Wednesday, February 29, 2012

Facing My Giant (Part 1)

If you came here looking for an update on Ethan or autism, I'm sorry to disappoint, but I had to take a little detour. I've been on an interesting journey the last few weeks. It's not one I necessarily would have chosen to write about, but I feel compelled to. Thanks for understanding.

I first learned about not trusting when I was four years old. We were in my cousin’s pool and my grandfather kept urging me to go down the slide. I could not yet swim and was afraid.

“Don’t worry, I’ll catch you,” he promised, again and again. “I swear, I’ll catch you.”

I took a deep breath and raced down the slide and into the water, then under. I waited for the arms to reach and scoop me up. Only they didn’t come. There were a few seconds of panic. Where is he? Why isn’t he picking me up? I kept wondering. I thrashed around wildly, searching for air, my lungs starting to hurt. Finally, I felt someone grab me and push me back up.

My grandfather stood there holding me, laughing. Apparently this had been some kind of test. Pepe was not a particularly cruel or abusive man, but he sometimes did things that were well, unacceptable.

“How could you do that?” my mother was yelling at him.

I was too hurt to be angry. All I could do was stare at him as I cried and choked and caught my breath and ask over and over again, “Why didn’t you catch me?”

He never gave me an answer.


As long as I can remember, there has been Fear. As a young child I fretted about bugs and worried about the bees that swarmed near our front door. I stayed up late at night during our Maine vacations, worrying about a skunk spraying our cabin. After a tornado hit my grandmother’s town I feared thunderstorms for years and would panic when I’d start to see the cumulonimbus clouds start to form in the late afternoon. I got a cloud chart and learned about weather so I could be protected; prepared. I needed to know they were coming so I could…so I could what? I don’t know.

When I was seven I was playing at my grandmother’s one day when she got the call that her nephew and his wife had been killed in a motorcycle accident. After that, when anyone was late coming home, I would wonder. I’d look out the window and think about the horrible things that might have happened.

I spent a lot of time at my grandmother’s house. I loved Nonna. I loved her cooking and the comfort of her hum as she rocked in the kitchen rocking chair and the way she always fussed over me and made me feel special. “You’re so much like her,” everyone always said. I didn’t realize at the time that Nonna was a major worrier, the type who, my dad later told me, was constantly crying and hysterical when he was a child over things that had happened or might happen.

People liked to call me weak and wimpy or fearful when I was a child, but what I didn’t realize then was that I was living out something that swarmed all around me in my genes from both sides of the family. Besides my grandmother’s worrying ways, five other relatives struggled mightily with anxiety and depression – three were diagnosed as bi-polar. Two additional relatives silently dealt with hypochondria specifically for years and years.

I loved to read, and at Nonna’s house as a child, I spent a lot of time reading the collection of Guideposts magazines she kept stashed in a big closet off her dining room. Guideposts is a Christian magazine that runs a lot of stories about how people relied on God through various tragedies and hardships. The thing was, I’d read the stories and never latch on to the happy ending, the fact that yes, these people had horrible things happen but God got them through. What would stick in my mind was the tragedies. For years I read and my mind built up an impressive collection of all the things that might happen to me. I read about houses destroyed by wildfires, plane crashes and bridges collapsing. There was the woman whose daughter was brutally murdered and the mom who watched three of her four children die from some kind of rare disease. Yes, life is scary, I concluded.

My parents had very different personalities than my own. They hated whining and crying and craved adventure and excitement. While I was fearing the storms they piled us all in the car to chase them – the worse storm the better. Rather than ruminating over things internally they wondered aloud about worse-case scenarios, almost embracing the possibilities. When I was 9 or 10 my mom and uncles concocted a “practical joke” that involved pretending that one uncle had jacked up the car to change a tire and had it collapse on him. I remember the screaming, I remember running and feeling panicked and wondering how we could save him, until they burst out laughing.

My dad has always been honest about his own struggles with anxiety. He would tell me about the day he began work at a factory just out of high school, when he saw the bus full of school kids drive by and suddenly felt as if he was going to lose it, realizing he had started a dead-end job in the “real world.” When I was in second grade my dad was suddenly “in the hospital.” I didn’t understand then that he had had some sort of breakdown. We visited and I remembered him drawing pictures of our family as some sort of group counseling activity. I wondered why my dad was in the hospital, coloring. I couldn’t quite grasp what was happening. I didn’t know until much later that my grandfather had had a similar breakdown as well. I didn’t know until the day we drove past the soldier’s home on the highway and my dad told me about the time Pepe spent there when he was a kid, when life had just become too much.

