Friday, October 23, 2009


Every time I sit down to write something, the words won't come. The thoughts are there, too many, jumbled, almost competing to see who makes it first on the screen. No one wins. I don't write because I feel overwhelmed. Sometimes I feel so overwhelmed that the effort to write outweighs the benefit of just getting it all out of me.

I will write about yesterday. God, it was a gorgeous day. Yesterday was what I'd call a goodbye to both summer and fall. The temperatures were glorious...I'd have to say in the mid-seventies, and the foliage was at its peak. In the night, winds blew more leaves off the trees and I'd say we are heading past peak now. A bunch of people from MOPS went to Foster Farm in South Windsor. I showed up late with Ethan because I wasn't sure if he'd be too interested in the hay ride. So there we were at Foster Farm, in the glorious weather, under the deep blue sky, with a few of the reds and oranges and yellows of maples, and there were several times I just wanted to stop and breathe deep and drink in the beauty of it all. There are so many times I feel as if I just have to stop and at least whisper to God, "thank you."

And there were cows there, and sheep and a turkey and chickens and Ethan was so cute wanting to look at them, and I was so proud of that. Proud and a little frustrated, because he only wanted to look at the animals or crawl through a few tunnels, and I couldn't get him over to where most of the MOPS people were. But then I wondered if I wanted to go over there, because my insides are all over the place.

I feel a sense of "other-ness" sometimes. The feeling grows stronger when I am with people with perfectly healthy children. I love their kids and I don't fault them for complaining about little things (don't we all sometimes?), but when I sit there for too long I start to get this ache. This especially happens when I see kids Ethan's age who are starting to speak in sentences. I get this ache and my head starts to throb a bit and I feel like I'm breathing shallow breaths. I'm barely breathing, and tasting something bitter in my mouth, and what I'm really doing is trying to shrug the weight off. The weight is...not so much the knowing about what is going on with Ethan. It's more like...refusing to accept a burden of shame I lived with, growing up. The burden said, "You're different. You're not good enough. You're not accepted. Your family is weird. People don't like you. You're rejected." And when I close the door on that thought, others try to barge in. Like: "People are thinking your son is weird. He's so behind. Maybe he'll never catch up. He'll be one of "those" kids in one of "those" classrooms. You're the rejected family once again. Why can't you just fit in? Why can't you just be like everyone else?"

When I'm battling this, I lose all energy to try to make small talk. I just want to run somewhere and cry for a little while, until I feel stronger again.

That is how I felt at Foster Farm, and then I thought of Kelly. Kelly and her husband are dealing with something absolutely horrific right now -- their sweet three-month-old daughter has been diagnosed with an extremely rare form of liver cancer. I thought of tiny Jamie in the hospital lying connected to tubes. I thought of the long halls and flourescent lights and doctors in white coats saying words that make no sense. My heart began to hurt again, but this time thinking of how much I'm sure Kelly wished to be outside during this beautiful day, just taking a walk with her two children or doing the simple things that we take for granted when we can no longer do them.

When I thought of Kelly I knew I had to call and try to visit them in the hospital. In the past, this is something I would have talked myself out all sincerity, I'd convince myself that I'd be imposing or that I didn't really know that person all that well to go "bothering" them. But something inside me was more insistent, and so I called, and although we weren't quite able to connect, I will be going and visiting as soon as possible.

At Foster Farm while I blinked back tears I knew that while I may not be able to truly fathom Kelly's situation, I could relate to one thing -- the feeling of having life throw you a curveball, of having normal, everyday life tilted out of focus, and of feeling that while people may try (or sometimes, sadly, not even try), they can't really understand what you're going through.

Ethan is deepening my empathy and helping me soar above my fears. In the midst of pain, I can embrace so much that is precious.

Monday, October 12, 2009

How To Think

Ethan had another speech appointment yesterday, as part of his "interim" speech and OT before the Birth to 3 stuff kicks in. We go over in Glastonbury, at an outpatient office for Connecticut Children's Medical Center. They've got all kinds of offices connected by the same waiting area, so there are kids with broken arms alongside those going for speech or having their heart imaged. I saw a little boy who appeared to be deaf. I look at the kids and their harried parents and think, "People are going through all kinds of things." It's not just me. It's not just anyone.

Then I was reminded of a Philip Yancey book I read not long ago, where he interviewed a famous Christian doctor who has spent his life working with people who have leprosy. Yancey had asked him the typical question, along the lines of why he thinks God would allow such horrifying things to happen to people, in their bodies. The doctor didn't even want to entertain that. Rather he chose to marvel of the complexity of our bodies; the intricacies of our design; about the amazing confluence of factors that have to happen in order to create a life. The greater question, this doctor thought, is how it is that so many of us come into being at all, and without substantial physical defect, when the odds, just approaching it from a scientific sense, against that happening are so great.

