Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!

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.

Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

On Awareness/Acceptance/Whatever

Other years, I've tried to write a post about Autism Awareness/Acceptance Day/Month.  This year, I wasn't going to.  This is partly because the whole idea of an autism day or month seems to be very controversial, and I am not much into controversy.  For those who might not get why it would be controversial---from what I understand, Autism Awareness Month and the whole Light It Up Blue campaign was a brainchild of Autism Speaks.  Autism Speaks is not a well-liked organization with autism circles.  There's a variety of reasons, the big ones being that they portray autism very negatively often, and that they give very, very little money to actual help those with autism---most all their money goes to administration or to research.  They also haven't been too interested in having people with autism on their boards.  I would tend to feel these are pretty valid criticisms.  However, I know that most people who do things for autism awareness, like wearing blue or putting up blue lights, have no idea what the history behind it is.  I believe in taking gestures in the spirit in which they are given, and so I don't get that upset over all of it.

However, the other reason I'm not trying to write an autism awareness/acceptance post is that I more and more realize I am not aware of autism in general. Very few people are.  I am aware of one child, Janey, with autism.  And autism is only a part of her.  I can't take anything about her and generalize it to the larger autism world.  She is herself.  I can and do and will write about her, my daughter, and the joys and struggles involved in raising her, and I am happy if that helps others raising children with autism and if it helps others better understand what it's like, in my particular case, to raise a child with special needs.

Several times lately, I've seen writing about how in many ways, there truly is more awareness of autism than there was in the past.  I've noticed this.  When Janey breaks down in public, or when she doesn't answer someone who talks to her, or when she shows her unusual behaviors, I often am quick to say "She is autistic"  I do this partly to fend off those who might think she is misbehaving, and partly to do my own little part for awareness.  More and more, though, I get the response "Oh, I knew she was".  People are more aware than I'd say they were even five years ago of what autism can sometimes look like.

My hope is that there is a progression with issues like autism.  First, people become aware of it.  Then, they are open to helping with it, and open to government and schools and cities spending money to help people with autism.  You need to be aware of what is needed before you can understand why you need to give that help.  That is part of why I write here.  It's easier a lot of times to relate to one particular child than to a concept in the abstract.  I want to do my small part to make people aware of one child with autism.  I don't speak for anyone but Janey and our family, but in telling our story, if people become more aware of autism in general, I consider it a plus.

How did we spend our special autism day?  We had a good, quiet day.  Janey was quite happy all day (and all weekend).  She watched videos, played with her iPad, ate a lot and danced to music.  We took a couple car rides, including a long one to Dairy Queen (the closest one to us is a ways away) and she had chicken and french fries while we rocked to her car music.  There was of course a bit of screaming here and there, a little bit of arm biting, but a lot of happiness and laughter, too.  Janey, you have made me aware of autism.  You have led me to accept autism.  And I love you.

The first week of school

Janey has finished her first week of school, and so far, pretty much so good.  The start of school is almost always a good time for her.  She has a honeymoon period every year, where I am sure her teachers think "This is the girl I've heard so much about?  She's a piece of cake!"  Things often start collapsing around mid-October.  I feel like I'm being negative to say these things, but the pattern is pretty unmistakable.  But we do enjoy these early weeks!

The bus comes around early, around 6:30.  Janey's sleep hasn't been perfect.  Last night and 2 nights ago, she woke at 3, never to go back to sleep.  It is amazing how she never seems bothered by that lack of sleep, whereas Tony and I are very much bothered by it.  She seems to wake in the same mood she went to sleep in, and she's been cheerful lately, so she wakes up cheerful and ready to start the day, oblivious to the fact it's dark out and her parents seem oddly unresponsive.

Janey's school runs a little longer this year than last, as they have added 40 minutes to the school day.  She get home on the bus around 3.  So far, she's hopped off the bus in a good mood, which is always nice.  Her first act after getting home is to fling herself on her bed, and the next is to take off her shoes and socks.  Then, she eats.  She eats and eats and eats.  She gets school breakfast and lunch, but she doesn't much like them.  We've tried sending in food, but she never eats that either, and in Boston, school food is free, so we figure she might as not eat free food as paid for food.  But she gets home hungry.  It's amazing how much that girl can put away and still stay slim.  She's gained back the weight she lost being in the hospital, but she's still quite slender, despite eating like a sailor.

