So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus

Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)

Still Screaming After All These Years

This afternoon was hellish.  There is no other word for it.  The morning wasn't any piece of cake either, but things really kicked into gear this afternoon.  It's hot as, well, hell, about 98 and humid.  Janey didn't sleep well last night, and although she slept in some this morning, we all are tired.  I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him.  As I left, Janey was screaming for a car ride.  Freddy was staying with her.  I told him if it got to be too much he could call me and I'd come right home (it's right around the corner).  He was a trooper and handled her.  When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.

She was no longer interested in a car ride.  What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room.  So I did that.  In the course of about an hour, I changed shows literally about 30 times.  Most of these times included tears from her when I didn't immediately understand what show she wanted.  As soon as the show was on, she'd say "Go away!" and point to my bedroom.  I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again.  If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream.  One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.

About every third show, Janey asked me to cuddle on her bed with her.  I did.  The cuddles lasted at most 30 seconds.  And then---back to the shows, the sending me away, the asking for a new show...

You might ask, very reasonable, why I let this go on for an hour.  The answer is...I'm tired.  I tried the more measured approach the last few days, the #3 approach I mentioned in my last post.  I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well.  To say the least.  This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy.  She does ask to change shows, but not at that pace.  She does scream, but not constantly.  But today, whatever haunts her brain at times was in full force.  I think it's OCD.  The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.

I know those feelings.  I've had those feelings, so many times.  I am on medication for those feelings.  I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read.  But Janey doesn't.  To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities.  And often, doing them for a while calms her.  Not today.

After an hour, I was at the end of my rope.  I turned off the TV and suggested a shower.  That often can break the chain.  Not today.  Janey did want a shower, but she screamed all during it.  She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements.  If it breaks, there will never be another one.  It didn't break, but it hit the floor hard.  Janey got out of the shower after a few minutes, still screaming.  I was feeling shaken.  I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone.  For a long, long, long time, after I hung up, Janey screamed.  I spoke to her as soothingly as I could, while literally praying for calm.  I am fairly agnostic, but you know the saying about foxholes.

And then---Janey calmed down, for now.  I put the TV on computer mode, so she could pick her own videos, which she is doing.  She hasn't asked for anything during the 15 minutes or so it's taken me to write this.  Just now she's come over and asked for a car ride.  Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile.  It's too dangerous.  So, she has settled for a walk to the store.

Why do I write this?  It's not, as sometimes parents like me are said to be doing, to get sympathy.  Raising Janey is my job, and my privilege.  Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!"  or "I could never do what you are doing!"  Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them.  It's not to try to get help.  I've given up on that.  The kind of help that would actually, you know, help, doesn't exist.  Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand.  I would not put Janey or anyone else in the position of having to try to handle this kind of day.

Why do I write about days like this, then?  I write so others living this life know they aren't the only one.  I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me.  There are lots of people living this life.  I write because that's what I do.  I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing.  I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.

But I also write for Janey.  I write because she can't.  I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am.  She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us.  She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing.  She's dealing with a world that doesn't always welcome her kind of diversity.  She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can.  And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.

Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

Open Letter to Staring Lady

Dear Staring Lady,

I was the woman sitting next to you in the fast food place that will remain unnamed, in the somewhat snooty suburb that will remain also unnamed.  We were both with our husbands and one daughter.  Your daughter was about three, a very cute and obviously bright little thing.  My daughter was 13.  She was the one you were staring at.

You know, you forced me to admit I've been lying, to myself and others.  I have been saying that staring doesn't bother me any more, that I don't even notice it.  But I guess what I really meant was some kinds of staring don't bother me.  Little kids staring?  No problem.  The kind of staring that also includes a smile, a look that says "Your daughter is beautiful and interesting.  I see she might also have some kind of disability.  I'm pleased to see her, and kind of fascinated"   That kind is okay too.  But your kind of staring?  Just plain old gaping, openly and for long, long moments?  No, I'm not okay with that.

The thing is, we don't often eat in public.  But we decided to try it, today.  And we were thrilled at how well Janey did.  She was wonderful.  No screaming, no running around, no outbursts or tantrums.  She was happy.  She sat eating her food with joy.  In line, before that, she was so happy she jumped a bit, but not in a way that would affect anyone else.  As we told her over and over, we were very, very proud of her.

