Sunday, May 30, 2010


We always attend church the second service on Sunday mornings, which is very packed and full of kids of all ages. About a year ago I'd notice some kids with their parents in the back during worship, waving flags and dancing about, clapping their hands, all of that stuff in a nice out-of-the-way space that wasn't as confined as being squished in the rows of seats. About then I noticed the youngest one was a little boy a month older than Ethan (he would've been about 19 months) and couldn't fathom Ethan doing that, standing in one place holding a flag. During worship (which is rather non-traditional, to say the least) he would often want to be held the whole time, burying his head in my shoulder. I think it was sensory overload.

Fast-forward to three weeks ago. We got to church late and there were absolutely no seats. We happened to be standing near the back "kids" area looking for some when suddenly I noticed Ethan taking great interest in the kids and the flags. Anna saw some of her girlie friends and was interested, too. So while Dan found a couple of seats for he and I to sit in for the sermon, I got flags for the kids and for the first time, we worshipped in the back together. Anna held hands with her friends and danced in circles (kind of more playing than worshipping, but at least she's participating) while Ethan waved his flag and clapped. He didn't try to run down the aisles. He clapped his hands when the music swelled. He moved and swayed at those same parts that move me. Music is such a big part of me and I can see that it overtakes him similarly; Dan and Anna are not affected in the same way.

And so for the past three weeks we've been in the back...Anna and Hannah and Chloe and Jordan and Taylor and Joshua...and Ethan. He went back there in his own time, but he's doing it! I love to whisper in his ear about the different instruments, and about God. The God stuff, I don't know what he understands -- but perhaps there is a part of him that does understand.

Lately Ethan's been doing a lot of hugging. He's always liked hugs but usually from mom. I love giving him hugs, and usually he asks for hugs just because he wants a hug. Sometimes there is a sensory component -- it's more that he wants a tight squeeze, really -- and sometimes it's a little repetitive (like he gets "stuck" and doesn't know what to do except say, "hug?"). But usually it's just straight from that little heart of his.

Today during worship as I was holding him for a bit and singing he kept looking at Anna and her friends and going "Anna! Hug!" I let him down and he gave her a quick one and once I picked him back up he started asking again. I wondered if this was some sort of game or repetitive thing so I told him to wait for awhile and then he could give her another one. After a few minutes, he was looking longingly and asking again, so I let him go over again.

Ethan gave Anna the biggest and longest hug I'd ever seen, in the midst of the music. He stopped her dance and just wrapped his arms around her. The funny thing was that he didn't let go, for at least two minutes. Meanwhile Anna's little friends stood all around him, looking at him lovingly, smoothing his sweaty curls, smiling sweetly, as he hugged his sister. All around, people worshipped. Love swirled around that place, in a way that I couldn't quite describe but found to be wonderfully sweet.

Wednesday, May 26, 2010

The Return of the Ponies

We got Anna her first My Little Pony when she was about 2 1/2. I'd remembered playing with them as a kid and was glad they'd made a resurgence along with Strawberry Shortcake, Care Bears, and other 80's toys (those toy marketers are shrewed, tapping into parents' nostalgia). At first she didn't care much about the ponies but about a year later suddenly she fell for them, and hard. Over the next two years, we had two MLP-themed birthday parties and built up quite a collection (about 30-40, with some ordered through eBay since we'd gotten all of the ones sold in stores). In fact, Anna played with little else, which made birthday and Christmas gifts very easy.

After awhile about maybe six months ago I noticed the ponies weren't coming out as often. Anna had moved on to Barbies and even more often, craft projects of all kinds. While I knew this was just part of life, I couldn't help but feel a little sad. I thought about the Velveteen Rabbit, and Toy Story 2. There was a part in that movie that made both Dan and I cry...when the little girl grows up and her toys get shoved and forgotten under the bed, gathering dust.

On Sunday I asked Anna if she was done playing with ponies, and she said yes, so I packed them in a plastic container but didn't pack them away. The girl is only almost six, after all, and famously fickle, as all six-year-olds can be. Still, I packed up the ponies with a heavy heart, a hundred moments over the past three years passing through my mind -- the ponies adorned with ribbons and jewelry; traveling with us on vacation; outside on the swingset. I could see Anna in her curls and sweet little voice making them talk. I managed not to shed a tear, because I know there will be many more moments like this.

But this morning Anna asked where her ponies were. "Why?" I asked. "Because I want to play with them," she replied. The next thing I knew, in the 10 minutes before school she had taken them all out and put them in a very long straight line near the front door, waiting for her return. Just like the "old" days.

"Bye ponies!" she called as we headed out for school. I smiled inside, glad to have a little more time before my girl barrels toward growing up.

