Friday, February 28, 2014

Being Heard Feels Good

The meeting was drawing to a close. Everyone was shuffling papers and pushing back chairs while chatting and laughing. We had met to talk about how Ethan was doing and what assessments the school will perform on him over the next month as we plan for next year.

I was trying to figure out what was different -- why this meeting felt so good.

Obviously there was the fact that they were saying some really positive things about our little guy. And when your child makes progress, that makes the people who are working with him feel good (and honestly, makes them look good). There were definitely some happy vibes in the air, but that wasn't it.

I looked around at the four other women who'd been sitting around the table with me. There was someone missing. The principal was not there; instead the acting head of special ed. for the town's schools was in attendance.

There was a reason for this: a month before I'd called the department to complain about it taking two months to see a current IEP for Ethan, due to some kind of beaurocratic red tape that was never really explained to me by anyone I'd asked. Eventually I'd ended up on the phone with this woman (I'll call her C.), who I learned had actually come out of retirement to fill in at the position following a ton of turmoil in the department. A five-minute conversation stretched to 20 as I poured out some of my concerns about special ed. in Ethan's school. We talked about Ethan and how I'd felt "pushed" into not having him evaluated, even as we were also being pushed to have him released from special ed. We talked about other kids and families (without using names, of course). I'd been hearing too many troublesome stories. I was tired of none of us being heard.

C. listened. She offered to personally drop off the updated IEP at our home later that afternoon, and she said we needed to set up a meeting at the school to discuss testing for Ethan, and that she wanted to be there.

So here we were, six weeks later. The principal was missing but C. was there. And that was it. This is not to "pile it on" the principal. She is very competent and capable. She's certainly civil and pleasant enough in meetings and is obviously trying to do her job and keep everyone happy, with meager resources.

But I hadn't realized until she wasn't there. I hadn't realized what it was like to meet without tension, without assumptions. I wasn't being treated with the guarded, business-like if my child were an item on a to-do list to be checked off quickly and efficiently. For once we were sitting down with no air of "us vs. them" but just all of us in this together to help a little boy. I felt trusted rather than tolerated.

As we left that room, bantering pleasantly, I wished that more often, the people in high places making the big decisions understood that parents of kids with special needs don't want to be pandered to. They don't want to be just listened to...they want to be heard. That we are not the enemy bent on making unreasonable demands...that we are not the uneducated who need to be schooled in the way things really work in the special education system. We're people who just want to be seen as individuals, not burdens. Just the way we hope they see our children, every last one of them, with their myriad needs, challenges, and yes, talents and abilities.

Wednesday, February 26, 2014

Mercy Seat

Hello, good morning, how you do?
What makes your rising sun so new?
I could use a fresh beginning too
All of my regrets are nothing new

- "Learning to Breathe," Switchfoot

I sat in our bedroom on the radiator that abuts the wall just below the windows; what I also call the "pity party seat."

I call it that because if the radiator is not blazing hot, it's a great cozy place to sit and look out at the two big maple trees just outside it; and whenever I do I for some reason envision a scene in a movie -- you know, the part where the woman is looking pensively out the window while a stray tear rolls down her cheek?

So I was in the pity party seat, and I was having a pity party as I looked out at endless piles of dirt-encrusted snow. Is there anything worse than February in New England? Some people may say March, but March has the hope of Daylight Savings Time and for me, Red Sox baseball. February is stale and cold. The roads are pock-marked with potholes. You've baked enough cookies; wiped up enough trails of snow and mud tracked through the house; bundled yourself up one too many times to protect from icy blasts. Winter needs to be done, and quickly.

I glared out at February. The house was thankfully momentarily silent. Anna had come home from school and proceeded to explode so forcefully about something I wondered if we had somehow just propelled ourselves into the teenage phase several years early. The little one had fussed on and off and off and on.

And Ethan, oh Ethan. Ethan had been home sick from school after being home for a week of vacation and two snow days before that. I'd kept him home because I thought he was sick after a truly unfortunate incident in the night that involved many bodily fluids and him not making it to the bathroom on time. Oh, it wasn't pretty, and I was still thinking about it.

It wasn't pretty, and hours later I was sitting and thinking and trying to bat away the guilt the way you blink really hard when you're trying not to cry.

You see, the night before had been going so well. Little Miss Chloe had actually almost given me four hours of consecutive sleep. I was about to put her back down and crawl back under the blessed covers, but I went to check on Ethan. And I found him in there in his mess, disoriented. And then there was a bed to strip down, and he had to be thrown in the bath. There were walls and the floor to clean.

There was all of this ugliness in the midst of my own exhaustion, and uglier still was my reaction. I wasn't just angry. I was FURIOUS. And I knew why I was furious...beyond the fact that I was dog tired and this was all disgusting and I didn't want to deal with it. I was furious because at first I didn't know -- I couldn't tell, and sometimes it's hard for Ethan to articulate. I thought he had done this all on purpose.

Here's the thing, here's yet another thing I tend to be touchy about. Bathroom incidents. When you grew up with a brother who tended to do unspeakable things on his bed, the walls, the floors, toys, you name it, this type of thing can strike a nerve and bring back all kinds of memories. Add to the fact that Ethan had awhile back gotten into a horrible "let's pee on my train table and make mom mad" phase, and that he'd gone to bed angry at us for having to go to bed earlier, and you could see where I might be coming from.

And so when I found Ethan in a big mess in his room, and all he could tell me was that it was too dark and he hadn't wanted to go into the bathroom, and I looked and saw handprints on the walls, I started to yell. I cleaned and cleaned him and yelled more. And it was only as time went by and I calmed down and he was able to speak a little more clearly, that little by little I began to realize that apparently he wasn't feeling well, and he just hadn't made it to the bathroom on time.