But you stared.  You kept looking at us, and not with a nice look.  It was a look that seemed to say "Why are weird kids allowed to be out here when I'm trying to have a meal with my perfect family?"  Maybe that isn't what you were thinking.  But you sure fooled me.

You know, I can judge too.  I didn't stare, but I listened.  I listened when your little girl got upset because you got her grilled nuggets, not ones with breading.  She wasn't used to that.  She said "These aren't nuggets!  They are CHICKEN!"  I thought that was pretty cute.  But you insisted she eat them.  She got upset.  I was thinking "What's the big deal?  Who cares?  You have a daughter that can talk, that can express opinions.  Enjoy that!  Get her some regular nuggets if that's what she wants!  Or at least say something to her to let her know you understand change can be tough.  Don't you get that it's amazing, it's a small miracle, it's something to treasure, that you have a child who talks so easily?"

I could understand your staring a little more if Janey could possibly have been bothering you in any way.  But she couldn't have been.  She sat there and ate, much more nicely than your little girl.  Okay, it was obvious we had to help her with a few things.  It was obvious, probably, that she was developmentally not where most 13 year olds would be.  But is that something that is so bizarre, so creepy, that you need to STARE ALL DURING OUR MEAL?

It's funny.  The rudest people, the people most prone to staring, seem to be the ones that have lives that on the outside look enviable.  We don't get stares much in the convenience store near our house, the one frequented by an eclectic mix of folks, few of them looking like your suburban ideals.  In fact, there and in the stores in our section of the city, Janey gets mostly smiles, sometimes hugs, sometimes high fives.  Or she gets no notice at all, which is fine too.

You could have smiled at us, even once.  You could have talked to Janey.  You could have glimpsed at her subtly, if you had to.  You could have ignored her completely.  You had a lot of options.  But the one you chose sent a pretty powerful message.

As your child whined about her nuggets, Tony and I tried to ignore you and talk.  Our conversation ambled to somehow talking about how in cartoons, if you get on a scale and you are very heavy, the pointer on the dial of the scale pops off and spins around in the air.  I said something like "whoa-whoa-whoa-whoa", imitating a spin, and spun my hands around.  Janey loved that.  She started saying it too and spinning her hands---not loudly, but hilariously.  We all had a good laugh.  We enjoyed that moment a lot.  I dare say, we enjoyed it a lot more than you were enjoying lecturing your three year old on healthy eating.  I hope you never have a child like Janey.  You might think that's a kind wish.  It isn't.  You'd be lucky to have a child as much fun, as fascinating, as beautiful and as special as Janey.  Stare at that, lady.

Sincerely, A Proud Mother

What Community Means

What does it mean to be part of the community?

I got a list of summer camps today.  There were hundreds listed.  Janey would be welcomed at none of them.

When searching for after school activities in this area, a big urban area, there are almost none that would accept Janey.  One great exception, which is not close enough to home for us to utilize it, is the Boys and Girls Club.  I wish the one with the fantastic sounding programs was not about an hour's drive from us in afternoon or evening traffic.

A younger Janey and her brother William, in front of our house

The city is full of plays, stores, concerts, museums, restaurants, movies----almost none of which I could take Janey to.

There are lots of wide open spaces around here.  Might be great for Janey---if not for the dogs off leash that run up to her, with well meaning owners saying "Oh, he won't hurt her!  He loves kids!".  Yeah, but Janey is terrified of your dogs, and that makes her unable to use yet another public place.

So, sometimes when I think about including Janey in the community, I get discouraged.  Or I laugh a bitter laugh.

This would be much harder to take if it were not for the fact that in our own little neighborhood, we have found community.

Our neighbors on both sides are wonderful people, people that delight in Janey.  When Janey screams outside, or laughs manically, or just is her own unique self, it means the world to me that I know she is accepted and understood by those living closest to us.

Anyone who has read this blog knows about Janey's love for the "ice cream store", a store that is currently a 7-11, although it's changed names a lot.  We go there almost every day.  She is always welcomed by the staff, and increasingly, by the regular customers.  I can't tell you how many little kindnesses she has been shown there.

The closest few grocery stores know Janey well, and go out of their way to make our shopping with her not only possible, but fun.  One of the workers at the local Shaw's Supermarket has a grandson with autism, and has actually given Janey presents and always gives her a hug.

