Perserverance

Growing up and even into adulthood, the joke in my family was always about what a wimp I was (or am). This primarily came from my mom, who grew up with a dad who would make them hike for miles or insist that she not show fear in the face of big hairy spiders. I was often ribbed for being too sensitive, whiny about things like cold and bug bites and walking for long periods of time. Dan has often teased me too, particularly when it comes to either putting things together (which I am hopeless at and often give up on quickly) or moving furniture (I'm weak and always find a way to drop it on myself or nearly break something).

In the past I've kind of taken it all in stride, but more recently I've felt kind of frustrated with myself. A part of me knows that behind all of the good-natured teasing, there is a kernel of truth that I want to learn to stick with things, keep at a challenge, not give up when under pressure, push myself a little more. I'm doing some scripture memorization along with others over on Beth Moore's blog and a few weeks ago felt compelled to memorize Hebrews 10:35-36: "So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised."

Fast-forward to the other day, a culmination of frustration with what has been so far an extremely difficult winter for our region. With the latest storm we surpassed something like 50 inches for the month of January, a new record. The snow and ice are so deep in the yard I can't even take the kids to play in it and I'm having trouble seeing beyond snow drifts to get out of our driveway. We've continually raked the snow off our roof, but still ice dams have formed and the water has leaked in three separate places around the house. The last time the leakage got so bad we paid a guy way too much money to break up a bunch of ice high up on our roof: only to have the leaking start again in our upstairs bathroom, worse than ever.

This is where I found myself Thursday morning, with Dan off in Boston on business for the day and the towels shoved up against the window pane where the water was dripping down getting increasingly wet. I MUST do something about this, I thought, and went to get the roof rake.

The roof rake did nothing. It was scraping against a large chunk of ice that I knew was the root of the problem. I thought about the rickety wooden ladder in the garage. I thought about Dan saying how dangerous it was and how I could barely carry it with him holding the other end. Go get it, I ordered myself.

It took probably 15 minutes for me to get the ladder off the wall and drag it to the garage door, then shovel the garage door out more so I could open it wider and get the ladder into the backyard. I eyed the house uneasily. I eyed the ladder. I then gathered up all of my strength and attempted to pick the ladder up completely to prop it against the house.

Crash! The weight of it tipped quickly, scraping the siding a little. The ladder was technically up, but crooked and also not at a steep enough angle to get me anywhere near the roof. I stepped and attempted to straighten things out and found myself falling waist-deep into a snow drift. My cheap Target boots (never again!!) were already leaking.

Persevere, persevere, I kept telling myself. Prove once and for all that you are not a wimp! I was a woman with a mission, while still heeding the voice in the back of my mind that said to not get too foolish, that I didn't want have someone find me frozen in the snow after falling off the ladder and passing out.

I got under the rungs of the ladder and gathered up all of my strength (which isn't saying much). Tears of frustration filled my eyes as again and again I found it hard to manuever. I can do all things through Christ who gives me strength, I kept telling myself, although I'm pretty sure this wasn't the type of thing Paul was referring to in his letter to the Philippians.

Finally I got the ladder up the way I wanted to. I grabbed a hammer and climbed up before I could think about what I was doing. I grabbed the ledge of the window and could just barely reach the edge of the roof, where I began hacking at the ice. Splinters of ice and snow began raining down on me. I kept hacking. The work was exhausting. I didn't dare look down. I did get down once and went to check the bathroom. Still leaking. Back I went up the ladder and hacked more. My hair became soaked. I could barely feel my toes. Finally, I couldn't do it anymore. Resigned, I climbed down the ladder and tossed the hammer carelessly aside. I went back in and climbed the stairs once again to the bathroom.

If my life were a movie or at least some kind of TV drama at that moment I might have realized that yes! I did it! The problem was solved! The ceiling would have stopped dripping; my perserverance would have paid off. Lesson learned.

Instead: Drip. Drip. The ugly brown water stains on the celing were spreading. I called three handymen for help and no one picked up the phone.

After I had cried a few more tears of frustration something dawned on me. I was missing the point of perseverance. Perseverance is not about results. You learn perseverance by not giving up in the absence of any immediate results.

Our most significant times of emotional and spiritual growth are often in those seasons when nothing seems to be happening; changing; improving. Yet still we persist. Perhaps we change strategy or direction, but we don't lose hope.