Thankfully, children are forgiving. Before we'd tucked him back in last night I'd told him it wasn't his fault and that I loved him. I tried to redeem myself. But now hours later, I sat and looked and thought about how many times I'd failed since then. How many more times I'd yelled. How my reserve tank of energy seemed so low that I couldn't seem to muster much semblance of self-control, even as I chided my daughter for not having any.

Now I sat there as the sun thankfully began setting on what had been a truly miserable day and wondered if it was bad to wish I were somewhere else...on a beach...on a stage...on a couch with a cup of tea and piles of books and hours and hours to read them.

Yet even if my daydreams became reality, I wouldn't be able to escape myself. I couldn't escape the scared look Ethan had given me. I hated the way I had judged my child out of my own past; out of his. I hated the fact that there were many times I blamed the autism before seeing the person.

I hated feeling like I couldn't cope.

So I sat with that for awhile, on the pity party seat. Then I chose mercy. As the moments ticked by, slowly I remembered, I attempted, to be gentle. With me.

I thanked God that He did not parent me only based on the past and on my many present failures.

I looked out at the snow and remembered that spring always comes. The most beautiful springs follow the worst winters. It's one of the things I love about living in New England. It's like C.S. Lewis referenced in one of the Narnia books, when he talks about that deliciously wonderful feeling of waking up and realizing a bad dream was just that, a dream, and that the feeling of awakening is so beautiful it's almost worth having the nightmare, just to experience the waking.

I exhaled the truth of all of my mistakes...and breathed in the grace to keep stumbling forward.

Saturday, February 22, 2014

More Observations on Life With a Newborn

We're coming up on Chloe's one-month birthday (what? really?!), and if my younger daughter's behaviors could be divided up like a pie chart, there'd be a huge chunk for sleeping/eating, a close to equally large chunk for fussing, and a smaller slice for calm/quiet/alert. I love my little girl to pieces, but wow, she can be tough to figure out sometimes. How great would it be if babies came with little Alice-in-Wonderland-like notes ("Feed me!" "Burp me!" "Put me down for a nap!").

With a newborn, how do I have time to write all of these blog posts, you might ask? It's called Chloe's 5am feeding. I'm a morning person. By the time we're done with that, the sky is getting light. There's no way I'm going back to bed! At least I get some quiet time, even if my eyelids are sagging.

So, Observations on Life With a Newborn, Part Deux:

- I'd forgotten about this, but having a newborn, particularly one who is nursing, can be a running Race with the Clock. Do I dare attempt grocery shopping or will the fussing begin? Can I run down and throw that load of laundry in the dryer before the screaming starts? Will this frenzied rocking of her carrier really help hold off her wails for just a few minutes so I can stay in church until the service ends?

- The phrase "Sleep when the baby sleeps" makes me want to break out into maniacal giggles. I could sleep when Chloe sleeps, technically. Only then Ethan wouldn't be picked up at school, dinner wouldn't make it on the table, and we'd be wearing dirty clothes that we picked up off our bedroom floors. Never mind Dan and I would never have more than five minutes of conversation in a given day. And so it's more like "run around and try to get done everything that absolutely HAS to be done while the baby sleeps."

- From Ethan, after hearing Chloe lustily fill her diaper: "She needs to be potty trained!"

- Back to the nursing thing: Long ago when I worked as a library page, I'd sometimes see this book from the seventies called The Womanly Art of Breastfeeding. The cover had this serene, hippie-ish woman (you know, with the Marsha Brady long hair parted in the middle) sitting in a rocking chair near a window as a shaft of sunlight shone down on her lovingly nursing her baby. I think of that book now and envision the Whittemore, new millennium version. The cover would be me sitting on the couch, oh-so-not looking like Marsha Brady but watching her on TV (yes, I've introduced the kids to my childhood Brady Bunch obsession) while Chloe tugs on me screaming and gassy. My kids are on either side asking, "Why is she crying again?!" and there are dried bits of spit up splattered over me. There's certainly no beam of sunlight illuminating me because it seems to be constantly cloudy, dreary, drizzly, or snowy outside these days.

- If you see me and you are attempting to empathize with me about not getting enough sleep, it's okay if you don't mention that I look really tired. It's even better if you don't go out of your way to talk about the big circles under my eyes. I know you were trying to show you care. It's just your helpful comment compounded by my sleep deprivation led to a nice little crying session in the car down
Interstate 91. And whatever you do, there's no need to mention my weight. Please? I'm a bit touchy at the moment.

- There's nothing like being at home for long stretches of time alone with the baby, after running around like a maniac all fall, to make this introvert realize how much she at times really, really loves people. I just brought Chloe to the doctor and had the longest conversation I've ever had with someone in a parking garage. I wonder if the woman was a bit wary of the crazed look in my eyes, the one that says You're an adult! I've barely seen anyone all week! Talk to me! Same goes for the cashier in Target.

- Baby number three brings out the voice of experience. And it whispers that no matter how long or hard she cries, no matter how difficult she is to decipher, this too shall pass. Every phase is just a phase, and the newborn phase is the shortest of all. I don't have to relish every moment, but I can step back and find something to the softness of her head or those tiny, long graceful fingers.

- And finally: Chloe has brought me a great gift. Thinking we were done having children, and deciding maybe we weren't and maybe we'd like to have another, and finding out so incredibly, nearly miraculously quickly that #3 was on its way, has left me with something that refuses to go away, an understanding I didn't really have with my other two. She is not mine. Chloe, like all children, is a gift from God who ultimately belongs to Him. And when I know that, I have an easier time, when flooded with worries or stresses big and little, letting her go. She's yours, I can whisper a little more easily. She's yours. And if I can remember that with the little one, maybe I can remember that with the bigger ones...and let go of some of those burdens of motherhood, those loads of guilt and fear and expectations, that we were never meant to carry.

