Myths of Normalcy
Apr. 21st, 2015 06:16 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
matrilIt's the fourth and final full week of April, so this will be my concluding post in this life-with-Luke series. I don't know that I can really tie everything up in a pretty bow. The story is ongoing, no tidy conclusion. Mostly, I've found that as soon as I think everything is settled, a new complication arises - but that's not always a bad thing. For better or worse, Change is the only constant.
We spent four years in our first Massachusetts apartment, and four years in the second one. We loved the neighborhood of our second place - a quiet cul-de-sac with lots of other kids and plenty of shared yard-space, even though our actual yard was minimal. We weren't as big fans of the dangling light fixture in our dining area, which Luke always wanted to push into a big swinging arc. Then one summer morning, before we'd even gotten out of bed, we heard Luke messing around down there, ending with a heart-stopping crash. He'd knocked the light off its cord, and at some point before snapping off, it had sliced open his forehead. He got seven stitches.
That was just the beginning. From August 2010: "Last week Luke pushed the screen out of one of [the kids'] bedroom windows. Bad enough, but after we put him to bed that night, he climbed up in the window. Whether he actually intended to get out that way,I have no idea. But Mark found him and pulled him back before anything else could happen. So we spent that week trying to find a way to seal the window shut in a way that Luke couldn't get past it, in the meantime watching him continually until he fell asleep, and sleeping very uneasily ourselves. The problems didn't end there, though. Since we always write about things like this in Luke's communication book for school, someone in the summer program who obviously doesn't know the situation very well came to believe that we were overwhelmed and possibly neglecting Luke. So we got a call from DCF or whatever they're called.
"Aiee! For over a week we were in a state of agonized panic. We knew we take care of our kids; we know we have a great support system, but what if that just didn't come across and they took drastic measures?...Even though they said they were looking to help us, they did use the word 'neglect' and arranged for someone to come and visit.
"So we spent the days before Wednesday, the visit day, in a whirlwind of cleaning and organizing. We got a lock installed on that window; we put all dangerous/potentially dangerous things well out of reach; we labored until there was - we hoped - nothing that they could find an issue with. But we had no idea how close they'd scrutinize our home. And what if Luke had one of his meltdowns in the middle of the visit? I could imagine so many horrific scenarios. Darn imagination.
"Well, the visit was fine. The social worker was already predisposed to think well of us; she could see we were dedicated parents and had great supports. She basically just sat and talked with us - she didn't even look at most of the house!...Mostly she was apologetic for the trouble and wished she had a list of more resources for us. She said she planned on filing a 'little to no concern' report.
"So our house is clean, anyway...But what a week...what a month...what a summer."
Honestly, during that nightmarish week I had plenty of moments wondering if I really was a neglectful parent - or incompetent - or just generally unsuited to be Luke's mother. It was one of the longest weeks of my life. It still makes me shudder.
When his regular teachers came back for the school year, things looked better. And especially when the school social worker got back from vacation - she was furious that anyone had insinuated such things about our parentings. She was one of the best resources we ever had. She fought to get Luke home visit services; she found the funds to pay for Ryan to go to preschool; she would even sometimes give me rides when I needed to get to the school. I wish we could have just taken her with us when we moved towns.
But we've found great people everywhere we've gone. The next summer the social worker suggested we try putting Luke in a collaborative school for the extended year program, just to see how he fit there. And if we liked it well enough to keep them there for the regular school year, we wouldn't have to stay in the same single town anymore. The collaborative program included plenty of towns, including more affordable ones.
Yet I was reluctant to try it. It was something of a symbolic problem, I think. I'd always hung onto to the vague hope that with just a few more years of intensive help, Luke would be able to transition to a mainstream classroom. Sending him to a separate, specialized school felt like I was giving up on that. And I had wanted to have all my kids in the same school, even if it was just for the year that Luke would be in fifth grade, Emma in third, and Ryan in kindergarten. (Ryan's December birthday put him three grades behind Emma instead of two) But I recognized that these were my own issues, not valid concerns, so we agreed to try it out.