Oh, by the way, the ceiling suddenly stopped leaking last night. I have no idea why or whether or not it'll start up again. But if it does, I'm ready for it. Stay out of the way of this not-so-whimpy woman, and her hammer. :)

Worms

We were driving to the aquarium in Mystic on Saturday morning, and I had that apprehensive feeling I always have when we're doing something a bit different and I don't know how Ethan's going to react. Would the aquarium be a minor nightmare, as the science museum had been the week before? (Note: Ethan just has no interest in museums, unless there are hands-on exhibits, lots of light and sound, and many buttons). Or would the aquarium be more successful due to his familiarity with the ocean game on the Wii, and my recently introducing him to "Finding Nemo?"

These were the types of things I sat there pondering, while we barrelled down Route 9, listening to the inane kid's station on XM radio. I say inane because literally, the guest host had her son (Ethan's age) on, and he kept whining and crying and talking about poop.

This song came on by some children's group named Dog on Fleas and they were singing about worms. They were singing, in fact, about worms being happy they were worms, and acknowledging there are a lot of animals out there that could probably do more fascinating things, but they, they were worms and they were still special. They made dirt, after all. And that definitely counted for something.

The chorus leaped out at me:

You really gotta love you who you are
You really gotta love where you are
You really gotta love who put you there
Even the most ugly bug needs to know you care

Love who you are. Love where you are. Love who put you there. Is that not what life is truly about?

The next part went:

We've all got our place in this beautiful world,
if you're a crawling ant or a flying squirrel
You might wish you could fly but don't try
You'll end up on the ground and you might die
Just be happy with who you are
Appreciate others and remember

I sat there and listened and breathed in the moment of being with the members of my little, unpredictable, not-so-typical family and our journey with ASD. In that fleeting moment I could see how it feels to just accept what is as is...and still find joy, still live without the ever-present damper on everything; still experience peace.

Just be happy with who you are.
Appreciate others.
And remember...

The Disney Trip That Wasn't

A few days ago for about 24 hours Dan and I entertained the idea of taking the kids to Disney during April vacation. Buoyed by the prospect of extra vacation time and a tax refund, we thought we could make something work.

A year ago we would not have even entertained the idea. A year ago, the sight and sound of those Disney commercials, you know the ones featuring actual video of parents surprising their kids with a Disney trip, the ones with typical little boys and girls jumping up and down, screaming with joy and excitement, made me feel as if my insides were being ripped apart. A year ago, Disney seemed like an impossible dream that would, even if we ever got there and Ethan could handle it, never feel quite right.

Then over the course of the past year we made several discoveries. The first is that Ethan loves rides: any kind of rides, from those at carnivals and amusement parks to the carousel at the mall to the annoying loud rides with flashing lights at Chuck E Cheese. The rides don't seem to overstimulate but rather thrill him.

Next, more recently and with the advent of preschool we learned that Ethan has the capacity to wait in line (at least for a little bit), stay with mom and dad and public without the security of a stroller, hold our hand when necessary and (for the most part) cooperate.

These were two big reasons we were thinking of Disney for a day or so. And so I went online and did my research, as I love to do. I love research when it involves travel. I used to want to be a travel agent. I scoured sites on Disney packages and how to get the best value. I went to the autism sites looking for tips on doing Disney with a child on the spectrum. I went to "Mouse Savers" and "All Ears" to read reviews and comparisons on the most reasonable hotels, the dining plans, the ticket options, and so on.

After doing this for a few hours, the truth became evident: Disney is a HUGE place (that has grown quite a bit since I was last there in 1993). And it's a very expensive place.

But we still could do it, I argued with myself. I'll do more research. We'll find a way to pay for it. We ccould make it work. As I clicked and fretted I felt driven by something unseen, something telling me we HAD to do this.

In the midst of all of this I took the kids to Chuck E. Cheese during a snow day from school that turned sunny, where Anna quickly informed me that she was afraid of the animals on the stage (and their ridiculous "musical show"). She actually ran to the other side of the restaurant to get away from them. The girl is afraid of Santa as well. Hmmm, she's scared of animatronics and people in costume. That might not go over well at Disney, I thought.

Later, Dan and I gave her an impromptu Disney quiz. "Who's Mickey Mouse?" we asked. No answer. "Donald Duck?" She didn't know. "Pluto?" "Goofy?" Apparently my daughter doesn't know a thing about classic Disney characters.

