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.

Okay, Scientists, You Got Me Again!

Once in a while, I have a sneaking suspicion that autism researchers are messing with me.  I think they get together and say "Okay, let's pull up Suzanne's medical history and that of her family, look at everyplace she has lived and all the circumstances of her pregnancies and childbirths.  We'll pick something new from all of that this month to release as a possible cause of autism.  Wait 'til we see the look on her face!"  Of course, I'm not truly that paranoid or self-centered, but sometimes it's amazing how many potential causes of autism would work for me.

The newest is iron intake.  I have almost always tested as anemic, and that was very much the case during all my pregnancies.  With Janey, it was exasperated by the fact that the iron I was taking seemed to interfere with my thyroid medication.  Because having a thyroid basically not working was considered much more dangerous than having a low iron count, for the last half of the pregnancy, I didn't take iron.  I tried hard to eat a lot of red meat (despite popular belief, I was told it's a far better source of iron than green vegetables), but still, my iron remained low.  So there's another reason for Janey's autism!  It joins a nice long list, including the low thyroid itself, a family history of autoimmune disorders, my allergic reaction to Aldomet at 12 weeks pregnancy, the fact I live near a major street, several possibly on the spectrum people in Tony's family and mine, Tony being an older father, my living my first 6 years near Lake Eire at its most polluted with PCBs, preeclampsia during my pregnancy, birth trauma (Janey's umbilical cord was around her neck twice)....that's just the ones I can think of easily off the top of my head.

Those scientists missed the boat with ONE potential cause I saw the news today---having children very close together.  However, I'm not out of the woods with that one, because if you wait TOO long to have a child, over 5 years (there is 7 years between Janey and Freddy, exactly), the risk of autism again rises by 30%.

What do I do with all this?  Not much.  There isn't anything I can change from the past, and I'm certainly not planning on having any more children---I'm 48.  I am glad research is being done, but all joking aside, the fact that so many of the factor apply to me is probably the case with many parents of autistic kids.  There are so many potential reasons thrown out there that I couldn't imagine being a pregnant woman trying to avoid all of them.  There's just too many.  I think about this in terms of my sons someday.  If they become fathers, there were certainly right off the bat be an increased risk of them having a child with autism, and I feel for their future wives thinking about them trying to avoid any further risk.

Do I sometimes feel guilty about all the risk factors that might have affected Janey?  Of course I do.  I know I shouldn't, but guilt isn't a logical emotion.  I don't obsess over it, but I think about it.  I get angry about a few of them, especially the Aldomet reaction.  I wonder if I should have had a C-section---if a good ultrasound could have seen the cord around Janey's neck.  I worry I didn't do enough to keep my iron up.  I have other worries, the kind that suddenly hit you in the middle of the night and aren't logical, but the middle of the night brain isn't good at logic.

I hope some day, all the possible causes of autism are narrowed down, or at least better defined, so that knowledge of them can be incorporated into prenatal care and PREprenatal planning.  I suspect, though, that no matter what, we'll never totally have answers about autism's cause.  I hope society will do its very best to support the children that, despite all the research, still develop autism.

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.

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.

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.

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.