Sunday, May 23, 2010

Bounce Town

Recently a friend mentioned a special event going on today for kids with ASD and familes at a new local playplace that's basically a bunch of inflatable houses and slides. I knew getting there on a Sunday morning after church might be tricky, but after jiggling some things around we made it over there at about 9:30. I hadn't been there before, but we will be coming back.

The kids had a blast!

What a fun morning we ended up having. There was the Princess bounce house, the Super Man slide and the firetruck Slide. There was the whale slide and the cool obstacle course bounce area that was really for bigger kids but that Ethan managed to tackle right alongside Anna. The whole thing was free, and there were free refreshments and an arts and crafts room that Anna made sure she most certainly took advantage of.

Then there were the families and kids. I have not been around so many people with autism since going to see Andy at Higashi School. Every time I have the opportunity, I feel a sense of peace. It's rather hard to describe, but kind of as if I want to take a deep breath and say, "Ahhh. Yes, they understand."

There were kids barely on the autism spectrum and some who were rather severe. Many just blended in with all of the "typical" siblings running around. Some walked on their toes and some made interesting sounds. Several were bothered by the noise of the fans running the inflatable houses and I saw many pulling their parents by their hands. All, at one point or another though, had moments of sheer joy as they slid, jumped and bounced.

There was a rather strange moment when we were back getting snacks as I observed a family with a little boy who reminded me of Andy in unfamiliar places. He was about 8 years old and seemed stressed. I'd seen him out having fun but apparently he'd had enough. I wasn't really thinking as much about the boy as the dad, though, when I heard him telling someone he had graduated in 1992. This guy was balding. He was headed toward middle age, for sure. That's when I graduated, I wanted to say, but I was preoccupied thinking, When did we get so old?

I wanted to get to know parents but didn't know how to strike up much of a conversation in the midst of all of the noise and excitement. Sometimes I'd hear snippets of conversation. One guy was complaining about spending money on an outside evaluation on his child and about the school system skimping on therapies. Someone else mentioned Dr. Milanese, the developmental pediatrician who first evaluated Ethan. Ah, they speak my language, I was thinking, but didn't know how to just jump in. I also saw a woman I vaguely recognized from church and wondered why she was there. I never got over to her, so I don't know.

Ethan and Anna played for nearly two hours straight. They were hot and sweaty and red and thirsty, the way kids should be. We had to coax Ethan a little bit to try different slides, but he did, and he did just fine.

Over on the big kid obstacle course, Ethan kept working to hold his own. There was the huge rock-climbing type wall that I didn't think he'd make it up. It was twice the size as the one on our swingset. The first time, I was going to go in with him, but one of the staff guys said, "Let's see how he does first," and he was right. Why not let him try? So we watched as Ethan worked to climb up, up, up, one foot and one hand after the other, until he'd made it to the top. Anna cheered him on.

The next time he wanted to go on that one, there was a boy about nine just ahead of Ethan. I'm pretty sure he had autism. He took it upon himself to show Ethan the ropes and talk him through the whole course. I went through too that time, and hung back, listening.

"Now go up like this," he was telling Ethan. I'm not sure how much Ethan was listening, but the boy kept narrating. "Hold onto this handle...that's it. Now go here." At one point I accidentally slid into the boy and apologized. He thought for a second...I could see him looking for the appropriate response. "It's okay," he said, and shrugged. He continued to instruct Ethan. I wondered how many typical nine-year-olds would have even cared. They probably would have knocked him down and left him in the dust. Yet this sweet kid sat perched at the top of the climbing wall, patiently waiting for Ethan to make it to the top. "Great job," I said to both of them, and off he went down the slide.

The smiles. I think that was the best part -- typical and not-so-typical kids having very typical fun; and parents who momentarily set down their burdens to cheer their kids on, talk with each other, and yes, smile.

Thursday, May 20, 2010

What Happened While Browsing for Books

Last night I went out to do a bunch of shopping errands. One was for Dan's friend (since childhood) Steve and his wife Beth, who are having their first child soon. I decided to forgo their mile-long Babies R Us registry list and do something different. My last-minute inspiration was to get them a little collection of classic baby/child books, or books that our kids have loved. Beth's a speech pathologist. Steve's way smart, like Dan. I thought they'd go for that kind of thing.

So there I was in the children's section of Barnes & Noble, thinking about Steve and Dan and how they've always joked about having this friendly competition going. If Dan got a new car, Steve wanted one. Then Steve would get a computer and Dan would drool with envy. It was all in fun but there seemed to be something real to it, too, maybe dating to back in high school when they were competitive together in the gifted and talented program and AP classes.

