Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.

Lip Gloss and Out of Place Cats

I went all of January without writing a post!  I know I write a lot less than I used to.  I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable.  There is less drama to write about.  But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!

The title here comes from an interesting insight I got into Janey last week.  Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch).  My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't.  But when she got home, we found a variety pack of lip gloss in her backpack, from H&M.  We were quite surprised!  Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss.  The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure!  They helped her put some on after buying it, and reports are that Janey was delighted.

I love finding out in ways like that what Janey likes.  I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home.  It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother.  I often think about how much of Janey's life is controlled by others.  I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much.  I would love to know what clothes she would LOVE, or what activities she would adore.  It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.

The out of place cats?  Janey likes order.  She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved.  This need for order extends to living beings. The cats frustrated her constantly with their randomness.  They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor.  Our older cat, Tommy, spends much of his time now in the bathroom, sleeping.  But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be.  We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile. 

We as humans have learned to give Janey the order she needs. It makes things a lot easier.  But at times, as the years go on, it wears us down, to be brutally honest.  For example, the living room, when Janey is home and awake, belongs to her.  It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing.  But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain.  In the car, the music is Janey's choice.  We listen to what she wants to listen to, and change songs when she says to.  What the rest of us want to hear doesn't get heard.

I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions.  Many people might say "Those parents need to get control back!  They are giving that girl way too much power!"  Or, conversely, they might say "Why is that mother complaining about the small stuff?  Didn't she just talk about how little Janey can say what she likes?  Doesn't she remember how hard things were in the past?"

To those who might say Janey is being given too much control---well, that has been a choice.  We made a choice to do whatever we could to give Janey more happiness.  She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard.  There is still so much in life Janey can't control, can't completely understand.  There is much in life she isn't going to be a part of.  So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.

But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint.  Sometimes, Janey's needs wear us down.  They wear us down because there are no breaks, no credit saved up.  We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down.  Badly.  And once she melts down, her mood can be affected for literally weeks.  It's like her world starts to feel out of balance, and it takes a long time for it to feel right again. 

If you don't have a child like Janey, you might be thinking "She'd learn in time!  She just needs to learn that she can't always have things her way!"  To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10.   Those were the years we gave their wise advice a try.  Those were some very tough years.  We tried, for many years.  It was a failure.  Janey was very unhappy, and we were very unhappy. 

So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up.  We can stand to put her happiness first.  It's what we have chosen.  However, I'm not going to be afraid to admit it is hard.  I don't think I'm doing Janey a disservice to say that.  I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times.  That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can.  It means we are human beings, doing the best we can.

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!

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.

"Talker Machine?"

Janey does things her own way.  We've learned our lesson through the years, and trying to force her to do thing our way doesn't go over well.  This is proving true with our foray into TouchChat.

Last week, Janey's wonderful teacher synched TouchChat at school with our version at home, and also added to both buttons for our family and friends (and cats).  It's fantastic having a way finally to talk to Janey about specific people at school, and to let her talk about people at home while she's at school.  I've been playing around with TC constantly on my own, figuring out all its features.  And we've had it available for Janey to use at all times.

So, how is she taking to it?  It's a mixed bag.  I'll have to say it can be frustrating.  The most common thing Janey does with the program is pick the exact middle button, over and over, though screen after screen.  Doing this creates the sentence "I don't want to listen to CD"  Maybe this is a message Janey wants to get to us, but the thing is, she has basically never seen a CD, never listens to them, and when I showed her some and tried to figure out if she knew what they were or did, she showed no interest.  So like with a lot of things, I think pressing the middle buttons has become a routine, not really a way to communicate.  And that's fine.  If that is a way Janey enjoys using her "talker", and it makes her feel comfortable with it, I am happy.  But I do wish she'd be a little more interested in exploring other possibilities.