Luke loved it there, from the very beginning. The staff was great, the teachers were great, and the summer program included weekly trips to the pool and excursions out into the community. I was astonished to realize that at this school, he could actually participate more rather than less in the mainstream, as long as I adjusted my definition of "mainstream." He'd never been able to go along on field trips at the regular school. He couldn't eat lunch in the cafeteria with so many noisy kids and overstimulating sensations. At this school, however, the student body was much smaller and each with their own share of quirks, so they could be much more inclusive. It didn't take long for us to decide to keep Luke there.
Which meant we could significantly widen our search for a new place to live. We knew we needed to expand to three bedrooms; Emma would really need her own room before long. After long months of searching, we found a place one town over. And what a difference it made just to cross the border. Three bedrooms, two bathrooms, an entire attic for storage, yet cheaper rent than our current two bedroom? We have no doubt that the find was providential. Our jaws just about dropped to the ground when our prospective landlady offered, without anyone asking, to lower the rent by a hundred dollars to make it more affordable.
In our previous places, when we'd been there two or three years I would start to feel that itch to move someplace bigger and better. We're at nearly three years in this place, and I haven't had that feeling at all. We wish we had a back yard (there's just a parking lot back there) but we have a park in easy walking distance, so we can deal with it all right. Otherwise, we have no reason to move unless we actually someday can achieve that elusive dream of home ownership. Which we aspire to mainly so we can be done with those apologetic calls to landladies after Luke has broken yet another part of the house.
2012 was a big year for a lot of reasons. In February my parents treated us (but mostly the grandkids) to a trip to Disney World. We were anxious about Luke, making him a T-shirt to wear with our cell phone number written on it (also, we finally got a cell phone), keeping a tight grip on him, worrying that he'd have meltdowns when he had to wait in line. But there were no real problems, and he had a wonderful time as we all did. Then there was the madcap two weeks of wedding stuff, when my little sister got married in Utah at the end of April and my little brother got married in Ohio at the beginning of May.
We flew to Utah and, since it was our spring vacation, we spent a lovely week there visiting family and friends. Luke continued to do well even with all the changing places and situations, though he did escape the hotel room once without our knowing and we spent fifteen heart-pounding moments looking for him before Mark discovered him on a stair landing. Our weekend in Ohio was more stress-filled, as we drove there and thus spent most of the time traveling. But Luke didn't give us any trouble. I fear that much of the stress came from me instead. From May 13, "We drove to Ohio last weekend...and it was a wonderful, happy, occasion. But the stress of travel had me so tense and snappy I could barely stand to be around myself. I want so much to be a good, upbeat person, and I am failing so miserably. I want to be happy with who I am and what I do, and I don't know how."
This is one hard thing I've learned. Difficult situations do not automatically make you into a better person. They can, if you choose to allow them to shape you that way. But if you don't, they just bring out all the cracks in your character.
The first few weeks in our new home had quite a few potentially-character-building-but-also-potentially-character-cracking moments. Getting all the kids' paperwork transferred seemed a never-ending task, with some new problem cropping up every time I thought it had finally all been taken care of. It required many phone calls, and the kind of assertiveness that pulls me miles out of my comfort zone. I'm quite grateful that most of Luke's services, and all of my children's schooling, have required very little of the proactive parenting that all the news articles are always extolling. "So-and-so's mother would go to any lengths to get her child what they needed. She knocked down every door, wouldn't take no for an answer, crashed faculty meetings, held the school board hostage, sent Congressmen threatening letters..."
Yeah, no. I'd just like to ask politely. Thank goodness that's usually enough.
