What to Say and When to Say It

Last week I was at the park with Ethan, looking around for other moms I knew since it was a scheduled "park day" with our MOPS group. I was really eager to catch up with some of the friends I hadn't seen for much of the summer, but unfortunately even though the day was gorgeous, almost no one from MOPS was there, and the one mom I did see was held captive by her daughter on the other side of the playground.

So I started to look for other moms and started watching the other kiddos around me, thinking of how I might strike up a conversation. As I watched the kids who happened to be climbing up the rock wall, bolting over the bridges and balance beam, and hurling themselves down the roller slide, I right away noticed two things, 1) A lot of these kids were older, meaning maybe 8 or up and 2) Something about them seemed subtly different.

My "different" radar is always up, primarily because I'm always on a search for moms with whom I have something in common, and also, as I've written about before, sometimes I just can't explain the mystery of where all the special needs kids (and autism in particular) ARE, exactly.

I saw a boy with Down syndrome get on the slide in front of Ethan and push a toy truck down. Both he and Ethan enjoyed watching it go bumpity-bumpity-bump down the roller slide. In fact, they both were fascinated by the rollers on the slide. At one point I asked Ethan to say hi, which he did, and this boy threw me completely off guard by muttering something and then pushing Ethan in a kind of playful way with such force Ethan fell backwards off the platform. I knew this wasn't intentional, but after that I started watching Ethan more carefully since this boy obviously didn't know his own strength.

A moment later I saw his mom, worried creases in her forehead, watching as he cut ahead of Ethan on the slide and threw the truck down again, as Ethan was trying to reach for it. "No hon," she said warily. "What if the other boy wanted that truck?"

"It's okay," I reassured her, "my son loves to do that, too. He was reaching for the truck to throw it down. I was noticing the way the both enjoyed watching it go down and watching the rollers spin."

"Oh, okay." She seemed relieved, so I thought I'd try to make her feel even more at ease. "He's on the autism spectrum," I said.

"Oh." She was silent for a moment. Then, "I see more and more of those kids every year. I'm here with a support group for kids with apraxia. My son is 10...he's nonverbal."

We both stood there for a bit, not saying anything, thinking many things. The support group explained the "something different" I had noticed about the kids. It was speech (and perhaps they had other delays).

I was wondering if I should have said anything about Ethan. I am always wondering when, how, if I should say anything. Do I just let my boy be my boy and leave people with questions? Do I wait until he does something a little bit "off" or until someone tries to start a conversation with him and he doesn't really participate? Or do I just explain right off the bat to get it out of the way, which seems almost like a cowardly choice, as if I am apologizing for him.

Then in a flash I wanted to hit myself, because I realized I had compared my boy to her boy, talking about how they both liked the same things, and her boy is 10 years old. How must that have sounded? My insides cringed, even though I had just innocently been trying to make a connection, to show her I understood.

We started talking a little. She immediately launched into complaints about how the school system had let her down, how Massachusetts has infinitely better services than Connecticut, how her son exhausted her sometimes.

I attempted to commiserate, to lend a listening ear, to nod in agreement. I spoke a little about Ethan and preschool coming up. She briefly acknolwedged and then continued in her complaints. I began to feel as if I were sinking.

After a few minutes, she decided to take her son for a walk. They were gone walking down a path into the woods before I had a chance to say anything else. All I could feel was sad. I felt her frustration...isolation...disappointment. I felt her hopelessness. At the same time, I wondered how many times she drove people away, because she was lost in her pain and negativity? It felt wrong to judge, yet I was almost, irritated. Is this how all support groups are? I wondered. People venting non-stop about how the world is conspiring against them and their kids? If so, I'm not sure if I want to be there. Some venting is most certainly needed and that is the place to do it. But I can't stay in that place mentally or I won't be able to get out of bed in the morning.

