Friday, October 26, 2012

The Weather Watcher

I write about Ethan, and sometimes I write about my brother.

Now it's time to give my other brother a turn -- on his birthday, no less.

There is something you should know about our family: in addition to autism and spectrum-like traits, musical ability and affinity for good Italian food, there's something else that's been passed down for generations: a love of weather.

One of my first murky memories is of my dad calling home on his lunch hour so my mom could hold up the phone to the TV for him to hear Don Kent (a legendary Boston weatherman) share the latest on the impending Blizzard of '78. My dad and my mom's brothers were all huge weather nuts. They went out to Boston to meet some of the weather guys. A fun family gathering involved pouring over weather maps. My uncle had a mini weather observatory set up in the back of the house. That same uncle, incidentally, went on to obtain a PhD in meteorology.

Nate followed in their footsteps. Where there were storms, there was my dad, my uncles, my brothers. My dad fondly recalls chasing a hurricane out on the Cape as a young adult and the excitement of "water lapping under his motel room door." One uncle nearly had a tree fall on his car while driving through a tornado that hit my grandmother's town. Nate also narrowly missed a tree while chasing the Springfield tornado last year.

When the Weather Channel came to our home via cable in the mid-eighties, let's just say it was a very happy time at our house. For years I had the Local Forecast elevator tunes running through my head. 

My brother is four years younger than me. I can't say we're extremely close, I think because of the age difference and the obvious fact that, you know, he's not a sister. It's a different type of relationship, but I think we both know we love each other deeply.

One year back when I was in college and Nate was in high school I thought I had the perfect gift. No, it wasn't Christmas or his birthday; it was January and a snowstorm was about to pound our area. The Weather Channel happened to be broadcasting live from Blandford, a town about a half-hour away. Not only was it The Weather Channel, it was Jim Cantore, Nate's favorite weather guy, there doing live shots not far down the road. He kept mentioning people who had stopped by to say "hi."

"Nate! Get in the car! We're finding Jim Cantore!" I yelled. We squeezed into my Ford Escort and skidded onto the near-empty roads. Any sane (non weather-obsessed) person would not have been out there. I gripped the steering wheel with my entire being, willing the car not to slide off the road. We somehow made it to Blandford. We looked high and looked low for the familiar backdrop we had seen on TV. Jim Cantore had appeared to be at some sort of gas station. Blandford is not a very big town. Very quickly we realized he just was not there. I hated to give up. I hated to turn around. My eyes literally were filling with tears as we both had to admit defeat. Later, we realized (how could I have missed this?!) that Cantore was actually reporting from a rest area on the Mass Turnpike, which did technically run through Blanford briefly.

My brother is just as good as any local forecaster out there. He stays up late during storms to view the latest computer models and observe weather conditions. He can speak the weather lingo. He knows as much as someone who went to college for meteorology, only he didn't, because he didn't think he was strong enough in math.

Today he works for my dad's small business, but my brother dreams. Isn't there a piece of that in all of us? Often we make the responsible or practical choice. Often family or other duties are involved. That doesn't mean we aren't happy. But it also it doesn't mean that we aren't still dreaming.

My brother was blessed to find a wonderful wife, Christina. Even with three small kids, she encourages him -- find a way to go to school, study weather, it's your passion! The jury is still out on that one. But in the meantime, my sister-in-law got Nate the best gift ever: admission this weekend to a conference in the Boston area on Southern New England weather. Topics of discussion include 2011's Hurricane Irene, the Springfield tornado, and the October snowstorm. Weather experts from all over will be coming to talk weather: just as a monster, unprecedented storm barrels toward the East Coast.

I don't wish death, damage, or destruction on anyone. But I can't help but think of all of this and smile just a little. These people, these professed "weather geeks" don't want to see tragedy. They just really, really, enjoy a good storm. There isn't a better place I can think for my brother to be on Saturday, the day after his birthday.

Don't stop dreaming, Nate.

Sunday, October 21, 2012

What Jan Brady Didn't Teach Me

I have to admit: growing up, I was a major Brady Bunch fan.

Weekday afternoons on Channel 56, Boston. Every afternoon. For years. To say I have most episodes close to memorized wouldn't be too much of an exaggeration.

