Sunday, February 28, 2010

What People Don't See

Today church was an adventure. I've been attempting to transition Ethan over to the toddler room, which is basically two and three-year-olds, as opposed to the baby room. Depending on the day, this works out okay or...not so well. Today was a not so well day. The reasons? Well:

1. I'm new to this and I need to learn how to educate people on how they can help Ethan and what some of the "pitfalls" might be. I think I need to write up some sort of reference card. One new reason I need to do this (beyond the obvious that the teachers need to be in the know) is that

2. Ethan is starting to "milk" my presence down there for all it's worth. It's like any kid that knows they can get away with stuff if mom is around as opposed to the level of respect they might have with a teacher. Hence, today I got lots of looks and smiles before he ran over to try to dig in the craft cabinet or play in the bathroom. He was basically waiting for me to go after him, and he'd start laughing when he saw me coming.

3. Whichever teacher is down there also has an impact. Today the coordinator expected a little more from the kids than other teachers do (wanting them to not play with toys but to sit and watch a Veggie Tales video, for example). This leads back to point #1. I need to find out what is expected of the kids, then communicate what Ethan can handle, and maybe we can meet somewhere in the middle. Yes, Ethan should be expected and can handle sitting at the table and eating a snack. No, he can't handle sitting for 10 minutes, coloring, and listening to a lesson. Not yet. We're getting there.

Thankfully after church I called the nursery coordinator and we talked about how we can work together to make this transition happen. I can't tell you how much this means to me. I can't tell you how much it means to be in a church where people have a heart to reach out and help parents and their children, especially those with special needs. Our church could do more -- so many churches could do more -- but I am thankful that the willingness is there, and more and more people I talk to are seeing what a benefit it would be to actually have a "special needs" ministry. The issue is always (as with everything) volunteers. It's hard enough to find regular Sunday school teachers! But I think we are onto something, and I want to do my part to help. With prayer, hard work, and with more and more people's hearts being open to how much this can make a difference, it will happen at some point.

I know when it does happen I will be at the forefront sharing my background stories, helping people to understand how much this can mean to a family. What always comes to mind is the image of me at 11 years old. We attended a small church in Springfield, and this was 25 years ago, when people weren't as knowledeable about autism or special needs in general. They didn't know what to do about my brother. And of course it was a small church and there weren't a lot of resources...but there wasn't a lot of care and compassion, either. People shunned us, stared at us, didn't even try to learn more and think about how they could help. I don't remember if my parents asked me or I offered, but I ended up staying home to watch Andy most Sundays. Either that or I'd go outside with him and we'd wander around in the small patch of woods behind the church. It was a weird responsibility to have (I can't remember why I was the one doing this rather than my parents) but there was a part of me so relieved to not be in that stifling place where people were so unkind and unfriendly.

The fact that that was a church, of all places, is just so sad to me. I think of Jesus, and the verses where he talks about letting the little children come to him. This man who kept the company of lepers surely meant all children. And yet his followers so often have not, well, followed, that example.

But I have to say this: one day about a year ago I happened to pop into the ladies bathroom in the basement of church during the middle of a service. I heard the voice of a little girl and then a woman's voice behind one of the stalls, gently instructing her. After a moment I realized the child was a sweet blonde-haired girl with Down syndrome, and the woman's voice was not her mom's but the pastor's wife. As I walked out after them and watched them head upstairs to the church foyer together, I realized what was going on. The pastor's wife had volunteered to watch the little girl so the mom could attend church. There they were, sitting on a bench while the service was going on beyond the double doors, looking at a book together. (Apparently, I learned later, this arrangement has been quietly going on for years. Every single week).

In that moment, I felt a very deep wound begin to heal, and a taste of bitterness that I thought I'd let go of dissipated. If they had looked up they would have seen me with tears in my eyes and not understood. It was as if, by helping the little girl, she was helping me. Somehow, a wrong had been righted.

Saturday, February 27, 2010

The Boy in the Mirror

Whenever I wrangle my mind away from what other kids Ethan's age are doing, or what he should be doing, and all of that wasteful thinking, I am able to truly relish moments like this:

Yesterday I was packing up the kids to sleep over the grandparents' house, and Ethan was up in our bedroom. We've got a full-length mirror on the closet door that's been there forever.

