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matrilThere are many events or changes that divide my life into sections - before and after high school or college, before and after marriage or becoming a mother. But the one that most defines the eras of my life has to be before and after Luke's diagnosis.
The changes didn't necessarily happen instantaneously, and in fact some shifts in our life began gradually before we had any notion of his autism. But I will always see my life in terms of Before and After. Where we live, how we live from day to day, our home and our possessions, are all deeply affected by Luke's autism. I'm not going to stick a label on it and call it either Good or Bad. As with most things, it's a complicated mix of positive, negative and indifferent, and there's no point in trying to pull out and identify every individual strand.
But here, in any case, is the immediate aftermath of Luke's diagnosis.
It was really rather underwhelming. We took him in and the doctor observed him playing for a while. She interacted with him a bit, and asked us a long list of questions. She analyzed the data, consulted with a few others, and then brought us back in a week later for the diagnosis. Autism is diagnosed entirely by symptoms. There's no other way. We don't know for sure what causes it, and so we can't do a brain scan or a blood draw or even a genetic test. All of those areas are being researched, and maybe someday there will be a more definitive test. (Honestly, I wouldn't be surprised to find a varying collection of causes depending on where each person falls on the spectrum.) For now, all they can do is observe and make educated guesses.
I wrote about it in early December of 2005: "So here it is. Luke has autism disorder. Apparently that's in the middle of the spectrum. He has trouble in all three areas - language, socialization and play.
"How do I feel? I can't give a single answer. It wasn't really a total surprise, but actually hearing it as certain is quite different from merely suspecting. Of course I had been holding out hope that he was perfectly normal, and that he would grow out of this. That's not an option now. But there is a sort of release in having it out. I don't have to bite my nails and wonder; I know.
"But my son! I never ever would have asked for this for my child. It's heart-rending, grief as real as any loss. I've had denial, anger, frenzied tears, bitterness, confusion - the whole gamut. I don't know if it'll ever settle completely. Yes, I have asked 'Why Luke?' and more selfishly, 'Why me?'"
It's not really sustainable to keep up a constant level of crushing sadness. Sometimes it would hit me and I would carry it around like a boulder, and then it faded into the background as we went about our regular lives. Other than increasing his Early Intervention services and preparing him for preschool, our usual routine was much the same. It was almost worse that we could be facing something so life-altering, and yet the world continued to move along as it always had, apparently unaffected.
The specialist couldn't give us any promises about Luke's future. At this early age all they knew for sure was that he showed the symptoms of a nearly-three-year-old with autism. But they certainly saw more than I did. I couldn't see how a language delay and a reluctance to make eye contact could translate into debilitating limitations. I was almost angry when, as the months passed, he began showing more traditional signs of autism like hand-flapping. The deeply irrational part of my brain wondered if the diagnosis had somehow caused it. His condition seemed more serious after than before, didn't it? However sternly I reminded myself that correlation does not equate to causation, the superstition lingered. Human nature craves obvious explanations and connections, not a vague, "That's just the way his brain is developing." Hence, I assume, all those crackpot conspiracy theories that try to explain what causes autism. I did my best to avoid those, but it left me with no real explanation at all.
It was hard telling people about it. You can't really send out a nice cheerful announcement. "Guess what? Our son was diagnosed with autism!" Everyone was very sympathetic, of course, but even the kindest reception couldn't do much to lessen the sting of saying those words over and over again. And I was growing increasingly twitchy about the common response: what amazing parents we must be to have such a special child. At times I had to bite back the snappish reply, "I don't want to be amazing! I don't want to be strong! I just want my son to talk!"