I thought about myself, eight years from now, when Ethan is 10. Would I be that jaded? I prayed not. I wondered if by then I'd have a better handle on how to explain who he is. This is a complicated dance, this autism thing, this special needs thing. There is this balance between educating others and just letting our kids be who they are. There is accepting them unconditionally while doing everything we can to help them thrive in this world. There is taking the time to grieve and vent yet finding ways to live with hope, with light still in our eyes. That's what troubles me about the woman at the park. The light appeared to have gone out of her eyes.

Conversations with my son

Ethan has come a long way, when it comes to language. He's still most certainly behind in speech and has a long way to go, but I'm proud of how far he's come. I remember right at the beginning, when we first started therapy nine months ago, one of his therapists commenting on how "he is just starting to understand that his words get him things." Motivation is so key. After that first step of using words to get needs met, one of the next steps he's been encouraged to try is commenting on his environment. Ethan most certainly does this now, in his own unconventional way, about things that the rest of us might not comment on.

"Hi button!" he yells when we drive past intersections with a walk button. He likes to point out shadows everywhere. He searches for shapes..."Triangle? Triangle?" he keeps calling in his bedroom as he opens the door. It took me a bit to realize that's because the light from the hallway falls through the slit in the open door and creates a triangle beam across the floor in his room.

He tends to get things jumbled and it makes me smile. He was calling his beloved storm drains water drains so we tried to remind him that they are actually STORM, not water drains. At the same time we had a couple of storms come up and so we were teaching about thunderstorms. This has led to him sometimes asking about storm drains -- when what he means is storms. We were teaching about coughs and coffee (thanks to my affinity for Dunkin' Donuts) and now sometimes he'll cough and say "Cough-e!"

He is trying to figure out the sun, the shadows throughout the day, and really the phases of the day, and how that all plays in with the weather, too. We also like to comment about the neighbors, who live right up close next door. Hence, our conversation this morning:

Ethan (pointing to the window): Sun gone!"
Me: No, it's not gone, it's just not up all the way yet.
Ethan: Sun clouds?
Me: Not behind the clouds, it's coming.
Ethan: Storm drain come?
Me: No storms are coming. The storms and rain are gone today. We had a thunderstorm at the camp, remember? Thunder, boom! And lightning and rain?
Ethan: Boom! No storm. (Looking out window, seeing some beams of sun coming: Sun hot!
Me: A little bit hot. Summer is still here but it's almost done.
Ethan: Trees. Leaves. (Because I told him the leaves go away when fall comes).
Me: Yes, they're still here.
Ethan (looking at our neighbors, Anna and John's house): Mr. John outside?
Me: No, he's inside.
Ethan: Mr. John TV? (We like to guess what he's doing in his house).
Me: Maybe...
Ethan: Mr. John oatmeal?
Me: Could be...
Ethan: Mr. John's fan off (Ethan always likes to check to see if the fan built into their garage is either on or off.)

Of course, as his mom I can understand where Ethan is going with his thoughts so much better than almost anyone else (although Dan tries his best, my mom is pretty good, and I have to say, Anna is pretty darned perceptive for her age). Most of his phrases are two words and often they are scripted. He learns one way to say something, and that's the way he says it. He tends to say things without looking at people, as if he's just tossing stuff out into the atmosphere. But he's trying, and he's talking.

I need to remember this, especially when Anna talks so much I just want her to take a breath and give me some quiet. This is no small feat. This is not something that should be taken lightly. This is not something I will ever take for granted.

Carousel

We were at the Buckland Hills mall, heading toward the food court, and my heart was actually pounding with excitement. Last year we'd eaten up there and it had been a disaster. For whatever reason, Ethan had a meltdown. I had known better than to even attempt the Merry-Go-Round. But after our experience at the Topsham Fair up in Maine, I knew Ethan would want to ride.

As we were waiting to grab some pizza slices first I saw a group of adults shuffle by at various paces with their caregivers. They were obviously from a group home. One or two were being pushed in wheelchairs. Several appeared to have Down syndrome. All were in their twenties or thirties at least and had that slightly disheveled look, the look that they had been dressed by someone else, or didn't care, really, how they looked.

