The power of what we do and don't talk about

Yesterday was our 26th wedding anniversary.  As happens on days like that, Tony and I were reflecting on our past, and especially on my pregnancy with my first child, William. 

Then in the early 90s even more than now, it seemed like pregnancy complications were something not to be talked about.  It was the heyday of "What to Expect When You're Expecting", a book that seemed determined to let you know that everything you were experiencing was just fine, perfectly normal.  There were a few small pages only about what can actually go wrong, and they were presented as something you probably didn't even need to know about, something you certainly shouldn't dwell on.  And so when my pregnancy felt different than what I read about or saw around me, I figured I was just being paranoid. 

I wasn't, and William was born at 7 months by emergency C-section because my pre-eclampsia had progressed to life-threatening levels.  It turned out, in my family anyway, that wasn't that uncommon.  On my father's side in particular, pre-eclampsia turned up often, with the strongest example being my great-grandmother, who died of eclampsia, seizures, a few days after my grandmother was born.  A few months after William's birth, the TV series ER had an episode called "Love's Labor Lost", in which a mother dies from complications of pre-eclampsia.  I wish I'd seen it sooner, although it was the hardest thing to watch I've ever seen.

A scene from ER's "Love's Labor Lost"

Of course, there are reasons we don't talk about everything in our lives publicly.  There is much in all our lives, including mine, that we don't share.  The reasons are many, and sharing or not is a choice we have a right to make, and sometimes an obligation to make.

However, at times, sharing can be life saving, or soul saving.  My life, and William's, were in the balance around the time of his birth.  I wish I had known what I know now about how suddenly and drastically pregnancy can take a turn.  And when it comes to my life with Janey---if I hadn't found the people I have, through this blog, mainly, I don't know if I would be here today.  There were days, and nights, that were only survivable by knowing that others had lived this life and gone on to a place of calm, even happiness.  And what keeps me writing today is those letters I've gotten from others with girls like Janey telling me how knowing they weren't alone kept them going.

Something I try to always keep in mind, though, is that there is much we don't know about the lives of others.  We don't always know what others are struggling with, what health issues or family issues or any other issues are affecting their lives.  There are many things we don't share, or aren't ready to share.  There are many times we are the ones depending on others who ARE ready, who DO share, whose stories we cling to as we struggle with what we ourselves are not yet, or ever, sharing.  Help comes in many forms---both in how we give and how we get help.

I want to thank those who have made me know I'm not alone, over the years---both those who shared their life experiences and those who didn't, but used them to become comforters and helpers of others.  May none of us ever feel truly alone.

Once you notice you've walked off the cliff

In cartoons, often characters walk or run off cliffs, being chased or chasing someone.  In their world, unless you look down, you don't fall---you run along nicely in the air.  It's only when you notice you've left solid ground that you fall.  I've been feeling like we've looked down, and we are no longer able to walk on the air.  We are thinking non-stop about when Janey comes home, and how we will be able to keep running now that we've noticed we are off the cliff.

I tend to wait until the last possible moment to seek help.  When I was pregnant with Janey, and taking the supposedly safe for pregnancy blood pressure medication Aldomet, it took a week of even increasing severe signs of allergy and reaction for me to finally realize I needed medical attention.  By the time I did, I had a high fever, a very low white blood cell count and a liver that was showing signs of severe distress.  That reaction, at 12 weeks into my pregnancy, is one of the prime candidates in my mind for what might have caused Janey's autism.

With Janey's increasing agitation and aggression to others and herself, I feel like I again waited too long to realize how bad the problem was becoming.  In fact, I'd probably have waited forever, had the school not pretty much insisted I take her to the hospital.  By the time we did, two weeks ago, it was highly apparent to almost everyone that there was a serious problem.

Why am I like this?  Part of it is a fear of crying wolf, of saying there's a problem beyond what there really is.  Part of it is a feeling that our children are our own responsibility, that we need to care for them on our own, without help beyond school.  And part of it is denial.  If you don't want there to be a problem, you don't seek help for it.

