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Thursday, February 28, 2013

Janey's various looks---pictures!

Janey in her happy mode.  I love this contented look.

Janey and Daddy eating at a friend's house.  Her cheeks are like mine---they get red very easily!

Janey got at the camera.  These pictures she takes of herself intrigue me, because I think they might show her inner self more than ones that I take.  She takes them because she wants to, when she wants to.  Her hair is crazy, the way she likes it, and she looks curious, like she's trying to figure out how the camera works.

Wednesday, February 27, 2013

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.

Frantic reciting

When I went to get Janey at afterschool yesterday, I could hear her coming down the hall from a long distance.  She was reciting the Pledge of Allegiance, in a loud and what I recognized as a frantic voice.  As soon as she finished it, she started again, sounding horrible, like someone trying very hard not to cry.  She kept saying it all the way to the car, and the first part of the ride home, getting increasingly upset.  It's a mode I've seen in Janey a few times before, but not for a while---her stuck mode.  She used to even call it that---she'd cry out in the middle of these episodes---"I'm stuck!"  I imagine it's like when you get a song stuck in your head, but with Janey's brain setup, it's far worse.  You can't distract her.  Any attempt to do so just results in her getting louder and more frantic.  I finally used the only technique I've found to work---giving her something else to recite.  I chose The Lord's Prayer, which might strike people as a little sacreligious or a little bit of an odd choice for an agnostic, but there have been times in my life when reciting that prayer in my head has calmed me down.  I figured it was an opportunity to teach her something potentially calming, and at least it would give her something else to say.  I've recited it to her a few times before, and she has said parts of it, but this time, she learned it fully in about 5 minutes.  We said it back and forth the rest of the way home, and it did seem to calm her some---not because of the content, I think, but just because it was something new.  She likes the "Amen", and she likes the daily bread part---maybe bread is something she can understand there, and she certainly likes her daily bread.

This all is another example of what Janey can do very easily---learn new things by rote.  It comes completely naturally to her.  Too naturally, maybe, because then the recitations get stuck.  It's also an example of the seat of the pants autism parenting I so often have to do.  I've never found a handbook for how to deal with a child that is stuck reciting the same thing over and over and can't be distracted.  I don't think it's a common enough problem, even maybe in autism, to have a "correct" solution.  It's one of those times I feel utterly alone.  I don't know what to do, I don't know if I'm doing something helpful or not helpful.  I only know what sometimes seems to work.  The whole episode left me drained.  There are a few other things going on lately that are a little scary, and I just fell apart a bit last night.  I had a defeated feeling---a "what the heck does anything really matter" feeling.  I don't have a cheery ending for this post.

Tuesday, February 26, 2013

Heavy Metal Parodies vs. Identifying Shapes

This morning, Janey was in a talkative mood.  She danced around the house, repeating anything we said and bringing in her own quotes and songs.  It's fun to listen to her when she's like that.  Then, she stopped and sang "Is he dead or evil?" over and over and over.  For those of you who might not be as familiar with heavy metal music as I am (and you are lucky indeed), that was a parody of a part of "Iron Man" by Black Sabbath.  The actual line says "Is he alive or dead?" but Janey certainly captured the essence of metal music. She hears it all the time, due to William being an extremely devoted metal fan and also a budding metal artist, who has recorded three of his own metal albums full of his own songs.

It struck me that although that was cool to hear, it wasn't totally unusual for Janey.  She often plays around with songs and gives them different lyrics.  It's something we all do a lot around the house, for whatever reason, and it's something I do to teach her things---put the steps to a song, or the take-home message to a melody.  Janey can play with music with ease.

That contrasts with some other skills, skills the school and us at home have worked with her on for years, and which she still has trouble with.  She can usually name a circle, now, and her ABA specialist, Mr. Ken, is going to start working with her on generalizing that skill, to name things that are circular, like pizza or cookies or a full moon.  I'm glad she's learning this, and its great to see her achieve.  But it's slow going.  She's been learning shapes for 6 years now, and she hasn't mastered them.  However, some things she learns in an instant, or quite easily.  She learns a new song upon hearing it once or twice.  If I put a new app on the iPad she likes, she immediately knows where the icon is, how to enter it, and either knows or quickly figures out how to play it.  I never sat down and showed her how to raise the sound on the iPad, or to pick shows on Netflix, or how to do many other things she does on a daily basis.  How is it that some things are so easy for her to learn, and some so hard?