We sat down with our food (a real chair for Ethan this time, no high chair holding him captive) and I watched one of the women with Down syndrome, plodding ahead towards another table. Her eyes revealed nothing about what she was thinking. In a flash I saw her as a baby, a newborn, with a mom perhaps cradling her, worried for her. I saw her as a little girl in a cute dress, smiling big smiles.

On the ride Ethan sat patiently waiting for everyone to get on. His eyes were so bright and his smile was so big. He didn't try to squirm off, he just enjoyed every single second of the five minutes we went around and around, as his elephant bobbed up and down. I wished I had my camera with me, but I'll never forget the sparkle that was in his eyes as he rode the carousel for the first time.

Thank you, my mind was whispering as we walked away. To God? Ethan? Autism? I'm not sure. What I meant was, thank you for helping me see people as they really are at the core, as they were, as they still are inside. Thank you for the gift of learning to appreciate the smallest of victories. Thank you for the sweetness that resides in the simple, joyful moments that, in another life, I might have missed.

Mom as Therapist

We were at my niece's second birthday party last week and were watching her open her presents. When she got to the art toy and crayons and paper we'd gotten her, Haddie eagerly worked on opening the crayons and quickly selecting one. She began coloring with red and then purple, and the first thing I noticed was how she was holding the crayon. "That's a great grasp she has on that," I remarked to my sister-in-law. As soon as I said it, I knew who I sounded like: an occupational therapist.

After observing, listening, and taking mental notes during Ethan's therapy appointments for the better part of a year, I'm realizing that I've picked up more about occupational, speech, and ABA therapy than I'd ever imagined (I guess you could add Floortime to the mix as well, since I've studied much on that on my own and applied it with Ethan when I can). I see things not just as a mom but often as a therapist. And sometimes it's easy to forgot to take the therapy lenses off.

Sometimes I wish I could explain this better to Dan. I find myself, the way any mom sometimes does with her husband when she's with her kids all day and he is not, having to pull the reins back so that I'm not lecturing on exactly how to interact with Ethan. I know it's so easy for him to perceive me as just assuming he doesn't know what he's doing and that I always know best. I'll admit, yeah, sometimes I do feel I know best. But other times it's really just that I'm mired in all of the knowledge I've picked up that is floating around up there, knowlege that Dan couldn't have possibly acquired unless he'd been there, 10+ hours a week, with 5-7 therapists, over the course of months and months.

It's only by watching day in and day out, I want to say, that I know that Haddie was using a very mature grasp for her age, that she would score well ahead of her age range on that section of the Peabody Assement, and that the first steps to assessing pre-writing skills are your child's ability to imitate a circle, horizontal, then vertical line, and then a cross.

I want to say that thanks to Ethan's therapy, I've learned about the beauty of first/then (i.e. "first trace the line, then you can have a snack or "first eat your beans, then you can have more milk"). I know that to entice Ethan into trying a new and challenging task, to try introducing it in small steps. Try pairing it with a prefered activity, like when we alternate building blocks (which he hates) with playing with the top (which he loves). Or invent a song. Thanks to therapy I've learned that Ethan is an auditory (aural) learner and if you can't get his attention, make an interesting sound and it works like a charm. I've learned about holding toys up near my face to encourage eye contact, how to push him without pushing too hard, being playfully obstructive to get him to interact, and following his lead rather than trying to force my agenda all of the time.

I don't say all of these things to demonstrate how wonderful and perceptive I am...it's more that I write this with a sense of deep gratitude. Just by the necessity of my needing to being there to observe, I've been given many, many tools to help my son, tools that I can use well past when his home therapy is complete in a few months.

Thanks to therapy I now know that gestures are so much more important than words, that communication comes in many forms, and that play is vitally, incredibly, wonderfully important. And I've learned that sometimes I have to take that therapy hat off and just be a mom...to give that hug, to kiss away those tears, to tuck in at night and wish sweet dreams, before all of the learning starts again.

