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.

Sleep, Depression and all that jazz

I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will.  I said the other day she never naps, so of course a long nap of hers about ruined this weekend.

Friday night was a little tough.  There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping.  For a while.  She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy.  I'd say it's almost like torture.  I feel desperately tired but I have to make myself stay awake, to keep Janey safe.  I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats.  Janey alternated between crying and hysterically laughing.  We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard.  Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup!  I want sauce (tomato sauce)!  I want noodles!  I want chicken!  I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside!  I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again)  I want shoes on! (which means she wants to go someplace in the car)"  We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good.  And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.  

Usually she's up for the day, but for some reason, not Saturday.  She lay down about 11 and slept right until 2.  We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap.  We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing.  When she got up, though, she was not in a good mood.  It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8.  Now watch that not be the case tonight).  And yes indeed, she was up at 2am.  We gave in pretty much and just got up with her.  We watched TV, including at around 4 a very interesting nature show about Australia.  Janey drifted off around then, and we were back to sleep until about 7.

That's a long story of sleep and not sleep---you are probably asleep now reading it.  And it has induced in me today a huge bout of depressed feelings.  When I have a few nights like that, I get NOTHING done the next day.  I don't get laundry done, work done, cleaning done, dishes done, anything at all.  Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that.  And I sit around and hate myself for being so tired all the time.  I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on.  But I hate days like this.  I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day.  I hate the mess around me that never gets cleaned up, because I never have the energy to do it.  I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome  and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder.  And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.

This isn't my best written entry here, I know.  I am rambling a bit, probably because I can barely keep my eyes open.  But it helps to write.  Thanks for listening, if you've made it this far!

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.