The one problem so far this year was a report on Friday that she had hit the bus monitor the day before.  We think the issue was that they put her in a seat next to another kid, not by the window.  Janey loves almost any length of car or bus time, as long as it keeps moving and she can look out the window.  It's a testament to what you can get accustomed to that we didn't get really that upset about the hitting report.  I don't want her hitting anyone, but we have learned as the years go by there isn't a lot we can do to stop it.  We of course tell her over and over that she can't hit people, and she can recite that back with a voice that sounds sincere, but when the urge hits her, she hits.  The best we could do was to tell the bus people that a window seat would be best, and they listened and are now putting her by the window.  I think everyone learns after a while with Janey that it's often a lot easier to modify her surroundings than her behavior.  I feel like this summer, we finally really learned that lesson ourselves.

Janey doesn't tend to learn anything academic at school.  I have pretty much accepted that.  It's not for lack of trying, and of course, who knows what she is picking up and not showing that she is?  If she is happy at school, the truth is I honestly don't care if she learns academics.  What I do care is if she is frustrated trying to learn things she just can't learn.  I have more doubts about ABA all the time, in Janey's particular case.   I don't think it's worked for her, in just looking at what programs she was being taught at the age of 4 and now at 11.  They aren't much different.  She is not motivated by ABA, or by any rewards she is given by it.  If she wants to know how to do something, she learns it near instantly.  I showed her only once or twice how to push the "3" on the TV remote to get it on the right channel for videos.  She shows no sign of knowing which numeral is which under normal circumstances, but boy, does she know that 3.  She knows which song is on which CD in the car, and what order they are in, and the lyrics and tune for every song, I truly think, that she has ever heard.  Those are the things she cares about.  I wish I could make her care about learning to read, or, as I sometimes suspect, make her show that she already CAN read, but, and I am seeing a theme here, you can't make Janey do a lot she doesn't want to do.

So, another school year has started.  It's strange, with Janey the only child home, but otherwise, it feels pretty familiar.  My main hope for the year is no hospitalizations of any kind---that Janey can attend school all year without interruption.  I think that's a reasonable goal.  As the years go by, we become more rooted in reality.  Acceptance isn't just a catch word, it's the only real way to stay sane, I think.  We accept that Janey is who she is.  We try to respect who she is, and work with who she is.  Like with any child, we rejoice in parts of her personality and despair of others.  Trying to change a child, a person, any child, any person, is an exercise in futility.  That's the biggest piece of knowledge being a parent of three very different, very intense, and very cool kids has taught me.  Work with what you have, and love them as they are.

Fictional Moments in Autism Parenting

Before I became a real, live parent of an autistic child, I used to read a lot of books about children with autism.  They formed kind of a sub-genre of parenting books, and I found them compelling.  It's a lot harder to read them now, although I sometimes try.  What makes it hard is that those books all seem to contain some elements that are sorely lacking in my life.  Here's a few of those moments (of course overstated and with fictional therapies, but indulge me!)

The Doctor Denial Moment

"Although little Florence was slipping every day more deeply into the abyss of autism, when we took her to our trusted pediatrician, he patted her on the head and said 'She is just fine!  Every child develops at their own rate!  You are over-anxious parents!'  It took thirty-one more visits to doctors, specialists and finally calling in some favors for her to be seen by the world's most celebrated autism guru for her to finally be diagnosed"

Janey's autism, when it hit, was apparent to strangers on the street.  No-one ever called me an over-anxious parent, although I would have loved to be called such.  She was diagnosed as soon as we asked for her to be evaluated.  There was no question.

The Immediately Choosing a Therapy and Having the Money to Pay For It Moment

"As soon as Florence was diagnosed, we did some research and decided the Colpepper-Smythe Regiment was the therapy that would be her savior.  Although it cost two million dollars a year, and required flying in therapists every week from Albania, and completely remodeling our house, we had faith it was all worth it.  I must admit it was a little bit of a financial stretch.  We had to forego our yearly upgrade to the latest diamond-studded car, but that is how much we cared"

When Janey was diagnosed, we let the school she was already attending know, asked for an IEP meeting, and when it was held, agreed to the very reasonable course of therapy they recommended.  We didn't seek outside therapy, because all of us were selfish and enjoyed eating too much to absorb the financial stretch of giving up food that outside therapy would have required.

