Monthly Archives: February 2015

early intervention

On a sunny day in October in my 28th year, I walked, sweating, into the early intervention building with a giant tub of Jack’s therapy toys under one arm, and two-year-old Jack screaming and flailing in my other arm. I called to four-year-old Henry to stay close to me in the parking lot. We were doing this because our life was in shambles. We didn’t know what to do with Jack. Normal life had bid us goodbye. 

There was no receptionist at the desk when we walked in. I didn’t know where to find the sibling child care for Henry. I didn’t know where to find the structured playgroup for Jack in the labyrinthine hallways. No one seemed to be working there for me to ask. I didn’t know how much longer I could hold Jack, who was moaning and trying to slide out of my arms. If I set him down, he would run away. My arms burned and I held him tighter.

“We are here because we are desperate,” I wanted to say loudly to anyone who would listen. “Help, please.”

I abandoned the giant therapy box on a chair and found someone who knew where to find the sibling care room. I left Henry in an unfamiliar class, where he instantly found a box of toys and went to work, playing. If I didn’t have a Jack, I wouldn’t appreciate how amazing this was. 

Screaming Jack and I resumed our search for the structured playgroup, which had become, in my mind, a last beacon of hope. When we found it, and I retrieved the giant therapy box and lugged it inside with Jack, there was no one there. The room was empty and dark.

I sat down on the floor mats of the motor therapy room. Jack wandered around moaning. A young woman popped in to tell me that the class had been cancelled today because the instructors were both sick. They had left a message on my home phone after I had already left to make the forty-minute drive. She was sorry. She apologized. She said we could stay and play on the slides and in the ball pit as long as we wanted. She looked at Jack fussing and at my desolate expression and asked, “Bad day?”

“They’re all pretty much like this,” I said.

Flailing Jack, the giant box, Henry, and I made our way back outside. I loaded everyone and everything into the car. As we drove, something that I had pressed down and refused to acknowledge before came loose inside me, with a ripping sensation. The optimism, the competence, the hope I had displayed for months was gone. 

This was reality now. It was jagged and it hurt.

“What is that sound you’re making, mom? I don’t know what it is,” Henry said.  Hoarse, gulping sobs rasped from me. 

“It’s okay, buddy. I’m just sad.” 

“I don’t like that sound, mom. It’s scary.”

*more racking, ragged sobs*

“I know, honey.” *gasp* “It’s okay.”

***

We spent a year and a half of our lives with early intervention. It became a lighthouse when I was floundering in the deep. It didn’t pull me onto dry land, but it did illuminate the landscape. 

They didn’t directly teach me how to handle life with a disabled child. No one sat me down and forced me to come to terms with my new, harder life. They didn’t engage me in psychotherapy sessions to draw out my anger, or my fear, or my feelings of helplessness. Nobody made me journal about the challenges. 

The growth was indirect. It was an environment of resources, a jet plane chartered to take me from our old life to the New World—a land of disabilities. EI was the flight crew.

The classes, the play groups, the parent training—they all helped me learn the lingo of the special needs world. The onslaught of appointments and classes caused me to begin the slow reordering of the priorities in my life. 

A pretty house, play dates and zoo outings, caring about clothes, hosting friends for dinner: these things were once important to me, and now suddenly they weren’t. Now all I wanted was for my son to be able to communicate his basic needs: hunger, pain, happiness, frustration. My perspective began to shift from “this nightmare has got to get better soon,” to “this is the new normal; adjust your expectations.” 

And then the best part happened. I met Stephanie, Mandi, Geri, Yolanda, Janet, and Rachel—other moms. They were young and beautiful. They were struggling like I was with a child who they couldn’t really figure out. They were new, like me, to the world of extreme behaviors, aggression, limited communication, sensory integration demands, and so, so many tantrums. 

We got together outside of the structured play class for the first time in December at my home. Before that night, parenting had become cold and lonely. Now, I had friends experiencing the same kind of emotional whiplash. I had stumbled from a dark cave into a brilliant cavern of light, water, and glittering gemstones. They understood. They were living it too. 

***

I also met Crystal. 