Oh, I know how hard it is to find the right words when someone is struggling or suffering. We try to find some sort of consolation or silver lining, something encouraging. But let me assure you that a special needs child is not a magical prize for extra-good parents. First of all, children aren't prizes. They are their own individual beings, sacred charges entrusted to imperfect people. Any parent could end up with a child with special needs, whatever their capacity. Do I believe that God gave Luke to us, specifically, for a particular reason? Yes, in the sense that I believe God is aware of each individual and the path of our lives, and guides each of us according to our needs and desires. But my husband and I are just another pair of imperfect people, muddling through as best we can. We mess up. We try again. And sometimes we wish it wasn't so hard. A lot of times.
Maybe you might wonder if I regret having a baby at such a young age. I wasn't quite 22 when Luke was born. I know I was inexperienced, only a few years into adulthood. But the truth is, I'm glad I was so young. We would have had children at some point, and assuming our genetic code had something to do with it, we still probably would have had a child with autism. And frankly, I don't think that any amount of time waiting, of emotional growth or maturity, could have made me more ready for Luke than I was in my early twenties. There's really no way to prepare for it other than learning the basics of responsibility and patience as a child and teenager. If I had been 33 or 44, I still wouldn't have been better prepared. And dealing with him physically, especially as he gets bigger and stronger? Oh, I am very glad I'm still young.
If I could go back, I'd do the same.
Only I would have gotten Luke services starting at birth.
Preschool was looming. We were surprised and happy to learn that our town's specialized preschool program was one of the best in the state. Very fortuitous. But he would be going all day long. I hadn't planned on sending my child off for a full day of school until he was at least five. From January 9th: "Luke is going to to turn three in just a few weeks, and then he's starting preschool. It really breaks my heart. He's so little! We can't even explain to him what's going on. And I'm afraid it won't do much good any way. He has about 25-30 words he uses regularly, and that's it....I wish I could just go with him to preschool. I wish I could just provide him with all the help he needs, set up my own one-on-one preschool. But I'm inadequate. Is anyone really adequate?"
This shows just how much can change in nine years: Luke still had a small but dependable lexicon of verbalizations. I longed for it to get bigger; I had no idea it would shrink almost to nothing. And now, I confess, I'm happy to send him off to school. I know he enjoys it and I enjoy the quiet time to myself without having to worry if he's breaking something or causing some other kind of trouble.
On his first day of school, the very day after his third birthday, my husband took the day off work. We put him on the bus, but then we went ahead and followed them in our car. We were absolutely terrified for him.
He had a blast. He got to ride on a bus! He got to go to a new place filled with exciting toys! No separation anxiety for him. Which was hard for us in an entirely different way. Luke has always been very loving, warming up to new people very quickly. That means that it's sometimes hard to tell if he feels any particular affection for me. I suppose a lot of mothers feel that, since they're the constant in their child's life rather than the exciting novelty. But it's multiplied for Luke. I know he loves me in a general sense, but it's harder to pinpoint any particular expressions of it.
Well, we were doing what we were supposed to, giving Luke a full day of therapy at preschool. I pretty much expected dramatic results. They were experts, right? Surely they could jumpstart his brain and get him talking. I was bemused to discover that they considered it a major accomplishment if, after a month or so, they had finally taught him to sit down and work for ten minutes. Just learning and following routines was huge. I didn't appreciate it at all, in the beginning. I wanted dramatic change. Honestly, this is why I never had any interest in the field of special education myself. It takes Herculean patience, long hours of repetitious work with only incremental results. There is a special place in heaven for people in special ed, I'm sure of it.
While Luke embarked on his school career, I was going through my own long, long process of learning to change my expectations. To celebrate that tiny incremental change, every little sliver of progress. I had to be patient with the fact that, because of asthma and starting school in the middle of cold season, he probably wouldn't get in a full, uninterrupted week of school until the spring. There were a lot of calls from the school nurse, and biting my nails every morning wondering if I should send him in and risk another call, or just keep him home. I really felt like a day at home was a terrible waste, because he needed his services so much, and I wasn't giving him any of that myself. And because I was still assuming that one day could enact that dramatic change.
It didn't. Nor months or years of school. Not dramatic change. Just quiet, slow progress. For Luke, for me, for all of us.