Awhile back Dan told me that Steve and Beth had found out they were having a boy. After a moment in a silent flash I saw in my mind's eye a few years down the road, Steve and this little boy, doing dad and son things, and maybe Dan watching that and comparing it to his relationship with his boy.

The thought brought tears to my eyes. I don't think either guy would ever throw their offspring into this silly competition game, but comparison is another story. My heart hurt thinking of Dan's heart hurting, or things he might be missing.

When I'm in my more punchy moods, I think, Well, wait a minute here. Dan's as far from a jock or outdoorsy person as you can get. I don't think he's going to be crestfallen if his son can't captain the football team, for example (that would be Steve) or if they're not fishing together. Dan's a computer geek, and Ethan already is showing an interest in computers and video games. There's a very good chance there will be some things for them to bond over.

But some of this was still running around in my head at Barnes & Noble, while I was searching the shelves for Goodnight Moon and listening to quite possibly the most depressing song in the world on their overhead music system.

I felt as if there were two voices actually arguing in my mind. One was trying to pull me down, as I looked at books on trucks and trains and thought about their new little one. For a split second I saw Ethan's sweet smile and big brown eyes and ached thinking of him being robbed of anything. There was a mama bear love there that made me furious that things might be harder for him, that he might miss out on something. There was a sadness about him being different along with a sadness with myself for being sad, as if I wasn't truly accepting who he is.

The other voice was telling me to put on the brakes. It was almost like the voice of David, in the Psalms. Why are you so downcast, my soul? That voice wondered why I was drifting into sorrow over the books, lamenting something not completely related to the pile I was holding in my hand. Ethan likes Goodnight Moon! He loves 5 Little Monkeys! He enjoys Thomas the train and firetrucks. He's not quite the same but he's not my brother who never had a little boy interest. You aren't sad over now; you're trying to become sad over what may or may not be.

The voices fought it out for a moment, while the melancholy melody washed over me. One lone tear welled up but didn't fall. Then I noticed on the back wall in the picture book section that they had displayed The Little Engine That Could.

I think I can I think I can, I thought, knowing I needed to pick it up. That would be the last book in the collection.

I think I can. I think I can. That's what the little engine had told herself as she climbed up the mountain. The song ended and my eyes were dry. I paid for my books and headed out into the misty night, ready to drive home.

Wednesday, May 19, 2010

Out of the Funk, I Think

I think Ethan is finding his way out of the rough phase that started back at the ended up March. I had been warned about this. No kid (typical or not) makes solid, non-stop progress. There are bumps in the road and sometimes steps back. The rate of progress, the ebb and flow, is not nearly as important as the fact that progress is happening.

The weird thing is that I can't exactly figure out what put Ethan into a funk or what exactly has caused him to come out of it. And I can't even completely explain what the "funk" is. It wasn't just bad behavior; there was more to it than that. I guess I'd sum it up as: 1) Major distractability/lack of focus 2) More stress which led to more sensory seeking behaviors which then led to an increase in his fixations on doors, lights, etc. 3) Less flexibility 4) Some oral issues (mainly drooling like I've not seen since he was a baby).

I wracked my brain trying to figure out how to help him during this phase. There were numbers of conversations with Dan, other family members, therapists. We tried to pinpoint just what was going on...was it his diet? The change in seasons and possibly allergies or an undiagnosed inner ear problem? Teething at this late age? The many trips to relatives' houses and a vacation? Fatigue with six months of therapy?

I walked away from this with a whole lot of ideas but an uncertainty about which to apply, when, or really how. Diet? We cut down on sugar, juice, junk in general, and have tried to stay from artificial flavorings/colors, but haven't gone crazy overboard. Sensory diet? I was doing the brushing on his skin and the joint compressions, and also letting him jump on the trampoline. We also were going to work on having him carry a weighted backpack or push heavy objects around, but hadn't really done that yet. I couldn't really tell if the brushing, compressions, and jumping really helped him. Allergy season seems to be winding down for most people I know; who knows if that made a difference? We had our first relaxing weekend at home in a long time...did that help ease the stress? How I wish I knew!

There is one thing that I believe has helped. At the beginning of each day I tell Ethan which day it is and what everyone is doing ("Anna's going to school, daddy's going to work," etc.). I remind him again before every transition, and he will repeat things back to me. Just talking about the schedule does seem to make a difference. And having all of the therapists be a bit stricter with him about sticking with an activity, or two or three, before running to mom, has helped, too.