She led the structured play class and taught parent classes about Floortime therapy, sensory integration, and creating an environment of positive reinforcement. Crystal had lost her first son to a rare metabolic disorder, and had just learned that her younger son had the same disorder. It would ultimately take his life, too.

As Jack wailed and tried to squirm away all through every class, Crystal sat by me, patiently trying ideas to help Jack cope. 

Her own life was rife with grief and uncertainty, but she exuded a sense of calm.

She taught me how to see things from Jack’s perspective. She encouraged flexibility. Month after month, she worked with Jack and encouraged me.

Taking Jack to structure class never got easier. When he aged out of early intervention and transitioned to preschool, I hugged Crystal.

“You get it,” I said. “You know.”

We looked directly into each other’s eyes. Hers were sad and wise and saw me with compassion.

She nodded, “I do know.”

A Green Ribbon

I sort of feel like I am daily spinning a giant emotions wheel not unlike the one with dollar amounts on The Price is Right. A hard pull and I watch it cycle past, waiting to see on which wedge the flapping tab will land.

Optimism. Frustration. Breathless survival. Irritation. Detached calm. Fury. Satisfaction. So many options.

Today it landed on longing.

I examined my mental state and reached the conclusion that an undercurrent of longing pulls at me.

Though I am not even really aware that I am thinking this way, it’s nevertheless there. Today, I named the feeling, and realized that it runs deep.

What do I long for?

I long for my childhood.

For my grandparents.

For camping trips to Leigh Lake and picking huckleberries in Strawberry Canyon.

For Bijou and Theo, Sally and Olive—our departed dogs.

I long to swim in the ocean.

I long for summer.

I long for calm.

For simplicity.

For a taste of normalcy in my complex household.

For fewer Code Browns and virtually no lakes of urine.

I long to help my Jack be less frenetic, more peaceable and content.

I long for change.

At times I catch hold of a sense of pure loveliness in the life I am living. But it slips from my grasp when I grapple, two-handed, with my boys and their needs.

I want to rewrite longing.

Instead of a deep, strong river pulling at me from below, I’ll think of a smooth ribbon, vibrant green, that runs through the places of my childhood, to heaven where people I love are and back down, into the ordered routines of my family’s days, and on to tomorrow.

It’s glossy and constant, my ribbon of longing, tying me to the good things of the past and spooling out into what comes next.

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Fridays at Costco are NOT Tuesdays with Morrie

I sent off an article today. That hasn’t happened in quite some time, mainly because I haven’t had the heart to write something “newsy.” I can’t make myself care about making writing feel neutral for the sake of professionalism. Nope. Don’t care.

So I wrote about lessons I’ve learned from autism and I made it funny. At least it’s funny to me. The last time I sent in an article, they edited out the funny bits. If they do the same thing this time, there won’t be anything left (she said, snorting).

Anyway, it felt like victory because I wrote something sassy about a real topic and I sent it in not caring if it gets rejected. Boo yah!

I also scampered to Costco with Baby, where 11,000 hungry people with giant shopping carts plugged up the aisles while snarfing up food samples.

A few observations:

1. Food sample tables at Costco on Fridays at noon with tiny microwave ovens cranking out hot little snacks make me nauseous with the smells. I don’t want to eat those smells. I want to flee from them. I’m not pregnant, but those dumb little tables wafting seafood/Indian/Mexican/other scents remind me of pregnancy, and the old green churning feeling returns. Excuse me while I vomit in your little trash can meant for the paper cups holding the samples.

2. A group of young moms and their children were shopping together. Like they all went to the warehouse store together and were trolling the aisles in a big herd, also clogging things up, while they gave each other a running commentary of what groceries they were going to buy. I couldn’t figure it out. I maneuvered past them lickety-split.

3. The woman who checks the receipts at the door always asks me if I really meant to buy two cartons of eggs, two boxes of milk (two gallons per box), two tubs of hummus, and two giant boxes containing 54 mini chip bags. Yes indeed, I did. Why is she always so incredulous and skeptical? It’s Costco. They sell things in bulk. I’m feeding six people. And I don’t feel that I should have to explain myself to anyone. But if I really wanted to hold up the line, I guess I could give her a big, lengthy backstory about Jack and autism and morbidly picky eaters and the pitfalls of feeding someone who is nonverbal with extreme developmental delay. Giant boxes of 54 mini chip bags are known as Jack food modules.

