Breathe

"Hello anger, my little friend."

“I would not look upon anger as something foreign to me that I have to fight. I have to deal with my anger with care, with love, with tenderness, with nonviolence."

"Breathing in, I calm body and mind. Breathing out, I smile."
---- quotes from Thich Nhat Hanh

We all have our frustrations. Me, I have shoeshopping frustrations (not enough time, not enough sizes, not enough of these in my closet). Among other frustrations.

Jack, he has fine motor frustrations. He's playing with a toy he hasn't seen in some time. It's a toolbox with a shape sorter that makes a satisfying sound when the shape is pushed through the appropriate hole. "Triangle clink!" it announces brightly. "Star donk!" Jack loves sounds so it's a great motivation to get that shape in the hole. His fine motor and visual problems make it difficult, but he was entranced by the challenge and the resulting sound."Circle plonk!"

After about ten minutes of "Square ting!," his muscles started tiring. He had a harder time lining up the shapes to get them in the holes. And the harder it got, the more frustrated he became. Of course, the more frustrated he became, the harder it got. He moved faster. He pushed harder. He bit the shapes. He hit the toolbox.

Mommy's on the other side thinking fast. How can I help him manage the frustration? Maybe breathing, like my favorite Vietnamese Buddhist monk, whose voice can instantly calm and tickle me. But how in the world am I going to explain Thich Nhat Hanh to him? Am I crazy?

Me: I want to show you something.
Jack: No!
Me: It will help you get the shapes in.
Jack: No!
Me: Breathe in, I am a flower. Breathe out, I feel better.

To my surprise, he stops and breathes in and out with me. We do it again. Breathe in with an exaggerated breath through the nose. "I am a flower." Breathe out with an exaggerated breath through the mouth. "I feel better." His breathing slows. His movements slow down. He tries the shapes and ... "Triangle clink!." He smiles.

Me: It works! It helps you get the shapes in! That's called breathing meditation. Daddy does it for yoga.

I'm a big believer in selling an idea.

Ten minutes later and tireder yet, Jack is struggling. The shapes just will not fit in the proper holes. Jack is beginning to lose it. I'm making dinner so I'm not paying attention until ...

Jack, breathing: I am a flower. I feel better. "Circle plonk!" I did it, Mommy!

Wha..hut? What did he just do?!!! He successfully used a meditation technique to help calm himself!! He has now surpassed me in emotional management. Granted, it was just a shape sorter and not a complete meltdown. But still, people! Have I ever once stopped in the heat of the moment to use a meditation technique myself? The only times I've even tried meditation was after a crisis, in the safety of my own bed, and I always fall promptly asleep.

But, wow, if I can give Jack the tools to manage the challenges we all have and the ones he has in spades ... wow. Now that's a magic toolbox.

Jack: Is that breathing medication that Daddy does?

What's Actually in the Netherworld

We're driving back from the cousins. The promised land of sun and water in our rear window, the cows and the haybales move beside us, the plains and pecan groves coming at us.

I hear sniffing in the back seat.

Me: Do you smell something, Jack?
Jack: What is it?
Me: P-ew-eee! That's the paper mill. It is smell-ee!
Jack: Where is it?
Me: We can't see it. We can only smell it.
Jack, in a spooky voice: Is it invisible?

Half Off

Sometimes, for Jack, words lose meaning. He hears them, but can't understand them. It's not that he doesn't understand the word. He just can't process the meaning. He'll fall silent, looking down and to the side. He appears to be thinking or daydreaming. Or he'll whisper to himself the words that he just heard. Many times, he'll repeat the phrase for the next few days ... or weeks. Usually in the same context and to the original speaker. Sometimes it's just a matter of time: he needs an extra fifteen seconds to process. Sometimes it's emotional overload. He can't process the emotion and the meaning of the sound. Or it could be sensory overload: he can only process one thing at a time and this time words just have to go by the wayside.

One Daddy Day, Daddy was trying vainly to convince Jack that he had to eat a snack.
Daddy: Alright, Jack. Let's go eat.
Jack: I never want to eat. I'm never eating a-GAIN.
Daddy: You have to eat or you'll get sad.
Jack, whispering: I will get sad.