My dad recovered and for awhile we lived with a kind business man from our church who helped him get back on his feet. A few years later, my youngest brother was diagnosed with a severe form of autism. As he hit the toddler years all of us more and more often were on the alert, making sure he wasn’t raiding the refrigerator or trying to race outside naked or eat poison. It was hard to keep your guard down, because you never knew what Andy might do. I learned later there is actually a term for that kind of stress. It’s called hyper vigilance. Our reality had us living always prepared for the worst to happen.

Then again, I was already more than ready for that.

To be continued...

Sunday, February 26, 2012


We've spent a lot of time listening to the kid's station on XM radio in the car lately. This isn't my first choice, as I'm not really the silly-song type, but I've learned to tolerate a lot of songs. Some are actually, I have to begrudgingly admit, really fun. And then there are the songs that reach out and say something to me. Even if they're simple. Even if they're meant for kids.

Hence, I present "Jump Rope." But it's better if you listen to it, so here is the link.

Remember how you used to say
You couldn't wait till tomorrow for a brand new day
no fuss when ya had to ride the bus
You just add a little blush
To paralyze your school crush

Now you're older and the weight is on your shoulder
Make the world a little colder
No more hidin in the old day
Be strong
Don't you give up hope
It will get hard
Life's like a jump rope

Up down
Up down
Up down
Up down yeah
Cause it will get hard
Remember life's like a jump rope

There'll be a bump and there will be a bruise
There'll be alarms and there will be a snooze
There'll be a path that you will have to choose
There'll be a win and there will be a lose and

You gotta hold your head up high and
Watch all the negative go by
Don't ever be ashamed to cry
You go ahead
Cause life's like a jump rope

Up down
Up down
Up down
Up down yeah
It will get hard
Remember life's like a jump rope

I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope

You stomp your feet so hard you make it pound
Raise the bottom to the top
And now we're never coming down

Up down stomp your feet spin around
Clap hands to the rhythm
Then you slip down

Up down
Up down
Up down
Up down yeah
It will get hard
Remember life's like a jump rope

Up down
Up down
Up down
Up down yeah
It will get hard
Cause it will get hard

I can feel my sneakers hit the pavement. I can feel the breeze whizzing over my head as I clutch the plastic handles in my hands. I can get tripped up and still keep going.

I can hear the whisper: Up...Down...Up...Down....

Wednesday, February 22, 2012

A Postcript

Or, I could have titled this Why I Love My Son's Doctor.

I don't mean to rank on all doctors out there, because I've had some good ones, but sometimes I wish they'd understand that it really is relatively easy to win your patient's respect and admiration:

1. Listen.

2. Respond (without condescension).

3. Tell me something that I wouldn't find online, something beyond a pat answer, something that tells me you really are invested in your profession and your patients.

I emailed Dr. Milanese after Ethan's appointment yesterday, to touch on a few things I'd forgotten to mention and ask a couple questions.

The fact that Milanese encourages people to email her still tickles me. Even better is that she nearly always responds within 24 to 48 hours, tops. Then there's the fact that she responds to me as almost a peer or at least a partner rather than a clueless one who needs a finger wagged at me for "overreacting."

Then there is the response I got. To my comment on Ethan's teachers one time saying, "He's probably just going to be one of those kids who aren't 'into' play," she wrote:

It's not okay to me to say that he's just not into play. That's like saying that a non-verbal kid just isn't into speaking!

And then, to my question on how to encourage Ethan to be creative in play, after I stated that I have not yet found the switch to flip on his creativity:

The reality is that you can't be with him in play 100% of the time. So tasks that keep him busy and allow him to learn to follow a pattern or list of activities independently are okay. However, to encourage imagination someone needs to play with him, model the flexibility and introduce new's not a flipping the switch metaphor; more like beach erosion a little at a time, with successive dents made.

