Friday, January 29, 2010

Words, Play and Love

I just read an article about the way a child's vocabulary and pretend play appear to almost always be linked: as kids expand and broaden the scope of their pretend play, so their vocabulary is expanding simultaneously, and vice versa. I'd never thought about that before, and I began to wonder why that is. I know it has something to do with this "theory of the mind" I've heard about and read about in various articles on autism research. I'm hard-pressed to correctly explain it, but I think it has something to do with being able to conceptualize...having the ability to imagine something in your head that isn't happening right in front of you and isn't literal and concrete. That is what pretend play is, essentially, and it's something children on the autism spectrum often have trouble with. But how does the language link happen? That is where I'm still stumped. Apparently I'm not alone. After a little digging, I found that researchers aren't sure themselves why pretend play and vocabularly blossom simultaneously.

That being said, and for whatever reason, I have noticed that as Ethan begins to delve into just the beginnings of pretend play, his vocabularly has simultaneously been increasing. He is just beginning to combine words: and it's literaly within the same week that he's begun putting words together ("light on!""car go!") is that he's been a little more explorative in his play.

With every pretend play action, he has to see me do it first. He may only need to see it one time, but I have to model it first (like feeding his Elmo doll). Sometimes I'm proud of him for picking things up so quickly. Other times I wonder just what is going on inside his mind that makes spontaneous play so difficult?

I hate to make my child sound like a science experiement. It's not like that at all. I love him so much it hurts sometimes. I think we all feel that way about our kids. And we all marvel at watching them grow and learn. Because Ethan has some added challenges, I also am constantly trying to get into his head and see things from his perspective, or think about what I could do differently to help him in areas where he has trouble.

I know every moment of every day cannot be that way. There have to be times of just hugs, tickles, kisses and snuggles, where whatever he is learning or not learning is set aside so he can just be loved.

Tuesday, January 26, 2010

Fighting the Blahs

I've often said that the time spanning from about the Super Bowl until the clocks spring ahead is my least favorite season in New England. Winter is getting old, spring seems light years away...everything just becomes stale. In the past, particularly in our pre-kid days, I'd distract myself by dreaming and planning elaborate summertime trips. That's not really in the cards these days, at least not for awhile. The kids are so young and Ethan has his additional challenges. We're trying to save money and contemplating career/business changes. The timing isn't right.

Oh, how I loved those trips. For someone who normally hates change, I've never quite understood my passion to see different places. I actually get excited if I'm on a stretch of road in Connecticut I've never driven on. It doesn't take much to thrill me. One year (1996, I think) during my winter doldrums, and being broke, Dan and I took off to Albany for the day. Albany! And had a blast. Another wintery Saturday I drove to Montpelier just because it was the only state capital in New England I'd never seen. I get antsy. I get jittery. I get bored with driving the same stretch of 91 day in and day out, and the unending trips to Target and Big Y for forgotten household items. Sometimes it just feels like drugery. I hate to say it, but sometimes Ethan's appointments feel that way, too. Of course I'm so grateful to have them. So grateful. But other days I can't help but think, "I have to do this five days a week for another 10 months?" And then there's this little part of me that voices protest, like a toddler, "But I don't WANT to!"

I've been thinking about this a lot lately. I know that part of my struggle with the blah's is simple human nature, but I think this issue is magnified for those of us living in a Western "comfortable" culture. We have the luxury of being dissatisfied because some of our wants, not needs, are not being met. Do people in Haiti get "the blahs?" In Sudan or Ethiopia?

I was spending time with God yesterday while vacuuming (a phenomenon that happens quite often) and poured out some of my frustrations with life, and myself. I am realizing that I have not yet figured out what it means to live a joyful life. Instead, I've spent most of my years living from one "experience" to another to get me by. Meaning: I look forward to things to fuel me, like pizza for dinner or a movie that, a shopping trip (to a bookstore; I hate clothes shopping!). None of that is bad in itself, but I want more. I want to stop living from thrill to thrill. There are people who even live from spiritual thrill to thrill, jumping from one conference to another, looking forward to tingly encounters with God. Again, it's not necessarily bad to thirst for an experience or an encounter. But I want to learn how to live when those things are stripped away. I think it's why people fast (something I've never done very well with). The question is: if I don't have my Dunkin' Donuts coffee, my Facebook, my TV show, my I still feel fulfilled? And how many spaces meant for God inside me am I filling with other things?

