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.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

Flashback

Janey went back to school yesterday.  It was a good Christmas vacation.  She was happy a great deal of the time, and I think she enjoyed herself.  But she seemed pleased to be going back to school, back to the routine she likes.

She came home in a good mood yesterday, and I think school went well.  But something set her off around bedtime---tiredness or frustration over something she couldn't explain or who knows what.  Suddenly she was screaming and biting her arm and kicking and in a full meltdown.

That's when I said, without thinking, "I don't want to take her back to Bradley"  Bradley is the psychiatric hospital Janey spent time over two years ago.

Tony looked at me in surprise.  Once Janey was calm enough for us to talk, which actually didn't take long, he said "You are usually the one telling me not to jump ahead to the worst possible outcomes"  He was so right.  And I've been thinking about what I said all last night and all this morning.

I don't know what stress flashbacks technically consist of, but I think I had one there.  And I think I have them a lot.  No matter how well Janey is doing, it almost always feels a moment away from disaster.  She can be having the calmest, happiest day possible, and I fear that something will happen and things will go horribly downhill, and we will wind up in a hospital of one kind or another, or wind up getting a call from school that we need to have a meeting, we need to talk about her placement, or that Tony will call me from a ride with her and say she undid her seatbelt somehow and caused him to crash, or that some other random disaster will hit.

Thinking about the whole thing yesterday, I keep somehow connecting it to an article I read, one that on the surface doesn't have much to do with her meltdown or my reaction.  Here's a link to the article...link.  It's about a boy with autism who has won a Rhodes scholarship, after his mother took him out of school and gave up a career in medicine to homeschool him when he was eight.  It's a very nice article, and it's wonderful news, and inspiring.  But for some reason, it bothered me a great deal to read.

I've read plenty of articles about autistic people who have done great things, and they often include a parent's huge devotion helping them along.  I think this one just hit my eye at the wrong time.  Janey did so well over vacation, and I read this just as I was worrying about her going back to school.  There is no way I'm going to homeschool Janey.  I couldn't do as good a job as the schools do, and I need the respite desperately.  What hit me was the devotion of the mother.  Truthfully, I feel I'm pretty devoted to Janey.  And looking at all the parents I know of kids with autism, either in person or through this blog, there is so much devotion out there it's incredible.  But it doesn't all lead to Rhodes scholars.  And I'm not saying there shouldn't be articles about the times it does.  There should be.  But sometimes, despite my better judgement, it makes me feel like I somehow didn't devote enough, or didn't put my devotion into the right ways to help Janey.

Both my flashback and my reaction to the article are parts of the stress that I think most of us parenting children like Janey feel.  No matter how well things are going, we remember when it all fell apart.  No matter how hard we work at being good parents, we can find examples that make us feel like we didn't do enough.  I wish I had a pithy thought to put here, something to reassure myself and everyone else reading this that everything is going to be fine, that we are doing all we can for our kids, that we shouldn't have the fears and doubts we do.  But I don't have a thought like that.  I have only a hope that if you've also suddenly flashed back to the darkest times, if you've read an article that makes you feel like a slacker, that if you have lived this life too, you're not alone.

Accepting Autism Acceptance

Tomorrow is Autism Acceptance Day.  You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name.  I think most of us are aware of autism by this point.  The next step is acceptance, and that is a step not only for the general public for but many of us personally.  Or at least it is for me.

I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never!  Accept autism?  That's not going to happen!"  I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism.  However, I think I'm finally there.  I've figured out what autism acceptance means to me.

Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.

When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others.  It DOES mean accepting that those behaviors are part of how autism affects her.  It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.

When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism.  I don't have to say "Janey is wonderful DESPITE her autism".  I can say "Janey is wonderful partly BECAUSE of her autism"  That's a tough one for most people to take, somehow.  But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.

Autism acceptance applies to ALL parts of the spectrum.

This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey.  I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing.  Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.

Autism acceptance also applies to acceptance of a family's choices

It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is.  Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism.  Some people embrace ABA.  Others do Floortime.  Others have put their children on special diets.  Some use vitamin supplements.  Some use medication.  Some homeschool.  Some have children in residential placements.  There are an amazing number of ways to educate and medicate and provide therapy to children with autism.  We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.

I will close with a video a lot of you have already seen, as I put it on my Facebook page.  It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her!  She also says in the video "I have autism"  I love her sweet voice as she says that.  I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do.  I accept Janey's autism as part of the amazing little girl she is.  I love you, Janey.

Here's the video!

Acceptance and the best use of Janey's time

The last week, I've been thinking a lot about autism acceptance and what it means to Janey and to our family.  I have done some reading about it, prompted in part by my friend's great blog, On the Train With Sophie.  There is so much about whole autism acceptance movement that fits with my own beliefs, although there are parts of the idea I struggle with.  I'm realizing that, like with any philosophy, I need to consider my own child and her own needs over what might be the "rules" of acceptance, and also realizing that what I perceive as the "rules" might be wrong.  All this is a long-winded way to lead up to my thoughts about how Janey learns and how best to respect her time.