Emma and Ryan continued to thrive for the most part. Ryan got his speech services while waiting to start kindergarten the next year, as well as reading lessons from me, and Emma's reading, writing, math and general thirst for knowledge continued to astound us. Straight A's on most report cards. Same for Ryan once he started school. It was such a surreal contrast with their older brother. We would watch old home movies and marvel at how much Emma and Ryan had grown, how much more articulate and mature they had become. And then there was Luke, smaller but engaged in the same familiar activities; spinning and humming, as non-verbal and in his own world as ever. Changes come, yes, but in smaller and subtler ways. If you don't know where to look, it can seem like he's just standing still.
His verbalizations increased significantly last year. That is, he used to maybe say "Bye" or "Hi" with prompting, with the occasional "T" for tickle or "Pah" for popcorn. Now he has probably ten or more sounds that correspond to something. An approximation of "cheese" both for requesting the food and for smiling for a camera. "P-p-p" for Ipad, where he has a communication app (though he mostly likes to play with it; we do use it to include him in family scripture study). "P-sh" for push on the swing. There are others, and we always try to teach him more. We don't know how much farther it will go. We don't know if there's some other form of communication that he'll thrive with; another electronic device or a computer keyboard or whatever that hasn't been invented yet.
We are almost 100% sure that he won't be able to gain full independence. It's not easy to think about the future. He'll need assistance. He won't be able to go off to college. He might never be able to have a job. Decades from now, when we're too old, who will take care of him? I'm scared of the questions and I'm scared of the answers. I know that no parent ever stops worrying their children, however grown-up and independent they may be. We're just getting the really intense, non-stop version of that.
When the questions get too overwhelming, I just focus on the moment. Where we are now. And on the fact that however much trouble I might have understanding my son, he is as fully complex and thoughtful as any other human, somewhere deep inside that I can't usually see. I try to get glimpses. I try to learn some of his language, though it's fundamentally foreign to me. I try not to qualify my feelings - "I love my son because..." No, I just love my son. There doesn't have to be a reason. There shouldn't be a reason. That way, no matter what, I'll always love him.
We spent four years in our first Massachusetts apartment, and four years in the second one. We loved the neighborhood of our second place - a quiet cul-de-sac with lots of other kids and plenty of shared yard-space, even though our actual yard was minimal. We weren't as big fans of the dangling light fixture in our dining area, which Luke always wanted to push into a big swinging arc. Then one summer morning, before we'd even gotten out of bed, we heard Luke messing around down there, ending with a heart-stopping crash. He'd knocked the light off its cord, and at some point before snapping off, it had sliced open his forehead. He got seven stitches.
That was just the beginning. From August 2010: "Last week Luke pushed the screen out of one of [the kids'] bedroom windows. Bad enough, but after we put him to bed that night, he climbed up in the window. Whether he actually intended to get out that way,I have no idea. But Mark found him and pulled him back before anything else could happen. So we spent that week trying to find a way to seal the window shut in a way that Luke couldn't get past it, in the meantime watching him continually until he fell asleep, and sleeping very uneasily ourselves. The problems didn't end there, though. Since we always write about things like this in Luke's communication book for school, someone in the summer program who obviously doesn't know the situation very well came to believe that we were overwhelmed and possibly neglecting Luke. So we got a call from DCF or whatever they're called.
"Aiee! For over a week we were in a state of agonized panic. We knew we take care of our kids; we know we have a great support system, but what if that just didn't come across and they took drastic measures?...Even though they said they were looking to help us, they did use the word 'neglect' and arranged for someone to come and visit.
"So we spent the days before Wednesday, the visit day, in a whirlwind of cleaning and organizing. We got a lock installed on that window; we put all dangerous/potentially dangerous things well out of reach; we labored until there was - we hoped - nothing that they could find an issue with. But we had no idea how close they'd scrutinize our home. And what if Luke had one of his meltdowns in the middle of the visit? I could imagine so many horrific scenarios. Darn imagination.
"Well, the visit was fine. The social worker was already predisposed to think well of us; she could see we were dedicated parents and had great supports. She basically just sat and talked with us - she didn't even look at most of the house!...Mostly she was apologetic for the trouble and wished she had a list of more resources for us. She said she planned on filing a 'little to no concern' report.