Something about that statement brought me a bit of peace. There are times I feel I am looking for some sort of holy grail and just not finding it. But now instead of thinking of searching for the spark that will set Ethan off, I will think of the ocean waves, slowly doing their mysterious work.

This is not something you see overnight, and that is okay. It is something you look back at over a period of time and realize, yes, there is a difference. I couldn't see it before, but now, in time, I do see.

I suppose, really, that is how all of us change.

Tuesday, February 21, 2012

Dr. Milanese, Part 3

Today we had our long-awaited "check-up" with Dr. Milanese, the developmental pediatrician who diagnosed Ethan when he was 22 months old. I say "long-awaited" because the appointment's been on the calendar for about eight months. If you're not proactive you can wait over a year to meet with this woman.

The crazy thing is, we almost didn't make it.

Okay, so the first time we saw Milanese, her office was in the main building at Connecticut Children's Medical Center. Fourteen months later, I vaguely recalled us going somewhere nearby for his reevaluation, but I didn't truly digest where, apparently. When I went to look up the address last night for Dr. Milanese, and read 282 Washington Street, that sounded good to me. Until we got there, and I realized 282 Washington Street was the main hospital, the place I thought she'd moved from.

What followed next was nothing short of a caper. I had valet parking watch my car while running into the hospital to ask where she was. No one could seem to find her in the computer. I was vaguely told a certain building across the street but couldn't figure out where to park. I kept frantically trying to use my cell phone only to find it was disabled "for emergency use only," whatever that meant. I nearly hit several cars while doing crazy u-turns and started losing my temper in a way that was downright embarrassing. Don't you just love when you tell your kids to keep it together and then they are there when you absolutely lose it? Finally we parked on the 6th floor of an incredibly busy parking garage and were sent by a guard in the lobby up to the eight floor. The suite we were told to go to was occupied by hand surgeons (of all things!) and two apologetic women meeting in someone's office told me no, Dr. Milanese wasn't there anymore, but they would call over to tell them we were coming. And then, after all that, we ended up back in the lobby of CCMC, the place where I had started and where they told me they couldn't find her in the computer, and headed up to the 5th floor. Apparently she has two offices. Or something.


As for the appointment itself? Well, there was the good, the frustrating, and the blah. But there was more good than the other two, I suppose, so that's encouraging. Kind of.

The frustrating was Ethan rolling around on the floor and hiding under his chair, stuff he never does. He was a little bit "off" and I can't help but wonder if our half-hour trek around the various Hartford medical buildings had something to do with it. The kid just wanted to be done, but he wasn't horrible.

The good was that Milanese had an opportunity to see nearly everything I'd emailed her about Ethan's current situation in person. He answered her questions (albeit not really looking her in the eye), wrote his name, copied shapes and even drew part of a person. He played with trains for a little bit until he showed his ongoing affinity for smashing them.

The good was hearing the "expert" agree with and confirm everything I'd been thinking: that Ethan can learn but we need to raise the bar, that he might be in danger of being underestimated at school due to his easygoing personality, that he appears sometimes to lack attention span when really it's an imagination issue -- he runs out of ideas. Yes! Yes! Yes! I was inwardly shouting. She'd only watched him for 10 minutes and she knew. That's why this doctor in particular is one of the really good ones.

The good was listening to her on the phone with the director of the speech department, looking for ideas and about getting Ethan into a social skills group, and hearing her refer to Ethan as a kid with really, really, mild, mild autism. Yup, that's where we seem to reside on the spectrum right now, I was thinking, almost with a smile. Somewhere on this very thin stretch of land between autism and PDD-NOS and Asperger's.

The blah was her answer to my question that I knew there'd be no good answer to: how to simultaneously walk Ethan through peer interactions and play while also teaching him to take the initiative and to not just rely on others to facilitate everything.

"That's not so much of a 'how' question as it is a process," she answered. "If there was an answer, I'd give it to you, but I think it's a process."

Maybe that should encourage me. I've been trying to find an answers to truly difficult questions. I don't think she even addressed another one -- how to encourage creativity. Maybe because that's not really the question. I DO encourage creativity. It's just that it isn't "sticking." The light bulb hasn't gone off yet in some areas, but it's not because I'm not doing my part.