I've heard Joyce Meyer define joy as a "calm delight." Right now that sounds okay, really, but nothing special. I want to learn how to embrace a life of calm delight, because right now, if I'm not feeling really happy, because of my vacation plans or my lucrative freelance project or whatever it is, then sometimes I fight the blahs. I think sometimes we (or I, at least) become addicted to how things make us feel. And if we aren't feeling really great, then we need to find something to make us feel really great.

Yet there are times of just being, resting, waiting on God. The quiet in-between the gray, dreary days before spring when not much beauty or life is evident. Someone said recently, "God didn't say 'Be still and feel that I am God.'" Be still and KNOW. Knowing something is true rather than feeling it is not nearly as exciting. I'm longing to be satisfied by just knowing sometimes. Knowing that this season will pass. Knowing that good things lie ahead. Knowing that God is good and that I am blessed. Knowing that, as Paul stated, "Whatever state I am in, I can be content."

Saturday, January 23, 2010

We Have a Pretend Play Sighting!

I'm continually amazed at the little things that get me excited for Ethan that most parents would blink twice at. Sometimes that feels almost silly and a little sad, but mostly I'm grateful for new lessons in learning to be thankful for the little things, a cliche people are always saying but how often living?

So, pretend play should come naturally to most children and usually blossoms around age two. There will always be some kids who are less imaginative and don't care so much for elaborate pretend play, but living out some form of it on a regular basis is absolutely vital. Pretend play means a child is beginning to understand symbolism and is beginning to think beyond themselves and their immediate needs. Pretend play sprouts first from learning to immitate, then sparks the brain to think "outside the box" and create new scenarios and possibilities.

Again, we don't think any of this when our typically developing toddlers begin "cooking" in a toy kitchen or pretending to drive the box they're sitting in. And we don't have to push them to...they just naturally do. Sometimes I get frustrated that play with Ethan has to be so much WORK. This is fun! I want to shout in my less patient moments. But then, when he shows me an inkling of understanding how to play pretend, I just want to grin from ear to ear.

Ethan is just beginning pretend play. He will play in his kitchen for a few minutes, always the same way, always bringing me a toy piece of corn to eat and a drink, and always putting them in the microwave part. He will put food pieces in his Elmo microwave (always in the same order) and will offer me some, and then pretend to eat some, imitating the gobbling noises I make. I love the imitating, because it's something that's been challenging for him. He is just starting to understand you can make blocks into trains or airplanes or that the clothes basket could be a toy car.

The other day he was playing with these two flat wooden dolls that Anna had decorated as part of a little craft project. He likes to bang them together and try to sing jingle bells, with the proper rhythm and all. I saw a toy truck nearby and decided we needed to give the dolls a ride in the truck. He thought this was rather funny, especially when the truck crashed. We played that for about 5 minutes.

Today I took out the truck again while he was playing with his animal magnets on the refrigerator. He saw the truck, looked at the monkey in his hand, and put in in the truck. We started pushing it around, and he brought other animals to "go for a ride." Then we pushed the truck over to Anna, who was lying sick on the couch, to unload.

Voila! Pretend play. I felt as if I could see the connections in his mind being made, the way he carried over an idea from the other day and applied it in a different way. In that moment, as inconsequential as it might have seemed to most others, all I could feel was incredibly proud.

Friday, January 22, 2010

Yes! Play with Your Food

A big part of therapy with Ethan is getting him to try new things. Thankfully, he is fairly flexible. There are kids on the autism spectrum who will refuse to be in the same room as a particular food, for example, or will only drink from a particular cup, sit in a certain seat, or eat a specific type of cracker. I am so thankful Ethan rarely tantrums if we mix things up on him, and mixing things up early in the game, before he gets too set in his way, is a very good thing. For example, if we're playing with Play-doh, we try to do all sorts of things with the Play-doh (rolling, cutting, squishing, poking) before he decides to play with it just one certain way.

Or drawing. The occupational people really want to work on coloring/writing with him, because that's his weakest skill right now. He doesn't have much interest and plus he's clumsy with any kind of writing implement. I was playing a great drawing faces game with him that he absolutely loved (basically I draw a sad, happy, mad, etc. face step by step and then he helps cross it out, which is helping to teach about emotions and facial expressions). We played the game so much that I quickly realized that every time Ethan did express interest in writing on his own, he was trying to copy the game. I'd hear him trying to say the first steps ("Circle. Eye. Eye. Nose.") in his own fumbly language. It's funny, because most of the words were indeciperable, but the cadence to them was perfect, just as I'd said it in the game. Anyway, once again Ethan had gotten stuck, so I've had to pull back from doing that game, which means he's not interested in coloring all that much once again. I'm constantly thinking (and so is the therapist) -- what would pique his interest once again? The Magna doodle or Aqua doodle? Chalk? Markers? Finger painting?

