Autism Awareness/Acceptance/Action Day

 The name of this day, April 2nd, has changed and changed over the years I've been living the autism parenting life.  I thought I'd write a little about each name's meaning to me.

Awareness

Well, as I've said other years, I don't think it would be possible for me to be much more aware of autism than I already am, at least Janey's form of it.  The name of her form of autism is another thing that has changed over the years---low functioning autism, then severe autism, now it seems, Stage 3 autism.  Whatever you want to call it, those of us who love a child with it are aware of it.  For some years there, it seemed that we were being somewhat silenced by the greater autism community when it came to talking about it.  I can understand some of that.  Those with a less severe form of autism wanted to emphasize the positive, and I like that in a lot of ways.  There is so much positive about Janey, and others like her.  But there is also much in her life that is hard for her, very hard.  And much about raising her that is hard for us as parents.

So, if you didn't know Janey, how could I describe her that would make you aware of her?  Well, she is 17.  She's a beautiful, fascinating teenager.  She makes us laugh most every day, and surprises us and fills us with pride and happiness most every day.  Unlike what the media would often have you believe about girls with autism, though, she doesn't "mask".  If you met her, you would probably know within a minute that she was autistic.  Her speech is limited.  A full sentence is unusual for her.  Even more unusual is talking that is anything other than either a request or demand, or a scripted repeat of something she's heard.  She is not conversational, ever.  Her sleep is our biggest challenge these days, as about two nights a week, she simply doesn't sleep at all.  She is not fully, consistently toilet trained.  She doesn't read or write.  She doesn't really know her letters or numbers or colors, at least in any useful way.  She is very musical---we suspect she has perfect pitch, and we are pretty sure she can remember every song she's ever heard.  She will eat anything---she loves vegetables.  She spends much of her free time watching the same videos and movies over and over and over.  She is our joy.

There's a saying you hear a lot, "if you know one person with autism, you know one person with autism".  There is really no typical person with autism, any more than there is one typical person without autism.  But from meeting so many other amazing mothers and fathers of girls like Janey, we do see similar interests and traits popping up.  Strangely, we also often see similar appearances.  It makes me wonder if there is some genetic connection that ties together girls on the more severe end of the spectrum.  It's one of the reasons I think it's so important to be able to talk honestly about our girls---to figure mysteries like that out.

Acceptance 

In saying acceptance, I assume we are talking about acceptance by the wider world, not parents of kids like Janey.  As parents, acceptance seems like a pretty silly word for what we feel.  Of course we accept Janey.  We adore her.  She's our daughter.  But the bigger world?  I was thinking about that last night, at least our corner of the wider world accepting our particular child with autism.

I was surprised, as my mind wandered, to remember vividly some of the worst moments of non-acceptance, surprised because on the whole, I think Janey is pretty well accepted.  She is known at the places she's taken most, and is like a celebrity at some of them, like the grocery store or the 7/11.  At each of the three schools she's attended, we've been told she is probably the best known student at the school, with everyone enjoying their interactions with her.  It is more common for us to get a smile or a kind comment from strangers than to get anything less positive.

But even the few bad moments---they still sting.  There was the time a woman in a grocery store muttered a swear and a slur about her.  There was the man on a commuter rail who yelled out "Can't you put a stop to that?" when she cheerfully repeating a script.  There was the horrible first visit to her psychiatrist, who shared an office with an internist, whose secretaries told us we couldn't be in "their" waiting room because she was screaming and "she's disturbing the patients", despite the fact we were there, in desperation, to see someone about her having been screaming for days on end.  There was Children's Hospital, where quite literally she was not allowed out of her room for her six day stay.  There was, although I do understand and accept the reasons, the wonderful inclusion school she attended until grade 3, and the day I was told they could no longer handle her, although their mission was to educate children with all disabilities along with typical peers.  And there are the many, many places and programs and experiences we simply don't even try to join---camps and splash parks and restaurants and most stores and concerts and libraries and so much else, places that her behavior would not be accepted.

And so there's still a long way to go with acceptance.  I feel guilty, often, that I don't push more for acceptance.  In an ideal world, Janey would be accepted anywhere public, any time, like anyone else.  I sometimes think about how it would be if some race or nationality or religion or gender or so on was not accepted at all the places Janey would not be accepted at---if schools or camps or restaurants or concerts said they would not accept a person because of something that was a part of them they couldn't change.  We'd be outraged.  But I'm not usually outraged.  Maybe I do need to really internalize acceptance or externalize it---to push for a world of true acceptance.  It's not a battle I have the energy for, much of the time, and that is not something I like about myself.

Action

Action---where even to start?  I could write a book, probably 3 or 4 books, about actions that would help make Janey's life better.  But of the three---awareness, acceptance, action---action is by far the least actually done.  I could attend a support group most every day of year for parents like myself.  I could introduce Janey to the world and cultivate acceptance, and I can write here about her and work on both awareness and acceptance.  But action?  That's a lot harder.  That takes money and work, not just a change of mindset, and honestly, I don't think much has changed over my years in the autism world, nothing much has improved in terms of actual action.

What do I want done?  Number one---respite.  There is no respite.  There never has been, not in a form we will use.  We will not leave Janey with anyone one on one that we don't know well enough to trust completely.  We just can't.  What we need for respite is a program with trained workers, with backup if someone needs it, with regulations in place.  Programs like that exist in most every other country, but not here.  Most countries have a system of overnight or weekend respite parents like us can use for at least several weekends a year.  Not here.  We have no respite.  Every day, every night, every moment Janey is not in school, we are on duty.  Always. 

We have been very lucky with Janey's schooling.  We've had unbelievably good teachers right down the line, with almost no exceptions.  We have had wonderful therapists and paras, too.  But autism schooling in the US is a patchwork.  Not everyone is as lucky as us.  And even for us, there is troubling turnover and busses that just don't show up, and funding that is always in risk of going away, and of course the nightmare of the pandemic, with basically a full year without any schooling at all, since Zoom meeting style teaching simply didn't work for Janey.  Our country needs a plan to educate all people with autism, one that will give them the best possible chance to reach their fullest potential.

And we are now heading fast toward Janey's adult years.  From what I read, it's going to be a challenge even to find a day program for her.  If we wanted to have her move to a group home---well, that's a pipe dream.  Waiting lists, from what I hear, run in the decades.  And from those I've heard about that used group homes, the lack of good pay and respect for the staff has led to some horrible situations where people are hired that should never have been.  The tales of abuse of people like Janey---no.  Unless our country takes steps to provide safe and actually available group housing, Janey will always live at home.  Thank goodness she has brothers, because no matter how much we would like to, Tony and I won't live forever.  Kids with autism don't stay kids.  Our country needs to face that, and to put actual funds and labor into giving the adult autism population life, liberty and the pursuit of happiness the rest of us supposedly have.

Whatever name this day has, I've come to be glad there is a day for autism.  At a very basic level, I'm glad because it's a day for my daughter.  I love you, Janey!  I wish the whole world was aware of how wonderful you are.  I wish the whole world accepted you fully.  And I wish the whole world would take action to give you the best future possible.

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.

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!