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Friday, June 28, 2013

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.

Tuesday, June 25, 2013

The Noah's Ark Book

Lately, Janey has been asking me to read her books.  Or if sometimes not exactly asking, at least listening willingly when I read her books.  This is quite new.  Her school has a reading contract due every Friday, where a parent has to write down four books they have read to their kids during the week.  With William, years ago, this was very easy---I had usually about 50 books to choose from, and although Freddy wasn't quite as into books, we still certainly always read more than four in a week.  I love to read to my kids.  It's just about my favorite thing to do.  But with Janey, although I always had read her the four, and almost always more, it often was more like me reading the book while she didn't listen and ran around the house.  Now, though, she is sitting by me, listening and even often gesturing me to point to the words as I read.  That just about freaks me out with happiness.

A few days ago, I was reading her the Lucy Cousins version of Noah's Ark.  Lucy Cousins is the artist behind Maisy the Mouse, and I love her books.  On a few of the pages, there is a big spread with pictures of all kinds of animals.  When we got to that page, on impulse I started asking Janey to point to the animals.  Well, she did.  She pointed to every last one I asked for, and that included such animals as flamingos and scorpions.  She pointed to them quickly and easily, eager, I think, for me to stop asking questions and just read.

When Janey does things like that, my emotions and thoughts run wild.  I am very proud and happy, of course, but I also am frustrated.  Janey obviously knows so much more than she lets on.  WHY does she talk so little?   Why can a day go by and you'd have no idea she knew such basics things as her brothers' names or any words beyond her few preferred ones?  How can she knows what a lizard is, what a ladybug is, but never, let on?

I don't understand why Janey's speech is so restricted.  She CAN talk---the fact that she can recite whole poems and, when push truly comes to shove and there is no way to get around and she really needs to ask, can she ask us by name for such foods as pickled cabbage and duck sauce?  It seems like every new word she actually uses verbally without it being part of a recitation costs her dearly, and she needs to preserve her savings.

On my better days, Janey fascinates me.  I wonder what it's like in her mind.  I wonder how it feels to have all that knowledge floating around there and usually no way to get it out.  But on my less better days, she breaks my heart.  I know how frustrating her life must be, far more frustrating than it is to be me, on the outside, wishing I could get in and truly understand her.

Monday, June 24, 2013

The Pajama Game

Traditionally, Janey hasn't cared a great deal what she wore.  Once in a while, she'd get attached to a certain shirt, especially at one point her "rainbow shirt", which was a tacky thing with sequins making up a rainbow.  But usually, she just wears what I put on her.  Lately, though, that isn't the case.  Janey has become hugely attached to pajamas, and most especially, her "snowman jammies", a fleecy nightgown, very wintery, with snowmen on it.

All weekend, Janey wanted to wear her snowman getup.  It was a fairly hot weekend, with yesterday close to 90, and it was painful for me to see her in fleece.  But I gave in mostly.  I cruelly insisted on regular clothes when we had to leave the house, but inside the house, I let her wear the nightgown.  By midday yesterday, it was covered with food, and I had to wash it.  That was traumatic.  Janey kept searching for it, and throwing a complete fit when we tried to substitute other nightgowns, or, God forbid, regular clothes.  When Tony was going to take her to the store, she had reluctantly settled on a long ago outgrown pajama top.  He put shorts under it and was heading out the door.  I stopped them, and tried very hard to convince them both that a too small pajama top was not suitable wear for out in public, but Tony said "it took this long to get her into something---just let it be!"  I realized he had a point.  The top covered what needed to be covered, was fairly clean and at a distance might not look like pajamas, so I let it go.  She fell asleep in it later, so I didn't have the nighttime snowman jammie fight.

I think the jammie obsession is part of Janey's need to recreate situations that comfort her.  Friday night, once she got in the nightgown and I lay down with her to get her to sleep, she has the most wonderful look of comfort and happiness on her face, and she actually looked straight at me and said "together again!"  It was great.  The jammies are part of the stage setup she uses.  They are part of how she creates a comfort zone for herself, and I do respect and understand that.  But....