I've been doing a lot of reading about getting started with AAC, and modeling the use of the device is a big part of it.  So I am often using it to either say things I want to say to Janey, or to model what she might want to say with it.  For example, if she is irritated we don't immediately take her for a car ride when she wants to, I make it say "I am frustrated" or " I want to go to the store" or "I want to wear shoes" (another way she asks for rides).  This doesn't seem to encourage her to use TC to talk to us, but it does seem to be helping her organize her verbal talking, which is wonderful.  We've heard her use more complete sentences lately than usual.  The other day, she said "I want you to clean my foot" to me, extremely clearly.  The usual way she'd ask something like this is to point to herself and say "you want to clean feet?"  I was startled and thrilled.

The tricky thing with getting Janey into TC is that she is at the height right now of a teenager phase of not wanting me around often.  The most common thing we hear lately is "Want to go away?"  She wants to be alone when she watches her videos, or plays with her regular iPad watching YouTube on her bed, or basically any time we are around harshing her mellow and getting in her face.  So having me cheerily constantly around modeling TC is not really how she wants to spend her time.  I'm finding the time she's most open to it is when she wants something from us.  If you've had teens ever, you know that is about as typical as it gets.  When she wants a ride, or wants us to cook her something, or wants a certain video, she is much more motivated to at least watch us use the TC than other times.

Most nights, as I lie down with Janey to snuggle as she falls asleep, something I do most every thing, I've been having the TC open and playing around with her, saying silly things to each other like "I'm so over that!" and "Whatever!"---one of the great features of the program is it lets teenagers say teenage things like that.  Last night, though, I didn't bring it with me for our snuggle, as Janey has been resistant to it throughout the day and I didn't want to irritate her.  But after we were snuggled down, Janey said "Talker machine? Want to get talker machine?"  That was a wonderful thing to hear.  Whether Janey is using AAC in a conventional way or not, we are having fun with it, and I'll continue to model and play around and do what I can to give Janey a way to augment her verbal talking.

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.

Better Than Typical

Trying on a cape!

It's interesting that I am a lot more cautious when writing about the extremes of Janey's behavior than about the everyday parts of it.  I'm always a little wary of being completely honest about how bad or how good it sometimes gets, although I always do try to be as honest as I can.  But either extreme is something I know can be hard to read about.  I don't want to discourage those with girls like Janey when I write about the toughest times, and I don't want to discourage them by writing about the best times, either, if they are going through tough times.  However, our one night trip last weekend with Janey was so wonderful I feel like I have to share.  And what kept striking me the most is how I imagine it was far BETTER than such a trip would be with a typical almost teenager...

Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year.  It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.

Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way).  We played music the whole time, and she rocked out to a huge variety of tunes.  I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times.  If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!).  She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!)  We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.

In awe of Freddy's dorm

When we got to Skidmore, Janey was just about overcome with excitement.  We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills.  I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt.  It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.

The thrilling elevator ride!

Janey loved the hotel, slept well, had fun at the breakfast, was happy in the car, where she several times looked to Freddy and said "It's Freddy!" in pure delight he was with us again, requested french fries but did fairly well waiting for it to be 11 am so they would be available at a rest stop McDonalds---she was great for the ride home almost all the way, until literally the last few minutes when she was sick of driving, as were all of us.

It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be.  There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun.  When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..."  Well, we all are missing something.  What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing.  We are so lucky to have you as a daughter, Janey.

Trying to give Freddy one fair afternoon

Lately, I've been thinking a lot about sibling issues and autism.  I think this has been triggered by the realization that next year, Freddy will be in college.  Of course, I saw this coming, but now that he's gotten some acceptances and some good financial aid, it's hitting me as reality.  And I've been thinking about how very often, Janey's needs come before those of her brothers.

