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Harmony (Parkhurst)
3+/5. This book was really painful for me to read, because it was so emotionally accurate. It's about a family with a daughter Tilly on the autism spectrum, variant PDD-NOS, Asperger's-like. Tilly is, I think, in 7th grade? She is exceptionally intelligent and also has an exceptional amount of information about her chosen topics (statues). She also has severe meltdowns, often in public, some for which the cause isn't necessarily known. She appears to have some sensory processing issues. She has a lot of social difficulty, including sexually explicit speech and using extremely derogatory terms (e.g., bitch) to describe everyone around her. She is kicked out of several schools, the last being a special-ed school for children like her. At the time of the book, she is being homeschooled, but even that is fraught. Her parents uproot their family to be part of a camp for special-needs children like Tilly, led by a charismatic child-advice guru who might or might not be the answer to their hopes.
Most of the book is from the perspective of Iris (Tilly's younger neurotypical sister) and Alexandra (the mother). Iris loves her sister, even often likes her; is ashamed of her sometimes, struggles with the sacrifices her family has to make for her sister. Alexandra bears a crushing weight of… everything, of feeling like a failure for Tilly's failures, of anxiety about what her child will become and what her life is going to be like.
And it was like reading about a dark mirror of my own life. E isn't as extreme as Tilly, thank God. She thrives on rules and order and worksheets, she responds very well in a traditional schooling atmosphere, she only needs to be told once or twice that we don't talk about X in public or call people Y, and she might not understand why but she follows the rule. (In fact she is in a lot of ways easier than a neurotypical child because of this rule-following tendency. I never had to worry about her getting into things when she was a toddler; as a neurotypical toddler A is actually very good at obeying me, but he still gets into about thirty times more than she did.) She has increased sensory sensitivity (e.g., tags really bother her) but not what I would call sensory processing issues. She still has meltdowns but what sets her off is pretty predictable at this point, and most of them can be forestalled with a little bit of pre-preparation. (Except when she's sick. Still predictable, but harder to head off.)
But — but I remember two years ago. The daily meltdowns, the way I asked to be released from my church calling because of the clockwork church meltdowns, the parent-teacher conference where they said very nicely that she might not be able to stay at that school unless she had an aide stay with her full-time. That we paid for. The other school that we thought would be a perfect fit but that rejected her because of her emotional issues.
As she got better and her fine motor control improved (a BIG part of her issues have to do with frustration regarding her fine motor control) this turned out not to be an issue — she had an aide briefly in kindergarten but got along fine without one, and the other school has accepted her for the next year, but --
What would I have done? What would I have done if her problems had gotten worse instead of better? If she didn't have such a strong bent towards following rules? If schooling avenues had closed down for her? (E shares with Tilly that part of her issues are actually that she's substantially above grade level in some subjects, so although we could go to the public school system and get an IEP, there's a chance it wouldn't address those needs, which our local school system is not super good at anyway.)
And there's my friend whose ASD child is having similar social problems to Tilly; it's not my story to tell, and of course the problems aren't identical. But let's just say that I felt this just rang very true.
I have read some criticism of this book that it doesn't seem realistic that a set of parents would just uproot their lives like the family in Harmony does. And okay, in terms of practicality there is some merit to this. (There is basically zero page time given to the practical issues. Leaving one's job — what are they going to live off of at Camp Harmony, really? — buying the land, whose name is the land in, how is the contract set up — I'm actually reading right now about the early LDS church and their bid to live the "Law of Consecration" in which the idea was for everyone to give all they owned to the church. This worked out about as well as you'd expect. And part of the issue is that US courts frown really hard on that sort of thing. Anyway, especially given how ambivalent some of the parents are, I'd have expected a lot more thought expended by them on the practical and even legal side.) But in terms of the emotions, it gets it right. At some point you start grasping at straws. Someone tells you about a therapy and they swear up and down it's the right choice. You've seen they have some insight into your kid, maybe they're right, and what if it does help, what if you're throwing away a chance at helping your family because you're so skeptical?
Anyway. The only thing about it was that the descriptions were really stunning, the characterization and writing were great, but I felt like the ending was a little… abrupt, and it didn't quite deliver on the answers to all the hard emotional questions it was asking.