Or I can just write it down, leaving the sample eaters, and the pack of codependent grocery shopping moms, and the line of people waiting to have their receipts ignominiously examined as they leave the store to their own business.

I heart writing.

Exceptional Care

Dutch and I met with Jacky’s support coordinator yesterday to make some changes to his care plan. I learned that because of the nature of his disabilities and the intensity of his behaviors, Jack requires what is coded for billing purposes as exceptional care.

It was the most validating thing I’ve heard in ages.

No kidding he needs exceptional care! Deep down I’ve known this forever, but hearing Shannon define it so simply and clearly was oddly liberating.

Jack requires exceptional care. Amen, and amen. Also, duh.

This is why our lives are a vortex of wild and crazy. We are trying to do normal things like work and raise other children and be social and give within our community, while the entire family spins and whips around Jack’s exceptional needs.

It makes so much sense! This is why things are always precarious, why anything added to our lives is like tying a sandbag to the ankle of a person dangling from a cliff.

I feel less unhinged. The state of our household has been unequivocally defined as beyond typical by accepted standards in the field. Even among other people with disabilities, our Jacky’s needs fall outside the norm.

We are outliers. Knowing this and having the correct options because of this distinction feels like the patter of rain, dropping a blessing on our house.

When Driving Was Simple

Do you ever look back at a previous time in your life and wonder why you didn’t rejoice every day about how great things were then as compared to now?

I keep doing this.

I will find myself thinking how just a few months ago, we could drive in the car without a ten-year-old funnel cloud whirling destruction on everyone. We were able to drive places without implementing extreme safety measures.

Why wasn’t I thanking my lucky stars every time I left the house with all my children? Why didn’t I realize how good we had it?

I’m not the type who looks at the past with an inflated sense of nostalgia. I’m crabby and contrary enough that I tend to remember exactly how I felt when things were difficult. The past generally makes me grateful for the present. Is it strange that I remember the hard parts best and that I’m glad it’s now instead of then?

Yet now I understand the bliss that was driving my children around without a bouncer in the backseat controlling Jack.

I have started to wonder what parts of today I am under-appreciating.

Solstice Writing Retreat

Back when I was in graduate school, I met Terry Tempest Williams, which thrilled me as I knew her from her books to be a most brilliant writer. I told her I was a graduate student, studying writing.

She put down her pen and the book she was signing, looked directly at me and said solemnly, “It takes great courage to write.”

Of course I agreed with her, because Terry Tempest Williams yo. But I really didn’t know what she meant until many years later when I started writing in earnest.

Now I know, it absolutely takes great courage to write. It requires vulnerability. It means saying things you believe in firmly, but which other people disagree with just as firmly. It means creating something, which is work, no matter how you slice it.

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I rallied my courage a year and a half after beginning my blog and attended the Solstice Writing Retreat in lovely Midway, Utah. It was a turning point for me to a) call myself a writer and b) meet other writers.

I left my high-maintenance children with uncle extraordinaire, Joe, and spent three amazing days belly laughing, learning, and meeting my writing heroes Ann and Louise, who were far more hilarious and wonderful in person than I ever imagined them. I sang a few bars of “The Wilkie, Wilkinson Center” to John Bytheway himself, and I ate ice cream at Dean Hughes’ home. I mean seriously, people. Aside from the Hawaiian islands, I had found paradise.

Even better, I left with ideas and friendships that gave me the courage and confidence to write for a bigger audience.

Solstice is happening in April this year, with an early bird registration discount before February 28, 2015. It’s going to be the shiz and I want all writers everywhere to come and experience it.

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Mountain Goat

I’ve been dreaming about mountains. Literal peaks of really tall, rock-strewn mountain ranges.

I’m either driving on roads cut as switchbacks into the sheer sides of a mountain, or hiking on steep dirt trails. Twice, I’ve dreamed that I can’t find my way back to the road to get home, and my children will be getting off the bus soon at home. Then, there’s panic.