Any Brady Bunch affictionado knows the story of Jan and her lost locket. A "secret admirer" (later revealed to be Alice the Housekeeper, who empathized with Jan being the middle child) sends Jan a beautiful locket, which Jan proceeds to lose one evening.  To find it, the Brady's come up with a solution: replicate down to the minute everything that occurred that fateful evening the following night, to jog Jan's memory of exactly what happened. And so they all put on their jammies and eat the same bedtime snacks and make sure they brush their teeth in the same fashion (Bobby even going to bed with toothpaste in his mouth for some crazy reason) and voila! Jan starts screaming, remembering she leaned out the window to look at the stars. In typical Brady fashion, the locket is of course hanging outside of the window, stuck in the trellis vines.

I've tried the Brady Bunch technique with my own misplaced objects, and the funny thing is, it does actually work sometimes. But here's what doesn't: there is no way to perfectly replicate a situation that's already happened. I know this. We've been living it out in the church basement for the last month.

I've written about this being the first year Ethan is participating in our church's kids' choir for the Christmas show. They are practicing two songs, to be sung up on the stage under bright lights, for five performances (I'd be happy if Ethan did one). I'd be even more grateful if we made it through the show without him dabbling in his new-found nervous habit of digging his hands in his pants a la Al Bundy.

We wouldn't be doing this if it weren't for the fact that Ethan loves music and loves to sing. This is not something we would force him to do. But he seems to enjoy the experience in his own way, and doesn't mind practicing, so here we are.

The thing is, this is new for him. Ethan doesn't care for new. Most kids on the spectrum don't. Ask him to try something he's never attempted, eat something different, watch a show he doesn't know, his first response will be tepid at best, out-right refusal at worst. I've found that when he's decided to dabble into something new, one of the worst things is for there to be too much new, and for the new thing to be too challenging. So, for example, if he's going to try fishing in Maine for the first time, better to quickly hand him the pole all ready to go and make sure there's a fish right there to catch. Starting from scratch, attempting to explain too many steps, making him wait too long, changing the whole situation up every few minutes, is going to turn him off quickly.

SO, with this rehearsal thing, what I was hoping for is a hefty dose of sameness in the midst of Ethan trying something different. Alas, it was not to be.

Rehearsals started in the church basement with a CD. The first week went fine. This was what Ethan was expecting. He'd watched Anna in the past. He took it all in and I'm sure made mental notes that This Is What Practicing Is Like.

The second week, "Miss M." was on vacation so "Miss D." led the choir, and they only practiced one of the songs. Ethan didn't get why Miss M. was gone and why we only practiced one song, but he went along.

The third week, we were away in Maine. I hated to get out of the groove with practicing, but hey, visiting family comes first.

The fourth week, Ethan wanted to know why Miss M. was back. More than that, he wanted to know why a man was playing the guitar accompanying them rather than the kids singing along to a CD. The fact they had all been told several times that in the real show they would sing with a band not a CD had long since floated way over Ethan's head. The entire practice, Ethan couldn't take his eyes off the man and the guitar. He forgot all about singing. To top it off, anytime he did start to sing, this sweet girl behind him, who happens to have Down syndrome, started belting out the song in an ambitious but incredibly off-key way. I could tell this drove him crazy. He kept turning to stare at her, too. When Miss M. came around with the microphone to see how kids did singing on their own, he was completely oblivious that the mic was in front of him. This boy who knows just about all of the words by heart and can belt them out with gusto could only think about the girl out of tune and the man with the guitar.

This week, week five, we were prepared. We had a little talk about keeping our eyes on the teacher when practicing singing. Ethan assured us he would do that. So, we got downstairs and -- no, they couldn't have! -- they changed the room the kids were practicing in. AND Miss D. was back instead of Miss M., who had to care for an ailing relative. All of Ethan's promises about watching the teacher went out the window when he had to process a different room, different teacher, a door left wide open with parents hanging around outside, and icing on the cake, placement next to the girl out of tune once again.

I had to smile, watching him try to remember to watch the teacher or at least me, mouthing the words dramatically in the back, across from him. I had to offer silent thanks that while Ethan was distracted, he wasn't completely shutting down. He was coping as best he could.

I guess it's no surprise to anyone that life rarely flows like a Brady Bunch episode. Despite our best efforts, there isn't a way to truly replicate an experience, week after week or day after day. There will always be a changed room or sick teacher. There will always be something.

For those people with ASD who live for routine, predictability, and sameness, this is especially unfortunate. But I suppose the sooner they learn, the better -- and they won't learn learn unless we expose them, to the best of our ability and of course without cruelty, to situations that challenge them and take them out of their comfort zone.

Week six of practice is six days away. I can only imagine what surprise will be waiting for us this time around (Miss M. is back! We're switching back to the orginal room!). The only thing we're successfully replicating is unpredictability. Perhaps that's not such a bad thing.