Not surprisingly, Ethan has never been one of those kids to enjoy looking at himself in the mirror. For the longest time, he'd stare without recognition, then he started giving a little grin each time he'd look. It's always been a fleeting thing, though.

Yesterday however Ethan suddenly "got it." He stood there, looked at himself and smiled. Then he started kissing his reflection. Then he saw my reflection and said "Mom!" I can't tell you how much that word means. I truly think I could hear him say it, yell it, whine it forever and not be bothered in the least, because when it takes your child until over age 2 to say it, and you're attacked by a fear that your child may never talk, "mom" is the sweetest word in the world.

Then he moved his hand to watch his hand move. He moved his mouth and watched his mouth move. He stepped backwards and then forwards. Anna came in and bumped him and I thought he'd be startled and run away from his fascination but nothing could deter him. He was mesmerized by his reflection.

I realize this is something a one-year-old would probably typically do. I'm starting to get to the point where I really don't care. The fact is, Ethan was taking another step and discovering his world. In his time. If I only focus on the timing or the delay, I miss the moment. I miss relishing the little boy in the mirror.

Wednesday, February 24, 2010

Not Forsaken

Busy, busy days here. It's kind of nice because I don't have time to fall into my usual February habit of complaining about the weather (especially on gray days like today, when everything turns into slush).

So, we were working on teaching Ethan how to match things. It's funny how certain skills don't even feel like skills, just life, until you are trying to teach them to someone who hasn't gotten it yet. I have to slow down and rethink everything.

What's funny is that I think Ethan understands the concept of matching -- he will bring his toy pig from the other room and hold it up to the pig magnet, saying "Pig!" But what frazzles him is the standard assessment format -- meaning, the therapist shows him three different objects, hands him one that matches one of the three, and asks him "Where does this go?" He doesn't know what to do. Maybe because there's not really a point when he does it that way. Again and again I have opportunities to see the way learning, emotion, and motivation are linked. Ethan loves pigs and he wants to show mom the way the two pigs go together. He could care less about the fake flower that Jessica wants him to mach with an equally ugly fake flower (that he's never seen before). I can see how it makes much more sense to teach matching via the laundry, emptying the dishwasher; stuff like that that Ethan already enjoys helping with.

A dear woman who I've never met agreed with that assumption, when I emailed her the other day. I stumbled across Tahirih's blog ( and companion website on autism games ( a few months ago and they have been a godsend. Tahirih is a speech language pathologist out in Minnesota who runs a play clinic for kids with autism, and she has all kind of wonderfully creative games that kids on the autism spectrum will enjoy. She's put many of them into video form online so parents and kids can watch and replicate them on their own. Best of all, Tahirih has a huge heart for kids on the spectrum and is incredibly responsive to people like me who don't know her but are looking for advice. We've had several great conversations over email on different aproaches to try and getting into the "mind" of a child with autism. I often tell her Ethan is her biggest fan. Her games are broken into three categories, and Ethan could watch all of the beginner games for hours. He claps, smiles, laughs. Sometimes I will try the games when the therapists come just to draw him in and I almost wish they would do more of them with him, because sometimes they work better than the stuff the therapists had in mind! Then I feel a bit like I'm upstaging them with my idea -- but I can't help but try what I can to help keep the little guy engaged.

When I think of Tahirih and her website I can't help but be flooded with gratefulness for some of the people who have appeared in my life in recent months to help me through this journey. By that I don't mean friends or family or other mainstays, for whom I am of course very thankful as well, but here I'm referring to those people who have come out of this woman halfway across the country...or two friends from childhood I'd recently made contact with who have children on the autism spectrum...or the website of a Christian mom whose daughter has severe autism that has provided much inspiration and spiritual insight on some of my low days.

I may not always like the situation I'm in. I may feel despondent at times, not wanting to be walking down this road, or lacking in joy or strength. But I have never felt forsaken. I have to thank God for that. There is nothing worse than feeling completely alone.

Friday, February 19, 2010

Puddles and Sunsets

So after I had my chance to vent, I'm doing better now. Kind of sad, but better, thanking God for all of the people who've popped up in life in one way or another to help me know I'm not on this journey alone.