Wednesday, February 19, 2014

Numbers Game

The other day I was driving Ethan home from school when he announced one of the kids had handed out birthday party invitations to the class. "We need to call and tell them we are coming," he urged. "The number is ...." he proceeded to give me the phone number without missing a beat. Then he stopped. "Did I get that right?" he said to himself, digging out the invitation from his backpack and checking. "Yes!"

I sat there shaking my head, wondering how in the world he did that. I can barely remember my own phone number. I'm only half-kidding.

Ethan loves numbers, time, calculations, dates, and counting. Math is a joy. This is quite common with people on the spectrum. Not to oversimplify, but part of the reason has to be that numbers are so predictable. Numbers do what you want them to every time, unlike pesky people who can be so hard to read, who don't live by hard and fast rules.

Ethan asked to have a calendar in his room and is always sure to keep it on the right month. He has inherited my freaky ability to remember anyone's birthday (as well as age) and loves to announce this information to anyone who will listen (by the way, thanks little guy for informing everyone at the hair salon how old I was, once you learned the hairdresser and I had the same birthday).

Playing a board game with Ethan takes me back to childhood with my brother Nate (who shares some of Ethan's interest in numbers; apparently in kindergarten the teacher was annoyed he spent most of the time watching the clock. My mom's argument was, who cares if the boy doesn't want to color? He can already tell time!). Every time we play Sorry or Chutes & Ladders, Ethan (like Nate) has to calculate the possibilities for both himself and anyone else playing.

"I need a six! I want you to get a three," he'll announce, wishing the evil big slide on me in Chutes & Ladders. Or, "I do NOT want you to get a two," he'll say, staring at the cards, willing it to be any other card so I won't win the game and send him into tears. Sometimes I just want to play the game, you know, without all of this calculating, but Ethan will have none of it.

It goes without saying that math is a breeze for Ethan at school. He adds and subtracts numbers in his head quite easily, which infuriates Anna. She has an idea in her head that he's the one who's good in math while she's the one who's good at reading...only Ethan is a pretty good reader, too. She finds it terribly unfair that he doesn't struggle with either, and she doesn't quite get it when I tell her he is going to very soon face challenges with retelling and writing stories, exploring themes, that kind of thing. She's just annoyed, mostly because she works so hard at math and it doesn't come easily. I can empathize. Sometimes I watch Ethan and Dan with numbers and wonder what it would be like. I remember getting a tutor in high school for Algebra 2 and still being barely able to make it above a C average.

I wasn't surprised to see Ethan come home after a visit with the grandparents the other day with a shiny new calculator. Apparently they'd taken a trip to Ocean State Job Lot and were allowed to pick out one small item. Of course the calculator would be more appealing than any toy.

I knew once the Olympics came on he'd enjoy it because every sport involves some kind of timer, and watching the numbers. These events come down to mere hundredths of seconds. It's all about the clock-watching. Sports and numbers, what could be better? The other night we had a double-whammy. We watched people try to beat each other out in the bobsled while Ethan played with his Usborne "Telling Time" book. This book has single-handedly taught Ethan how to tell time. It's got a big clock on each page with hands that move, and it tells a story that follows a family through each hour of the day. The reader is supposed to move the hands on the clock to match what time it is in the story -- which Ethan loves to do. But lately he's liked to match the clock in the book to real life. And so, as we sat on the couch and watched TV, he continued to check his watch (of course he wears a watch!) and then slowly move the hands on the clock to match the real time.

"Ahh, 7:37," he'd say, then look over at his book clock. Slowly, he'd move the minute hand to just the right place. "There," he'd say proudly, looking immensely satisfied. A few minutes later, he'd start again. "Okay, 7:40..." Anyone else would be bored out of his mind. Ethan was in his element.

A few weeks ago he discovered his V-Tech tablet had a timer setting, and that it was great fun to set it and measure how long it took to do, well, just about anything. I thought we were having our own version of the Olympics; like getting ready for the day was some kind of sport.

"Let's see how long it takes you to get dressed," he announced.

"Uh, okay..."

"Ready, go!" he called from his room. I actually found myself feeling the pressure, racing to get ready, as if I were one of the bobsledders trying to beat my personal best, trying to stay on the podium.

Then he wanted to measure how long it took to brush his teeth. To make his bed. To walk down the stairs and find his shoes. We were just about to the point when Ethan was begging to take the timer to Target and calculate how long it took to shop, when the tablet's batteries mercifully died. Let's just say I haven't been all that eager to replace them.

I told Ethan I would play a game with him after I finished writing this. He needed me to give him an exact time, of course, so I said 15 minutes. He set the timer on me. The clock-watcher has told me my time is up. I have no choice but to comply. In this house, numbers are king, and numbers never lie.

Tuesday, February 18, 2014


Funny the way it is, if you think about it
One kid walks 10 miles to school, another's dropping out
Funny the way it is, not right or wrong
On a soldiers last breath his baby's being born
Funny the way it is, not right or wrong
Somebody's broken heart becomes your favorite song
-- Dave Matthews Band, "Funny The Way It Is"

I almost hesitate to write, because before I even start here, I know I have no ending.

Writers like to be able to tie everything up in neat packages; to come full circle with some sort of succinct concluding thought that brings it all together. Only I can't do that today.

Lately I've been thinking of some people in my life who continue to deal with hopes deferred. They lift up prayers that seem to go unanswered; they search for breakthroughs that don't come; they grow weary; they keep trusting; all hell seems to break loose against them yet they continue to cling to a God who by outward appearances seems to either not be listening or not care very much.

