No, Janey's not awake. It's just me awake. I've been having a lot of trouble sleeping the past few nights. Thoughts and worries swirl around in my mind and keep me up.
Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day. Today, the death number was 252----the highest yet. Somehow, that really hit me. I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day? It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts. It feels in this case like a terror happening off camera. We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number. It's terrifying.
And of course, I fear most of all that it will hit us. How could either Tony or I do the job of being Janey's parent without the other? Or what if Janey got sick? Or the boys?
We don't go anyplace. Not at all. Tony takes Janey for a car ride to no-where a few times a day. We play with her in the driveway. She hasn't set foot outside our house, driveway or car for over a month. She would not wear a mask. She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst. She touches everything---when I take her for a walk, she runs her hands along walls and fences. It is not safe for her to go out. Even outdoor places in this crowded state are filled with people, many not wearing masks. So we stay home.
Janey is still doing remarkably well being at home. She seems to be thriving. She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway. Every day is quite similar, but she doesn't seem to mind. It's a low stress life for her. She doesn't really understand at all why we are home, and that is probably good.
A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists. Janey tolerates this, and even seems to enjoy it for a few minutes at a time. However, starting next week it's going to be every day, for 2 hours. I have very mixed feelings about this. I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework. They need direct teaching. But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time. It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing. But it has to do with Janey just not quite getting it. She gets school. She's been going to school for a long time. She knows how that works. But someone on a screen talking to her and listening to her and expecting her to respond? I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know. It's fun for a few minutes, but not for extended periods.
However, it's not like there are really any other options. School can't be held in person right now, and everyone is doing the best they can with that. It's not easy for anyone. In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry. Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.
What really keeps me up at night is how this is all going to play out long time. People seem more divided than ever. Instead of this pulling us all together, it seems to be pulling people apart. That's crazy to me. It's not a matter of politics here. A virus has no politics. But fear can cause divisions, anger, irrationality. I can handle that. But how I fear for Janey, and for all those out there who will always depend on others. She needs a world that is secure enough to leave people feeling they can help others. She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected. I don't think the extremes on either side of any political rift really understand that. She literally needs someone to watch over her, and she always will. And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died. God help us all.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Thursday, April 30, 2020
Tuesday, April 21, 2020
Daddy's thank you to Janey during trying times
Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.
Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.
Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!
And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.
Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!
Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!
Thank you Janey for making me a better daddy and a happier person!
You are the best Janey!
Monday, April 13, 2020
As the quarantine continues...
First of all, I want to reach out to all of you with kids or someone else you love similar to Janey. I hope you are all hanging in there, and I very much hope that none of you have caught the awful virus.
How are things here? Well, mostly okay. Better than I thought they would be a few weeks ago. Janey had a terrible time adjusting to school being closed. For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all. And then, fairly suddenly, she seemed to get used to the new normal. It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life.
The new normal does have some hard parts. One is sleep. Janey's teacher has told me a lot of kids in her class are having trouble with sleep. Janey seems to have chosen a random sleep schedule. She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods. It's tiring for all of us. But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.
Janey also, like a lot of us, wants to do things she can't do. We are being very, very, very careful about social distancing. Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues. We want to avoid it at all costs. So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where. Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony. She is accepting no as an answer more than we would have thought, but she isn't happy about the nos.
We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too. Janey isn't too bad with the Zoom learning. She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas. Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that. I think often how hard it would be if Janey were in a college prep type situation. We can let this be a time of vocational learning. Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.
My own stress has increased while Janey's has decreased, however. I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights. At first, we were able to order groceries online for delivery. Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up. At some point, we will have to shop. That is going to be scary. Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city.
Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet. We are lucky that we have a backup internet, much slower but still use-able. But somehow losing the landlines and cable scared me. I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line. You have to talk to someone live. I have no idea when they will be able to fix the wires. I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress. Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder. I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.
If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness. And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer. Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation" That gave me some nightmares. But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.
Someday, this time will be over. I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See" They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost. We'll get through this. I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.
How are things here? Well, mostly okay. Better than I thought they would be a few weeks ago. Janey had a terrible time adjusting to school being closed. For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all. And then, fairly suddenly, she seemed to get used to the new normal. It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life.
The new normal does have some hard parts. One is sleep. Janey's teacher has told me a lot of kids in her class are having trouble with sleep. Janey seems to have chosen a random sleep schedule. She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods. It's tiring for all of us. But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.
Janey also, like a lot of us, wants to do things she can't do. We are being very, very, very careful about social distancing. Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues. We want to avoid it at all costs. So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where. Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony. She is accepting no as an answer more than we would have thought, but she isn't happy about the nos.
We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too. Janey isn't too bad with the Zoom learning. She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas. Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that. I think often how hard it would be if Janey were in a college prep type situation. We can let this be a time of vocational learning. Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.
My own stress has increased while Janey's has decreased, however. I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights. At first, we were able to order groceries online for delivery. Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up. At some point, we will have to shop. That is going to be scary. Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city.
Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet. We are lucky that we have a backup internet, much slower but still use-able. But somehow losing the landlines and cable scared me. I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line. You have to talk to someone live. I have no idea when they will be able to fix the wires. I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress. Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder. I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.
If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness. And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer. Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation" That gave me some nightmares. But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.
Someday, this time will be over. I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See" They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost. We'll get through this. I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.
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