It would be really easy to superimpose my dream consciousness on my real life and say something like, “The mountains represent the challenges we are currently facing with Jack.” Maybe that’s where the mountains of my dream landscape are originating, but I’m not entirely sure.

In these dreams, while the mountains are high and the trails are narrow and steep, they feel the way mountains have always felt to me—fresh and big and wholesome, maybe a little bit wild and scary, and completely not everyday life.

They are there in the periphery of my normal life, since I live surrounded by mountains. But when I actually spend time in them, mountains are a good escape.

In one of my dreams, I walked along a trail that meandered, criss-crossing a creek in a narrow valley deeply set between surrounding peaks. It was morning—misty and cool, and the sunlight backlit the sage and yarrow bordering the trail. I was alone.

Another dream featured my children running away from me on a vast slope of the foothills where we walked. They scattered and I couldn’t catch up to them. I called to them and the wind whipped my voice away. I felt slow.

Once I dreamed that when backpacking I spent the night in the waiting room of an orthodontist’s office set  high in the mountains. Because camping out at the Swiss chalet orthodontist is a perfectly normal thing to do in a dream.

And then last week, I dreamed I was driving to meet my family at a cabin in the mountains. As I drove, I looked at groups of cabins set in the valley below the road, and at the ones sprinkled on the hillsides. They were all huge. Billionaire magazine photo shoot, huge. I passed enormous log, shake, and stone vacation homes with four-car garages and private boat docks on the lake.

I noticed them in the way that I notice what starlets on the red carpet are wearing: they are nice to look at and vaguely interesting, but are you kidding me? And also, No.

So I drove my van along in my dream state, looking at cabins fit for the Kennedys, wondering where my family was. They couldn’t be waiting for me in this place. We are decidedly not the Kennedys.

I woke up feeling in my subconscious that just around the bend in the dirt road, I would find a squatty, 1960’s era well-worn cabin with a screened-in porch and campy, old-school cabin decor. I surfaced from the dream like a bubble from a lake, feeling that this is where my family would be: Jack dragging a shop vac through the dirt, Charlie scaling hillsides with his Nerf gun, Henry and Truman shooting hoops. And Dutch holding it all together.

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Scapegoats and Witches

I have this internal discussion running in my head. Sometimes I forget to keep it quiet and “talking to myself” becomes “dramatic monologue.”

I hesitate to even bring up the topic that is swirling in my mind because it’s surrounded by controversy, and I totally have zero interest in engaging in the heated discussion about Autism and What Causes It.

But the brain keeps stewing, so here goes.

With the recent outbreak of measles, there is a renewed focus on vaccines as a best practice for public health and personal well-being. As with any current-day discussion of vaccinations, the topic of autism comes up. Ever since the discredited Dr. Wakefield of England published a bogus study linking autism to the MMR vaccine, many parents have become fearful of vaccines.

I have my personal opinions about vaccines–their safety, efficacy, and importance. But I’m not going to get into that. People who avoid vaccines or who slow their child’s vaccination schedule don’t care what I have to say about the subject. They believe fervently one way, and I am not going to change anyone’s mind.

Ultimately, people can make their own choices. So be it. If I smoked, I would totally smoke a peace pipe with pro-vax and anti-vax alike. We could discuss baby names and preschoolers, and just be moms together. Because parenting.

The part about this discussion that gets under my skin and makes me talk to myself like a crazy lady is the assumption that optional environmental factors must be triggering autism and therefore it’s a mom’s fault if her child is on the spectrum.

Never mind genetics or the fact that nothing has yet been proven. Let’s blame moms for getting an epidural or receiving Pitocin during labor, or taking prenatal vitamins and following their pediatrician’s advice to have their child vaccinated. It’s easier to point at something—anything—and say, “That caused it!” It feels definitive, tidy.

Guys, this is what I walk around my house saying out loud to nobody but myself.

Back in the eighteenth century (incidentally, before vaccines when diseases killed indiscriminately), this behavior could have implicated me as a witch. “Burn her! She’s consorting with the devil when she mumbles about crazy magical ‘shots’ that prevent diseases! And what is this mystical ‘autism’ of which she speaks? She’s a witch!”

