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matrilAs I said before, everything in our lives was affected by Luke's diagnosis, and continues to be. Some of those effects are obvious, like having him in school full time since age three, but there were other, broader changes, rippling outward pretty much indefinitely.
We had intended to stay in Boston for two years for my husband's graduate program.
It'll be eleven years this August.
Once he finished, we assumed, we'd be able to cast a wide net for potential jobs. We weren't too picky about where we ended up settling. I preferred the East Coast, but if we found a great job in Minnesota, sure, we'd take that. Instead, by the time he graduated, Luke was already enrolled in preschool. A really good preschool. So we stayed. And I love the area; I'm quite happy to settle here. It just sort of happened by necessity rather than choice.
Theater teacher jobs aren't exactly abundant. Mark went ahead and got an English teacher certification as well, but he still wasn't able to find any full-time teaching jobs until the fall of 2007. During the 06-07 school year, he worked as a long-term sub for an English teacher on maternity leave, and when that ended a little over halfway through the year, we made do with regular substitute teaching. Of course I have no doubt we would have struggled with job searches no matter how widely we searched - no one goes into the field of teaching because it's an easy, lucrative business - but being limited to the immediate area was definitely an extra stress we hadn't anticipated.
Then there was the question of having autism as a hereditary trait in our family. They haven't pinned down exactly how much genetics come into play, but there's definitely some correlation. We found ourselves searching the family tree for possible undiagnosed cases, including ourselves. Were my quirks and social anxieties just a form of high-functioning autism? Mark taught himself to read extremely early, almost concurrent with learning to speak - maybe that was hyperlexia, a condition related to the spectrum. Maybe the very things we valued about ourselves - outside-the-box thinking, geekiness, whatever - were traits that had concentrated themselves into a son with severe limitations. Again, these are not the sort of thoughts you want to have circling through your mind.
With that, there was the looming question of what Luke's autism meant for our other children. We watched Emma's progress far more anxiously now, waiting for any of those warning signs that might tell us she was on the spectrum as well. Even with such scrutiny, however, nothing seemed to show up. We were deeply relieved, but even her exciting progress was bittersweet for us. That word showed up frequently in my journal entries about her. From November 2006: "And this week - Emma put two words together!! 'Juice all gone.' And good grief, she's even venturing into three word utterances. I am fully agog. It really is such a miracle to see her developing language so swiftly. Bittersweet, because of Luke."
(In case you're concerned that I can't count, by the way, "all gone" counts as one word as the single unit descriptor that Emma was using. Linguistics!)
Now, it wasn't always bittersweet. Sometimes the thrill of finally having a child who talked, after years of waiting, was overwhelmingly wonderful. In that way, I know that Luke has made us more appreciative of things we might have otherwise taken for granted. But there was always that little wistful sigh, imagining how things could be different if Emma were emulating a chattering older brother.
We wondered if we should risk having another child. We hadn't known about the chance of autism with Emma. We certainly hadn't known with Luke. Was it foolish to bring another child to our family when there were no guarantees? Well, these questions aren't really exclusive to families with special needs children. Every parent takes that risk. There's always a chance of impairments, and always that implicit, "Of course I'll still love and care for my child, no matter what struggles they might have." But implicit ideas become a lot scarier when they turn into actual realities.
Still, we just couldn't shake the idea that our family wasn't complete. Every time we'd gather the kids, we felt like someone was missing. I'd heard people say that before and thought it sounded like just about the cheesiest thing ever. But it wasn't like a tender hollow in my heart or anything; it was just a practical, lingering sense of, "Oh, who did we forget? Bring 'em in here." And after all, worst case scenario, we were a lot more experienced about recognizing autism symptoms and getting services than we were with Luke - if it happened again, we'd know what to do. So, we made the choice.
March 2007: "Today I took a pregnancy test. It was positive. I don't think it's fully sunk in yet. We're having another baby!! I've wanted to for some time, but I wanted to be sure it was right. I confess I'm still not entirely sure. It will be stressful, emotionally and financially. Luke all by himself is a handful; now there will be three. But I just can't bear to give up the thought of more children. Luke needs siblings; Emma too."
The day that Ryan was born, my journal entry began "Today Luke played with Emma. Delightedly, giggling, making frequent eye contact. They were playing a kind of game of chase, and it was so amazing to watch them! From my hospital bed, holding Ryan.
"Yes, our baby was born! I wanted to write about our other children first, before I forgot, because it was such a wondrous thing for Luke to really play with his sister. Now I shall go on and relate Ryan's story."
It was a huge deal. Luke's teachers had mentioned that he was starting to respond well to other kids in his class when they chased him, but his interactions with Emma had been mostly indifferent. Now, suddenly, she had become a playmate. It made a very happy day even happier. Looking back, it seemed a sort of presage to what Ryan would do for our family. Emma could play with Luke well enough, but as Ryan grew he was able to connect with him far more. I don't know how much it comes from being a boy and how much it's a matter of individual personality, but Ryan speaks the physical language of motion far more fluently than Emma. She likes to read quietly in her room for hours; he scoffs at the thought of sitting still for that long. And that language is one that Luke speaks as well.
