Stir Crazy Hodgepodge

The big storm last Friday has resulted in no school of course that day, but also today and tomorrow.  That's created a 5 day weekend, and Janey is not pleased.  Snow days are not her favorite thing.  She likes being out of the house, and she seems to have an internal clock and calendar that doesn't like surprises.  She was happy enough a lot of today, but lost it hugely toward evening, which might have also been prompted by Tony having a doctor's appointment after work---she might have thought he was gone on a trip again.  She screamed for about 2 hours.  After about 75 minutes, I called her brother Freddy, who was playing video games in his man cave, and asked him to come help, which he did promptly and well.  He played with her and cheered her up, but only when he was there---after about 10 minutes, he had to go, and she reverted to screaming.  It is always hard when other people can make her happier than me, although I know at points like that it's just because I'm out of ideas and at my limit.  She cried for a while for Daddy when he got home too, but then cheered up when he cooked for her, and is now asleep.  Let's all hope I make it through tomorrow in one piece.

One of the reasons she wants Daddy home right when she expects him so much is that he cooks for her.  I cook, but I don't cook as well as Tony, and I'm not as good at short order cooking.  He cooks her what she wants for dinner every night.  That was making me think about this article I read about problems with diet and eating in autistic kids.  I don't think of Janey has having many food issues.  She eats a healthy diet, and she eats well when she eats.  But in some ways, she does have issues.  She very, very rarely will eat the school lunch, per the reports I get, but when I packed her a lunch, she ate that even less.  She doesn't like food that is not hot, or that is not freshly made.  She also doesn't like bland food at all.  Her food needs to have an edge to it---to be hot in spiciness or temperature, to have a sharp or unusual taste, most of the time. Here's a picture of her with her favorite treat...

It's a pickled vegetable salad that my parents find at a store in Maine.  It's basically assorted pickled veggies in a brine that tastes and smells like sauerkraut.  I can barely stand to look at it, but Janey will eat the whole jar if you let her.  It's loaded with vitamin A and C, and is probably one of the better snacks she could have, but it's odd.  You aren't going to find it as a classroom snack at school.  I sent in a lot of snacks for her to eat during the day because she won't eat the lunches, but the things she would like most, like that slaw, would be a bit hard to serve in a classroom and would probably gross out the other kids.  I worry sometimes about how she'd get by if she ever had to eat conventional meals only---if she ever went someplace overnight.  I wonder if we should try harder to get her to eat more "normal" meals.

We have never tried special diets with Janey.  I watch her closely to see how her moods relate to her eating, and as long as she DOES eat, I haven't many.  If she won't eat for a while for some reason, she gets very upset, but I haven't seen a behavioral connection to what she eats, with one exception---caffeine.  She is EXTREMELY sensitive to caffeine.  Not that we are giving her coffee or caffeinated soda (although she sneaks both if she ever gets a chance) but she is sensitive even to the caffeine in chocolate.  If she has any chocolate at all past around noon, it's extremely hard to get her to sleep that night.  She goes into her hyper, manic mood.  This happens with even a small amount of chocolate, like a few M&Ms.  I can see how other foods that other autistic children might be sensitive to could bother them in very small amounts, based on this.

To make this a true hodgepodge, here's a picture of Janey out in the snow.  We couldn't stay out long, as she would not leave on her mittens.  She wants to touch the snow, and cold hands don't seem to bother her, but I didn't want frostbite to set in!  She had a great time the short time she was out, though.

Under The Breath Talking

Yesterday, Janey was holding the LaLaLoopsy doll I got her for Christmas.  I asked her, in the way that I am constantly talking to her without expecting an answer "What is your dolly's name?"  She then talked under her breath, and I think she said "Elizabeth"  I said "Is Elizabeth your friend?" and got another under the breath answer, which I took as "my best friend"

This set up a perfect example of something that Janey has done since she was very, very little, before even the regression.  She says some of her most conversational and meaningful things in a very, very low voice, not quite a whisper but a fast and low tone that is quite hard to hear or understand.  And I am never sure if I am hearing and understanding her correctly.  It's an example of the Ouija Board phenomenon, as I think of it.  I WANT her to be saying certainly things, and so maybe my mind assigns that meaning to sounds that don't really mean that.  Or maybe she really does say meaningful things in a voice that's hard to understand.  This one was a case of something I'd love almost more than anything---for Janey to be playing with a doll, for her to have an imaginative life like that.  The very fact I was asking her the questions about the doll shows that.  And the human mind is good at making the world what it wants the world to be.  So did Janey mutter something at random and I heard "Elizabeth"?  Or did she say that?