I watch the speech therapist watch and work on teaching Ethan and I wonder what she thinks of him. They didn't tell me, in either the speech appointments or the OT evaulation he had, "oh, he's at this level, and we're going to work on getting him to that level." They just start working. So I sit and wonder, "What do you see in him?" "What is his potential?" But I don't want to ask, because if they don't believe in him the way I believe in him, I don't want to hear it.

Every day, sometimes many, many times a day, I have to remind myself of the trouble I borrow when I spend too much time imagining. I imagine what the therapists might be thinking, imagine Ethan in 5 years or 10 or 20, imagine mean exclusions from people that haven't happened...all sorts of things. And since I'm working on a Bible study based around the same topic, all I can think as I look at my brain at the present and past is that I've expended so much energy thinking about things that never happened. I think we truly can handle any thing God hands us, if we are taking it one day, one moment, one breath at a time. Why have I so often borrowed trouble? Thankfully, through a most unexpected way, I have an opportunity to learn with Ethan. He is learning how to communicate, while I relearn how to think.

Friday, October 9, 2009

The Great Leap

I wrote this just before I had Anna, and I thought it fit quite appropriately here, as I start this blog. I titled it "The Great Leap:"

I glanced at the clock again. Forty minutes. I’d been sitting there, flipping through the one dog-eared magazine within my reach and watching every other pregnant woman who entered the office come in and within minutes get called to the back for their appointments.

I was there for a quick 36-week ultrasound, just to make sure the baby was head-down. Thankfully, they don't require you to guzzle gallons of water for an ultrasound this late in the game, or else I would have been really antsy.

Still, this was ridiculous. The office wasn't that crowded. They didn't seem to have fallen behind schedule. I'd already been out of work for an hour and needed to go across the hall for my appointment with the midwife once the ultrasound was done.

Five minutes later, the door to the back creaked open and a pregnant woman with a clipboard called my name. I waddled beside her down the hall to the exam room.

"I'm so sorry you had to wait so long," she said, and I could tell that she meant it. In the exam room stood another pregnant woman, the ultrasound technician, ready to get to work. I crawled up on the table. The cool gel on my belly always startled me a bit. But then the picture appeared, a picture I couldn't make heads or tails of, but that was still so cool, because this was my baby, my first baby, a little girl.

"Ah, there you go. Looks perfect," the technician said. Then, as she continued to look around, said in a low voice, "I'm sorry it took so long to get you in here. We had a problem with the woman before you. We found an abnormality in the baby."

A silence hung around us that said many things. Here stood the two pregnant women, thinking about finding our worst nightmare realized. All thoughts of my long wait, every last remnant of irritation, fled my mind.

"When that happens, we have to call the doctor in," she was saying. "Now the patient is across the hall, meeting with the midwife."

Five minutes later, I was sitting in the same office, waiting to see my midwife, wondering what was going on behind closed doors. A young woman sat beside me, alternately distracted by a rambling toddler and grinning at a baby in an infant carrier.

"How much longer?" the little boy was demanding. "I told you, we have to wait for auntie," the woman tiredly replied.

A couple walked in, the father holding a little boy with deep, dark brown eyes. He scrambled over to the other boy and they began playing together.

I sat watching them, the same two words echoing in my mind. What if?

What if that was you back there? Immediately I was ashamed at my smug sense of relief that it was not. You know that feeling. We all have it but we don't like to talk about it. It's that quiet sense of buoyancy we get when something bad happens to someone else. Oh, we ache for them and we grieve, but there is a secret part of us that feels the most subtle sense of joy at being spared.

Spared this time, that is.

I am not naïve. If anything, I lean on the side of thinking that anything can happen. I instinctively imagine the worst. This may just be part of my nature, or it may be because I've been on the other side. My younger brother is severely autistic. I know what it's like to watch someone grow up different than everyone else; to see the people subconsciously shrink away, not knowing how to relate; to have a family in chaos at times because of one person who can't help the way he is.

But I don't yet know a mother's pain. This is what hits me, as I listen to the high-pitched babbles of the two boys. For many of us, children are almost a given; a natural progression of life; an undoubted miracle. But they are also a risk -- not just to our prior, carefree way of life, but to our hearts.

I worry I'm not strong enough to have mine broken.

The nurse called my name and I headed back to have my weight checked. I heard a midwife in the waiting room, talking to the woman with the two children.

"Why don't you come back here," she said in a kindly voice, "and I'll explain what's happening with your sister..."

I murmured a few prayers for her. Then I prayed for all of us who have taken this quiet leap of courage, because we've chosen this most precious way to open our arms, and let go of all we can't control.