But now, we have looked down and seen we are in a tough position.  I don't know how long Janey will be at the Bradley hospital.  I got another of the letters today, the ones I am supposed to not worry about, saying she was approved to stay two more days, until the 27th, which is of course two days in the past.  We miss her so much, but we also see they have barely had a chance yet to really get to know her.  They have eliminated two of her medications, which hopefully will help, but nothing new has been added, and we don't know any new techniques to handle her.  When she comes home, I have no real reason to think she won't still be hurting herself and others.  And what do I do then?  I'm certainly not taking her back to Children's Hospital to start another round of waiting for a placement.  I think that would hurt her, and us, more than anything.  She could not take another period of time shut in one small room.

I am scared.  Not scared of Janey, although I don't like to have my hair pulled and my eyes gouged at and my hands bitten, but I can handle that if I need to.  I am scared FOR Janey.  I am scared of what the future holds.  Will it be an endless round of cycles of calm times and then horrible times like the past month?  Will her school still be able to handle her?  Will we?  What will become of us all?  that is what I wake up in fear of.

I said, before this all happened, in a post the day before she went to the hospital, that I wasn't sure there was any help out there.  Now, I see that there are places like Bradley, places besides home and school that can delight in Janey while dealing with her difficult behavior.  However, her time there is very limited, even if she is able to stay the few more weeks I hope for.  

I don't know what is going to happen next.  I don't even know how I'm going to pay all the bills from this current go-round (although this GoFundMe site has made that much less of a worry---have a look here if you are interested)  I want to think Janey will come home my same wonderful girl but with changed behavior, and it will be changed for good, and we all will live happily ever after.  But I don't think so.  One clue to this is how often we have been asked "Is this her first hospitalization?"  I guess there usually isn't just one.

If this whole experience teaches me anything at all, it's going to be to seek out and accept help a little more readily.  Even if it seems like help isn't available, I can see that might be at times because I am extremely resistant to ever saying "I can't do this any more".  I still am.  It makes me cry to think of our family not being able to care for Janey on our own.  I hope we can.  And even if we can't, I'm not sure we have a choice.  I think sometimes I need to stop looking down, to just keep on walking on the air.

On Not Following the Script

I had a dream last night (and I feel compelled to say to my dear friend Julie, as I always do when talking about dreams, that she is free to skip this reading, as she hates to hear about people's dreams) about being in an English class.  The teacher had asked me to write a script, a short play, and I had spent the whole weekend doing that.  In the class on Monday, the teacher was supposed to have the class read through the play.  However, he didn't---he did something totally different in class.  I got upset, and yelled at him, screamed he wasn't doing as he said he would do.  I acted in a way I don't act, except in dreams---I spoke up loudly and told him how angry I was.

I do think most dreams are random, but in reflecting on that dream this morning, I saw something I recognized.  I was taken back to another time in my life that, as now, the normal script seemed to have been completely abandoned, replaced by what feels like a horrible ad lib.

When I was pregnant with my first child, I avidly read everything I could find about pregnancy and childbirth.  I love to read, and I had a faith that everything I could need to know was contained in books.  At that point, the most popular book around was "What to Expect When You're Expecting".  It had a firm tone.  It told exactly how things were supposed to go, how you were supposed to act and eat and exercise.  Once in a while, it had off-hand mentions of rare, rare exotic and vaguely shameful things that could go wrong, but they were stressed as the exceptions.  I liked that.  I was going to do everything right.

Well, it didn't work out that way.  William was born at 7 months, weighing three and a half pounds.  I had developed severe pre-eclampsia, and his life and mine were at stake.  I could have easily died, taking him with me, just as I learned had happened long ago to my great-grandmother, while giving birth to my grandmother.  We found her death certificate online, showing she died of eclampsia the day after having my grandmother.  Thankfully, modern medicine kept William and me alive, but I was thrown into the world of parenting outside the script in a most stunning and abrupt way.

Many things with this current situation feel like 20 years ago.  Then as now, I had a child held in a hospital, one I could only see by visiting.  Then as now, before we visited, we were supposed to call nurses to make sure it was a good time.  Then as now, the visits took a drive---then through crazy Boston streets, now south down a long highway.  Then as now, it felt like I had left some script, that was ad-libbing, doing improv, living without a map.

I think one of the very hardest parts about parenting a child like Janey is that we feel so outside the script.  Ten year old girls are supposed to be in 5th grade, getting ready for junior high.  They are supposed to go to sleepovers.  They are starting to make the friends that will remain friends for life.  They are reading books like the Little House series.  They might keep diaries, or play sports, or collect a certain toy avidly.  I remember being 10.  Ten was the start of life in a lot of ways.  Ten year olds are not supposed to be in locked psychiatric wards because they were hurting themselves and others.  They are not supposed to be talking mostly in movie quotes.  They are not supposed to be non-toilet trained.  The script has been completely abandoned.

