Thoughts during the calm

Calm Janey

My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Janey with a cold

For most kids, getting a cold wouldn't be too remarkable an event.  But Janey almost never gets sick.  She honestly has gone years without a sick day from school, years without a fever, years without a cold.  It's quite remarkable.

Yesterday, however, she woke up obviously sick.  She was coughing a huge cough, and  her nose was running.  And she wasn't happy, not at all.  I thought about what my mother has said---if you didn't know what a cold was, you'd think it was something very serious based on how it makes you feel.  And Janey had next to no frame of reference for her cold.  I can imagine how scary it felt for her.

She spent much of yesterday in fury and tears.  After about a month of fantastic behavior, it was hard to see.  When she is good, she is SO good that it's almost hard to imagine how bad it can get, although you would think we'd have better memories than that.  She came to my bed first thing in the morning and immediately bit me, which she hasn't done in quite a while.  I had to pull her off me.  She didn't bite again, but there was a very lot of screaming and hitting and fury, and some of Janey's unique brand of angry mischief.  She took a two liter bottle of soda and poured it in my dishwater, she threw ice cream at the television, things like that.  It was  a long day, but I kept reminding myself how she must have been feeling.

This morning, despite her cold, which was about the same, we decided to take her with us when Tony drove me to the doctors for a physical.  That was a good decision.  It seemed to reset her mood.  She was all smiles, and although she's been acting out a bit more today than on her very best days, overall, she is far happier than yesterday.

This cold has led me to think about a few theories I have about Janey's autism.  I truly think that something autoimmune is at least a very big contributor in Janey's particular case to her autism.  Our family is auto-immune central.  Just about every one of us on both sides has something going on that is an auto-immune issue.  I think maybe Janey has some small illness around the age of 2 and a half, and her body hugely over-reacted.  I can't remember the illness, but it wouldn't have had to be anything big.  It was the reaction that was big, way too big.  I think that same overactive immune system keeps her from getting sick, even when she's exposed to all the illnesses other kids in her classes have, or when she was at the hospitals she was at.

And I actually think this cold might be a good sign.  Maybe Janey's body is letting down its guard a little.  Maybe it's no coincidence she finally got sick now, after such a great stretch of behavior.

Of course, I'm not a doctor, or a scientist, or a researcher.  I am sure there might be all kinds of flaws in this theory, and I might be totally off, but it's a theory that to me, anyway, makes sense.

In terms of how we react to Janey, I've been thinking about how calmer behavior on her part leads to calmer behavior on our part.  If Janey had been in one of her very tough moods for a month leading up to this cold, we would have been much more discouraged by her behavior yesterday.  But at least for a day, we did pretty well handling it, I think.  We stuck to what we know works with her---keeping her active (which would have been hard if the illness was more severe than a cold), keeping our speech tones calm, keeping her well fed, telling her verbally what we planned to do and where we were going even if we were only leaving the room for a minute (that's especially important with Daddy!)

I hope Janey's cold is a quick one, and she goes back to her healthy ways, but I wouldn't mind a little illness here and there if it means her body is relaxing a bit, physically and mentally.

Allowing ourselves to feel sad

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

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

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

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

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

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

Life Isn't Fair...and other negative thoughts

I will start with a confession.  Almost every day, I dread Janey getting home from school.  It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.

I try, very hard, to figure out ways to make this time better.  I've written about that before, quite a few times.  I think hard about what to do to improve the time.  Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home"  Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things.  When the weather allows it at all, we spend time outside.  This spring, I plan to add a nice long walk to the daily routine.

Today, it all went downhill quickly.  We had the snack---lots of leftover Chinese food.  We played toys.  I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so.  (Actually, I played with them and she watched---that is how most of our playing goes)  I read her a book about Little Ponies, and she sort of listened.  Then we put on a video.  She has enjoyed some Weird Al videos lately.  She did today too, until one came on that bored her.  I tried to find something else she'd like.  I took a chance on "Dancing Queen" by Abba, which she seemed to like at first.  But then she stopped liking it.