Thursday, October 18, 2012

The Little Things

Awhile back after a string of depressingly rainy days inside with the kiddos, I'd had enough. I told them we were going on a "rain walk." They got out umbrellas and old clothes and away we went. We walked up by the school and splashed in puddles. We ran across the fields, mouths open, singing like we were in The Sound of Music. We got back home soggy, muddy, and a little chilled. The whole thing took less than a half hour, cost nothing, and the kids are still talking about it.

The other morning I looked out at our kind of busy street and really saw it for a second. I saw the brilliance of orange and yellow leaves...not just the construction sign indicating another day of the guys digging and blocking traffic. I saw the way the wind took the leaves for a moment and they did a brilliant dance before landing beneath the cars that always back up almost to our house during rush hour. I knew we needed to do something a little different, so after dropping off Anna at school, Ethan and I got on our sweatshirts.

"We're going on a fall walk!" I announced, heating up water in the tea kettle. Five minutes later, we had cups of cocoa and were sitting on the front steps before heading out. Ethan's lips turned chocolate-mustached. The wind was blowing. Whatever mild weather we'd had the day before was decidedly gone. Down the sidewalk, Ethan kept trying to walk backwards so he could see the stoplight turn from red to green. The guys were working again, blocking the streets with cones. The backhoe was beeping.

As we kicked at leaves I watched the battle play out in front of me...that fight to see the beauty vs. the mundane, the contrast between seeing and seeing.

I could look at the truck or I could look at the leaves turned a perfect hue of gold and red.

I could look at all that brings me down and awakens the blahs or I could breathe thanks for the littlest things.
Whenever I am stunned out of a negative stupor by something as simple as the feeling of a warm mug on chilled hands, I'm reminded again how important these simple joys really are. I am sobered by not only how much I may be missing when I'm having an off day...but how much I may be missing giving.

Maybe the library clerk needed someone to smile and ask how they were doing.

Maybe a friend needed just a few words of comfort on a rough day.

Maybe I needed to stop rushing and hold the door for someone who is convinced no one is polite anymore.

Maybe the obnoxious driver needed me to let them cut in front of me without incident, just because we all need mercy sometimes.

I will always, always remember this:

Back when I was in eighth grade, I had a pretty friend. I was not so much so, with my big perm and lack of make-up skills and overall nerdliness. I guess it was not so much that I was a bookworm (nothing wrong with that!) but also that I tended to be oversensitive and insecure, the type that cried easily and turned people off sometimes.

One night this friend and I were helping set up for an event to take place at our church the next day -- some sort of carnival our youth group was holding to raise money for something. I remember painting signs. I remember the woman helping us: Denise, an attractive, outgoing black woman who had a big smile and often volunteered for church events. She drove us home that night, and while nothing in particular had set me off that evening, I remember feeling as I always did. Slightly inadequate; goofy. My friend was going to go to modeling school. My friend chatted more easily with adults. Denise pulled up to the apartment complex where my friend and I both lived, and my friend climbed out first. Just as I was leaving, Denise leaned over for just a moment and said in a voice meant for only me to hear, these four little words: "You are so beautiful."

I tried to hide tears in the darkness as I walked up to my front door. At first I wondered what she had seen in me. Then I realized she must have seen something. And for years after that, as I stumbled through adolesence and mean kids at school and tears in the bathroom over cruel, heartless words by unthinking classmates, I always had those words to remember.

The little things do matter.

This is what I have to remember, on those days I only want to drown in me and all of my mental stuff.

And, all these years later:

Thank you, Denise.

Ethan found quite possibly the ugliest leaf on
our walk - but it was pretty to him.

Monday, October 15, 2012


We were at the MOPS meeting (Mothers of Preschoolers, for those unfamiliar) at church last week, and I'd agreed to help set up. That meant that Ethan had to go to childcare a bit early. When we reached the room (a familiar place -- he's just spent the last two years in there on Sundays before graduating up to an older Sunday school class) something about the situation made him tense up. Maybe it was the fact that almost no one was there or the teenage helpers were different. I'm not quite sure, but the next thing I knew, Ethan was heading over to the dollhouse. I knew why -- and I was right. He was heading over to the garage doors. He needed a stress reliever.

