On Janey being 14, and a day when I was 14.

The birthday girl

Janey is 14 today.  She seems to be having a good birthday.  Both she and her brother Freddy, who shares her birthday (he is turning 21), like best the lowest of low key birthdays, so for once I am totally honoring that.  No parties, no presents, just a little singing of Happy Birthday and later, a candle in a tiny cake.  For Janey, a good day means lots of rides and lots of food she likes, and lots of us honoring her most used phrase lately---"Go away!"---so she can watch her shows without our annoying presence.

As Janey gets older, I seem to do more and more comparing of her teen years to mine.  I mostly enjoyed my teens.  I liked high school, I made some great lifelong friends, I was fairly happy.  That's how it is in my memory, anyway.  I think about Janey's life and feel sad that it's so limited.  She doesn't have friends.  She doesn't do anything with anyone but family.  To her, a big day is one with a car ride and a Happy Meal.  I want more for her.

To get some real world perspective, I decided to dig up an old diary and look at what my life was actually like at Janey's age.  I didn't write anything on my 14th birthday, but I found the next entry after that, about two weeks later.  It was interesting to read.  My life was not exactly a stream of exciting events.  I wrote that in World History, we played "new games" with Jud the Jester.  Who exactly Jud the Jester is is lost to history, although I sort of remember that new games were a thing for a while, non-competitive games, but what that had to do with world history is unclear to me.  I almost fainted in Health.  I do remember that---and I almost fainted again remembering it, how we were learning about compound fractures, complete with a photo.  I watched an After-School Special.  Although I didn't note which one it was, a quick bit of research showed it was "Where Do Teenagers Come From?"  My sister Carrie had her friend Ruthie over.  That was my day.  It sounds about typical for my earlier teens.

The most interesting part was what I wrote after I wrote about the day's events.  Here it is---"There are a lot of things that happen that I don't write in my diary.  Just mostly because I want to forget them, not remember them.  Nothing awful, you know, just not remember-type things."  That hit me.  Not that I remember what those things were, so I guess not writing about them worked, but it hit me that we do edit our memories.  A lot of life is just---living.  And some of life isn't great, not for anyone.  Somehow, realizing that made me feel better about Janey's life.  It's not a typical life, but I think most of the time, she's happy with it.  If she were able to write a diary about today, or about a school day, as I did, I imagine that it wouldn't be that different than mine---what happened in classes, what she watched on TV, a few things that get stored in long term storage memory like the almost fainting, and other things that get purposefully or not kept out of memory.

Janey is not me.  She wouldn't be me, even if she wasn't autistic.  She is her own person.  She doesn't hesitate to let us know what she likes or doesn't like.  I am glad of that.  She's happier today than I remember her being on any other birthday, because she is doing the things she likes.

And so, as Freddy joins his brother William in full adulthood, I'll keep trying to give Janey the best teenage years I can---her own version of good years, not mine.

Janey is Thirteen

Janey is officially a teenager.  Her birthday was on Wednesday.

Janey blowing out candles

I've been having a bit of a hard time with this birthday.  The day itself went well.  It went well mostly because we didn't really do anything for it.  That was a conscious decision.  Janey's birthdays have a checkered past.  She doesn't like things to be different.  She hates wrapped presents.  She is unpredictable with gatherings---once in a while, she is okay with them, but more often, gathering around and singing and candles and so on upset her.  My wonderful friend Maryellen, who was present at Janey's birth, made her a cake and had us over last weekend and we had candles and a sing then, so I let that be the cake of the day.  On the actual birthday, we had no cake, no presents, no ceremonies, and I think Janey enjoyed her birthday more than she has almost any other year.

Janey on her birthday morning

Some of you might know that Janey's birthday is also her older brother Freddy's birthday.  Janey was born on his 7th birthday.  That gave the day a weird distinction.  From 6 in the morning until 4 in the afternoon, I had no teenager in the house, in the middle of an otherwise unbroken 17 year stretch with one.  Freddy prefers very little birthday ritual too, so his 20th birthday, shared with his sister, was also low-key.  The one ritual we did enjoy, though, is a family dance to the unofficial official birthday song of their shared birthday, "Birthday" by the Beatles, the only song I know that talks about a shared birthday.  We all danced to it, and I have to admit I was crying during much of the dance, a poignant kind of crying.

