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.

Relentless Vigilance

One of my goals in writing this blog is to give a glimpse into what life is like with a child like Janey, a child with significant special needs.  It means a great deal to me that many people read this blog that don't have children like Janey, but want to understand her and others like her.  Some people also might read just because they are for whatever reason fascinated by autism, and I can understand that.  I used to read a lot of books about kids with autism, long before I ever had Janey.  I don't so much any more, probably because I read to get away from my own life a bit, but if I hadn't had Janey, I bet I still would.  I was thinking today, though, that there are two aspects of life with Janey and others like her that are almost impossible to explain with writing.  Of course, that never stopped me from trying!

Relentless     That's a harsh sounding word, but it's true. It doesn't end, this special needs parenting gig.  It never ends.  I admire and love teachers of kids with special needs.  They amaze me.  They teach Janey in ways I never could.  And part of that is that they get to go home at night.  I am glad they do.  They couldn't keep up that level of understanding and dedication all the time.  No-one can.  And that includes parents like myself.  I do the best I can, but at the end of some long days, I don't do much teaching or guidance or anything else but survival.  I do what it takes to get through the day---lots of videos, giving in to chips and ice cream, passing up opportunities to teach, playing the same song on repeat for hours just to be able to read a few more pages---all that.  Because there's no end of the day, really.  There is no weekends, no vacations, no retirement.  The job is forever.

You might say---that's true of any parent.  But in a lot of significant ways, it isn't.  My boys went to friend's houses, were in school activities, and by the time they were Janey's age, probably often preferred to have me a bit off-duty.  I never wasn't a parent, but there comes a point with most kids that you start being less hands on.  Now that they are 21 and 18, although of course I'll always be their mother, they are adults.  My active parenting with them is in many ways over.  With Janey, it will never be.

I imagine teachers and other professionals get very frustrated that their techniques and ideas and suggestions often don't get put in place once kids get home.  It's not that we don't want to, but imagine you were teaching a child like Janey around the clock, all week long, all month long, all year long, and you were going to be for the rest of your life.  I bet you would sometimes take the easy way out, be a bit of a slacker---not in ways that hurt or endanger the child, but in ways that let you make it to the next day.

Vigilant    Imagine how it was when your child was a toddler.  Imagine that they could only talk a little, not nearly enough to really tell you about any time you were apart, not nearly enough to explain medical symptoms, not nearly enough to reassure you that all is well in their world.  Then imagine putting them in a school bus with drivers you didn't really know, or having them in a daycare program you weren't completely confident was well supervised and staffed, or, being desperate for a night out, leaving them with a babysitter you found through an agency.  Imagine they somehow, although still being a toddler, looked much, much older, almost like an adult.  Imagine the fears you would have. Imagine how you might not take advantage of desperately needed possibilities for a break.  Then imagine that stage of life never ended.

I worry about Janey every single second she isn't right in front of Tony or the boys or me.  I worry because I've read some awful statistics about how vulnerable she is to abuse.  I worry because I have seen with my own eyes that not all programs for kids like her are anywhere near adequately staffed.  I worry because I took her to the emergency room of what was recently rated one of the best hospitals in the world and because she couldn't talk, because she was difficult to examine, no-one even touched her stomach, although doing so would have likely revealed her high fever was an indication her appendix had already burst.

If you've had a toddler, you know you would move heaven and earth to protect them.  Not that you wouldn't with any child---I would probably stare down a lion if it were trying to hurt William or Freddy.  But they can tell me if something is wrong.  They can speak up for themselves.  It isn't all up to me to make sure they are safe.  I'm able to give that responsibility to them, more each year.  But I can't with Janey.  I never will be able to.  I need to be vigilant, forever.  

Relentless vigilance.  That is it in a nutshell.  That is the part of life with a child with needs like Janey that really can't be fully explained.  It is why stress levels in parents like us are said to be much like those of soldiers in combat. But Janey, you are worth it, a million times over.  I will be relentlessly vigilant for you until my last breath.