And yet, I am finding, as I get older, that almost nobody follows the script exactly.  Almost everyone you truly get to know has parts of their life that are off-script.  Some had a childhood of horrors they are still processing.  Some have lost children in heartbreaking ways.  Some have their own illnesses, mental or physical, which take a huge toll.  Almost everyone lives a life that in some way doesn't fit into the confines of the cheery, authoritative tone of the What to Expect books.

It's the scariest part of life knowing that there really isn't a script.  But there is comfort in knowing, for me, that it's the same for everyone. We all muddle through to some extent, and the best we can do is keep on ad-libbing to the end.

20 years of motherhood

Twenty years ago today, I became a mother.  I did so in dramatic fashion, with my son William entering the world two months early by emergency C-section after my pre-eclampsia had reached life-threatening levels, both for him and for me.  He weighed three and a half pounds, and I spent the first day after his birth in intensive care, with a dialysis machine on ready if my kidneys didn't start doing their job.  Luckily, they did, and luckily, William was out of the hospital in 3 weeks.  Today, we were with him at the moment he officially turned 20.  He is tall, smart and fun to be with, a sophomore in college.  But 20 years ago, we couldn't see the future, and we were terrified.

I think this start to motherhood affected me deeply.  From the very first minute of being a parent, I was taught that things don't always go as planned.  I never had even a minute of parenthood that wasn't coupled with that knowledge.  As William grew, and as his brother Freddy was born, I always felt a little on the edge of a cliff.  I never quite let my guard down.  When scary things happened, like both boys having asthma that at times led to rushed trips to emergency rooms, when Freddy screamed for the first three months of his life with colic, when we dealt with the ins and outs of parenting, I often felt surprised at how well most things did go.  My boys grew into themselves, discovered passionate interests, made us laugh with their insights and humor---I realized I loved being a mother, even if I was often holding my breath, waiting for what might come next.

And then came Janey.  And I realized that things don't always happen in an instant.  They sometimes happen slowly.  They take unexpected routes.  Our main worry about Janey for her first three years was her delayed physical development.  She finally walked after her second birthday.  She was talking quite a bit by then--in slightly odd ways, but well enough so that even though she was closely followed by Early Intervention for her physical delays, there was never even a suggestion of speech therapy.  It was when she was about 2 months shy of 3 years that I first had an inkling, a creepy feeling that something was changing.  Over the next six months, a little each day, she lost ground.  By the time she was diagnosed, at 3 years, 4 months, I was prepared.  I had had those 6 months to realize what was happening.  By that point, there was really no question.  She barely spoke, her eye contact was almost gone, she stared at her hands for long periods of time, she cried suddenly and fiercely over things none of the rest of us could figure out.

Her diagnosis didn't feel like a surprise.  I think I had been braced for something like that from the moment I became a mother.  The fact that she has progressed very little over the years, that she is most definitely on the lower end of the spectrum, that although she delights us every day, strangers on the street can and do see her autism at a glance---it somehow feels like something I saw coming that day 20 years ago.

Despite that, or maybe even because of it, being a mother is still the most wonderful part of my life.  Every day, my kids delight me and surprise me.  Every day, they amaze me.  When I think that I am the mother of three children, that I have raised three unique, fascinating, extremely cool kids---well, I sometimes still feel like I did 20 years ago---amazed and stunned that it has all happened.  Motherhood doesn't come with any promises.  It doesn't come with any sure paths, with any guarantees.  But it comes with rewards, so many rewards, and hugging my 20 year old son tonight while my other son and my daughter laughed and watched---that was one of the best ones.

Randomness

Lately, for some reason, I've been thinking a lot about how random events affect lives.  If I hadn't happened to look in the paper the day I found the job that led me to meet my husband, I probably never would have met him.  If I hadn't happen to take the bad step out of my parent's travel trailer back years ago, I wouldn't have broken my leg.  And, through a combination of factors that are not all certain, but that lined up in a certain way, I have a daughter with autism.