Janey and her brother Freddy

The way we passed the birthday reflects two sides of my feelings about Janey turning 13.  On one hand, I feel like we've somehow passed some kind of barrier.  We know Janey.  It's taken a long time to really know her, but I think we do now.  We knew what she would like on her day.  She liked having lots of bacon made by Daddy, a trip to McDonalds to get Freddy a birthday breakfast and Janey hash browns, another trip to McDonalds right at 10:30, the minute they started serving lunch
, to get her nuggets and fries, lots of videos, lots of snuggling, lots of music and car rides.  We know Janey well enough now to be able to give her the kind of day she loves, without trying to make it the kind of day I picture a girl's 13th birthday being.

However, the day to me also felt strangely like some kind of deadline.  I wasn't anticipating feeling this, but I did.  I think of myself at 13.  That was the year I entered high school.  I can picture myself very clearly that year, and although of course there were many life happenings far ahead of me still then, in a very real way I haven't changed.  I was me---the me I still am.  And Janey is Janey, the Janey she is now and will be.  And the birthday reflected that Janey.  She might or might not have understood it was her birthday.  She did not have friends over---she has no friends.  She didn't long for some special teenager present, like a phone.  It is not in her realm of knowledge to even know she could want something like that.  She didn't sign up for Facebook, as I remember Maryellen's daughter Julia eagerly doing on her 13th birthday.  She doesn't know what Facebook is.  I picture her life as a line that at junctures like this birthday takes a different route than most life lines.  It is, in a computer word Freddy has taught me, a hard fork, one that is never coming back to the main line.

When I think back on this birthday, I hope what I remember is all of us dancing to the Beatles, laughing and clapping and singing in a way that no only includes Janey, but celebrates her.  And my wish for her is a life full of moments like that, shining moments in her own personal life story.

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

With just a little editing....

Janey, Freddy and I went up to Maine to visit my parents for four days, last Saturday through Tuesday.  My parents live in midcoast Maine, where I grew up, and I hate to have a summer go by without visiting there.  There is something about the summer in Maine that simply can't be found anywhere else, and I want my kids to know a little of that, especially this year Freddy, as he heads into adulthood---he will start college in eleven days.

Janey and the chickens

How did it go?  Well, with a little editing, it went well.  I got to show Freddy a lot of the places that I loved growing up, and he got to spend a lot of time talking with my parents.  Janey loved running around barefoot outside, talking a long walk with Grampie, singing along while Nana played the piano and running around after my dear friend Julie's chickens.  I got to take a lot of deep breaths of Maine air, and of course I took too many pictures, literally over a thousand.

What gets edited out?  Screaming, mostly.  Janey had many, many screaming spells.  They came on suddenly and often without any reason we could figure.  They were intense and overwhelming.  My parents live on a back dirt road, but they do have neighbors, and luckily, they had talked to the neighbors about Janey, or it well could have been thought something awful was happening to her.  The most severe editing dealt with a drive we took up Mt. Battie.  Mt. Battie is really a hill, but it has a view worthy of any mountain on earth, of Camden Harbor and all kinds of islands.  I wish I could have enjoyed it for more than a few moments, but something there triggered Janey and she flipped out and was hysterical, and bit me pretty hard.  We left fast.  Later on that drive, she did all she could to bite and hit Freddy, next to her in the back seat.  It took both our strengths to keep her from hurting him.

The briefly seen view from Mt. Battie

Janey, Nana and Grandpa

Freddy and I can look back on the trip and feel pretty good about it.  I'd say 80% of the time, Janey was fine, and sometimes, she was more than fine---she was a delight.  But that 20%...I don't think much of anyone except someone who has lived this life for a while could edit it out as we do.  My parents did a very good job with Janey, but they were shaken.  Like many people who see Janey's intense moments, they wonder how it's possible to keep going.  They worry about her safety and our safety.

So---is editing a good idea?  Should we do it?  The question is more if we could stop doing it if we wanted to.  If I thought all the time about the awful moments....well, at the very least, I wouldn't enjoy the good moments.  I have to edit in my mind.  I have to think about Janey's delight running after the chickens, the fun of hearing her surprise my parents with yet another song she knows, the wonderful moment when she saw Daddy again and said, confused about the exact terms, "It's your brother Daddy!"  Reversed pronouns and muddled relationship names aside, her voice showed how she felt.