The changes didn't necessarily happen instantaneously, and in fact some shifts in our life began gradually before we had any notion of his autism. But I will always see my life in terms of Before and After. Where we live, how we live from day to day, our home and our possessions, are all deeply affected by Luke's autism. I'm not going to stick a label on it and call it either Good or Bad. As with most things, it's a complicated mix of positive, negative and indifferent, and there's no point in trying to pull out and identify every individual strand.
But here, in any case, is the immediate aftermath of Luke's diagnosis.
It was really rather underwhelming. We took him in and the doctor observed him playing for a while. She interacted with him a bit, and asked us a long list of questions. She analyzed the data, consulted with a few others, and then brought us back in a week later for the diagnosis. Autism is diagnosed entirely by symptoms. There's no other way. We don't know for sure what causes it, and so we can't do a brain scan or a blood draw or even a genetic test. All of those areas are being researched, and maybe someday there will be a more definitive test. (Honestly, I wouldn't be surprised to find a varying collection of causes depending on where each person falls on the spectrum.) For now, all they can do is observe and make educated guesses.
I wrote about it in early December of 2005: "So here it is. Luke has autism disorder. Apparently that's in the middle of the spectrum. He has trouble in all three areas - language, socialization and play.
"How do I feel? I can't give a single answer. It wasn't really a total surprise, but actually hearing it as certain is quite different from merely suspecting. Of course I had been holding out hope that he was perfectly normal, and that he would grow out of this. That's not an option now. But there is a sort of release in having it out. I don't have to bite my nails and wonder; I know.
"But my son! I never ever would have asked for this for my child. It's heart-rending, grief as real as any loss. I've had denial, anger, frenzied tears, bitterness, confusion - the whole gamut. I don't know if it'll ever settle completely. Yes, I have asked 'Why Luke?' and more selfishly, 'Why me?'"
It's not really sustainable to keep up a constant level of crushing sadness. Sometimes it would hit me and I would carry it around like a boulder, and then it faded into the background as we went about our regular lives. Other than increasing his Early Intervention services and preparing him for preschool, our usual routine was much the same. It was almost worse that we could be facing something so life-altering, and yet the world continued to move along as it always had, apparently unaffected.
The specialist couldn't give us any promises about Luke's future. At this early age all they knew for sure was that he showed the symptoms of a nearly-three-year-old with autism. But they certainly saw more than I did. I couldn't see how a language delay and a reluctance to make eye contact could translate into debilitating limitations. I was almost angry when, as the months passed, he began showing more traditional signs of autism like hand-flapping. The deeply irrational part of my brain wondered if the diagnosis had somehow caused it. His condition seemed more serious after than before, didn't it? However sternly I reminded myself that correlation does not equate to causation, the superstition lingered. Human nature craves obvious explanations and connections, not a vague, "That's just the way his brain is developing." Hence, I assume, all those crackpot conspiracy theories that try to explain what causes autism. I did my best to avoid those, but it left me with no real explanation at all.
It was hard telling people about it. You can't really send out a nice cheerful announcement. "Guess what? Our son was diagnosed with autism!" Everyone was very sympathetic, of course, but even the kindest reception couldn't do much to lessen the sting of saying those words over and over again. And I was growing increasingly twitchy about the common response: what amazing parents we must be to have such a special child. At times I had to bite back the snappish reply, "I don't want to be amazing! I don't want to be strong! I just want my son to talk!"
Oh, I know how hard it is to find the right words when someone is struggling or suffering. We try to find some sort of consolation or silver lining, something encouraging. But let me assure you that a special needs child is not a magical prize for extra-good parents. First of all, children aren't prizes. They are their own individual beings, sacred charges entrusted to imperfect people. Any parent could end up with a child with special needs, whatever their capacity. Do I believe that God gave Luke to us, specifically, for a particular reason? Yes, in the sense that I believe God is aware of each individual and the path of our lives, and guides each of us according to our needs and desires. But my husband and I are just another pair of imperfect people, muddling through as best we can. We mess up. We try again. And sometimes we wish it wasn't so hard. A lot of times.
