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.

Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school

Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

My high school freshman

I thought I'd make good use of being up with Janey in the middle of the night to update a bit here!  I can't sleep lately either, so I don't really mind her being awake as much as I sometimes can.

How are things going, you might ask?  Quite well, really.  And I am knocking on wood all over the place saying that.

Janey started high school earlier this month.  I was VERY nervous about it.  She hadn't gone to a new school for many years, and the high school we picked is far away from our house.  But it had the program we wanted, as I've written about. And so far, so good!  The bus has been more reliable than it usually is, despite having to navigate all kinds of complicated Boston traffic and roads to get her to and from school.  We are getting good reports from her teacher, who although I haven't met him in person yet seems great.  We get a page each day, partly self-reported with stamps by Janey, telling us what activities she had, whether she ate much lunch or not, and whether it was a great day, a good day or a not so good day.  There's only been a couple not so good days!  Her teacher (sort of like her home room teacher, as she has several teachers and they rotate around the 4 or 5 connected rooms that are for her program of 40 kids) writes a little note every day and is great at being touch by email, and that makes me so happy.  I love knowing a bit about how Janey is doing each day.

She even has electives!  She didn't elect them, but they were well chosen.  She has dance almost every day, which is just a dream come true.  I've always wanted Janey to get more of a chance to dance.  She has Very Special Arts most days, which is music and art for special needs kids, and she swims several times a week.  Every Friday, there is some kind of outing.  We send in a little money for it.  She has gone to the corner store a few times, and this Friday to the Dollar Tree!  I love the idea of her getting out and about.

Janey has seemed happy at home most of the time since starting school, also.  Her main activity lately is what you might call close watching of two movies---"Coco" and "The Emperor's New Groove".  She watches them both at least once a day, and seems to have memorized them.  She remembers right where she left off if interrupted, and recites the scene she is about to see when she goes back to watch.  As with so many of the things Janey likes, we agree with her taste.  Coco is a fantastic movie, all about music and (this struck me the other day) the power of music to reach those who might not talk much, in this case the title character of the movie, Coco, who is the main character's great-grandmother, who has dementia.  The Emperor's New Groove is just plain funny, and Janey seems to appreciate the humor a lot.  As she got ready to watch it just now, she recited the beginning "I was the nicest guy on earth and they ruined my life for no reason!"  After school earlier, she spent about an hour with nothing on, no TV or music, happily reciting lines from the movies and singing song clips.  I love listening to her do that.  I know it's echolalia, but it's not the kind of echolalia she used to do more of, frantic and unable to stop sounding.  This echolalia is very varied, and seems to just be thinking aloud, a stream of consciousness recitation of what's in her head.  Every now and then, there's a line I think is from school.."Can you guys please come over to the kitchen?" or things like that.

A few weeks ago, my parents visited, and I could tell at one point Janey was in the exact rare mood to show my father something he hadn't seen before, Janey's flash card abilities.  I held up a big pile of picture flash cards, one after the other, and said "this is a...." and she named what was on the card.  ALL of the cards.  The few she got wrong were close guesses, like calling a fox a dog or a tiger a lion.  There were words in there I wasn't sure she knew at all, but she did.  My father was surprised and impressed.

I've been reading more about RPM (rapid prompting method) and it seems like what Janey will sometimes do with the flash cards is similar to what kids do in RPM sessions, from what I can see.  I have to ask rapidly what's on the cards, I have to move right away to the next one.  It almost feels like magic---the way to glimpse what is in Janey's mind that for whatever reason she can't usually tell me.  But it also seems to have the limitations I've heard several people mention about RPM.  It's not really a skill that carries over much into every day life, at least in terms of what Janey readily says.  The words she uses for the cards are not words that are really part of her limited regular vocabulary, and I am not sure how I can make them part of it.  It seems like a lot of the value of the cards is to help people understand Janey's mind, to show she knows more than it might appear. But if she wasn't in the mood for doing it, she just wouldn't, and I wouldn't be able to push her to do so, even if I were so inclined, which I'm not.  I wish, as I have wished for so many years, that I better understood Janey's mind.

On a personal note, I was finally officially diagnosed this past week with Sjogren's Syndrome, an autoimmune disease that among other things causes one's eyes and ears to be extremely dry, and also causes severe fatigue.  I've had the symptoms for a while, and a new rheumatologist I'm seeing gave the official name to it, although it's been tossed around as likely for years.  I mention this for a few reasons.  One is curiosity if anyone else out there has the autism/autoimmune disease connection, for any autoimmune diseases (I have some antibodies showing I might another more serious autoimmune condition or might get it at some point, but thankfully not now, but they all tie together quite a bit).  The other reason is just, well, sort of to talk about how a child's autism interacts with a parent's own health issues.  My tiredness, which at times have made it so hard staying awake when Janey needed me awake that it's part of why Tony retired as soon as he was able to, has along the years made this journey with Janey a bit tougher.  There isn't a cure for Sjogren's, but I am glad to have a reason and an explanation for some of my issues.  And I hope if any of you have symptoms you might be inclined to dismiss as just being part of the stress and tiredness that comes along with special needs parenting, you will seek out a medical opinion and keep trying to get answers.  It took me a LONG time to get really proactive about my own health.