We can edit, and can be left with memories of a good trip.  But the larger world can't be asked to do the same.  And more importantly, I don't know if Janey can do that editing.  How does she remember things?  Does she remember the good times, or remember the scary, out of control times?  How would she tell me she felt about our time in Maine, if she could?  I don't know.  I really don't know.  I hope she would understand that we are trying hard to give her a good childhood, and that we are doing our best, and that we would do anything within our power to ease the tough times for her, if we knew how.

The Autism School Bus

For many years, I didn't use the school buses for my kids. There were lots of reasons---I enjoyed seeing them at school in the morning and afternoon, the bus stops for "regular ed" kids were often far, far from our house, my older son's school for years was within walking distance---but most of all, I didn't like the thought of them being on a school bus.  I saw school buses full of kids around the city, and they often looked crazy, full of kids that weren't staying in their seats, were sometimes hitting each other, were screaming things out the windows---it just didn't look safe.  And I spent many hours of my own childhood on buses.  We had one wonderful bus driver, but others not so wonderful.  Going to high school, the back of the bus was filled with kids smoking, and not just cigarettes.  The roads were often icy or hazardous, and the time on the bus was at best boring, at worst a hothouse of teasing and bullying and physical fights.  So I decided since I was home, I'd just drive the kids.  And that worked.

But when Janey recently changed schools, I decided to give the bus a try.  Part of that was just burn-out.  For 14 years, I had driven twice daily to her school (which the boys went to before her).  It was a drive that took between 20 minutes and an hour, each way, full of crazy turns and traffic and roads with potholes.  Janey is eligible for door to door transportation, so I could get a bus to come right to our house and get her.  And I thought the change of schools would be a good time to make the change of transportation.

Putting her on the bus this morning, I reflected on how amazingly well the change to the bus has gone.  The drivers and aides seem great---professional, calm, nice.  The bus shows up exactly on time, and Janey gets on happily.  I don't have to drive.  However, I think one of the big differences is the kids themselves.

Janey's bus is all kids from the autism program.  And maybe it's not politically correct to say, but I'll say it anyway---I'd rather have Janey ride on a bus with all other autism kids than "typical" kids any day.  Autism seems to lend itself to bus riding.  Everyone has an assigned seat, and they sit there, happy in the routine.  Nobody teases or bullies or hits.  Everyone looks happy to see Janey get on---she is part of the routine now, and I'm sure many of the kids have the sequence of stops memorized, and like to see each one play out.  Nobody is smirking or practicing their latest insult or just being a jerk.  It isn't in the nature of the kids, the boys (all boys except Janey)  Another thing I'm not supposed to say, but again, I will---most all of them have that look that you often see in autistic kids---that beautiful angelic kind of look of innocence.

I'm not living in a dream world here.  I'm sure there are meltdowns on the bus, I'm sure every one of those kids at times is as tough as Janey is at times.  But for the moment when I'm putting her on the bus, I think sometime I don't usually think.  I feel, for a fleeting moment, completely happy with autism.  I am not turning into a "sparkly hearts filled with magic" autism mother.  Life's realities are not going to allow that.  But seeing those kids, seeing Janey sit down in her seat, knowing that she is surrounded by other children that lack the meanness that is a part of almost all the rest of us, I feel at peace with autism.

Holding Our Breath, Knocking On Wood

I've been waiting a few days to post an update on how it's going with Janey's move to the new school.  I have a huge fear of jinxes---I'm a Red Sox fan, and I grew up with parents who believed very strongly that if you spoke about good fortune, it was absolutely necessary to knock on wood.  So I am knocking on wood non-stop while writing this.

How is it going?  It's going, so far, amazingly, astonishingly well!  It's a smoother transition than I think anyone could have dreamed of.  I am getting great reports from Janey's new school from her ABA therapist, who also worked with her at her old school.  I haven't gotten any desperate calls about her behavior.  She comes home tired and a little weepy, but that's after a 10 hour day!  She is sleeping quite well, and she is taking the bus like she's taken it her whole life.

The bus alone is something that has given me respite beyond what I ever dreamed.  For 14 years, I drove one child or two every day to the Henderson School.  It was basically a 20-40 minute drive each way, through city streets.  The drive got to be automatic, and I didn't feel like I really minded it at all.  I listened to music and talked with the boys or tried to talk to Janey.  But it took up a big chuck of day, and any Boston driving is stressful.  Now, before 7 am, I go out my own front door and stand there, and a bus comes to get Janey.  She hops on willingly, and I don't see her again until about 5 pm, when the bus brings her home.  It feels like cheating---it feels unbelievably easy.