Maybe you might wonder if I regret having a baby at such a young age. I wasn't quite 22 when Luke was born. I know I was inexperienced, only a few years into adulthood. But the truth is, I'm glad I was so young. We would have had children at some point, and assuming our genetic code had something to do with it, we still probably would have had a child with autism. And frankly, I don't think that any amount of time waiting, of emotional growth or maturity, could have made me more ready for Luke than I was in my early twenties. There's really no way to prepare for it other than learning the basics of responsibility and patience as a child and teenager. If I had been 33 or 44, I still wouldn't have been better prepared. And dealing with him physically, especially as he gets bigger and stronger? Oh, I am very glad I'm still young.
If I could go back, I'd do the same.
Only I would have gotten Luke services starting at birth.
Preschool was looming. We were surprised and happy to learn that our town's specialized preschool program was one of the best in the state. Very fortuitous. But he would be going all day long. I hadn't planned on sending my child off for a full day of school until he was at least five. From January 9th: "Luke is going to to turn three in just a few weeks, and then he's starting preschool. It really breaks my heart. He's so little! We can't even explain to him what's going on. And I'm afraid it won't do much good any way. He has about 25-30 words he uses regularly, and that's it....I wish I could just go with him to preschool. I wish I could just provide him with all the help he needs, set up my own one-on-one preschool. But I'm inadequate. Is anyone really adequate?"
This shows just how much can change in nine years: Luke still had a small but dependable lexicon of verbalizations. I longed for it to get bigger; I had no idea it would shrink almost to nothing. And now, I confess, I'm happy to send him off to school. I know he enjoys it and I enjoy the quiet time to myself without having to worry if he's breaking something or causing some other kind of trouble.
On his first day of school, the very day after his third birthday, my husband took the day off work. We put him on the bus, but then we went ahead and followed them in our car. We were absolutely terrified for him.
He had a blast. He got to ride on a bus! He got to go to a new place filled with exciting toys! No separation anxiety for him. Which was hard for us in an entirely different way. Luke has always been very loving, warming up to new people very quickly. That means that it's sometimes hard to tell if he feels any particular affection for me. I suppose a lot of mothers feel that, since they're the constant in their child's life rather than the exciting novelty. But it's multiplied for Luke. I know he loves me in a general sense, but it's harder to pinpoint any particular expressions of it.
Well, we were doing what we were supposed to, giving Luke a full day of therapy at preschool. I pretty much expected dramatic results. They were experts, right? Surely they could jumpstart his brain and get him talking. I was bemused to discover that they considered it a major accomplishment if, after a month or so, they had finally taught him to sit down and work for ten minutes. Just learning and following routines was huge. I didn't appreciate it at all, in the beginning. I wanted dramatic change. Honestly, this is why I never had any interest in the field of special education myself. It takes Herculean patience, long hours of repetitious work with only incremental results. There is a special place in heaven for people in special ed, I'm sure of it.
While Luke embarked on his school career, I was going through my own long, long process of learning to change my expectations. To celebrate that tiny incremental change, every little sliver of progress. I had to be patient with the fact that, because of asthma and starting school in the middle of cold season, he probably wouldn't get in a full, uninterrupted week of school until the spring. There were a lot of calls from the school nurse, and biting my nails every morning wondering if I should send him in and risk another call, or just keep him home. I really felt like a day at home was a terrible waste, because he needed his services so much, and I wasn't giving him any of that myself. And because I was still assuming that one day could enact that dramatic change.
It didn't. Nor months or years of school. Not dramatic change. Just quiet, slow progress. For Luke, for me, for all of us.
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Date: 2015-04-08 04:14 am (UTC)no subject
Date: 2015-04-08 12:37 pm (UTC)