I was worried about dressing Janey for school today.  I managed to get her to have a bath, which has started to be another battle, and then when dressing her I put on my very best stage banter, which I have gotten good at over the years.  "Hey, look at this nice shirt!  It seems like a jammie shirt to me!  It looks very comfy!  And WOW!  This skirt seems just like a jammie skirt!  It has a nice elastic waist!  It looks so nice!", all the while dressing her as fast as humanly possible, hoping to get away with it.  So far so good.  Janey is watching her usual 7-7:30am dose of Curious George, still dressed for now.

In a way, it's cool to me that Janey has started to notice what she wears.  Although I'm not much of a dresser myself, I enjoy clothes---I enjoy picking them out for her, I like comparing brands, I just plain like clothes.  I've often tried to interest her in clothes.  But of course, like most things with autism, now that she is noticing them, there is her own twist.  That's my Janey.

Sunday, June 23, 2013

Facebook Group

Just a little note to say I formed a Facebook group, which can be found at

I thought for a long time before forming a group, because I've always kept Facebook a little separate from my life as Janey's mother, kind of as a refuge from autism.  But I realized I really do want a way to be in touch with all the wonderful people I've met through this blog, and a way to get to know more of them.  I also realized I'd like to post more about Janey than I thought some of my friends might be interested in, so I wanted a separate place to do that!  Please feel free to join this group if you weren't already invited---I could only invite people who had friended me on Facebook.  I promise I won't send out millions of posts!  I feel a little funny about forming the group---it feels kind of like self-promotion or something, which I don't want to do, but I decided my desire to be able to interact more with my friends from all over who read this blog was more important than that fear!  And if you read this blog, I consider you a friend!

Saturday, June 22, 2013

A wonderful award

Janey's end of the year awards ceremony was Friday.  For one of the first times since I've been a mother of a child at school, I was a Very Bad Mother and skipped it.  I had what I felt like were reasons.  I spent the morning at Janey's school, not with Janey but with William!  He was asked to give a speech at the 5th grade graduation, as a graduate of the same elementary school Janey goes to (Henderson Inclusion) who is now going to college.  Here's a picture captured from the video of him.
I was so proud of him, and he said being at the school reminded him of what a special place it is.  We saw Janey in the hall, and she responded to seeing William as you would to seeing something that can't really be there---by pretending he wasn't there and hoping the weirdness would go away!  She did give me a hug.  But by the time I got William home, I was tired out of my mind---the pre-lupus or pre-scleroderma or whatever it someday turns into makes me very tired, and I take a nap most afternoons.  And I also just sometimes have a very hard time with events at Janey's school where I see the sharp contrast between her and the other kids around her.  Even though it's an inclusion school, most kids there do not have any disabilities, and the ones that do are mostly all higher functioning than Janey.  I love that for an educational surrounding for her, and so I should not mind it when it's part of a show, but this time, I decided to give in to tiredess and sleep instead.  Tony picked Janey up at the usual after-school time (last day of afternschool, darn it all!  It has been a lifesaver this year!)

But when I saw the award Janey brought home, I wished I had gone to the ceremony.  It was an award for Declamation!  And it was perfect.  It was an award that was REAL---for something Janey really does very well!  They memorized a poem this year, Knoxville (here is it if you are interested), and Janey had it down cold, and could say the whole thing, completely, and with expression.  If there is is one skill Janey truly has, it's declamation!  I knew how much thought had gone into that award, which reflected the thought that Janey's teacher, therapists, aides, support staff---everyone!, gives Janey every day.  There was something about that award, though, that really got me.  I started crying when I saw it, because it was an award for something Janey did well even when putting her up against "regular" kids.  It made me think how Janey really, truly does have strengths, and that her school and her teachers allow them to shine.

I am so proud of all three of my kids.  They all have their own areas to shine.  All three of them have been helped and loved in their own way by the Henderson School, and I want to thank the school and everyone who is part of it.

Thursday, June 20, 2013

Sally Cat and Regression

Sally Cat showed up today.  She does, now and then, I guess when I am in need of a good cry.  She is a pink stuffed cat that meows when you push on her.  She was bought when Janey was 2, on a trip to the Gap.  Janey asked for her, and although she needed a new stuffed animal not at all, I could tell it would be a battle not to get her, so I gave in.  One of the many things about Sally that makes me cry is that that was probably the last time Janey ever asked for a toy in a store.  I wish I had bought her with enthusiasm.