Overall, I was so grateful we'd made it in after our mad dash. Next up for Ethan is to start a social skills group and to work with the school to get more intentional about teaching social skills and facilitating interaction.

There are certainly no pat answers, no easy solutions and no quick fixes. But he's making progress. He's moved from moderate-severe autism to very mild autism. And so we keep chugging along...

Thursday, February 16, 2012

The Derby and the Dream

Me and my dad after my big win -- according to the date scribbled on the back, it was April 15, 1979

When I was four years old, I won a fishing derby.

It was a muddy, cloudy New England day, and the water up at what we called "The Pool" was just about as muddy as the soft April ground. The fishing derby was an annual tradition for the town's children. What had once been Gilberville's official swimming spot was stocked with trout. And the children came.

I remember the fishing pole was difficult to manage. The thing
was probably twice my size. I remember my dad's arms, steadying me. We cast the line together; there was no way I could manage on my own. I'm not sure how long I stood there holding the pole before I felt the tug. This was a good, hard, strong tug, not a nibble. "You've got something! You've got something!" my parents were shouting. "Reel it in! Reel it in!"

After a little while I needed help...the resistance was too strong...the thing was huge, at least to me, and we were all laughing and tugging until out of the water splashed a mammoth fish. My dad helped me get it off the hook. Not many minutes went by before I, quite possibly the youngest derby participant, was named the winner. I remember someone from a local newspaper interviewing me, scribbling in pencil in a little notebook.

I had forgotten the fishing derby for years. I can't say I fish very often these days and definitely don't like to eat fish. But several years ago, not long before Ethan got his diagnosis, I dreamed about the fishing derby.

I had been struggling with fear and worry. I have often struggled with fear and worry, and I have often wondered and fought with discouragement that I will always just be this way, no matter how much I trust and try to believe and not be ruled by fear.

In my dream, I was back at the shore with my fishing line. My dad was with me, steadying my arm as we got ready to cast, doing for me what I couldn't do on my own.

You have to cast your care, I heard as a whisper. I don't know if my dad said this in the dream or where it came from. I am here to help you. And wait 'til you see what you'll get in return.

And then I was reeling in that mighty catch. I was laughing again, that carefree, silly laughter of a child, and my dad was right with me, bringing in the reward.

I had to cast in order to reap the treasure. In my dream I felt the joy, the excitement of the unexpected, the idea that I had won. Little me. The victor.

Then, just before I woke up, I heard a Field of Dreams-type whisper: Taste and see that the Lord is good.

My eyes flew open.

I don't have a lot of spiritual dreams. Most of mine are actually a lot of jumbled nonsense, like many dreams. But that night, I knew God was trying to tell me something. That dream awakened long-ago memories of other times with my dad. We'd hike across the fields on Saturday afternoons and build fires in the old Indian caves. We'd roast hot dogs. In the winter the stream that led to"the pool" was frozen and I thrilled at walking on ice under stone brides. We breathlessly crossed the field where the angry bull liked to graze. He never got us. My dad was there. Everything was okay.

There is a secure feeling, a good feeling that comes with just relishing the presence of the Father. We can forget. How easy it is to forget.

I'd like to say that I no longer struggle with anxiety, but that would be incorrect. I am making progress. Some days I make very slow progress. But sometimes when I am at that point of wanting to give up, something awakens my memory back to one of the sweetest dreams I ever had. The one that showed me how to cast my care. The one that reminded me I don't have to do that in my own strength. The one that whispered that God is there and that God is good.

Tuesday, February 14, 2012

The Great Rift

Ethan, Dan and Anna at last year's Autism Speaks Walk

We've started getting materials on this year's Autism Speaks Walk in the mail, and I'm not sure if I want to go.

Almost everyone has heard a little something about the great rift in the autism world, about the division between the vaccines vs. no vaccines camps, the "cure autism" vs. celebrate autism (or neurodiversity) groups, about the arguments and disputes over semantics like high vs. low functioning autism or even using the word "autistic" vs. "has autism." This isn't one big united family by any means, in the way I imagine parents of say, people with Down syndrome.

What bothers me is that I know I'm part of the problem.