Trusting, Step 1

I just wanted to go to bed. I wanted to go to bed, but there was Anna, telling me that she couldn't find Lamby, even though I gave her Lamby when I tucked her in. As I searched yet again Ethan looked on with curious big eyes from his crib. I noticed (darn!) that his diaper was off again. I thought we had kicked that habit. Then I heard him saying, "Poop crib." He meant pee, but I got the point. The sheets were wet. Darn. And he had pushed the crib across the room so he could reach the drawers of Anna's bureau and open and close them. He'd also pulled down the cheap Wal-Mart shade and made it rip more than it was already ripped.

"RRRRrrrrghhh," I growled, nearly literally, furiously snapping on the light and looking for fresh sheets. I plopped Ethan on the bed with Anna and began throwing all of the pee-scented stuff in a pile. All I could think was I thought he was finally done with stripping off his diaper and I'm sick of the drawer opening and closing and will we ever get him in a bed without a tent and what would happen if we tried it? and really, most of all, it was you mean, we always have to deal with this? This isn't going to go away, is it? Is it? All of this while I put on the new sheets and gathered up the old.

I always hear these stories about naive people. They're the types who had children diagnosed with autism and thought if they just worked really hard, they could make it all go away. I heard a woman talking on the radio a few months ago. "At first, I thought he would be cured by the time he entered kindergarten," she was saying. "Yet here we are now, and he's eight and still non-verbal."

I hear these stories and I wish I were one of those people. But because I've seen autism in the form of my brother and of many, many other young adults when he was at Boston Higashi School, I have a picture in my head that I can't shake. I don't want to say it's a bad picture...in many ways it's a beautiful picture, full of hope, but one can only see it that way if one is able to let go of the usual dreams.

That is a process, of course, and one I'm not sure how to approach. My mind is often a swirling mixture of pessimism and faith, hope and realism. I don't want to let him down by not dreaming big enough. I don't want to let myself down by setting my sights high for him and end up bitterly disappointed. I don't want to leave my faith out of the equation and forget the vital part that faith, prayer, and trust play...but simultaneously don't want to view my belief in God as some sort of rabbit's foot for delivering Ethan from autism ("if I just believe hard enough, he'll be healed, like those healings in the Gospels, your faith has made you well...").

This is what's simmering below the surface, when I'm losing my temper over relatively small things and fighting off hot tears.

While I put the new sheets on and got the mattress back in the crib, I kept thinking about a quote from an article I'd read about a year ago. A woman had mentioned something a wise, older Christian friend had said to her about God and trust. "What it all comes down to, really," she'd said, "is whether or not we believe God has our best interests at heart."

The line kept running though my head, as Anna and Ethan began jumping on the bed even though it was nearly nine o'clock.

Do I believe God has my best interests at heart?

Even if Ethan never overcomes autism? Even if some of our original dreams for him have to be exchanged for different ones? Even if it seems as if no one else has around me has to face this kind of heartache and it's just not fair? Even if?

Answering yes is the first step to lifting those burdens off my back. Maybe it's the first step to being able to modify my dreams for him without feeling as if my heart is ripping out...yet still have dreams, to still very much believe for him.

Anna and Ethan were bouncing, laughing. She'd drop and plop her face into the mattress, and he'd do the same. Again and again and again. Brother and sister, playing as they don't do all that often. Ethan, imitating perfectly, as he could not do even just six months ago.

After a few minutes I calmed them down and tucked them in and then yeah, I cried for a little bit. But the words kept coming back to me: Does God have my best interests, Ethan's best interests, at heart? There was a sweet peace there, because despite all of my other raging thoughts, in the months since Ethan was diagnosed I am somehow always able to answer Yes. And mean it.

Now comes the trusting part.

Fish, Resurrected

About six weeks ago Dan came home from an excursion with the kids. I thought they were going to the local hobby store, but they showed up proudly hauling in a fish tank, fish supplies, and of course, a Betta fish. Anna named her Juliet and secretly my heart sank. We'd never owned a pet besides Zeke the cat. We'd never owned, I should say, an animal that could likely die in less than a few months and break my little girl's heart.