Then I told Dan how much I thought we'd have to pay to "do" Disney the way we wanted to. We looked at Anna, happily engrossed in a Highlights magazine, and Ethan, likewise joyfully pushing bottons on a musical toy.

"Anna, what kind of vacation would you like to take?" I asked her, just kind of throwing the question out there. She shrugged. "I don't know." A big pause. "It doesn't matter. But I do like places with water."

Dan and I looked at each other. I crumpled up my paper with scribbles of hotel costs and meal plans.

The lingo out there in autism world labels kids as on the spectrum, having autism, being autistic, whatever, and kids without autism as "typical." Such a funny word, typical. An improvement on the word "normal," I suppose (as in "you're normal, Anna and your brother is not"). We supposedly have one typical child and one who is not. Except really, neither kid is typical. And more interestingly, what was molding my view of "typical" in this case, anyway? The Disney commercial that told me my kids must go RIGHT NOW to experience the magic, to be thrilled beyond belief?

Last year I watched those commercials wondering if Ethan would ever be a child to jump up and down with excitement about going to Disney World. Now I'm realizing his older-by-three-and-a-half-years-sister wouldn't be the jumping up and down type, either. She could care less about dining with Mickey or being hugged by Cinderella. She'd probably run in the other direction, this "typical" girl of mine.

I hope I don't sound like a Disney-hating curmudgeon here. We will go. And I know the kids will have a blast, in their own way. I can't wait to go, at some point. But I've realized we can't be driven there. Driven by some expectation created in the media about when to go, why, and what will make the ideal experience. We will go when we are ready, when all of us are ready. And we'll have fun in our own Whittemore family kind-of-way. It may involve riding the monorail many times, going on a certain ride over and over, spending an inordinate amount of time in our hotel pool; avoiding costumed characters at all costs. And it will be absolutely wonderful.

Those Tricky Pronouns

Ethan's come a long way with language in the past year. About this time last January I was thrilled to hear him start to put two words together ("garage up!" "light off!"). Now he's a regular chatterbox, in his own way. And while I'd definitely say Ethan has had that language explosion you hear people talk about (it just came about a year later than a typical child), as he learns language, he at times seems to have to work twice as hard. As with so many kids on the autism spectrum, pronouns are his nemesis.

I'm not sure why this is. My guess is that it has something to do with the way he learns language. He's not necessarily absorbing it, he's at times memorizing it. So if he hears me say enough times, "Mommy came to pick you up!" that's the way he will repeat it back to me, which he says every day when I get him at school. "Mommy got you!" he announces with joy.

"Mommy got ME," I'll say back to him, realizing too late that sure enough, the next time he says it to me, he'll say it in exactly the same way. "Mommy got ME!" with the same big emphasis I put on the word. When he needs help on the potty, it's always, "Mommy help you?" Until I remind him...then I can see him work to get the words right. "Mommy help yo...ME!" he'll say with gusto.

His and her are a whole other batch of confusion. It doesn't help that that technically ties into the whole who is a boy/who is a girl thing, which is extremely difficult to explain, since there aren't too many clear-cut ways to differentiate these days that don't involve certain body parts. Ethan is beginning to get the concept but trying to carry it over to pronouns is even more confusing. "Anna got his coat," he told me today, and I had to give the boy credit for even trying. Then of course, in that situation he was actually trying to say, "Anna get YOUR coat."

Poor kid. I never realized how befuddling language can actually be. We throw phrases around and some of them are easy to pick up. A person sneezes, for example, and we say "God bless you." Ethan loves that one. Someone gives us something and we say "thanks." Then there's "you're welcome," which every time I have said to Ethan, he thinks he needs to repeat as well. What IS the point of "you're welcome," anyway? Autism makes one entertain such thoughts.

For the longest time Ethan was prefering to speak in two to three-word phrases. Now he's decided to stretch that to four or five-word sentences, but I've noticed in order to do that, he's got to work out more things in his mind. "Ready go?" he used to ask when it was time to leave the house. Now he's attempting to stretch that into "Ready to go?" but it comes out "Ready FOR go?"

Sometimes I correct; sometimes I just let it go. He's sorting it all out, as all kids do. It may take him longer. He may be learning in a different way. But he's learning.

Snow Day

Like so many in New England this week, we got slammed with a lot of snow on Wednesday: more than I've ever witnessed in my lifetime as a New England resident (last I heard it was somewhere around two feet, in our town). On Wednesday evening as twilight was coming on, I took the kids out in it for a few minutes, knowing full well they were going to have trouble managing.