In times like these how easy is it in our very human nature to want to clench our fists together, look up to the heavens and scream, "WHY?!!"

I struggle with this, big time. I think in general our society struggles with this, and it's one of the reasons so many people have rejected their faith or can't accept the concept of having a personal relationship with God.

We are people of science; of cause and effect; of if/then statements and evidence and answers. We can't be left with I don't know. That's unsatisfactory. Everything that happens must be explainable. Then we can control it; we can harness it and digest it and make it ours.

Only God is not ours. And faith is not faith if it can be explained away in Three Easy Steps. I think if we believe first off that we are not random but created beings, we can understand just a little. What's the scripture, about the pot saying to the Potter, "Why did you make me?" It seems almost foolish. Yet this is what we do; we scream at the author of everything.

A friend once told me that she pictured our lives as this incredible, colorful mosaic. Any individual part was just color, one pattern, not so breathtaking as if we were able to step back and see the way all of pieces in the end look woven together into something spectacular.

Life can seem funny, like Dave Matthews sings. The randomness. The way evil sometimes seems to win while good people suffer. Someone's dying while another gets a second chance. It can seem like a bad joke, I know.

I choose to believe it's not a bad joke. I choose to believe it's a mosaic, only I can see just a part.

You know, these days as I spend a lot of time nursing a newborn, a certain verse has been running through my head. I'll pick up a hungry, screaming baby, and she gets frantic. She's turning her head left and right, sucking on her hands, trying to suck my neck. She's distressed. Nothing will calm her. And I remember that verse, the one I just came across the other day:

"But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content."  (Psalm 131:2)

So many times I am the inconsolable newborn, turning back and forth, desperate for answers and explanations, and wanting them NOW.  Feed me information, God.

What does it take to become the older child, more mature, able to sit with her parent calmly, to be still and rest?

I guess it's trust. I guess it wouldn't be faith if you could see all the way to the end of the path.

I am guessing I will never have close to all of the answers...and that maybe, as I'm shaking my fist at God, He is busy crafting something I may never completely see, yet is more beautiful that I could possibly imagine.

Friday, February 14, 2014

What The Oil Man Taught Me

The oil guy came an hour early. The oil guy showed up an hour early, which is why there were piles of (almost) folded laundry everywhere, and several bags of trash near the door waiting to go outside, and I was still wearing my glasses as well as a bit of baby spit-up on my shirt. I don't think he noticed, however, because he was too busy shaming me about not calling earlier to have our furnace serviced. The thing had startled rattling, you see, and emitting some fumes, struggling to cough the heat out. Not a good thing in New England, in February, in the midst of the biggest snows of the season.

So the oil guy was lecturing me, and I was biting my lip and biting back tears. One of the worst things you can do is insult me or the way I care for my home. It's a touchy subject. I lived my first 10 years in a shabby apartment, although my parents did their best with what they had. Our home was clean; our home was nicely decorated (my mom is far more crafty and has a better eye than I ever will). But there was the hole in the bathroom wall and the drab gray shingles and the upstairs bathroom that didn't have a sink. And just when I thought I could get past all that and still lift my head high because these things didn't make me any "less" of a person, my brother was diagnosed with autism, and started doing crazy things like attempting to eat Ajax and destroying the furniture, and God-forbid if I was going to have anyone over. Then we moved into a series of other apartments and rented houses and just before I moved out my parents bought a home of their own.

Then I got married and we got a nice little apartment and then a house that had its issues but was cute enough, and I realized that this was all lovely, and that time had marched well beyond my childhood...but I hadn't. This whole issue about anyone walking into my house and judging was like a sore spot, a wound still tender, or one that hadn't healed perfectly right.

And so the first time we had a few guys over to take a look at work we should get done in the house, and they emerged from the basement laughing at the ridiculous washer hook-up, I felt the sting. When they handed us a laundry list of items to fix that would cost thousands and we knew would take every last dollar and years to rectify, my heart sank. We did some of the improvements. But life gets in the way, you know? And in a house that's nearing 70 years old, every small item was of course not small and was linked to bigger, costlier items that would need fixing.

A plumber came once and what was supposed to be a fixed bathtub turned into a diatribe about how they needed to rip up our bathroom for thousands of dollars or else leakage was going to destroy everything. Then there was of course the other plumber recently who brought in his camera to take a picture of the way our toilet was set-up, snickering and incredulous. And Mr. Oil, wagging his imaginary finger, telling me why I shouldn't let things like getting the furnace serviced slide, especially with a "relic" like the one we had in our basement.

Do you know, I wanted to say, that I DO care about taking care of our furnace; that I'm not a lazy, thoughtless slacker? Do you know the kind of autumn we've had (the time normally people attend to such things)? Do you know my husband is working crazy hours and this fall I was running around working as well, while expecting baby #3? Do you know money is a little tight right now and while we're not careless, we also thought something like this maybe belonged a little lower on the priority list? Do you know I have a newborn upstairs who's going to start crying any minute and I know my house is a mess but darn it I'm doing the best that I can??

He spent two hours puttering away in the basement, and slowly my own steam started to leak away.

He wasn't evil; he was the repair guy from the oil company. He just happened to be the person used that day to remind me there are still things I'm working on; insecurities to overcome; past memories to let go.

Beyond that, his flippant words steeled my resolve to try to remember, before issuing blame, before jumping to conclusions, the other person's story, and the story behind the story. What's that saying? Be kind, for everyone you meet is fighting some kind of battle.