I think most people have a feeling deep inside them, until something happens to change it, that their lives are somehow charmed---that they do things right, and because of that, life is not going to deal them surprises they aren't ready for.  I know I felt that way, anyway, until my first pregnancy went badly wrong and I wound up having an emergency C-section and being inches from losing working kidneys, feet from dying.  For a while after that, everything felt uncertain.  I realized that I had no special dispensation from life's tougher dealings.  Anything could happen to me.

After a while, once you realize that you are not untouchable, you stop thinking about it as much.  But I don't think you are ever quite the same.  You are never quite as surprised when things go awry, for reasons outside your control.  Janey having autism was not something I anticipated, but somehow, I don't think it totally blindsided me either.  I knew it could happen, because I knew anything could happen.

Why am I writing about this?  It's because I think sometimes the people that don't get having a special needs child, and to put it more broadly, the people that don't believe in helping others down on their luck, are people that have never had that experience that makes them realize that they too could be in the shoes of those "others"  If you truly feel you have control over what happens to you in life, it makes sense to oppose funds to help those with children with special needs, or those who wind up without a job or a way to feed their children, or those who lose their homes in disasters or their sanity to mental illness.

I think sometimes of the reception Janey gets in different kinds of places.  Almost always, the toughest places to take Janey are places where I think the percentage of people with lives untouched by true unexpected hardship is high---fancy stores, upscale streets, hushed cultural events, vaulted academic settings.  I am in no way saying there aren't people in these places with lives that are far more troubled than I can ever know, but there are less of them, I think.  When I take Janey to the convenience store near our house, I almost always get smiles, kind words, understanding looks.  It happens too often to be chance.  The people there often look as if life has been tough for them.  But they seem to get Janey---to at least get what it's like to have a child or to be a child with special needs.  It's a pattern I see a lot.  The people that embrace Janey, and embrace our family, have for some reason been through tough, unexpected times.  They have been hit by life's randomness.

A long time ago, when Tony and I were first married, we stayed at a hotel where in the room across from us, a child screamed all night.  I hope we weren't uncaring as to the plight of the child or the parents, but I don't remember thinking "those poor people!  That poor kid!"  Tony and I think of that child a lot now.  I have heard that screaming now, from my precious Janey, so often.  I feel quite sure the child was autistic.  I wish sometimes I could go back in time and somehow help those people, instead of feeling annoyed and wishing they weren't there, as I did at the time.

I wish I could believe things happen for a reason.  But I don't believe that.  I believe life is pretty random.  But we can choose how we react to the randomness, and we can ease each other's way, because someday, we ourselves might be the randomly chosen one.

The credit and the blame

In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion.  I would say almost no-one thinks that any more, thankfully.  Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault.  We didn't cause it.  We might not know what caused it, but it wasn't something we did deliberately or even indirectly.  We don't take the blame, at least on our better days.

I'm wondering, then, why so many mothers feel it is there job to FIX the autism.  We can accept we didn't cause it, that nothing we did made our kids they way they are.  The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism.  However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism.  We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children.  We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.

I am trying hard to not do this.  I'm trying to be consistent.  I know I didn't cause Janey's autism.  I don't know what did cause it.  And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism.  That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.

This is where my older son comes in.  He was also at one point, when he was very young, diagnosed with autism.  That was changed within a few years to an Aspergers diagnosis.  When he was 8, testing showed he no longer fell into the autism spectrum.  When he was 12, we stopped having him on an IEP at school.  Last week, he graduated from high school as valedictorian of his class.  He heads to Brandeis in the fall.  This is where I have to practice what I preach.  I don't take the credit for his "recovery"  I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him.  He did that himself.  It was what was meant to be.  I am proud of him, but I in no way at all take credit for him.  If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.

I believe in autism acceptance, mostly.  And I think that needs to mean an absence of credit or blame.  Janey is who she is.  She is a full, complete, complex person just as she is.  Talking about credit or blame makes her sound like a project, not a person.  The same holds true with William, my older son.  As tempting as it can be to feel we can really change our children, I truly believe we can't.  We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own.  I'm not quite there yet, in fully believing that, but I am working toward it.

Early on Thanksgiving Morn

I had intended to write a post about all I am thankful for today.  That's the traditional Thanksgiving thing to write, and I am certainly thankful for much---wonderful people in my life, great schools, an amazing family, music, books...many things.  But somehow that post was not getting written today.  Last night was tough, not just with Janey but with all three kids---lots of emotions, parent vs. child expectations for family togetherness, the holiday stress, medical issues---it was a hard night.  Not that I'm not still thankful as all get-out, but I thought I'd write a more specific post---about Janey, about being thankful for her.  And I am---with all the challenges she brings, I am hugely thankful for her.

