Tough realizations about school

I spent a few months living in a hopeful dream world.  I hoped that school could start in person in the fall, and Janey could go back to the high school experience she loved so much.  She could get on the bus early in the morning, have a nice long ride, spend the day with peers, go to music and dance and swimming, take field trips, be with adults who cared for her and enjoyed her, and then taken another nice long ride and came home again, contented after a full day.  

It's hard to believe the changes the last six months have wrought on the whole world.  

There has been no official words on the status of school in the fall for Boston, except that it won't be full time in person.  But after thinking it out and emailing with Janey's teacher, I finally had to face facts.  Janey won't be going back to school, not at all.  

If she went to school, it would be a school experience stripped of everything she likes about school, and everything that is important to us about her schooling.  Being in a classroom of teens with severe special needs, teens with little or no understanding of social distancing or the importance of masks, she would be behind plexi-glass shields.  She would not leave the classroom all day.  Teachers would not be able to touch her.  She couldn't move around.  

Even under those conditions, if someone got sick at her school, it would be closed, and the little hint, the pale shadow of her old schooling experience would shut down again for weeks.  Her school is very close to the area of Massachusetts the very hardest hit by COVID-19.  It wouldn't stay open much.

The bus would likely be impossible.  It was the weakest link last year, often not showing up, changing drivers almost weekly.  I can't imagine it would work, with older drivers, with kids that would certainly take off their masks often, with social distancing.  If Janey went to whatever version of school was available, we would have to drive her.  In Boston traffic, it's an hour's drive each way to her school.  We'd spend 4 hours of our day in school transport.

So...I finally,reluctantly admitted to myself---Janey isn't going back to school.

And distance learning, Zoom meetings?  It's almost an afterthought in my mind to say "No thanks".  Like so many other kids with Janey's kinds of needs I've heard about, Zoom meeting school simply doesn't work, in fact,more than that, it makes things worse.  Imagine a bored, frustrated teen, and trying to keep them from melting down all day, and then add in an hour or two or more of also trying to force them to sit in front of a screen they don't want to watch, one that seems to them to be playing a video strangely featuring some people they recognize, but one where now and then they are asked to say something on command.  A video that tries vainly to meet the needs of a dozen or so kids with wildly different needs, but all with high needs.  Imagine spending the whole time this video plays trying to keep your teen sitting in one place, waiting for their turn to answer a question they wouldn't be inclined to answer under the best of circumstances.  No, that is not school.

And so, one way or another, we are going to homeschool.  I'm not scared of that. It's not my preference, and I'm quite sure not Janey's preference either,but it's what we are going to have to do.

I think it's human nature when faced with a situation we don't like to place blame.  It's almost comforting to be able to have an enemy, a foe to defeat.  There is one in this situation, but it's not human.  It's a virus.  No-one human has done anything to cause this (politics aside, and that is how I generally try to live my life, with politics aside).  Everyone would like Janey to be able to have school in the way she could last year, but safely, and practically, she can't.

I lie awake nights thinking about how I can best educate Janey.  Sometimes, I admit thinking I might not really try, not to formally educate her.  She will be 16 in less than two weeks, and in our state, I think that's old enough to drop out.  I could just call it a school career for now.  But I don't think that's the best plan.  We had planned on Janey being in school until she was 22.  I am still hopeful that after a year or so, she will be able to go back to school.  

I'll write more in another post about how I'm going to try to set up homeschooling.  For now, I'd love to find out how the rest of you out there will be handling school this fall.  I'm feeling isolated, scared, alone, more than I have in many years.  It's such a house of cards, this life we cobble together for our kids, and it takes just a touch for it all to fall apart.  We have gotten, as a world, something more like a hurricane aimed at our house of cards.  It's going to take a while to build it back.

The summer of the virus

I'm thinking of all of you this summer, especially those earlier on in the whole autism journey.  Every day, I picture how hard it would have been to have a summer like this one if Janey was still as unhappy as she was for many years, and if her behaviors in showing that unhappiness and pain were still as intense.  As it is, it's not totally easy, of course, as it isn't for anyone on Earth right now, but it's nothing like it could have been.

We chose not to "send" Janey to summer school.  I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day.  It was a no-brainer to turn it down.  Zoom meetings quite simply don't work for Janey.  We tried our best during the school year, for the hour a day her class met.  At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour.  At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day.  Either way, it wasn't in any way worth it.

I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings.  I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond.  This wasn't the case with all the kids in her class.  Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey.  That surprised me.  But as we all know, every kid with autism is different.  I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.

One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to.  Or at least she has less liking of repetition she hasn't herself chosen.  She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while.  She'll eventually get bored and cycle in something new.  But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well.  I felt for her teachers very much.  They had not signed up to be virtual teachers or educational technologists.  They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way.  And it just didn't work for Janey.

A typical scene this summer, watching videos outdoors

So---the lack of school this summer feels like a huge relief, truly.  I have no idea what I'll do in the fall if schooling is still virtual.  I don't think Janey will be going to that kind of school if it is, one way or another.  We will have to explore our options.  I also just don't know what will play out if school requires masks all day, and 6 foot distancing.  I know that Janey would not be able to comply with that.  She will wear a mask for very short time frames, just to be able to go to the 7-11 and get ice cream or chips, but all day long---that will not work.  I worry especially about the bus---there is no way it would work there.  I worry about her getting COVID, about her teachers or bus drivers or paras or another else getting it from her or giving it to her. It is hard to picture how it's all going to play out.

How are we at home, aside from all this?  Not bad, overall.  Janey has been fairly happy and content.  She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that.  We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30.  The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible.  If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8.  But the amazing thing is she is actually mostly staying on her bed once we say to.  The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever.  It's nice.

