It has gotten easier, but it never ends

When things were toughest with Janey, when it seemed almost impossible to go on, I hung onto the words of friends I'd met through this blog, mothers with older girls with autism, who told me it would get easier.  I had my doubts, but I trusted them to tell me the truth, and they did.  It does get easier.  If I could go back about 4 years in time and tell myself how things are now, I'd hardly believe myself.

It gets easier, but I have to admit something.  Even easier, it's tough.  

Me

It's tough because it's forever.  

Of course, everyone's children are their children forever, no matter how old they get or where they go or what they do.  My boys are home from college as of last night, and they are still my babies.  But in so many ways, my relationship with them is very different than my relationship with Janey.

Janey requires full time care.  She must be supervised, always.  It is not safe to ever have her alone.  That will not change, ever.

Every day of Janey's life, even the smoothest days, we are on alert for her to melt down, to scream, to bite herself, to possibly lash out, to fall apart.  We are never fully relaxed.

Janey needs help with all aspects of self care---dressing, feeding, cleaning herself, toileting---everything.  Large parts of every day are spent taking care of her, at about the level you'd spend taking care of a typical toddler.

Janey's need for routine and for control makes it so when she's home, which is most any time she's not at school, we are not able to listen to music that isn't hers, watch TV that's not what she wants to watch, even just sit casually if we are not sitting the way she wants (without any crossed legs or any crossed body parts at all).  Our acceptance of her needs in this way is a huge part of why life today is easier than it was in the past.  It's a worthy bargain, but it's also a huge limitations on daily life.

Janey's limited speech makes it so we often are guessing what she wants.  We struggle all the time to find a way to let her tell us her needs and to communicate to her what we need from her.  Something as simple as picking a TV show to watch is a minefield of potential misunderstandings and resulting tantrums.

For those reasons and many more, it's tough.  And it's forever.

I've been having a hard time emotionally lately.  I think I'm at the point in my life where I'm thinking "What about me?"  That feels selfish.  And being a mother is absolutely the most important and meaningful thing I've ever done and will ever do.  But sometimes, I think about being at or past the middle of my life,  and how restricted my life sometimes feels.  That isn't all because of Janey, of course.  I'm not exactly a go-getter.  I don't like to drive, I'm a bit of a loner, I have low energy partly by nature and partly as a result of several fairly severe medical conditions I have.  But when I try to think of ways to expand my life, well, there is a large roadblock to almost anything I might try to do.

In the early years of having a child with autism, there is a drive to figure out the child's potential, a possibility of great changes to come.  As the years go by, there comes a point when things slow down, when we realize that there is no miracle cure coming.  It's a good point, in many ways.  It's a point where we can do what Tony and I did a few years back---change our ways of thinking and operating to give Janey the best and most stress-free life we could, so that life was and is easier for all of us.  But it's also a point of realization that this is for good, this is our life and her life.

I have tried over the years to end every blog entry with some kind of hope or positive message.  That is still what I want to do.  I want everyone to know the value of a life like Janey's, how she is important and amazing just the way she is.  But I also want to be honest, because we as mothers are important and valuable and amazing too.  And we get tired.  We get discouraged.  We feel alone.  We sometimes feel hopeless.  We need to keep on going, and by being honest with each other about the challenges as well as the joys of raising our autistic daughters, we can help each other get to the next day and month and year.

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.

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.

The Politically Incorrect Enjoyment of Autism Parenting

I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now.  Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us.  We watch the boys moving on.  William is in college, and weeks can go by where we barely hear from him.  Freddy is a junior in high school, and busy so much of the time.  Soon he too will be in college, and then they both will be adults.  I hope we stay very close with them, always, but I realize there are no guarantees.  And that is how it should be---kids grow up.  But Janey will not be growing up in that same way.  She will become an adult, but she will always be our child.  I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case.  I've accepted that.  And sometimes, I can truly embrace the idea of a child that stays at home forever.

So what's the problem?  Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like.  One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is.  I try to do that.  I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it.  The other idea is assuming competence.  I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us.  Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.

So---I accept Janey as she is.  I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought.  However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college.  And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow.  SO---how can I feel both at once?

There are many more examples I can think of like this.  I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying.  But that is accepting that she is not going to ever understand social interactions at any kind of higher level.  I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older.  But don't I want her to mature, to be able to see me as a real, flawed person she can break away from?  I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard.  But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology?  I feel glad she will never have her heart broken due to an ended romance.  But I should be dreaming of her being able to experience that romance in the first place.

In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey.  I feel joy in the parts of her that are childlike and will remain so.  But should I feel only sorrow that she is not going to have a normal adult life?  Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her?   I don't know.  I might be just overthinking.  But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me.  I'm going to allow myself to picture what is good about having my child be a child forever.

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.