From the beginning I fretted. Were we feeding her enough or too much? Was she really sleeping or was she somehow already dead when I checked her late at night before heading to bed? Juliet was a happy little thing for about a month, until the incident that involved Anna overfeeding her and then leaving the top off the fish food and Ethan dumping half the container of food in her tank, which led to me frantically putting Juliet in a new bowl of water and then the next day putting her back in the tank with another gallon of new water. After that Juliet stopped swimming so much and started hanging out near the top of the water all of the time. According to the person at the pet store, and people online, Bettas can shock easily if you change all of their water at once. They can even die.

This Tuesday morning came -- Dan was flying to Tennessee and his mom happened to be flying at the same time down to Bethesda in Maryland for a scan to make sure cancer hasn't tried to flare up again in her body. The radio was blaring horrific news about a shooting not much more than five miles down the road, another episode of workplace violence, with multiple victims. And Juliet wouldn't eat. I was frantically getting the kids ready so we could drop off Anna at VBS, and Juliet appeared to be barely moving. I thought, "Do I tell Anna and upset her right before VBS? But what if she comes home and Juliet has died already?" I decided I had to tell her. So we had a little talk that involved tears on both ends. My heart was breaking. I hated just dropping her off after that.

Driving home, I kept fighting the tears. I tried choking them down because Juliet is just a fish, after all, but then realized I wasn't crying just for Juliet. I was crying because people had left their homes for work that morning like any other day but weren't ever coming home. I was crying because Anna didn't know what cancer was and I didn't ever want to have to tell her her grammy was dying from it. I was crying because I didn't want anything to cause my daughter pain, I didn't want her to know how fragile life is, but at the same time knew an inevitable part of her growing up would be realizing these things, bit by bit, one little painful revelation at the time.

And so I cried, and I peeked at Juliet, who amazingly had began to perk up and even started swimming around a little bit. She wasn't her old self, but she wasn't dead. After I got past my emotional moment, I began to feel a little foolish, as far as the fish was concerned. What was it that Mark Twain once said? "The rumors of my death have been greatly exaggerated." By the time Anna got home, I felt sorry for upsetting her needlessly.

"She wiggled at me!" yelled Anna, watching her. "Maybe she's feeling better."

"She might be," I said cautiously. "She just might be."

That was three days ago, and Juliet is still with us. I have no idea if she will make it past the week or even the next few days. She's still not eating much. But, we'll get to that when we get to that. Whenever that is.

Dan's mom came back from Maryland with a clean bill of health. She's done this for two years and will need to return next year. I've wanted to ask her but never would because it's just too personal, but I wonder, how do you live with the waiting? Or maybe the question is, how do you LIVE, instead of waiting?

That's what I realized, over these past few days. I worried for six weeks the that little thing would die. I've wondered for years how I would ever talk about anyone's death or illness with my daughter. I've dreaded the inevitable loss of innocence. These things will happen, but I've spent a lot of time living everywhere but now. What good does it do anyone to live anywhere else?

"Look at how beautiful she is," I said to Anna the other day as we sat, just watching her. We giggled at her little O-shaped fish mouth and beady eyes. "Let's just enjoy her," I urged. "No matter how long she ends up living with us, let's just enjoy her now."

And so we did. So we are.

Grasping Self-Discipline

If I listen to what my heart, my head, God, is telling me, I may not be posting on this blog quite as often, or scouring other internet sites, as often for awhile. The gentle urging has been there for some time. The habits have slowly snowballed over the years. In just about every area of my life -- what I eat, how I keep fit, how I accomplish what I need to do for the day, and most of all, what I think about, I have a complete lack of discpline.

Maybe complete is too strong of a word. I do what I need to do. I get by. I'm obviously disciplined in keeping a schedule and making sure the house is relatively organized. I do my best to make time for the kids and a little extra time for Ethan. I don't mean to sound as if I'm making a choice because I'm feeling condemned that I'm not being the perfect wife and mother. No, this is for me. Well, for everyone indirectly, but for me, first and foremost.