The other thing everyone has noticed in the past week is that Ethan has started to do more running, laughing and yelling around the house on his own. He'll get excited and yell "Run, run, run!" as he runs into another room. Or he'll say "jump!" and start jumping on the couch. He's had a lot of these expressive moments that aren't really inappropriate, more just bundle-of-energy-little-boy stuff. Yesterday during his OT appointment Sara noticed he wasn't as sensory seeking, and we all wondered aloud if maybe these bursts of energy and expression are Ethan's way of figuring out how to regulate his senses a bit on his own. That just might have something to do with it.

I know we are going to run into times like this again and again. But what I've learned from this first one is that there aren't always clear answers or quick solutions. Sometimes a really simple solution can make a big difference. And sometimes patience is the only answer. I don't have to do everything! There will be times when issues just resolve on their own, with time. Of course, sometimes waiting is the hardest thing to do.

Tuesday, May 18, 2010

There's a Frog in Our Living Room

So lately Ethan has been showing some signs of interest in the potty. It began with a love for flushing; getting to throw bits of toilet paper in and watch them disappear. Then the words started coming...first "potty" and "flush," then "toilet paper" and "pee and poop," although I think he's still mixing up which is which.

He hates feeling wet and now nearly every time he pees or poops, he says "pants wet" and tries to take them off. Usually his pants aren't wet but it's his diaper (those darned newly formulated Pampers that are giving kids rashes and are LESS, not more absorbent). Sometimes he stays dry for naps and once or twice he did it overnight.

These are all great signs, and Ethan is 2 1/2 after all. But he's a 2 1/2-year-old boy on the autism spectrum. Most typical boys are barely potty training yet. Usually with autism kids are 3 or 4 (except for the really severe cases). I don't know how much I should push this, when there are so many other things we're working on.

Still, I thought we should get a little potty for him, since our old one for Anna collecting dust in the basement is missing the boy "pee shield." So the other day we stopped by Babies R Us on the way home from church and got the cutest little froggy potty chair. There's a problem, though.

The chair is "too" cute. And it looks nothing like a potty. Ethan doesn't want anything to do with it.

You know, back when Dan and I were dating we used to have this running joke. I don't even remember how it started anymore. I just know that I would tease him about being so literal. I'd do the "L" sign over my forehead and it didn't stand for loser but instead that he was being literal yet again. Literal would describe Ethan and most kids with ASD to a "T." They don't usually get euphemisms and figures of speech, sarcasm, that kind of thing. They are concrete, and to Ethan, a potty is the toilet in either the upstairs or downstairs bathroom. It's not a colorful froggy that looks more like a chair and can be moved anywhere. He even went up to it and said, "Flush? Work?" meaning "Where's the flusher? How can this work without one?"

So maybe we'll have to find another use for the frog. Maybe I need to find that Sesame Street toilet seat we used to have for Anna. Although it doesn't solve the pee shield problem. Ugh, I can't even think about trying to decide how to teach him how to stand vs. sit and pee. But I'm glad to be discussing these issues now, at age 2. He's showing an interest! It's a start, froggy seat or not.

Thursday, May 13, 2010

Chasing Butterflies

I went out with a friend last night and had a wonderful time catching up on life and laughing. She mentioned a blog she reads by a mom in Florida who is also a photographer and who always seems to be doing crafty and fun stuff with her family. This mom gave birth to a baby girl a few months ago with Down syndrome. It was a complete surprise to everyone. A few minutes ago I read the account here and I'm glad there was no one in the house. I was SOBBING. I just couldn't help myself. Everything she wrote rang so true. They weren't just words on a screen...they were feelings I'd felt. She too has an older daughter and dreamed of a "perfect" little family. She too felt the wrenching pain of learning she would not have the child she expected. She too cried nonstop for hours and hours.

And she too found healing after, and sometimes in the midst of, the agony.

Last weekend we were at a wedding and someone at the table brought up boys and birthday parties. I didn't even hear the conversation but after a few minutes Dan said quietly to me, "I just thought of Ethan and wondered if he'd ever want something like a pirate birthday party." I could almost see a trace of tears in Dan's eyes. He doesn't dwell on things; they just tend to smack him and then move on.

"I know, I know," I whispered back. "I've thought of that." Even recently. A few minutes later it was time for the groom and mom dance and suddenly this video came back to me that I'd seen on an autism website. It was this incredibly depressing video that I believe was designed to elicit sympathy or pity, and most of all donations. A downtrodden mom said into the camera tonelessly, "I'll never see my boy get married or dance with him at his wedding." When I first saw that I turned off the computer and cried and cried. Here we were at the wedding and I felt that twinge, that pain, that sadness. But something else was stronger.