Our family setup is such that it's often come fairly naturally to put Janey first, or it has seemed that way.  She's seven years younger than Freddy to the day (Freddy doesn't even get his own birthday!) and ten years younger than William.  She's the only girl.  So she's been set apart in the family, not just by autism but by relative age and sex.  And to be honest, I think sometimes the boys have half liked it that we couldn't focus on them as much as many parents.  Teenagers, although they do still very much need parents, sometimes like having a little more independence than some of their peers.  But so much hasn't been fair to them.  I know there are compensations, and I've read and agreed with so many articles and blog posts about the benefits to siblings of having a sister or brother with special needs.  However, I sometimes very, very much wish I could give them all the attention and resources they deserve.

Janey and Freddy

This afternoon, I decided on the spot that for once, I would put Freddy's needs first.  There wasn't anything special about today, except that every afternoon Freddy has left being in high school and living at home is special.  I wanted to let him be the sibling that got the attention.  Well, that wasn't easy.

The first test---Freddy and I decided to watch last night's episode of "The Voice" on Hulu.  A friend of his from school is on the show right now (go, Nathan!) and we knew he'd advanced, and we wanted to see his performance.  Janey had other ideas.  She kept trying to turn off the TV, succeeding a few times.  She whined non-stop..."I want Kipper!  I want Barney!  I want Olivia!"  mentioning every show she could think of, in hopes we'd give in.  And so many times---we do.  It becomes just not worth it to listen to her when we are trying to watch something.  But she actually likes The Voice, when she will watch it.  She likes dancing to the songs, she likes the singing.  And even if she didn't, I was determined to watch with Freddy.  We did see his friend's part, but after that, we both gradually drifted away.  It wasn't worth the fight to see the rest.

Next, I wanted to help Freddy pick classes to sit in on during a visit at a college he's been accepted at next month.  I love things like that.  I LIVE for things like that.  He got to list 3 choices from a long list of classes for both morning and afternoon.  I would have loved to sit there for hours, looking up the classes, discussing the options and just enjoying the whole process.  But again, Janey had other ideas.  After just a few minutes, she decided she wanted to go to the ice cream store.  I said no.  She repeated the request, with growing impatience, over and over and over.  I wasn't giving in.  Finally, she hit me in the face and bent my fingers back.  I felt close to tears at that point.  Couldn't she ever, EVER just for a little, short while, understand no and accept no?  And the answer is..no.  No matter how often I stand my ground and don't give in, it seems to make no difference.  Once she has an idea, a want, that is all that matters.  I did get through the choice process with Freddy, but in a hurried and not enjoyable way.

Tony came home after that, and took Janey for a ride for a while.  You might think---why didn't I just save everything with Freddy for that time?  If you are asking that, you probably haven't had teenagers.  You spend time with them when they are up for it, or not at all.  That's one of the reasons, but the other is that I just felt tired of always, always having to say "Wait until Daddy can watch Janey.  Wait until Janey is asleep"  Sometimes, I want Janey to be the one to wait.

Later, Freddy wanted to watch "Star Trek Voyager".  Tony was home, and usually, Janey will tolerate that show.  For part of the time, she did, but then she decided I needed to snuggle with her.  This is often how she gets to sleep, and almost always, I'll just lie down with her.  I almost did this time too, instinctively, but stopped myself and told her "I'll snuggle when the show is over"  Of course, she wasn't happy.   She just kept repeating,over and over and over "Want to snuggle?  Want to snuggle on Janey's bed?  Want to lie down?" I finally gave in when the show was in its resolving last few minutes.

So---what did I learn here?  I don't know.  I think I learned I often, very very often, give in to Janey, because she doesn't give up until you do, and because the consequences of not giving in are pretty grim at times.  I don't like being  hit, or having my fingers bent, or having someone scream in my ear, or being bit.  But when I don't give in, it never seems to work as it would with a typical kid.  Janey doesn't seem to get my reasons or accept them.  It seems, like so many things, to really make no difference what I do.  Janey does what Janey does.

My boys both are wonderful kids, and they both have told me, emphatically, that they don't feel I've shortchanged them.  But from a young age, they haven't known any other life.  I am resisting the urge to go silver lining finding here.  Autism takes a toll on siblings.  And childhood is short.  My boys are adults, or close to it.  I've tried to do my best, but they have often been shortchanged, and I won't sugarcoat that.