(edited 5-21-17 for wrong author, oops)
Most of the book is from the perspective of Iris (Tilly's younger neurotypical sister) and Alexandra (the mother). Iris loves her sister, even often likes her; is ashamed of her sometimes, struggles with the sacrifices her family has to make for her sister. Alexandra bears a crushing weight of… everything, of feeling like a failure for Tilly's failures, of anxiety about what her child will become and what her life is going to be like.
And it was like reading about a dark mirror of my own life. E isn't as extreme as Tilly, thank God. She thrives on rules and order and worksheets, she responds very well in a traditional schooling atmosphere, she only needs to be told once or twice that we don't talk about X in public or call people Y, and she might not understand why but she follows the rule. (In fact she is in a lot of ways easier than a neurotypical child because of this rule-following tendency. I never had to worry about her getting into things when she was a toddler; as a neurotypical toddler A is actually very good at obeying me, but he still gets into about thirty times more than she did.) She has increased sensory sensitivity (e.g., tags really bother her) but not what I would call sensory processing issues. She still has meltdowns but what sets her off is pretty predictable at this point, and most of them can be forestalled with a little bit of pre-preparation. (Except when she's sick. Still predictable, but harder to head off.)
But — but I remember two years ago. The daily meltdowns, the way I asked to be released from my church calling because of the clockwork church meltdowns, the parent-teacher conference where they said very nicely that she might not be able to stay at that school unless she had an aide stay with her full-time. That we paid for. The other school that we thought would be a perfect fit but that rejected her because of her emotional issues.
As she got better and her fine motor control improved (a BIG part of her issues have to do with frustration regarding her fine motor control) this turned out not to be an issue — she had an aide briefly in kindergarten but got along fine without one, and the other school has accepted her for the next year, but --
What would I have done? What would I have done if her problems had gotten worse instead of better? If she didn't have such a strong bent towards following rules? If schooling avenues had closed down for her? (E shares with Tilly that part of her issues are actually that she's substantially above grade level in some subjects, so although we could go to the public school system and get an IEP, there's a chance it wouldn't address those needs, which our local school system is not super good at anyway.)
And there's my friend whose ASD child is having similar social problems to Tilly; it's not my story to tell, and of course the problems aren't identical. But let's just say that I felt this just rang very true.
I have read some criticism of this book that it doesn't seem realistic that a set of parents would just uproot their lives like the family in Harmony does. And okay, in terms of practicality there is some merit to this. (There is basically zero page time given to the practical issues. Leaving one's job — what are they going to live off of at Camp Harmony, really? — buying the land, whose name is the land in, how is the contract set up — I'm actually reading right now about the early LDS church and their bid to live the "Law of Consecration" in which the idea was for everyone to give all they owned to the church. This worked out about as well as you'd expect. And part of the issue is that US courts frown really hard on that sort of thing. Anyway, especially given how ambivalent some of the parents are, I'd have expected a lot more thought expended by them on the practical and even legal side.) But in terms of the emotions, it gets it right. At some point you start grasping at straws. Someone tells you about a therapy and they swear up and down it's the right choice. You've seen they have some insight into your kid, maybe they're right, and what if it does help, what if you're throwing away a chance at helping your family because you're so skeptical?
Anyway. The only thing about it was that the descriptions were really stunning, the characterization and writing were great, but I felt like the ending was a little… abrupt, and it didn't quite deliver on the answers to all the hard emotional questions it was asking.
(edited 5-21-17 for wrong author, oops)
no subject
And I'm glad to hear that E's coping so well at the moment. I've told two people lately that Philomythulus is doing well, and after each time he had a massive meltdown the next day, so I won't risk saying that again but he is, it's so lovely, he's such a sweetheart right now, we're in that older boy sweet spot where small-child wildness is wearing off and teenage hormones haven't kicked in yet.
no subject
Oh, I'm so glad to hear that Philomythulus is doing well! <3 I totally get what you're saying, though, about jinxing it... speaking of which, E's actually in a bit of a relative rut right now, where she's melting down significantly more than she was a couple of months ago -- I think a lot of this (if not most) has to do with having to run off a lot to deal with toddler-related issues ("No, don't draw on the couch!" "You need another snack?") and not being able to devote the time or focus to do emotional prep with her when a situation comes up that I was able to before A got quite as active as he is now. But when I look at how she's doing now compared to how she was doing two years ago, even with the rut it's kind of amazing.