People are always saying you learn about unconditional love when you have kids. For the longest time I thought that you learn to love unconditionally when you discover the love you have for your children. I'm starting to realize that even more so, the reverse is true: the way we truly learn is by experiencing our kids' love for US.
Several years ago this community educator came to MOPS and spoke about some of the abuse situations she'd encountered while working with families. I remember her recalling a little boy who had been thoroughly mistreated by his mother...beyond that, abused really, and neglected, yet he still looked at her with such love in his eyes. And more than anything, he still wanted to be with his mom. He still even looked up to his mom and looked for her approval.
I heard her speak and wanted to weep, but her point was to stop being so hard on ourselves. The love that comes from a child is so pure, so forgiving, that, while we aren't given a license to mistreat them, we have to know that we're not scarring them the way we sometimes fear we are with our slip-ups and lost tempers here and there.
Today I was tired, my knee hurt, I was struggling with fighting off all kinds of icky thoughts, was snappish at times, lacked energy, and was anything but supermom. I wasn't horrible mom, but I wasn't anything special. Yet at bedtime Anna told me what she tells me almost every night. "I love mamma soooo much," followed by, "I love you more than all the love in the world," with many, many hugs and kisses. And Ethan? Well, Ethan. I can push and prod him and yell or cry and it's impossible to scare him away. He still breaks into a huge smile whenever I come home, still wants hugs, still acts so in love with me sometimes, despite all of this autism stuff.
I tucked them into bed tonight and thanked God I hadn't messed up too badly today. Then I heard Anna sweetly singing some sort of lullabye. A few minutes earlier Ethan had been attempting to sing "Twinkle Twinkle Little Star." These are the moments you just want to bottle up and hold forever. But beyond all of the cuteness I just wanted to bask in the moment of knowing that two little people loved me despite my being so profoundly imperfect. And hopefully, remember there is a God close to me who loves the same way.
Monday, December 28, 2009
Wednesday, December 23, 2009
A Beautiful Gift
Last night I couldn't sleep (too much sugar before bed!) and so I got up and finished a Karen Kingsbury book I'd been reading. The book is in part about a woman who was always afraid of losing her firefighter husband. On 9/11, her worst fears were realized, and eventually, through the healing process, she regrets spending so much time worrying instead of enjoying the time she had with him. Moving forward, she realizes she has to do what her husband had always urged her to do. Choose life (from Deuteronomy 30 - "I have set before you life and death, blessings and cursings. Now choose life...").
I closed the book and realized I had something to do. God's been kind of "whispering" in my ear about this for a few weeks. You know how there are times when you hear people say the same thing, in different ways and at different times, and you know there's a message that's trying to get through to you?
The past has been gnawing at me for awhile now. But it's time to let it go. It's time to stop approaching every episode that occurs with Ethan through the lens of my childhood. I thought of it the other day when I burst into tears because I was reminded of something that happened to me as a kid, with Andy. Again. It's not that it's wrong to grieve. It's when grieving becomes like an old tape that you pull out and play, more out of habit or obligation than anything else. I thought it while listening to Joyce Meyer the other day, who was talking about not staying stuck in the past and who quoted Isaiah 43, where it talks about not dwelling on the past because God is doing a new thing. I especially thought about it the other day when I ran into an old friend at the mall and was telling her about Ethan. The second sentence out of my mouth was, "Well, my brother has severe autism..."
I drove home thinking about that. Why had I said that? It was superfluous information. She didn't need all the details, yet I felt this urge to constantly link Ethan to my own past. The habit had become ingrained.
Beyond that, the habit of worry and fear and dread has become my method of operation for years and years. That's another thing I was feeling last night, as I finished the book. Regret. My eyes became opened just a little more to how much time I've wasted worrying. I thought of my pregnancy with Ethan, tinged with fear. And from the day he was born, there was always something to worry about. He had jaundice. He took awhile to smile. Nursing problems. Some of them may have been autism-related in retrospect, but that's not the point. I sat there last night and had trouble thinking of many times I had just sat and played and truly enjoyed my little one for who he was. True sorrow flooded within me, as a remembered his "babyhood," and how I was always looking for something to be wrong. Yes, something did turn out to be wrong, but what had been the point to my stress? Was I so eager to protect myself from being rocked by a bad diagnosis that I completely stopped to just enjoy the sweetness of every day?
My grandmother died years ago; we were very close. I am very much like her. She was a worrier, a fretter, a crier. She was also a sweet, dear woman who happened to develop Alzheimer's in her seventies. Someone said to me wryly not long ago that the years she lived with the disease were probably the only time in her life spent not worrying. The thought stopped me cold and made me want to smile and cry at the same time.
I can't live my life waiting for the other shoe to drop, waiting for everything to just collapse around me. I've not just done this with Ethan, I've done it with nearly everything. I've lived too long dreading tragic possibilities that may never occur. I've known this for some time, but it's one thing to know it intellectually, a whole other thing to feel it down deep inside.
So God and I had a little talk as I stared out the bathroom window in the middle of the night. The snow looked so beautiful in the darkness. As I prayed, I felt a peace come over me. Not only that, but the joy of a weight being lifted off my back. I looked out again and saw that I could see the stars, lots of them. More than a usual night, living so close to the lights of Hartford. A split second later, I saw a shooting star. Just one. I felt as if it were just for me.
This Christmas I'm thanking God for one of the most beautiful gifts I could ever receive: a different perspective. I'm thankful for a new desire to fully taste and breathe in each precious moment, and to stop holding the future captive with my fears. This will be a process, I know. But I'm ready to begin.