I've rambled here, I'm sure partly because it's 1:20 in the morning and Janey is still going strong, but as always, I've enjoyed virtually talking with you, my friends, my sisters and brothers by means of our shared challenges and joys in life.

Janey at 15

It's hard to believe Janey is 15.  Some ages seem like a jump to me of more than a year, and 15 is one of those.  It seems a lot older than 14.  14 still seems like part of childhood.  15 feels like definitely teenager-hood, and not that far from adulthood.  It doesn't seem possible.

So, who is Janey at 15?  By 15, I think you are who you are going to be, to a huge extent.  I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then.  I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent. 

When thinking about who Janey is, I both try and don't try to separate out the autism.  I can't and don't want to totally separate it.  It's a big part of who she is, and an important part.  But it's not ALL of who she is.  There is a lot of her that I am quite sure would be her no matter what.

Janey is a cool person.  She has strong likes and dislikes.  She likes music, but not just any music.  She loves British Invasion 60s music more than anything else.  She also likes most songs with a very strong beat---disco, some country, some dance type music.  She is not a fan of soft rock or slow songs or most of the country I like.  She likes some Broadway music, but not most.

She loves food, most of all what her father makes her.  They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions.  She is the world's hugest salami fan.  She's a food snob.  Rarely does a bite of school lunches pass her lips.  Food needs to be fresh or freshly prepared or expensive!

Janey has gotten more into movies lately, particularly just a few movies.  She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home".  We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back.  Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"

Car rides are still one of Janey's favorite things.  If she had her way, we'd spend most of our days driving about on a car ride.  She seems to love more than anything watching the world go by as she listens to music in the car.

Janey has a temper.  When she's told no about something she wants to do, she is extremely quick to anger, to scream.  More than she used to, though, she does get over it.  That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.

A sense of humor is one of the best things about Janey.  She loves to laugh with and at us.  She is so happy when we are all happy.  She rewards funny little songs and sayings with a huge smile and hug.

Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well.  To that person, how would she look?  Well, most people do see her and know that she is not completely typical.  She does some things that look typically autistic, like flapping her arms.  Her speech is not generally in full sentences, unless she is scripting or using echolalia.  It's mostly requests..."Want a car ride?  Want salami?  Want cuddle?"  It's extremely rare she simply comments or states things.  She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions.  We hold her hand most of the time in public, not because she's a runner but because she is unpredictable.  She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.

Janey has grown up a lot over the years.  We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item. 

If you had seen Janey at five or ten, you would probably be surprised at Janey now.  It is why I hope that those with girls like Janey who are younger than her keep up the faith.  My dear friend Michelle told me it would get easier, and she was right.  It did.  Either that, or we changed. 

I don't picture a "typical" Janey much.  A typical Janey would not be Janey.  It would be someone else.  I don't want Janey to be someone else.

But in saying that, I still feel fear.  I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world.  It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone.  I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her.  That is what keeps me up nights.  I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world.  It is why I talk for her.  I feel like I have to let the world know she is part of humankind, just as she is.  Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.

Janey will start high school in 11 days.  I am scared.  I am scared about a long bus ride she will have to take to go to the great program we chose.  I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey.  I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence.  I love her so much.

Janey, thank you for being you.  We have been lucky to have these 15 year with you.  I hope we have many, many more together.

Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 

calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 

quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But still...it's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

A long ago worry resurfaces

For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes.  Basically, she rolls them up so high you can only see the whites of them.  This seems to happen more often at night and outside, when she's a bit tired.  It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it.  Once in a while, she does get upset.  One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up.  I sat her down and covered her eyes for a bit until she got control of them back.  We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.

Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high.  She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is.  I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember.  Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.  

Later that day, I got a call from the school.  Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while.  It had happened twice that day.  I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry).  She recovered from the jerking and was cheerful and wide awake.  Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep.  This hasn't happened with Janey, with the eye thing or with the leg jerking.  However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.

At Janey's physical, we explained about the eye events and leg jerking.  Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist.  She gave us a referral and said we should see one within a month.  As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April.  I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.

When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old.  She wasn't walking then.  She was just barely sitting up, so obviously her physical development was very, very delayed.  We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office.  It's hard to remember the details of that visit, but she ordered an MRI, which we got.  And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.  

I remember getting that call fairly vividly, although I think I've tried not to think about it over the years.  The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better.  We live near trains, so of course a train was going by.  And the neurologist had a very, very heavy Russian accent.  I could barely understand her under the best of conditions.  But from what I could hear, she said that the MRI wasn't normal.  She said something about there being gray matter where white matter was supposed to be, or vice versa.

It's hard to understand why it seems like there was never any followup on the finding.  I honestly can't even remember talking to Janey's pediatrician about it.  Her old pediatrician was, well, not great for Janey.  He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time.  He also just seemed to be overwhelmed by Janey's various needs.  I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us.  Two was her golden year.  She walked, she talked a lot, she was even discharged from Early Intervention.  She was going to be fine.  And then, of course, around age three, the horrible regression happened.