I couldn't get any more from her about the subject.  She just went back to playing with the doll in her favorite way to play with anything---biting on Elizabath or Not-Elizabeth's foot.  But she was having a great day, and in general was alert and happy, so who knows?  Maybe sometimes we have to play those games with our mind.  Maybe that's part of how language happens---the first "Dada" and "Mama" might not really be those words, but we make them so, and they become meaningful.  Maybe I shouldn't care.  Maybe I shouldn't be so determined to make sure I'm never being fooled.  Maybe I will find Elizabeth and put her in bed with Janey and just feel happy, for now.

The storm and the screaming

We are in the middle of what the weather people keep reminding us is an historic storm here in the Boston area.  I was skeptical, but yes indeed, it's pretty bad looking out there, and they keep saying it's going to get a lot worse.  Driving has been banned, and it's a little cool looking at the major road we live on almost empty---like a tiny taste of living on a back road for just tonight.  I'm able to enjoy the view and the storm because Tony made it home.  He was away all week, and had to fly back into Boston today, which was a very, very iffy proposition.  He got an earlier flight than he planned, and made it home around 1 pm.  I was thrilled to see him.  Janey didn't have an extra bad week, but being a single parent even for a week of the three kids---it's more than I can do.  Or I shouldn't say that, because if I had to do it, I'd do it.  I'm being just like the "I don't know how you do it" people.  But I'm glad I don't have to do it.  It's very hard.  I don't get a break in the night when she wakes, I don't have some to ask to watch her for a while so I can rest or work, I don't have someone to laugh instead of cry with, I don't have a co-worker in the incredibly tough job that is Janey parenting.

Janey missed Tony.  It's hard to say how she feels, exactly, about him being gone, but I tried to prepare her, and then, throughout the week, remind her as I picked her up at school that he was "gone on an airplane trip, but Daddy will come back"  I made up a few songs, and repeated the basic message as much as I could---Daddy is gone for a while, but he will come back.  Today, when I knew he'd be home in just a few minutes, I told her "Guess who is coming home from their airplane trip?" and she said "Is it Daddy?"  I was thrilled with that.  I haven't heard her ask that kind of question before.

She was very happy to see Daddy, but within a few hours was screaming more than she had for a while.  I'm guessing it's a few things combined.  The weather is weird, and she must see that.  She was excited to the point of overexcited to be with Tony, and that can turn fairly quickly into overwhelmed screaming with her.  She also probably expected them to go out someplace right away, as they often do---an exciting trip to the store or something---and we are banned by law from going anyplace right now!  A little part of it might have had nothing to do with Tony.  She was playing for the first time in a while with the talking robot doll I got her for Christmas, and the doll, Serefina, says "If you're there, SAY SOMETHING!" which she kept repeating.  I asked her if that was scaring her, and told her we could put the doll away, and it might have been coincidence, but that seemed to calm her down.  I don't know if she totally gets that the doll isn't alive, and by coincidence, she's been watching Toy Story lately, which could possible put the idea of living toys in her head.  Who knows?  It's like a complex guessing game or mystery figuring out what is in her head, and one that has no answer key, so I never know for sure if I get it right.

We'll be riding out the storm for a few days here.  I hope we get through it without too much insanity.  I'm very thankful we're all together and warm and have enough food to last us.  Hope anyone else in the path of this winter monster does too!

What we're gonna be

There's a line in one of my favorite songs by one of my favorite singers, Don Williams, that says "I guess we're all gonna be what we're gonna be"  It sounds like a simple statement, but as time goes by, it strikes me as one of the most powerful and true statements out there, especially when it comes to raising kids.  Your kids are who they are.  They are going to be who they are going to be.  We can ease the path for them, we can help them adapt who they are to this cold world, we can teach them coping techniques and give them ideas and help, financial and emotional, we can give them a soft place to land, but we aren't going to change who they are.  