The Breakthrough Moment

"After two years of around the clock therapy, without the slightest sign of progress, suddenly there came an amazing moment.  Florence looked at us, said with a smile 'I'm all done being autistic now!', read 'War and Peace' aloud to us and went to the computer and applied for extremely early entry to Harvard, all at the age of four.  It was then that we knew our faith and devotion had been rewarded"

Janey has yet to have a breakthrough moment.  She has lots of amazing little moments, and we love them, but none of them have "cured" her.  In fact, in many ways, she's very similar to how she was at age three, when first diagnosed.

The Passing for Normal Moment

"We decided to put off Harvard for a few years, to give little Florence a chance to enjoy a normal childhood.  We enrolled her in the local pricey fancy private school for completely normal kids, and we knew it was working when her teacher, who we had never told the sordid secret of Florence's early brush with autism,  called us and said 'Of all the normal kids in Florence's class, she's the most normal of all.  I'm saying this to you for no reason in particular, but she would never be mistaken for a child with autism, not THAT super normal girl' "

Janey is not going to have a moment like that.  I am not selling her short to say that.  I no longer preface remarks like that with saying "short of a miracle".  Janey is autistic.  She is going to stay autistic.  That is the reality of her life and our life, and I am gradually starting to feel that hoping someday she will be "cured", she will be "normal" is like hoping some day she will no longer be Janey, and Janey is here to stay, and I love her.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

"They grow up so fast!"...or not

William has been at college for a week now.  I miss him more than I even thought I would.  It's a strange feeling to have someone you love around every single day for almost 19 years, and then, suddenly, they are gone, and it feels like, well, that's that.  I know he'll be home for vacations and summers, hopefully, but he is the opposite of homesick.  He loves college extremely much, based on the few lines I've heard from him.  And I am very, very glad.  That is how it should be.  Tonight, though, I was feeling sappy and thinking things like "it's so true what they say---they grow up so fast!"  I was thinking of posting something like that for my status on Facebook.  But then I thought about it.  They don't all grow up so fast.

Janey is growing physically, of course.  She is getting older.  She will be a teenager in 4 short years.  But she grows in other ways very, very slowly.  Many things seem at a standstill often.  Her toilet training is improving, but over years, not months or days.  Her speech in many ways ebbs and flows, but doesn't really get better.  She can do things she couldn't a few years ago, but still, in many ways, she's a toddler mentally and developmentally.

Tonight when Janey was crying, I got her to sit on my lap.  I sang to her, smoothed down her hair, snuggled her.  It felt a lot like what you do with a baby.  It was wonderful.  It was a rare time I was almost glad I still have a little, little one.  That feels like the wrong thing to think.  It's of course not that I don't want her to mature.  If she was breaking away from me, if she was starting the road to someday being like William, gone away and glad to be so, I would be thrilled, because that is how the pattern of life goes, usually.  But I don't have a choice about it, and sometimes, with accepting that comes a kind of peace, a kind of happiness that in many ways, I have a child who will most likely be a child forever.

There are many of us out there, I realize more each year.  There are a lot of parents who have a child for life.  They watch other kids breaking away, growing up, moving out, getting married, having grandchildren for them.  They often have other kids doing just those things.  They watch with a mixture of feelings.  There is jealousy, yes.  I think most of us would admit to some of that.  There is envy, and there is astonishment, that for so many children, becoming an adult happens so easily, seemingly without effort.  But there also comes, with time, a feeling that we are living a separate but not inferior type of life.  Our kids are not on the same tenure track.  They are living a parallel life path, one that doesn't have a childhood expiration date.  And over the years, slowly, that becomes its own reality.  I am not there yet.  I still wish, sometimes, or maybe a lot of times, that Janey was following the more typical path.  But tonight, as I miss my oldest, I treasure my youngest, and I am glad, for flashes of moments, that she does not grow up so fast.