When there's no right answer

Recently, I've gotten addicted to an on-line card game called Hearthstone.  It involves strategy, you can get on at any time and play a 10 minute game, and it's something I can do to motivate myself when I need to get going with other work---"Okay, I can play one game, and then a load of laundry, one more game and a bunch of dishes..", that kind of thing.  It's the kind of at home treat I think every parent of a child with autism needs---just something to help get through the day that requires no preparation and can be indulged in any time there is a few minutes to spare.

Freddy enjoys a game of Hearthstone now and then too, and last night, he asked to play. Which was great, except for one thing.  It was during the first half hour after Janey got home from school.  That first half hour is crucial in determining how the rest of the night goes.  There are very specific rules for what I do during that time, specific and simple.  I am supposed to be on my bed.  Janey runs right in as soon as she is home to make sure I am there.  I take off her shoes and she lies down next to me, and we snuggle.  Then, depending on her mood, she gets up to do other things.  You would think that would mean I could get up too, but you would be wrong.  I need to stay right there.  Like other things in Janey's world, like the TV and Wii remotes, there is a correct place for me at certain times, and after school, that place in on the bed.  It is important to Janey that I be there.  She checks back often to make sure I am where I'm supposed to be, and doing what I am supposed to be doing, which is nothing---I can't read, listen to music, play with the iPad---I am supposed to just be there, in case she needs me.

When Freddy asked to play, I knew I was taking a risk.  Janey's been in a great mood lately, and I wanted it to stay that way.  However, as any parent of a teenager knows, it's not that common to get an invitation into their world.  I knew if I said no to playing with Fred, I wouldn't get another invite soon.  And it's extremely important to me to be there for my boys, too.  Teenagers, and I think boys in general, don't come out and tell you they need you around, they need to talk, they need you available, but that doesn't mean they don't.  They do.  So I decided to throw caution to the wind, get up and play some Hearthstone.

The results were quite predictable.  A few minutes into the game, Janey came over and grabbed my hand, and said "Snuggle on Mama's bed!"  I said "In a few minutes, Janey.  I am playing with Freddy right now"  If you think that worked, you don't know Janey.  She repeated herself, more loudly, and then tried hard to reach over and turn off the monitor.  I didn't let her, and she rapidly got more and more upset.  I could see I was about to lose her into her screaming and crying world.  But I also knew I was going to lose the round of the game to Freddy in just a few moves, something I don't usually do (yes, I'm fairly good at the game, not to boast or anything...)  I decided to hold out, to not quit, to keep playing.  And of course, Janey melted down, a meltdown that lasted until she went to sleep.

Now, what should I have done there?  That is where there is no right answer.  Should I have given in and quit the game, because Janey is younger than Freddy, is autistic, has greater needs?  And also, because I knew the immediate result of not quitting would be drastic?  Or was I right to stand my ground, to give Freddy some time and attention?  Over the years, I know my boys have been shortchanged because of Janey's needs.  Often, with teenagers, that's not a totally bad thing.  I think most teenagers like a little space.  But there's a limit.  Also, I was enjoying myself.  Janey was watching a video while also watching Tony make supper.  She didn't plan on staying on the bed with me.  She just wanted me there.

Unlike in Hearthstone, where making the right series of moves leads often to a win, and in which there is a clear win or lose at the end of a few minutes to show you if you've decided correctly, there is no clear answer so often when it comes to making choices about family life and autism.  I'm sure I've made the wrong choice very, very often, on much bigger issues than this one.  And I'm sure I'll continue to do so.  Autism doesn't play by rules.  It asks more of us than we can give.  We can't do everything right.  We can't be a perfect parent to all our children, all the time.  We have to just make our choices and hope for the best, and accept that it's a rigged game in many ways.  There isn't going to be any clear winner, but hopefully, we can play the best game we can along the way.