Last year we attended our first Autism Speaks Walk in East Hartford. In the back of my head I guess I was thinking the experience would be not unlike the first time I visited Boston Higashi School, the residential school for kids with autism that my brother attended. Within a few minutes of walking through the doors, I was nearly in tears, because wherever I looked there were kids covering their ears or flapping their hands, kids walking with a different kind of gait or talking a little too loudly. I was simultaneously awed and comforted, having never met an autistic person besides my own brother.

At the Autism Speaks Walk last June, I kept looking for the people with autism. I'm not kidding. I'm pretty sure there were thousands of people there. Not one child except my own melted down about having to wait in a long line for the bounce house. I saw a total of one kid, a boy about 12, who was sitting with his legs crossed and hands over his ears in the corner, most likely to escape the noise. I heard another mom in the bathroom talk about her daughter loving to play with soap bubbles in the sink all the time. Other than that, we could have been at a sporting event or a fundraiser for, well, just about anything.

I know, I know, I know. I know how people will gently remind me. Autism is a spectrum. Autism doesn't always have to be seen. A person can still be high-functioning and struggle mightily with social interaction and leading a regular life. I know. And this is why I chide myself even while I write...because here I am contributing to the problem. I think of my brother and his severe disabilities and wonder how anyone could even dare complain because their child is a little socially awkward, all the while knowing someone could be thinking the very same thing about me complaining about Ethan while their child still struggles so mightily. This is not a fair way to fight or live. But it has become part of the story of autism, this disorder that drifts across such a wide and sweeping spectrum.

There has been a lot of talk lately about the recent revisions to the diagnostic guidelines for autism. A lot of people are really upset. A lot of people are frightened that under the new guidelines, their child may no longer qualify for services. I'm going to say something here, and it's a good thing this blog does not have a huge readership because I'd probably be destroyed by the end of the day:

I'm happy about the new guidelines. I think too many people who 25 years ago would have been classified as "quirky" are now qualifying for services under the autism umbrella. And that stretches resources incredibly thin for people like my brother, who did not speak until he was 12 years old, who was not potty trained until he was 7.

Think about Ethan, I remind myself. What if he no longer qualified for services? Then how would you feel?

I think about that, and I've thought about this a lot, and this is what always stays with me. Ethan is learning how to be independent. Ethan could get by if he had to. Yes, I prefer he has services, but if him having services means someone else who desperately needs them does not get what they need from a system that is lacking, then let the other child have them, or have more. I wonder sometimes: are we using more of our resources to help make children just a "little off" become as close to typical as possible, because they have the best chance of getting along in the world, when maybe we should be allocating a greater portion of those resources to help those more severely impaired? What does this say about our values, about how we perceive one's value to society?

I hate how even as I write, I carry out that "us vs. them" mentality. I know we are all in this thing together. Yet I have to admit when I hear certain people referring to their kids' challenges with autism, I still sometimes see just a child in a mainstream class who is socially awkward...because always in the forefront is the autism I knew for my first 34 years -- the biting and raiding food and poop on walls and very, very limited communication.

And so, I don't know if I will go and walk this year. I'm still not quite sure why I was so bothered. Maybe because I was hoping to make a connection. Maybe I have misconceptions about what it takes to make a connection, that one's experiences must be very similar, that one's child has to reside somewhere near the same spot on the spectrum. Maybe I'm expecting too much.

All I know is, right now I'm part of the problem, not part of the solution.

And I don't like that at all.

Friday, February 10, 2012

The Search for Serenity

We went back last week to mall with the little play area, the one that used to have the TV blaring nearby that would distract Ethan and only Ethan. This spot has one of those spinning wheels with balls inside that Ethan has always and forever gravitated towards. Sure enough, as soon as we walked in, he headed for the wheel. Other kids played in the toy boat and crawled through the log tunnel. Spin, spin, spin went Ethan with the wheel. More kids slid down the slide and chased each other. Spin, spin, spin. Then he was Zelda, making sound effects only he understood, pretending to hit the wheel with his sword, frightening the little ones watching him.

And in that moment, despite all the strides that Ethan has made, I felt that familiar frustration. Two-and-a-half years of therapy and getting down on the floor and interacting whenever we can, of encouraging social exchanges and creative play. How is it that some things can change so vastly while other tendencies hold fast? More than two years, and still here we were with the wheel.

