Sending all the good vibes we can spare, dude.
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Oh man, I didn’t see that coming, though I guessed when I started reading I was in for a wild ride. And, 63 that’s no age. I’m 68 and shit, and life is the thing you never have enough of.
Grief and grieving is a process, and don’t be surprised or unduly concerned if it hits you hard (I mean be concerned about the grief, but not the fact that you’re grieving), and all I can say is that time (6 months or so) will see some changes.
It won’t ever totally go away, grief is funny like that (not the funny ha, ha kind of funny, but the peculiar kind of funny).
Take care. Be kind to yourself.
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Yeah, it’s quite the roller coaster, innit?
Thanks for your kind words. We’ll take them to heart.
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Well, it is not a very deep thing, but I just got my 4th badge for my Anniversary around these forums. Thanks everybody for making it such a good place, and thanks Roger for hosting us
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Yes, thank you all. This is a wonderful community and I feel blessed I can be a part of it.
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One of my cats is very sick.
She’s been quite sick for a few years now. Diabetic (twice daily insulin shots), arthritis, irritable bowels… she had surgery back in December for a growth on her face that was bleeding after having surgery for a growth on her spine the previous summer.
It’s a near miracle she’s lived this long. She’s on Life 11 at this point.
But her face has now swollen up. The growth they removed from her face was cancerous, and I suspect that this is probably it (although I thought that in December too). Who knows, maybe in the next day or two the swelling will go down and she’ll keep being the tiny, delicate, sweet princess she’s been for the last 14 years of my life.
But I don’t think so. Extra snuggles for her every chance I can (although not so much that I annoy her).
EDIT:
Just so that it’s not all doom and gloom, this was my 16+ year old bike:
For my birthday a few weeks back, I bought a new bike! Rode it to work for the first time today. A very nice ride, definitely an upgrade.
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So my dad got to go home from the hospital yesterday. That’s good!
Today, however, he was diagnosed with chronic systolic heart failure. That’s bad.
But the diagnosis comes with a free frogurt! That’s good!
The frogurt is also cursed…
That’s bad.
So basically this means he will likely need to be hospitalized every 4-6 months. Looking into it, about half of people with this live 5 years after diagnosis, and 35% live 10 years. With all his health issues, though, I fear he may end up being in the other half of people. But for now he is home and doing okay.
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Cat update?
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My partner took her to the vet today.
Her entire left side of her face was swollen like a balloon. I thought it was the cancer, turns out just a very, very aggressive secondary infection.
So now three times a day we have to put a warm compress on her face to help circulation, plus drain fluid from the area with a needle, plus she’s on two more antibiotics (bringing her to three, plus her twice daily insulin shots and her arthritis meds).
She’s still with us. Still purring and eating like a champ.
We know our time with her is measured in days and weeks rather than years, probably, but for now she’s still the sweetest, softest, most spoiled princess. And that’s enough.
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More adventures in parenting autistic children!
So first, a little background. We have been displaced from our home while some renovations are being done to make it safer for the kids to be there. Installing solid core doors for the rooms, recessed lighting in the ceiling, fiberglass reinforced paneling on the walls, and new laminate on the floors. We are currently in a group home that was empty due to lack of staffing. Sad thing is it’s a nicer house than ours, with an extra bedroom and bathroom and larger living room and kitchen. However, it is missing some amenities like entry closet, furnishings, and the big back yard we have.
It’s also set up in a way that the front and back doors are permanently locked on the outside, so you need a key to get in, but you can just walk out from inside by just turing the handle. There’s no lock or deadbolt to even slow someone down.
You may guess where this is going.
Woke up around 3 this morning to find police at our front door. Our open front door. They asked if we had an autistic child and at our affirmative showed us a picture of our younger child. They said they had him and that he was okay. He had been found a few blocks away in a car. Apparently the owner had called police when they saw someone in their car, but when they realized it was a child they took out a blanket for him and stayed with him until police arrived. It was cold last night and he was barefoot. Thankfully they had an autistic child of their own so recognized the signs and were patient with him.
We had to go to the nearby hospital to get him, as he had been taken there to be checked out. His appearance was a close match for another child in a system for the county that they use to identify children like ours, but I guess when they reached out to that family they realized it wasn’t him. So they just drove around the neighborhood and noticed our front door was open. Thank whatever higher power you want that he didn’t close it behind him!
So got him and left the hospital around 4 AM. Today I’m buying a deadbolt and installing it backwards in the front door. Sure, someone outside can undo it, but it will require keys to open it from the inside so we will be able to sleep for the rest of the month with some peace of mind.
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My cousin was visiting recently with his 2 kids. The 2 year old apparently tries to escape whatever house she is in. One time we caught her just as she was about to run out on the street. Just residential but… It was just 2 days and we locked the door from the inside after that but that felt bad enough. And that’s magnitudes from waking up to find the police at the front-door -.-
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A lot of feelings of sympathy but what I want to say is, can you tattoo your phone number on their wrists? Sounds crazy. Just I don’t know what I’d do as a parent. Anything to make sure they can find their way back to me.
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Don’t think I’d do something quite that permanent to them 
Our older kid at least knows our phone numbers and home address, so can give them when asked. At least, if he chooses to. Sometimes he’s just not very cooperative, but he can at least communicate. Our younger son can’t. We just need to sign up with the service the police mentioned, that way they will be in a database linking them to us if they are picked up in the future.
We also have these AngelSense devices for the kids which provide GPS tracking and can even have a microphone turned on so we could hear them and what’s happening around them. Problem is we don’t trust the kids to actually wear them, and it’s not like our 10 year old is going to grab it before trying to explore the neighborhood at 2 in the morning, or whenever he got out.