Anna almost immediately got stuck. Ethan, meanwhile, could barely move at all. The drifts were up to his waist and beyond. We slogged our way over to the swingset. Everything was surreal: the snow mounded up and almost covering the play house; thick evergreen branches bowed to the ground, nearly breaking under the weight of it; the drifts up and almost over our downstairs windows.

I decided it would be fun to fall backwards into the snow. "Watch this!" I yelled to Ethan, and even as I fell backward, I could feel my knees buckling, my hands going back to break the fall. Again I tried, and again I instinctively tried to catch myself. You have 20-something inches of snow on the ground, I told myself. Why are you still afraid of falling back and hurting yourself?

The third time, I knew I had to do it. I took a deep breath and felt the complete, stomach-dropping thrill of falling backward fast, not seeing what was behind or knowing when I was going to hit the ground (or in my case mound, the snow mound). Then -- whump! -- I plunged into the pile of fluffy stuff. Ethan started laughing hysterically. I started laughing, too. Snow had wrapped itself around the sides of my face. My jeans were absolutely soaked. I needed to do it again.

And so as darkness fell and my body began to take on that strange warm glow that comes from actually being too cold, I let myself fall with complete abandon several more times.

Something happens, I think, whena we open up our arms and let go; when we relinquish control. A different kind of joy sets in. It's not the kind of joy you can get standing behind the windows in the safety of home, warm and dry. It's a snow-in-the-mouth-as-you're-laughing-at-the-bottom-of-a-deliciously-soft-but-freezing-snowpile kind of joy.

When I was a kid growing up in Central Mass., we'd be out the snow for hours. We lived on a dead end street that ended with steep paths leading up to a ball field. Winter was like a dream -- the plows would push huge snow piles to the end of the street and we'd walk up the two paths with our sleds and race down, flying over the snow piles and into my grandmother's driveway.

My grandmother would stand at her picture window in the living room, watching us slide with a half-smile and forehead creased with worry, arms folded. Meanwhile, we kids flew. We let the snow soak us. We forgot time.

Somehow most of us grow and end up behind the glass. I wonder why exactly that happens, but snow days remind me to venture onto the other side more often. That's really what this blog is all about, what I feel my life's story has been, these past few years. I'm unclenching those fists and falling backwards without turning to try to see what's behind me. God is not safe, but He's good.

Ordering Our World

I used to love that movie "Groundhog Day." You know, the one where the guy lives the same day over and over, continually waking up to Sonny and Cher singing "I Got You Babe?" There's a part near the end where the central character (played by Bill Murray) is walking down the main street in town, and he's exuding, at least the way I remember, this mixture of both power and fatigue at knowing exactly everything that's going to happen because he's lived the day so many times. "A gust of wind," he prognosticates just before the wind blows. He casts a weary eye over to the same homeless man in the same spot begging for change, he anticipates the nerdy salesman who calls out to him across the street; he steps over the deep puddle of slush that he knows will be there, waiting to trip him up.

I think about that scene now and marvel: "This is the story of life with Ethan!" I say this with a smile. I've mentioned before how Ethan does not seem to have that classic resistance, as with so many with ASD, for changing up his routine. He doesn't tantrum if I drive to school a different way or change up what he has for breakfast. He doesn't insist on the same shirt or socks that have to fit just right. He's just not like that -- but that's not to say he doesn't prefer sameness very much.

Very, very much.

There are many things that give Ethan joy -- music, his parents and extended family, cups of milk, and play areas with tunnels and ball pits, to name a few, but I'd have to add to the list sameness and predictability. When they happen throughout his day, his eyes sparkle, and all seems right with his world.

First thing in the morning, when I get him out of his bedroom: "It's wake up time!" he announces. Then, "Time to take a shower." This is directed at yours truly. Every time I get out of the shower and Ethan sees the towel on my head he announces "Towel hat!" with a big smile. Then he goes to get the hair dryer, and I tell him not yet, in a few minutes, and he keeps asking about the hair dryer. After I'm done using the hair dryer he looks at the buttons on the plug and says, "Press the red button, yes! Press the yellow button!" and fools around with the buttons. "Now go downstairs!" he announces.

Once we get downstairs we must wake Anna up (if this is a school day). His waking up of Anna always involves several big shakes of her shoulders and "Wake up Anna!" Then it's over to the refrigerator. "Want some milk please?" he asks.

