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Thursday, March 26, 2020

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.

Friday, March 20, 2020

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.