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matrilSo it's Autism Awareness month, and we all know what that means for me. Okay, maybe not. I'd like to hope I'm in a little better place this year. Maybe it's because I already got my rant out of the way in January.
The truth is, writing long soul-wrenching rants is very therapeutic for me. While my readers might come away from such a post thinking I'm broken, I actually feel much better after getting it all out in semi-eloquent prose. This month, though, I want to do something more than use LiveJournal as a kind of electronic therapist, by offering what little I can offer regarding this nebulous concept of Autism Awareness. I don't know what it's like to be autistic, and I don't know what it like for every parent of an autistic child. I only know what it's like to be Luke's mother. For whatever that's worth, I'm going to tell you what I know about that, in the form of weekly entries throughout this month. I'm going to be honest and thorough, and even more long-winded that usual. In order to more accurately capture some of the feelings I had over time, I'll include excerpts from my journals. I'll start with the beginning.
I had a relatively easy pregnancy. Yes, I was tired and nauseous and paranoid about every little twinge, but that's to be expected. I was in my senior year of college, and I continued going to class right until the day I went into labor, on a Friday evening, one week before Luke's due date. He was born about 18 hours later at 6:41 on January 25, 2003. (Squeamish about descriptions of childbirth? Skip to the next paragraph.) To be honest, I didn't feel any instantaneous bond of motherly adoration, partly because I was shaking like crazy and reeling from having my stomach suddenly flop back down the instant he was born, and partly because they had to check him out right away since the amniotic fluid had meconium staining. From my journal: "I trembled and shook and wondered when I would start feeling excited and happy. I certainly didn't feel like a mother - I still don't really...I can't believe he's mine...I feel like I'm borrowing, just pretending."
But he was fine, healthy and strong, and very easy to adore. He had one very minor case of hypospadias, and they said it could be repaired with simple surgery sometime between six months and toilet training. We adjusted to parenthood bit by bit; the sleep deprivation, the anxiety over whether he was eating enough and filling his diapers, the long, quiet moments of just staring at him and his perfectly formed face and hands and toes. After two weeks I started going back to class, and though I did have to step out now and then to feed him or calm his crying, I was able to finish the semester with good grades and graduate with a three-month-old. All that time he was meeting the usual milestones, smiling, rolling over, making eye contact and laughing when we tickled him.
After I graduated, we moved in with my parents for a year while my husband applied to graduate schools. I went from being a full-time student to spending all day long just taking care of Luke. It was very nice, though I did start to get antsy after a while. I didn't even have my own house to take care of. This is actually when I started writing full novels - I finished two of them within that year! Luke wasn't a demanding, exhausting baby, not at all. He was happy, easygoing, content as long as he had enough to eat and toys to play with. He continued to grow, sitting up, crawling, taking his first steps just before his first birthday. He was verbalizing too, just like all the developmental charts said he should: transitioning from cooing to babbling to single-word utterances.
From my journal in July of 2003: "Today is Luke's half-birthday. Happy 6-months old! He has grown so much. He has four teeth and another coming. He can sit up for a good long time without support. He coos and is starting to babble (more consonants, more purposeful). He is so interested in things and willing to smile and laugh at us often."
I had discovered the fascinating study of language acquisition in college, and I couldn't wait to witness it in my own child. I was ready to take meticulous notes of his progress as he moved into two-word utterances and on to sentences.
From November 3, 2003: "His vocal skills are most interesting. He likes to experiment. A couple of weeks ago he would make noises while inhaling instead of exhaling. Then he really liked to growl. Right now he's learned to trill with his tongue. Adorable! And of course he also coos and babbles - sometimes it sounds like deliberate words."
The primary stress in my life at that time had nothing to do with Luke. We were waiting to hear back from grad schools and find out where we'd be moving to, when we would be able to have our own home and get on with our lives. By the time Luke was one, I was already thinking how nice it would be to have another baby, but that was out of the question until we had more stability. Getting Luke's hypospadias surgery, as well, required that we get more reliable insurance. But it all worked out. My husband got accepted into a Theatre Education program and we moved to Boston in August of 2004.
Things were busy but good. From September: "Luke astounds me daily - so bright, always learning and exploring and enjoying everything. I wish he would talk, but at the same time the ways he communicates now are precious - little noises and gestures and facial expressions." By this point, I was pregnant with Emma. And for some reason this pregnancy hit me a little harder. When the symptoms came along in October or so, I wanted to do nothing but lie on the couch all day long. Luke did not approve of this itinerary. He was always trying to drag me off to play or read him a book.