The thought of finger painting brings me to the issue of food. This is another area where thankfully Ethan isn't horribly inflexible but could stand to do better and expand his repertoire a bit. One thing that came up after talking to the therapist is that Ethan doesn't like to play with his food. Awhile back when he was pretty young he was a bit interested in making the whole baby mess with mushy baby food but after that lost its novelty he's pretty neat, unless he's focused on devouring something he loves, like yogurt. He never hit that toddler, throwing food on the floor, mushing everything with his hands phase. I didn't see this as necessarily a bad thing (quite the contrary, thinking like a mom!) but his outpatient occupational therapist, Diane, is suggesting we let him do it a bit. Exploring food means being open to new textures, flavors, and colors. Being willing to explore it with his hands can translate into Ethan eventually being willing to explore with his mouth (right now his diet, while passable, is rather limited). And that openness to getting a little messy can carry over to art projects, the sandbox, water play, and so on.

Really it all boils down to curiosity. I think I've mentioned previously that in Ethan, I see reflections of myself. I have to admit I have never been a curious person. I've not been the type to say, "Let's try this and see what happens." As a result, I think there were many questions I never asked even about the basic world and everyday life around me, and many facts that are common knowledge to most people that I never learned (such as how certain things work). So with Ethan, I learn why curiosity can be so vital to learning. I want him to get messy. I want him to dump out the toy box and explore everything in it. The mom part of me may grown about the clean-up, but the results will be well worth it.

Wednesday, January 20, 2010


Last Saturday morning little Jamie Knotts lost her fight. Jamie, whom I'd visited twice in the hospital but never had a chance to hold. Jamie, called a "love magnet" at her service on Monday.

I can't tell you how often I've thought of and prayed for Jamie and her family these last few months. Part of that was the nature of the situation, the fact that Kelly is my friend and that I, as with so many others, of course wanted to see Jamie healed and well. I also felt a certain connection that is hard to explain. Jamie was diagnosed just after Ethan was diagnosed. In a very different way, the Knotts' world was also turned upside down. And yet they faced their situation with incredible grace, strength, and courage. I could feel God's peace all over Kelly when I went to visit at CCMC. I walked away thinking, "I want that." And "If they can be brave, I can be brave and take what God has handed me."

Lyssa and I were talking one night about the two situations and how they were each so difficult, in their own way. I kept rolling it all over in my mind. Which was worse -- to be told your child has a possibly fatal illness, but she might be completely cured from it, or to find out your child would have a lifelong but not life-threatening disability? The questions are almost sadistic in nature, like those ethical questions we've all been asked (i.e., if my child and my husband were drowning and I could save only one, who would I choose?). But still I thought about it. In the days when Jamie was doing well and treatments seemed to be working, I felt a longing...for her family; for ours. If only. If only I could be brave enough to go through something horrible and then learn Ethan would be completely okay. I've known numbers of children through my work with Baystate who fought cancer, won, and have gone on to live full lives. One is getting married this summer. Their cancer is a long-ago bad dream. I thought that maybe, just maybe, that would be Jamie's story.

But no. Kurt and Kelly were asked to walk the unthinkable path. They had to kiss their baby goodbye. They held her for hours, waiting, praying, wanting to keep her here but wanting her peace even more. Devasating. Heartbreaking. Really, there are no words.

This week Ethan has been sick with a pretty bad virus, and he only wants to be held. I've smoothed his feverish cheek against my face and thought of how I've missed, while he's been sick, all of the little nuances that make Ethan, Ethan...the books he likes to read with us and his puzzles and trying to sing Old McDonald. The way he chases Anna through the tunnel, plays hide and seek, and follows after the kitty, trying to pet him. His huge smile that lights up his eyes and his entire face. Ethan has wanted me to hold him so much this week, there are times when I've grown tired and irritated with the whining. But then I think of Kelly, who said that when Jamie became sick Kelly missed being able to hold her. She missed her fussy baby who from birth had seemed to never want to be put down.

I know now. Was there ever really a question? Living with a child's disability is not easy. It can be downright painful. But nothing is more heartbreaking than a mother's empty arms.

Monday, January 18, 2010

Sweet Love

On Saturday morning I took Anna to Target for some "girl time." She loves looking at crafty stuff and buying seasonal decorations so we got some things for Valentine's Day. And I let her sip some of my chai, so she was having a blast.