Where to begin?  Maybe when I found myself a bit surprisingly pregnant in my late 30s.  Not that we don't have an idea how people get pregnant.  Not that we didn't realize you don't have to be actively "trying" to get pregnant, just a little not careful.  I won't get TMI (for you older folks, that's Too Much Information) on you here, but finding out on the day after Christmas 2003 that we were expecting child #3 was a big surprise, and a happy one.

And then of course, leaving out all the extremely tough parts of the pregnancy, there was that amazing moment when I got the call about the amnio, the news that we were going to "get our girl", as lots of people put it.  That was one of the peak moments of my life.  I loved having two boys first, but we were ready for a girl.

Leaving out again the hard parts of her birth, the moment I first laid eyes on my Jane was another flashbulb memory, an wonderful one.  She was unexpectably very blond, very light and so, so beautiful!

As Janey grew from beautiful baby to adorable toddler to amazing little preschooler, we had three years without autism.  There might have been signs, but they were subtle enough that early intervention (who saw her because she didn't walk until she was 2), her pediatrician and many other eyes didn't catch it, even though we knew she was at high risk.  I have buried a lot of memories of these early years, and I wish I hadn't.  She was a quirky but fascinating little tiny girl, one who delighted us greatly.

And then the regression.  And the hard years started, the years that continue on.  But still---so much to be thankful for.  Through all Janey has been through, she has retained some amazing traits.  She is physically very graceful---the athlete Tony didn't really get with his boys.  She laughs like no-one else.  She surprises people constantly with her affection, which cannot be bought or bargained for, but is given like an award to those who have earned it.  She adds to our family in so many ways.

I am grateful in a special way for Janey's love of music.  We listen together to songs every day in the car, on the computer, everywhere music lives.  She knows what she likes, and when she loves a song, and we look at each other in amazement at the glory of her favorites, it's the purest, most heart-felt connection I've ever felt with anyone.  It bypasses the autism in her and goes right to the part of her brain that seems to have been never touched by the autism storm.  We connect as equals, or as her my superior, in our love of the music that touches us.

I am thankful I have been given Janey.  She was not the result of a trip to Paris rerouted to Holland.  She is a destination of her own.  For all the challenges, the tough days, the tears, and I will never pretend that there aren't many, I am still thankful beyond my ability to write for Janey, the real Janey, the endlessly frustrating, endlessly challenging and endlessly amazing daughter of mine.

What Made Janey Autistic...#1 in a series

Whenever I run down lists of possible causes of autism, I find no shortage of reasons Janey might be autistic.  Usually, I'm left wondering how she got away with only one case of autism---you'd think she'd have some special kind of double case.  Today, I read this article, about how having the flu and a fever during pregnancy can raise the autism risk, and it brought back one horrible night very vividly for me.  If this was THE cause, it would be a dramatic, specific cause.  So I'll call this #1 in a series, and try to write about some of the other possible causes in the next few days.

That night.  It was about 5pm, and I was tired.  Not regular tired, but a tired beyond anything I'd ever felt in my life.  I was 12 weeks pregnant with Janey.  It had been a very tough start to the pregnancy.  My blood pressure shot up as soon as I got pregnant, from its normally low levels.  It was very obvious this was going to be a pregnancy like my first one, with William, and not like my second one, with Freddy.  The decision was made to put me on blood pressure medication at an appointment at about 10 and a half weeks.  My regular doctor wasn't there.  The doctor who filled in was someone I think introduced herself as some sort of student, or intern.  I wish I remember for sure.  She wasn't a regular in the office.  She prescribed Aldomet, and said "It's extremely safe for pregnancy".  I took her at her word.