This might be the hardest memory for me to consider. To recall that there was a short window of time when Luke wanted us to read to him, and to know that during much of that time I was too tired and sick to respond very well to it. I know that regret isn't healthy to dwell on, but if I could go back and relive any time in my life, I think it would be these months. Because I had no idea how soon that window would close. I didn't appreciate it at all. But how could I know?
In fact, as Luke's speech seemed less and less prone to progress, I began to worry that it was somehow my inattention during the pregnancy that had impeded his development, that because I hadn't been actively fostering his desire to learn, I had quashed it. It was a rather melodramatic worry, I know, but when your child isn't progressing the way you expect, of course you cast about desperately for any kind of explanation, even if it means blaming yourself. Other parents blame vaccines or dietary issues or whatever, and though they're wrong, I completely understand why they do it. You want so much to have some explanation, something you can point a finger at and say, "Aha! It's all your fault."
But autism was barely on the fringes of our awareness at this point. Our big medical concerns for Luke were his emerging asthma - colds would keep him up coughing all night - and the surgery for his hypospadias repair. We had taken him to a specialist and were put on the waiting list for scheduling the surgery. And then, in early January, right after we got back from Utah to attend a friend's wedding, the office called and said they had a slot open up for the very next day. We brought him into the Children's Hospital early that morning, and the surgery was over and done within hours. Still, I was a wreck. "It didn't matter that it was routine, that it was a very minor procedure - waiting for my son while he lay helpless on an operating table was one of the hardest things I've ever done." Oh, really? Just you wait. :P But he recovered quickly, and the most difficult thing from a practical standpoint was taking care of his dirty diapers for those first few days. It's all so distant now; most of the time I forget he ever had surgery.
Emma was born in April of 2005, and we were delighted to introduce Luke to his little sister. He was more interested in the card games we had brought to the hospital to keep ourselves busy during labor. He dumped them all out of their boxes and sorted through them for the entirety of his visit. Yes, I realize now that his fixation on certain tasks was an early symptom, but again, not really on our radar then. Right then, I was marveling. "I knew, certainly, that having Emma wouldn't make me love him any less, but I'm amazing at how much I've really felt my love intensified. Realizing how much he's grown and yet how vulnerable he still is, how much I miss being able to pick him up and snuggle him, how I long to have him know that he's still my precious little boy."
Adjusting to two children had its own share of stresses, but fun times as well. From May: "Luke is very interesting around Emma. Sometimes he climbs in her carseat and pretends to cry. Once he lay down beside her on her blanket and kicked his legs like she was doing! Other times, he tries to pick her up or push her in her swing. I certainly have to watch him closely around her." And I was impatient, but not overly worried about his speech. In June: "Luke is wonderful. Every now and then he'll actually say 'Mommy.' Mostly he still babbles. He has a few words he says regularly, mostly foods and toys. I have great difficulty curbing my impatience. I long to talk to him."
His doctor had been encouraging us to contact Early Intervention for a few months, but I dragged my feet, sure that he just needed a little more time, that no child of mine needed help learning to talk and various other manifestations of denial. I felt, contradictorily, like seeking help was a form of giving up, or of confirming the problem, making it real, whereas before it was only hypothetical. Not everyone's suggestions were helpful. I heard lots of "oh, often younger siblings are slower to talk because their older siblings talk for them." "Just compare him with his older siblings; then you'll have an idea of what's typical." And we, through gritted teeth, "He's the oldest." Then, "Oh, boys are usually slower. Don't worry about it!" I didn't want to worry about it; I didn't want it to exist. But I finally relented.
In July: "Tomorrow the Early Intervention people are coming to see if Luke needs help with talking. I admit I'm anxious, paranoid that I've done something wrong." What I didn't expect was that he scored under the average in every area of evaluation, not just speech. It hadn't even occurred to me that he might have delays in other areas. And thus began the creeping, growing dread that he had Something More. It was becoming harder to deny. He was reserved, often in his own world, slow to respond to his name, inconsistent with eye contact, very methodical and repetitive with his play. Had all of this been building slowly without my ever noticing it? Was I that blind? Not the sort of questions you want to have cycling through your mind over and over and over.