I closed the book and realized I had something to do. God's been kind of "whispering" in my ear about this for a few weeks. You know how there are times when you hear people say the same thing, in different ways and at different times, and you know there's a message that's trying to get through to you?
The past has been gnawing at me for awhile now. But it's time to let it go. It's time to stop approaching every episode that occurs with Ethan through the lens of my childhood. I thought of it the other day when I burst into tears because I was reminded of something that happened to me as a kid, with Andy. Again. It's not that it's wrong to grieve. It's when grieving becomes like an old tape that you pull out and play, more out of habit or obligation than anything else. I thought it while listening to Joyce Meyer the other day, who was talking about not staying stuck in the past and who quoted Isaiah 43, where it talks about not dwelling on the past because God is doing a new thing. I especially thought about it the other day when I ran into an old friend at the mall and was telling her about Ethan. The second sentence out of my mouth was, "Well, my brother has severe autism..."
I drove home thinking about that. Why had I said that? It was superfluous information. She didn't need all the details, yet I felt this urge to constantly link Ethan to my own past. The habit had become ingrained.
Beyond that, the habit of worry and fear and dread has become my method of operation for years and years. That's another thing I was feeling last night, as I finished the book. Regret. My eyes became opened just a little more to how much time I've wasted worrying. I thought of my pregnancy with Ethan, tinged with fear. And from the day he was born, there was always something to worry about. He had jaundice. He took awhile to smile. Nursing problems. Some of them may have been autism-related in retrospect, but that's not the point. I sat there last night and had trouble thinking of many times I had just sat and played and truly enjoyed my little one for who he was. True sorrow flooded within me, as a remembered his "babyhood," and how I was always looking for something to be wrong. Yes, something did turn out to be wrong, but what had been the point to my stress? Was I so eager to protect myself from being rocked by a bad diagnosis that I completely stopped to just enjoy the sweetness of every day?
My grandmother died years ago; we were very close. I am very much like her. She was a worrier, a fretter, a crier. She was also a sweet, dear woman who happened to develop Alzheimer's in her seventies. Someone said to me wryly not long ago that the years she lived with the disease were probably the only time in her life spent not worrying. The thought stopped me cold and made me want to smile and cry at the same time.
I can't live my life waiting for the other shoe to drop, waiting for everything to just collapse around me. I've not just done this with Ethan, I've done it with nearly everything. I've lived too long dreading tragic possibilities that may never occur. I've known this for some time, but it's one thing to know it intellectually, a whole other thing to feel it down deep inside.
So God and I had a little talk as I stared out the bathroom window in the middle of the night. The snow looked so beautiful in the darkness. As I prayed, I felt a peace come over me. Not only that, but the joy of a weight being lifted off my back. I looked out again and saw that I could see the stars, lots of them. More than a usual night, living so close to the lights of Hartford. A split second later, I saw a shooting star. Just one. I felt as if it were just for me.
This Christmas I'm thanking God for one of the most beautiful gifts I could ever receive: a different perspective. I'm thankful for a new desire to fully taste and breathe in each precious moment, and to stop holding the future captive with my fears. This will be a process, I know. But I'm ready to begin.
Friday, December 18, 2009
Little Breakthroughs
There was a study out just recently about people's happiness and the gist of it was, "If you think you're happy, you are." That's so simple, yet so profound. I understand the benefits of positive thinking now better than ever.
I could choose right now to think about how other kids Ethan's age are speaking in sentences. Or I could look at the strides he's making and feel the joy bubble over. These are some little things for which I am profoundly grateful:
- Improved joint attention, just in this past month. Joint attention means, when I point at something and tell him to look, does he look or just keep on staring at whatever he wants to stare at? This has really improved in particular in the last week. Joint attention means he cares enough to leave his own little world and check out what someone else is suggesting.
- New words and a return to words he was saying but had stopped saying (like kitty). Waving and saying bye-bye. Today I got a "hi" for the first time in a loooooong time. Lately I've been hearing lots of animal and food words. And my favorite - CD - is clear as day.
- His newfound love of hide and seek, complete with him saying the word hide or seek, and looking for me with pure joy on his face. He'll play this game with anyone at any time.
- This one was so cool. In occupational therapy today she was going through some of the usual things that are part of this assessment form called the Peabody that she's using to track his skills. At our outpatient appointment she really works on the skills rather than social stuff. His gross and fine motor skills are for the most part either on target or not that far behind. Well, as part of the assessment, she had him play with blocks, and the first step is to get him to stack 6, which he can do. The next level they check for right at 24 months is if they can imitate the person making the blocks into a train shape, complete with a block whistle, and then begin to move it and pretend it's a train. The first few times Diane did this (she tries it about one a month) he didn't even pay attention and didn't get that part at all. Today I could sense that he was watching more closely. Then, when Diane was done, he began to put the blocks in a row, attempted to create a whistle, and even said his own version of "Choo! Choo!" Both of us had our eyes bugging out of our heads, and I almost had tears in my eyes, I was so proud. That, right there, is the birth of pretend play. I can't tell you how proud I was of him.
I am amazed how play, or thinking about play, is dominating my life now, so much more than when Anna was Ethan's age. I'll give an example of how play with Ethan is fun and work at the same time. Today he wanted to play in the giant cardboard box again (from a printer we just bought; both he and Anna love it). So I thought about what we could do with the box that we hadn't done before. Balls came to mind. I found every ball of every shape I could and began putting them in with Ethan already in there. First I worked on the concept of "in" and "out," saying the word each time I put them in and he put them out. Then I worked on labeling the balls by color, size, etc. Then I switched it to counting the balls. Last I worked on having Ethan "call" the balls back to the box, to compliment the other work I've been doing to help him learn how to call people to him.