I knew she'd stopped liking it when she kicked me, hard.  As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much.  I cleared away quickly enough so she wasn't able to bite me, as she was trying to do.  I shouted for her to get on the bed.  I try to stay calm, but I wasn't feeling calm, and yes, I yelled.  She got on the bed, in a fury.  She tried to get up immediately, and I told her to stay where she was.  She lunged at me.  I walked away.  She got up.  I stopped trying to get her to stay on the bed.  I didn't want to be bitten or hit again.  She asked for strawberry milk.  I said no, not right then, not the way she'd been acting.  She decided to fix it herself.  As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.

At this point, my mind just kept saying one thing, a not very useful thing.  I was thinking "This isn't fair"  I haven't really thought that in that particular way before.  I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair"  What I was feeling right then wasn't that, though.  It was feeling that the relationship between Janey and me isn't fair.  I try, I try so very hard.  And she seems to try not at all.  I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.

Of course, I realize that isn't fair to think.  Janey is not capable of seeing things from my perspective.  She isn't purposely trying to make my life hard.  I am sure she doesn't want to be the way she often is, angry and destructive.   But damn it, it gets hard sometimes to be her parent.  It gets hard to see the silver lining.

Lately I have very little energy.  I am not sure why.  I am tired all the time.  Some of this might be depression, or hopelessness, but a lot of it is probably physical.  It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work.  Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs.  The tiredness, whatever the cause, isn't helping matters.

Still, things are better in a few ways, I realize even on my worst days.  Janey is crying less and sleeping better.  She is calmer overall, for sure, than she was during the dark days in November.

It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth.  I don't like to be downbeat.  It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted.  I'm trying to work on that---on feeling like I have to be upbeat when I'm not.  So---no cheerful ending, although I'm fighting the urge to include one pretty severely...

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.

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

Partially Respited, Partially Not

This morning, Janey went to the respite house, which we are calling "The Treat House".  They did a trip to the aquarium, then to the beach, then back to play outside.  Janey seemed happy to be going there, and happy when Tony picked her up.  The respite lasts from 8-2.  We were lucky enough to get a scholarship for the rest of the year for their Saturday program, which otherwise would cost $65 a day and be a little out of range.  It takes us about half an hour to drive to where it is, so it gives us 5 hours outside of the driving on days she goes, which I guess will be about twice a month (they have 3 Saturday programs a month, but I'm figuring on average only 2 of them will be something we think Janey would like).  10 hours might not seem like a lot in a month, but once we settle into it and really believe we have it, which still seems hard to believe right now, I think it will be a big help to us as a family.  Today, unlike the first two times, we didn't attempt a meal out with the boys (that was getting expensive)---Tony did housework and I put a few things on ebay.  It's surprisingly relaxing to work when you know you won't be interrupted every few minutes by hysterical crying.

Tony and Freddy are now out for a rare treat---a Red Sox game.  They got free tickets, and I think they are enjoying themselves even though the tickets are in one of those spots Fenway Park is famous for---an obstructed view seat, which means just like it sounds like it means---you can't really see the field.  But you are there!  William has gone as our sole family representative at a party we were all invited to, and Janey and I are here.  It's been---tiring.  I start times like this with all kinds of resolutions to keep Janey happy.  We went in the wading pool, we read together, I watched a video with her, and then she started freaking out, for no reason I can figure out.  REALLY freaking out, as she does lately---scratching herself until she has welts, screaming the same nonsense sound over and over, trying hard to bite herself and me, flinging things--all that.  At the same time, predictably, my afternoon tiredness kicked in.  I think being Janey's mother alone could cause it, but it also is caused by the one autoimmune disorder I have been formally diagnosed with, Sjogren's Syndrome, and the other two that blood test show I probably have, but which I don't yet have all the symptoms of, lupus and scleroderma.  Just for fun, I also have a severely underactive thyroid, which I'm taking about as high a dose of replacement as you can take, after having my dose raised over and over.  So the tiredness---yeah.  It's pretty bad.  Times like this feel very, very, very, very tough.  The morning's respite feels a million hours ago, and I feel like I am not grateful enough for it.  I struggle to stay awake, and not just awake but alert---alert to Janey's self-destructive behavior, to her grabbing every food around to take a few bites of and then throw the rest on the floor and step on, to her pulling stuffing out of the couches, to her taking off her clothes over and over, to the possibility of her using the floor or furniture as a toilet...to all of that.