From September: "Early Intervention doesn't diagnose, but they suggest taking Luke to someone who can. I'm terrified that he'll be diagnosed as autistic...I know a diagnosis can help to specify treatment, but I'm not feeling very rational about it...he's my son and it's breaking my heart. I don't want to hear about this or that treatment for so-and-so's autistic son. He's my son and I don't want him to have problems. I want to talk to him, and see him understand, to make that connection and look at me with a smart face that knows. I want to have a glimpse of his mind; what's going on in his head. I know he's smart, I know he figures things out. He loves to work with things, press buttons, turn dials, flip switches...he just doesn't care about talking. He won't respond to his own name. Every time he ignores 'Luke' I feel like I've been beaten in the head. I'm smashing my head against a wall, smashing. I don't have the persistence. I'm an irritating broken record. 'Luke. Luke. Luke. Luke. Luke.'...Worst of all I'm afraid I'm being selfish, thinking only of how it affects me. Luke doesn't seem the least bit troubled by it...I worry about neglecting Emma in my concern for Luke, and neglecting Luke while caring for her. I need to know that I'm not an utter failure. Everyone else seems so put together and neat; beautiful houses. Everyone else's two-year-old talks."
October: "Luke has finally been scheduled to see a neurologist, in the latter half of November. I'm not really sure how to feel. It ought to help him, but part of me fears what they'll say. Autism, or some frightful syndrome? Maybe that I've screwed him up, and there's nothing to be done now? Absurd, I know, yet I still fear."
We went in just before Thanksgiving, and got the diagnosis shortly after the holiday. But that's all for the next post.
The truth is, writing long soul-wrenching rants is very therapeutic for me. While my readers might come away from such a post thinking I'm broken, I actually feel much better after getting it all out in semi-eloquent prose. This month, though, I want to do something more than use LiveJournal as a kind of electronic therapist, by offering what little I can offer regarding this nebulous concept of Autism Awareness. I don't know what it's like to be autistic, and I don't know what it like for every parent of an autistic child. I only know what it's like to be Luke's mother. For whatever that's worth, I'm going to tell you what I know about that, in the form of weekly entries throughout this month. I'm going to be honest and thorough, and even more long-winded that usual. In order to more accurately capture some of the feelings I had over time, I'll include excerpts from my journals. I'll start with the beginning.
I had a relatively easy pregnancy. Yes, I was tired and nauseous and paranoid about every little twinge, but that's to be expected. I was in my senior year of college, and I continued going to class right until the day I went into labor, on a Friday evening, one week before Luke's due date. He was born about 18 hours later at 6:41 on January 25, 2003. (Squeamish about descriptions of childbirth? Skip to the next paragraph.) To be honest, I didn't feel any instantaneous bond of motherly adoration, partly because I was shaking like crazy and reeling from having my stomach suddenly flop back down the instant he was born, and partly because they had to check him out right away since the amniotic fluid had meconium staining. From my journal: "I trembled and shook and wondered when I would start feeling excited and happy. I certainly didn't feel like a mother - I still don't really...I can't believe he's mine...I feel like I'm borrowing, just pretending."
But he was fine, healthy and strong, and very easy to adore. He had one very minor case of hypospadias, and they said it could be repaired with simple surgery sometime between six months and toilet training. We adjusted to parenthood bit by bit; the sleep deprivation, the anxiety over whether he was eating enough and filling his diapers, the long, quiet moments of just staring at him and his perfectly formed face and hands and toes. After two weeks I started going back to class, and though I did have to step out now and then to feed him or calm his crying, I was able to finish the semester with good grades and graduate with a three-month-old. All that time he was meeting the usual milestones, smiling, rolling over, making eye contact and laughing when we tickled him.
After I graduated, we moved in with my parents for a year while my husband applied to graduate schools. I went from being a full-time student to spending all day long just taking care of Luke. It was very nice, though I did start to get antsy after a while. I didn't even have my own house to take care of. This is actually when I started writing full novels - I finished two of them within that year! Luke wasn't a demanding, exhausting baby, not at all. He was happy, easygoing, content as long as he had enough to eat and toys to play with. He continued to grow, sitting up, crawling, taking his first steps just before his first birthday. He was verbalizing too, just like all the developmental charts said he should: transitioning from cooing to babbling to single-word utterances.