Janey's new bus aide lives in our neighborhood.  She walks over every morning to ride the bus with Janey, and her sweet, kind nature makes our mornings.

We have a little bubble here, a small world where Janey is truly included in the community.  We have often noticed that she is more accepted here even by people who don't know her than she is in many places.  Our neighborhood is working class.  It's never been gentrified, and probably never will be.  It's not a fancy place.  And perhaps that's part of the reason it's accepting.  People here are not necessarily living the American Dream, defined strictly.  There seems to be more room in their worldview for those who might not be following the script of "good schools, good college, good job, nice house, good vacations, comfortable retirement".

So what does community mean?  It means a place where you are included, where you are accepted and valued and allowed to be part of the action.  We might not have a community in the sense of formal things like camps or lessons or culture, but our neighborhood has made Janey a community member, and that means so very much to us.

I wish the whole world was open to Janey.  In an ideal world, it would be.  But for now, it's good to have our own little corner of reality where Janey is part of the community.

The Pepsi Challenge of unlocking Janey's knowledge

The other day, Janey and I were at her favorite after school place, the "ice cream store", which has been various chains and is now a 7-11.  She wanted soda, and I took a diet Coke out of the cooler.  She usually drinks just a sip or two and then Tony has the rest, and he is diabetic, so we get diet.  I hate diet soda, and I try to avoid corn syrup, so I don't drink regular soda usually (and of course all soda is unhealthy and we shouldn't have it and all that...but anyway...)  As we walked toward the register to pay, Janey yelled out "NO!"  When I asked her what was wrong, she grabbed the soda from my hands and said "No!  PEPSI!"

Janey looking ready to take on the world

Well, that was a huge surprise.  I don't think we've ever used the word Pepsi at home.  Not that we are opposed to Pepsi, but we just call soda "soda".  I had no idea, no idea on earth, that Janey would have the slightest idea there is a difference between Pepsi and Coke, or in fact even that there is a difference between store brand soda and brand name soda.

We went back to the cooler and I got a diet Pepsi out.  Then Janey surprised me again.  She said "NO!" and put back the diet Pepsi and got out a regular Pepsi.  Again, I was stunned. I had no idea she knew there was a difference between diet and regular soda.  So we bought the regular Pepsi, Janey had her usual few sips, and that was that.

I've been thinking a lot about this.  Janey doesn't often tip her hand and let us know what she knows.  Weeks or even months can go by without her saying a single new word, or doing anything really new.  But it's up there, stored in her brain.

When I got Janey's progress reports from school last Friday, there were surprises there too.  In OT, she has been typing the letters of handwritten words into the computer, to get the YouTube video she wants.  I was shocked she was able to do that, to match up written letters with keyboard letters.  The report said at first she typed each letter multiple times, but now she was learning to just hit each one once.  She has also been identifying classmates using TouchChat, an assisted communication program.  I didn't know she knew her classmates apart, to say nothing of being able to pick out certain ones.  At home, she often has trouble giving the right names to her two brothers even.

The problem with knowing that Janey has knowledge she doesn't let on she has is that there isn't always, or even often, a way to get at that hidden knowledge.  It's not very transferable from one context to another.  Like the thousands of songs I know that Janey knows by heart, the knowledge is stored in her brain but comes out only when she wishes it to, when the moment is just right.

Sometimes, though, I think Janey wants to access brain files and she can't, or she can't translate what she wants into speech.  The other day, she came home singing a tune I didn't recognize.  Then she wanted a video, and kept saying names of videos and then getting upset when I actually put them on.  Finally, after a long run of this, by chance she saw the icon for "Yo Gabba Gabba".  I read through the names of all the episodes, and she stopped me at one.  I put it on, she smiled a huge smile and in a minute I heard the tune she'd come home singing.

I was almost in tears thinking how it must all feel.  She knew exactly what she wanted, but the words didn't come.  I didn't remember the tune, and she couldn't think of "Yo Gabba Gabba", or couldn't get her mouth to say the words.  I'm glad we figured it out, but how often does this happen to her?  I know how I feel when something is at the tip of my tongue and I can't quite access what it is.  That's a very, very frustrating feeling.  What if I felt that all the time?

William and Freddy always picked Coke...

