A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

Realistic Dreaming vs. Giving Up

Lately I've been thinking a lot about how my vision of Janey's future affects her, and affects how we spend our time with her.  I've been doing a little soul-searching.  Am I selling Janey short by how I envision her future?

After a lot of thought, I actually for once cut myself a break and decided---no, I'm not.  To show my reasoning, a little analogy.  Say I bought a Power Ball ticket (which I don't, but I could of!)  It would be fine to dream about how life would be if I won.  I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts.  And it's true that it's POSSIBLE I'd win.  It wouldn't be likely, not at all likely, but it's not impossible.  There's nothing wrong with that kind of dreaming.  However, what if I decided to live life assuming I WOULD win the lottery?  What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending?  Most people would agree that wouldn't be the best course of action.

I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own.  I dream those things for her all the time.  I am open to those dreams coming true.  However, Janey is ten.  She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed.  She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital.  Of course, there are not exact odds for life outcomes, because there are too many variables.  But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey.  If Janey were four instead of ten, the odds would be hugely different.  Many, many four year olds with profiles like Janey go on to do many of the things on my list.  Quite a few six years also do.  But as the years go by, the numbers get smaller.

Does this mean I'm giving up on Janey?  Not in any way.  It means I am using reasonable odds to decide where to put our time and resources.  Janey's time, her time RIGHT NOW, is valuable.  Another analogy---Picture a couple that wants to have a very comfortable retirement.  In fact, they are obsessed with saving for retirement.  As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement.  They don't eat out.  They don't take vacations.  They don't have reliable cars.  They don't spend a cent they don't need to.  And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so.  They have lived many years not enjoying the right now.

When I have time to spend with Janey, how should I spend it?  Janey has been in school for eight years now.  She can't name letters.  She can't add simple sums.  She can't reliably identify shapes or colors.  When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills?  I would say no.

Instead, I choose to invest in the now.  Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s.  I love the stories behind the songs Casey tells, and Janey loves much of the music.  She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it.  When she hears a song she hates, she turns off the music and we move on.  But while the time lasts, I'd say it's time extremely well spent.  Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.

My dreams for Janey, my dreams that I think truly can come true?  That she have a meaningful life---one with joys and interests and respect from those around her.  Success isn't the same for everyone.  I think being realistic about what Janey's future might be like is not giving up.  It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.

Allowing ourselves to feel sad

Yesterday on the Rarer in Girls Facebook page, there was a great discussion about times when we parents feel down about our children's autism.  It made me think about how at times, it seems like we are being told that we aren't supposed to feel that way---that we need somehow to always stay upbeat, positive and forward-looking, that we need to never stop and feel sad or discouraged.  I find blogs like that sometimes, and to be perfectly honest, they are sometimes tough for me to read, because they make me feel very guilty that I can't maintain that level of positive feelings and optimism.  The discussion yesterday made me think.  I think it's only human, only natural, for us to feel discouraged, sad, down and even despairing at times, and we should not feel like that makes us bad autism parents.

I think back a lot to a day when my younger son, Freddy, was almost 11.  I woke that morning and checked on him, as his asthma had been acting up the day before.  As soon as I saw him, I knew he was in very, very serious shape.  Every breath was a struggle.  His chest was drawing in horribly with every breath.  We drove at top speed to the hospital, and within a minute, he was in a room being treated.  The whole day was like a nightmare.  They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure.  He was admitted to the hospital.  That night, his heart rate showed signs of a possible heart defect.  I remember sitting by him as he fell asleep, still breathing with trouble.  I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed.  Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive.  But if someone had said it was wrong for me to think "I wish he didn't have asthma.  I wish this hadn't happened"---well, I don't think most people would think that.  And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.

However, with Janey, with autism, people sometimes do think that.  They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY.  And that is not true.  That is so far from true that it makes me angry to even think about.  Autism is NOT Janey.  Autism is something she HAS.  My own personal beliefs are that autism is an auto-immune disease, in Janey's case.  But whatever brings it on, it's not a choice.  It's not how Janey has decided to be.