As we were paying at the checkout, I noticed an older couple in front of us talking to the cashier. They walked away and the cashier kept gazing after them, smiling and saying, "that's sooo sweet." I asked what had happened.

"They just won a brand new car from some raffle in Enfield," she said, "and the husband said, 'Actually, I won it' and his wife said, 'I won too -- I got you.' They've been married for 50 years." The cashier confided she was getting teary-eyed, and I understood.

Out in the parking lot, I watched them. They were slowed by of them had a cane. The husband had a protective arm across his wife's back as they got into a shiny red car in a handicapped parking space. They were talking, laughing, enjoying a trip to Target as if it were something much grander. I watched them and couldn't stop smiling, wondering about their life's story.

It's often presented as such, but love is not a holiday, an occasion, a fleeting feeling or a whim. Sometimes it's a choice. It can be hard work, but the rewards are sweet.

I'm reminded of 1 Corinthians 13, a chapter that's become cliche because people tend to hear it at every wedding they attend...but how often are the words remembered and studied beyond the ceremony and into the marriage?

"Love always protects, always trusts, always hopes, always perserveres. Love never fails."

Like the sweet couple with the sparkling new car, touching hearts without even knowing.

Tuesday, January 12, 2010

More Lessons Learned

We went up to Maine this weekend to visit Dan's grandparents. I was a little apprehensive, wondering how Ethan would do. I ended up knowingly overpacking just to have as many familiar items with us as possible, and it basically worked. Yes, we still had some door slamming going on (which he likes to do to relieve stress), but things could have been MUCH worse.

On Saturday we celebrated Grampy's birthday at Cheryl's house with a ton of people. I honestly was having a good time but feeling a bit tired out, too. I COULD have just let Ethan run amuck, but I felt he needed a little direction. Was I right? Who knows. Maybe I should have just let him have a down day. As it was, I let him do his door and drawer thing a little bit, and then redirected him. He barely cried once, even though he'd had no nap and not enough sleep the night before. So I didn't feel I was pushing him too hard. I did feel I was maybe pushing myself too hard. We all need a break...and the thing is, if I turn the reins over to Dan, he will help out, but he's just not as used to doing exactly what Ethan needs, so he doesn't have as much success. Not that he's horrible working with him, it's just that I'm with Ethan day in and day out. So I end up being the one sticking near him a lot of time, while Dan's over relaxing and chatting with people.

I know this is not the best habit to get into. We're still finding our way in all of this. At one point after I'd been helping Ethan play a little bit with Anna and his cousins I looked over and saw Dan and everyone chatting, and Denise sitting with her feet getting rubbed by Mark and letting Haddie run around and get into everything. I went into the bathroom for a minute and thought about how I'd just love to let my toddler run wild without worrying so much what the repurcushions would be. Haddie was actually getting into stuff she shouldn't have but it wasn't really phasing Denise. I started to feel the icky taste in my mouth of bitterness. This has been a lifelong habit -- resentment -- and to be honest, most of the time I've not stopped it.

I knew I had to, though. I knew I had to make a choice. I've always had to make a choice, and so often I've made the wrong one. I literally had to tell myself, "I am not going to let these feelings bring me down. What other people are doing is not my business. I am going to CHOOSE to have a good attitude, no matter how hard it is. God is going to have to help me." It felt painful but good at the same time, kind of like exercise.

So I went out there and relaxed a little, but still kept my eye on Ethan, and let the feelings go. Not more than a half and hour later Anna came up to me out of the blue and said, "Momma, you're the greatest gift that anyone has ever given me." I almost started crying right there. And then Uncle Gary two minutes later said, "I've watched you all day with Ethan, and you are doing a fantastic job. Cheryl noticed the same thing. It must be so hard to be patient, but you are so good with him."

Driving back afterwards I kept thinking how evident it was that God is there for me when I make the right choice, the hard choice. Again and again I've seen it -- God gives us what we need to deal with any and every situation. And sometimes He provides those little extras, almost as if to let us know, I saw that. And I'm proud.

I know now that yes, there have been many times in life when sucky stuff happened and I was completely justified in letting myself feel hurt and angry. But there were many more times I chose to hold on to those feelings for too long...or even worse, to get upset about things that weren't so bad, to listen to lots of "it's not fairs" and pointless comparisons, and in the process, lost all sense of joy.

I'm not going to live in regret. That was then. I'm certainly not going to live life on Cloud 9 from this point forward, but again and again I'm being reminded that our quality of life really isn't so dependent on what actually happens, but rather on how we respond.