This was brought home to me in a very good way yesterday, when William stopped me just before I left to pick up Janey and showed me the certificate he received at school, stating he was going to be the valedictorian of his high school class.  To say I was proud is to put it as mildly as it can be put.  I was out of my mind proud, in tears proud, overwhelmed with emotion proud.  And my mind did one of those things that usually only happen in movies.  It did a sweep back on William's life.  I saw him as a premature baby, a quirky little fellow, a kid who had trouble adjusting to school, a kid that took some time to find his place in the world.  Then I saw him in high school---working until 2 am on homework, often, striving for excellence every single second.  And I saw---it was all him.  I had very, very little to do with it.  He did the work.  I can honestly say I never once helped him with homework after about 2nd grade.  Once Janey was born, a bit after that, in some ways, he raised himself.  We gave him a bed, food, love, but we in no way directed his schoolwork or insisted on him working.  Instead, we often begged him to take breaks, to not knock himself out quite so much.  But he had his own goals, his own personality, and that is what makes me so proud---that he set his own agenda, made his own dream and then followed it.

When it comes to Janey, it's harder to let myself believe that she will do the same, but I do, in a deep part of me, believe that she will.  It's unlikely she will do it in the way William did, but she has things that drive her, just like William does.  When she wants to know how to do something, she figures it out.  I watch her sometimes now with her hands dancing over the iPad, or picking the exact episode she wants on Netflix, or finding all the ingredients to the dish she wants Tony to fix, or finding a way to ask me for the song she wants to hear.  None of those things came easily to her, but she had goals, even if she didn't think of them that way.  She wants to control her world, her activities, what she hears and sees and does, as much as anyone does.  We by necessity have to hold her back, often.  We can't let her use the stove, as I think she longs to, we can't let her go outside and explore in the freezing cold, we have to cut off her TV viewing at  times.  But she is showing us her way, and like with William, I think a lot of parenting is stepping out of the way as much as is safe and healthy and possible, and letting her work toward what drives her.  The autism makes this tricky.  I think of it as a handicap, not in the old way of handicapped kids, but in the way of a race horse or a golf player---something that she has to work against.  This might not be totally politically correct to think---I think I'm supposed to see it as a part of her, but I don't, always.  I see it as part of her own individual path, something she must work around.  It's a lot bigger than what most of us are given to work around, and in the end, it will limit what she can do.  There's no getting around that.  But it won't stop her from becoming, as much as she can, who she is.

I am proud of all three of my children.  They have different abilities, different goals, different needs, but that is what makes life interesting.  They are all gonna be what they're gonna be.

The gradual changes---negative and positive

I read a short story at some point about the end of the world.  It happened on a Thursday, with a flash of blue light and a strange sound, but people went on with their lives for a while.  Things gradually got weirder and weirder, and about a week later, everyone realized the world was over and faded away.  The reasoning was that the end of the world was just too big a change for people to take in all at once, and so the mind absorbs it slowly, over a bit of time.  Now, having a child diagnosed with autism is IN NO WAY the end of the world.  But that story always struck me---how our mind can't take in all of a big event at once, can't pick  up on all the changes it brings.  I was thinking about how we realize how autism has changed our lives gradually, over days and weeks and even more, over years.

First, the negative.  You might not want to read this if you have a child just diagnosed.  You need the gradual time to process these changes, to have them not come as a blinding shock.  But if you've had a few years to live the autism life, you probably know them.  Your life is vastly changed by your autistic child, every single part of your life.  There are the little things you can't do any more, or can't do with ease---sleep all night, go on trips, eat out, have casual get-togethers with other families, eat a meal as a family calmly, have your dream Christmas, keep up with hobbies, go out with friends...pretty much every little pleasure you used to have is changed drastically.  And there are the big, big things you can't do.  You can't count on a future without a child to care for.  You can't assume your child will go to college, or finish high school, or learn to read.  You can't assume your child won't run out the door, into the street.  You can't count on them keeping themselves safe.  You can't relax.  You can never, ever again totally relax.  You can never, ever again be a normal, regular, mainstream family.  You are changed, for life.