Here's the thing about Ethan. He doesn't have a lot of behavior issues. Often people will say, "Oh, I didn't notice anything was 'up' with him." The two areas he tends to distinguish himself as a bit different are with his challenges in coming up with play ideas and with his reactions to being in a new environment. Some kids run. Others tantrum. Ethan slyly heads towards plugs and cords (he calls them pluggers, which always makes me smile), outlets, computer switches, fans, and shades.

This both frustrates and fascinates me.

I should add a disclaimer here. The obession is not as bad as it once was. Back a few years ago when we attempted a quick getaway in a hotel, there was non-stop running from the lights to the toilet flusher to the blinds. We've learned that if we tell him he needs to be done now, in most cases he can force himself after a few minutes to stop. He also no longer makes a mad dash towards switches and buttons. He's more sneaky now. The one thing that's always gotten me, as I watch him crawl on the floor behind a chair to trace the path of a cord, or find a small light that he can unplug and bring to another room to plug in, is why? What is he thinking? What's driving him? What need is this behavior fulfilling?

When Ethan first joined the Sunday school room with the dollhouse and its garage doors, he was a little over two. He did not want to be there. We'd held him back with the under two kids a little longer to give him time, but he still wasn't ready. He didn't know what to do with this loud room full of unpredictable children. And so every week he would make a beeline over to the dollhouse, lie on the floor (or sometimes just sit) and push the garage doors. Up and down. Up, and down. The whole time, he'd be making the quiet humming of a garage door opening. If I tried to talk to him, he usually didn't want to talk. He just wanted to stare at those doors. If you'd been watching, you wouldn't have thought he was thinking much of anything. Over time, he's taught me to know better.

So there we were on Friday. The situation was different and Ethan was back to the doors. Only this time, for some reason I could see the gears turning in his head. I could see him actually look around the room and see some familiar reference points missing. He asked, "Why are not many kids here?" Then his eyes scanned the room. They settled on the garage door. As his favorite-therapist-in-the-world used to say, he "telegraphed" what he was going to do next. Instead of darting I could almost see him making the decision that he needed to go to them.

It reminds me of a night in the kitchen and deciding to have that extra piece of pizza, because I'm stressed about something and darn, and it just tastes good.

I walked over to him. I patted him on the back, leaned over, and whispered in his ear.

"Ethan, do you need the doors because you're stressed and a little scared about being here?"

"Yes," he told me, starting to push them up.

I looked around. One other boy was there, a buddy Ethan had just been munching on donuts with, who has his own little quirks. He was laying out a line of thin wooden blocks like Dominoes.

"Your friend is over there playing. Would you like to ask if he wants to play?"

Ethan looked at the doors for another second. Then he looked over at the other boy and the blocks, and stood up.

"Hey, would you like to play with me?" Of course not loud enough, and from across the room. I nudged him a little. We walked over. "Would you like to play?" he asked again.

"Look what I'm doing? Watch this Ethan!" his friend said, and knocked the blocks down. And with that, in that moment, the doors were left behind.

The goal here is not to stamp all of Ethan's habits out of him. Some he still very much needs. Some he still clings to for familiarity and comfort, like the nibbling on my nails that I still haven't beat. Yesterday I caught him at my parents' house, plug in hand. There were too many people. The house was too loud. He'd spent all weekend with people. It was just too much.

The goal is not to eradicate all that he is but to push him forward, bit by bit.

The goal, as it is with all of us, if we're really to live lives worth living, is to nudge him just a bit more out of his comfort zone; to encourage him to do things he may not have thought he was capable of doing.

To me, the best part of that moment at the church was not Ethan giving up a "stimming" activity to go play. It was that he could express to me or at least confirm what he was feeling. "Behaviors mean something," all of Ethan's really good therapists have said to me.

Being able to see that in real see the way his mind works and understand that he had to work to make a decision part of him really didn't want to make...

That was progress.

Friday, October 12, 2012

What I'd Like to Say at the IEP Meeting

So, Ethan has his annual IEP meeting next week. For those who don't know, IEP stands for Individualized Educational Program, is mandatory for any child in special education, and is specificially designed to meet each child's unique needs. The plan includes goals and objectives for not just academics but also, when applicable, daily living skills as well as any additional services the child receives, such as speech, occupational, or physical therapy. IEP's can be modified at any time but are updated at least annually.

These meetings aren't the horror shows I'd feared, after reading stories online -- probably because the staff at Ethan's school are pretty reasonable and seem to genuinely care about the children they are educating. But I wouldn't call them pleasant. I'd call them a parent-teacher conference multiplied by about ten. The principal is there. Every one (if you are fortunate) of your child's teachers and therapists are there. People shuffle around documents and tell you where your child is doing well and where he falls behind. Sometimes the discussion is rather "clinical" and full of acronyms. Sometimes they forget you're there and you're sitting at your end of the table, feeling rather outnumbered and a bit overwhelmed, trying to remember advice you read somewhere about how to best advocate for your child.