From my journal in July of 2003: "Today is Luke's half-birthday. Happy 6-months old! He has grown so much. He has four teeth and another coming. He can sit up for a good long time without support. He coos and is starting to babble (more consonants, more purposeful). He is so interested in things and willing to smile and laugh at us often."
I had discovered the fascinating study of language acquisition in college, and I couldn't wait to witness it in my own child. I was ready to take meticulous notes of his progress as he moved into two-word utterances and on to sentences.
From November 3, 2003: "His vocal skills are most interesting. He likes to experiment. A couple of weeks ago he would make noises while inhaling instead of exhaling. Then he really liked to growl. Right now he's learned to trill with his tongue. Adorable! And of course he also coos and babbles - sometimes it sounds like deliberate words."
The primary stress in my life at that time had nothing to do with Luke. We were waiting to hear back from grad schools and find out where we'd be moving to, when we would be able to have our own home and get on with our lives. By the time Luke was one, I was already thinking how nice it would be to have another baby, but that was out of the question until we had more stability. Getting Luke's hypospadias surgery, as well, required that we get more reliable insurance. But it all worked out. My husband got accepted into a Theatre Education program and we moved to Boston in August of 2004.
Things were busy but good. From September: "Luke astounds me daily - so bright, always learning and exploring and enjoying everything. I wish he would talk, but at the same time the ways he communicates now are precious - little noises and gestures and facial expressions." By this point, I was pregnant with Emma. And for some reason this pregnancy hit me a little harder. When the symptoms came along in October or so, I wanted to do nothing but lie on the couch all day long. Luke did not approve of this itinerary. He was always trying to drag me off to play or read him a book.
This might be the hardest memory for me to consider. To recall that there was a short window of time when Luke wanted us to read to him, and to know that during much of that time I was too tired and sick to respond very well to it. I know that regret isn't healthy to dwell on, but if I could go back and relive any time in my life, I think it would be these months. Because I had no idea how soon that window would close. I didn't appreciate it at all. But how could I know?
In fact, as Luke's speech seemed less and less prone to progress, I began to worry that it was somehow my inattention during the pregnancy that had impeded his development, that because I hadn't been actively fostering his desire to learn, I had quashed it. It was a rather melodramatic worry, I know, but when your child isn't progressing the way you expect, of course you cast about desperately for any kind of explanation, even if it means blaming yourself. Other parents blame vaccines or dietary issues or whatever, and though they're wrong, I completely understand why they do it. You want so much to have some explanation, something you can point a finger at and say, "Aha! It's all your fault."
But autism was barely on the fringes of our awareness at this point. Our big medical concerns for Luke were his emerging asthma - colds would keep him up coughing all night - and the surgery for his hypospadias repair. We had taken him to a specialist and were put on the waiting list for scheduling the surgery. And then, in early January, right after we got back from Utah to attend a friend's wedding, the office called and said they had a slot open up for the very next day. We brought him into the Children's Hospital early that morning, and the surgery was over and done within hours. Still, I was a wreck. "It didn't matter that it was routine, that it was a very minor procedure - waiting for my son while he lay helpless on an operating table was one of the hardest things I've ever done." Oh, really? Just you wait. :P But he recovered quickly, and the most difficult thing from a practical standpoint was taking care of his dirty diapers for those first few days. It's all so distant now; most of the time I forget he ever had surgery.
Emma was born in April of 2005, and we were delighted to introduce Luke to his little sister. He was more interested in the card games we had brought to the hospital to keep ourselves busy during labor. He dumped them all out of their boxes and sorted through them for the entirety of his visit. Yes, I realize now that his fixation on certain tasks was an early symptom, but again, not really on our radar then. Right then, I was marveling. "I knew, certainly, that having Emma wouldn't make me love him any less, but I'm amazing at how much I've really felt my love intensified. Realizing how much he's grown and yet how vulnerable he still is, how much I miss being able to pick him up and snuggle him, how I long to have him know that he's still my precious little boy."
Adjusting to two children had its own share of stresses, but fun times as well. From May: "Luke is very interesting around Emma. Sometimes he climbs in her carseat and pretends to cry. Once he lay down beside her on her blanket and kicked his legs like she was doing! Other times, he tries to pick her up or push her in her swing. I certainly have to watch him closely around her." And I was impatient, but not overly worried about his speech. In June: "Luke is wonderful. Every now and then he'll actually say 'Mommy.' Mostly he still babbles. He has a few words he says regularly, mostly foods and toys. I have great difficulty curbing my impatience. I long to talk to him."
