Trying to radically accept myself

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

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

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

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

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

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

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

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

How's It Going? Various Answers...

I saw an acquaintance the other day in a store, and she asked "How's it going?"  I of course gave the answer you give in that circumstance---"Good!  How are you?"  But when I got home, I started thinking about how I am really doing.  There are two answers to that.

The first is the raw one.  How's it going?  Not well, really.  I am feeling more overwhelmed than usual lately.  This is probably directly related to Janey's sleep.  It's been awful lately.  Last night she slept from 1:30am to 5am.  That was it.  She is understandably crazy today, but still won't sleep.  We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful.  A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.

Her behavior has been volatile lately also.  It's the tough time of year, between regular school and summer school, when there is no rhythm to the days.  Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good.  Janey freaked out regularly, and her freaking out is tougher and tougher.  It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun.  And of course screaming---loud, insane sounding screaming.  

I could do better with her, but frankly, a lot of days I'm too tired.  If I don't sleep, I am not in a good way.  This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state.  I just try to get through the day.  So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me.  The other day we went to a movie that the local autism agency, TILL, hosted.  It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes.  That didn't exactly eat up the day, but I felt better having done SOMETHING with her.  

I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted.  I am out of enthusiasm, at least for now.  I am not as able to rally any more.  I love Janey more than ever, and that love makes it even harder, because I am sad for her.  I am sad that she is so unhappy.  I am sad she is not making progress.  I am sad at the limits autism has placed on her life.  

However, the second answer to the How's It Going question is the one I need to focus on.  The boys like to talk about first world problems, and they are so right.  We have enough to eat.  We have a place to live.  We have medical care.  We have schools.  I have a wonderful husband with a steady job.  I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future.  I have books and word games and thousands of movies and TV shows I've never seen and would like to see.  I have my cats.  I have some amazing friends.  I have so many things that many people in this world will never have.  And to quote the kids again, YOLO.  You only live once.  Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going.  I can't say I always will.  I can't say I always remember how lucky I am.  Especially when I am bone tired, I forget, and I need to try not to.

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.

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.

Three hardest things, three best things

I got this idea from another person's post I read recently---what are the three hardest things and the three best things in my life?

The three hardest---well, number one would be autism. I hate autism. Autism is not Janey, any more than diabetes is Tony or thyroid disease is me. Autism for whatever reason hit my little girl hard, and won't let go. I hate it.

Number two would be not having the funds to do everything I'd like to do for Janey. I don't crave money for myself much, I can honestly say. I'm not someone who wants or needs what money can buy much---I've often thought if I had money for a mansion, within days it would be run down and messy and I would like it no better than my house now. But when I can't do something for Janey because I can't afford it, or worry about the co-pays, or just know it will stretch the budget to breaking point, that is hard.

Number three---tiredness. How I'm always, always tired---partly a result of Janey so often waking in the night, partly because I'm on edge so often, partly due to a thyroid that doesn't work much at all, some because I have insomnia often, partly because I'm overwhelmed. If I had more energy, I could do a lot better for my family.

And the three best things? Those are easier than the worst things!

First, my family. My husband, who is 100% totally a family man, my sons, who are two of the most amazing kids in the world and my beautiful, fascinating daughter.

Second---life's little pleasures. They don't get enough credit. That first cup of coffee in the morning, the word games on Facebook, a comfy bed when I'm tired, the first feel of fall in the air, good television, of course and hugely books and reading, a great lawn sales, a long talk with a good friend on the phone---lots more. At this point in my life I'm not going to be having a lot of life's BIG pleasures---fancy vacations, brand new cars, elegant meals out---but I've got more than my share of the little ones.

Third---the luck of living in this place and time. I know how lucky I am compared to so many people in this world, and so many time periods in history. Even 50 years ago, Janey would probably not be able to go to school at all, instead of going to the amazing school she does. Heck, 100 years ago that wouldn't be a problem, as I would be long dead from my first pregnancy, Tony would be dead from diabetes, Freddy would have died from the terrible asthma attack two years ago---we'd be a whole section in the cemetary. I try hard to keep in mind that chance of time and place have made me very, very lucky.

And now to try to sleep!