Ryan had a speech delay, which of course filled us with dread. But it became clear rather early on that his was not part of a pervasive developmental disorder. Unlike Luke, he was actually one of those boys, one of those younger siblings, who took his time learning to talk. He had once a week services until kindergarten, and then he graduated. Having his final IEP meeting was surreal. The teachers were a little bemused when we responded so delightedly to the notion that he no longer qualified for services. It was such a simple, un-worrisome moment in comparison to the heavy-duty meetings we'd had for Luke since before he was three. Again, Luke's situation had a ripple effect on that part of our family.
But back when Ryan was still a baby, we had another problem that couldn't be resolved without due consideration of Luke's services - our family had long since grown too big for our apartment. And if we wanted to keep Luke in his current program, we couldn't move to another more affordable town. We had lucked out with the first apartment, which had unusually low rent for the area. Nothing we looked at seemed remotely within our price range. We finally found something that we could just barely afford, thanks to Mark's somewhat more secure teaching job, but it still wasn't as much space as we had hoped for. We were also anxious that the move would happen right around the same time that Luke would be transitioning from the preschool program to the kindergarten through 2nd grade special ed classroom. He had made some real strides in preschool; we had even mostly potty-trained him, which I never would have thought possible for a non-verbal three- or four-year-old. And then, from April 2008: "He has acquired an exciting new skill at last after much work without apparent result: signing!...He's pretty consistent when prompted, even if his articulation isn't perfect. Occasionally he accompanies the sign with a sound, which gives me great hope of him talking. Oh, hooray! We just have to keep working on it and not let him regress."
The move and the change in classrooms didn't make him regress. I was amazed at how well he adjusted to change in most situations. He did have a few episodes of bolting in the new neighborhood, causing some of the most terrifying moments of my life when we couldn't find him, but keeping a close eye on him just became part of our routine. Like checking on him in the house when he's been too quiet for too long - usually means he's broken something or made an awful mess - or not having anything too expensive or fragile without easy reach, finding more and more ludicrously complicated ways of keeping forbidden things away from him because he could crack any supposedly child-proof lock in moments, and having to constantly change the hiding place of cookies or candy because he'll eat the entire bag and make himself sick if he's left to his own devices. In a lot of ways, it's like having an oversized toddler.
I couldn't begin to list all the ripples that Luke's autism has caused in our lives. But it becomes a lot easier when we just stop expecting the waters to ever be still.
We had intended to stay in Boston for two years for my husband's graduate program.
It'll be eleven years this August.
Once he finished, we assumed, we'd be able to cast a wide net for potential jobs. We weren't too picky about where we ended up settling. I preferred the East Coast, but if we found a great job in Minnesota, sure, we'd take that. Instead, by the time he graduated, Luke was already enrolled in preschool. A really good preschool. So we stayed. And I love the area; I'm quite happy to settle here. It just sort of happened by necessity rather than choice.
Theater teacher jobs aren't exactly abundant. Mark went ahead and got an English teacher certification as well, but he still wasn't able to find any full-time teaching jobs until the fall of 2007. During the 06-07 school year, he worked as a long-term sub for an English teacher on maternity leave, and when that ended a little over halfway through the year, we made do with regular substitute teaching. Of course I have no doubt we would have struggled with job searches no matter how widely we searched - no one goes into the field of teaching because it's an easy, lucrative business - but being limited to the immediate area was definitely an extra stress we hadn't anticipated.
Then there was the question of having autism as a hereditary trait in our family. They haven't pinned down exactly how much genetics come into play, but there's definitely some correlation. We found ourselves searching the family tree for possible undiagnosed cases, including ourselves. Were my quirks and social anxieties just a form of high-functioning autism? Mark taught himself to read extremely early, almost concurrent with learning to speak - maybe that was hyperlexia, a condition related to the spectrum. Maybe the very things we valued about ourselves - outside-the-box thinking, geekiness, whatever - were traits that had concentrated themselves into a son with severe limitations. Again, these are not the sort of thoughts you want to have circling through your mind.
With that, there was the looming question of what Luke's autism meant for our other children. We watched Emma's progress far more anxiously now, waiting for any of those warning signs that might tell us she was on the spectrum as well. Even with such scrutiny, however, nothing seemed to show up. We were deeply relieved, but even her exciting progress was bittersweet for us. That word showed up frequently in my journal entries about her. From November 2006: "And this week - Emma put two words together!! 'Juice all gone.' And good grief, she's even venturing into three word utterances. I am fully agog. It really is such a miracle to see her developing language so swiftly. Bittersweet, because of Luke."
(In case you're concerned that I can't count, by the way, "all gone" counts as one word as the single unit descriptor that Emma was using. Linguistics!)