Times change, but the urge to assign a scapegoat may be timeless.

Just as many a parent doesn’t care about my personal stance on vaccinating, I do not want to hear speculation about how I have unwittingly brought a developmental disorder upon my child. It’s counterproductive and frankly, inappropriate.

I get that when we don’t have definitive answers to big dilemmas like autism, it’s tempting to latch on to unproven culprits. We can’t cure autism, but we can manipulate our kids’ diets and reject vaccines, and feel like we are effecting real change.

Maybe it gives us some semblance of control. But it’s an illusion. Raising a child with special needs teaches parents many lessons, none of which is more powerfully understood than this: we are not in control. I have personally learned that life generally doesn’t follow the blueprinted trajectory we envision in our youth because the unexpected unfolds, changing our course and offering us something different.

A better approach in my experience is to ask autism parents what life with their child is like. Get to know their child and be a friend. Listen. Offer support. Special needs parents are already keenly aware that there is much we do not yet know about the disorders that our children live with every day. Friendship and concern are far more effective than speculation.

My sister asked me once why I believe there is such a high occurrence of autism now. I’ll tell you what I told her then.

I know from personal experience that children with autism are valiant souls. Perhaps God is sending them to us en masse because they have something useful to offer the world. And maybe the rest of us have something we can learn from them, too.

 

Normal Things

Charlie wailed before getting on the bus this morning, “Baby gets to stay home all day with you!” He was anxious about his class trip to the bowling alley. Bowling is scary when it’s the unknown.

I think Charlie’s dream day would be French toast and sausage for breakfast, nowhere to be, unlimited Xbox, GoGurts for lunch, all the neighborhood kids showing up to play in the afternoon, and altruistically passing out candy to everyone in sight. Charlie is a benevolent six-year-old. He wants to give everything away.

Truman’s dream day would include Grandma, train sets, and hummus. He’s three, so most days are dreamy.

My dream day could take many forms. Napping on the beach. Hiking in some Northern European country. Walking through a museum or a historic neighborhood at my own pace. Reading under my down comforter. Lunch at Copper Onion and dessert somewhere, eating something lemony and buttery with lots of whipped cream. Going to a writing workshop. Seeing a friend and spilling our lives to each other. Taking a walk at the cabin.

The last few days have felt pretty perfect. Making beds, folding laundry, cooking food, cleaning up, walking to the park, writing, buying groceries, reading, talking to the thirteen-year-old, squeezing the six-year-old, watching the three-year-old play trains, patting the bed next to me and sitting with Jack who is calm and sweet and happy again.

It’s awfully nice to do normal things and appreciate that they are lovely and boring.

Describe your perfect day, please. I want to know.

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Special Ed

Parent Teacher Conferences were this week for my two boys with IEP’s, so of course I wrote down a smattering of the esoteric conversations only a special needs parent experiences with teachers.

“I’m pretty sure Jack thinks I’m trying to starve him.” (Miss N)

“Charlie has figured out that the first two kids in the recess line have to hold the doors for the rest of the class. He is very scrappy and is almost always third in line.” (Miss A)

“We have a ‘no running in the classroom rule,’ so he power walks everywhere. The other kids power walk with him in a sort of restrained race.” (Miss A)

“Since we made him wear the footed jammies once, he doesn’t try to take off his clothes anymore in class.” (Miss N)

“I assigned each student a flower on the circle time rug. There was too much jostling and power walking for the spots in front.” (Miss A)

“He isn’t attacking anymore, except for the occasional angry squeeze or pinch.” (Miss N)

“We got the doubles flash cards you sent home, but his brother shredded them.” (Me)

“Let’s talk about next year’s placement. I want him to stay here. Please say the autism units aren’t moving to yet another school.” (Me)

“Jack and another student require a partition between them in the classroom.” (Miss N)

“He loved cooking time yesterday, but was offended that we wanted him to try Jello.” (Miss N)

“He is making progress with the eight steps of shoe tying in OT.” (Miss A)

“I’ll send more snacks.” (Me)

“I’m sorry your first week of teaching was when my child started violently rampaging.” (Me)

“Charlie is blossoming in your class.” (Me)

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