His doctor had been encouraging us to contact Early Intervention for a few months, but I dragged my feet, sure that he just needed a little more time, that no child of mine needed help learning to talk and various other manifestations of denial. I felt, contradictorily, like seeking help was a form of giving up, or of confirming the problem, making it real, whereas before it was only hypothetical. Not everyone's suggestions were helpful. I heard lots of "oh, often younger siblings are slower to talk because their older siblings talk for them." "Just compare him with his older siblings; then you'll have an idea of what's typical." And we, through gritted teeth, "He's the oldest." Then, "Oh, boys are usually slower. Don't worry about it!" I didn't want to worry about it; I didn't want it to exist. But I finally relented.
In July: "Tomorrow the Early Intervention people are coming to see if Luke needs help with talking. I admit I'm anxious, paranoid that I've done something wrong." What I didn't expect was that he scored under the average in every area of evaluation, not just speech. It hadn't even occurred to me that he might have delays in other areas. And thus began the creeping, growing dread that he had Something More. It was becoming harder to deny. He was reserved, often in his own world, slow to respond to his name, inconsistent with eye contact, very methodical and repetitive with his play. Had all of this been building slowly without my ever noticing it? Was I that blind? Not the sort of questions you want to have cycling through your mind over and over and over.
From September: "Early Intervention doesn't diagnose, but they suggest taking Luke to someone who can. I'm terrified that he'll be diagnosed as autistic...I know a diagnosis can help to specify treatment, but I'm not feeling very rational about it...he's my son and it's breaking my heart. I don't want to hear about this or that treatment for so-and-so's autistic son. He's my son and I don't want him to have problems. I want to talk to him, and see him understand, to make that connection and look at me with a smart face that knows. I want to have a glimpse of his mind; what's going on in his head. I know he's smart, I know he figures things out. He loves to work with things, press buttons, turn dials, flip switches...he just doesn't care about talking. He won't respond to his own name. Every time he ignores 'Luke' I feel like I've been beaten in the head. I'm smashing my head against a wall, smashing. I don't have the persistence. I'm an irritating broken record. 'Luke. Luke. Luke. Luke. Luke.'...Worst of all I'm afraid I'm being selfish, thinking only of how it affects me. Luke doesn't seem the least bit troubled by it...I worry about neglecting Emma in my concern for Luke, and neglecting Luke while caring for her. I need to know that I'm not an utter failure. Everyone else seems so put together and neat; beautiful houses. Everyone else's two-year-old talks."
October: "Luke has finally been scheduled to see a neurologist, in the latter half of November. I'm not really sure how to feel. It ought to help him, but part of me fears what they'll say. Autism, or some frightful syndrome? Maybe that I've screwed him up, and there's nothing to be done now? Absurd, I know, yet I still fear."
We went in just before Thanksgiving, and got the diagnosis shortly after the holiday. But that's all for the next post.
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no subject
Date: 2015-04-02 07:49 pm (UTC)BTW, do you know when blue became the autism colour? We got an email from Daniel's school asking kids to wear blue clothes to show support for autism, or something along those lines. He has an official diagnosis now but was supremely uninterested in doing so -- in any event, he got a virus and didn't go to school today so it ended up being irrelevant.
no subject
Date: 2015-04-02 10:02 pm (UTC)It's funny how we worry so much about how this or that thing will affect our children, and then they come out just fine. I hesitate to say the "children are so resilient" line because they do suffer from disruption, just not usually in ways that are immediately recognizable to adults...but they do seem to bounce back from things better than I fear they will.
no subject
Date: 2015-04-02 11:02 pm (UTC)Children are resilient in ways that I think adults are not, but they're certainly not resilient in all ways (I always cringe when I see adults urging each other to totally uproot their lives and the kids will be OK because "Children are resilient!" or "Happy parents mean happy kids!" True under many circumstances, but by NO MEANS under all). And they do love consistency, and the endless play sessions in the speech therapist's waiting room and bus trips to get there were, if not exactly fantastic, at least very consistent :).
no subject
Date: 2015-04-03 02:03 pm (UTC)I agree with what you've said before though - I have autism awareness, but not autism 'pride'. If I could open up his cage and let him speak freely, I would immediately. He's sometimes so lost in there. I hate how the Autism Awareness movement has become hijacked by people that want me to feel guilty for wanting my son to be happier.