I've found in these meetings, it's kind of like labor and childbirth. You can have a plan. You can be really confident about the plan. And then you can walk in the room and something happens you didn't expect, something that throws you and maybe gets your emotions kind of out of whack, and the plan is out the window.

There are always things I want to say at these meetings that I don't end up saying, so I've decided to say them here. Call it a fun little outlet before the stress of actually walking into that room next week. So, here I go with the 6 things I'd really like to most express to the people who care for my son:

1. Thank you. Thank you for what you do, day in and day out. It can't be easy. I have a deep admiration for anyone who dedicates their life to educating those with special needs (and really for anyone who would long to spend their working day with preschoolers!). I can see you care for my child. I can see you are motivated and passionate about your job. That makes such a difference for us parents. I am grateful for you. That being said, I have a few requests and questions. I guess this is one I can say and do say. Maybe this is one I really must not forget to say. 

2. Can we please not rush through this meeting? Even if you feel rushed and there really isn't time, can we conduct the meeting in a way that doesn't feel as rushed? Can people not look at their watches or keep talking about how they have to duck out in a minute? Can you, Principal L., slow down when you speak? I love that you want to be efficient. I know we have a lot to discuss. But I can't help but feel as if I'm on some sort of assembly line of IEP meetings, that I need to be pushed out the door so the next parent can come in and be rushed for the parent after that. That kind of atomsphere doesn't make me feel that you see my child as much of an individual.

3. Along those lines, this time around can we not try to decide my child's services for the school year, the summer, and beginning of the following year all in one meeting? Again, I appreciate efficiency and like the idea of streamlining meetings. But -- my son is going to kindergarten next year. This is big, and marks the beginning of his "official" education. I have no idea where he's going to be months and months from now. We are going to need to sit down again. We are going to need to see where my child is then. A year is a long time, especially when you are four turning five.

4. About your summer program, even though we're just passed summer. Please tell me why you don't offer services appropriate for my child? My son has not attended summer school ever because apparently the program is only individualized instruction, and that's not what Ethan needs most. But Ethan does have needs. So do many, many of children with autism in the program at Oliver Ellsworth. His teachers have admitted to me that most of the kids are fine in the academics but like Ethan need lots and lots of practice socially. My hunch is the schools who do offer these services are the ones with official "peer model" programs. Speaking of that:

5. Why does our town not have an official peer model preschool program? What determines which towns do and which do not? Why is it that my friend's son one town over attends school and summer school with a class that has a majority of typical peers while mine does not? This may seem like a minor issue, but it's not. Ethan's greatest need is to learn how to navigate socially, and he needs lots of practice and many, many opportunities. He's not in the ABA classroom, yet his interactions are still occuring primarily with other children with special needs and in particular, those with social skills issues. Times are changing. The diagnosis of autism appears to be changing. These 1 in 88 kids diagnosed are not primarily on the severe side of the spectrum, but they do have needs, and those needs are not being met. We are using an old model and old numbers. So many of these kids need something different. Can we be open to that? How can we change what we're doing and make it better?

6. Last, and this is a big one: please, never stop communicating. I need feedback about what's going on with my child. I need to know what he's learning in his therapies. Do you know what it's like to drop off your child at school and then just sit and wonder? When your child has special needs, you can't just sit back and assume everything is fine. I am grateful my son can tell me the basics about what he did at school. But he can't tell me if he listened to another peer who was trying to reach out and talk to him...if he played alone or joined in on games on the playground. He can't tell me (yet) if another child made fun of him due to his say, exaggerated interest in mens bathrooms. He can't tell me specifically (and this is a big one) whether or not he is getting the therapies he is supposed to be receiving. When I don't see any notes from a therapist for not weeks but months, I wonder. I wonder if he's even getting the therapy he needs. I wonder, if a staff person is away or out for awhile, if they even try to make up sessions lost? I wonder what in the world he is learning. For a child that unfortunately right now does not qualify for any outside therapies, I can't tell you how vitally important it is that he receives quality therapy in the school setting. I shouldn't have to wonder what's going on. When I'm left wondering, I lose my sense of trust. And I don't want lose faith in the very people who are working with my child, each and every day, who I need to believe in my child and to provide him with the tools he needs to excel.