Another parallel between autism and asthma is that there is a huge spectrum.  There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running.  Thank goodness, that is what Freddy's asthma had evolved into.  If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life.  Janey's autism is on the more severe end of the spectrum.  I can hope and dream and aspire to many things for her, but in reality, they are unlikely.  It's very unlikely she will ever live on her own, or marry, or have children, or hold a job.  I can hope for these things, but in many ways, I think that does Janey a disservice.  It's denying who she is and what she needs to be happy.  And even if those things happen, that doesn't change the RIGHT NOW.  If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads.  Being realistic about Janey's autism lets me meet her where she is right now.

The discussion on Facebook talked about the sadness of dreams for the future being changed by autism.  I think this is a very valid reason to feel sad.  It's not unique to autism, but the level of changed dreams is what might not be understood by some people.  The term "dream" might be the issue here.  When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams.  They are well within what most of us do in life.  It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do.  It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that.  Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.

The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD.  I put that in all caps because I AM shouting it.  I love Janey as much as I could possibly love anyone on earth.  But I am sad, so often very sad, about the limits that autism has placed on her.  And I won't apologize for that.

In Dreams

I rarely dream about Janey, or any of my kids, or even my husband.  For whatever reason, my dreams are stuck in high school or college, or in an alternative world where I don't have a family.  But last night, I had a dream about Janey, one of the very, very few dreams I've had where she was "normal".  The dream was also set in the right now, another rarity.  She was talking to me like any other 9 year old would, telling me about her day of school, asking for various toys, laughing and joking with Freddy.  I was watching her in amazement, debating if I should call a new IEP meeting to tell everyone that she was "cured", that she can stay at her current school.  But even in the world of dream logic, I had my doubts.  I thought "Well, this is today, but tomorrow, she could regress back to how she was.  Probably better to just leave things as they are, and see what happens."

I know why I had the dream, of course.  Janey had about a 2 week good mood stretch, where she was happy most of the time, talking a little more (but nothing like the dream), not crying or screaming much.  It seems to be ending---she screamed a lot last night.  And I got the IEP to sign yesterday.  I am going to read it over carefully, of course, but the handwriting is on the wall.  She is changing placements, to a "substantially separate classroom"  And I am probably 95% sure that is the right decision.  But still, every day when I drop her off at school, I feel like crying, and sometimes do.  I tell myself that part of that is just that I don't like changes.  But it's not just that.  I love her school.  I love the people, the layout, the philosophy. There is a small part of me that feels bitter, although that is a useless and probably misplaced emotion.  But I still feel it a bit, if I am honest with myself, thinking "It's an INCLUSION school!  Whey can't they find a way to include Janey?" I know that they tried, very, very hard.  I know that Janey deserves a chance to prove what she can do in a classroom aimed at helping children just like herself.  I know all that.  But in my dream, I guess I was looking for the loophole.

We live in reality.  Maybe that's why even in dreams, I don't often let myself alter the here and now.  It's too hard to wake up from.  But also, it's not useful.  Janey is who she is.  I love her as she is.  That other Janey, that Janey in the dream, is not my Janey.  That Janey is not hiding someplace inside my Janey.  She is a dream character, and like the other dreams I had last night (just how do I think of these things---having to take a walking detour through a mall on my way home in a car, and that was bad because I was hurrying home as I'd promised a friend's husband I'd act as a shrill for his maple syrup booth at a a fair), it is just the mind for its own reasons making stories up in the night.  I kind of wish my mind would just stick to reliving endlessly the dramas of high school and college that seemed so important then.

Reading to Janey

I didn't have a lot of preconceived dreams about what being a mother would be like before having kids, but I had one very strong one!  I dreamt of reading to my kids.  I had all kinds of fantasies about how we'd pick out a huge pile of library books and read them all, and go back the next day and get more, and how I'd have to negotiate about how many bedtime stories I'd read, all the while being secretly thrilled they wanted more than there was time to read.  Well---like most parenting fantasies, this one never came to pass.  I read a fair amount to the boys, but it was never as big a part of their lives as I'd wished, and neither of them read much for pleasure.  And Janey---reading to Janey---well, it's different than what I pictured.  But I'm starting to realize it still can be a great way for us to connect.