Tuesday, January 5, 2010

Play and Work

Sometimes I know I'm overthinking in general, and my approach to Ethan. I am a thinker, and I can drive myself crazy plotting and planning, but other times, being this way is tremendously beneficial. My son needs a thinker mom. Especially right now, in order to best help him be all he can be.

Take this whole play thing again. Or play dates. We will get to the point I know when I will bring Ethan somewhere and we'll have an honest to goodness playdate that includes me (joy!) getting to talk with the mom and let the kids do their thing. It ain't happening right now. This is what I probably need to explain to people, so they don't think I'm just being avoidant. It's not that I can't hang out with people, it's that I'll either be completely ignoring Ethan and he will most likely (but not necessarily) getting no benefit from the playdate, or I will ignore my friend to completely get him to interact.

Play takes so much thought sometimes with him, but it is so worth it. The mall play areas, for example. I don't take him to Buckland right now because he gets too distracted by the elevator. Enfield is smaller and less distracting, although there is this annoying loud TV blaring ads right nearby. Today I took him and observed, as I always do. I can meet friends here (and have before) but if I do, there are lost opportunities. This morning, for example, Ethan was in as about a social mood as he gets with kids who are strangers. How could I tell? Normally he will go spin the circle toy for about 15 minutes in the back area where he can kind of hide. Today he was right out there where the kids were, climbing through the log tunnel and going on the slide. He was giving kids lots of great eye contact, and there was this one little boy who I could just tell Ethan liked. Ethan was watching him to see if he'd come back and go on the slide with him. This may not seem like a big deal, but was most certainly a big deal. I could see that he was wanting to play with kids, or at least be in the presence of other kids. He just didn't quite know what to do.

SO, he spent a lot of time playing a game with me called "let's run out of the play area a million times and make mommy chase me." He'd do that, but then go back and look for his friend. With urging from me, he'd hang out in the boat or sit in the toy car for a few minutes. He didn't stick to one toy, hiding, but wanted to be out with others...yet I can guarantee if I was gabbing with a friend, he would've spent the entire time running out of there, just trying to get my attention. I can really see on days like this how he will benefit from being in a preschool setting next year.

He's been having a blast with the tunnel at home, playing with Anna. We are teaching him to look at her, get her attention (hopefully to start calling her "Anna! Tunnel!") and I just love the huge grin on his face when she agrees to play. At times like that he seems nothing like a child with autism. But yesterday, for example, Anna didn't want to play. And I can't make her. But this time I gently bribed her with some Trident gum, because he was sooo eager, doing everything he could to get her attention, and the thought of a missed opportunity just really bothered me, and Jessica too (who was there for his new Monday afternoon appointment). I am very vigilant though, about not making Anna do too much. I know that story well. I can't bear to put that responsibility on my little girl.

Sometimes it gets exhausting, continuing to push, push, push him. Yet he longs to be pushed. He had an appointment with someone filling in last week in Glastonbury and I thought she was going to send him over the edge. She was so pushy (annoying almost) and demanding. Yet, with some protest, he responded. He did more with her than he had with the woman who's been working with him for 2 months.

Yet there are times when I have to take a break. I know that. I can't be supermom and I can't cure him. I worry about burning out. There are days I wake up and have to fight a weariness that wants to settle over me like a blanket. It's a feeling that says, "Oh this? You have to deal with this again. This is too much work." But it's only too much if I'm trying to do too much, at the wrong time, in my own strength. God's grace truly is sufficient for me. I've just got to learn to keep walking in it.

Saturday, January 2, 2010

The Hush in the Woods

This afternoon Dan and I went for a walk in the woods while his parents were watching the kids. Some snow had just fallen and everything was frosted white. I am not much of a person for nature walks or walking in general (I hate to admit), but I loved it all. I loved the hush that comes with a cold, snowy day. Every once in awhile we'd bump a tree branch and snow would come cascading down on us. The snow was that very light and powdery texture, more like flour than sugar.

Suddenly I remembered being a kid and walking through the woods in Gilbertville. Sometimes if the stream was iced solid we'd walk down it and up to the fields. I'd walk with my dad and he'd build a fire in one of the old indian caves. Gilbertville was not the nicest place to grow up...very much a lower middle-class town, with more bars than stores, but on those winter afternoons in the woods, none of that mattered. I just remember the hush of the woods; sparkles on snow; white everywhere; a soft wind; and the crunch of my little boots, following bigger ones.