Tuesday, October 6, 2009

How This All Started

When my little guy, Ethan was born, my friend Lyssa gave me a congratulations card that included a Bible verse she had felt led to share. I almost thought it a little peculiar when I read it. The verse was Isaiah 43:1-3:

“But now, this is what the Lord says – he who created you, O Jacob, he who formed you, O Israel. Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead.”

I felt a little unsettled after reading it. Did it mean Ethan was going to be a fearful person? Then there was the note Lyssa had added, about the verse being for not just Ethan, but his parents, too. In the back of my mind, I wondered, “How could she have known?”

At the time, Lyssa didn’t know about the fears that had lurked in dark corners of my mind for years, but especially since becoming pregnant for a second time. She knew only snippets of my childhood, of a life saddled with inferiority and feelings of “not being good enough,” feelings that sprang in part from having a severely autistic younger brother. She didn’t know that I had wondered for years what the risk was for having a child of my own with the condition, and when I imagined the possibility, as with most people, my insides froze. She didn’t know, but God of course had something to say. God wanted to get a message across…a hint of reassurance for the storms ahead, because as the verse says, the storms will come. No matter what the situation – illness, separation, disability, loss – the storms will come.

For me today, I am living a Job-like situation, struggling to remember that Job did nothing wrong to deserve what happened to him, and that in the end, he received more reward than he could have dreamed. But Job feared came upon him.

My greatest fear has come to me. What will I do with it?

Ethan was always a quiet baby. He was always sleepier, less alert, and grumpier than his older sister, who was the first child, the midwife marveled, who had smiled at her at birth. He was all of those things, but not excessively slow. He reached all of his milestones in the normal range. He was late to smile but did smile. He didn’t babble back at me that much, but some.

There were little signs and you have to know it’s not that I was in denial. But it was so hard to figure out reality when I knew how often my fears had colored my perception of life. I am a natural worrier and worst-case scenario type. Throughout Ethan’s first year, I would wake in the night sometimes, paralyzed by fear. What if?? What if?? I know it wasn’t God trying to send me a message. Some would say Satan, tormenting me. Or my own thoughts. Maybe it was a bit of both. This is the part, looking back, that is so hard to understand now. Was there a chance God was gently trying to tell me something, but I was ignoring it and then getting myself all worked up with fear? But I know God’s best is not to live the way I was living. I think many worriers, and especially hypochondriacs, use the fear and worry as a way to protect or buffer themselves from surprise. There’s actually this subconscious idea that floats around: if I fear it, it WON’T happen to me. As I’m typing, a revelation is coming to me. My entire life I’ve been a worrier. My dad is a worrier, my grandmother worried to her grave. I’ve conditioned my life to worry as a way of convincing myself that I’m in control and that my worries can prevent things from happening. Maybe the only way to overcome that, is to worry and worry and still have what I fear happen to me. It sort of breaks the power of that thought process, doesn’t it?? Which would have been better – to worry for a year and a half, losing sleep, feeling tormented, and then get a diagnosis, or to enjoy life, laugh with my kids, get plenty of rest, and then get a diagnosis? The answer is easy.

Yes, so I see now the lies I’ve always told myself. And that helps me see that there is even more meaning to this than I understand right now. This situation with Ethan can transform my life in many ways…and may even transform the way I think, expect, and fear (or choose not to fear). I can’t help but feel grateful for that.

More next time.

Starting Point

Before I go to the beginning, I will start with now. Now is scary if I don’t choose to believe the truth. By truth I mean the ultimate truth, not the truth seen in the world around me, what doctors tell me, what my feelings tell me, but what God says about me, my family, love, and even suffering.

They tell me my little boy has autism. Or at least, a “working diagnosis” of autism. The “working diagnosis” part comes because he didn’t have a full-blown evaluation, because he’s only 22 months old, and they want to see how he progresses after a year of therapy. But in the books, it’s autism.

This happened 10 days ago. If not for my faith, my family, and my friends, I’d probably spend much time crumpled on the floor, trying to fix the hole in my heart, howling from the sheer pain of it, crying tears that offer no solace. Thank God I am not alone. I have done some of those things, because I am human, but I am not alone and I am not without hope.

If I go online I am bombarded with everyone pontificating about what works and doesn’t and why you must choose THIS way or THIS diet because look! My child was cured! And of course my heart aches to find just the right cure because I don’t want to deal with this, I want to just push this away under a rug, just make it dissipate, like smoke. But there is no way to find the right method for my child without some trial and error, and there is no way to know how much it will help until we try.

This is where faith comes in. Faith, which has never been my strong point. One of my favorite verses is in Mark when Jesus says, “Don’t be afraid. Just believe.” I think just choosing that as a favorite verse is an act of faith, because I am far from embracing the awesome simplicity. Don’t fear. Just believe and trust God that everything will be okay. Isn’t that what life really boils down to?