You might read this and think---there are positives?  But there are.  They might be more subtle than the negatives, but they are there.  They take longer to see, sometimes.  But as time goes by, you will find them. You learn the true meaning of not sweating the small stuff, and to be cliched---that almost everything is small stuff.  You find yourself chuckling over the things other people worry about, the things you used to worry about.  Your child is having trouble mastering long division, or isn't scoring at the top of their class in reading?  And you are upset over that?  But your child can talk, has friends, will live on their own some day?  So what's the problem?  That's a freeing feeling, especially if you have other children.  Both my boys have said to me that they realize how little we pressure them compared to other parents.  To us, they are miraculous.  We don't sweat the Cs.  Next, you realize how many truly good people there are out there.  There are people devoted to your child in a way that goes far beyond any job or paycheck.  I have met more wonderful teachers, therapists, paraprofessionals, principals, and also more fellow parents of special needs children that are amazing people than I ever would have known or guessed without Janey.  Having a challenging child introduces you to people up to the challenge.

The last positive is a change that has occurred in my heart.  It's hard to write about, because it involves admitting I didn't used to feel the way I do now.  I remember when I was first pregnant.  Tony and I talked about what we would do if we had a child with Down Syndrome or other issue that caused intellectual disability.  We agreed we would most likely put the child up for adoption.  We thought, we truly thought, that we could not handle a child with that kind of disability.  I felt, in my heart, that children like that were a tragedy.  It makes me cry, to think now how I felt.  Now I see the children at Janey's school with Down Syndrome, the other children with autism, the children with various other challenges, and I can see them as the amazing people they are---people with as much value and personality and importance as any other child. I still wish Janey wasn't autistic.  It's not an easy life, for her or for us.  But as for her being a valuable, lovable person, a person worthy of respect...I am there.  It took a while, but my heart was changed.  I don't measure people by yardsticks like academic tests, or income, or accomplishments any more. That change took a while to come, but I am grateful forever to Janey for bringing it about.

Mouthing

Janey puts everything in her mouth.  This is a behavior that hasn't gotten a bit better over time.  Lately, it seems worse.  If she gets a new toy or stuffed animal, the absolute first way she explores it is by putting it in her mouth.  Researching this, I found most toddlers stop the mouthing by around age 2.  That's why there's usually a 3 and under choking warning on small toys---because by age 3, the mouthing is not as much of a problem.  Of course, Janey lives in a 3 and older world.  It would be literally impossible to keep every single small item out of her reach.  She couldn't go to school, the boys couldn't have things they need for school, heck, even clothes for an 8 year old have small parts.  Knock on wood, Janey haven't ever choked on anything, and she doesn't seem very inclined to swallow what goes in her mouth, except food.  She does like to chew on things like pieces of plastic or pieces of paper, when I'm not looking, but she's also good about taking out what is in her mouth as soon as I ask her.  Still, it's a big problem.  It's one of the reasons I always have to stay alert and keep an eye on her, just in case.  And although we've been very lucky so far, that is no guarantee that someday she might have a choking issue.

I looked for theories as to why kids with autism sometimes are mouthers.  One idea is that the mouth is hyposensitive---under sensitive, and they are seeking out sensation.  That makes a little sense.  Janey does like hot foods and spicy foods, and she will eat things with textures most kids avoid.  Another thought is it's just a very delayed developmental stage.  Janey is at a toddler stage in a lot of ways, so I guess that could be it.  I think it might have something to do with her teeth, too.  She's losing teeth here and there, and I know that can make your mouth feel odd---a little different every day---and she might be wanting to explore the new tooth arrangement often.  It also might just be a habit.