You have to switch up games with Ethan or he takes the game very literally and thinks you only play it that one single way. This teaches him to "think outside the box" (pun very much intended!) and also flexibility. We played these varying versions of the ball game for a half an hour, and he could've done it longer. For that, I am also grateful. Thirty full minutes of play with my little guy. Thirty minutes of him engaged with me, wanting to be with me. When Anna was little I hate to say I'd have been wanting to get away and check the internet or something. But Ethan is reminding me of the simple, refreshing joy of losing oneself completely in play and being complely immersed in any given moment.
I could choose right now to think about how other kids Ethan's age are speaking in sentences. Or I could look at the strides he's making and feel the joy bubble over. These are some little things for which I am profoundly grateful:
- Improved joint attention, just in this past month. Joint attention means, when I point at something and tell him to look, does he look or just keep on staring at whatever he wants to stare at? This has really improved in particular in the last week. Joint attention means he cares enough to leave his own little world and check out what someone else is suggesting.
- New words and a return to words he was saying but had stopped saying (like kitty). Waving and saying bye-bye. Today I got a "hi" for the first time in a loooooong time. Lately I've been hearing lots of animal and food words. And my favorite - CD - is clear as day.
- His newfound love of hide and seek, complete with him saying the word hide or seek, and looking for me with pure joy on his face. He'll play this game with anyone at any time.
- This one was so cool. In occupational therapy today she was going through some of the usual things that are part of this assessment form called the Peabody that she's using to track his skills. At our outpatient appointment she really works on the skills rather than social stuff. His gross and fine motor skills are for the most part either on target or not that far behind. Well, as part of the assessment, she had him play with blocks, and the first step is to get him to stack 6, which he can do. The next level they check for right at 24 months is if they can imitate the person making the blocks into a train shape, complete with a block whistle, and then begin to move it and pretend it's a train. The first few times Diane did this (she tries it about one a month) he didn't even pay attention and didn't get that part at all. Today I could sense that he was watching more closely. Then, when Diane was done, he began to put the blocks in a row, attempted to create a whistle, and even said his own version of "Choo! Choo!" Both of us had our eyes bugging out of our heads, and I almost had tears in my eyes, I was so proud. That, right there, is the birth of pretend play. I can't tell you how proud I was of him.
I am amazed how play, or thinking about play, is dominating my life now, so much more than when Anna was Ethan's age. I'll give an example of how play with Ethan is fun and work at the same time. Today he wanted to play in the giant cardboard box again (from a printer we just bought; both he and Anna love it). So I thought about what we could do with the box that we hadn't done before. Balls came to mind. I found every ball of every shape I could and began putting them in with Ethan already in there. First I worked on the concept of "in" and "out," saying the word each time I put them in and he put them out. Then I worked on labeling the balls by color, size, etc. Then I switched it to counting the balls. Last I worked on having Ethan "call" the balls back to the box, to compliment the other work I've been doing to help him learn how to call people to him.
You have to switch up games with Ethan or he takes the game very literally and thinks you only play it that one single way. This teaches him to "think outside the box" (pun very much intended!) and also flexibility. We played these varying versions of the ball game for a half an hour, and he could've done it longer. For that, I am also grateful. Thirty full minutes of play with my little guy. Thirty minutes of him engaged with me, wanting to be with me. When Anna was little I hate to say I'd have been wanting to get away and check the internet or something. But Ethan is reminding me of the simple, refreshing joy of losing oneself completely in play and being complely immersed in any given moment.
Wednesday, December 16, 2009
Challlenges and Rewards
I remember taking a quiz about five years ago, one of those silly things on the web. This one was titled "How Autistic are You?" and I just couldn't resist. I don't remember my score on this oh-so-scientific survey, but it wasn't anything off the charts. There were questions like: Do you avoid crowds? Not really. Do you have trouble reading people's emotions? Definitely not.
But as I've observed Ethan these past few months and learn what his therapy is attempting to teach him, I'm recognize some vaguely familiar themes...his inflexiblility at times; the way he gives up easily without persistening; his resistance to trying new things; his sometimes lack of curiosity. I've had to sit back, swallow and admit it -- that's me.
Thankfully, Ethan so far does not seem to have these traits to an exaggerated level the way some kids on the autism spectrum do. He doesn't exhibit the kind of rigidity that would make him insist have on having the same cup and plate and eat in the same spot and the same time, for example. He will continue persisting with something frustrating if encouraged, and he will explore objects for a bit and play with new toys, if they are intriguing enough. But it's work for him. And as I begin to help him, I realize it's work for me, too -- but we both have an amazing opportunity in front of us.
As a child people called me very creative and imaginative. I even attended a special program one summer for "creative kids." And to some extent that was true. The people at this camp were impressed with the Lego creations I'd build for my Fisher price people...only to be destroyed by my various invented natural disasters. Of course, they didn't know that I always played that game. I rarely "mixed things up." I had my familiar games, and that was that. I liked to reread books rather than find different ones. I liked to play the piano by ear and learn songs, true, but usually ended up going back to the same old songs, rarely learning new ones.