We had a meeting at Janey's school yesterday, and as always, I was impressed with the level of caring and thoughtfulness of those working with Janey.  I brought up at the meeting something that has been on my mind a lot---Janey's relative lack of academic achievement.  Despite many years of schooling and many hours of direct ABA type instruction, Janey's learning as measured on concrete academic tests would be considered by most anyone to be extremely slow, if not static.  Janey doesn't consistently know her letters or numbers.  She can't really count objects.  She shows very little understanding of shapes or colors.  She can't read, at least that she shows us except for rare glimpses.  She can sometimes write her name, although she hasn't done that much lately.  She has never drawn anything recognizable.  Her speech, although unique and interesting, is rarely useful in conveying anything but basic wants.  I have to conclude that at least based on evidence we have right now, Janey is not progressing academically in much of any meaningful way.

However, Janey certainly can learn.  I can think of hundreds of ways she's learned over the years, in areas she is motivated to learn.  She can put the TV on the channel for videos, pick through all her videos to find exactly the one she wants, put it on, remember what is coming next, sing along with all the songs and recite all of the dialogue, all that with ease.  There's a lot of learning shown right there.  If she wants her father to cook a particular dish, she can gather all the ingredients needed and bring them to him, including spices and sauces.   She can use YouTube with ease.  She learns songs after hearing them once, and can sing them back in perfect tune with all the lyrics correct.  She has a very good sense of direction.  She can go into any store she's been in before, and if there's something she likes on the shelves, find it again---including big stores like the huge Whole Foods near us.  She can imitate dances she sees on TV, far far better than I would ever be able to do.  She knows hundreds of nursery rhymes.  She knows just what time Daddy is supposed to be home.  I could go on and on.  In many ways, Janey is a very smart girl.

So---is it the best use of her time to work on academics?  Or is having her continue to try to learn to do traditional academics a basic disrespect for who she is?  Is accepting her also accepting what and how she learns?

These are questions I honestly can't answer.  But even if I could, how would I go forward?  For the first time ever in Janey's life, I've had thoughts lately about homeschooling.  Maybe it's because overall, Janey's mood has been good for quite a long period.  But still---I truly don't think I have the energy to homeschool her.  My latest thyroid test showed that again, my thyroid is working very little if at all.  I've been extremely tired.  Some days, I can barely hang on for the 3 or so hours between when Janey gets home and Tony gets home.  And the truth is---I have very much liked Janey's schools and teachers over the years.  I know they care for her, love her and want the best for her.  But schools are set up to teach academics.  I wonder how it feels for Janey, always working on something that is so hard for her, or if not so hard, something she has no interest in.

I am nowhere near ready to make any real changes in Janey's life, not at least outward ones.  But I think I'm making an inward change.  For me anyway, autism acceptance means seeing what Janey is competent at, what she enjoys, what her passions are, and valuing those things, more than looking at what she doesn't excel at and trying to change her.  Janey may never read.  She may never carry on typical conversations.  She may never understand money.  But by golly, she can do some things better than almost anyone you'd ever meet.  I am currently more up to date on the latest music than I have been since the early eighties, just from looking up the songs Janey sings after hearing them (I think) on the radio on the bus.  I am expending my food horizons---if Janey can enjoy sauteed kale with Korean hot sauce, I should at least give it a try.  I'm collecting new nursery rhyme books to try to find a few she doesn't already know.  Janey is leading the way for me in a lot of ways.

I want a future for Janey that makes best use of her strengths and joys and passions, not her areas of weakness.  That, for me, is the meaning of autism acceptance.

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

Why is autism so polarizing?

This morning I was trying to look up methods of teaching autistic kids to read. It was so frustrating, as everything that I found was connected to one fanatical school of thought or another---how to teach using ABA, how to teach while eating a special diet (what does that have to do with reading?), how to teach through floor time...what if you just want to teach them to read, and you don't follow one of the strict regiments? Then I thought of looking at homeschooling autistic kids, not that I am thinking of that---with Janey's love to school, that would be cruel! All I could find about that was other fanatic sites about how much better homeschooling is, and how your child being autistic shouldn't keep you from homeschooling and how the system tries to force you to send your kids to school---nothing about HOW TO TEACH THEM. There must be research or methods out there of teaching a child with autism things like colors and shapes and numbers. Or I am starting to wonder---is there? Is everyone so focused on "curing" the autism and getting credit for that, that no-one just accepts---okay, they are autistic, and now how can we help them learn what they need to know? That is how I feel. I don't think Janey is going to suddenly become non-autistic. I've accepted that. So where do we go from here? How do I help her learn? Is anyone going to help her learn?