Friday, April 30, 2010
In the afternoon I decided to take the kids outside and then spotted a bottle of bubbles I'd taken outside earlier but not opened. I haven't blown bubbles for a long time. Yesterday seemed like the perfect day to do it, with the wind having a mind of its own. We could actually see people up on the hill behind our house, chasing after a kite. It was a kite day, too.
So I took out the bubbles and Anna and Ethan went wild. Sometimes they don't care much about them but yesterday was different; maybe because of the wind. They kept running all across the yard, going after them. Of course Ethan was slower and Anna would stomp on most of the bubbles before he could get there. The wind was so unpredictable that they'd be floating one way and the next minute go off in the opposite direction. Some were whisked up in the air and more than once I heard Ethan watching them saying, "Up...up...up!" At one point the kids were actually tripping over themselves and each other to get to the bubbles first, and the wind was whipping my hair in my mouth and eyes. I kept looking at the wind bending the trees and quietly roaring through the leaves and loving how everything was beautifully wild and unpredictable. Like life. I can't describe it well but it's as if a sense of freedom was swirling in the air all around me. The freedom of letting go and letting the wind take me, take my life, take my family's lives...like the bubbles. I felt free, and carefree.
I didn't know until today that yesterday people from all over the nation and the world were joining together to blow bubbles to try to break a Guinness World Record and raise awareness for autism. Apparently the event was founded by a mom who realized that blowing bubbles was a way her son with autism could relate to and participate with students in his class on something.
I had no idea, as we stood out in the wind, laughing and chasing while the bubbles did their dance, and then disappeared.
Thursday, April 29, 2010
I am not saying any of this is right or wrong -- it just is what it is.
I am wondering if sometimes things are a bit harder for those of us living with special needs children because of the expectations all around us of what makes the ideal childhood (in particular), but even life. The ideal childhood of course most of all involves being loved and cared for, but it also means in our day, age, and nation -- birthday parties with bounce houses and sleepovers and trophies and swimming lessons and dance and trips to Disney World and baseball games. Again this is not necessarily wrong. But often this is what makes some of us feel complete. If we've done this, we've done what we can to provide our kids with a carefree yet hopefully somewhat challenging upbringing before sending them out into the world. And hopefully we've also instilled in them values and all of that along the way.
Sometimes I wish I had done a missions trip in another country to be able to see that not everyone is living this way. There are many, many places when not much revolves around pleasure but rather survival. Or I wonder what it'd be like to live 200 years ago, back when Mary and Laura Ingalls were happy to receive pennies in their stockings. We forget, sometimes. Or we just never knew.
Another thing: lately I've been wondering what is it about the word "smart?"
When Ethan's therapists first started coming, one of the earliest things they said to me was, "He's so smart!" Sometimes I wonder if it's because the impression on his initial evaluation did not quite paint that picture. Or maybe he just genuinely surprised them, or they really wanted to encourage me because they could see I was down. Over the past few months, whenever someone new sees him, it's one of the things they always say. Yes, he has at least a minor case of low muscle tone and is behind on many skills, but something he's doing is showing them he's smart.
But why is that so important? That's what I'm thinking. Suddenly I have a picture in my head of Forrest Gump, at the end of the movie when he finds out the little boy is actually his son and he stutters, tears in his eyes to Jenny, "Is he...is he...smart? Or is he...stupid?" Yet in the movie, his "intellectually challenged" character changes the world, and smarts had little to do with it.
I've even heard my mom do it, about Andy....talking about how such and such person in the group home does this and that, but Andy is smart and does...whatever the example is. Maybe it's just one area he's smart in, but we like to cling to those areas. There's nothing wrong with making note of and focusing on one's strengths. But sometimes when we're talking about someone's smarts, I feel as if we're subtly implying something about their value.
He's/she's so smart! It seems like we're always trying to prove. But why? Does that impact their worth?
We say that of course we don't judge or view someone's worth as related to their intelligence or accomplishments. We say it, but I can't help but wonder if this world we're immersed in doesn't rub off on us without us even realizing. We say smarts and talents aren't the most important thing, but when I used to bring Anna to gymnastics, all I heard were parents chatting about their kids' recent recitals and blue ribbons, understandably with pride.
I just wonder sometimes if we are proud of the most important things. I am still discovering what those things are. But I feel they have much to do with the way Jesus lived. They aren't as flashy and as noticeable...having a child who is humble, empathetic, kind, generous, helpful, perservering, forgiving, innocent. Yet they are of eternal value. Those are the things can transform the world.
Wednesday, April 28, 2010
We've been talking about being mad too and the other day he went over to the keyboard and started making up this song, banging on the keys and shouting, "I mad! I mad!" in different notes, along with the music.