The morning, I had one of those moments where I was suddenly taken back through the years to my own childhood.  As we walked to wait for the bus, the way the air felt or the light looked took me to a moment when I was probably Janey's age, waiting for the school bus in front of my own home.  There are not a lot of moments of Janey's life that feel like they are similar to my childhood.  I grew up in rural Maine, the older of two girls, Janey is growing up in urban Boston, the much younger sister with two older brothers.  She is autistic, I wasn't.  I lived in a world of books and friends and the ocean, she lives with videos and parents and the small urban backyard.  But at that moment, I had a strange feeling that the moment was exactly mirroring one I'd lived before---a deja vu moment via her.  It gave me a feeling of connection to her that was very special.

So---we are holding our breath.  I think some people might wonder why we aren't more relieved, more relaxed and happy that things are going so well.  We ARE happy, but we also know that with Janey, things can and often do change on a dime.  She is cyclical, and we made the change during a very good point in the cycle.  Of course I always hope the cycle will stop moving---that this will be how it is forever.  But I know that's probably not the case.  When the tough times come again, how will it go then?  Will Janey scream and refuse to get on the bus?  Will she cry all day at school, and bite and scratch herself?  Will she stay awake all night and be manic with laughter all day?  I hope not.  I very much hope not.  And if she does, I hope that being in a program completely designed for autistic kids will help.  She couldn't possibly have been loved more at her old school, but maybe she needed more than love---maybe she needed a program designed especially in every way for children with autism.  We will see.

So, for now, so far, so good.  A huge thank you to everyone who has made this past week better than we ever imagined it to be.

Analyzing My Sadness

As I wrote about recently, we have pretty much come to the decision that Janey needs to change schools to attend a specialized autism program.  It's a hugely tough decision, for us and for her current school, and everyone is working on making sure we are doing the right thing and doing it in the right way.  Everyone is working to do the best for Janey, and yet, still, I am very sad.

I am sad because I love her school.  I love the people there.  It's become a home away from home for me, for the past 14 years.  When I drop off Janey, I talk a little with people I've known for many years.  I care about them, and truly love some of them.  It's a wonderful school.  But---I know that isn't what is the most important.  The most important thing is that Janey be in a place that can best help her be happy and live up to her potential.

This morning, the sadness hit me very hard.  It was "Dress Up in Green" day at her school.  Although they can't come out and say it, it's for Saint Patrick's  Day.  There are many, many Irish families at Janey's school---probably close to half the families, so it's a big day there.  I dressed Janey up for it, and thought about how much I enjoy things like that---special dress-up days, field days, the excitement of a school just before Christmas, the days that are a little out of the ordinary.  And then I thought about how in an autism school, those days will probably not happen.  Kids with autism often don't like changes of routine.  They like predictable days, not special days.  And I thought about how Janey didn't care a bit about dressing in green.  She doesn't know what St. Patrick's Day is.  My sadness was just for myself.

However, when we got to the school, there was a special surprise.  A bagpipe player was playing for the kids as they entered the school.  Janey walked straight over to him and started lightly touching the bagpipe.  The sweet player showed her parts of it, and talked to her so kindly.  Then he played another song, and the smile on her face was one of her incredible, overwhelmingly wonderful smiles.  She held my hand and started to dance.  As we walked down to her room, she was as happy as I've ever seen her.  And I thought---it is not totally just me that I am sad for.  I'm sad that she won't experience the everyday surprises that a "regular" classroom holds.  She won't be around other children that are living a more typical childhood.  She will be with people that care for her, I know, but there is something given up, too, something hard to define but something important.

This sadness---it doesn't mean we are making the wrong decision, I don't think.  But it's very real.  I have often thought how one of the biggest joys of being a parent is reliving the parts of your own childhood that were special.  When we think back on childhood's special moments, we don't normally think "It was so special that my days were predictable.  I have such special memories of regular school days"  We think about the time we got a huge bag of candy for Halloween, the classroom parties, the field days and the shows and the bus rides to meets and the snow days and the graduations.  At least I do.  I want Janey's life to have those moments.  I want her to be surprised by bagpipers.  That is what is making me sad.

