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.

Observations on a School Visit

I went today to observe a program within our school district, what is called an "autism strand".  It's a section within a larger school that is a collection of classrooms for children with autism only.  Janey currently attends an inclusion school---she is in a classroom with kids with no disabilities, kids with mild disabilities and a few other kids with more severe disabilities like her.  I'm very happy with Janey's school, but to be able to be sure it's where I think she will be best served, I felt it was fair to see what another program was like.

My conclusion?  I still feel Janey is best where she is.  That's not to say I didn't see a lot good in the autism program.  I did.  The two main teachers I saw at work seemed great.  They were enthusiastic, engaged, praised the kids a lot and seemed to be getting the kids to work well.  The rooms I saw had about 8 kids apiece.  There were lots and lots of other people in the rooms besides the main teacher---paraprofessionals, speech and OT therapists, ABA therapists and others.  The kids were busy and for the most part seemed happy.  There were a few behavior incidents while I was there, but they were handled well.  Overall, most the kids seemed to be working at a higher level than Janey does (some were doing work with compound words, others with plurals, for example) but a few kids were working one-on-one with adults and they might have been working more at Janey's level.  The school goes up to 8th grade, and currently does have an afterschool component built in, although the funding for that might be gone next year.

Why don't I want Janey moved?  Well, there are several reasons.  One is that I believe in inclusion, wholeheartedly.  I don't think the best way to educate Janey is in a classroom with only other autistic kids.  I know not everyone agrees with me there, and I respect that.  But I have seen inclusion at work for many years now, from both the perspective of a special needs parent and a regular ed parent, and it works.  It works for both special needs children and regular ed children.  It's no coincidence that Janey's current school scores the highest in the city on many measures (out of MANY elementary schools)---inclusion helps everyone learn.  And Janey learns from her peers.  She is a mimic.  She picks up on every sound around her.  One child that was upset at the autism school made a low screaming noise for a long time.  The kids didn't seem bothered, and I wasn't bothered either, but Janey, whether bothered or not, would pick that up.  She would imitate it. And I'm not saying it's wrong to make that sound, but the goal with Janey is to maximize communication, and I think that is best done by being around children that communicate effectively.

Another reason?  If a school placement is working, why change it?  Janey has had a few tough periods this year, but that's been true of every year and, most likely, will be true of every year.  Overall, however, and this is backed by hard data, she has made progress.  More importantly, for the most part, she has been happy.  Lately, especially, she is truly loving school.  She loves the before school exercise program (which I don't think would work with only autistic kids---it works to include her, because she has many, many models to follow that are following directions), she loves the after-school crafts programs, she loves her student teachers, and she loves (and I love) her special ed and regular ed teachers.  She has wonderful classmates.  Her school has just been approved for a K-12 pathway.  It seems to me like a crazy time to move her away from it.

The last reason is just my gut.  I didn't feel as good about the autism school as Janey's current school.  I'm sure part of that is that I know so many people at Janey's school.  I know she is safe there, and loved.  That is worth a huge amount to me.  But additionally, I like the school physically.  It's clean, it's orderly, it's well-run, it has a great principal---it's just a nice place to be.  The autism school looked shabby, in many ways.  That's a picky sounding thing to say, but it's also something that I think any parent of a regular ed. child would look at.  You want your child in a school that looks cared for, that feels calm and loving.  You want a feeling about your school you can't quite put into words, but you can feel.  I want Janey to stay at a place I feel in my heart is the right place.

Some day, things might change.  But for now, I saw nothing at the autism school that couldn't be provided to Janey just as well where she is, without having to move her.  I am very glad the autism school is there.  It seems like a place that serves the children that go there very well, and I know if I didn't have other choices and Janey did go there, she would be cared for well.  But I do have another choice, and I am very lucky to have it.

The crying white monster on Yo Gabba Gabba

                                                      A NOTE!
For some reason, I've figured out that these pictures come up very high in the Google Images search for pictures of Yo Gabba Gabba.  I hope if you've found them that way, you don't mind that this isn't really a Yo Gabba Gabba blog!  It's a blog about my daughter with autism.  If you'd like to learn more about life with a child with autism, this post----  link --- is a bit of a sum-up I posted recently. Thanks!

Janey's latest passion is Yo Gabba Gabba. For the uninitiated, Yo Gabba Gabba is one seriously weird TV show. It's the kind of TV show I could picture being watched on college campuses after, well, illegal mind altering. It is about a guy, DJ Lance Rock, and his gang of toys that come to life, assorted odd little guys. There's lots of music by alternative type bands, lots of far out animation and weird cut scenes. It's the kind of show you watch the first time and think "what the heck?" But after time, it grows on you.