"Who knows?" I said suddenly to Dan. "Who really knows?" Could we really project the future from here? But even, even if all of those things are true, A resolve was rising up in me that I'd never felt before. "We all have a purpose here on this earth," I said, while the music blared and everyone else talked about other things. "I'll be proud of him no matter what he accomplishes."

"Me too," said Dan, and we were able to smile. And later we danced, without melancholy or longing or wondering what would happen down the road. All I could think is that so much of life is what we make of it. So much depends on our perspective. And so much is made beautiful when seen through the eyes of unconditional love. That is the story of our lives. Not who we marry, what accolades we receive, how much money we make, or even which talents we hone. No, it's about how much we truly give and receive love.

This afternoon the sky was an incredible blue and the breeze felt wonderfully cool. Ethan and I saw a butterfly land on a pot of flowers. He went closer to examine and it fluttered away, so we took off after it. We ran through the too-tall grass in our backyard, laughing and chasing as the butterfly flitted from tree to tree. And I was perfectly happy.

Monday, May 10, 2010

First Signs

Not long ago we had a guy come and wallpaper our downstairs bathroom. I called him "Mr. Fix-It" for Ethan and he happened to be there on a Tuesday afternoon, which is also known as Crazy Time in this house. Anna was home from school, we had two therapists here, and Mr. Fix-It had spread his wallpaper stuff all over the dining room. Ethan was stressed. He kept running to check the bathroom and saying, "Fix it! Fix it!" My own head was pounding. I was explaining to the guy about Ethan when he came out with, "You know what causes that, don't you?" It's all that mercury, in the vaccines."

"That might have something to do with it," I responded quickly. "But not with Ethan. I am convinced that's not the case with Ethan."

I'm not here to argue that vaccines have absolutely nothing to do with the increasing prevalence of autism. But I am here to say that they are most certainly not the only cause, and that I feel that with many kids, there are many more factors in play. It's just not that simple.

The fear that grips parents, thanks in part to the media and the fact that there HAS indeed been this increase is that there is no test. You don't know know, you have to wait and watch. Look for signs. Yet sometimes the signs are just typical baby or toddler behaviors. So it's more than just a sign, it's a combination of signs, and some of them indeed are subtle. What's also so challenging is that every case of autism is different...I think of it like fingerprints sometimes. There are similar themes but never quite the same expression of symptoms.

Sometimes, though I wish I could find a scientist somewhere doing a study on autism, how it develops, and how to detect it, and would love to offer myself and my experience. You see, I was looking for autism. I hate to admit it, but I was. All of my life, in the back of my mind I wondered what the chances of me having a child with autism actually were, because of my family's history. This is not the kind of information you can find online. I remember hearing that engineers are more likely to have children with autism. Dan is an engineer. I'd think these things and try to brush them aside, but every once in awhile, I'd poke around on the internet. Or I'd ask my mom what Andy was like as a baby.

So much of this was driven by fear. When I look back at my pregnancy and when Ethan was a newborn all I can see is that word, looming. FEAR. I have always been a fearful person but the fear hit me head on, especially after he was born. I remember two moments: one when he supposedly failed a hearing test (they redid it right there in the room and he was fine), and another when he choked on something and stopped breathing for a moment where I felt the fear just curl its fingers around my throat and not want to release its grip. Then Ethan had jaundice and we had to shuttle him about that first week to have his blood tested and keep him in sunlight (in November!). I was exhaused, as all new moms are, and I was tense and on edge, and adding to it was that gnawing fear that something is going to be wrong with my baby.

And so I think about the signs. What were they exactly? In the beginning it was so hard to differentiate because Anna was such an atypical newborn. She literally smiled at birth and was so alert. She didn't want to sleep! And then Ethan, my Ethan, who was so sleepy and seemed almost as if he'd been born a bit earlier than 13 days early.

He was fussy, but not terribly so. He would sleep and sleep and sleep sometimes. He couldn't make up his mind about nursing, but we made it through, at least for 5 months. There were little things, here and there. He smiled late. He seemed to be slow in tracking objects with his eyes. He didn't do a lot of cooing or back and forth noises, but there were some. I remember asking the doctor that, again and again. Does he play peek-a-boo? Does he imitate patty cake? I'd hear. And I'd say that yes, he'd done it before, but not that often. The doctor didn't seem to care about that. He just cared that Ethan possessed the skill.

There was this day when Ethan was five months old when the fear attacked me. This was around the time I took him to have pictures done and the bumbling guy there couldn't get Ethan to smile or really focus. I ended up calling the pediatrician to have him checked. She really didn't know what to tell me and didn't really find anything, except that one of Ethan's feet turned out more than the other. We started talking about my family history and Dr. Hoberman's expression softened. Before I knew it, she was recommending I talk to a counselor. It seemed, she thought, and understandably so, that this was more of an anxiety problem than a problem with Ethan.