After taking the Aldomet for about a week, I got tired.  Not regular tired, but a bone tired.  My face was pale, not a little pale, but people gasped when they saw it pale.  I figured---I was pregnant.  Being pregnant makes you tired.  I remember driving home that fateful night from picking up the boys at school.  I realized I was fighting off sleep, after sleeping much of the day.  When Tony got home, I lay down on my bed.  Suddenly, I realized I felt very, very sick.  It felt like I had felt that way for days, but somehow my mind had not registered that fact.  I decided I should take my temperature.  I couldn't find the thermometer.  I searched and searched, and was about to give up when I did find it.  My temp was 103.  I knew that wasn't good, even in my dazed state.  I called the doctor, and I am not sure if I even made sense.  I said I was coming in, to the evening clinic.  I think they started to ask questions, but I just repeated I was coming in, and hung up.  I called for Tony.  As he was walking over, I think I fainted.  I fell onto the bed, anyway.  He managed to get me in the car, and we went to the office.  By that point I was shaking violently.  When they took my temperature there, I remember the nurse held the thermometer up for me to look at.  It was up to 104.  They called a doctor quickly into the room.

The visit from there is a little hazy.  I know they gave me an IV right away, because I was extremely dehydrated, so much so it was very hard to get the IV started.  I know they took blood.  And I know after a bit, the doctor came back and said I was having a rare reaction to the Aldomet.  My blood tests showed my white blood cells were dangerously low.  My liver function was dangerously compromised.  I was very, very sick.

They sent me to the hospital.  Again, the time there is hazy in my mind.  I know the doctor there said she had never heard of Aldomet causing that kind of reaction.  She researched, and there it was.  It even has a name----Aldomet Fever.  They took all kind of blood, including a kind of special test where they had to scrub my arm for a long time and took what looked like a soda bottle full of blood.  And, at some point, they did an ultrasound.  There was the heartbeat, beating away.

It took me a long time to get better.  And twice more, doctors said things like "I don't think this was caused by the Aldomet"  I printed out a sheet from a Merck Manual online, listing the three things that constitute the type of rare reaction I had---high fever, low white blood cells and liver disfunction.  One of the doctors, I still remember, looked shocked and grabbed the sheet from me.

Much, much later, just a year or so ago, I learned that my aunt also had a terrible reaction to Aldomet.  I hadn't know this.  I also endured a similar reaction when given a sulfa drug a few years ago.  My records show I'm allergic to Aldomet, but no-one made the connection that people who are allergic to Aldomet often also have a sulfa drug allergy.

I remember asking my OB, after my fever had gone down, how this all would affect the baby.  She said that a sickness so severe at 12 weeks usually would have caused a miscarriage.  If it didn't, she said, the baby would probably be fine.  And I know, based on what was known at that time, she believed that.

So---did the Aldomet-provoked sickness cause Janey's autism?  I don't know.  The fever might have, based on recent research.  What it did do, though, was cause me to never again completely trust medication, or, for that matter, doctor's knowledge of medication.  I am very, very grateful that first doctor caught the Aldomet connection.  She was young, and I think she took the time to look up the possible Aldomet reactions.  The older doctors that later questioned the reaction were probably doctors that had prescribed Aldomet for many years, and hadn't seen a reaction.  That's why they call it rare.  But it happens.

I think about that night a lot.  I think I was dying.  I think if I had kept taking the medication, I would have died.  I know that sounds dramatic, but I think it's true.  And a reaction that serious---it's very possible that would have affected Janey, especially at 12 weeks, which always comes up in what I read as a crucial time in development.  But who knows?  As I've said, there are no shortage of other possibilities. If I believed in fate, I'd say that fate wanted Janey to be autistic, and took no chances in making sure she was.

Easy ways to avoid having a child with autism

So you are thinking of having a child, and would like to have one free of autism? Well, you've come to the right place! I've got your easy plan right here! Just follow these instructions and you might well become the lucky parent of the latest autism-free model child!

First of all, you need to make sure you are creating this child with the right person. Take a good hard look at both your pedigrees. Is there anyone with autistic-like tendencies there? Any secret Thomas-the-Tank-Engine lovers? Genetics is one of the possible causes, you know. Assuming that every last one of your ancestors are free from any suspicion of secretly autistic traits, then take a look at the age of the male of your couple. It's a rare case where the woman seems off the hook, but if the male is an older father, it's thought that almost all the new weird genetic mutations that might lead to autism come from his side of the contribution. So you might want to trade him in for a younger model. The other factor you want to check both sides for is the presence of autoimmune disorders, which might play a role in autism. Any diabetes, asthma, arthritis, thyroid disease, lupus, MS, stuff like that? No? All set there? You are ready to get pregnant!