Now, it wasn't always bittersweet. Sometimes the thrill of finally having a child who talked, after years of waiting, was overwhelmingly wonderful. In that way, I know that Luke has made us more appreciative of things we might have otherwise taken for granted. But there was always that little wistful sigh, imagining how things could be different if Emma were emulating a chattering older brother.
We wondered if we should risk having another child. We hadn't known about the chance of autism with Emma. We certainly hadn't known with Luke. Was it foolish to bring another child to our family when there were no guarantees? Well, these questions aren't really exclusive to families with special needs children. Every parent takes that risk. There's always a chance of impairments, and always that implicit, "Of course I'll still love and care for my child, no matter what struggles they might have." But implicit ideas become a lot scarier when they turn into actual realities.
Still, we just couldn't shake the idea that our family wasn't complete. Every time we'd gather the kids, we felt like someone was missing. I'd heard people say that before and thought it sounded like just about the cheesiest thing ever. But it wasn't like a tender hollow in my heart or anything; it was just a practical, lingering sense of, "Oh, who did we forget? Bring 'em in here." And after all, worst case scenario, we were a lot more experienced about recognizing autism symptoms and getting services than we were with Luke - if it happened again, we'd know what to do. So, we made the choice.
March 2007: "Today I took a pregnancy test. It was positive. I don't think it's fully sunk in yet. We're having another baby!! I've wanted to for some time, but I wanted to be sure it was right. I confess I'm still not entirely sure. It will be stressful, emotionally and financially. Luke all by himself is a handful; now there will be three. But I just can't bear to give up the thought of more children. Luke needs siblings; Emma too."
The day that Ryan was born, my journal entry began "Today Luke played with Emma. Delightedly, giggling, making frequent eye contact. They were playing a kind of game of chase, and it was so amazing to watch them! From my hospital bed, holding Ryan.
"Yes, our baby was born! I wanted to write about our other children first, before I forgot, because it was such a wondrous thing for Luke to really play with his sister. Now I shall go on and relate Ryan's story."
It was a huge deal. Luke's teachers had mentioned that he was starting to respond well to other kids in his class when they chased him, but his interactions with Emma had been mostly indifferent. Now, suddenly, she had become a playmate. It made a very happy day even happier. Looking back, it seemed a sort of presage to what Ryan would do for our family. Emma could play with Luke well enough, but as Ryan grew he was able to connect with him far more. I don't know how much it comes from being a boy and how much it's a matter of individual personality, but Ryan speaks the physical language of motion far more fluently than Emma. She likes to read quietly in her room for hours; he scoffs at the thought of sitting still for that long. And that language is one that Luke speaks as well.
Ryan had a speech delay, which of course filled us with dread. But it became clear rather early on that his was not part of a pervasive developmental disorder. Unlike Luke, he was actually one of those boys, one of those younger siblings, who took his time learning to talk. He had once a week services until kindergarten, and then he graduated. Having his final IEP meeting was surreal. The teachers were a little bemused when we responded so delightedly to the notion that he no longer qualified for services. It was such a simple, un-worrisome moment in comparison to the heavy-duty meetings we'd had for Luke since before he was three. Again, Luke's situation had a ripple effect on that part of our family.
But back when Ryan was still a baby, we had another problem that couldn't be resolved without due consideration of Luke's services - our family had long since grown too big for our apartment. And if we wanted to keep Luke in his current program, we couldn't move to another more affordable town. We had lucked out with the first apartment, which had unusually low rent for the area. Nothing we looked at seemed remotely within our price range. We finally found something that we could just barely afford, thanks to Mark's somewhat more secure teaching job, but it still wasn't as much space as we had hoped for. We were also anxious that the move would happen right around the same time that Luke would be transitioning from the preschool program to the kindergarten through 2nd grade special ed classroom. He had made some real strides in preschool; we had even mostly potty-trained him, which I never would have thought possible for a non-verbal three- or four-year-old. And then, from April 2008: "He has acquired an exciting new skill at last after much work without apparent result: signing!...He's pretty consistent when prompted, even if his articulation isn't perfect. Occasionally he accompanies the sign with a sound, which gives me great hope of him talking. Oh, hooray! We just have to keep working on it and not let him regress."
The move and the change in classrooms didn't make him regress. I was amazed at how well he adjusted to change in most situations. He did have a few episodes of bolting in the new neighborhood, causing some of the most terrifying moments of my life when we couldn't find him, but keeping a close eye on him just became part of our routine. Like checking on him in the house when he's been too quiet for too long - usually means he's broken something or made an awful mess - or not having anything too expensive or fragile without easy reach, finding more and more ludicrously complicated ways of keeping forbidden things away from him because he could crack any supposedly child-proof lock in moments, and having to constantly change the hiding place of cookies or candy because he'll eat the entire bag and make himself sick if he's left to his own devices. In a lot of ways, it's like having an oversized toddler.
I couldn't begin to list all the ripples that Luke's autism has caused in our lives. But it becomes a lot easier when we just stop expecting the waters to ever be still.