As an adult, I like to stick to my favorite restaurants and favorite dishes, because why be disappointed by something that doesn't taste as good? When playing with the kids I usually go back to the same routine and same games, rarely mixing things up. A few years ago I began to comment to Dan on how disappointed I was in my lack of curiousity or willinginess to try new things as a child, and how it's affecting me to this day. Basically, I don't know how many common objects truly work, because I never asked or paid attention, as a kid. One reason I didn't try new things is because I got frustrated easily and wasn't really taught to persist (my dad had a soft spot and was always doing things for us). So I learned to just stop when something got too hard.
But now, with Ethan -- now I have no choice but to think of a new way to approach a game...or Ethan will get "stuck" and want to play it only that way. The play will cease to be a learning experience and begin to become a routine. Now I have to learn to peservere as I work to engage him. When he's in a "mood" he won't willingingly play. You have to work and woo him, and you have to not take it personally, because he can act as if he couldn't care less and is completely ignoring you, but after much persistence, suddenly he jumps in and is ready to play. Now I have to keep learning, studying, exploring, and creating new ways to reach him.
I feel that as we work to try to rewire some of Ethan's brain, we are doing the same with mine. I am blessed to have the opportunity, because I don't think it ever would have happened, otherwise.
But as I've observed Ethan these past few months and learn what his therapy is attempting to teach him, I'm recognize some vaguely familiar themes...his inflexiblility at times; the way he gives up easily without persistening; his resistance to trying new things; his sometimes lack of curiosity. I've had to sit back, swallow and admit it -- that's me.
Thankfully, Ethan so far does not seem to have these traits to an exaggerated level the way some kids on the autism spectrum do. He doesn't exhibit the kind of rigidity that would make him insist have on having the same cup and plate and eat in the same spot and the same time, for example. He will continue persisting with something frustrating if encouraged, and he will explore objects for a bit and play with new toys, if they are intriguing enough. But it's work for him. And as I begin to help him, I realize it's work for me, too -- but we both have an amazing opportunity in front of us.
As a child people called me very creative and imaginative. I even attended a special program one summer for "creative kids." And to some extent that was true. The people at this camp were impressed with the Lego creations I'd build for my Fisher price people...only to be destroyed by my various invented natural disasters. Of course, they didn't know that I always played that game. I rarely "mixed things up." I had my familiar games, and that was that. I liked to reread books rather than find different ones. I liked to play the piano by ear and learn songs, true, but usually ended up going back to the same old songs, rarely learning new ones.
As an adult, I like to stick to my favorite restaurants and favorite dishes, because why be disappointed by something that doesn't taste as good? When playing with the kids I usually go back to the same routine and same games, rarely mixing things up. A few years ago I began to comment to Dan on how disappointed I was in my lack of curiousity or willinginess to try new things as a child, and how it's affecting me to this day. Basically, I don't know how many common objects truly work, because I never asked or paid attention, as a kid. One reason I didn't try new things is because I got frustrated easily and wasn't really taught to persist (my dad had a soft spot and was always doing things for us). So I learned to just stop when something got too hard.
But now, with Ethan -- now I have no choice but to think of a new way to approach a game...or Ethan will get "stuck" and want to play it only that way. The play will cease to be a learning experience and begin to become a routine. Now I have to learn to peservere as I work to engage him. When he's in a "mood" he won't willingingly play. You have to work and woo him, and you have to not take it personally, because he can act as if he couldn't care less and is completely ignoring you, but after much persistence, suddenly he jumps in and is ready to play. Now I have to keep learning, studying, exploring, and creating new ways to reach him.
I feel that as we work to try to rewire some of Ethan's brain, we are doing the same with mine. I am blessed to have the opportunity, because I don't think it ever would have happened, otherwise.
Tuesday, December 15, 2009
The Latest
Our "new normal" for the next year is taking shape. Our start has been a little bit bumpy, but not too bad overall. One thing I enjoy on a personal level is the interaction. I didn't realize that I actually feel energized at times having someone to talk to every day. Being at home with the kids, there were in the past days when I'd speak to no adult except the one at the Target or Big Y checkout, but I didn't realize that bothered me. I thought I was too introverted to really mind. Now I'm not so sure.
So, this is what's happening. We have Jessica, Ethan's main therapist, who's here Monday and Tuesday afternoons and Wednesday and Thursday mornings. Jessica is the overall overseer of Ethan's care, and the ABA provider, although we haven't done much ABA therapy yet. Mostly what she does is play with Ethan, try to engage him, while subtly working on speech at the same time. I LOVE Jessica. She's so positive, she's so encouraging, and she sees things in Ethan that I see. She sees that he has the ability to learn quickly. She's always telling me how smart he is. She has enthuiasm and genuinely likes Ethan. Even though he can be resistent with her, he likes her.
Sara is the occupational therapist and comes on Tuesday afternoons (partially overlapping with Jessica). She helps with Ethan's sensory issues (how he's reacting to sounds/lights/textures, etc.) and works on fine and gross motor skills. Again, most of this is done through play. Sara has only been here twice and Ethan's just starting to get to know her, but last week he started to open up and let her do a few things with him. Jen is the speech therapist and comes on Wednesday mornings (again, overlapping with Jessica). She's only been here once so far so it's hard to get a read on her, but Ethan seemed to already be starting to warm up to her.