The other day after my meltdown I took Ethan for a walk outside. The day had been unseasonably warm and the snow had left puddles everywhere. The sun was starting to set and the wind was picking up, but I really wanted to give him a chance to get out, so we started taking our usual walk.

My mom has this idea that Ethan should know how to walk and follow people, and it's something she does when she's watching him. I suppose she's right, because Ethan's natural tendency is to want to get ahead and do his thing. Do I agree that our busy street is the best place to teach him this? Eh, I don't know. But she's been taking him for walks nonetheless, and he enjoys them. She's also been trying to help him take notice of little details and things on the ground...and I have, too. Now he knows he has to stay on the sidewalk instead of wandering into people's yards. And obviously even if I'm not holding his hand I watch like a hawk to make sure he doesn't even get close to the street.

So we went for a walk, and Ethan said "Bye door!" to every garage door he saw. He loves garage doors and gets especially happy if someone has left theirs up. It's quirky but I had to smile. I watched him trudge along, bundled up in his heavy jacket and blue boots. He had discovered puddles last time with gramma and so we did lots of puddle stomping. Then he noticed some pebbles and started dropping them into the puddles, along with dropping clumps of snow into the muddy water.

As we walked I pointed out the chimney smoke, the clouds, airplanes and birds, and the way the wind moved the trees. There was nothing spectacular about any of it, really -- just a typical afternoon in Windsor, with the traffic picking up on the ground and in the air (with the airport nearby) as the day wound down. Yet something about taking the time to stop and really look at it, to engage all of the senses, made it lovely.

We got to the point where we had to turn around and I braced myself. Ethan is just two and a tantrum shouldn't really phase me. But for some reason every time I take him for a walk and we get to the turning around part I think about when I was about 18 and took Andy for a walk in our neighborhood. He was about 11 or 12 and at one point he just sat down and wouldn't budge. I began to panic more and more because he would not get up and I couldn't physically do anything to move him. Then he started making all kinds of noises and crying and I started crying too, out of desperation and shame. This woman came out of one of the houses and said, "Can I help you dear?" and I didn't know what to say. Right at that moment, Andy jumped up and decided to be on his way. I walked home feeling relief but all kinds of other feelings, too.

So we had to turn around and Ethan got mad and tried to throw himself on the ground. I grabbed his hand, told him he was going to walk back now, and that it was time to play our game. I began, "Ready? Set?"

"Go!" he filled in, and we started running together. Then we stopped and splashed in more puddles. He stepped on my pants and completely muddied me and his own jeans were soaked. As we headed back I kept thinking about the creative mix of relief, joy, sweetness, sadness, and love that was swirling around me.

And somehow, peace. The peace that comes when I let go, trust, love, and take a moment to breathe in the breeze, admire the pink-streaked sky, and stomp in puddles.

Thursday, February 18, 2010

Loss, Pain, and Ramblings

And then there are the days when I look back at some of what I've written here and feel like a fraud. Days like today.

Last night I was online looking at some autism stuff, and I only meant for it to be for a few moments before I hung out with Dan, but I was looking through this message board and couldn't seem to tear myself away. I don't know what I was looking for, exactly. Well, this woman had said her son had gotten a certain score on this particular autism assessment (the acronymn is CARS) and I remembered seeing that in one of Ethan's reports somewhere and not knowing what it meant. So this person went on to say that a score of under 30 indicates no autism, 30-36 is mild to moderate autism, and 37 to 60 is severe autism. I rushed to find Ethan's report. His score was 36.

Ugh. By the slimmest of margins, he missed being defined as "severely autistic." This got me, and got me bad. While there was a part of my brain that knew Ethan must be more than mildly autistic in order to be diagnosed so early, I still kind of kept it in my mind that he was mild to moderate. Not moderate bordering on severe.

