Catching Up
Autism as it happens
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3M ago
 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up. One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we ..read more
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Summer update
Autism as it happens
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8M ago
In no particular order, some updates from our summer so far! The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a ..read more
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Oxygen masks are hard to put on
Autism as it happens
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9M ago
 We've all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child's one.  It's part of a series we get told as autism parents, and I don't think I'm the only one that can get annoyed by them.  The reminders feel like they are saying "You are responsible for your own burnout, your own tiredness.  You need to take time to put yourself first.  That's on you"  And I don't even need to explain to those of you who are living this life the flaw there---how impossible it can be to get even a minute to take care of ..read more
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The tasks of adulthood and a big surprise possibility
Autism as it happens
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1y ago
The last few months have felt both uneventful and hectic. The uneventful part is good. Janey has had a very good stretch of happy and easy behavior. She's loving school, enjoying home for the most part and generally being quite a delight. The hectic part---us trying to do what needs to be done for an adult with severe disabilities. We are working on getting legal guardianship for Janey and getting her Social Security income---both things that need to be done when or soon after an adult like Janey in the US turns 18. Applying for Social Security was surprisingly easy, but that's all that's happ ..read more
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The Scariest Hour
Autism as it happens
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1y ago
 Well, once again, it's been a while!  I think often about writing a post here, but it seems often thinking is as far as it gets.  But an experience a few months ago has been on my mind constantly, and I guess I'm ready to write about it. In early October, COVID finally hit our family.  I was starting to wonder if we were one of the rare families with some kind of immunity, as Janey had been going to school unmasked and Freddy to work unmasked for a long time at that point, and both of them had been exposed without getting it several times.  But, it turns out, we aren ..read more
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A system that only rewards those able to be demanding
Autism as it happens
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1y ago
 I recently read a report a consulting firm wrote about an investigation they had done into a now closed school that had been part of the Boston Public School system.  None of my kids went to the school, but I read the report with interest as it was addressing larger problems within the district.  In the report, I came across this passage...  "Finally, we found that BPS’s current practice of more urgently addressing SPED issues or “crises” when they are raised by vocal parents results in an inequitable system within BPS where certain families are at a disadvantage because t ..read more
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The Cycling Life
Autism as it happens
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1y ago
 Janey turned 18 last month.  I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood.  I found myself unable to do that. It hit me today what made it so hard for me to write about the milestone in Janey's life.  It's the lack of forward motion in her life, and ours.  Janey changes, all the time, but the changes are cycles, for the most part.  There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have b ..read more
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Hot and bothered
Autism as it happens
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1y ago
 The last three weeks have been the hottest ever recorded in Boston, and it's been miserable.  Hot weather is miserable everywhere (or it is to me) but Boston's hot weather feels like a special kind of awful---humid air but no rain and a feeling of there not being a full breath to take outside.  I hate it.  And so, take that into consideration when I rant here. Janey had a tough day of school today.  We got a call from her summer school teacher.  He seems great, and I really liked the way he told me about her day---emphasizing the good, outlining all she was sayin ..read more
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As Janey nears adulthood
Autism as it happens
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1y ago
 I've had a very hard time getting myself to write a blog entry lately.  I think this is because next month, Janey will be 18.  She will be an adult.  It's hard to believe, as is the case with any child turning into an adult.  But in Janey's case, it's more bittersweet than it is with most children.   I keep feeling like I need to somehow sum up Janey's childhood, to tie it up in writing.  And of course I can't.  And of course also, her 18th birthday is just a number.  To her, it won't make a difference.  She doesn't understand what it mea ..read more
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The Things Janey Cannot Change---a plea for serenity
Autism as it happens
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2y ago
 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.   I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to ..read more
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