Oil Man came out from the basement. Those words whispered in my head, and when they did, I saw him -- no longer as the master of insults, I saw him. I saw his missing bottom tooth and the gold one next to it. I saw that his smile was actually rather kind as he saw me holding Chloe. I heard him try to temper his words as he mentioned what was going on with the furnace. He spotted some brochures from our business and asked to grab a few so he could do something "fun with the family."

He did indeed charge us way too much money, but as he loaded up his van and drove away, I couldn't be angry. Sad maybe, because my same insecurities seem to come up again and again. I felt raw and exposed, but at the same time, maybe that was okay. Knowing my trigger points, and knowing that the reason someone was bothering me SO much was because of me, not them, had to be part of winning the battle. And remembering I'm not the only one fighting a battle, that we all have our very human moments, is one way to defeat that long ago lie that somehow I'm just not good enough.

Wednesday, February 12, 2014

7 Random Observations on Life With a Newborn

So little Miss Chloe is approaching three weeks old, and we are attempting to get into the swing of things here at home now that our fabulous two weeks of meals and goodies sent from church and other friends has drawn to a close. How are things going? Well...

1. True to his tendency to "march to the beat of his own drummer," Ethan may be feeling some of the typical middle-child-jealous-sibling-thing, but it's manifesting in its own creative way. Thankfully, he doesn't take anything out on Chloe. On the contrary, he likes to continually give her kisses. However, he's got an aggressive side that's come out. I'm glad he is able to express himself, but it's a little disconcerting when he announces at the breakfast table that he "wants to punch the whole world." I tell him to punch the couch instead when he's mad, but I don't think that sounds nearly as appealing.

2. After our first grocery store debacle, we've come up with a different system for shopping that seems to (please God?) be working. Anna (carefully!) pushes Chloe in the stroller while Ethan (thinks he's pushing) the cart (I keep a pretty tight grip on it to avoid collisions). We kind of look like a min-train parading slowly through the aisles, but so far, so good.

3. Evenings are fussy time when I become Chloe's human pacifier. She's not hungry, she's just cranky. Of course this occurs around dinner and homework time. Babies have excellent timing that way. Thank God for the Olympics. If I'm going to be held captive for several hours, at least I can watch some ice skating, ski jumping and so on (as long as it's not Bob Costas' creepy infected eyes).

4. Yes, it IS possible to nurse the baby, read a book to a child, and eat dinner. Just not well. Sorry Chloe for the salad leaves dropped on your fuzzy little head.

5. Venturing out with a small baby into the cold this time of year, people commend you as if you've just scaled Everest. "Look at you! So brave!" I hear all of the time. "I can't believe you've left the house already!" I tell them I'm not brave, but I do tend to get stir-crazy. And when you've got two older kids it's kind of difficult to hunker down and not be seen for a month or two.

6. Speaking of that, I'll tell you who's really brave -- those of you out there who have kids a year or two apart. I can't emphasize this enough: You amaze me. My six- and nine-year-old have been tremendous helpers. Sometimes the little things like having one try to cheer up a fussy baby or another run and get me the phone or a diaper can make the biggest difference. I know so many people who wanted to have all of their kids close together, and that's wonderful, but I know now more than ever that it would have been extremely difficult for me. God knew what He was doing when He gave us Chloe when He did.

7. That brings me to this: the other night Chloe woke up as she always does and after feeding her but before putting her down I just held her all swaddled up in my arms and cuddled. Her skin was soft and sweet and she rested her little head on my helpless, so secure. I thought about how this was SO the way God feels about each of us. Somehow, I could see the picture so clear in my head, as I held her and whispered in her ear. I thought about God seeing each of us in our helplessness, in our smallness, and loving us. We love because He first loved us.

There is nothing like the tiniest of children to remind us, to give us a living, breathing picture of the Father's love. There is nothing Chloe has to do...nothing she has to earn. She is loved just for being. We all are. That gives me the sweetest kind of peace.

Sunday, February 9, 2014


To the hospital pediatrician and the kindly nurse practitioner in Orthopedics at Connecticut Children's Medical Center:

You both said the same thing, when you told me. As you told me my newborn, the sweet little thing, appeared to have hip dysplasia, you looked at me carefully. When you detailed what it meant to have a shallow hip socket that required her wearing a harness at the very least to start in order to correct the issue, when you said she would need to wear it 24 hours a day and come back for ultrasounds and continue to be checked because if left untreated the condition could lead to one leg being shorter than the other, to pain and a limp, I felt as if you were both holding your breath, watching me quizzically.

"You seem to be taking this very well," both of you said in more or less the same words, the pediatrician on Chloe's very first day in the hospital, and the nurse practitioner four days later. "Usually this is harder on the moms than it is on the baby."

You have to know I DID cry a little. I am not this great stoic. And at times I'm certainly not a model of maturity and calm. I DID cry at home, thinking about my baby being shoved into a brace, and wondering if that meant it'd be difficult to cuddle her and if it would bother her terribly, and wondering how long she'd have to wear it and if it would make all of those milestones difficult if the brace caused her to struggle to roll over, or crawl. And yes I selfishly thought of all the fun of dressing her in cute little girl outfits and whether or not I'd be able to or if the stupid brace would always be in the way and I'd have to answer a million times to people wondering what was wrong with her. I am only human, and while I would of course always do whatever we needed to do to keep her healthy and strong and growing correctly, I did feel a little sad.

But I didn't cry or freak out to you, and you kept making sure I was okay, and I reassured you that I was. I told you it was because I'd already done a little research on my own and understood what was going to happen. Knowledge is power and all of that. And yes, that was true, but there were two other things I didn't tell you.