After that point, there was no hanging out with Dan last night. I sunk low and then lower. I'm still low, although my feelings are all over the place. I've done more obessive internet searching. I found that kids do tend to drop a few points on the CARS scale as the years go by. And therapy, if the child's IQ is over 70, can be effective in bringing that score down, too. So then I started trying to figure out what Ethan's IQ is, but of course didn't know how to do that. Somehow, all of this irrationally seems better if he's just a "little bit" autistic. Then throughout all of my searching for answers that aren't really going to make me feel better, I kept seeing Ethan's smiling face, so trusting. Just love him, another part of me was saying. Stop this and just love him for the cute little guy that he is. Then I began to feel horrible for letting him down, for being disappointed.

In the midst of all that I began to feel angry at the world. Not at God this time, because I've spent enough time yelling at Him for most of my life. No, I was mad at the calm and collected people who diagnosed him in that stupid drab gray room and mad at every parent yelling at their "typical" kids in the store over idiotic stuff. I was mad at plastic families on TV commercials flashing pearly white smiles as they oohed and ahhed at Disney World. I was mad at my brother's family and parents soon to be relaxing on a beach in Florida and at people doing everyday things without the hugest of burdens on their backs.

I kept seeing every dream I'd had for Ethan, the dreams we subtly dream from day one and only realize once they've been ripped my mind I watched those dreams crash to the floor like a tower of blocks. Oh look! There's the marriage block. There goes me dancing with my son on his wedding day. Crash. There goes the grandchildren I won't have. There goes the college degree and fancy-shmancy job. Crash. There it all goes. I didn't realize how much I was still holding out hope, when I came across the stupid 36.

That's not to say all hope is lost. To be honest, right now I don't know what to hope for. These things seem shallow, yet I mourn them just the same. Does that mean Ethan's life is of less value if he does not achieve these things? Of course not. Yet I mourn. I cry and cry and have these weird feeling of wanting to be alone, yet wanting to be with people because I feel so alone. I miss my friends. I want to cry on someone's shoulder, yet no one I know truly understands. Except my mom, but if I hear Andy and Ethan mentioned in the same breath one more time, I'll scream.

So here I am, the side of me that rears its ugly head when I'm not having deep spiritual and psychological insights. The side my poor husband has to put up with more often that not.

Some people, maybe some of my Christian friends would say, "But what about prayer? You can believe for Ethan's healing." And it's not that I don't. I know God can heal today. In fact, there's a song by Jason Upton I've been playing for Ethan lately, and he loves it. He's starting to fill in words for me. It goes:

All things are possible when we realize
All things are not as though they seem
All things are possible when we realize
The truth is not trapped by what is seen on the outside
So don't ever give up
And don't ever give in
Don't setttle yourself for the widsom of men
Dispensational lies -- they have us hypnotized, compromised, but one-dimensional eyes,
They will never see the truth

I'll bop around in the car or in the house when I'm in a lighter mood, and hum the words and there is a part of me that believes them. There's just another part that knows that God doesn't always take the healing path. In fact, more often than not in these times, he doesn't choose to heal. And even if that's just because of a lack of people's faith in the miraculous or in His power, all I know is that I HAVE to learn how to live a joyful life, even if the answer in Ethan's case is NO. That is what I'm having trouble swallowing right now.

I think many times those of us who are believers have dreams and plans and ways we order our lives, and all the while we say we trust in God and he's our "Lord," we still maintain this illusion of being in control. For whatever reason, some of us aren't tested in this area. Some people get to keep playing the game. Some people get to keep giving God lip service while enjoying life on their own terms. And I think some of us who do believe in divine healing are actually, without realizing, wanting a miracle so we can get back to living our lives the way we thought it should be. I know that's how I feel right now. At least I'm being honest. That's why all of this is so ugly. That's why I could write and write today and yet never feel as if I've resolved a thing.

Wednesday, February 17, 2010

White as Snow

Yesterday morning I woke up and everything was white. We had had the kind of thick, wet snow that frosts the branches of trees and makes the drabness of winter beautiful again. The sight made me catch my breath. Then the pure white of the snow reminded me of a dream I had a year or more ago.

Considering I'm such a "deep," intropective person, my dreams are suprisingly benign. In fact, over the years I've kind of begged God for some sort of incredibly awesome, meaningful dream, or a "sign" in my dreams to help me through a difficult time. It just didn't happen. But over the past few years, I've had a couple of dreams that remained emblazened in my mind, dreams that I knew meant something important, even if I couldn't grasp the complete meaning right away.