"So our house is clean, anyway...But what a week...what a month...what a summer."
Honestly, during that nightmarish week I had plenty of moments wondering if I really was a neglectful parent - or incompetent - or just generally unsuited to be Luke's mother. It was one of the longest weeks of my life. It still makes me shudder.
When his regular teachers came back for the school year, things looked better. And especially when the school social worker got back from vacation - she was furious that anyone had insinuated such things about our parentings. She was one of the best resources we ever had. She fought to get Luke home visit services; she found the funds to pay for Ryan to go to preschool; she would even sometimes give me rides when I needed to get to the school. I wish we could have just taken her with us when we moved towns.
But we've found great people everywhere we've gone. The next summer the social worker suggested we try putting Luke in a collaborative school for the extended year program, just to see how he fit there. And if we liked it well enough to keep them there for the regular school year, we wouldn't have to stay in the same single town anymore. The collaborative program included plenty of towns, including more affordable ones.
Yet I was reluctant to try it. It was something of a symbolic problem, I think. I'd always hung onto to the vague hope that with just a few more years of intensive help, Luke would be able to transition to a mainstream classroom. Sending him to a separate, specialized school felt like I was giving up on that. And I had wanted to have all my kids in the same school, even if it was just for the year that Luke would be in fifth grade, Emma in third, and Ryan in kindergarten. (Ryan's December birthday put him three grades behind Emma instead of two) But I recognized that these were my own issues, not valid concerns, so we agreed to try it out.
Luke loved it there, from the very beginning. The staff was great, the teachers were great, and the summer program included weekly trips to the pool and excursions out into the community. I was astonished to realize that at this school, he could actually participate more rather than less in the mainstream, as long as I adjusted my definition of "mainstream." He'd never been able to go along on field trips at the regular school. He couldn't eat lunch in the cafeteria with so many noisy kids and overstimulating sensations. At this school, however, the student body was much smaller and each with their own share of quirks, so they could be much more inclusive. It didn't take long for us to decide to keep Luke there.
Which meant we could significantly widen our search for a new place to live. We knew we needed to expand to three bedrooms; Emma would really need her own room before long. After long months of searching, we found a place one town over. And what a difference it made just to cross the border. Three bedrooms, two bathrooms, an entire attic for storage, yet cheaper rent than our current two bedroom? We have no doubt that the find was providential. Our jaws just about dropped to the ground when our prospective landlady offered, without anyone asking, to lower the rent by a hundred dollars to make it more affordable.
In our previous places, when we'd been there two or three years I would start to feel that itch to move someplace bigger and better. We're at nearly three years in this place, and I haven't had that feeling at all. We wish we had a back yard (there's just a parking lot back there) but we have a park in easy walking distance, so we can deal with it all right. Otherwise, we have no reason to move unless we actually someday can achieve that elusive dream of home ownership. Which we aspire to mainly so we can be done with those apologetic calls to landladies after Luke has broken yet another part of the house.
2012 was a big year for a lot of reasons. In February my parents treated us (but mostly the grandkids) to a trip to Disney World. We were anxious about Luke, making him a T-shirt to wear with our cell phone number written on it (also, we finally got a cell phone), keeping a tight grip on him, worrying that he'd have meltdowns when he had to wait in line. But there were no real problems, and he had a wonderful time as we all did. Then there was the madcap two weeks of wedding stuff, when my little sister got married in Utah at the end of April and my little brother got married in Ohio at the beginning of May.
We flew to Utah and, since it was our spring vacation, we spent a lovely week there visiting family and friends. Luke continued to do well even with all the changing places and situations, though he did escape the hotel room once without our knowing and we spent fifteen heart-pounding moments looking for him before Mark discovered him on a stair landing. Our weekend in Ohio was more stress-filled, as we drove there and thus spent most of the time traveling. But Luke didn't give us any trouble. I fear that much of the stress came from me instead. From May 13, "We drove to Ohio last weekend...and it was a wonderful, happy, occasion. But the stress of travel had me so tense and snappy I could barely stand to be around myself. I want so much to be a good, upbeat person, and I am failing so miserably. I want to be happy with who I am and what I do, and I don't know how."