The first thing that has to happen with Janey and reading is that she has to love the book.  It's very hard to figure out what books she is going to love.  Her choices seem pretty random to me---a Wo Wo Wubsey book about tails?  A book about a dog encountering different sounds?  A random clothes catalog?  I can pick out a book I'm sure is going to be something she'd like, and she firmly closes it the minute I open it.  I have to go with what she likes, for whatever reason.  Right now, the book she's picked is a book of nursery rhymes, with very simple versions of the rhymes and with embossed pages.  (here is is, if you are interested)

Once we have the book, there's the reading.  But it's never a straightforward, read from beginning to end, read all the words reading.  Instead, after I read a few words, Janey grabs the book and closes it.  Then, if she really likes the book, she re-opens it, finds the part she likes and hands it back to me, saying something like "Humpty Dumpty!" which means I am to re-read that part.  I do, and often she points to it again.  I read it again.  This can go on for 10 or 15 rounds.  After a while, before I go insane, I quickly sneak in another rhyme.  That usually causes the book to get grabbed and shut.  But then, sometimes, when she reopens it, it's to request the rhyme I snuck in.  It has to be her idea.  And so we go on, sometimes for a long time.  We might only read 4 or 5 of the rhymes total, but we read the heck out of the ones she likes, and she is delighted.  She loves hearing them, and doesn't get bored.

I used to get very frustrated by this type of reading.  I felt like all we were doing was sort of a form of echolalia via my reading---I was doing the echolalia for Janey.  But I've tried to get a new attitude about reading.  The point, with Janey, isn't really to read a book.  It's to interact, and when we do our reading routine, we are interacting.  Janey is communicating what she wants to hear, I am spending time with her doing something we both enjoy, she is very possibly connecting the words I often put my finger under as I read with the sounds---she might be learning to read.  And she is happy.  She is getting joy out of a book, and isn't that the point?  I have had to adjust my thinking about books quite a bit.  Books can be like toys, and in fact Janey is much more likely to interact with a book than with a traditional toy.  Wasn't that my dream, in a way?

My mental list of dreams for Janey is not long.  I hope she is happy in life, and safe, and loved.  But I will admit in that list is a strong hope she will learn to read well enough to read on her own, to enjoy reading.  She can read a little---we have seen that despite what I think is her desire for us to not know she can.  But if I ever see her sit down with a book and read it to herself, well, that will be a top ten lifetime moment for sure.

Why, why, why, why, why?

That is what I have been asking myself about Janey's crying and screaming, constantly.  There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out.  But with Janey, the best I can do is guesses.  I reckon to say it's probably the best anyone could do.  Here are some of my guesses...

Guess One--- Janey is bothered by the holiday change of routines.  She is especially bothered by an inconsistent schedule.  She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend.  During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day.  School was supposed to be tomorrow, but it's already been cancelled due to the coming storm.  There is no explaining all that to Janey.  On top of that, William is home, for winter break from college.  I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times.  And now he's back, but in her eyes, who knows for how long?  I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance.  Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).  

Guess Two---  Janey hurts in some way she can't explain to us.  I don't think that is the case, but it's possible.  When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect.  She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing.  She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain.  She gets sick less than anyone I know---almost never.  I don't think it's pain.

Guess Three---  Bad dreams.  Janey is not sleeping well at all.  She seems to be resisting sleep, and not sleeping deeply at all.  I wonder if she is having bad dreams, which are making her scared to sleep.  I am a vivid dreamer, as are her brothers.  I can't imagine how scary it would be to have a bad dream and not understand it's just a dream.  I've had dreams as young as Janey and younger that still scare me to think about.  I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real.  But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.

Guess Four--- Winter.  Janey loves to be outside.  But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer.  Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back.  We are going to look at special swimming lessons, but even that will only be something like an hour a week at most.  The house closes in on all of us in the winter, and I am sure that affects Janey.

Guess Five--- Frustration with her limitations.  I have no way of knowing how much Janey understands about herself.  I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that.  She showed recently that she can read at least some, and I do truly feel she has untapped potential.  That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.

Guess Six--- No Reason.  That is sometimes my leading guess.  I don't know if there is any reason at all for Janey's screaming and crying.  Or I should say, any reason that is controllable.  Her bad spells, and indeed her good spells, seem pretty random sometimes.  They come in, last from two to six weeks or so, and go away.  I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either.  This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do.  Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes.  If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously.  And there are no guarantees it would help.

And so we are left with guessing, and hoping.  There isn't anything else we can do.  I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much.  I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in.  The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way.  So we just keep on keeping on.  We don't have a choice, frankly.  And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children.  That is how we do it, when people ask how we do it.