Daddy was trying. See, we've been trying to figure out ways to alert Jack to his body. He doesn't get the signals that we do: hunger, thirst, and, uh, meal departure. You know, #1 and #2. If it were up to Jack, he'd never eat. And he would wait until the last possible minute to go to the bathroom. Because he never gets the signals from his body.

At first, I tried a metaphor I thought he'd understand. So I told Jack that if we don't eat, our bodies get sad. That phrase was a spectacular failure. Can you imagine trying to figure that out? For someone who feels disconnected from their body? For someone who is overwhelmed by emotion? I can just imagine the questions that metaphor provoked. If my body gets sad, does it cry? Will I feel sad when my body gets sad? How can I tell when my body gets sad? Will I hear it cry? That metaphor was just asking for trouble. I ditched it, but I forgot to tell Daddy. Oops.

So, for the next, or 100 meals at which Daddy was present:
Jack: What happens when I don't eat, Daddy? Do I get sad?
Me, stepping in: You don't get to taste all the delicious food.
Jack, with evident relief: Daddy, I won't get sad. I just won't taste the food!

And the next time.
Jack: What happens when I don't eat, Daddy? Do I get sad?
Me: When you eat, you get energy. And energy lets you run all around and do flips and jump off the play sofa.
Jack: Run around? Like Quinn and Charlie?
Me: Right. Quinn and Charlie have lots of energy.

After we've finished eating, he shows off his energy by running around the house in one big circle. And I do a little thinking, too. I've read books and blogs from adults with autism who also have difficulty remembering to eat because they fail to feel hunger or to interpret the feeling as hunger. So I'm thinking about how to set up supports for him. But maybe I'm trying to handle the future instead of the present. Get back to the present, mama. You don't have to fix everything right now. And I have the best reminderer ever for staying in the present.

The next meal.
Me: Jack, you need to sit all the way in your chair.
Jack: I keep going up and down and up and down.
Me: Yes, I wonder why?
Jack: Maybe my energy is half off.

They Don't Know

Jack spent six weeks in the NICU. Week 3, we were told he wouldn't make it. Week 4, he made a miraculous recovery. Week 5, he was scheduled for an MRI, a magnetic resonance imaging, of the brain to determine the extent of the damage from his severe loss of blood in utero. The MRI would have to be done at the children's hospital across the street. This would require the nurses unhooking Jack from the hospital's oxygen, nitrous oxide, and monitors, transferring him to a portable isolette, and hooking him up to the ambulance's equipment. He would be taken to the children's hospital in a pediatric ambulance, have the MRI performed, and brought back.

We had been through a harrowing experience. We still weren't sure how long our baby would have to spend in the hospital. I had had an emergency C-section after the doctors could detect only an intermittent heartbeat. I had gotten out of bed at midnight the second day after surgery, the soonest possible minute they would allow, to go see my baby in the NICU. I had seen my newborn, comatose, with wires hooking him to a myriad of machines. I had left the hospital with no baby in my arms. I had returned home to an empty nursery we could not face. I had to be re-hospitalized for high blood pressure. I had listened to doctors deliver the worst possible news to a parent.

But the thought of my baby going in a pediatric ambulance absolutely undid me. I cried every time I thought about it. I berated myself. How could I possibly allow my baby to go off in an ambulance and not want to be with him. It wasn't that. I wanted to be with him. I just couldn't stop crying.

I understand now that it wasn't the pediatric ambulance. The ambulance was merely a symbol. Or maybe the last straw. Like Jack after a day full of noises, movement, light. The zipping noise that shuts him down is just the last straw.

That day, Daddy went with baby Jack in the pediatric ambulance and sat with him during the MRI. And me, I pumped milk ... and cried ... and prayed.

We received the results of the MRI over the phone while we were eating lunch in the hospital cafeteria. The news wasn't good. The brain injury was significant. He would likely have moderate to severe disabilities.

The nurse in the NICU watched us vainly swiping away tears that wouldn't stop. She put her arm around me and said, very softly, "Doctors can't tell you everything. They don't really know how your baby will do. Just remember, they don't know."