Janey loved Sally, for a brief period---probably about four months.  She named her herself, when I asked her the name.  I don't know where she came up with Sally, but at the time, I didn't wonder that much, as you know two year old---going through that language explosion and saying all kinds of things.  We took Sally everywhere we went, and she was part of the family, as kids that age get with a favorite toy animal.  Then came the summer of 2007, and the horrible regression.  By the end of the summer, Janey no longer had any interest in Sally.  She couldn't say her name, or much of anything else.

I showed Sally to Janey today, and kind of hoped for a miracle.  I don't do that a lot.  And I didn't get one.  Janey did her not-look looking at her and tossed her aside.  I said "This is Sally!  You used to love Sally!"  No answer, no recognition that she had heard me.  Par for the course.

I don't think much about Janey's first 3 years.  I can't.  I just can't.  If I do, it's too hard.  I tend to remember only the early signs something was wrong, and not the little girl who talked well, when she wanted to.  I think, though, sometimes, about the last visit from the PT who saw Janey in Early Intervention, before they discharged her, saying she no longer needed services.  The PT was great.  She said "Please always stay in touch with me.  Janey is so bright and talks so much!  I can't wait to see how she does at school!"  I never called her.  I never could bring myself to.  I didn't want to see or hear her shock.  It's easier sometimes to pretend that Janey never existed.  It makes acceptance easier, and I do accept Janey as she is now.  Of course, she is the same person she was then, but sometimes, somehow, it's easier to almost pretend she isn't.  I have heard that the notion of changelings might come from autistic kids in the past that regressed, and I can see why.  It's like someone came and took one Janey and replaced her with another, identical looking Janey.

But I won't write about that any more right now.  Even writing about it is too hard.  I put Sally away, where I won't see her for a while.  I would never get rid of her.  She's a keepsake of a time that I do accept isn't coming back.  Sometimes, when I see parents in stores exasperated at their kids for asking for every toy they see, I almost want to tell them the story of Sally, and tell them---buy the toys.  Buy them, because you never know.

Tuesday, June 18, 2013

The credit and the blame

In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion.  I would say almost no-one thinks that any more, thankfully.  Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault.  We didn't cause it.  We might not know what caused it, but it wasn't something we did deliberately or even indirectly.  We don't take the blame, at least on our better days.

I'm wondering, then, why so many mothers feel it is there job to FIX the autism.  We can accept we didn't cause it, that nothing we did made our kids they way they are.  The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism.  However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism.  We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children.  We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.

I am trying hard to not do this.  I'm trying to be consistent.  I know I didn't cause Janey's autism.  I don't know what did cause it.  And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism.  That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.

This is where my older son comes in.  He was also at one point, when he was very young, diagnosed with autism.  That was changed within a few years to an Aspergers diagnosis.  When he was 8, testing showed he no longer fell into the autism spectrum.  When he was 12, we stopped having him on an IEP at school.  Last week, he graduated from high school as valedictorian of his class.  He heads to Brandeis in the fall.  This is where I have to practice what I preach.  I don't take the credit for his "recovery"  I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him.  He did that himself.  It was what was meant to be.  I am proud of him, but I in no way at all take credit for him.  If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.

I believe in autism acceptance, mostly.  And I think that needs to mean an absence of credit or blame.  Janey is who she is.  She is a full, complete, complex person just as she is.  Talking about credit or blame makes her sound like a project, not a person.  The same holds true with William, my older son.  As tempting as it can be to feel we can really change our children, I truly believe we can't.  We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own.  I'm not quite there yet, in fully believing that, but I am working toward it.

Sunday, June 16, 2013


Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.

Wednesday, June 12, 2013

When people can't see the delight

Janey had a physical today.  I like my pediatrician a lot.  He has been very good to my family over the years.  He saw each child on the very day they were born, and it was exciting today to have him see William as an adult, ready to go to college---great to have him see how far William has come, and to have him see the fine young man Freddy is too.  But something bothered me a little about the visit.  I couldn't quite put my finger on it at first, but I think I have it now.  I don't think he can see the part of Janey that is a delight.