Usually, the mouthing is not actually eating non-food substances, not actually pica.  But occasionally Janey will try to eat paper.  I can relate to this a little.  As a girl, I was drawn to eating paper long enough that I can remember doing so.  Unlike Janey, I knew I wasn't supposed to, and hid doing it.  I can remember it being a texture thing---the paper just felt good to chew.  It's kind of cool in an odd way to be able to relate in that way to one of Janey's odd behaviors, even while I am telling her firmly to spit out that wad of paper.  I still am hugely drawn to chewing ice, even though I know it's awful for the teeth.  I know that, but still, I can't help wanting to crack that ice with my teeth.  I try to use that in dealing with Janey and mouthing.  I'm not going to try to get her to never put things in her mouth.  It's more I want her to have a lot of safe things around to put in her mouth.  I buy big bags of baby toys at the thrift store I go to, and wash them in hot water.  There's always a baby toy around, and when Janey starts mouthing inappropriate things, I try to hand her a baby toy to chew.  I resisted doing this until a year or so ago, hung up on the "age appropriate" bit, but now, I don't care.  I care about developmental appropriateness, if that's a thing!  Hopefully, someday, the mouthing will end.  For now, it's another challenge in making the world as Janey-safe as I can.

How autism has made me a worse mother

Somewhere in Internet Land, I read recently a post that talked about how having a child with autism had turned someone into a Supermother.  That set me off on a big thinking marathon.  My first reaction was born of growing up in a time and place where you just didn't say things like that.  Even if you had a thought somewhere in the back of your mind that you might be somehow slightly super, you pushed that away---that kind of self-promotion was just plain wrong!  Then I thought about myself, and thought even if I didn't have that aversion to self-promotion, I would in no way say that autism has made me a super-mother.  I took it a little further, and realized that autism has made me a worse mother than I otherwise would be.  I'm not saying that looking for backwards praise in any way.  I know some people might think just by getting through the days with a low functioning child with autism makes you a better parent.  But I would disagree, and here's some reasons why...

First of all, I'm tired all the time.  Being tired, without any other factors, makes me less effective as a parent, both to Janey and to my boys.  I don't think anyone operates better when they are tired.  I am too tired often to do the kind of things I want to do with my kids---to be creative in helping Janey learn, to work with the boys on projects or homework, to take them interesting places, to volunteer at their schools or to fix them wonderful lunches, or, on the worst days, even to just sit and listen to them.  When I have a moment, I want to sleep, or to do something mindless to relax.  

Then there is the time factor.  So much of the time I have is taken up with the types of parenting tasks that are necessary, but not fun or nurturing---changing pull-ups, cleaning up spills, washing wet clothes, just plain watching Janey to make sure she doesn't run off or put something she shouldn't in her mouth or otherwise hurt herself or others.  Every minute I spend doing that kind of thing takes away a minute I could be reading to her, or discussing ideas with the boys, or watching a movie with them, or just doing the kind of family activities we never do any more.

I'm also not a great mother in terms of even those menial tasks.  I'm not a good housekeeper, because when I have time to be, I'm exhausted, or I choose to steal those moments for something else.  I don't have the mental energy to think up great meals.  I don't always keep up with the laundry like I should.  More times than I would ever want, the boys are left rummaging in the dryer for socks or uniform shirts.  I am in no way a model housewife.

The big issue, though, is that I don't think autism plays to my strengths.  I always think of that inspirational fable about God handing out special needs kids, and picking a very special family to give kids with disabilities to.  If that story was true, I would think there was a mistake made.  I know I have a lot of parenting strengths.  When the boys were little, I don't think there were many kids that were read to more, or talked to more.  I have a huge store of patience for questions and long discussions.  If they ever wanted to talk to me about something that was bothering them, or excited them, I was there for that.  I delighted in their personalities.  I loved watching them grow up, and I still do.  But I wasn't a baby person.  Those early years were tough for me.  I was in a hurry for them to grow bigger, to engage with me mentally.  With Janey, the early years are hugely extended.  I am in some ways still raising a toddler.  I'm stuck being the mother of a child in an early stage.  I love Janey more than life itself.  I have accepted who she is, and I will be the best mother I can to her always.  But I can't lie to myself.  I wish, I wish so very much, we were reading through the Little House books together, or talking for hours about dolls she might want or the social interactions of second grade or even that we were fighting about what clothes she could wear.  I am good at those things.  I love those things.  

And so, autism has not made me a Supermother.  Autism isn't magical.  Life isn't like a kids' book, where if something tough happens, there is always a silver lining.  You don't get automatic compensatory powers in life.  Autism is just autism.  I will always do the best I can, but I won't pretend that it's easy, or that I'm better for it.