And you know, in some ways she was right. No matter what ended up happening down the road, I look back now and think that I wasted at least a year worrying about Ethan when there wasn't really anything I could do, at that point.

What were the signs? I do ask myself that now, not because it matters, except that maybe, I think, I might be able to help someone else. The signs presented themselves ever so gradually, and confusingly came in conjunction with Ethan meeting just about all of his major milestones within the normal timeframe. Except that the social milestones were always flagging a bit.

I do remember that those reflexes they talk about (like the morrow or "startle" reflex) seemed to be taking longer than normal to fade away (which would signify some kind of neurological trouble, possibly). And one time I remember watching a friend's baby reach into a container and cleanly pick up cheerios, one by one. Ethan had trouble getting his hand in and picking up things cleanly (which would be a motor planning issue).

When Ethan was about nine months old I noticed something that made my blood run cold. I don't mean to sound dramatic, but it did. Instead of smiling at the cashiers in grocery stores, he would seem to look through them. He didn't act afraid or turn his head. He would literally seem to be staring not at them but past them. Time went by and he did start to get some words around a year. Interestingly, while he'd do daddy and mamma every once in awhile his favorite word was light. The word fan came early, too. That makes me smile now. Even then, lights and fans.

Last year I was still doing videos on a freelance basis and in March (Ethan would've been about 15-16 months old) we filmed a family with a little girl about Ethan's age. I marvelled at how social she was, but then I thought, well, she's a girl. Girls are usually more social."

Yet something inside me knew. After awhile the belief changed from an irriational fear that I could brush aside to a small voice saying, "Something is wrong. Get him checked out." One afternoon when Ethan was about 16 months old I decided to make the call. I had just left him with my mom and he had not flinched at my leaving. He didn't wave bye-bye, didn't say mama, just looked right through me. I got into the car and cried. I was shaking. I dialed Birth to 3 and asked for an evaluation. I hung up the phone and felt better, although I wasn't sure why.

I'm not sure why I'm writing all of this. Maybe it's because we're coming up on exactly a year since that first evaluation. While the year has been difficult, one of the hardest times was that beginning period, when only I was convinced and I spent a lot of time painfully trying to convince others. Dan didn't believe me. My parents thought I was just being paranoid because Ethan was not like Andy as a toddler. Sometimes I was actually ridiculed. That was so hard. It was hard for me too because, being such a worrier, I wondered again and again if it was all in my head. Then when he was evaluated the first time, he was borderline with the "red flags." They kind of left it up to me to do something. His doctor (who is the blase type) said to wait it out. But something in me said no, so all summer I spent calling a developmental pediatrician at CCMC, trying to get Ethan in for an appointment, arguing when they told me we might have to wait 6 or 8 months.

I don't know, maybe I'm writing all of this because with the vaccine controversy that's still out there I had to tell my story, that I am convinced that sometimes kids are just born with autism. I was watching like a hawk, and nothing changed after Ethan received vaccinations. Things just kept going on the pace they were going. Yes, I look to my own experience, and who knows if there isn't some influence? But I'm bothered by people like the wallpaper man who are convinced that has to be the explanation. Sometimes there are no easy answers. Often there are no easy answers. But I am thankful that every day, we are learning more.

Sunday, May 9, 2010

The Beauty of the Present

"Yesterday's history, tomorrow's a mystery, but today is a gift. That's why they call it the present." -- Eleanor Roosevelt

Back when I worked for Baystate for awhile we were doing what I'd call "customer service" training for employees, the type of thing most people would gripe about -- having to attend "be nice" classes. They really were more than that, but that was always the feedback we'd get. Well, during these classes, of which I sometimes helped faciliate, we'd play a DVD put out by National Geographic hosted by some famous photographer, called "Celebrate What's Right with the World."

I never tired of watching it. The guy talked about the amazing things you can capture through the camera's eye, when you keep pushing yourself to see the beautiful things about this world. There was a part in particular that stuck with me -- about a day the man was in Scotland to photograph this older woman. The woman was caring for her dying brother and obviously going through a stressful time of much heartache. When she wasn't caring for her brother, she would weave, and as he took pictures of her weaving he asked what she thought about while she was weaving. She answered simply, "When I weave, I weave."

When I weave, I weave. I've thought of that statement so many times over the years. Whenever I do I wonder how life would be different if I was able to more fully live my life in the present moment, focusing on a singular task -- whether it be a hobby, a book, cleaning the kitchen, changing a diaper -- rather than losing myself in tomorrow, that night's dinner, or rehashing a conversation from last week or last year.