Dreaming Small

I don't dream much about Janey.  I don't dream much about my kids at all, or my current life, although I dream all night every night.  In my dreams, I've gone to high school and college about a thousand times over, sometimes vaguely aware that I am redoing an experience.  But the last 20 years of my life are barely there in my dream world---I have no idea why.  Last night, though, I had a dream about Janey, and it struck me in how mildly it changed reality.  I am dreaming small lately.

In the dream, I took Janey to a very upscale kids clothing store.  I wanted to get her some fancy clothes for a party.  I held her hand constantly, as I would do in real life, and we looked at the rather meager selections the store had.  I noticed there was an upstairs, and so we went up there.  It was in the form of a loft, completely open to the downstairs with no railing or anything, but that didn't seem to bother me.  I found some promising looking clothes, and Janey found a dollhouse and some play teacups.  There was a slightly older girl there who started playing with Janey, and so I let my guard down.  So much so that when somehow my parents showed up and needed me to walk about a block away to help them with something, I just left Janey there.  When I got back, she was fine, but all dirty and without her shoes.  She said to me "We went out to play in a meadow"  Even in the dream, I realized that was a pretty great sentence from her, and praised her for it.  And that was it, except for a long drawn out part of looking for her shoes and the nasty shopkeeper being annoyed I had lost them.

And I wonder---why don't I go all out in dreams?  Why isn't Janey talking fluently, not autistic at all?  The Janey in this dream was mostly the real Janey, just a better talker, and even then, the dream world knew that was an unusually good utterance.  Of course, there's no answer to those questions.  Nobody understands dreams.  But if there was a meaning, I'd say it was one of acceptance.  Janey isn't going to change drastically.  The little changes are what I hope for now, the little triumphs.  They make me happy.  Her autism is a basic part of her, even in my dreams.

What we're gonna be

There's a line in one of my favorite songs by one of my favorite singers, Don Williams, that says "I guess we're all gonna be what we're gonna be"  It sounds like a simple statement, but as time goes by, it strikes me as one of the most powerful and true statements out there, especially when it comes to raising kids.  Your kids are who they are.  They are going to be who they are going to be.  We can ease the path for them, we can help them adapt who they are to this cold world, we can teach them coping techniques and give them ideas and help, financial and emotional, we can give them a soft place to land, but we aren't going to change who they are.  

This was brought home to me in a very good way yesterday, when William stopped me just before I left to pick up Janey and showed me the certificate he received at school, stating he was going to be the valedictorian of his high school class.  To say I was proud is to put it as mildly as it can be put.  I was out of my mind proud, in tears proud, overwhelmed with emotion proud.  And my mind did one of those things that usually only happen in movies.  It did a sweep back on William's life.  I saw him as a premature baby, a quirky little fellow, a kid who had trouble adjusting to school, a kid that took some time to find his place in the world.  Then I saw him in high school---working until 2 am on homework, often, striving for excellence every single second.  And I saw---it was all him.  I had very, very little to do with it.  He did the work.  I can honestly say I never once helped him with homework after about 2nd grade.  Once Janey was born, a bit after that, in some ways, he raised himself.  We gave him a bed, food, love, but we in no way directed his schoolwork or insisted on him working.  Instead, we often begged him to take breaks, to not knock himself out quite so much.  But he had his own goals, his own personality, and that is what makes me so proud---that he set his own agenda, made his own dream and then followed it.

When it comes to Janey, it's harder to let myself believe that she will do the same, but I do, in a deep part of me, believe that she will.  It's unlikely she will do it in the way William did, but she has things that drive her, just like William does.  When she wants to know how to do something, she figures it out.  I watch her sometimes now with her hands dancing over the iPad, or picking the exact episode she wants on Netflix, or finding all the ingredients to the dish she wants Tony to fix, or finding a way to ask me for the song she wants to hear.  None of those things came easily to her, but she had goals, even if she didn't think of them that way.  She wants to control her world, her activities, what she hears and sees and does, as much as anyone does.  We by necessity have to hold her back, often.  We can't let her use the stove, as I think she longs to, we can't let her go outside and explore in the freezing cold, we have to cut off her TV viewing at  times.  But she is showing us her way, and like with William, I think a lot of parenting is stepping out of the way as much as is safe and healthy and possible, and letting her work toward what drives her.  The autism makes this tricky.  I think of it as a handicap, not in the old way of handicapped kids, but in the way of a race horse or a golf player---something that she has to work against.  This might not be totally politically correct to think---I think I'm supposed to see it as a part of her, but I don't, always.  I see it as part of her own individual path, something she must work around.  It's a lot bigger than what most of us are given to work around, and in the end, it will limit what she can do.  There's no getting around that.  But it won't stop her from becoming, as much as she can, who she is.

