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.