Anyone else?

I've been wondering lately about quite a few traits, issue, habits and the like that Janey has---wondering if other kids like her share them.  Among the many thoughts I have about the whys of autism is that there is a genetic syndrome of some type that a lot of girls with autism share.  I don't know if that's the case, but even if it's not that, I thought I'd do a post to ask "Anyone else? Have you noticed these things about your child?"  

Lack of strong hand preference

Janey is usually right handed, but sometimes she'll use her left hand for things.  I noticed the other day when she was eating a bowl of pasta, she started out for about the first half holding the spoon in her left hand.  She switched in the middle, but it's not uncommon that she seems to pick a hand at random.  I think it's harder for her to do things with her left hand, but she doesn't always seem to realize that automatically.

Sleep issues that rotate

 

Most kids with autism seem to have some sleep issues, Janey included.  But we've noticed hers seem to go in waves.  She'll sleep a pretty normal schedule for a few weeks, then have a lot of insomnia for a while, staying up all night sometimes and other nights sleeping only a few hours.  Then she might switch for a while to going to bed very early and waking up in the wee hours, like 1 or 2 am, and not going back to sleep.  After that, she might have a period of sleeping a huge amount---12 hours at night and also taking naps.  Then, maybe going to bed very late and being very hard to wake in the morning.  Each pattern lasts a while once it starts.  

Speech that varies in frequency and clearness widely

Kind of like the sleep, Janey's speech goes through cycles.  We'll have a few weeks where she talks much more than usual, and says things we haven't heard before.  Then she might have a while of rarely speaking, and only using a few set phrases.  In addition, sometimes her speech is crystal clear, but sometimes it's almost impossible to understand, very slurred, or she might leave out parts of words.  The echolalia speech is off and on too.  There are times she quotes videos almost all day, and other times she does that not at all.

Lack of menstruation

Despite seeing specialist and having lots of tests, we still have no idea why Janey doesn't get periods.  She had one, at about 11, and a few other very very light ones around then, but since then, not at all.  She has developed normally otherwise, and looks her age if not older, but she just doesn't get periods.  I haven't really heard of other girls with autism having this issue, and I'd be very interested to know if others do, or if this is just a totally unconnected issue.

Odd eye movements

Once in a while, Janey's eyes roll up in her head, and she stares at the ceiling, and doesn't seem to be able to stop doing that for a spell of 10 or so minutes.  She sometimes gets very upset when this happens, and screams.  We have taken her to a neurologist, who says this is not a seizure---a seizure wouldn't involve both eyes.  This seems to happen more in the evening, when it's getting dark but isn't completely dark.  

Very healthy or overwhelmingly sick

For the most part, Janey very, very rarely gets sick.  She can go whole school years without missing a single day due to illness.  She doesn't seem to get the colds or stomach bugs that are going around.  However, the few times she has gotten sick, she's gotten VERY sick.  One time was the awful burst appendix, after which she got pretty much every complication possible and was in the hospital almost a month.  Another time, she got the flu and pneumonia, had extremely high fevers and was in the hospital for a few days.  At that time, some doctors said they wondered if there was something odd with her immune system, something that fought off most all illnesses but caused the few that did get through to be quite severe.

There are other things I could list, but I'll stick with those for now.  I'd love to hear from anyone about these!  

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!

The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

With love to the school I didn't want

Today is Janey's last day of 8th grade, the last day at the school she's attended since the middle of 3rd grade.  And I am looking back with love on her years at a school I didn't want her to go to.

Janey and her classmates

Until late in 3rd grade, Janey went to an inclusion school.  It was the same school William and Freddy went to, and it was a special place.  Each classroom had a regular ed teacher as well as a special ed teacher.  Kids with all kinds of special needs were included, completely. I loved the school, and I loved the concept.  I loved everything about it, right up until they couldn't include Janey any more.

Janey getting her diploma!

The time of transition to the school Janey is attending her last day of today was very, very hard for us.  It was the time I found out that the phrase "crying yourself to sleep" can be literal.  I had pictured Janey at the inclusion school until she was 22.  I had been involved with the school for 13 years at that point, and I wanted it to be 13 more.  But I know now that it was the right decision to move her.  Inclusion is wonderful, but it doesn't work for all kids.  At the time Janey was moved, she was often screaming all day, lashing out, pulling hair, biting.  She had the love and support of her classmates and teachers, but she was far from happy, and she was (although I know you aren't supposed to worry about this, but I do) keeping the other kids from learning.  She wasn't included, because it wasn't safe to include her, and so an inclusion school for her was not at all inclusive.

So we moved her to her current school.  It was hard.  But from the very first day, we were made to feel welcome there.  It was a different feel of school.  It's a much bigger school, less family-feeling, but it was a place that accepted Janey, and embraced her.

Help when she needs it

Janey's early years at her new school were not smooth ones.  I've never, ever forget the call---the day her behavior was so extreme that she went right from school to the emergency room, and then to many days at a psychiatric facility.  But I'll also never forget the love and caring the school showed her at that time---how her teacher rode in the ambulance with me, how the ABA director drove the long drive to where Janey was placed to see her and talk to the staff, and most of all, how the school welcomed her back.  That is, I can see now, what scared me most.  Janey had already been once cast out for being simply too...autistic.  I was braced for it to happen again, for the school to say they simply couldn't handle her.  But they seemed surprised I would even ever think that.  They were committed to Janey.

Music bonded these two!

Over the years at Janey's school, we have had so many teachers that were simply amazing, in their dedication, skill and love.  Beyond that, the staff---the classroom paraprofessionals, the therapists, the program leaders, the principal---wow. They are all people who have chosen to work with autistic kids, and beyond that, people that very obviously love our kids, people that get them, people that see them as the coolest, most interesting kids around (which they are).

Another wonderful friend of Janey's

Love and a bond you can see

We went last week to Janey's moving up ceremony.  I can't even tell you how many different people made a point to talk to me about Janey, about the special routines they had with her, about her love of music, about what a kick they get out of her.  It struck me so much how they were talking to me about the same Janey I see---a cool, quirky, at times stubborn and challenging but unique young woman.

And so today, again I am crying a bit about Janey and her school.  This time, it's not about her being sent there, but about her leaving.  Thank you from the bottom of my heart to the Joseph Lee School for caring for and loving my Janey.