And now he's discovering the bodily function thing. But he jumbles them together sometimes, so for example he'll cough and then say "Ah-choo!" Or he'll burp and then wonder why he can't make it happen again, but he can cough if he wants to. I can see the little wheels turning, questioning.
His therapists are teaching him to comment on what's happening around him (like "mmm oatmeal good!") and they made a little game out of saying the wrong thing to make it funny. So, something like, "Do trains go in the sky?" and with just a little encouragement he's figured out to say "no" or actually "nope!" pretty quickly. He's started to get the hang of this and the nope comes more easily then a yup. But I can't tell you how much it means to have him answer a question. Dan said that today that it was so neat to feel like he was actually having a little conversation with him. Most of the time we talk to Ethan and it's rather one-sided. It's a lovely thing to ask a question and get an answer! I don't care how simple that seems. It's still making me smile.
Saturday, April 24, 2010
I've thought a lot lately about the way suffering, heartache, tragedy reveal the hidden things inside us, and reveal what we're made of. Honestly, this has been troubling me, because I don't like what's inside of me. I feel as if -- well, I am not Kelly. I am a sloppy, over-emotional, self-centered, prideful mess at times. If I were a biblical character, I'd be doubting Thomas. I'd be Jonah running away. I don't feel like a "pillar of strength" very often. I have a tendency to be negative and fearful. I overthink everything and have trouble relaxing. In the midst of all this, I keep thinking, "How? How can I do this?" How do I, a person who used to stay up at night worrying about silly work deadines, not stay up at night worrying about Ethan's future? How does this person who used to sink to the lowest depths if someone offended me or if I made a wrong choice not sink down low if Ethan regresses in certain areas and I can't seem to find the right solution to help him? How does this person who has always had trouble controlling her emotions (including crying at every job she ever had) stay strong and not break down in front of her family (at least, not all the time)? How does this person who always pleaded, "Please God, please don't ever let me have to deal with autism in my children" take the cup that has been given me and live with joy, not bitterness?
Sometimes the questions pile up and then I lie awake at night waiting for answers. What's even harder is when there are no answers, no quick fix. There are so many Christians I know these days who are waiting for the quick fix, to go in a prayer line and just magically get delivered from their problems, but instead what comes to me is just a verse. It's on a billboard in Hartford right now: My grace is sufficient for you, for my power is made perfect in your weakness (2 Corinthians 12:9).
In those words I find peace but also frustration. You mean, I have to work my way through this? You mean, it's a process and it's going to be hard, God? I have never been one to want to work through things and push myself to do something painful. Exercise would be just one of many examples.
I know more than ever that I cannot do this on my own, and I cannot do this in my own strength. Overcoming will involve God working through me, because my own natural self has not been wired to be an overcomer.
His grace is sufficient. In the midst of my tears, as I sit here tonight in a quiet house, exhausted from thinking about what I could do better, differently, so Ethan would tone down his flare up of obessions lately and become less anxious.
His power is made perfect in my weakness. When I want to give up, give in, lose hope, or sink low.
The second part of that verse concludes: "Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." I don't know if I can "boast" about being the way I am. But I have to be completely honest...with myself, with my friends, with God. This is my mess. These are the raw materials that I am praying with time and trust will be made into something much more beautiful.
Wednesday, April 21, 2010
Perhaps I was too ambitious. I’m writing this from Baltimore, where we’ve been on a mini-family vacation for the past few days. Except it hasn’t been much of a vacation. Which, in some ways, is to be expected when you have two young kids. You don’t take vacations with them to actually relax. But we’ve kicked it up a notch here beyond tiring and moved over to downright stressful.
I shouldn’t overstate this. We have had some good times. Anna and I went to the aquarium today. The kids really enjoyed the children’s room in particular over at the science center the other day. And Ethan is almost always great in the car, even for long car rides. We’ve seen some new things and had some fabulous weather, and in particular have enjoyed walking by the harbor.
But Ethan is out of his element and has strayed way off once again. I thought maybe we’d be okay because of our trip to the water park a few months ago. I’m not sure what the difference is…when it comes to the autism spectrum, second-guessing and over-analyzing seems to come with the territory. I keep wondering: what has set him off? Was it that it was a three rather than one-night trip? That it didn’t involve water slides? That I tried to stop him from playing with doors and lights and fans right off the bat and stressed him out? I just don’t know.