But I did recall looking up what it meant to have gray matter in the wrong place, or white matter.  I found it was a condition called Gray Matter Heterotopia.  There wasn't much info then, and I think I didn't dig too hard.  However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade.  That seemed very far away.  Now, of course, we are in Janey's 2nd decade.  So I mentioned the long ago MRI to Janey's current pediatrician.  She looked up the long ago report, and read me a bit from it.  

The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis.  It also said there were changes to the frontal lobe, nonspecific changes.

Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available.  Here's a Wikipedia article. LINK    It's hard to read, emotionally, what is out there. 

Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading.  What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.

So---something I had put out of my mind long ago is now, of course, back in my mind.  One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms.  But it could also be serving to mask seizures, her pediatrician mentioned.  Is Janey having seizures?  Is this the next thing?  I know seizures are fairly common in autism.  How does the gray matter issue figure in, if at all?  Is there something we should have been doing specifically for all these years that we weren't or aren't?  What is going on?

Amid a season of many worries, this one is hitting me fairly hard, I must admit.  Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out.  That's what we've been doing, and that is what we will keep on doing.  It's what all of us living this life do.

Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!

The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.

As time goes by...thoughts, concerns and moments of connection

I haven't written as much lately as I used to.  There are a lot of reasons for that, and some of them are beyond the scope of this blog.  But some of it is that Janey is steadier than she used to be.  She is more settled into routines, and mostly happier.  For the most part, that's wonderful.  I would never want to relive some of the past years, especially what I think of as the Hospital Years, or the Changing Schools Years, or the Non-Stop Screaming and Arm-Biting Years.

There are still challenges, to be sure.  One is sleep.  For weeks, Janey fell into a pattern of going to bed around 5 pm.  Nothing anyone could do would keep her up.  When someone is determined to sleep, they sleep.  Of course, the other side was that Janey would wake extremely early---often at 1 or 2 in the morning.  And she would stay awake.  When she's awake, one of us has to be at least sort of awake.  We are at the point now where we can cap-nap in the same room as her, but never fully sleep, as we need to be alert to what she's doing, and she often makes sure we are not fully asleep by suddenly thrusting a TV remote or bottle of soda or stick of cheese in our faces and making demands.  After a few weeks of that, we fall into sort of a half-life.  You never feel fully awake or fully asleep.  Knock on wood, she's back in a better cycle---bed about 7, up about 4:30 or 5, which works with her bus arriving at 6:15.

Another challenge, or concern, is as always Janey's speech.  Her speech is highly cyclical, like everything else about her.  Sometimes she talks much more than others.  But overall, her talking has settled into a fairly low point.  She says only a limited amount of things, and even the things she does say are often said in mumbles, hard to understand, or in a very rushed recitation of a phrase.  She has a great speech therapist right now, and a teacher who seems terrific, but these cycles of speech don't seem very affected or changed by anything external.  Lately, her default answer to almost all questions is something like "That one!"  We ask "What show do you want?"---"That one!"  "What do you want to eat?"  "That one!"  I think she truly thinks we can read her mind.  Or she's mentally using a choice board and pointing to what "that one" is.  Whatever it is, it's frustrating.

There was a presentation at Janey's school today about the various high school choices in Boston.  Janey's in 7th grade, so there's another year before I have to choose, but I want to stay well on top of it and do a lot of school visits.  The presentations varied widely, and I think only actually seeing the programs will answer some of the questions I have.  But I'm clarifying my vision of the kind of program I want.  I want one where the challenges are appropriate, where Janey is accepted as who she is.  I think of a video game analogy.  I don't want a program where the sole goal is leveling up.  Janey isn't going to get a high school diploma.  She isn't going to hold a non-sheltered job.  She isn't going to live on her own, or even be able to be alone at home ever.  I want a program where she can be a success by being who she is, not by others striving to make her what she isn't going to be.

It's interesting how as Janey gets older, I think a lot less about how she is disabled and a lot more about just how she IS.  If she is happy, and she makes life so Tony and I can also be happy, and she is cared for and loved, that is wonderful.  The most wonderful times of all are times of shared happiness with her.  I had a moment like that the other day.  Janey, as I've written about often, loves Christmas music.  This year, she is very taken with "O Holy Night".  Not every version, as she let us know firmly when I played through a lot of versions on Slacker Radio with her, but when she hears a version she loves...wow.  I played such a version the other night, Nat King Cole.  Janey and I lay together on her bed listening to it, and our eyes locked.  The look in her eyes---I can't even think about it without crying.  We were both completely overwhelmed by the song, and we had one of those rare moments of pure connection.  They are the moments I live for.  In some ways, Janey lives in a different world than I do, but at moments like that, we are completely together.  It's hard to explain, but I'd guess others have had such experiences with their children like Janey.

I'm thinking of all of you this Christmas season.  I'm having a hard time this year, troubles and worries that are nothing to do with Janey occupying my mind often.  I wish so often I could spend time in person with so many of you I've met throughout this journey.  What I wouldn't give for a bunch of us to sit down and talk and eat and laugh and cry....  I hope December is a happy month for you all.