I didn't tell you that when you hear the words "hip dysplasia" followed after by "but it's correctible" it's much different than hearing "your son has autism" and knowing it is something that stays with him always. I didn't tell you about the helplessness of learning your child has a disability and knowing there is nothing in your power (like a brace, or a pill) that can just - poof! - take it away. I didn't tell you about walking into Connecticut Children's to take Chloe to Orthopedics and seeing those elevators I took up to the fourth floor, to Developmental Pediatrics, the day Ethan was diagnosed.

And there is something else. When I push Chloe in the stroller down those colorful halls at CCMC so they can take another look at her hip, I also pass those elevators that brought me to Intensive Care four years ago, just a few months after Ethan got his diagnosis. My friend's baby girl was diagnosed with a rare kind of liver tumor when she was just a few months old. As I look down at my sweet girl I can't forget the face of that other one as she lay in a hospital bed so big for her little body. I think of fall sunshine streaming through the windows and the brave smile of her mom and how everything seemed so wrong. I remember the January day a few months later, a day much like the one when Chloe was born, when we gathered at the church to say goodbye. In my mind's eye, again and again, it's emblazoned: I see us sitting there and looking to the front at a very small coffin, and I can't forget the tears that wouldn't stop. They shouldn't make coffins that size, I remember thinking angrily. We should never have to see a coffin that size. Ever.

Yes, my daughter has an issue with her hip. And it's a pain to drag her back and forth to appointments and to shove a brace on her all of the time, especially if she's shrieking as I do it. If the brace didn't work and she had to have surgery or her legs in casts for months at a time, it would be a hardship. I'm sure there'd be more tears on both of our parts.

If this were my first child, and I was still driven by the Parents-magazine, BabyCenter-mindset that you just have to do everything just right for your baby and it will all turn out fine, that everything is still under your control, then I would perhaps be "losing it" as you well-meaning hospital staff are expecting me to.

But I know now. These last four years have granted me a precious gift that allows me, for the most part, to look down at my daughter and cherish her even more than I thought was possible. It wasn't something I willingly asked for. But now through the lens of time most days I see, I remember down deep to my core what it is to be blessed -- with perspective.

Saturday, February 8, 2014

Well, To Be Precise...

Being at home with a newborn (and in particular one who likes to nurse a LOT during the day) means I've had time to catch up on one of my all-time favorite shows, Parenthood. I've mentioned the show here before. While all of the characters and storylines are gripping and seem true to life, I have a soft spot for Max, the teenage character on the show who has Asperger's.

When I first discovered the show Ethan was just 2 1/2 and I had a hard time comparing his toddler-self to an older boy on the spectrum who seemed very high functioning. But as time goes by, more and more I see shades of Ethan in Max (whose character, I believe, was modeled after the son of the show's creator). The other day I was watching and in the episode the dad said something like, "So you stayed at the store until 2:30" and Max replied, "No, it was 2:37 and I stayed for 1 hour and 9 minutes."

There, I thought, is Ethan. For him it's all about about living out this balance of being precise, blunt, and black and white.

The other morning he woke up early. Again. This seems to be the trend if he goes to bed too late. So, to preserve a little of my sanity, I told him he had to stay in his room until 6:30. He came bouncing down the stairs at 6:28.

"Hey, it's not 6:30 quite yet," I warned, figuring he was once again trying to test my limits.

"But daddy said if it's 6:28 it's like being 6:30," he protested. I realized immediately what he meant. In the past if someone asked what time it was, and it was, say 3:01 and you answered 3 o'clock, Ethan would immediately correct you. "No it's not, it's 3:01" he'd say smugly yet a little confused. Or you couldn't call 6:59 seven o'clock because Ethan would be there to tell you that it wasn't seven yet. I could see that while Dan had helped clear up one issue, we now had another. Busted.

"Well, when we're talking about what time it is it's okay to be a few minutes off," I said, stumbling. "But if I say go to your room I mean stay until the exact minute." Even I knew how lame I sounded. Darn these rules I didn't know existed.

When I'm nursing the baby, I'll tell him "the baby's eating now." It gets him every time. "No she's not, she's drinking," he corrects me. And as always I think, well, yes, technically...

In the car, we've switched Ethan to the other side of the back seat, which means he now has full view of the gauges on the dashboard. In addition to his reminders about how full my gas tank is, I also now have an official radar detector in the back of the car.

"Mom, you're going 70. The speed limit here is 65." Or, "Are you going 15? That's the speed limit here in the parking lot." I finally told him the other day that police officers won't stop you if you're going just a few miles over the speed limit. That wasn't evil, was it? I mean, I think I heard that somewhere. It's why I don't feel too bad about cruising at 70 on the highway but try not to go over that. I felt like I had to find a solution to what promised to be incessant nagging. Yeah, I know. I could just, you know, actually slow down.

Then there's the bluntness, so much like Max. We're going to need to work on the bluntness. This is especially hard for me because if anything I err on the side of never telling it like it is. Don't ask me if you look fat, if your idea is a bad one, if your story is good. I hate to lie but I also hate, really hate, hurting people's feelings. I know there's some kind of mature balance and I need to move a little closer to the honesty side. For now, Ethan's got that covered.

"Your breath smells bad," he will announce in the morning, if he gets close to other members of the family. I've also been told many times that dinner smells bad, and of course, already, that Chloe smells bad.

Not long ago he started telling me about a classmate who was talking about her grandmother.

"She said her grandmother was 85," Ethan was saying. Oh no, I thought, as soon as I heard that. No, he didn't.

Ethan has this thing about people getting old. It's part of the list of imagined rules he carries in his head. When you reach your eighties, you're basically a goner.

"Ethan," I said in a small voice. "You didn't tell her that means her grandmother is going to die soon, did you?"

"Yup," he answered matter-of-factly. Darn it.