Then on Fridays we go to Glastonbury for more occupational therapy with Diane. This was part of the interim therapies set up for Ethan when he was diagnosed, but Diane wanted to stay with him for awhile even after Birth to 3 got launched because she didn't want to interrupt his progress. A typical appointment with Diane usually involves things like: building blocks, doing puzzles, playing with playdough or shaving cream, crawling through a tunnel, or playing with balls. Again, it's all play, but play with a purpose. And Ethan needs to learn how to play. He needs to learn how to explore objects, use them correctly rather than just focusing on one part, use them creatively, and know how to transition to another toy appropriately. These are all things that come naturally to many children. Our appointments with Diane are sometimes tough because she has this habit of making discouraging comments (like "oh, you're just not going to give me any eye contact today, are you?") or shaking her head with resignation when he's not responding to her. It frustrates me, yet then she'll end our sessions saying positive things like, "I'm really impressed with his progress" or something to that affect, and I know she means it. I think she just gets frustrated with his aversive behavior.
That is Ethan's biggest challenge. He tends to just want to run away and not deal with a situation. He rarely tantrums...he just avoids. It's already getting better with Jessica, at home, but with Diane, who he's been seeing for two months, there are still issues. He's doing three times as many activities during a session than when he first started, but still, he tries to get up and go out the door. Sometimes I wonder if it's because he can sense Diane's negativity and frustration with him, as opposed to Jessica, who is so bubbly and positive. Other times I think about how much we're asking of him. Yes, we are mostly doing play, which should come naturally to a child, but it's a challenge for him, and we're talking about nearly 10 hours a week of focused play, with people he doesn't know that well.
One of my biggest challenges is to take a deep breath and take each day at a time. And to find that delicate balance of loving my child unconditionally while still wanting to help him reach his full potential. That sounds great in theory, but if you don't have the balance down, it's very easy to get tense with therapy...meaning, to think, "Are we doing the right therapy? Are we doing the right amount?" and to start mulling on "what-ifs." More than ever, I need to place Ethan in God's hands and believe He knows what's best for my child, and that if we're off somehow, He will show me.
So, this is what's happening. We have Jessica, Ethan's main therapist, who's here Monday and Tuesday afternoons and Wednesday and Thursday mornings. Jessica is the overall overseer of Ethan's care, and the ABA provider, although we haven't done much ABA therapy yet. Mostly what she does is play with Ethan, try to engage him, while subtly working on speech at the same time. I LOVE Jessica. She's so positive, she's so encouraging, and she sees things in Ethan that I see. She sees that he has the ability to learn quickly. She's always telling me how smart he is. She has enthuiasm and genuinely likes Ethan. Even though he can be resistent with her, he likes her.
Sara is the occupational therapist and comes on Tuesday afternoons (partially overlapping with Jessica). She helps with Ethan's sensory issues (how he's reacting to sounds/lights/textures, etc.) and works on fine and gross motor skills. Again, most of this is done through play. Sara has only been here twice and Ethan's just starting to get to know her, but last week he started to open up and let her do a few things with him. Jen is the speech therapist and comes on Wednesday mornings (again, overlapping with Jessica). She's only been here once so far so it's hard to get a read on her, but Ethan seemed to already be starting to warm up to her.
Then on Fridays we go to Glastonbury for more occupational therapy with Diane. This was part of the interim therapies set up for Ethan when he was diagnosed, but Diane wanted to stay with him for awhile even after Birth to 3 got launched because she didn't want to interrupt his progress. A typical appointment with Diane usually involves things like: building blocks, doing puzzles, playing with playdough or shaving cream, crawling through a tunnel, or playing with balls. Again, it's all play, but play with a purpose. And Ethan needs to learn how to play. He needs to learn how to explore objects, use them correctly rather than just focusing on one part, use them creatively, and know how to transition to another toy appropriately. These are all things that come naturally to many children. Our appointments with Diane are sometimes tough because she has this habit of making discouraging comments (like "oh, you're just not going to give me any eye contact today, are you?") or shaking her head with resignation when he's not responding to her. It frustrates me, yet then she'll end our sessions saying positive things like, "I'm really impressed with his progress" or something to that affect, and I know she means it. I think she just gets frustrated with his aversive behavior.
That is Ethan's biggest challenge. He tends to just want to run away and not deal with a situation. He rarely tantrums...he just avoids. It's already getting better with Jessica, at home, but with Diane, who he's been seeing for two months, there are still issues. He's doing three times as many activities during a session than when he first started, but still, he tries to get up and go out the door. Sometimes I wonder if it's because he can sense Diane's negativity and frustration with him, as opposed to Jessica, who is so bubbly and positive. Other times I think about how much we're asking of him. Yes, we are mostly doing play, which should come naturally to a child, but it's a challenge for him, and we're talking about nearly 10 hours a week of focused play, with people he doesn't know that well.
One of my biggest challenges is to take a deep breath and take each day at a time. And to find that delicate balance of loving my child unconditionally while still wanting to help him reach his full potential. That sounds great in theory, but if you don't have the balance down, it's very easy to get tense with therapy...meaning, to think, "Are we doing the right therapy? Are we doing the right amount?" and to start mulling on "what-ifs." More than ever, I need to place Ethan in God's hands and believe He knows what's best for my child, and that if we're off somehow, He will show me.
Thursday, December 3, 2009
Driving in Circles
Yesterday I went to visit Kelly and baby Jamie in the hospital, and every time I go to CCMC I end up not being able to figure out how to catch 91 north in Hartford. It was a lesson in futility...I'd strain my eyes for highway signs, get stuck behind puffing buses, and miss turns because I couldn't see due to being behind said buses. At one point I actually found a 91 N highway sign that had literally been scratched out so that I could not tell if the once-existing arrow had pointed straight or to the right.
