajamas that you can put on backwards.
4) Put a potty chair in their room – maybe they’ll use it!
5) The strategy that has worked best for me is to make her go potty (BM) before she goes in her room for rest time or bedtime. But this is often easier said than done.
6) When all else fails… duck tape.

Not all of these ideas will work, of course. Our kids are resourceful and ingenious, but take heart, the Poo-poo Art phase will not last forever.

EEGs and Ice-cream

Hi Family and Friends,

Rhema spent another (pre-planned) 2 days in Children’s Hospital Boston this past week for long-term EEG monitoring. Her BEAM (Brain Electrical Analysis Mapping) test in March had indicated that she was having sub-clinical seizures 85 – 100% of the time in the regions of the brain that govern speech and comprehension.

After 24 hrs. of EEG monitoring this week, the seizure activity was at 65% of the time, mainly occurring when she is asleep. The disappointing news is that Rhema does not seem to be responding to her anti-convulsant medication. Now we are trying to decide if we should just take her off the meds altogether. She has an MRI scheduled in 10 days and perhaps that will give us more answers.

In any case, we are reminded of just how limited we are as humans. As we pray and trust the Lord to make Rhema better, we know that He is the only one who knows her body detail by detail (Matthew 10:30). She is His.

A couple picts below. The first one sums up Brandon’s time at the hospital. He was excited to find Spite and Coke in the refrigerator and ice-cream in the nurses’ freezer, so he made himself ice-cream floats. =}

I Uv Ou

This is a journal entry from last year that I wanted to share:

After a long day I tuck her into bed.  I know that Rhema hears sounds in a unique way.  If she repeats a sound or word, it is exactly in the same pitch, rhythm and inflection that she heard it.  In “autism vocabulary”, it’s called scripting, a form of echolalia.  Although she scripts, her pronunciation and articulation are so poor that she often sounds like a deaf person when she speaks – it’s as if she cannot hear her own sounds.  And she does not seem to understand the words her sounds have formed.  Additionally, her voice has that sing-songy timbre characteristic of autism. 

So I said the words “I love you” in a high-pitched voice exactly the way the baby bear in her talking book said it.  Just hoping she would repeat the words.  I tell Rhema I love her over and over – all the time.  But I don’t know if she even knows what it means, if she associates the phrase with a feeling of warmth, affection and specialness I try to convey to her.  I try to make her feel my love when I say the words.  But I don’t know if she gets it. 

Anyway this night I just needed to hear her say the words, even if she were just repeating meaningless sounds.  If I could just hear her attempt the words I would pretend that she was telling me she loved me.  So again and again I said I love you as I readied her for bed.  Waiting for a response.  Waiting.  When the tucking was done, I sighed and went to turn out the light.  She burrowed her head in her sheet and finally repeated in the same baby bear voice,

“I uv ou.” 

My heart soared.  It may be a long time before I ever hear her attempt the words again.  In the future I may doubt it even happened.  But tonight I indulge in the fact that my baby girl loves me and she told me so.