"What did she do?" I asked, not really wanting to know the answer.

"Nothing," he replied. But I wondered. I wondered if a little girl went home crying to her parents that night.

I know in time as Ethan grows these types of quirks seem less cute and more rude. I know that he has the potential to be a "Max:" honest to a fault; not fully understanding the impact of his words on others. I know social skills groups can't solve everything, but I know that we have seen flashes of empathy from Ethan, and that in time he is slowly learning to gain others' perspective.

I also know I don't want to erase away every bit of the way he is. There is something refreshing, actually, about someone who tells it likes it is (within reason), and who calls us out on the sometimes contradicting and often confusing rules we live by without even realizing it. Ethan would be able to tell someone they didn't look so great in a certain dress. I'd like just a tiny dose of that.

Tuesday, February 4, 2014

Confessions of the World's Worst Couponing Mom

So recently Dan and I have come upon some of those "extreme couponing" and "world's biggest cheapskate" shows. At first I could barely contain my snickering. Walking up to restaurant patrons and asking for their leftovers? Digging in the trash for your spouse's anniversary gift? Buying 200 tubes of toothpaste to get a huge bargain? These people seemed off the deep end.

Then, as I kept watching, this little voice whispered that while yes, these people seem to have no dignity and are more than a wee bit obsessed, they are saving money. And: Am I?

I am the word's worst couponer. (Is couponer even a word?). I know there must be something I'm missing, something I'm not doing, but my efforts to save money usually end up swirling down the drain.

Why? I've tried to figure that out for years. The allure of big box stores has alluded me. We have little storage space, no pantry, no extra freezer, limited shelving or closets in our 1940s Cape. There's nowhere to put a package of 40 paper towels or an industrial size box of oatmeal. Once I bought a huge bottle of aspirin only to see it expired in two months. People around the house got tired of the gargantuan jars of pickles or peanut butter before we got close to finishing them.

I've attempted testing out our local grocery stores to see which one will save me the most money. I feel like I'm dating. Stop & Shop and I will spend some time together, until they let me down and I break it off and run back to Big Y. Or I get adventurous with Price Chopper but quickly disillusioned. Aldi and Price Rite just don't have the whole package. I can't find everything I'm looking for. And Wal-Mart continues to let me down with sub-par quality.

Every time I think of "playing the field" and hitting each of these stores up for their individual best deals, I get exhausted. With the price of gas being what it is, how is that saving money? And what about my sanity?

Coupons get me every time. Maybe it's subconscious. Maybe I've convinced myself that I just don't know how to use them properly, because despite various systems I've attempted, I consistently experience a big FAIL. I'll put them in envelopes, separated by category. Then when I go looking, I don't have one for what I really need. Or I'll see the deal at the store for a better similar product that actually saves me more money. Sometimes I'll actually find a coupon I can use and remind myself over and over to bring it with me...only to somehow leave it at home at the last minute. I've even managed to lose coupons in the store before I can pay. Or I'll finally remember one and it will have expired two days before.

Some of this is definitely related to me wanting what I like rather than wanting a good deal. I've always been impressed by people who thrive off the thrill of the hunt more than anything. Who cares if the mouthwash they bought tastes like gasoline, or they never really eat avocados? It was a steal! I look at coupons and think, "But I don't LIKE that product. Why do I want to save money on it?" This especially happens with those darned Entertainment Books the kids are always selling. We buy one every year and it just sits there. I flip through the pages and try to justify: Who cares about a free McDonalds sandwich if I have to buy fries and a drink? Why not just get a value meal? I don't want just the sandwich. I'm hungry! Or: Most of these restaurants are 20 miles away and I've never heard of them. Why do I want to drive all the way there just to find out they're terrible?

Recently we had a member of a moms group I attend share a very humbling experience about her family getting into debt big-time and how they got out of it. She was phenomenal. I felt inspired. I kept thinking about her reminding us that all of the little things do add up, whether it's saving or spending. With starting a new business and me taking a break from freelancing for a bit with the baby, finances are a challenge. Down deep I know I'll never be an extreme couponer, but I know I could save more money. So I've tried taking little steps. I've tried to put more thought into things.

Saturday for the first time I decided to take all three kids to the grocery store. This was a quick trip for items to get us through the next week while people are kindly still bringing us meals; stuff for lunches, milk and juice, etc. In my head I told myself to try to keep things under a certain dollar amount. I was going to pay with cash. I was going to master my finances rather than let them run away from me.

In the store I thought Anna and Ethan could be my "helpers," holding onto baskets while I put a few extra items under Chloe's stroller. I didn't know that Ethan would want to relinquish his job as helper after about 45 seconds.

"I'm soooo tired," he whined. "I need to put this down." His basket contained a total of one bag of chips. The store was a mass of people shopping for their Super Bowl parties. What was I thinking, coming on a Saturday afternoon? Everywhere we turned, people jostled us. My saving grace is that little Sweet Pea was sleeping blissfully. Ethan was in a state far from bliss. "I don't want to be here in this store," he kept whining. He sat down and refused to get up for a moment. He whined. He cried. He was mad that I bought Coke instead of Pepsi. Every time I headed for a different item he whined louder.

My head, carefully trying to calculate what I was spending, started to get jumbled. Ethan insisted on helping with the stroller and kept almost steering us into people. His basket continued to bash my legs. Meanwhile, I kept thinking, "Which would be cheaper? Should I get these cookies or try to make some?" while continually being interrupted by Ethan's cries. Every little bit adds up, I could hear my mom friend admonishing, punctuated by more of Ethan's complaining.

The longer we took, the more I began just throwing things into the baskets to get the heck out of there. In the checkout line (almost free!) the cashier gave me the total and I blanched. I was at least 20 dollars over where I wanted to be. I handed her my bank card, chagrined.