Trick or Treat or Not?

Halloween was my favorite day of the year growing up.  It seemed just plain magical.  You dressed up, went to people's houses, knocked on the door and they gave you candy.  What holiday in the world could be better than that?  Since we lived in the country, people got around to trick or treat by having parents drive them.  I used to think that the only thing in the world that could make Halloween better is to live in a place with LOTS of houses close by, so you could by walking get to TONS of houses and get tons of candy.  Bringing up my boys in a suburb-like part of Boston, that came true.  I loved every Halloween when they were little enough to go out----here's a picture of them looking extra scary one year!

However, with Janey, it was never as straightforward.  She went out with the boys once she was old enough, and I think I can remember her enjoying it when she was 2---excitedly saying "Treat or treat!" to people but not getting the candy part, which was cute.  But then she regressed, and although we still took her out with the boys for a few years, she was not really interested.  She often wound up in the stroller just observing.  Once the boys were big enough to go out with friends instead of us, I would try taking her to a few houses, and usually, she would pretty quickly balk and cry.  Last year, I took her to just one house, and she was not at all happy with that.  And so, this year, I'm not going to try.

I have to admit that it's hard for me to give up on Halloween with her.  It's hard to admit that she really has no idea what it's all about, that she doesn't enjoy it, that trying to get her to participate is much more for me than her.  She doesn't like to dress up, she is scared walking around in the dark, she isn't hugely motivated by candy unless it's just the kind she wants, and she hasn't got the ability to anticipate the fun, which I think is what makes holidays the most exciting as a child.  I remember counting down the days till Halloween every day of October, and when the day actually arrived, it would just seem incredible that it was there.  I'd daydream and daydream about the candy, about trading with my sister, about the way that bag full of treats smelled.  Janey isn't able to do that, I don't think.  She isn't going to feel left out not going out.  So why is it so hard for me?

I think as parents, we feel somehow like we should be completely altruistic.  We like to think we do things like helping Santa or buying birthday presents or making up Easter baskets to make our kids happy.  And we are right, but we also do it because it's fun, because it's a way to step outside everyday life, because we want to relive our childhood a little.  I don't think we are wrong to do things for our own joy some.  Not at all wrong.  That is part of what makes parenting a child with autism a challenge.  Some of the built-in joys of parenting aren't automatically there.  There are other joys, to be sure.  There are alternate joys, and they are real and wonderful.  But I will admit---I wish tonight I was dressing up Janey in a costume.  I wish she had woken up thrilled that the day was finally here.  I wish she was going to be fighting to keep on going to another street, even when she could barely hold all her candy.  I wish we were going to be negotiating over how much she could eat before bed.  I wish all that, and I will admit it.  I wish it for me, selfishly.  I wish it for Janey, as it's a joy she won't get to have.  I am struggling now to think of a way to close that is upbeat, and at the same time saying to myself "Get over it!  It's a minor issue in the larger scheme of things!"  So I'll let that voice of reason close for me.  Happy Halloween.

Games with Janey

One of the challenges with Janey is finding ways to play with her.  Playing keeps her engaged, and it gives us a chance to work on turn taking, speech, imagination---and most importantly, I want her to have fun!  But like a lot of things I try to do with Janey, it's easier said than done.  Actual, structured games like board games are beyond Janey.  Often I resort to baby type games with her, like patty cake or Here We Go To Boston or even basic peek-a-boo.  But Janey's not a baby, and although she enjoys those games, they don't have a lot of scope for expansion.  Imaginative play doesn't really work.  Janey doesn't get it, and since doing real things like using the phone are not something she can do, pretending to use the phone or pretending to put a baby to bed or so on are not fun for her.  If you don't get what you are pretending, it's hard to pretend.

There's a few things that work.  One is playing catch.  Janey loves to catch and throw balls.  She's no expert, and she misses most of the time when catching, but that doesn't bother her.  She's not that bad at throwing!  I crocheted a ball out of yarn and stuffed it, for safe in the house play, and the other weekend all 5 of us had a very good time tossing it around.  We play with balloons sometimes too, and kick a ball around outside on occasion.  Another favorite of Janey's is one she plays mostly with Freddy---the "I'm going to get you!" game.  He chases her around yelling "I'm going to get you!" and then catches up with her and grabs her shoulder and says "I got you!"  She screams in excitement and then runs off again, turning around now and then to say "I'm going to get you!" to spur Freddy on.