Now there are just a few rules you must follow when pregnant. First of all, don't get sick. Fever during pregnancy is thought to be a culprit. It might be good to isolate yourself all during pregnancy to avoid that. Next, look long and hard at medication you might take. Ask your doctor. Your doctor might say whatever you are taking is just hunky-dory, and then a few years later it's discovered that it isn't. But doctor's orders! So if you take any medication at all, you might want to go back a step and not get pregnant to start with. Avoid being overweight. Avoid getting pre-eclampsia. Avoid being stressed. Avoid getting pregnancy-induced diabetes, or any thyroid problems. Just to be safe, have a picture-perfect pregnancy in all ways.

Now---during the birth. Don't have any birth trauma or lack of oxygen. Don't have your baby prematurely. Hold them right away and let them know how welcome they are. Most people don't believe autism is caused by "refrigerator mothers" subconsciously rejecting their babies anymore, but you know how those things swing back and forth, so avoid ever thinking a single negative thought about the baby.

Now it gets tricky. There's the vaccine question. Science doesn't seem to back up that vaccines or mercury in vaccines cause a problem, but many mothers and blogs and celebrities think it does, so you'll have to decide on that. Make sure the baby doesn't get any infections soon after birth, viral or otherwise. Some people think lately autism is caused by an over-clean environment not teaching the body some early immune responses, so be reasonably casual about germs, but of course, that's subject to change at any point, and if it's later decided dirt causes autism, you'll never forgive yourself. Lack of vitamin D is one theory, so live in a sunny climate. Too much rain could be a problem, so if you get hit with some long rainy spells, move. There's the whole possible diet connection, with lactose and gluten being suspected as problems. Who knows, but why not just never serve any of them to be sure? Early TV could be a problem, so get rid of your set.

And of course, if your child STILL is stubborn enough to show even the slightest autistic trait, you want to nip it in the bud. Have your child screened for autism starting at birth, probably every week will be enough. If you see the slightest sign of it, start ABA about 100 hours a week immediately, until your kid is so normal they could be a model for normalness.

And you know of course this is all very tongue in cheek. I've just been reflecting a lot lately on how the almost daily new ideas about what causes autism must put through the heads of someone determined to do all they can to give their kids a good head start, a nice autism-free life. And the moral is, of course, you can't do that. You could do everything possible known right now, which would result in some crazy doings, and in a few years, it could be determined that everything you thought right was wrong. We just don't know what causes autism. There probably isn't any one thing that causes it. So do what you feel is best. Do what you yourself decide is healthy and reasonable to do. Listen to a good mainstream OB/GYN or pediatrician. Use your own judgement. Don't listen to what bloggers say, including me.

And if, all else failing, you do end up with an autistic child, I'm here to say it's not the end of the world. You aren't a terrible person for somehow not being able to prevent that happening. You are a parent that like many parents from the beginning of time, were dealt a tough hand, but you will deal with it. Your child may not take you to Holland, but they will give you moments of extreme joy along with the hard times. Congratulations on your child, autistic or not.

Happy Birthday to my 8 year old

Janey is eight today. Eight years ago, a scary, scary pregnancy ended in a scary birth, and I was able to hold my surprisingly blond little girl for the first time. The nurse remarked she hadn't seen such an alert and engaged baby in a long time. She looked at me intently while she nursed so well, that first half hour. I think that half hour after her birth was one of the last times I had no worries at all about my sweet girl.

Today, where is Janey? In some ways, this past year has been one of progress. Although I'm always terrified of a jinx, she is doing far better with toilet training than I would have hoped even a few months ago. When she's at home, able to get her clothes off easily and near a potty, she's getting close to probably 80% success. That is wonderful. She had a very good year at school. Academically, she learned more than all the others years of her life combined. She can write a J, she can identify lots of letters, she knows a few of her colors down flat, she can usually pick out her name from other names...having a great ABA specialist and great teachers was, well, great. But other areas are not as encouraging. Last night, she woke at 1am to cry for literally 4 hours straight. It's been a while since we've had a night that bad. We've been in a crying spell for a few days now. She still rarely answers us. This year has seen the start of Janey The Menace, who left unsupervised for seconds will always, always find a way to do something messy and destructive. Twice lately, she attempted to run away from me in parking lots. In short, Janey is still quite severely autistic. And she, barring miracles, always will be. My beautiful, amazing girl, is, if you put it in harsh terms, a girl with low-functioning autism and retardation.