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Could some kind of bracelet with phone numbers on work?
I’m thinking like the ones you get given at festivals, not like jewellery, so they’d be harder to remove.
Must be very worrying. Kids who don’t run off any chance they get are worrying enough!!
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Today I learned that there are still people who leave their cars unlocked! Either that or your 10-year-old is a lock-picking mastermind.
I’m glad he picked the car of someone friendly and understanding
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It seems to be a very personal choice. We have some nannies and grandparents who lock the car in the garage, which drive me crazy (go out to grab that lost shoe, have to go back in for the keys…)
Definitely others, like people who grew up in Iowa, who don’t know what locks are for and why anyone would bother with them. Street, driveway, garage, whatever.
There’s been some thieving rackets around here where people just go down the street and try door handles. No need to break in if 1-in-20 offers free entry? A place like DC you get Iowans and New Yorkers living next door to each other and one of them probably has their wallet in the car for convenience.
Go far enough north and people leave their cars running while in the grocery store, because the car won’t re-start otherwise. If you want a free car, try Yellowknife in the winter…
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If it had been my older kid, I would have assumed he was planning to try to drive to the Toys ‘R’ Us in Canada. Not that he knows how to drive. Or exactly how far the Toys ‘R’ Us is from us. Or where Canada lies in relation to us, for that matter.
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Today, I had to give my cat a bath using the shower in our campervan… 0/10, would not recommend. 
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Went to a cafe called MYSTIC BUREK in Sydenham, and had a filo pastry pie with creamed spinach, potatoes, parmesan and kurdish chilli. Was good.
Then went to the Horniman museum which I haven’t been to before. They’ve got a butterfly house!
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Crap. This is the sort of thread where, if you don’t keep posting, so much builds up that suddenly it’s too much to post. I’m finding I’m somewhat unable to be “brief” these days but I’ll try.
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Lost my job in January. I had planned a switch this summer, after the youngest turned 1, but a re-org in Jan offered me a chance to depart with severance. The timing seemed good, so I took it. I’m not sure the timing was good. It has been really, really hard to look for a job on low sleep and chaotic schedule. I took the rest of January off. Tried to look in Feburary. By March I had made so little progress that I fell into despair and had a real personal/existential crisis.
I think the real job search started in April. I’m making progress now. Still feels like a long time.
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We’ve been working with Au Pairs as we really need in-home help. The annual hello-goodbye-search-train cycle was wearing on us, especially the kids. So we sprung for a real nanny, hoping to keep her for a few years. Maybe triple the salary of an au pair, an agency fee that would get us a nice new deck in the back yard… she was great. After a year, though, she decided she didn’t want to be a nanny anymore. So she’s gone. Basically just a good au pair.
With me unemployed, I’m now the nanny. That doesn’t jibe well with the job search.
We have found, and made an offer to, another nanny. Another backyard deck sacrificed to the nanny agency. We’ve made it clear, as we did before, that we need a long term commitment. We’ll see - you can write it into a contract but you can’t chain an employee to their desk.
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My daughter decided she didn’t want to walk. Probably a combination of the work just being too hard, and sheltering herself against any hope, which hurts when dispair enters in. We rolled with that for a bit.
In February or so she decided she wants to walk, again. Not sure what flipped the switch. She’s been making some real strides in strength and posture. We’re always trying to diversify and switch-up her therapies. Her PT, since she was 9 months old, retired. That was hard. I think she’s really gosh darn close.
Everything is a tough balancing act. The need to keep her moving, to protect her physiology and ensure she has a foundation for whatever she wants to do in the future. The need for her to just be a kid and play as she is able. The desire for her life to be easier, and knowing independent mobility would make things easier for all of us. The truth that she is enough as she is and she really doesn’t need to walk. If she never does, that’s ok too. God, I’m tired.
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They’ve told us since first diagnosis that she is on seizure watch. She started having seizures.
They are mild, just spacing out followed by fatigue and disorientation. We really really want to keep her off medication. Past pharmaceutical interventions have cost as much as they’ve gained. But depending on where things go from here, you may have to make the trade-off at some point.
Technically, she’s had four. I think of it as one. The first one came, and then another about five days later. I think they are related to the same episode of elevated brain activity. The third came during her EEG where they subjected her to strobe lights (it was awful). The fourth again came a few days after the EEG, probably an aftershock before her brain fully quieted. So each pair seems like a single event, and the second pair was induced.
Still, gosh. One more thing.
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We’ve had a lot of trouble sleep training this last baby. I won’t get into the why, it’s not one thing. It’s dozens of elements of crossfire that just seem to hit at all the wrong times, accompanied by three failed attempts (one was our fault, one she pooped five minutes into the training, and the third just didn’t take after 40 minutes). So put down is still a long event. However, she’s (mostly) slept through the night for about 5 nights. It feels amazing to spend a day after a night of sleep!
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I really think she’ll walk in the next year. If she doesn’t that’s ok. But I think she will.
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I may be going on passive mode for a bit. As mentioned, I’m a full time nanny for about three weeks (which doesn’t involve working at the computer). We’re going to Boston for a few weeks for summer therapy. I don’t know what the next few months hold.
I hope to keep reading, as I’d rather read than scroll. But expect a Topic of the Week hiatus (anyone is free to take over for a bit, if the spirit moves you) and limiting myself to simpler or very familiar games on BGA for a bit.
Spring was bad. I think summer will be ok. Just not a time to be at the computer.
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