The day continues like this. At school we pull up just as the buses have dropped off the kindergarteners and are driving by. "Count buses!" Ethan announces, so we do. The buses are always followed by a mini-van bus. "...and one van," Ethan always adds, after counting the buses. Then the car door shutting. "Ethan close it THIS time!" he announces, and usually I say yes. But later in the day I insist on shutting it. Gotta break the same-ness somewhere along the way.

When we're driving Ethan likes to note the bridges ("There roof bridge, Mamma!" -- he really likes the roofs of bridges) and also always points out the Connecticut River, which we drive over just about every day. When we drive by Anna's school, it's "Anna coming home soon!" At home when we have the radio on for news he needs to announce that the "News is coming mamma," which he knows by the sound effects that precede it. And on and on we go.

There are times I tire at the repetition, like Bill Murray waking up and realizing he is doing the same things once again. But a few things stop me.

One, I think about the tendency of all of us to order our world. At our church people park in the same spots and sit in the same seats, week after week. In Target holidays are carefully charted out, and we love the order of it: Christmas is done and like clockwork everything for Valentine's Day is displayed. Before that holiday even draws to a close the Easter decorations will be there, telling us what to buy, reminding us what's next. TV news is nothing but an endless stream of cliches and cliche stories (think of the reports before each impending snowstorm, with the obligatory shots of people buying bread and milk and the interview with the guy in charge of the plows). We crave order. People with autism just crave it a little more.

And when I'm tempted to be annoyed with Ethan constantly saying the same thing, I think of how often I think the same thing, when we drive by certain places, in particular. Sometimes I wonder if it's a little autism in me. It's been 25 years, for example, since we came upon a horrible car accident on a back road in Massachusetts and every time we drive around that curve I think of it. When we used to go on drives when I was a kid I'd always look for certain things. "There's the house with the balcony that I like! There's the cliff we once climbed to!" Every single time. Kind of like "There roof bridge, Mamma!" if you ask me.

Most of all I end up reminding myself that Ethan is communicating. He's sharing these things, he's calling out his world, setting it all in order the way he likes it, and enjoying the ride. For the most part, my little boy is happy. What mom could ask for more?

Seven Things

So an autism blog I frequent often is doing one of those things where you get tagged, and you're supposed to share seven little-known facts about yourself, and tag other people, and so on. We've all seen this before. I entertained the idea and then stopped myself because I realized I don't exactly have this legion of faithful readers who are just dying to learn more about me. I mean, really. But then a line Jess had written hit me, about the fact that this was something fun to do because it had absolutely nothing to do with autism or her kids or even her husband. Just plain fun. This blog is way too deep and introspective for a good deal of the time, so I thought I'd go for it, even if I'm the only one reading, because hey, maybe I need to be reminded of some of the things that make me, me.

So, here goes:

1. I can play the piano by ear. Not extraordinarily well, mind you, because I didn't formally take lessons and had no piano to practice on as a kid. My point is that I can hear any song and immediately pick out the tune with few mistakes. The process of HOW I am able to do this fascinates me (I even considered writing a paper on it in high school), but I've never been able to figure this out. It just...happens.

2. I am one of those left-handed people who is not completely left-handed. I'm a big mish-mash: I eat with my left hand, cut with my right, throw with my right, bat right-handed, brush my teeth left-handed. I'm apparently confused.

3. I love studying personality styles and one in particular that involves four personality types. I will often find myself determining which type someone is after a chance encounter in say, the grocery store line.

4. I was never a jock in school and really am not very athletic at all, but I love baseball and football, and the Red Sox in particular. I can talk Red Sox with any guy I know and hold my own. I once wrote an article on being a female sports fan for a local newspaper and received my one and only piece of fan mail from another kindred spirit. I believe she may have wanted to date me.

5. I adore On the Border salsa so much that I would drive there just to pick up an order of salsa and chips and have spent time scouring the internet searching for the recipe (no luck yet).

6. I have an affinity for watching really deep, sad, emotional, psychologically pressing movies that no one else wants to see. I often end up viewing them alone in mostly empty theaters and thoroughly enjoying myself.

7. I have this fantasy about driving across the country, seeing every state, mingling with the locals like some sort of modern-day Charles Kurault. Yet whenever we go somewhere different I have to fight the urge not to eat at chain restaurants because I'm intimidated by the thought of every person in some tiny diner staring at me as I walk in the door.

There you have it. That was actually kind of refreshing. And not a mention of the A-word in sight.