The time lost with Janey's brothers

Last night was a little bit of a tough night for William, my older son.  It was the night a lot of colleges gave decisions, and he didn't get into a few he hoped he would.  He's still been accepted at several of his top choices, and he has gotten great scholarships, but that didn't change the fact it hurts to be rejected, no matter how much you know that the schools are hugely selective and that to get on the wait list to two Ivy League schools in a night is not a bad thing.  Especially when you are 18, it feels huge and sad.  I tried to comfort him, and I hope I did, some, but I think he got more comfort from his high school adviser, and that's okay.  He said that she had been with him for more of the journey, so she understood what he was feeling more, and that was fair.  But still...it made me sad.  It made me sad because that is not what I wanted to be as a mother.  In my mothering dreams, I'd be there with my kids, all of them, for every step of everything.  We would have visited all the colleges he had dreams of, together.  We would have worked together on his essays (essays that in this life I have not even read, but that's his choice---I could have done at least that!), I would have had time to always be around when he wanted me around.  The fact that I think he's just as happy I was quite hands-off (he's told me many times that is how he likes it, and actually thanked me for not pressuring him or hanging over him) doesn't matter in my mind.  If he HAD wanted me along for every step of the process, it would not have been possible.  With Janey, I don't have that kind of freedom.  Every trip, every free time block, every day out has to be planned and worked out in advance.  It can never involve both Tony and me, except for rare cases when one of the boys can watch Janey or when she is at school.  And even the smaller times, the random moments of just being free to listen to William or Freddy, are limited.  I can't tell you how many times that that I've had to say "Just a minute---Janey is being crazy and I need to keep an eye on her"  Or the times I've tried to sneak a moment to look at something on their computer and Janey used the time to spill something, or freak out, or come ask for food that she wants that second.

When I read autism memoirs in the past, there was often little mention of siblings, except something along the lines of "Of course the intensive all out full press routine of curing our little guy left little time for his sister, but she loved to help us, and she was stronger for our hours of neglect of her"  Not exactly that, but that's how I read it.  I was determined when it became apparent how great Janey's needs were that I would not be like that.  I hope I haven't been.  Our situation is a little different than some, though, because Janey is the youngest, and the youngest by so many years.  If she is hungry and the boys are hungry at the same time, I can tell them to fix themselves something.  I can't tell her that.  If she is crying and they want me to watch a funny YouTube video with them, I expect them to not mind that I have to tend to Janey first.  If I choose the video first, they know that disaster will follow.  But that doesn't change the fact they are shortchanged.  They don't get my energy, my time and my ears as much as Janey does.  I hope they know they get my love just as much, but I still hate the inequality.

I have great sons.  They are independent, fascinating, wonderful guys.  I don't write as much about them as I would, because they are teenagers and no teenager wants cute little stories about them to be out there in the Wild Wild World of Web.  I don't think they have been damaged by Janey's autism, but I don't think there's any question their childhoods and teen years would have been easier without her being autistic.  Just like I sometimes dream of the daughter that is the one I'll never have, they probably dream of a sister they will never have---one that will be there to listen to them, to share grown-up things with them, to talk to about all the things Tony and I did wrong---the roles a sibling plays.  Instead, they know in their hearts someday they will be responsible for Janey.  They didn't choose to have a child as Tony and I did, but in the end, they will be the ones with the work of caring for her.  I can tell them that's not the case, but in reality, it is the case.

I know the conventional thing to say here would be to point out all the benefits of having a sibling with autism or another special need---how they have learned compassion, learned to love without expecting something in return, learned they are not the center of the world, learned that all people have value.  And those things are true.  But I think, overall, it's not a trip to Holland for them.  It's not just a different but equal sibling experience.  I want to thank them both, my amazing sons, for being kids I can feel so proud of, and I want to say I wish I could be the mother you deserve.  There's endless amounts of love for however many children you have, but there is not endless time, and that's the real kicker.