I found myself completely infuriated, accidentially taking a wrong turn and being stuck driving over the river to East Hartford, knowing I'd have to turn around, go back to the city, and once again find the right way home. Somehow I managed to find Route 2 and realized I was on a path into the city I'd never taken. I'm not even sure of the bridge name, but I was crossing the river back into Hartford, straight into the heart of downtown, and the view was fabulous. I'd never realized Hartford could look so pretty, particularly at sunset, and twinkling with festive lights. The few moments back over the river and into the city were almost worth all of my wandering. I found myself thinking of that word again -- perspective.
Sometimes we all get frustrated when we are moving but seem to be getting nowhere...or going in the wrong direction...or forced to take a detour. We have our destination in mind and we just want to leave where we are and get to where we are going. We have plans and schedules, darn it, and no one and nothing should attempt to deter us.
But sometimes roadblocks force us to really stop and look at our surroundings. We notice things we'd never laid eyes on before, and something like appreciation fill us. It's like being stopped dead in a traffic jam, and noticing a patch of flowers on the side of the road that you never would have seen, rushing by at 70 miles an hour. Sometimes we're asked to take a path that seems to be completely unsavory. Yet at second glance, making our measured way along a route we didn't choose, we learn to appreciate the journey and discover the treasures it holds, if only we are looking.
I found myself completely infuriated, accidentially taking a wrong turn and being stuck driving over the river to East Hartford, knowing I'd have to turn around, go back to the city, and once again find the right way home. Somehow I managed to find Route 2 and realized I was on a path into the city I'd never taken. I'm not even sure of the bridge name, but I was crossing the river back into Hartford, straight into the heart of downtown, and the view was fabulous. I'd never realized Hartford could look so pretty, particularly at sunset, and twinkling with festive lights. The few moments back over the river and into the city were almost worth all of my wandering. I found myself thinking of that word again -- perspective.
Sometimes we all get frustrated when we are moving but seem to be getting nowhere...or going in the wrong direction...or forced to take a detour. We have our destination in mind and we just want to leave where we are and get to where we are going. We have plans and schedules, darn it, and no one and nothing should attempt to deter us.
But sometimes roadblocks force us to really stop and look at our surroundings. We notice things we'd never laid eyes on before, and something like appreciation fill us. It's like being stopped dead in a traffic jam, and noticing a patch of flowers on the side of the road that you never would have seen, rushing by at 70 miles an hour. Sometimes we're asked to take a path that seems to be completely unsavory. Yet at second glance, making our measured way along a route we didn't choose, we learn to appreciate the journey and discover the treasures it holds, if only we are looking.
Friday, November 27, 2009
Perspective
So here we go. The adventure begins. Ethan started with Birth to 3 a week ago and we're just getting everything into order now. We wanted to start slow and also slowly introduce new people. There are three: Jessica, who is the service coordinator and point person who's there to play with Ethan while working on basic life skills; Sarah, the occupational therapist; and Jen, the speech therapist. Right now he'll continue to see Diane on Fridays for occupational therapy in Glastonbury...we'll see how long that goes.
Jessica is great. I love her, and I'll tell you why: she sees things in Ethan I see. She's positive, and she's gushed over him like a mom when talking about him to the other therapists. She started first last week and then had both of them in the past few days.
Right now we're just doing play, because so much of learning is based around play. Kids NEED to play for so many reasons, and step one is really working to make play fun so Ethan can learn and also learn to relate to others through play. I spend a lot of time explaining this to Anna. I can see how having Birth to 3 here will be challenging on days she's off from school. I completely understand her viewpoint. She sees these people coming here to play and have fun with him, and me helping to play, and everything in her wants to fight to get attention too, because "hey, this is fun and I don't want to be left out!" I feel as if we're walking a very fine line between not wanting her to feel left out and get a bad attitude and needing to communicate that she has to give the therapists some space to work directly with Ethan. I've told her that to Ethan, play is work. I've compared it to taking medicine or getting a shot. I think that helped her a bit, but that kind of perspective is pretty tough for a five-year-old.
So they play, and while they're doing so they're working on things like eye contact, on Ethan reaching out and requesting for something by looking at you and beginning to use words. There are skills that seem so obvious and natural to most of us that he has to work at or be prodded to learn. Even exploration of objects...the boy needs curiosity! He's getting better at this. In a perfect world, Ethan will pick up a toy and test it, try it, do different things with it, use it appropriately, but get a little creative with it. In most cases, Ethan is not the sterotypical "autistic kid staring at a wheel on a car spinning." He'll use toys appropriately (although he gets kind of "stuck" on those with lots of lights and music. The challenge is getting him to stick with a toy for awhile, then move onto another toy for awhile, be creative, and maybe even interactive. He's more likely to play for a minute, on his own, then even if he's having fun, get up and do something repetitive or comfortable, like try to climb up on the kitchen table or to get into the refrigerator. From what I've read, this has something to do with emotional regulation. It's like, he has these feelings sometimes, and even if they're good feelings, he doesn't quite know what to do with them. He's sort of overwhelmed by senses and emotion, and the way to calm himself down a bit is to do something predictable, like opening and closing a drawer, that makes him feel kind of safe and settled.