Now that Ethan's in school in the afternoon, we can take advantage of some of the playgroups the town offers. In the past, this would have been an impossibility. In the past, just getting him in the room was a challenge. These days Ethan enjoys almost anything with structure. Give him a circle time, a simple craft, a snack, and he's golden. It's the free play that's still a challenge. At the block table, he wants to smash the blocks for the pleasure of the loud noise that will make. Or he will find an electronic baby toy and want to play it over and over and over. By himself. Not all that differently as he used to do when he was 2, in the waiting area where he received his outpatient therapies.

"He initiated play with a peer for the first time!" his teacher wrote in his communication book back in October. Here we are in February, and I asked the other day how things were going for him, socially.

"He's coming along," she answered in that slow measured voice that told me she wasn't lying, but trying to put a positive spin on things. "Especially on the playground." She then told me about the day before, when she had reminded him he had to ask a friend to play. Four months later. He still has to be prompted. My boy who memorized his upper and lowercase letters in a week or two still doesn't know how to ask someone to play. The fact that he even wants to ask is a big thing. Yet often I still see that he's perfectly content being on his own, focused on things rather than people.

I often hear in my head an excerpt from an incredible essay I've referred to before, by a mom with a son who happens to be named Ethan and who has autism, who wondered for the longest time why he would learn and grow and yet still be so, well, autistic.

The answer, I've finally learned, is simple, she wrote. This is the way autism works. There are roadblocks in the brain, mysterious and intractable, and for some children no amount of work or determination is going to change that.

I can see it all laid out, clinically sometimes. Ethan rarely has huge meltdowns. His sensory issues have greatly decreased. But I see the words in my head, stamped on an evaluation page. The "core deficits" (oh, how I hate those words, those cold, harsh, limiting words) are still there. The trouble with relating to others. Lack of imagination. The limited play skills, the repetition.

Sometimes this all feels like a confusing game. There will be the special ed. teacher talking about "cutting him loose" from special ed. at some point and the aide who wondered if Ethan would be attending Anna's private school (meaning some part of her thought he could handle it!) and my mom, her own experience with autism and my brother being so vastly different, talking about how Ethan is basically not much different than a typical kid.

And then there will be Ethan, needing me to tell him how to play with his toys, getting excited about the CBIA health connections theme song on the radio, counting the beads on the toy while other kids are talking in the school hallway.

"He's come so far and he's so close to being a typical kid!" I was saying to Dan the other night.

"No hon, he's not," Dan answered, gently. "He mimics what he sees. He learns to adapt. But he's wired differently than we are."

And with that all I could think of was another line from that same essay, the one titled "Accepting Ethan" --

I’ve also learned that at a certain point fighting the autism begins to feel more like fighting your child.

I think of those words again and again. To me, this is the great question of the autism we live with, the autism in our family's little world. How do I know when I've crossed the line from trying to help my son to trying to change my son? How do I let him be who he is while helping him to learn to adapt to this world he has no choice but to adapt to, at least in some ways?

How many therapies are enough, or too much? How do I let him be just who he is, even if that means opening him up to ridicule as he gets older? And how to I reconcile my beliefs about what God can or can't do for Ethan with what is?

Why does it feel like, no matter what I do, I'm giving up on something?

Maybe it's because I have to.

I have no pat answers, no specific solutions to these questions laid out before me. All I know is that above all, first and foremost, I just have to love. That's what we are all called to do in this life. Love, and remember the words of this timeless prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Wednesday, February 8, 2012

To Give and To Receive

I was sitting in church several years ago when a line from the sermon jumped out a me with such intensity I kept hearing it echo in my head throughout the day and week that followed.

It's not serving if it's convenient.

I'd been doing a lot of soul-searching. I'd been trying to figure out why I seemed to be an especially selfish person, who, to be honest, wasn't big on reaching beyond myself and thinking of others' needs all that often.

When I'd heard that line spoken, I had to admit that so many times, when I did offer people my little crumb of help or support, it was on my terms, when I could fit it into my schedule.

I didn't feel condemned, but rather as if my eyes had been opened just a little wider. Over the coming weeks and months as I thought more about what it really means to serve people, I realized that another big reason I had trouble serving people is that I didn't grow up seeing my parents serve people.

There was a reason for this. They were often busy serving the needs of my brother.