In one, I was back in Springfield, on Sumner Ave., right near the old movie theater we used to catch $1 movies at. I looked down and saw a tornado barrelling down the street, about a mile away. Now, tornadoes are nothing new to my dreams. All of my life I've dreamed I was terrified and running from them. This dream was different. The tornado blasted down the road and I grabbed onto a slender tree nearby and held on for dear life. As the tornado went over there was nothing but wind and dark and terror and I could feel myself bending with the tree. But as quickly as it had came, after it went overhead the storm was gone, and, most bizarre -- the world had turned white. Somehow in its wake the tornado had left the world around me blanketed in snow. I don't remember there being any destruction left behind. Instead there was amazingly peaceful silence, and the pure white snow, sparkling in the sunshine. I remember being awed that I had survived and awed by the beauty of it all.

Since then the dream has stayed in my mind. And yesterday when the snow came I think I began to understand. Actually, the meaning came with the snow, my Bible study homework, and last night's Lost episode. An unlikely combination, I know. In the Bible study last week the lesson was all about our hearts being pure, and about the things we hold against God. I've known for awhile that I've held in what I feel is justifiable resentment and anger about many things in my life, both past and present. And we all know that holding onto those kinds of attitudes eats away at our insides. It's one thing to know and another to actually choose to let it go. So as I did that assignment, I found myself choosing to ask God to forgive me for letting things come between us. This is SO HARD to do when a part of me feels justified. But I keep looking around me. Unfairness is everywhere. Jamie should not have died. That guy at church that everyone prayed for should not have died and left his kids without a father. The guy in East Longmeadow, who lost his legs in Iraq and came home to rebuild his life, only to die in a car accident...evil is all around us. Death and sickness is all around us. Dwelling on the misery and unfairness of it all makes it all the worse.

Then, Lost las night, and this mysterious evil character that to me epitomizes the devil. Who knows what the final explanation will be, but that's how I see him. The thing that got me is that this character was not going and whispering in people's ears to steal, kill and destroy. Instead he was appealing to their sense of pride and anger and unanswered questions. "Why do you keep believing and following," he kept asking, "when no one ever tells you why certain things have happened? You DESERVE an explanation." And that reasoning drove certain characters to follow him...this quest to know, to finally understand.

And so back to the dream, the snow, the tornado. I think I know now that God was trying to tell me something. I think that autism is the storm. And if I hang onto Him for dear life, we will get through this, unscathed, but changed. The change is in me, in my soul. God truly does use our trials to perfect us. Or at least make us more like Him.

I can't tell you what a bad person I've been. Oh, not on the outside. I've been sweet and kind and unassuming and all of that, but since childhood, everything that happened to me didn't have the affect that it could have, on my heart. Instead of having more compassion on and reaching out to those who are disabled, different, or shunned, I ran from it all. I tried to wipe out any feelings of being "less" than anyone by all sorts of warped games...most of them involving comparing myself to other people and striving for "things" that might make me feel good. I strived for control, how to order my world and make it comfortable, inoffensive, and perfectly blended to everyone else in the land of surburbia. I've been in church all of my life and heard thousands of sermons but rarely took the effort to practically apply them, to really think about Jesus was saying and doing.

I'm not saying this to be down on myself and wallow; I just need to be blunt. These past few months have been miserable at times, and I've felt a hole in my heart so large that some days I physically feel an ache. But underneath it all is a truth, like the dream, that I am becoming the person I was always meant to be, that God always intended me to be. I don't mean to sound almost selfish here, because I know this isn't all about me, but I wonder: Can God use autism to make me well? Well in my soul, like the famous old song. There is nothing in life more valuable.

Wednesday, February 10, 2010

The Past is Not the Present

Tuesday was one of those days. Or really, it was the afternoon that got me. Tuesday afternoons are crazy. Right when Anna gets off the bus, Sara the occupational therapist arrives, followed by Jessica until 5:30. I'm usually trying to simultaneously cook dinner, talk with Anna about her day, and keep tuned into what the therapists are doing. This is manageable most days, but becomes challenging when Ethan doesn't particularly feel like having an appointment.