I am proud of all three of my children.  They have different abilities, different goals, different needs, but that is what makes life interesting.  They are all gonna be what they're gonna be.

Dream Alert!

The dream alert is for a certain friend of mine, who will remain nameless, who often reads my blog and doesn't like to hear dreams.  Okay, you know who, stop reading right now!  And for anyone else who might share her odd dislike of hearing other people's dreams, stop now too!  But blogs are nothing if not self-indulgent, so I'll go on and tell anyone who is still listening about the dream I had last night.

In the dream, Janey was attending some kind of early intervention.  She was younger than she is now, but not under 3, which is the age for real life EI.  The program was held on a sledding hill.  There was a place for parents in a little lodge above the hill, with lots of windows so you could look out and see your kids.  Some of the parents were on the slope with the kids and some were in the lodge room.  I got Janey suited up for sledding (in some high top sneakers, for some reason) and held her hand, ready to take her sledding with the parents that were with their kids.  Then one of the EI workers stopped me and said in a fake cheerful voice "I'll take Janey.  You just relax and sit there and talk with the mothers.  She'll do fine, won't she, Janey?" I knew she was saying this because she thought I was overprotective and that Janey would do better without me.  I didn't agree, but being the type that doesn't like to argue, I let her take Janey and went up to the lodge.  We all got talking and I was feeling pretty relaxed, when all of a sudden, Janey walks into the lodge.  She is holding a hack saw.  I grab the saw.  I'm filled with fury.  I ask the other mothers to watch Janey and run down to talk to the EI workers.  I scream at them "You thought I was so overprotective, but you don't understand Janey!   You can't take your eyes off her for a SECOND!  You weren't watching her! No-one saw she had a saw, no-one noticed she had left the hill and come up to the lodge, no-one was WATCHING HER!"  I was hysterical.  They talked to me in "calm this crazy lady down" voices, and I demanded to talk to the woman in charge.  She was really something---acting like I was being totally unreasonable and crazy and silly.  It never came up to ask why a hack saw was lying around where little kids were playing---you know how dreams are.  I wound up going back up, getting Janey, and telling all the other mothers how horrible the program was, and storming out.  The dream was dramatic enough that I was screaming out loud in my sleep---sleep talking being something I do a lot of.  Tony knew to ask me what upsetting dream I had when I woke up.

Dreams often don't mean much, but I'm trying anyway to figure this one out.  It isn't much like my real life----Janey is watched very well at school, and I have never once seen a hack saw lying around there.  And I don't scream like that at people.  I probably wouldn't even do that in the dream situation, although I'd be justified doing so, I think.  If this dream has a meaning, it might a reflection of my fears for the future, my fear of Janey some day being in a situation where she isn't understood and where what I know about her as a parent isn't acknowledged.  It might have been triggered by my reading of the "Far From the Tree" book, and hearing about how it can be hard for parents when their kids become adults, and where any kind of letting go and having a life outside of the child is fraught with danger for the child.  Maybe I was preparing myself for fights I might some day have to fight.  Who knows?  I woke up upset and shaky.  And glad that dreams, for now, are not reality.

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.

Over the American Girl Catalog

I never really dreamed of having a girl for a lot of the reasons I've heard of.  I'm not terribly into frilly clothes, I certainly am not into pageants, I almost never wear makeup or paint my fingernails or buy new clothes.  I never had a dream of a big wedding, or ballet classes, or Disney Princesses.  But I did have one big dream for a girl I might someday have.  I had a dream of getting her an American Girl doll.