Motivation is part of it, but not all of it. She can be incredibly motivated to earn a reward, but still not be able to do the task that earns it.  And her limited speech skills are also not something that can explain all of it.  Limited verbal skills don't usually lend themselves to parody songs.  It just seems like her mind is a patchwork of ability and lack of ability.  It's what makes her mysterious, and what I think makes intellectual disabilities different in people with autism than in other people.  Other kids seem to be able to learn with a slow and steady approach.  It takes them longer, but they get there.  Janey seems to learn in jumps, or not at all.  It feels like I can't teach her, because she doesn't learn what I ask her to learn.  She learns what she decides to learn.  It's frustrating, but at times also fascinating.  I don't see it as there being all kinds of unlockable areas of her brain, particularly.  I see it more as a very unevenly planted garden.  You can water and water, but you're not going to get flowers where none were planted.  However, where they were planted, sometimes they will grow just on their own, without a bit of help from you.

Thursday, February 21, 2013

Two hours of morning

I wake at 6 am, or rather Janey wakes me up.  That's nice and late compared to her standard waking time, and I am full of energy.  I'm determined this day is going to be different than the rest of the vacation days.  This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey.  I look at my yesterday self with scorn---why do I get so lazy?

Now it's two hours later.  Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything.  As is often the case when I am overwhelmed like this, I turn to here, to this blog.  Thank you, my dear readers, for listening!

What wore me out?  Well, lots of things.  A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed.  None of it is easy.  She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs.  She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it.  She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch.  And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.

A few random times other than those, Janey is angry at me.  She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious.  I hold her at arm's length, and she moves in with her head to headbutt my cheeks.  It's truly a bit scary.

Finally, a little break.  There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store.  I tell you, that walk feels like a huge treat.  I don't realize some days how isolated I get with Janey.  Just being in a brightly lit store full of assorted foods feels strangely thrilling.  I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees.  The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.

And now it's just past eight, and I'm about done for the day.  Any energy I had is spent.  I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have.  It's the get-through-the-day-with-all-of-us-alive type energy.  Once again.

Wednesday, February 20, 2013

Magical Mama

This morning featured a scenario that plays out over and over again with Janey.  She asked me for oatmeal for breakfast.  We had one little packet of it, and I made that for her.  She ate it eagerly, and then, again, asked for oatmeal.  I told her we didn't have any more.  Within about a minute, she came back over, saying "Want oatmeal!"  I again told her we were out of oatmeal.  Over and over she came back and asked for it, varying things a little by sometimes saying please, sometimes saying "Want oatmeal right now" and sometimes just bringing me a bowl and looking sad.  I took her a couple times to the bin where we keep the oatmeal to show her there wasn't any, I offered her several alternatives, I told her we'd go later to the store and get oatmeal, but as always, none of that worked.  She seemed totally convinced that if I really wanted to, I'd have some oatmeal to give her.

It made me think that Janey probably thinks I can do anything I want.  Hey, sometimes I tell her no to more chocolate or candy, and then in a few minutes, suddenly I give in and give her more---so what's different about the oatmeal?  People can say no, and then it changes to yes!  Or it might not even be that complicated.  It might just be that she truly pictures that I can make things happen, make things appear.

The theory of mind bit comes in here.  I am quite sure Janey doesn't get that what is in her mind isn't public.  She'll often come over to me with a remote, and I'll say "What do you want to watch?" and she'll say "That one!"  I say "Which one do you mean?  I don't know what you are thinking!" and she'll get increasingly frustrated---saying "THAT ONE!  WANT THAT ONE!"  In her mind, I'm sure it's perfectly clear, and she doesn't get that I don't know what she means.  Sometimes, of course, she does ask for things by name, but I think that's when the name is coming easily to her verbally.  Often, words don't, but in her head, there's a picture or in her case, more likely, some bits of dialogue or music, and she figures that's good enough.  This probably isn't helped by the times I really do know perfectly well what she means, and still try to get her to say it.  She'll bring me a soda bottle and a glass and look at me beseechingly, and I'll say "Tell me what you want" when it would be obvious to anyone what she wants.  So she might figure that the pesky insistence on saying out loud what she wants is some kind of quirk of mine that I pull up at certain times.

When Janey is crying or screaming or hysterical, I'm pretty sure then too she thinks I know what is wrong, and am just not helping.  And even if what is bothering her is something I'd have no way to help, like a noise on the street or it being the weekend when she wants to go to school, she doesn't get that.  I could help, in her mind, if I wanted to.  I'm just not, for whatever reason.

I need to try to keep this view in mind when talking to Janey.  I think I'm going to try not to ever pretend I don't get her when I do, just to get her to say the word, and I'm going to try to think of a way to tell her when I can't do or know something.  I had some luck a few times with a song I made up for the car when she would ask for things in the car I couldn't get, like toys that were at home or for me to cook bacon or something.  I'd sing "IT'S make bacon in the car" repeated 3 or 4 times, and after a while she'd quote that.  Maybe if I keep my message consistent, she might, if not understand, at least know what to expect from me.  I'm going to try.