I can hardly blame the kid, the other day. He's had three solid weeks of being sick on and off and is getting over round two of strep throat. He's barely gotten to play outside, and then Tuesday morning when we did get out it was to go to the Bible study at church, where he played in the bigger kid nursery, at bit of a stressor for him. Then it was off to Target, a quick lunch, and down early for nap so he could be up for his appointment. The boy had been rushed around and had no down time all day, so I don't blame him for not wanting to be pushed to do stuff as soon as he woke up from his nap.

Sometimes he doesn't mind. Sometimes he ready to go "play," because it really is play, melded with learning. Most kids would be off and running for extra play time like this, but as I often have to remind Anna, for Ethan, the play sometimes can feel like taking medicine. It's not completely pleasant, although good for him.

But yesterday he didn't want to play, particularly at first. Ethan wanted to run away from Sara and do his own thing. And Anna's bus was late, so we had absolutely no time for her to just unload a bit about her day before Sara showed up. So here we were, Ethan clinging to my legs or running in another room, Anna talking non-stop, the therapist waiting to start, a half-made casserole on the counter. I often try to explain to Anna if she will just give me a few minutes to work to get Ethan settled with the therapist, I'll have a chance for more one-on-one time with her. There are times she just doesn't get it. She IS only five, I have to remember. And when Anna feels ignored, she doesn't get pouty but rather gets loud. She gets louder and wilder and does more and more zany things to get people's attention -- in this case, me and the therapists. Then when they stop to acknowledge her, Ethan thinks it's a free pass to book out of there and get to do his own thing.

In the end, after me almost bursting into tears and simultaneously almost losing it with Anna, everyone settled down and I had a chance to talk with her in the other room. That was a good thing, particularly because Anna is not one to open up about her feelings. Either that, or what she'll do sometimes is "milk" my sensitive nature to get sympathy. I walk a fine line sometime, wanting her to open up but trying to remember she's not me as a child, ready to cry at the smallest incident. That part is the hardest, not comparing myself to my daughter, because I had a little brother with autism, too. I can't tell you how many times I have to remind myself, "My story is not Anna's story, and Andrew's story is not Ethan's story."

So we talked a bit about why the therapists were there, and about Uncle Andy, who has what Ethan has but a more serious form of autism, which is why he's a grown-up but still doesn't talk much and has to have people always watching over him. The therapy would help Ethan, and it's therapy that Uncle Andy never had, so that's why before he goes to preschool he needs to have these appointments in the home for the next year --

"The next YEAR?!" Anna exclaimed, crestfallen, and I knew just where she was coming from. A year (or nine months, really) seems like a really long time when it involves people in your house every single weekday. To a five-year-old it must seem like an eternity.

"I know it's a long time, and I know it's hard," I told her, giving her a hug. I went on to explain that they have special groups for kids who had a brother or sister like Ethan, and wanted to know if she ever wanted to go to one. She nodded, gave me another hug, and the situation was done. We went back in the kitchen and played for a bit, and all the while there was a part of me that wanted to cry and laugh. The tears because I could feel myself teetering toward the painful territory of the past, and the desire is so strong within me that Anna is not damaged the way I was. The laughter because here I was, dealing with something I'd always feared and approaching painful situations I knew all too well, but was able to turn every negative thing that had happened to me over on its head. I hadn't felt comfortable ever sharing with my parents how upset I was about Andy's situation, but I could let Anna express her feelings about Ethan. I never had an option of attending a support group and not feeling so alone as a sibling, but I could give Anna that opportunity.

That's what makes all of this so complicated grasp onto the truth that Ethan, and Anna, have their own story, and history does not always have to repeat itself, even when some circumstances seem so familiar. Sometimes I feel as if something deeply personal is going on here, that God is trying to get a message through to me and this was the only way I'd understand. I don't have all the answers. But I do know that there is a verse that often runs through my head these days, about overcoming evil by doing good. Sometimes it feels is if that is what I'm doing, with God to strengthen me. I'm overcoming everything that happened to me, making different and better choices as I trust in Him. This seems like quite an unconventional way for God to work, and I'd certainly have chosen something different. Why is it that God works so thoroughly in us when we are in pain? Probably because it is only in those times that were are broken enough to pay attention and rely on Him.