It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period.  The only other time she has was when we gave her medication under the supervision of a specialist.  This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on.  It's awful to see her crying in pain, and knowing she doesn't really get why it's happening.  I've done my best to explain it to her, but I don't know how much she understands.  We have been lucky that for whatever reason, she usually doesn't get a period.

I hope all of you are well, and surviving this tough time.  I'd love to hear how you are coping.  Is there summer school where you are?  How do things look for the fall?  How is it going with masks, with the isolation, with the general tension a pandemic brings?  I hope very much you are all healthy and hanging in there, and I send our love.

"Frustrated, Angry, Bored"

Janey has had a tough week.  After almost two months handling the quarentine like a champ, I think she's had enough.  She's been screaming and acting out much of the day, every day, staying up most of the night and sleeping during the days, tossing things around---just not happy.  Last night she had been yelling for hours. Out of desperation, I turned to her iPad's talking programs.  Using the one program she seems to like, Proloquo2Go, I went to the feelings page and asked her to please tell me what she was feeling.  Without hesitation, she picked "hate".  And pushed it over and over and over.  Fair enough.  Then I went to the body parts page to ask her if anything hurt.  She picked "feet", which is something she often picks.  I asked her if she needed a foot rub and she said yes, so we did that, and then she went to the program and picked "legs" and "arms", so I gave her a leg and arm rub too.  Then she exited the program and told me to go away.  The rest of the night was far better---she slept well and didn't scream at all.

So...why don't we use the "talker", as we call it, more?  Because Janey won't.  We've tried and tried.  I've read whatever I could on using it.  I've tried modeling, tried having it open near her as much as we can, tried programming words she might want into it, tried all I can think of.  Most of the time, she strongly rejects it.  She's several times used her limited speech to say "I CAN TALK" when I try to get her to use it, when I've said how it can help her talk.  I don't know why she doesn't like it more.  But I have respected her wishes, partly because trying to force her to do anything is a losing game.  So for quite a while, we haven't even tried it much.

I realized last night that part of why I don't try it more is that I was a little obsessed with using it "right".  I wanted to have her learn to use it for sentences, to move between screens, to try new words with it.  But the times it worked best was when I first went to a screen with a theme, like I did last night, feelings or body parts, or foods or colors or things like that.  She readily chooses when I do that.  I think she can read the words some, and uses them more than the pictures, but I have no way to prove that.  But I am going to try to more often just open a screen for her and let her pick.

This morning, I pulled up the feelings screen again.  Instantly, Janey picked "Frustrated, Angry, Bored" in rapid succession.  Well, that about says it all about life being stuck at home.  I told her I felt the same way, and I wish there was more we could do to help.  The biggest problem right now is masks.  Janey will not wear a mask, and it's the law here in Massachusetts that masks must be worn in public.  There is an exception for people with special needs, and I know we could use that, but the other part of it is that we believe in the masks, and are very scared of getting sick.  Aside from the disaster that Janey getting COVID-19 would be, if she gave it to Tony or me, we could get very, very sick.  So, while the virus is still badly raging in this area, we are stuck.  We can go for car rides to nowhere or play in the driveway, but that's about it.  And who wouldn't be frustrated, angry and bored----especially if you were 15?

This whole virus life is hard on everyone, but especially hard on kids like Janey.  She doesn't have friends to text or FaceTime with.  She doesn't read books.  She can't take walks even right now...if she would wear a mask, there's still the problem of her touching everything in sight.  She is stuck in an endless dull day.  And we are trying, but it's hard to break up the boredom.  I'm surprised it took her as long as it did to get angry.

Autism Mother Myths and Truths

If I picture, without taking time to think much, a typical autism mother...well, do it yourself.  Just form a quick picture in your head of what you'd think of when you think "autism mother".

It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me.  I picture a warrior.  I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day.  This mother works day and night to get her child everything that might possible help them.  She also is completely devoted at home to her child.  She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.

That's not me.  It's not anyone, really, or it's very few people.  I've been trying to figure out where the image comes from, and I think it's mostly from books.  Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula.  Child is diagnosed.  Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it.  Mother decides on a course of action to "cure" child, and follows that course without rest.  There are some tough days, but then there's a miracle breakthrough.  And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent.  Not every book is like that, but a very lot were, and I'm a devoted reader.  Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.

What are autism mothers really like?  They are, at least to start, the same as any other mothers.  They aren't specially chosen. 

I can speak best for myself.  I'm no warrior.  I back away from any fight I can, or even any disagreement.  I'm not good at doing anything without rest.  If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well.  OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was.  I didn't fight for Janey to be diagnosed.  I didn't want her to be.  I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.

However, I would have to say there ARE some traits of autism mothers.  They are traits that we develop, from living the autism mother life.  We don't have them to start, but we have them after some years of raising out kids.

What are they?  Well, protectiveness is one.  We might not be warriors, but we are ever vigilant.  We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.

Ability to live in the moment is another trait.  We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day.  We've learned things can change on a dime.  I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit.  We know how to live with uncertainly and stress, for sure.

I'd say most of us have a pretty good sense of humor.  We can laugh at ourselves, and laugh with our kids.  We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think. 

That goes along with the next trait---an appreciation of what's really important in life.  We have come to know that it's not education.  It's not money.  It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that.  The important things in life are the very little things and the very big things.  It's coffee in the morning and a song everyone sings along with.  It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like.  It's running around in the driveway and getting a good night's sleep.  And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.

I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people.  We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism.  Happy Mother's Day, with much love, to the autism mothers out there.

Middle of the Night Thoughts

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.

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!

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.