Monday, February 18, 2013

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

Sunday, February 17, 2013

A room full of strangers

William had an overnight at a college that will remain nameless on Friday night, a program for admitted students and an interview for a great scholarship.  We drove up to pick him up on Saturday.  Usually, in a situation like that, Tony would go and I'd stay home with Janey.  It's just easier.  It's impossible to know how she'll react to new situations, and we like times like that to focus on the boys, not on her.  But I've been feeling left out of the college process, and I really wanted to see the college and to get out of the house a little.  So we took Janey with us.

Overall, it went well.  She enjoyed the ride, until the end (she seems to have a 90 minute per day limit on car rides---as soon as you pass that, she freaks out), she loved walking around the campus and she especially seemed to like the big room in the admissions office where we waited for William to be ready to go home.  It was a spacious room, with big chairs and with lots of windows, and for a long time, she just sat there in delight.  She was smiling her huge smile, and to my eyes, not being very noticable.  But still, we got stares.  I tried to tell myself that is was because she was 8, at a college, and beautiful.  But there were other young kids there, and they were not getting stares.  No, it was because at this point, she just looks different.  She doesn't act as you expect a child her age to act, even when she is not making a sound.  And then, occasionally, she makes her happy sound---the long "AHHHHHH" sound.  We barely notice that sound, but other people do.  I sat there trying to feel like an anthropologist, just observing the stares.  They weren't especially friendly stares.  They were pretty confused looking, or at times, a little annoyed.  This was a big day for a lot of these parents---their special high school seniors going to a big college event.  It was not a place they expected to see a little autistic girl.  It wasn't like there was any speech or event she was interrupting---it was just a waiting room.  But still, she wasn't part of their expected background.  At one point, she got very excited and jumped up and ran toward the door.  We did our usual thing---the very firmly and loudly spoken "STOP!" and ran after her.  That got the whole room looking.

So---what is the take-home message here?  I don't know.  I'm not going to keep Janey out of the public eye.  This was not a case where she was truly interfering with or disturbing anyone.  And my attitude I should have is---who cares?  Let them stare!  And I am usually fairly okay with that.  But somehow it bothered me more yesterday.  It felt like I couldn't do a normal rite of passage---visit a college my son was interested in.  Of course those starers were not stopping me, but their looks said a lot.  One woman especially, at the desk, just did not take her eyes off Janey.  At one point, she was going around the room talking to parents, and giving them little bracelet flash drives.  She avoided us.  She walked right past us.  That got my dander up a little.  Finally, I'd had enough of being in there, and took Janey to the car.  She was at the door.  I got passive-aggressive and said "What are those?" as she was holding a bunch of the bracelets.  She said "They are flash drives.  For ADMITTED STUDENTS"  Well, she'd been giving them to a lot of parents.  But I guess she assumed if we had a child like Janey, we certainly wouldn't have any child up for their big special scholarship.  Which we do.  Which I wanted to point out to her, but I didn't.

I guess I want to say---we are out there---those families with a special needs child.  We are everywhere.  Get used to us.  We aren't trying to interfere with your lives.  We are exquisitely sensitive to any situation where we might be disturbing you.  But you might still have to see us---in waiting rooms, in stores, at parks.  We aren't going to hide our kids away.  We don't bite.  Give us a friendly smile.  Talk to us.  You might find out our kids are pretty darn interesting and cool people.

Here's a picture of Janey enjoying the campus, just because..;.

Thursday, February 14, 2013

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.

Tuesday, February 12, 2013

Not a good day

Janey is not enjoying this 3rd snow day and 5th day off in a row from school.  She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs.  This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish.  That is not working.  Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.

I did keep her happy for minutes here and there.  We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted.  She caught on right away, and got lots of hugs and nice words.  Later, we did workbooks.  I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing.  It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them.  Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them.  Janey learns so much from videos, and I figure me doing something live might teach her even more.  It kept us sane for a while, anyway.  I'm pretty good at preschool workbooks, if I do say so myself.

Overall, though, it has been a day of screaming.  At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of.  But there does come a point of just not being able to take it.  Thankfully, I have Tony and I have the boys.  And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.

I feel like a failure after a day like today.  I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort.  Of course, Janey isn't always that way, but it's always a minute away from being that way.  I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.

My 15 minutes are probably almost over.  Tomorrow will be better.

Monday, February 11, 2013

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.

Sunday, February 10, 2013

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.

Friday, February 8, 2013

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!

Wednesday, February 6, 2013

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.

Tuesday, February 5, 2013

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.

Sunday, February 3, 2013


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.

Saturday, February 2, 2013

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.