This is what I'd say, if I knew I could be articulate; if I knew we had the time; if I knew I wouldn't get lost in emotion or rattled by their contradictions.

This is what I'd say.

Tuesday, October 2, 2012

Playing with Blocks

You could say I was having a "case of the Mondays."

The microwave broke.

A check we'd been waiting and waiting for failed to arrive in the mail. Again.

The woman who was supposed to call, who's supposed to help me argue why Ethan should qualify to have a social skills group covered by his health insurance, also did not call.

In Target, while Ethan fooled around with the same buttons in the same aisle he always likes to go to, I saw another mom from his school, another mom of a child with autism, someone who I've been wanting to get to know for two years. Her son is a year older, and she doesn't know me, and once again I couldn't figure out  how to introduce myself without looking like some kind of stalker.

I watched her walk away, feeling a little bit like high school, when I used to secretly watch my "crush" (Ron the trumpet player, if you must know) in the halls and wonder if he would ever notice me. I wondered for the hundreth time why it is that relationship, real relationship with people, is so hard.

This was not a pity party. This was a kind of plodding weariness that comes when you feel as if you've lived the same moments, over and over; kind of like that old movie, Groundhog Day. This was knowing the-chicken-hadn't-defrosted-so-we'd-have-to-have-pancakes-for-dinner. This was telling the kids for the twentieth time not to climb on the big concrete red ball outside of Target or someone was going to fall and smack their head. This was nodding with that famous mom "um-hmm" when Ethan asked me to confirm yet again that our dryer was on the left and our washer was on the right, and again when Anna had to show me one more time how she could touch her ankle behind her ear (while walking!).

This was another opportunity to bite my tongue...take a deep breath...keep believing for the best.

At home Anna took out the blocks -- the colorful, wooden ones. I have no idea why. She rarely plays with them today, but back in the day, when Ethan was taking naps and Anna was in half-day preschool, she and I had great fun with the blocks. Usually we would build a town for her My Little Ponies. The town always had not only houses, but a school, store, church, hospital. The town always looked essentially the same. Anna was too young to notice my lack of engineering vision. Sometimes I just wanted to go do something else, but there was something special about building blocks. I think it had something to do with not just spending time with my child, but also having a singular focus on one thing for a few uninterrupted moments. How often do any of us do that anymore? Sometimes I think I've forgotten how. I think I've forgotten how to not cook breakfast and listen to the radio and check email.

So Anna took out the blocks and asked me to play.

Ethan wanted to join us. I knew what that probably meant: Ethan wanted to figure out a way to knock down Anna's town and make her mad. I grabbed him a toy dump truck and asked if he wanted to fill it with blocks. He started to take Anna's blocks; a tug-of-war ensued. We worked out a compromise over which blocks he could use and which were Anna's territory.

Then we built a town.

And while I made tiny wooden structures I forgot about the pancakes and bills and people I never seem to be able to get to know. For a few small moments I was somewhere else: MiniVille, the land of Anna's Lalaloopsy miniature dolls. Anna was constructing the other side of town. Ethan finished his dumping and started to make a tower -- a complicated one, with all sorts of cylindric spires coming up off the square blocks.

I looked up at the clock awhile later and realized we'd been on the floor for nearly 45 minutes. Forty-five minutes! Anna and I had played like the olden days, without non-stop Ethan interruptions. Ethan had attempted (in his own awkward way) to add to our play themes. The town was still standing. No one was crying. Forty-five minutes!

For a moment, I remembered what it was like to be a child, lost in play...delightfully lost in imagined worlds.

And then it was dinner and clean-up and wrapping up pipes in the basement so our heating bill is a smidge less outrageous and math homework and wondering why the cat isn't eating and finding misplaced papers.

But as I fell asleep, I thought of us playing.

I thought of four years ago, on the rug with my little girl. And two and three years ago, on the rug with Ethan and his therapists. And a year or two ago, my kiddos playing, truly playing together on the rug for the first time.

Some days the monotony can deceive us into thinking we aren't going anywhere. Some progress -- for all of us -- is so slow it can only be measured in years. Some victories will probably only be seen in the context of a lifetime.

And I guess sometimes the real victory is what is gained in the process...those concepts that are so great in theory and not so fun in practice. Like patience. Perseverance. Steadfastness.

And sometimes, you just have to get down on the floor and play with the blocks.

"Let us not become weary in doing good, for at the proper time we will reap a harvest 
if we do not give up."  - Galatians 6:9