Of course, there weren't American Girl dolls when I was little, but there were sure dolls.  And that was one part of being a girl I embraced heartily.  My sister Carrie and I had lots of dolls, and lots of doll clothes.  We each had a doll family, and we played dolls often.  We added a lot of twists to it---our dolls had a rare genetic disease that one after one they were tragically diagnosed with---Ingalls Syndrome.  It was named I think in honor of Laura Ingalls Wilder, although it had nothing to do with her.  It resulted in the dolls being, well, doll-like, floppy and unable to walk on their own.  Despite their challenges, our dolls lived full lives of going to school and visiting their cousins, all of which required a lot of changes of clothes and elaborate setups.  When I was even younger, I had a favorite doll named Janie, after my aunt.  You might guess where Janey got her name---after the aunt and my doll.  Dolls were a huge part of my life.

And then, pretty much as I entered adulthood, there came the American Girl dolls.  The first time I saw a catalog, I knew that someday, I would have a little girl and she would sit with me, looking at said catalog, and we would decide what girl would be hers.  We would order it, and then every Christmas and birthday, we would get a few more of the clothes and accessories.  Maybe, we would get a second doll at some point, so they could be friends.  It would be a wonderful mother-daughter bonding time.  Each new catalog would thrill us.  The doll would be almost like one of the family.

And then, I had two boys.  They are wonderful kids, but despite me trying, they never got into dolls.  Believe, I tried more than most people thought was normal, but they were not doll lovers.  The moment the nurse told me on the phone that child #3 was going to be a girl, I screamed, called Tony and started thinking about the American Girl catalog.  Sick, yes, but I am admitting it here.

You know a lot of the rest of the story.  When Janey was three, old enough to be the age that was supposed to be ready for American Girls, to not choke on all the adorable little accessories, she was diagnosed as autistic. I still of course had my doll plans.  But I put them aside, and realized they were pretty unimportant. That they always had been unimportant, a dream of mine and not of Janey's.  I did get her dolls, of course, and I tried mightily to interest her in them, without success.  She didn't, and doesn't, play imaginatively.  She liked tossing the dolls around sometimes (much like her brothers had), but not certainly sitting them down at their expensive little tables and feeding them their expensive pretend picnic lunches or loading their expensive backpacks with expensive adorable tiny school supplies.  

The American Girl Dolls catalogs kept arriving, of course, and I kept looking.  In most ways, I think I've been fairly good at accepting Janey as she is, but in that one little way, I kept dreaming of a Janey that wasn't.

So it shocked me a bit yesterday when the big Christmas American Girl catalog arrived.  I waited until Janey was asleep to look at it.  And I realized, quite quickly, I was over it.  I no longer cared a thing about it, or about Janey not being the girls in it, playing with their dolls.  In fact, the girls looked annoying to me.  Didn't they have anything better to do in life than pose their dolls?  Were their parents so full of money and stupid as to shell out big bucks for tiny little doll shoes or miniature pastries or Julie's new VW?  Why did all the girl models look so cookie-cutter---diverse on the surface, but all neurotypical?  And why was the American Girl world so phony?  Why did even historical girls have modern aspirations?  Why is every doll and girl thin and perfectly groomed and able to afford vast numbers of accessories?  Why are they all into sports and fair play and friends?  Why are none of them shy, or awkward, or preferring to sit and read over getting out there and having exciting yet safe adventures?  Why are none of them autistic?

I realized I no longer long for that world, which I guess has always been more than just a doll thing.  I don't long for that life, the life of the perfect American Girl, or American girl in lower case, the dream we are supposed to dream of.  I still wish life was much easier for Janey.  I wish she wasn't autistic, because that is a hard life for her.  But I don't wish any more, not at all, for the girl that would want an American Girl.  I'm over that.  I have the girl I have, and she is just as much an American girl as any of them.  More so than the plastic, accessory rich, expensive version, because she is real.

Dreams of Janey at 30

When I was around 10, I was fascinated with the idea of being 30.  It seemed like it would be a magical age, when all the college and early adulthood would be paying off and I'd be living my real life.  I even wrote a letter to myself at 30, asking what was up with me---was I married?  Did I have kids?  Where did I live?  Was I happy?  Now of course at the ripe old age of 46, 30 sounds pretty young and far away, but I was thinking about that obsession the other day, and got thinking about what life will be like for Janey when she is 30.  My daydreaming took me to several futures for her.

First was the outright anything goes dreaming, where reality does not interfere.  In that kind of dream, Janey somehow wakes up "cured" of autism, completely "normal".  She catches up in school and goes ahead of everyone.  She goes to some exclusive college, gets a high level degree, meets some handsome, rich and kind man, gets married and has beautiful grandchildren for me, who I babysit while she works part-time at a very high paying job.  She buys me a house with an indoor pool.  The world beats a door to our path to figure out how Janey overcame her autism, and we co-write a bestseller about that.  It's a fairytale life.