I've recalled her words many times over the years. Her name was Marina. She was trying to tell us something very important. They don't know.

But then again, neither did we. We didn't know the future. We didn't know the diagnoses we would receive over the years. We didn't know the sleeplessness, the worry, or the heartache. We didn't know the very different path we would be taking. But more importantly, we didn't know the sheer joy our boy would bring, the gratitude for every little success, the grace we would experience through his challenges, the greatness of his achievements, the incredible friends we would make, and the people he would touch.

We still don't know what the future will hold. It will be hard, sure. But it will certainly be much greater than we can imagine. That's what faith is for me. Knowing it will be hard and charging ahead with optimism and happiness. It's not pollyanna. It's not blinders. It's the knowledge that in life there is great pain and great happiness. Our life has certainly been enriched. Have you met him? He's 36 pounds of bubbling, non-stop zest for life. As many times as it knocks him down, he's getting back up.

Boy, they really didn't know.

Baby Ambulance

We were returning from the supermarket, driving down the road, when we pulled up at a red light. Jack scans the intersection for his favorite cars. An ambulance speeds by, siren wailing. "Ambulance!" he shouts. My eyes follow it down the road and my heart sinks. It's a pediatric ambulance. I'm welling up with tears, but I take a shot at it anyway.

Me: That's an ambulance for babies. They take babies to the hospital when they're sick. You were in a baby ambulance once when you were a baby.
Jack: It's a baby ambulance!

He's more interested in a new name for a vehicle. But I forge on.

Me: When you were born, you were very sick. And you went in a baby ambulance once. They have a little tiny bed inside for babies. And you were in the hospital.

Pause.

Me: I'm going to say a little prayer for that baby. Dear Lord, please help the baby get better and please help his parents, too. Amen.
Jack: What?
Me: I'm saying a prayer for the baby to get better.
Jack, whispering: A prayer.
Me: Yes, to get better, just like you did.

Jack spent six weeks in the NICU, the neonatal intensive care unit. When he was born, he had lost a lot of blood in utero. He had pulmonary hypertension. He weighed only 5 1/2 pounds. He hadn't gained weight in the last two months of my pregnancy. He was born full-term, but after an emergency C-section, it was clear that something had gone wrong. He was a very sick baby. He needed a blood transfusion. He couldn't breathe on his own. His organs were under stress. He needed lots of prayers.

In the NICU, the room was quiet except for the constant beeping of monitors. Some babies had been there for months, born premature and so tiny. Some babies, just days. Seeing our newly born baby with so many wires hooked up to him, on his back, his tiny hands and legs splayed out, eyes closed, and not even the smallest movement was a nightmare.

Some parents came to visit their baby. Some had other children to take care of. Some came after work. All of us parents were praying, praying hard. Even those who had never prayed before. Even those who didn't believe.

One of our nurses was Catholic. She lit candles for us and gave us hugs. One nurse was gay. He washed our baby with the gentlest of hands and encouraged us to talk. One nurse was a realist. She wanted to prepare us with the harshest of predictions.

After three weeks, the doctors told us: they didn't expect our baby to make it. We received the devastating news in the NICU among the other babies, the other nurses. It was Father's Day. We blundered out. We tried to find a private corner. We stumbled into a dark room and cried. And held each other. And prayed.

The next day, our baby made an amazing turnaround. His oxygen saturation was improving. He was starting to take intermittent breaths on his own. He would recover.

But some babies did not. Some parents prayed just as hard as we did. And the next day, the isolette was empty. The funeral was being planned. The nurses fell silent.

It wasn't a failure of faith. It wasn't a failure of God. It wasn't a failure of the parents. It just was. What we said in our prayers was "please help our baby." But what we really needed was "please give us strength to accept what is."

Because some babies don't make it. And others survive. Some children with cerebral palsy must use a wheelchair. And others can walk. Some children with autism are nonverbal. And others can talk. Some children with autism will function independently. And others won't.

It just is. It's not fair. It's not right. It just is. Still that doesn't stop me.

Dear Lord, please help all the babies get better. And give their parents strength.

Going to the Mattresses

When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes.

--- R.E.M., Everybody Hurts



And then there are the consequences.


