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Thursday, July 19, 2018

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.

Tuesday, July 10, 2018

Janey in Lists

Things Janey loves to eat

Juice from the pickle jar
Spaghetti sauce
Boiled greens
Cheddar cheese---must be freshly cut from a big block
Cherry tomatoes
Onions with the skin on

Movies Janey likes

The Spongebob Movie
The Little Mermaid 2
Care Bears---Journey to Joke-a-Lot

Janey's biggest talents

Remembering tunes and lyrics of songs
Smiling in a way that lights up a room
Her sense of humor
Her beauty inside and out
The special way she has of uniquely connecting to each person she loves

The most frustrating things about Janey

When she screams and we can't figure out why
That she isn't fully toilet trained
When she bites her arm
How upset she gets when one time out of a hundred, we insist on watching our own TV shows
Her utter lack of patience

Janey's favorite things to do

Car rides
Rearranging furniture
Rearranging cats

The toughest parts of being Janey's parent

The need to absolutely constantly be on alert
The tiredness when she doesn't sleep
Cleaning up difficult messes
The very loud screaming
Over ten years of the same TV shows

The best parts of life with Janey

Seeing her happy
How often she makes us laugh with her
The many, many times she surprises us with what she says and does
The wonderful people I've met that I wouldn't know if I didn't have her
How she brings our family together

Janey's favorite music

The Beatles
Toby Keith
Christmas music
Black Sabbath
Meat Loaf
Weird Al
The Ventures
Nursery rhymes
Show tunes

Janey's most said phrases

"Snuggle on Mama's bed?"
"Want to take a shower?"
"Go for a car ride?"
"Want to go away?"
"Go to the ice cream store?"

Things Janey hates

Hair brushing
Coming home after a car ride
People saying "just a minute!"
Cats that keep coming back after they are rearranged
Being out of cheese

Things I think Janey could do if I could figure out how to unlock the keys

Use remotes
Access much of her vocabulary
Consistently use the bathroom
Sleep on a regular schedule

My biggest fears regarding Janey

That someone will hurt her when I'm not there to protect her
That she get sick and not be able to tell me what is wrong
That she will somehow get lost
That when I someday die, she won't understand why I left her
That when I am gone, she will not be taken care of

Tuesday, June 26, 2018

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.

Tuesday, June 19, 2018

"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

Saturday, June 9, 2018

The mother I mean to be vs. the mother I am

A few weeks ago, I attended a panel at Janey's school made up of five adult women with autism.  It was tremendously moving and informative.  I left that day determined to work harder to help Janey reach her potential, as the women on the panel had, to strive to ignore labels about functioning, to enrich Janey's life in any way I could, but also to respect her as a person, to follow her lead.

I'm not doing a good job.

The bane of my existance
Let's talk about last night, or, rather, early this morning.  Janey went to sleep about eight last night, late for her.  She woke at 1 am.  Tony tried to get her back to sleep, but she was having none of it.  At two, she came to me in bed and woke me up.  I told Tony to sleep and I would take over.  At first Janey watched YouTube videos on the TV, which can be used as a computer monitor.  She does this with complete ease, but after a while, she wanted to watch things on Netflix or Hulu or Amazon, which is done through an Amazon device.  Although the device is in my eyes no more complicated than a mouse, probably less so, all my attempts to teach Janey to use it have failed.  She wants us to put on the shows for her.  That's fine, except she constantly wants to change shows.  After we spend long moments figuring out what show she wants, she watches it for about 30 seconds and then wants us to switch to something else.  That gets old fast at the best of times, and in the middle of the night, it gets unbearably old unbearably fast.  We hobbled through the night, with both of us speaking harshly to the other at times, both of us not doing what the other wanted done.

So what do I do?  How do I handle this?  I KNOW she could learn to use the remote that controls the device.  But when I try, she screams.  She lashes out.  She gets hysterical.  If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours.  She doesn't quit.  She doesn't give up.  Believe me, I have tried this for YEARS.

I've told myself at times to just accept this, to see it as a time to interact.  Fine.  But it's not an enriching interaction.  It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute.  Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes.  Then it starts again.

This interaction is mirrored in so many others.  Janey asks for a car ride.  She wants to get chips at the store.  She wants a shower.  Nothing else will do.  No variations work.  No amount of refusing, or explaining, or substitution, or distraction, or anything else, works.  When I try something new, she refuses it.  When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.

In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them.  I am never tired, never sleep deprived, never bored, never just fed up.  In my dreams, Janey is different too.  She responds to my patience by trying new activities.  She surprises me with glimpses of the thoughts I know she has stored in her mind.  She is quirkily fascinating.  She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.

The problem here is, of course, that Janey and I am both human.  We are not stereotypes.  We are not perfect.  I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often.  Janey is stubborn, unyielding.  She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are.  She is strong, determined, enthusiastic, yes, but also stubborn and unyielding.  Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.

The mother I mean to be finds a way around the challenges.  The mother I am---sometimes not.  Janey and I am both who we are.  Perhaps that is the message here.  We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.

Saturday, May 26, 2018

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance
I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!
Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

Monday, May 21, 2018

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.