The trip down was relatively uneventful and we got here on Sunday evening. I had tried to talk to Ethan about where we were going in advance but sometimes I just don’t know how much he understands, especially when we’re talking about going to a place he hasn’t been before. There’s a lot of talk about preparing kids with ASD for unfamiliar events, talking it up and showing pictures, etc., but I felt as if there was only so much I could do. So we got here in the hotel room and right away, the only way I can describe it is like this: when Ethan is nervous and in unfamiliar surroundings, he doesn’t immediately cry, show fear, or exhibit typical signs of stress -- instead he shoots off this laser beam that looks for light switches, doors, and fans, and he gets what I can only define as “stuck.” And so within a few minutes of us getting there, it was close and open doors, then run to the ceiling fan switch, then lights, then flush the toilet. Again and again and again. And he will act perfectly content unless you try to deter him from one of these activities. Then suddenly his usual level of tolerance disappears, and instead of crying for maybe 5 seconds and moving on to something else if he was at home, he’s on the floor wailing for minutes, and as soon as I turn my attention away, he’s back to his routine.
We haven’t quite figured out what to do in these situations. This is where the conflict between the ABA and Floor Time schools of thought loom large, and where I always seem to make an effort to find a middle ground yet sometimes fail spectacularly. ABA would say at the very most to let him play for a moment then stop him, and offer him some sort of reward or reinforcement for stopping. Floor Time would say to go with it, join in with the child in the activity, because to them what they are doing is purposeful and meaningful, and the only way to really motivate them to tone down that behavior is to feel accepted and loved. I’m not completely accurate here, but that’s the gist of it. I often end up vacillating…I’ll get fed up and attempt to redirect him over and over, thinking he’ll give up, but he never does. Then I’ll go the other way and do something silly like make up a song about the ceiling fan, and I’ll see that he enjoys it. I see the spark go off in his eyes that says, “Hey! Mom is appreciating something that’s important to me,” and he’ll come back to me and try to get me to sing it again. Floor Time would say this is exactly what we want to happen, because by joining in I’ve encouraged him to engage with a motivation that comes from the heart, and I can’t help but think -- yes, I understand that, but there are times when he needs to know and listen when I tell him he has to stop. He has to at some point gain some measure of self-control. But then again, I think, he’s only 2, which is challenging for any child, and so the vacillating goes on and on.
I think I could handle it if we were just talking about the hotel room. But since Ethan’s been going through this rough phase over the past month or so some of his fixations have been carrying over to other places. The difference is, when it’s semi-familiar territory, we can still work with him and get it under control. A strange city and strange hotel, not so much.
What I believe happens is this: the more strange the situation, the harder Ethan searches for those familiar special things that he likes and that bring him comfort. I’ve heard it described that these little quirks aren’t that much different than the way we bite our fingernails or overeat when we’re stressed, or gnaw away at the end of a pencil. So he zones in on these things, and once he gets hold of them, he just can’t let go.
The elevators here are another perfect example. At home Ethan will ask for elevators and when I tell him, “No, not today,” I might get a little squawk and then it’s done. Here when Ethan saw the elevators he started calling for them. And then when we rode on it a few times he was gloriously happy…but as soon as the ride was over he began sobbing. And once we got outside, he’d stop crying, but only so he could look for storm drains. But if I told him he couldn’t throw anything into the drains (another obsession), he’d dissolve again into a tantrum, which would quickly subside if he found something else he wanted to obsess about, like opening a door. The entire time we’ve been here, it’s been all about his obsessions, and if he doesn’t see any options available, he’ll sit in his stroller while we’re trying to look at the sites and say, “Done. Done. All done!” and whine.
Same for restaurants. Normally we can eat in a sit-down restaurant as long as we don’t have to wait too long and I have some snacks or other little distractions. When we stayed at the water park this worked out fine. Suddenly, we haven’t even been able to eat at Panera. His tolerance level has just completely disappeared. So we’ll be sitting there and he decides he’s done because he got stressed that the macaroni and cheese was too hot and there’s no distracting him, no deterring him. He just starts sobbing and wants to leave.
So, I am tired. So is Dan. There are a million routes I could go with this that would all take me on a not-so savory journey into self-pity and fear. The biggest one that wants to rear its head is: Please, tell me it won’t always be this way. And beyond that, I feel sad for my little boy when he’s like this. I feel sad that he’s so stressed and not enjoying himself and that I can’t seem to reach him.
I often think about all of the studies on autism and how so many of them talk about the complexities of the brain and all of the interrelated activities going on, about the different connections being made or not made and how it goes back to each person’s inner wiring at the core. For some reason this brings me a kind of comfort because I realize I’m not failing when I can’t come up with answers and solutions immediately. It’s not me. It’s so far beyond me. And to that end….I may not know, the researchers and doctors and scientists may not completely understand, but we have a God beyond comprehension who holds the answers to everything we can’t comprehend. Ethan’s creator isn’t puzzled by him. I can ask for that wisdom. If I can let go of the emotion, the frustration, the fear…I can trust, listen with different eyes and remember to see my boy with my heart. God, help me.