I wish I knew how to better help Janey say what she wants to say.  I am sure that much of the time when she acts out and I don't know why, it's from not being able to communicate.  I need to keep in mind the Pepsi incident, and try harder to give Janey a way to have her say, to get her non-diet Pepsi.  It's my personal Pepsi Challenge.

The Long, Cold Days

Growing up in Maine, at a certain age, people seemed to have a brain subroutine that suddenly clicked into action.  When it did, they started going to Florida for the winter.  There are whole towns in Florida that are mostly populated by people from Maine.  I never really understood the urge.  I liked winter just fine.  But that subroutine must start at around age 51, because this year, it kicked in hard for me.

It's been unusually cold here.  Today is the first day above freezing since Christmas---a very long stretch for Boston.  Night after night has been below zero.  It's been windy a lot, and last Thursday we got a pretty good snowfall.  Janey went back to school after winter vacation last Wednesday, but then Thursday and Friday were snow days.  Today was a school day again, finally.

As you can guess, Janey has been having a hard time.  It's been hard for everyone, but I dare say even harder on her than most.  Janey doesn't ask a lot to be content, but she does want her days to contain certain elements---a car ride, a walk to the store, a bus ride to school in the morning on school days, predictable arrivals and departures of the people she cares about.  The cold and snow and vacation have thrown that all out the window, and it's tough.

Last Thursday night, as the storm still raged, Janey decided she needed a car ride.  She asked, over and over and over, politely and then more insistently.  In case we didn't get what she was saying, she asked other ways "Put on shoes?  Put on coat?  Music in the car?"  We tried very hard to explain that even if we had wanted to venture out in the heavy snow, our driveway was completely blocked off by the huge pile of snow the plow had left.  At one point I even took her outside after bundling her up hugely, and showed her the snow covered car.  It made no difference.  She pretty much cried herself to sleep.

On Friday, in the horribly bitter cold following the snow, Janey wanted to go to the "ice cream store", where she gets, despite the name, chips.  I tried to tell her temperatures were in the single digits, that the wind was whipping hard, that it would not be a fun walk.  I finally did give in and wrapped her up and we did the short walk---probably ill-advised, but she wore me down.

One of the toughest things has been the sudden unreliability of the school bus in the morning.  All year until now, the bus has been arriving very, very promptly at 6:15 am.  Early, but it works.  The afternoon bus is still exceptionally on time, and has a wonderful driver and aide, but the morning bus seems to have completely fallen apart.  The last 4 days there was actually school, it has just not shown up.  There is a radar app for seeing where it is, and one day, it just skipped Janey---went to all the other stops, but skipped her.  When I called the transportation number, they said the bus didn't have an aide, so it couldn't pick up Janey.  We drove her to school, found the bus, and saw the aide was on it, just fine.  Another day, the aide waited in his car by our house for the bus which again didn't show up.  He drove Tony and Janey to the school, which he probably isn't supposed to do, but we were glad he did.  Today, the bus seemed by the radar app to just completely skip all the stops except the ones right near the school.

I am not a confident driver, and driving to Janey's school is not an easy ride, especially when the streets are half filled with snow.  So Tony drove us (except the day the aide did) and he winds up going in late to work.  We have let the appropriate people know about the bus problems, but the truth is, at 6 in the morning, if the bus just doesn't come, there's not a lot that can be done that day about it. I wonder if the powers that be or the driver get how hard it is with a child like Janey.  She's outside, waiting for a bus that never comes, desperately wanting to do what she feels she is supposed to do, just get on that bus.  We wait and wait and wait, and maybe it comes or maybe it doesn't.  Luckily, Tony is still home at that hour, because keeping her from freaking out while waiting is a two person job.

I go into this in such detail because it illustrates how even fairly little things become big things when you have a child that simply doesn't understand changes in routine.  I feel like crying for Janey when I think about it.  I think the world is a very confusing place for her, and she holds onto the touchstones of the routine very closely.  She can be stoic about much of the whirling confusion, but by golly, she needs her car ride or bus ride or store walk.  It is beyond her to understand bad roads or aide requirements or buses running late that might skip kids to catch up or frigid temperatures keeping us from store walks.  Her sadness and confusion when things can't be as usual are very real and very strong feelings.

I hope it's an early spring.

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.