There are things that happen, growing up in a small town or with a group of friends or in a tight-knit church. Or, things that usually happen. Maybe you watch your friend's kids one morning and another day your mom-friend watches yours. You offer someone a ride when they need it. Extend or accept an impromptu dinner invitation after church. There's this give and take, and this is one way you help people and get to know people.

Except that if you have a child with severe special needs, serving others may be more than inconvenient -- more like next to impossible.

How could my mom watch someone else's kids when she had to use most of her energy to make sure my brother wasn't, say, drinking Drano or raiding our refrigerator?

How could we have had people over for dinner and conversation when one of my parents would have to be focused like a hawk on keeping Andy out of the food or from melting down or making unintelligible noise throughout the meal and day?

How could we do much at all that required a change in routine or schedule, extra effort, anything besides the norm we'd all adapted to? Add that to a different, less-educated-about-autism era, where many people just didn't get the real challenges our family faced, and it's easy to see why we kept to ourselves.

The problem is, I began to adapt those same habits as I grew and ventured out on my own. Over time, the ways of self-preservation had worked themselves in me like well-worn paths.

The other day a friend really needed to talk. I'd been planning to take Ethan to library story time but we scrapped that and stayed home so my friend could come over. Even as I was switching a few things on our schedule around, I couldn't help but think, There are other moms of kids with autism who could not do this. Their child would freak at having the schedule changed. Their child (not just a toddler child, but possibly much older) would not occupy themselves at home and allow mom to just "chat." In no way does this mean those moms are not good friends. In fact, those moms might just need to connect with a friend more than anyone.

A number of years ago, at a church I used to attend, a quiet woman shared a short teaching at our women's group. I'd never heard her teach before and never did again but what she said that night has always stayed with me. She talked about the Last Supper, and Jesus washing the disciples' feet. And the question she presented was not, will we be servants, like Jesus, but rather, do we feel we are worthy to have Jesus wash our feet? Are we too full of shame, have we closed ourselves off from receiving what He has for us?

Where am I going with this? I guess what I'm trying to say is that yes, we should always be willing to serve, even if it's in the smallest of ways. But each of us go through seasons, and there are times when we are specifically called to give and times we need to rest and receive.

I pray the special needs parents (and all moms of young kiddos, really) will realize it's okay to receive. It's hard to give when your tank is empty, and when you are giving and giving to a child who has needs above and beyond the norm, it's particularly easy to drain empty rather quickly.

I pray that others would have compassion on those with a special needs situation, if they have to do a little more giving than taking in the friendship, at least for a season. I pray that they would have a heart to see the often unspoken needs and try to fill them.

And I pray those of us who find themselves with an opportunity to give would do so...that we would be still, open our eyes, and look for needs to fill.

To receive...both have immense rewards, and both are incredibly important. Ignoring either can be detrimental. And so I ask:

What season are you in?

Sunday, February 5, 2012

Play, Autism-Style

2010, age 2, up in his bedroom, before the start of the day:
I know what I'm hearing before I see it. Whump. Whump. Whump. It's the drawers in Ethan's bureau. He's climbed in the cubby door on the bottom right and has found a way to open the top drawer from the inside, again and again and again. Then, another sound, a creaking sound. The opening and closing of the closet door, over and over.

2011, age 3, up in his bedroom, before the start of the day:
Elmo is talking. Then Thomas is talking. Then the Baby Tad is talking. Ethan has decided he is utterly fascinated with every electronic toy in his bedroom. He plays each one, intensely focused, for months. He knows the answer to every question. He can play them with his eyes shut. He wants to play with nothing else...until the one day he decides he's done; effectively burned out. And from that day forward, he doesn't pick up any of them again for months and months.

2012, age 4, up in his bedroom, before the start of the day:
I hear a peculiar knocking noise. I hear the timer beeping. This time, I don't quite know what he's up to. I find him at the window, watching cars drive by and the lights on the neighbor's house. "When the timer beeps," Ethan announces, "Mr. John will turn off his lights." He sees a car approaching. "Oh! Here comes a car!" He begins waving his arms, making whooshing sound affects and lightly hitting at the window. "I got it! I was fighting that car!" he tells me. He looks back to the lights, and then the timer. "Nine minutes, and Mr. John will turn off the lights."