Saturday, April 10, 2010
The turning point I believe came this day back last spring when a mom and her friend brought a cute little boy with blonde hair named Jack to the play area. This was at the Enfield mall. Right away, I knew Jack was different. He flitted about from place to place. He made no notice of the other kids, and didn't look anyone in the eye, even his mom. I remember he marched up to her and said, "Up!" At that moment, something inside me told me that Jack had autism. And something else told me that Ethan did, too. They were the same but not the same. I can't say it was a shocking feeling...more of a revelation or realization. And in the midst of feeling pain and worry there was something else that gave me hope. That mom was so happy. She was bubbling, and she and her friend just loved Jack to pieces. You could see it in their eyes. I didn't see the self-consciousness, the comparisons. They were just loving him for who he was.
These days when I go to the play area I look for other "Jacks." I wonder: where are the other kids on the autism spectrum? Are they getting therapy or in preschool? Is there behavior such that their caregivers don't want to take them to places like the mall? If less than 1 in 100 boys is getting diagnosed, then there are obviously a lot of them out there. But where are they? And where are their moms?
People have mentioned support groups and I just don't want to do it right now, for a variety of reasons. One of my biggest concerns is that I will once again get caught up in the comparison game, when it comes to autism. I can see myself, getting to know people, trying to figure out what their child is doing versus mine, getting depressed if my son is not as far along, or meeting someone with a child five years older or 10 years older and getting frightened about the future. I'm scared because I want to meet people and share, but then I don't. I don't know if I've made enough progress yet to remember first and foremost, always, that Ethan is Ethan. Every child is different, and every child progresses differently.
There would be something so nice about it, though. It reminds me of all of the great conversations I have at MOPS, or of the two moms I overheard on the playground the other day, sharing their potty training woes. I would love to be at the playground with another mom and swap stories and ideas. Someone who would intimately understand our kind of unique questions (like Should I allow Ethan to keep playing with doors or make him stop? How much therapy is too much?). Of course, every child on the autism spectrum is so different, it's hard for another mom to generalize and give that type of advice. And I am blessed to have the opportunity to share with friends with typical kids who have lent listening ears, or talk online with friends who do have kids with autism. But it would be nice to see other kids and other moms or dads, in the flesh. Laugh about the idiosyncrasies and maybe not feel quite so alone.
It reminds me of the other day, at the end of one of Ethan's sessions when Jessica was talking about a new mom/child she's now seeing and how she was encouraging her about some things. I feel kind of embarrassed admitting, but as she was talking I was trying to picture this person and felt the deepest kind of empathy. I wondered what her little boy was like and where she lived. There's someone else out there! I know what you're going through! I was silently calling out to her.
Recently at Jessica's suggestion we've decided to sign Ethan up at a place in South Windsor that does all kinds of play groups/classes for kids with special needs. I am really looking forward to it, first and foremost because it sounds like a lot of fun for Ethan, if he can overcome his anxieties. And because there will be the opportunity to make connections. I just know they're out there, if I'm brave enough to make them.
Tuesday, April 6, 2010
All day over the weekend, particularly at other people's houses, Ethan just wanted to play with doors...again and again and again and again. He sang about the doors, he cried when taken away. Then he's got this taking off the diaper in the crib and peeing everywhere thing. And he's freaking out about a haircut. I honestly don't know what to do about that. He cries and cries now if scissors come near him. And he was so distracted, flitting about from one thing to the next.
After weeks like this I am so grateful to have therapists to talk to who can offer an objective opinion without a ton of emotion and all of the mommy guilt. And I'm thankful for friends to vent to, friends who understand, and friends who are offering their own support and advice. We all NEED that sometimes. We can't do this alone, whatever it is we're struggling with. I know that more than ever.
And so today I feel more grounded. Jessica told me quite simply that it seemed as if Ethan was just stressed and felt there were too many demands put on him, and he's just doing some things that give him a sense of control and calm. I know that I KNEW that. But somehow hearing someone else say it (actually, several "someones") has just filled my heart with compassion for him.
It's a new week and things are calming down. The six egg hunts and mounds of candy are over and done with. The loud and crowded family gatherings are done for now. We'll deal with next time when we get to it. And I'll probably be dealing with another wet crib (hopefully just wet and nothing else!) sometime tomorrow. But there are times I just need to take a deep breath and give my boy a hug. That's what we all need sometimes, when we're trying so hard and not always succeeding.