When I weave, I weave. The message keeps coming to me again and again. Recently one of my favorite Christian musicians, Jason Upton, released a new CD. Jason Upton is so completely different from most people's concept of christian music. He's not on Christian radio stations and you won't find him nominated for a Dove award. I went to see him a couple of weeks ago at a church and although he had this CD coming up in a few weeks there was no mention of it, no marketing, none of the slickness which isn't always bad, but sometimes turns people off. It's hard when Christianity comes across as people trying to "sell" something. So I read a summary on his website on the theme of this new CD of simple, family songs (as he called it), and there it was again. He calls the CD, "a collection of journal entries about the mystery of trusting Jesus in our day-to-day lives; the worship of our day to day lives: to be present.

I'd never thought of living in the present as actually being viewed by God as worship. But when I think about it, maybe that's what living in the moment is all about. If I'm able to engage in the present rather than letting my mind take rabbit trails elsewhere, it's because I am at peace and trusting that I don't have to have it all figured out, that I don't have to take the reigns and get it all under control. It's letting the burden slide off my back and breathing deep.

I want that. What's difficult is that just because an idea is simple doesn't mean that it's easy. It also means I have to remember to approach living in the present as being vitally important. The so-called simple things are often the most profound.

Tuesday, May 4, 2010

Puzzle Pieces

There are many, many times when I think how appropriate it is that the common symbol for autism is a puzzle piece. First, many kids with autism (Ethan included!) enjoy puzzles for various taps into their visual skills, it's something they can do quietly and indepently, it's calming (makes me think of working on a jigsaw puzzle on a rainy afternoon). But beyond that, autism is a complex puzzle made up of many individual pieces. Autism truly is the jigsaw puzzle. And each child is a different jigsaw puzzle. In fact, I'd go beyond that and say autism can be like a jigsaw puzzle that changes from day to day, so that if a certain piece fit last week in a spot, if you were to take the puzzle apart and try again, that piece might no longer fit. Again and again, I'm reminded how gloriously and frustratingly complex and intricate the brain is.

I'm a mom, and so I know my son. All of us who are moms are like this with our kids. I think more than anyone, we "get" them. We know their little idiosyncracies and what will set them off, and what will calm them down. It's no different with Ethan...except sometimes I am only in tune to the fact that something is "off," and I'm not quite sure how to fix it. I guess all parents do feel that way just happens more frequently with kids on the autism spectrum.

On any given day I know that Ethan is not going to act like a completely "typical" kid. He's going to be more repetitive in his actions and his language. He's not going to be as social, except with family. He might ignore us and get lost in a toy with lots of lights and music. I expect those things. But then there are the days, or situations, when I know he's more "off" than usual. At those times, he can't stay in one place or focus well. He looks for doors to open and close or lights to switch off. His routines become even more rigid as he bounces from one thing to the next...slam door, attempt to flush toilet, back to another door, over to a light switch, etc. He looks for more activity like hanging upside or sprawling on the floor to escape, or maybe to calm down.

From the very beginning I was told these were sensory issues and he probably felt overwhelmed. The developmental pediatrician mentioned a "sensory diet" to help with that. I ended up getting lots of stuff from the internet about things I could do. Brushing his skin and doing compressions on his joints. Massage. Pushing around heavy things. Jumping on a trampoline. Eating crunchy food. Finding a quiet spot where he can "download" and relax. Getting rolled up in a blanket. The list goes on and on. I stared at all of that and thought that it was all very helpful information to have, except I didn't know what to do, or when, or how often. It would be like a doctor telling you to exercise, and giving you a huge list of possibilities and telling you you'd only be helping your body if you did a certain combination of exercises in a certain way, and that it could fluctuate at any time, and you'd just have to keep trying and find out.

The possibilities have seemed endless. I started brushing and doing compressions on Ethan until he kept laughing about it and wanted me to I did until he got "off" again back around Easter so now I've started them again. In the past week I've gone back to some of this stuff, also letting him do some jumping throughout the day and giving him lots of deep pressure hugs. I think I'm seeing improvement in his frame of mind, but I'm not sure. Other days I'll do the brush on him and he doesn't want it, as if he's too sensitive that day. Sometimes he seems to really need the jumping and other days not so much. Now he's really wanting to swing upside down on his belly instead of sitting on a swing, so I'm thinking some kind of vestibular thing is going on. People have said maybe it's his inner ears and allergies with this time of year but there's no way to know really. He can't tell me. That's one of the most frustrating parts. Oh, how I wish I knew. I have to watch for other cues. Thankfully if something really actually bothers him he says "all done." I know what he absolutely doesn't want. But many times I don't know what would actually help him best.