And so, what is my point?  I guess it is that I feel guilty.  I feel guilty that taking care of my own child is so tough.  I feel like I should just be feeling grateful I had respite this morning, that she went to 6 weeks of summer school, that she will soon be starting school again, and still, just an afternoon and evening alone with her is so hard.  I am angry at my own body, for feeling old and tired, for having stupid disorders that make me tireder.  I am guilty feeling when I read blogs about people that homeschool autistic kids, that seem to have it all together, although in my realistic moments I know that even among autistic kids, Janey is tougher than most, and that what goes in a blog doesn't tell the whole story.  I am my own toughest critic.  I feel like a failure for not having "cured" Janey, although I would be the very first to say autism isn't curable, and to tell any other mother that such a guilt feeling is one they should banish from their minds for good.  I know once I sleep, once I get a bit more housework done, once I have a chance to regroup, I will be able to take a more positive, proactive stance.  But in the meantime, thank you to each and every one of you for again being there when I need to talk.

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.

Too Healthy?

A few days ago, I got a call from Janey's school nurse.  Janey has a red area on her face, which I had been assuming was dry irritated skin, but the nurse (who is fantastic) thought it might be strep.  She said a lot of kids in Janey's class had recently had strep which first presented itself as a red face race.  So Tony got Janey early from school and took her to the pediatrician's office.  They did a rapid strep test, which I wasn't too surprised was negative, and they said that they did think it was just dry skin.  I wasn't surprised not because I doubted the nurse, but because Janey almost never gets sick.

When Janey was younger, she did get sick now and then, but not as much as most kids do.  She has some fevers that would come and go, and she occasionally had colds, but never the illnesses her brother had, like croup or pneumonia or roseola.  Starting about three years ago, she started to basically never get sick beyond a very mild cold.  Sometimes, half her class would have whatever was going around, but Janey stayed steadfastly healthy.  She's had only one ear infection ever, and last year she missed only one day of school, for a non-illness reason.  And this is a girl that despite our best efforts, do not keep her hands out of her mouth, does not wash her hands unless we are there making her, does not practice on her own basic sanitation things that are recommended to keep someone healthy.

My pediatrician has noted Janey's lack of illness, and said she's probably in the 98% or 99% percentile in terms of healthiness.  He also noted it's something he sees fairly often in autistic kids.  I have my own theory about it, which ties into my favorite autism cause theory, that's it's an autoimmune disease.  I think Janey's immune system is hugely overactive.  I'm not a doctor or medically trained, so I could be extremely off on how these things work, but it seems that she attacks any potential germs with way more than the normal force.  And I would not be at all surprised if that is what happened when she had her big regression.  Somehow, her immune system went wild and attacked her brain.  

Whatever the reason for Janey not getting sick, it's a nice thing.  I am knocking on wood all over the place here, as I don't want to tempt fate.  I can't imagine how Janey would deal with a major illness.  She would have no real idea why she was in pain, and she would not at all like to have to take more medication.  But if getting a little more sick a little more often would have meant that Janey wouldn't become autistic---well, I think that would have been a fair trade-off.  But those aren't choices we make---they are made for us.

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.

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.

Socks and the Chips Store

Lately, I've been having an even harder time than I usually do finding matching socks for Janey. I swear I can buy 100 pairs of matched socks, and within weeks, I have 100 socks, none of which match each other. It's a mystery. But it's been getting worse and worse, and I think I figured out why. Janey keeps bringing me a couple socks and handing them to me. It's her way of saying "Let's get going!" She much prefers bare feet, and has figured out that when socks get put on her, it's time to go someplace.

And the place she wants to go all the time? The "Chips Store". The chips store is the CVS on the way to and from Janey's school. It's where we occasionally stop for Janey's treat---which is usually a can of Pringe's Salt and Vinegar Chips. It's something I'd do usually on a Friday, as an end of the week treat. Last week, because Janey asked so clearly and nicely, and because I needed something else there too, we went on something like a Tuesday. The next day, Janey again asked perfectly, saying something like "I want to go to the chips store. Can you say Please?" and I couldn't resist. Then a third day last week, I needed to pick up books at the library across from the CVS, so I told her if she was very, very good while I picked up the books (which she often is not---libraries bring out her urge to scream and throw things), we would go to the chips store. She was great in the library, so we went.