My boy is not going to push a car around and make vroom noises (at least, that won't hold his attention for very long). He's not going to set up his dinosaurs in an elaborate prehistoric land or try to build a rocket out of Lego models (at least not yet).

In some ways, my boy is most assuredly different. God, I love him.

Friday, February 3, 2012


We were in the school cafeteria the other evening, munching on pizza and veggies while talking with other parents of kids with special needs. I was impressed with the school for arranging the event. They even had paraprofessionals there to help the kiddos with dinner and crafts so the parents could talk.

Ethan doesn't see some of these kids as often anymore. He doesn't spend as much time with the special ed. teacher either, which is probably why he announced "I want to eat pizza with Mrs. Vincenti too!" as soon as we walked in. Mrs. V. is, of course, his current pre-K teacher.

After we ate, Dianne, the special ed. teacher, and I were talking while Dan chatted with one of the other dads. She started up with something she'd alluded to a few months ago.

"I don't know," she said, shaking her head and smiling. "I don't know what we're going to do about Ethan. I may have to cut him loose soon."

What does that mean? I wanted to ask her.

"This is off the record," she said, "but have you ever considered putting him into a preschool next year several days a week with typical kids and just seeing what happens?"

I honestly did not know what to say to that. Why is she saying this? I wondered, my heart pounding in a good kind of way.

"Look at him go," she said, watching Ethan and another boy. "Look at him play. It's just amazing."

Ethan and the other boy had invented a fun game the involved dropping a half-deflated beach ball and laughing hysterically at the sound it made when it hit the floor. I could have watched and listened all night.

Then she was off talking with other parents, and I was left to think. I wondered how my mind could be swirling with so many emotions at once --

Joy that she would think Ethan capable of even more than he is doing right now, when he's already come so far.

Confusion about just what she was saying. What does it mean to "turn him loose?" Doesn't he still need services, like speech and OT? How could he go anywhere else and lose those services?

with myself, for so often seeing his deficits, for focusing on his lack of real play and trouble with social interactions, when others are marveling at his strengths.

, that nagging feeling once again because who are we that Ethan should come so far when other kids far older than him still struggle so much?

And hope. I can't forget hope. With the teacher's words I felt it swirl around me, the possibility of all the things I'd thought we might have to cross off the list...that list you don't know you have in your head about what your child might do or be, until someone tells you your child has a disability.

I thought about a scene in a book I've read many times, one of the Chronicles of Narnia, The Magician's Nephew. Throughout the story a young boy, Digory, wants nothing more than to find something to make his deathly sick mother well. And finally as the story draws to a close the great lion, Aslan, gives him an apple off a tree from another world, an apple he thinks or feels or hopes can save his mother if he can just feed it to her. And once he slices it up and she eats and falls into a deep, peaceful sleep:

For the rest of the day, whenever he looked at the things about him, and saw how ordinary and unmagical they were, he hardly dared to hope, but when he remembered the face of Aslan he did hope.

Sometimes I think, what do I want more than anything? For Ethan to be completely "cured?" For his sake I suppose yes, but I must remember:

Does Ethan being "healed" have anything to do with our love for him? Or his value here on this earth?
Does Ethan being healed or not being healed have anything to do with God's love for him?

There is always, always, always a reason to hope. I just need to remember what (or more importantly why I'm hoping). It's not just about what Ethan can do or can't do, or what the school says, or whether he someday accomplishes what we might call "The American Dream."

My hope can't be in these things. My hope has to be anchored in Him. It's okay to float sometimes. I just have to know what I'm tethered to. And so right now I am soaring just a little bit. And then walking on to whatever this road has for us next.

“Most people, if they had really learned to look into their own hearts, would know that they do want, and want acutely, something that cannot be had in this world. There are all sorts of things in this world that offer to give it to you, but they never quite keep their promise.

“At present we are on the outside… the wrong side of the door. We discern the freshness and purity of morning, but they do not make us fresh and pure. We cannot mingle with the pleasures we see. But all the pages of the New Testament are rustling with the rumor that it will not always be so. Someday, God willing, we shall get “in”… We will put on glory… that greater glory of which Nature is only the first sketch. - C.S. Lewis