We've started all of this and I (like Ethan, I guess) struggle with these feelings that want to overwhelm me. I want to shout from the rooftops: "Please work! Please, please, please help my little boy!" I come at this I think with a bit of a different perspective than many parents. My only experience with autism is so incredibly severe that I struggle with hope. Can I dare to hope? There are people out there (understandably so) who go into this hoping and praying that these therapies will just make everything go away and their child will somehow lose the autism diagnosis. That happens, but not often. I almost approach it from the other way. Everything in me says, "Please, just help him to talk! Please...I know he may be different and quirky and stand out from his peers and all of that but please...I want to talk with him, back and forth, and for him to not be a grown-up sitting in a corner and moaning and hitting himself when he's frustrated and having bathroom accidents. I want him to be able to care for himself and not rely on caretakers who get paid $10 an hour and want to be somewhere else. I want him to be able to harness that musical interest inside of him and not let it go to waste. I don't want him to be trapped inside himself, never realizing the potential that is there." I don't know if the "please" is directed at the therapy or God or just somewhere out there into the atmosphere. I need help hoping. I guess that is what I direct to God. I need help hoping and having faith because I fear disappointment and more pain.
There are people out there who are brave enough to believe for big things. They take their faith and they don't "settle." And they are also brave enough and strong enough to believe in God's goodness even if they don't get all of it. I want to be one of those people. I heard Joyce Meyer once say she'd rather believe big and get half of it than believe for nothing and get all of it.
Sometimes I think of Beth Moore and the session in Esther when she swallows her fear and decides to go before the king. "If I perish, I perish," was her approach, but she'd decided the fear was no longer going to stop her from doing the right thing. In the study Beth Moore talks about the way we torture ourselves with what-ifs, and that our goal should be to get to a place where we can truly trust, "If ______ happens, then God will take care of me." There are so many blanks that could be filled in, so many unknowns. Getting to that place is a true dying to our selves and stepping into a life where we relinquish our illusion of control.
The control illusion can be such a trap when it comes to all of this autism stuff, especially for a mom. I feel this all of the time and from the blogs I've discovered online there are so many moms of kids on the autism spectrum dealing with the same feelings. We are the primary caregiver...it's like what I'll hear many times in MOPS, about how important our role as moms is...but reversed. That's meant to be an encouragement but with autism it feels more like a weighty assignment impossible to complete. This voice says: "He's depending on you! You have to get him the help he needs...the exact right help, the exact right amount of help, and you must take advantage of every opportunity you have to help him learn and grow. And you must make sure your daughter is not neglected and doesn't develop resentment, and you must not forget your husband, and you must take care of yourself, and..." The list goes on and on. There are a lot of "you's" in this paragraph. That's what stands out. That that line of thinking takes me back to a place where I think I have to do it all and once again I wrestle control away from God. I have to be responsible, yes, but I can't be responsible for being perfect and somehow "fixing" this entire situation.
That can seem like a frustration, but I long to see it more clearly -- as a blessing.
Sometimes I think about how much of this...Ethan's diagnosis, my past, how I approach the situation...depends on perspective. I have seen my past, growing up with Andy's autism, as haunting me and at times sucking away my ability to hope and be positive. Yet what if I was to remember that God truly has taken care of Andrew, that he became (at least a bit) verbal when no one expected him to (age 12), that he still learns today and that he lives in a nice home and is relatively happy? "If __, then God," I can remember. I could think about how I felt overly responsible as a child and how unfair all of that was, or I could realize that that experience will make me more sensitive to preventing the same thing from happening to Anna. I could be bitter about the way my parents didn't provide much comfort or security for me and Nate throughout the situation...there was a real disconnect between their strong Christian faith and how they approached Andy's autism. I never got a sense that God would take care of us or that it was okay to trust Him, that He wasn't out to get us. Or I could be determined to find the good in the situation and learn how to keep my emotions in check in front of my daughter so she is not left feeling scared and alone. I could think about how hard it is to have my only prior familiarity with autism be such a severe case, and how that wants to gnaw at my faith and hope, or I could view that as making me more profoundly grateful and appreciative when Ethan makes even modest gains. His accomplishments will seem even bigger and better when I compare them to the standard of severe autism that received essentially no early intervention.
For so long I've felt as if my past was "damning" and that I was stuck in some sort of repeating pattern that was almost like a cosmic joke on God's part. Or Satan's. Kind of like, "Ha-ha! Thought you were done dealing with this...I'll throw these demons right back at you. I'll give you everything you ever feared and see how you deal with THAT." But maybe there is an opportunity here to learn than that my past can serve me well -- and that it doesn't have to repeat itself. It reminds me of one of my favorite verses, from somewhere in Romans. Do not be overcome by evil, but overcome evil by doing good.
Jessica is great. I love her, and I'll tell you why: she sees things in Ethan I see. She's positive, and she's gushed over him like a mom when talking about him to the other therapists. She started first last week and then had both of them in the past few days.
Right now we're just doing play, because so much of learning is based around play. Kids NEED to play for so many reasons, and step one is really working to make play fun so Ethan can learn and also learn to relate to others through play. I spend a lot of time explaining this to Anna. I can see how having Birth to 3 here will be challenging on days she's off from school. I completely understand her viewpoint. She sees these people coming here to play and have fun with him, and me helping to play, and everything in her wants to fight to get attention too, because "hey, this is fun and I don't want to be left out!" I feel as if we're walking a very fine line between not wanting her to feel left out and get a bad attitude and needing to communicate that she has to give the therapists some space to work directly with Ethan. I've told her that to Ethan, play is work. I've compared it to taking medicine or getting a shot. I think that helped her a bit, but that kind of perspective is pretty tough for a five-year-old.