This is one hard thing I've learned. Difficult situations do not automatically make you into a better person. They can, if you choose to allow them to shape you that way. But if you don't, they just bring out all the cracks in your character.
The first few weeks in our new home had quite a few potentially-character-building-but-also-potentially-character-cracking moments. Getting all the kids' paperwork transferred seemed a never-ending task, with some new problem cropping up every time I thought it had finally all been taken care of. It required many phone calls, and the kind of assertiveness that pulls me miles out of my comfort zone. I'm quite grateful that most of Luke's services, and all of my children's schooling, have required very little of the proactive parenting that all the news articles are always extolling. "So-and-so's mother would go to any lengths to get her child what they needed. She knocked down every door, wouldn't take no for an answer, crashed faculty meetings, held the school board hostage, sent Congressmen threatening letters..."
Yeah, no. I'd just like to ask politely. Thank goodness that's usually enough.
Emma and Ryan continued to thrive for the most part. Ryan got his speech services while waiting to start kindergarten the next year, as well as reading lessons from me, and Emma's reading, writing, math and general thirst for knowledge continued to astound us. Straight A's on most report cards. Same for Ryan once he started school. It was such a surreal contrast with their older brother. We would watch old home movies and marvel at how much Emma and Ryan had grown, how much more articulate and mature they had become. And then there was Luke, smaller but engaged in the same familiar activities; spinning and humming, as non-verbal and in his own world as ever. Changes come, yes, but in smaller and subtler ways. If you don't know where to look, it can seem like he's just standing still.
His verbalizations increased significantly last year. That is, he used to maybe say "Bye" or "Hi" with prompting, with the occasional "T" for tickle or "Pah" for popcorn. Now he has probably ten or more sounds that correspond to something. An approximation of "cheese" both for requesting the food and for smiling for a camera. "P-p-p" for Ipad, where he has a communication app (though he mostly likes to play with it; we do use it to include him in family scripture study). "P-sh" for push on the swing. There are others, and we always try to teach him more. We don't know how much farther it will go. We don't know if there's some other form of communication that he'll thrive with; another electronic device or a computer keyboard or whatever that hasn't been invented yet.
We are almost 100% sure that he won't be able to gain full independence. It's not easy to think about the future. He'll need assistance. He won't be able to go off to college. He might never be able to have a job. Decades from now, when we're too old, who will take care of him? I'm scared of the questions and I'm scared of the answers. I know that no parent ever stops worrying their children, however grown-up and independent they may be. We're just getting the really intense, non-stop version of that.
When the questions get too overwhelming, I just focus on the moment. Where we are now. And on the fact that however much trouble I might have understanding my son, he is as fully complex and thoughtful as any other human, somewhere deep inside that I can't usually see. I try to get glimpses. I try to learn some of his language, though it's fundamentally foreign to me. I try not to qualify my feelings - "I love my son because..." No, I just love my son. There doesn't have to be a reason. There shouldn't be a reason. That way, no matter what, I'll always love him.
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no subject
Date: 2015-04-22 07:27 am (UTC)Have Luke's teachers told you what they're thinking of for after high school? I mean, are they doing vocational training until twenty-one or anything like that? It's fantastic that he gets to go on field trips and interact with the world more -- independence might not be possible but that can still make a huge difference in how comfortable he is day-to-day.
no subject
Date: 2015-04-22 03:23 pm (UTC)They do teach him a lot of daily living skills right now - toothbrushing, deodorant (thankfully, he hasn't yet acquired that constant reek of puberty, but we'll be ready when he does), even basic cooking skills. Every student has different levels of competence even when they're the same age, but they do their best to accommodate individual abilities.
no subject
Date: 2015-04-23 04:58 am (UTC)no subject
Date: 2015-04-23 07:54 pm (UTC)