
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
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This blog is about Janey who is autistic and has an intellectual disability. This blog writes about the life of Janey in an honest way, one that shows both the difficulties and the joys of raising her.
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
4M ago
Janey slept very little last night. Instead, she spend the night waking up Tony and me over and over and over and over, each time asking, in the exact same tone of voice, "Want to take a shower?"
After all these years, we still have no idea how to best respond to repeated questions like this. You would think we'd have figured out a strategy that works. The fact we haven't makes me think there isn't one.
The rules about a shower are something we stay pretty consistent with. During the day, Janey can take a shower pretty much any time there is time. She sometimes takes 10 a d ..read more
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
4M ago
It's hard to believe, but it's true. My sweet Janey is now 20 years old. Her birthday was in August. Even though obviously I knew it was coming, it still seemed and seems impossible.
I admit, it's been a little bit tough in some ways to think of Janey as being 20. I guess it's hard for any
Janey on her 20th birthday
parent to ever believe they have an adult child, but of course with Janey it's a little different. She is in many ways still like a toddler, and she always will be.
A few weeks ago, I had the absolutely wo ..read more
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
7M ago
It's been a rough start to the summer with Janey. We are seeing behaviors we haven't seen for years---long days of screaming, lots of arm biting which comes close to breaking her skin, crying for hours. It's not every minute of every day, and there have been a few better days mixed in, but overall, it's certainly been a tough time.
We really have no idea what is causing this unhappiness. Some of it is probably just the change in routine that the end of the regular school year brings, but it hasn't been this extreme other years. Janey had quite a good y ..read more
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
11M ago
Seeing a total eclipse of the sun has been something I've wanted to do ever since I was aware such things existed. So last week's eclipse, which was total in parts of my home state of Maine, was a must-see for me. Luckily, we have dear family friends that also wanted to see the eclipse, and we all (fifteen people total, from their extended family and the five of us!) headed to Presque Isle, Maine for the big event.
In the weeks leading up to the trip, I was nervous about how Janey would do. She likes car travel, but lately, not long trips as much, and this trip was goin ..read more
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
11M ago
I've had this blog since Janey was three and first diagnosed. Now she is 19---hard to believe. That's a lot of World Autism Awareness Days under our belts. I was thinking today how my awareness wishes for the general public have changed since she became an adult.
First of all, there's just that---she's an adult. There seems to be thought out there that autism is something for children. I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic? They just somehow disappear?&n ..read more
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
1y 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
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
1y 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
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
1y 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
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
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
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
2y 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