The other day one of Ethan's therapists was talking about playing blocks with Ethan, which is one of his least favorite activities. He doesn't care for open-ended activities that require a lot of imagination and don't involve much cause and effect. One of the other therapists had been using a timer, but Jessica was concerned that we would start to use that too much and make Ethan reliant on the timer going off to stop, because the timer's not real life. "I want him to be able to sit with that uncomfortable feeling for a little while, and keep going," she said. I knew what she meant. Oh, how I knew what she meant.

For me, sitting with that uncomfortable feeling means saying no to snacking when I'm really not hungry but just want to do something mindless in the evening, because hey, I love food. Sitting with discomfort could mean getting on that elliptical or walking outside just a little bit longer, letting myself really break a sweat, rather than backing down before I've really pushed myself. Sitting with the uncomfortable means letting feelings and thoughts come but not pouncing on them, but refusing to travel down paths all of the time that will drag me down.

I've realized recently that not once in my life have I ever seriously attempted keeping my thoughts in check. I've always heard people say, "Well, such-and-such could happen, but I'm not even going to think about that right now," and I'd think, "Really? How do you not?" I am the type of person who finds a new mole and in 10 seconds has envisioned my funeral and my motherless children, has a clear picture in my mind and actually could get tears in my eyes from the picture. In ten seconds. Really.

I've gotten into lazy habits, and originally this was not my fault. This was what was modeled for me. Both of my parents in their own ways like to immediately catastrophize everything, out loud for us kids to hear. I can think of very few family members, growing up, who modeled much self-control, and those who did were labeled as "snobbish" for their emotional restraint. Instead, thoughts were blown into crazy, scary scenarios, and every emotion felt was often acted upon...which meant we had a nice level of openness and honestly, but also too many times where people flew off the handle into rage, spewed out cutting and toxic words, or dissolved into a pit of despair.

But that was then. I'm a big girl now and the time has past come for me to take a bit of a different path. Ethan has shown me that. You see, I am learning in a very painful way that Ethan doesn't allow me the luxury of chasing down rabbit trails. I can't run after every emotion and whim. I have to stay on an even keel.

This weekend is a good example. We went to Nate's house and Ethan wanted to play with musical toys the whole time, until he wanted to goof off a bit with light switches or the storm drain outside. Dan was playing a board game with Nate, Anna wanted me to play with her, Christina and my nephews were there, and I could feel the haze growing around me. In my head, I heard, Why can't he just play with his sisters and cousins? Look what the little boys are doing and how curious they are about their world. Why can't Ethan be like that? What would it be like if he were typical, to see all the cousins playing together? The pain started crushing my chest. I felt tears in my eyes. Worst of all, I could feel myself no longer being present. I was losing the moment and all the good things about it. I hated that, but when thoughts and feelings come to me, because of my lack of practice, I feel like I have to jump in the wave and ride wherever it goes.

I was talking to Dan about it last night. "What do you do?" I asked. "What do you do when those kind of thoughts come to you?"

"I just know I can't go there all the time," he said. "So I don't let myself...sometimes it happens, but I stop myself from constantly wishing and doing the what ifs.'"

And that's when I realized that Dan and other people in this world who don't live feeling completely downtrodden aren't just that way because they were born with a sunnier disposition. They're making choices sometimes. They are choosing what to dwell on and where to focus their energies. They're living in the now and finding places to laugh, places to cherish. I feel as if this shouldn't be news to me, but in some ways it is.

Hearing that made me realize that lately some of my tears have come not so much from sadness but from feeling that making the right choices is just too darned hard. I don't want to do it. Yet if I don't, not only I but my family will suffer.

The question is -- how to become more self-discplined with grace leading the way, rather than by my own human striving? I know now that I just can't do this on my own. I'm going to need some help from His hand of strength. Maybe just knowing that is an important first step.