And so we are going to start some therapies and one of the main ones will be “Floortime.” Floortime is what they call a more “naturalistic approach,” which scares me a bit. When I think of naturalistic I envision, for some reason, the people diagnosed with cancer who go for alternative, holistic therapies rather than pumping their bodies full of chemotherapy drugs. To me, the chemo of autism is ABA therapy -- applied behavioral analysis. I call it chemo because it's the strictest, most intensive of the therapies, with the most research backing up the results. I’d love to explain ABA but still can’t quite figure out what it is, other than it having something to do with cause and effect, breaking every desired action into tiny steps, and reinforcing behavior. All I can think of is Pavlov’s dog.

I like the philosophy of Floortime because basically you’re approaching children at their level, especially to start. You are helping them to want to react and engage with you rather than teaching them rote actions. I see it almost like our relationship with God. How much does He treasures our spending time with Him not as a habit or forced obligation but because we genuinely love Him and want to? Not only that, but I can almost compare it to God's relationship to us. He meets us where we're at. He loves us even before we change and become all we can be or should be; before we reach our potential.

In Floortime, you join in with what the child is doing to draw him out. You encourage the child to “open and close circles of communication,” which is the back and forth that comes from regular interaction with others: facial expressions, gesturing, eventually exchanging words and ideas. The Floortime idea is part of a larger model for treating autism spectrum disorders (ASD) developed by Dr. Stanley Greenspan. While there is a wide range on this spectrum, Greenspan's (and much other) research has found that all children with ASD to some extent have trouble with eye contact, imitating gestures, and joint attention (using eye contact and gestures to show and direct the people around you). The premise of Floortime is that very early on, something in the child’s biological makeup caused these interactions to become unpleasant for the child – I believe a lot of it has to do with the child’s sensory intake, how they are perceiving the world around them – and they begin to withdraw because it doesn’t bring the same pleasure as it would to another child. Maybe noises are too loud, lights are too bright. Wires are being crossed at different places in the brain. I am hoping and praying that as we start with Ethan young, we can do some rewiring and help him along.

I know Ethan has potential. Every mother says this, and you know what? It’s true. Even if your child is in a wheelchair, needing constant care, they have potential to change a life. As my mom said recently, they have the potential to bring out God’s unconditional love in all of us. And what greater gift could you receive? But what’s painful is the rest of the world not seeing that potential. We live in a drab physical reality where people stress out if their child gets a B or doesn’t get to play on the soccer team. People, including Christians, aren’t often living in a spiritual state of mind.

So he has the potential that every child has, but I also mean I KNOW he has the potential to learn. And I want so desperately to harness that. I will give an example:
I’ve started to read the Floortime “Bible” to find out ways to start the play therapy with Ethan now. Much of the therapy is family-centered and meant to be practiced anytime, anywhere. So it’s crucial for family to be on board, especially since we learn better when we make emotional connections, and Ethan’s connections, as stunted as they might be, are obviously much greater with his caregivers and sister. In the book they gave some advice about using whatever the child’s interested in to get them to engage, and also to use the imagination (which is another rough area for kids on the autism spectrum).

SO, I decided to use cheerios and Elmo, both of which Ethan loves. I thought I’d show him about fast and slow and up and down using the cheerios on his tray while he was eating. So I started moving them very fast, then very slow across his try, and up and down, saying the words while I did it. He began laughing and looking at me, wanting to do it again. That was yesterday. Today he started picking up the cheerios, or even raisins, and doing the same actions himself, without me reminding him. He remembered, and he was imitating and action he had learned. I was grinning from ear to ear.

As for Elmo, Ethan has an annoying talking Elmo, but I encourage play with it because it’s a toy he’ll bring to me to make it go. We’ll have some back and forth interactions around irritating Elmo. Yesterday I decided to turn Elmo off for awhile so we could play pretend with him. We pushed him around in a toy shopping cart, gave him pretend food, tucked him in for a nap, etc. I offered Elmo a drink, and a few minutes later, Ethan did the same. Today we took out Elmo again and I began asking him if he wanted food. Ethan offered Elmo his cheese and drink, without me modeling first. This was the first time Ethan had accomplished the “Can pretend to feed a doll” milestone listed in those “What to Expect” books. BUT, this was the best part: Ethan had grapes, and I asked if he wanted to give Elmo a grape. So he did, and then I asked if he would give mommy a grape. I opened my mouth for him and he put it in.

Sheer joy! You see, Ethan is 22 months old but has never given me food when I ask. You know that cute sharing kids do when they’re eating goldfish and mom asks, “Can I have one?” and they take their pudgy little fingers and put one in your hand and mouth? Ethan wouldn’t do that, but he made a new connection, carrying it over from the previous day and from Elmo to mom, and I was so proud. These are the types of examples I hope to see more of from Floortime. They keep me motivated and focused, and I am praying for more of them.