Then I jolt myself back to reality and think about what kind of actually rooted in real life future I'd dream about for Janey at 30.  In that future, Janey lives with Tony and me.  We are healthy enough to care for her well.  She goes to a high quality day program, where she has interesting experiences and maybe does some kind of sheltered work.  She has her own hobbies and interests, which she pursues in the evenings and weekends.  Several times a year, she goes to a respite home, so Tony and I can vacation or just rest.  She sees this as a vacation too, and it's the same place that someday, when Tony and I can no longer care for her, she will live.  She is happy, as happy as anyone else is, and maybe a little more so, because she has less responsibilities and things to worry about than the rest of us.

And of course, sometimes I start to have the future visions that are nightmares.  Tony and I are gone, or too sick to care for Janey.  She is living in a horrible situation, where she is not well cared for.  She has regressed, doesn't talk, cries all day.  She is too heavily medicated.  She spends her days watching videos over and over and over on a TV that doesn't even come in well.  I close down those visions quickly.  They are too hard to think about.

I tell myself not to borrow trouble.  Janey is only 8.  It's a long time until she'll be an adult.  But time goes quickly.  William is 18 now, and I have no idea how that happened.  Before you have kids, you think people overstate how fast times goes by, but once you have them, you realize they understate it.  It couldn't be more than a few years ago I first saw my tiny preemie William.  But here he is, a senior applying to colleges.  And I know that time will do that trick again, and Janey will be an adult.  And barring the kind of miracle my first dream illustrates, we won't be sending her off with our best wishes.  We'll be caring for her, and depending on a society that might or might not be prepared to provide help to Janey and the many others like her, the autistic people that are no longer cute little kids.  It's yet to be seen if that will be a dream or nightmare.

The dream

I'm a hard core dreamer---I have dreams every night that I remember. But I don't write about them much, having learned that most people aren't really interested in hearing other people's dreams! Also, for whatever reason, I rarely dream about my kids. It always confuses me as to why, but in my dreams it's usually high school or college or some undefined place or time. Last night, however, I had a dream about Janey, and it has me thinking.

In the dream, I was taking Janey to visit a college. Janey was her same age as now, six. The college was an engineering one. Janey was as she really is, autistic. I had an interview with the president of the college, a woman that while being very polite, let me know that it was quite unusual to take a six year old with autism to seriously visit an exclusive college. I had the boys with me, and she pointedly asked why I wasn't taking THEM to the college, which would make a lot more sense. I had an answer ready for her. I said it was vitally important to have a concrete goal for Janey, so I could make everything I did with her work toward that goal, and my goal was for her to go to college to be an engineer.

I wonder what, if any, meaning the dream had. I don't think Janey will ever go to college. I am not working on that as a goal. But do I need a goal for Janey, a vision of what I want for her, for her future? I don't think that way, usually. I don't have goals for the boys, besides kind of vague ones that they be self-supporting and give me some grandchildren maybe, but I trust them to make their own goals. Janey isn't likely to do that.

So what are my goals, if I were to make some? Well, I'd like her to learn to read. That's a big one for me. I'd like her to learn enough self-help skills that she take basic care of herself, whether she someday lives in a group home or on her own or, most likely, with us. I'd like her to learn to talk well enough to clearly tell us how her life is going, so I won't worry constantly about what happens when she isn't with us. I'd like her to have an interest that makes her happy, whatever that might be---swimming, music, books, art, knitting, collecting some knick-knacks, whatever. And how can I work on those goals? I guess---keep trying to teach pre-reading skills. Keep working on things like dressing and meals (those are her stronger points, which is nice). Work on giving her the words to tell us about her life. Encourage the things she shows an interest in.

But is that what the dream meant? I don't know if dreams are just random, but this one felt like it meant SOMETHING. Maybe a reminder that she is only six, and I don't need to worry about her in the future at a college age right now? Maybe that I should be focusing more on goals for the boys? Maybe (I'm daytime dreaming here) that she has some hidden abilities and some day WILL go to college)? Who knows?

I promise---no more dream blog entries for a year or so!