However, sometimes we have to just put that all aside and remember that it's close to a miracle that she's here at all. My pregnancy and childbirth left many opportunities for that not to be the case. Even the fact she got started was a piece of luck. Both the boys took a little help from fertility medication. She was just given to us, a present. Life with her is not easy. I don't think it ever will be. But there are those moments when Tony and I look at her, when she is smiling and happy and funny and interesting and beautiful, and shake our heads that we got so lucky.

Okay, another check on the checklist

The latest news from the world of autism? Fever during pregnancy can double the risk of autism. Here's an article. Lovely. Another way I caused Janey's autism. It's like I went into the future, found a list of all the ways they were going to decide autism could be caused, made up a checklist and tried to hit them all. If there was something called double autism, she'd probably have that, I hit so many of those checkmarks.

The fever I had, at 12 weeks, was pretty severe. It was caused by my reaction to Aldomet, which I was put on due to getting preeclampsia (high blood pressure and other problems) early in my pregnancy. Of course, preeclampsia is another risk factor recently discovered for autism. Of course.

I can't wish they wouldn't discover all this stuff. I want to help other mothers-to-be. And I know that I certainly didn't MEAN to put Janey at risk for autism. I would have done ANYTHING during my pregnancy to avoid it, if I had known. But I didn't. Nor did Tony, who was an older father, one of the rare instances where fathers can join in the guilt parade. I didn't know another medication I was taking, which I repeatedly asked my OB if I should stop taking, would later to said to be another possible cause.

I know it doesn't do a bit of good for me, or for Janey, to get upset over all this. I don't have a time machine. I can't change anything. And I should feel happy for others, who might not have a child with autism due to all the recent discoveries. But of course, I feel guilty. That's what mothers do.

Distrust

Through a long complicated series of events, I've been forced back into thinking about Why. Why Janey has her issues. I got a skin infection and was put on a sulfa drug. From the minute I started taking it, I didn't feel good. After a few days, I knew HOW I didn't feel good---I felt like I did when I was taking the Aldomet, when I was 12 weeks pregnant with Janey and had a near fatal reaction. If I had been smart, I would have stopped taking the drug right when I realized that. But instead, I tried to do the right thing---I called my health plan and tried to explain how I was feeling and ask for a different medication. The nurse I talked to shut me down---basically said she was sure I had no reaction to the medication and I should keep taking it. And I did---right until after a dose I took last night sent my throat into a closing up feeling, and I wound up having an ambulance ride to the emergency room, where I had quite a fever, chills and blood tests showing my liver function was being compromised---AS WITH THE ALDOMET. And even then, the first doctor I saw said he was sure there was no connection---JUST LIKE a doctor said the day after the awful Aldomet reaction. Finally the second doctor did acknowledge what I had already read many places on the internet---that sulfa drugs often cause a fever reaction and coughing similar to mine, and I should stop taking it and not take sulfa drugs again.

I don't know if the Aldomet caused Janey's problems. I can never know for sure. But I think a lot about the day they were prescribed for me, when my blood pressure was rising fast early in the pregnancy. I saw some substitute doctor that day, and she was so casual---"Oh, Aldomet's the safest drug around, very good for pregnancy...." And I guess it often is, but my later research has shown it often causes horrible side effects, almost every one of which I experienced. That, and other experiences, like the neurologist who sort of off-handedly said Janey's MRI wasn't normal (while a further one said it was normal, and still, who knows?) and the recent few bad experiences with taking Janey to doctors, has left me with a distrust. Not of all doctors, and not of medicine in general, but of taking what doctors say as gospel. I'll never have that faith again. I need to always verify for myself.

And it comes back to WHY? The useless question. If I had gone to a big hospital for my medical care with Janey, rather than staying at the smaller clinic where I was comfortable, if when Janey's heartbeat started lowering to almost nothing, they had done an immediate C-section and the cord had not been strangling her, if I had not taken the Aldomet, if somehow my pregnancy was like the one with Freddy, healthy---would Janey be okay? Or should I think the other way---that it's a miracle she's here and as relatively intact as she is? Should I have gotten the message with William that my body is not cut out for pregnancies, and stopped there?

None of these questions have any answers, and I should not ask them. It doesn't do anyone any good. But I do need to keep a lesson in mind. I know my body. I know my kids. If something feels wrong, I need to respect that feeling. The consequences are possibly too much if you don't.