The cats provide us with a lot of entertainment, and I am really pleased that lately Janey seems to notice them a lot more.  She likes gently patting them, and she LOVES the game where I pretend they should be able to talk.  When I tell them to say hi to her, she laughs and laughs.  I think on some level she gets it---cats can't talk, but I'm telling them to talk!  She probably relates to that quite a bit.  And I can get out a little frustration with what I say to the cats "Now, come on, Ash!  You could at least say 'Hi' to Janey!  Be polite and say hi to her!"  The cats never do, so we settle for them giving Janey a high five.  That game can keep her happy for long, long periods, until the cats get fed up and leave.

Last night we had a long round of another of her favorites---Ghost.  This means just putting a blanket over her head or mine and saying we are a ghost.  It actually allows a lot of work on skills.  I can ask Janey if she wants to be the ghost next or if she wants me to, I can give her ideas what to say as a ghost (mostly OOOOOOOO, but we mix it up a little with some "I've come to haunt you!" and so on), we can work on pretend and real when I pretend I really think Janey is a ghost, and then she takes a blanket off and I made a big deal of being relieved it's just my sweet Janey.  We can easily involve other people by going in to scare Freddy or William while they do homework.  And I can introduce words---last night we worked on "double" and "two" by being a double ghost together---the scariest kind of ghost of all, I used to always say when the boys were a double ghost to scare me, back in the day!

As fun as the few games Janey get into can be, it's also frustrating work to play with her.  She never introduces new twists on her own.  She'd be happy if I just played peek-a-boo with her for hours on end.  I have to be very careful to try to vary what I say during games, or it becomes a fixed piece of echolalia forever associated with that game, and she gets upset if I don't say the right thing.  And perhaps the hardest part is that Janey rarely seeks out playing.  She'd  probably frankly be happier if I just mostly left her alone to watch a video or bite on a biteable toy.  It can start to feel like a one-man show playing with her after a short time.  But I do have to believe it's valuable time.  Even if she learns nothing from playing, if she's enjoying herself and enjoying my company for a few minutes, that's a plus.  That's what we want our kids to have as part of their childhood---happy interactions with their parents stored somewhere in the memory banks.  I hope Janey's brain has a place with that kind of memory.

Halloween

This morning, Freddy told me this is the first year Halloween means nothing to him.  He's a sophomore now, and probably beyond the trick or treating age, or the dressing up age (although some kinds at his school still do, but it's mostly a 7th and 8th grade thing).  As he was commenting on that, his older brother William said "Today is Halloween?" That brought it home.  That age has passed for them.  And that made me think about Janey, of course, who has no idea today is Halloween.  Do I dress her up, although she doesn't much like being dressed up?  Do I take her trick-or-treating, although that has scared her the past few years when I tried it?  Do I give her candy, although chocolate past noon makes her stay up all night long?

A great new blog about a family starting their journey with autism talked about this issue---give it a read here.  It's a tough decision.  It addresses one of the issues that isn't unique to families with autistic kids---how much of what we do with kids is driven by our own needs to recreate parts of our childhood we loved, or to try to fix parts of our childhood that were imperfect?  It's impossible, I think, not to do that at all, but in the case of autism, it's more problematic.  Dressing Janey up or taking her out in the dark to go to people's houses decorated with scary spiders and skeletons puts her in a situation she doesn't understand at all, and one that might totally terrify and confuse her.  Thinking of it that way, it seems like a no-brainer.  But there's that part of me that says "But Halloween is such a special time!  I want Janey to be a part of it!"  Which in her case, of course, means I want to be a part of it, because she won't be, not in a meaningful way.  I want to recreate that feeling from childhood of how it was to have one night where all the rules were suspended---where you could go to random houses, ring their doorbells and get candy.  I remember counting the days, and when I woke on Halloween morning, feeling truthfully more excited than Christmas morning.  I remember my fantasies of someday living in a suburb or city, where I could get to a lot more houses than you could in my rural town, where you had to be driven to trick-or-treat.  And I did live that dream, with the boys, for a few years, before they were old enough to go out on their own.

Autism changes a lot of things in a family.  In the scheme of things, missing out on recreating childhood memories is a very small, selfish thing to be thinking about.  But I do.