I think about this a lot in relation to doors. I wonder what Ethan's thinking when he has to constantly play with them at the grandparents' house. Is there something soothing about the way the sliding door moves and sounds? Is it just an easy way to escape? Do I put my foot down and stop him or let him relieve his stress? There are days when I actually know a part of him wants to be stopped. He will put up a fuss but then do much better when he's not allowed to continue, after he gets over his initial anxiety.

The constantly changing puzzle. I think about this and pray about this often because like all of us I want the best for my child. I don't want to unknowingly create extra stress for him or not bring him the comfort he needs. I just have to believe the grace is there if I don't do it perfectly. For all of us, parenting is often a trial and error experience. And thankfully I do feel all kids in their own way sense when our hearts are right. They are more forgiving many times than we are of ourselves.

Saturday, May 1, 2010

Friends and Where They Fit

I miss my friends.

I don't mean that to sound whiney. I'm just trying to make sense of how to make time for friends right now. Maybe laying it all out will help me see. Currently our schedule looks something like this:

Monday: Ethan sees Theresa from 9-10:30, then we go to the special needs playgroup in Windsor from 10-11, then home for lunch and nap before he sees Jessica from 3:30-5.

Tuesday: My free morning I've tried to keep open for the Bible studies at church. I NEED these and the connection to other ladies. I'm not sure if this is possible since Ethan may be starting up speech again (I am not happy with Birth to 3's speech, which is nearly non-existent and they don't really concede to adding more of that specific service). After Bible study, home for lunch and nap before Sarah (OT) comes from 3:45-4:45 and Jessica comes from 4-5:30. The overlap days when Anna is home too are rather crazy, especially when I'm trying to cook dinner.

Wednesday: Jessica is here from 9-10:30 and Jen from 9-10. Jen is speech and while I love her, again not much ends up happening on her end because she's quiet and Ethan prefers Jessica so she doesn't really DO much. Anyway, after that my mom comes (thankfully!) and watches Ethan and Anna (when she gets home) so I can get errands done, go on longer-type shopping trips, get oil changed, that kind of thing. She was originally doing this so I could work on my freelance stuff but I've recently stopped that yet realize I really appreciate the break. This upcoming Wednesday I'm going to use part of the time to visit Ethan's potential preschool in Windsor.

Thursday: Jessica is here again from 9-10:30 and then after that I usually do grocery shopping with Ethan. This is the calmest day and I love it!!

Friday: We rush out of the house to see Diane in Glastonbury for OT from 8:30-9:30. Often on Friday we do make-up appointments if any of the therapists had to miss an appointment. Lately this has been nearly every Friday. The 2nd Friday of the month is MOPS (yea!), even if I end up making it there late every time.

Saturday: Dan has been working on a special business project nearly every Saturday for almost 2 months, maybe more. He's almost done (thank God!). But with other possible business ventures on the horizon, I see many more times when it will just be me and the kids.

Sunday: Church, dinner, and sometimes visits with my parents who always pass by us that day on the way back from their church.

I guess what strikes me most is that on the times when I am free, I often just want some "down" time! I am not used to having my house ready for people four days a week and always having to be "on." During Ethan's appointments I can't just disappear but rather linger nearby since he's often running to me and needs to be hugged then redirected. Plus of course I want to observe what's happening.

I have attempted getting together with people in the evenings and while not impossible, it's difficult. One big reason is I try not to be out more than once a week in the evening, or two nights at the most. I feel that Anna especially needs some one on one time (never mind Dan!). Then there are the weekends, where again I feel as if I'm either trying to play catch-up or just want to relax with my family without therapists being around. I'm trying to make sure no one is neglected, but it's not easy! Friendships have been slipping by the wayside, and I feel sad about that. I know there is an answer and I know this is just a season.

The other question has been...if I do have any free time, how much if any should I invest in new friendships with other special needs parents? Ack. I can see the benefit for sure and actually I'm planning on checking out a few support groups in the next couple of weeks. But if I do that, that means even less time for my current friends. Ack.

I can't agonize about this anymore right now. I just had to write it down and get it all out because it's been percolating in my mind for awhile. The other day Ethan's outpatient OT observed that maybe he's getting a little burnt out. That could very well be true, because I know that's how his mamma feels. I know this: there is no way he is bumping up to the 15-20 hours a week of therapy they feel is "optimal." There's just no way, for his own sanity and for all of us. Sometimes we all just have to live, and my little boy needs to rest, relax, and play, even if his kind of play can be kind of limited and repetitive. And sometimes mom needs to rest, too.