Our few moments of peace now that we were out of the store were interrupted when we realized a car had parked about three inches from Ethan's door and that he would need to climb in the other side.

"But I don't WANT to get in that side," he protested. "Nooooo, I don't LIKE that side!"

"Ethan, you're going to bash into those peoples' door. Please -- get over there now." More tears, more crying, more head pounding on my part. He stomped his feet and started to refuse. I used the "Do I need to call daddy and give him a bad report?" warning and he finally got in.

I leaned over to pick up bags from the pavement, and my phone fell out of the diaper bag I was using as a purse. My Galaxy S3 I've had only a year shattered onto the pavement. Completely unoperational.

Now I was the one crying, throwing bags with apparently too much food in them into the back of the car and shoving my broken phone into my purse. Had I really just thrown a couple hundred dollars down the drain? As I drove the tears kept coming, wondering how it was possible to fail so miserably. Was I possibly the world's worst at saving money? Would this ever get any better? I couldn't stop sniffling, even as I realized how pathetic I sounded.

At home we ate some Cadbury mini-eggs that I really shouldn't have spent money on. But they were good. I took a deep breath and realized I had to keep trying. That if there was anything I could learn from this, the experience wasn't wasted. There was nothing to do but get back on the proverbial horse. Somehow, I will get this. Or at least get better. The way I see things, I can't get much worse.

Saturday, February 1, 2014

Two Alarms, One Scared Kid

So far, adjustment to baby #3 in our household has gone as well as can be expected.

We've gotten one "But I'm sad I can't play football around the baby" (gee, who would that be from?) and an abundance of whiney-ness. Can't really complain there. Especially because Ethan had, at his own admission, a kind of rough week at school.

Monday, while I was still in the hospital, Dan was on kid-duty in the morning, of course. They were all running late so he told Ethan he had to get hot lunch. This deviates from the routine. Both kiddos only like hot lunch when it's pizza day, and it was decidedly not pizza day. There were tears when Dan dropped him off. Then (why oh why that day of all days) they had a darned fire drill. I couldn't believe it. He's dreaded the fire drill for months (ever since the last one), and then they set the thing off on his one day when everything is completely out of whack? Ethan was not pleased.

The next day Gramma picked him up at school and he came home announcing that "ten bad things happened at school today," but he wouldn't elaborate on what the ten were. I think one of them had to do with his teacher being gone for part of the day at meetings and having a substitute, another sad deviation from routine.

On a side note, when I heard Ethan talk about "ten bad things" I wanted to start giggling because it reminded me of childhood. I was a horrid big sister sometimes. I basically blackmailed my poor younger brother Nate with what I called "The Five Bad Things," which were minor indiscretions I'd caught him at (like saying the word "crap") that I'd dangle over his head whenever he was doing something I didn't like. Stop that or I'll tell mom and dad about The Five Bad Things, I'd say in an ominous voice, and he usually whipped right back into line. I know. I was terrible.

So then on Wednesday and Thursday Ethan started to talk about art. I probed deeper. Apparently his art teacher has instituted a new system to keep them quiet. She's rigged up something that includes lights that flash from green to yellow to red. When the red light goes off (whenever they're too loud) some kind of alarm goes off.

I can't think of a worse way to torment Ethan, this boy who runs away from the Simon game and can't stand the buzzer on Family Feud.

"Last week I hardly cut any lines, because I was looking at the light. It was changing to yellow and I knew the alarm would go off soon," he told me.

I could see the sad image in my head: the rest of the kids chatting and cutting, and Ethan, heart pounding, unable to focus on the task before him, casting glances every few seconds at the cursed light.

The other night he announced that to top things off, his teacher had said there would be another fire drill on Friday. I thought it was a good thing he was at least getting a heads-up, but Ethan didn't see it that way. Before bedtime, he started begging to stay home from school. "But I have a cough!" he kept saying. Then a few minutes later he'd start in with, "I don't want those alarms to go off. I don't want to go."

It's sad to see him like this. I know there are days when all kids dread going to school. The thing with Ethan is, he likes school and he likes work. He just doesn't know how to deal with the anxiety of something unanticipated like an alarm or a buzzer going off and catching him off guard.

I wrote to Ethan's teacher Friday morning to warn her about how he was feeling and to see if there was anything we could do to help him. She said she'd work on it and ask one of the special ed. teachers for advice. When I picked him up after school and asked him about his day, he seemed visibly relieved.

"It wasn't a fire drill, it was Code Red," he said. "No alarms. We just had to practice being vey quiet near the teacher's desk." Code Red drills were instituted after Newtown last year. The whole thing makes me a little sad, and I always wonder what they tell the kids as far as why they are practicing the drill. But to Ethan, obviously Code Red was a walk in the park compared to blaring, blinking alarms.

As for art?

"My teacher turned off the alarm," he said. "The lights still flash but it doesn't go off." Obviously, someone had talked to the art teacher. I asked him if he was able to focus on his work, and he said yes.

I thought of something I'd read by a fellow autism mamma blogger the other day, about teaching her child to advocate for herself. I thought about the fact that we haven't had that "talk" yet, about the ways he is different and what that means. We're getting closer to that point, but not yet. Still, I knew we could start planting the seeds.

"You know Ethan, if something bothering you or stressing you out at school, never be afraid to speak up," I told him. "The teachers are there to help you. They don't want you to sit there in fear and not be able to concentrate on your work."

As we drove home I wondered if this was an issue that would be harder to resolve if Ethan was removed from special ed. without the constant relationship with special ed. staff. I filed that away to use at another more unanswered question, as we take the steps toward making a decision.