How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

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.

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.

So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.