And of course, I've created a monster. She wakes up and the first thing she says to me is "Go to the chips store". She brings me socks, and sometimes for further emphasis, my pocketbook. She gets herself dressed as much as she can. She pulls out all the stops.

And that is fine, except I don't want her to have a can of chips a day. The medication she is on can cause weight gain, but hasn't in her at all yet. I worry about weight issues as Tony is an insulin-dependent diabetic, as are most all the members of his family. They have a hugely genetic form of Type 2 diabetes, which hits them hard. Despite all Tony's hard work, he is going to have to start having more shots a day and more testing. It's the auto-immune issue popping up again---my favorite autism theory. I have autoimmune thyroid disease, Freddy and I both have asthma, another auto-immune disorder---it pops up on both sides of the family all over.

I wish I could find something else Janey loves as much and is as motivated by as the chips store. She is not like some kids with autism, with huge obsessions with certain topics or foods or items, although she gets crushes on things for a while, like Funions or certain songs. But the chips store is showing me the power of her increasing ability to make connections and plans. She is thinking ahead---"I need socks on to go to the chips store". She is controlling her behavior---"I need to be quiet in the library if I want to go to the chips store" She is using speech to actually ask for the store. It's pretty cool to see. I wish they sold very small cans of Pringles---we'd go every day!

What causes autism? And does it matter?

Well, of course it does matter, but by that, I mean does it matter to children and families already living with autism? It certainly matters to those future children who could potentially be prevented from becoming autistic if we knew what was causing it, but in a lot of ways, it doesn't matter much to Janey, or to me, in terms of our day to day life.

That's not to say I don't wonder, but I can't say I think a huge amount about it. That's been hard lately, as every single day, it seems, there's a new article out there with a new potential cause. They can't all be right, or maybe they can---I do think autism is caused in different ways in different kids, and they might ALL be a cause. But that leaves more answers than questions if it's true---which one caused MY child's autism? And it opens up the feeling that I think probably almost all parents of a child with autism have had---"it's my fault somehow" I know rationally it isn't. I don't take the credit for Janey being so beautiful, or my sons being quite the bright guys, or for William being musical or Freddy being a good actor. I don't take the blame for Freddy's health issues or any character flaws either of them might or might not have. So it stands to reason I shouldn't take the blame for Janey's autism, and in general, I choose not to.

But the list goes on---genetics, vaccines, older fathers, close spacing between children, overweight mothers, medication taken during pregnancy, mercury, thyroid problems during pregnancy, pre-eclampsia, ultrasounds, low birth weight, lack of oxygen at birth, diet, autoimmune disease, viral infections, brain defects, rain, too much TV, Tylenol...well, a huge amount of things. A fair amount of the list applies to Janey, making me think it would probably have been more of a surprise had she NOT been autistic, almost. But of course that's not the way to think, and it shows the problems with a lot of those theories---why don't ALL kids with those risk factor become autistic? Obviously there must be more than one factor at work in most cases.

If I personally had to guess about the cause of Janey's autism, at the current time I'd put three factors in the most likely list. First is the autoimmune disorder idea. Almost everyone on either side of our family has some kind of autoimmune problem. This goes along with factor two--preeclampsia. I was severely affected by this during my first pregnancy, and was to a fair extent while pregnant with Janey. My third thought is the severe reaction I had to a blood pressure medication I was given at 12 weeks while pregnant with Janey. These three factors all tie together. But who knows, really? I think most of autism is probably like that---caused by an interaction of factors. This is why I try never to get into the fray of arguments about what causes autism. I think everyone is right and everyone is wrong. Some cases of autism probably are caused by vaccines. Some are caused by genetics, some by birth injury. Most by a mix and match list of many factors.

But the end result, no matter how you get there, is autism. It's like the stupid Holland story. No matter why you ended up in Holland instead of in whatever country you were aiming for, you're still in Holland. I'm content to let the research and battle over what caused Janey's autism fight on without me joining in. My fight now is to give her the most meaningful life I can.