So they play, and while they're doing so they're working on things like eye contact, on Ethan reaching out and requesting for something by looking at you and beginning to use words. There are skills that seem so obvious and natural to most of us that he has to work at or be prodded to learn. Even exploration of objects...the boy needs curiosity! He's getting better at this. In a perfect world, Ethan will pick up a toy and test it, try it, do different things with it, use it appropriately, but get a little creative with it. In most cases, Ethan is not the sterotypical "autistic kid staring at a wheel on a car spinning." He'll use toys appropriately (although he gets kind of "stuck" on those with lots of lights and music. The challenge is getting him to stick with a toy for awhile, then move onto another toy for awhile, be creative, and maybe even interactive. He's more likely to play for a minute, on his own, then even if he's having fun, get up and do something repetitive or comfortable, like try to climb up on the kitchen table or to get into the refrigerator. From what I've read, this has something to do with emotional regulation. It's like, he has these feelings sometimes, and even if they're good feelings, he doesn't quite know what to do with them. He's sort of overwhelmed by senses and emotion, and the way to calm himself down a bit is to do something predictable, like opening and closing a drawer, that makes him feel kind of safe and settled.
We've started all of this and I (like Ethan, I guess) struggle with these feelings that want to overwhelm me. I want to shout from the rooftops: "Please work! Please, please, please help my little boy!" I come at this I think with a bit of a different perspective than many parents. My only experience with autism is so incredibly severe that I struggle with hope. Can I dare to hope? There are people out there (understandably so) who go into this hoping and praying that these therapies will just make everything go away and their child will somehow lose the autism diagnosis. That happens, but not often. I almost approach it from the other way. Everything in me says, "Please, just help him to talk! Please...I know he may be different and quirky and stand out from his peers and all of that but please...I want to talk with him, back and forth, and for him to not be a grown-up sitting in a corner and moaning and hitting himself when he's frustrated and having bathroom accidents. I want him to be able to care for himself and not rely on caretakers who get paid $10 an hour and want to be somewhere else. I want him to be able to harness that musical interest inside of him and not let it go to waste. I don't want him to be trapped inside himself, never realizing the potential that is there." I don't know if the "please" is directed at the therapy or God or just somewhere out there into the atmosphere. I need help hoping. I guess that is what I direct to God. I need help hoping and having faith because I fear disappointment and more pain.
There are people out there who are brave enough to believe for big things. They take their faith and they don't "settle." And they are also brave enough and strong enough to believe in God's goodness even if they don't get all of it. I want to be one of those people. I heard Joyce Meyer once say she'd rather believe big and get half of it than believe for nothing and get all of it.
Sometimes I think of Beth Moore and the session in Esther when she swallows her fear and decides to go before the king. "If I perish, I perish," was her approach, but she'd decided the fear was no longer going to stop her from doing the right thing. In the study Beth Moore talks about the way we torture ourselves with what-ifs, and that our goal should be to get to a place where we can truly trust, "If ______ happens, then God will take care of me." There are so many blanks that could be filled in, so many unknowns. Getting to that place is a true dying to our selves and stepping into a life where we relinquish our illusion of control.
The control illusion can be such a trap when it comes to all of this autism stuff, especially for a mom. I feel this all of the time and from the blogs I've discovered online there are so many moms of kids on the autism spectrum dealing with the same feelings. We are the primary caregiver...it's like what I'll hear many times in MOPS, about how important our role as moms is...but reversed. That's meant to be an encouragement but with autism it feels more like a weighty assignment impossible to complete. This voice says: "He's depending on you! You have to get him the help he needs...the exact right help, the exact right amount of help, and you must take advantage of every opportunity you have to help him learn and grow. And you must make sure your daughter is not neglected and doesn't develop resentment, and you must not forget your husband, and you must take care of yourself, and..." The list goes on and on. There are a lot of "you's" in this paragraph. That's what stands out. That that line of thinking takes me back to a place where I think I have to do it all and once again I wrestle control away from God. I have to be responsible, yes, but I can't be responsible for being perfect and somehow "fixing" this entire situation.
That can seem like a frustration, but I long to see it more clearly -- as a blessing.
Sometimes I think about how much of this...Ethan's diagnosis, my past, how I approach the situation...depends on perspective. I have seen my past, growing up with Andy's autism, as haunting me and at times sucking away my ability to hope and be positive. Yet what if I was to remember that God truly has taken care of Andrew, that he became (at least a bit) verbal when no one expected him to (age 12), that he still learns today and that he lives in a nice home and is relatively happy? "If __, then God," I can remember. I could think about how I felt overly responsible as a child and how unfair all of that was, or I could realize that that experience will make me more sensitive to preventing the same thing from happening to Anna. I could be bitter about the way my parents didn't provide much comfort or security for me and Nate throughout the situation...there was a real disconnect between their strong Christian faith and how they approached Andy's autism. I never got a sense that God would take care of us or that it was okay to trust Him, that He wasn't out to get us. Or I could be determined to find the good in the situation and learn how to keep my emotions in check in front of my daughter so she is not left feeling scared and alone. I could think about how hard it is to have my only prior familiarity with autism be such a severe case, and how that wants to gnaw at my faith and hope, or I could view that as making me more profoundly grateful and appreciative when Ethan makes even modest gains. His accomplishments will seem even bigger and better when I compare them to the standard of severe autism that received essentially no early intervention.
For so long I've felt as if my past was "damning" and that I was stuck in some sort of repeating pattern that was almost like a cosmic joke on God's part. Or Satan's. Kind of like, "Ha-ha! Thought you were done dealing with this...I'll throw these demons right back at you. I'll give you everything you ever feared and see how you deal with THAT." But maybe there is an opportunity here to learn than that my past can serve me well -- and that it doesn't have to repeat itself. It reminds me of one of my favorite verses, from somewhere in Romans. Do not be overcome by evil, but overcome evil by doing good.
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