My favorite part of the show is the very, very simple social lessons it teaches. I think someone involved in the show must have a child with autism, or understand autistic kids, because the lessons are taught in the way we have to teach Janey. No long fables, no coming to your own conclusions, no vagueness. They are saying like "Don't Bite Your Friends", "Don't Hit Your Friends", "Don't Say Mean Things to Our Friends", etc. They are sung over and over, and illustrated with very simple little scenes---one of the monsters gets over-excited and bites his friend, one of the guys hits the other and so on.

And there's an extremely weird character that's on a few shows that truly impresses me, in an off-beat way. It's a crying monster, Gooble. The monster is tall and white and obviously very sad. The other characters do ask why he cries all the time, but DJ Lance Rock pretty much tells them---we don't know, but we will still be nice to him. He's our friend.

It struck me seeing this how very, very rare it is on kids shows to see an emotionally different child. Kids shows are chock full of lessons about not treating people who LOOK different than us differently. Any kid watching TV much at all will learn that lesson a thousand times over. We learn also about kids in wheelchairs, kids that can't see or can't hear, and kids that talk different languages. But when, ever, do we learn that some kids ACT differently? And act differently FULL TIME, not just shows about kids having a bad day and crying and then it gets figured out and fixed? I don't think much, ever.

Janey cries a lot. There are days she cries most all day. She is a lot like Gooble that way. We usually don't know why she is crying. Kids have asked me that, and I don't have an answer, except just that Janey is that way, sometimes. Other days, Janey laughs all day with no reason, or sings the same song over and over, or looks blankly into space, or plays with her hands. This isn't an easy, 20 minute show, problem. It's not that someone took away her toy and she is sad about it, or that she is not feeling good. The emotional displays are part of her. So it amazed me, thrilled me, that a show actually seemed to get that kids need to learn that. It's a great, great lesson. We are all different, not just physically or in terms of abilities, but in terms of how we act. I'd love to see more kids TV that addresses that. If the rise of autism is true, I would bet it's a huge growth market for TV.

Meanwhile, we'll be enjoying the inspired weirdness of Gooble and the rest of the gang.

Two views of a day

View one

We went to New Hampshire to a friend's lake house. Janey cried a good deal of the trip up. Once we were there, five little kids, nieces and nephews of the owner, came over to visit. They were ages 2-8. All of them, including the 2 year old, talked far better than Janey, of course. Janey paid them little attention, although they were very kind to her. We spent much of the day trying to keep Janey from crying fits, fits that confused the kids. I got to see the mother of my old boyfriend, which was great, but Janey, while sitting on her lap, peed all over her. Janey several times tossed items around the yard into the water, making people have to get in and drag them out. During supper, she kept eating food off the other kids' plates. The ride home featured Janey screaming for hours. A long day.

View two

We went to New Hampshire to a friend's lake house. Janey was thrilled to be on the lake. She adored the boat that was there, and spent a long time sitting on it even before she got to go for a boat ride. When she did get the ride, she was happy beyond words... (see picture!) The kids there were all sweet and understanding of Janey. One girl was the same age as her, and treated her like a friend, even saying she wanted Janey to come over soon for a playdate. Janey swam, played outside, ate well and had a blast. We all enjoyed the day a lot.

Well, I choose View Two. But I realize how much my mind edits things. The boys remember far more of View One, especially the screaming in the car. The other people there probably remember View One too. I wonder how the kids see it? They were quite confused by Janey, especially the girl her age. They kept asking "But WHY is she crying? Why doesn't she answer us? Does she do math in school?" They had never met someone with autism before. It was a baptism in fire. But I still will remember View Two most, especially Janey's bliss one the boat. That was me at 7. I lived for time on the ocean in my grandfather's boat. I've always loved the water, for as long as I can remember. So I pick to see that, not the screaming or the lack of toilet training or the non-talking. I pick the part I love.

How Kids See Things

The other day, when Janey and I were walking to our car after school, a little girl who used to be in Janey's class before Janey got held back stopped to talk to us. She said "I didn't know Janey was seven!" I replied that Janey wasn't actually seven yet, she was six. As is often the case wiht kids, that didn't deter her, and she said "I didn't know Janey was six!". Then a boy that also used to be in Janey's class said "If she's six, why is she sucking her thumb?" I noticed Janey was in fact sucking her thumb, which is not a common habit of hers. I didn't have time to think about an answer, and said "Sometimes Janey does things that younger kids do". That was the whole conversation, but it really got me thinking. I've wondered how the kids saw Janey---how they process her behavior. They aren't old enough to get autism, but they must notice that she is different---she can't do what they do, she cries a lot, she isn't too with the program. And I realized what they were saying is a clue---they probably assume she is younger than they are. Although they might know on some level she isn't, they might just see her as a younger kid. Kids don't always question odd things like that---they might just think for whatever reason the school put a two-year-old in their class. It's a thought I liked. It's something I've been thinking about lately---how many of Janey's behaviors would be quite typical for a two year old. And it's something kids can understand---they have younger siblings, or know younger kids, and that's a way they could easily frame her behavior. It might be a good way for adults to see it sometimes, too.