The week of Halloween something wasn't right. Jack was sick. He had low energy. He wanted to stay in his pajamas. But that was as far as I could get with the clues. My highly verbal 5-year-old has autism. And for us that means he cannot tell me what hurts.


I can ask him all sorts of leading questions. Do you feel sick? Yes or no, depending on what he wants to do. Is it your tummy or your throat? My throat, even when it's not. If I change the question: Is it your throat or your tummy? My tummy. See how that works? He cannot identify what it is, even to himself. When he's sick, he stops processing. Food is tasteless. Words fade in and out without meaning. Faces zoom close and recede. He has no way to identify or communicate what he feels.


I thought maybe it was his cold coming back. Two days later, all-day hiccups emerged and that gave me the final clue: reflux. I started the reflux regimen, but by that time, he had hunkered down. No music class, Mommy. No getting dressed, Mommy. I want to stay in my pj's. All day.


Then he started playing with doors.


And then Halloween arrived. We had been so excited and had all sorts of fun preparing for Halloween. But even good things have a consequence on a child with autism. I am constantly looking to balance the benefits and consequences. Holidays, birthdays, vacations, visitors, presents, travelling ... all the things we think of as fun take a toll on him.


He loves Halloween this year. He's looking forward to it. But will it be too much? Have we modified the plan enough? Will the effects be too detrimental? How can we ever tell?


The consequences of the week and of Halloween appeared quickly. Jack retreated into the world of garage doors. He couldn't process anymore. He was overwhelmed. The world was one giant sensory assault. And he was trying to block it out. So, he ran back and forth making garage door noises. Loud squealing sounds punctuated by kabooms. Loud noises to block out the auditory world. Crossed eyes to block out the visual world. Garage doors over and over. Interrupted only by "I want a minivan."


It hurts to see him like this. It's a kick in the gut. After a tremendous burst of language ability in the last two weeks, it was another down after an up. Always ups and downs. It hurts, not because I fear a loss of ability. But because I know my baby is hurting - defending himself from a world that's suddenly too much.


I tried to calm myself. You are not losing him. Replace that language. I told myself the same thing I'm always preaching: stimming is not the enemy. It is a defense system. It is not the problem. He needs a defense system. Don't try to stop it. Try to help him cope.


Was it a week of reflux? Was it Halloween? Was it the garage door fix on youtube? Was it the time change? Was it a week of staying indoors? It wasn't any one thing. It was everything. And by Sunday, it was all too much.


And so, we going to the mattresses.

I Want Candy

Ain't no finer boy in town
-- Bow Wow Wow, I Want Candy

It's the day after Halloween. The day after little Ghost's big day. It's breakfast, but it's never too early to show Jack the ritual of counting your candy. He smells inside his pumpkin, breathing in the sweet candy smell. I take a whiff. Sweet candy bag, that takes me back to my childhood! Jack takes each piece of candy out of his pumpkin and we look it over, deciding what kind of candy it is.

Me: That's a KitKat. It's kind of like your Chloe breakfast bars. You might like that.
He takes a bite.
Jack: Bleh.
Me: Yeah, you don't like chocolate. That's a Snickers. That's chocolate and nuts. We'll put that over here.
Jack: That one is for Daddy.
Me: Okay, we'll start a Daddy pile.
Jack: What's this one?
Me: That's a Hershey's chocolate bar. Those are M&M's chocolate candies. Those are chocolate kisses. You have a lot of chocolate.
Jack: That's a lollipop. Here's a spot for the lollipop. That's my pile.
Me: That's a Tootsie Roll. It's chocolate, too. Oh, here's a Bit O'Honey! I loved Bit O'Honey when I was a little girl. It's like honey-flavored taffy. We'll put that in your pile.
Jack: What's that?
Me: That's a Reese's peanut butter cup. Daddy likes those.

When we're done, Daddy has a huge pile of chocolate. Jack has three lollipops. He has tasted the SweetTarts, the Runts, the gummy spiders, and the bubblegum and rejected those. He puts all the candy back in his pumpkin. Then sorts it out again. He smells the pumpkin and removes each piece.

The idea of candy is better than the reality.