To be fair, Janey generally screams all through doctor's visits.  She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like.  He doesn't often get to see Janey happy.  But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!"  Tony and I were excited.  And he was kind to her, but he didn't seem charmed.  When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are.  I know he worries about us.  He said as much, and I think I saw tears in his eyes.  He's a very kind person, and he cares for us.  And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey.  She is probably one of the most disabled patients he has.  She is also probably behaviorily one of the most difficult.  There have not been that many moments of triumph with her.  She hasn't made exciting huge jumps.  She is not a classic success story.

But she is so often, in so many ways, a delight.  And many people do see that.  Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be.  Not always, not even mostly, but often.  She can make us happier than almost anyone when she is happy.  She is funny, she is spontaneous, she is often a blast in her own way.  She can make us despair, sure.  Often she does.  But sometimes she makes us laugh until we cry too.  After the appointment today, we went to get some food.  Tony took her to Burger King, and I went with the boys to a burrito place.  She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!"  We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture.  She knew we found her funny, and she was playing it for laughs.  Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.

I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy.  And it partly is.  She has made our lives often very, very, very tough.  She is not happy much of the time.  She will almost certainly never live on her own, never hold a job, never be able to be unsupervised.  She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully.  But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that.  I know not every can, or will.  To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own.  But I've learned that a child like Janey is not a tragedy.  She is a person, a child, my child I love.

Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself.  The smile in the picture says what I want to say more than my words do.

Sunday, June 9, 2013

Better days, and insights

Thank goodness, the last few days have been much better with Janey.  As so often happens with her, we have no real explanation of why she went through such a horrible period and why she came out of it, but it's great to have our happy girl back.  When she's happy like this, it's hard to even picture how bad it gets when she is so sad.  She hasn't bitten her arm in days (again, knock on wood!) and yesterday she only cried once, for just a minute.  It's been lovely.

I've had a few insights about Janey lately, probably due to thinking about her so much in trying to figure out what makes her happy or sad.  One is how very, very VERY active she is.  She is non-stop movement.  In that way she is very much like Tony, and like my mother.  She doesn't rest---she is constantly jumping, running around, asking for things, wanting to be on the go.  I don't think this is her autism; I think it's just her. The medication she is taking almost always makes kids gain weight, but weight doesn't have a chance on Janey.  Janey was like that from the start.  When I was pregnant with her, a tough troubled pregnancy, I never worried about her being still okay, as she kicked CONSTANTLY.  I used to wonder about whether she ever slept in there.  My boys were not like that, and are not like that.  They are more like me---prone to long stretches of not doing much active.  I realize that this drive to move affects her mood.  She needs to keep on the go, and when we can't, it makes her crazy.  I am very glad Tony understands this.  He instinctively knows when she needs to go outside, to get out of the houses, to do something with movement.  It also explains a little her lack of interest in books and reading.  More and more, we do think she can read, but she doesn't sit down and read, nor does Tony, although he was a great student and an Ivy League graduate.  Reading is too passive for either of them.  Here's a picture of Janey in her usual mode, running and jumping.

The other insight I had is how Janey not only memorizes words and music, but movements and body positions.  This came to me during one of my Total Janey Time attempts.  After school, I went into the backyard with her where we had her wading pool set up.  The day before, I had gotten into the pool with her, and she sat on my lap and played with pool toys.  That day was very hot, but this next day was very cool, but Janey was determined I sit in the pool with her again.  In the spirit of Total Janey Time, I did.  Once in there, Janey kept adjusting where my legs were with her hands, and moving my arms, and pushing me to the "right" part of the pool.  I realized she wanted to completely recreate the day before, and she had a complete memory of how we were sitting that day.  This is something I remember Janey doing way, way back, once I thought about it.  Her first year is often a blur in my mind, but I recalled playing with her at 10 months or so and having her put my hands in different positions, wanting me to play in a certain way that I realized was how we had played previously.  The insight also explains Janey's amazing ability to dance.  She channels any dancer she's seen---copying their moves exactly.  That's probably what led to the most amazing moment pretty much of Janey's life and ours---that day Michael Jackson died, when we put on some of his music and she danced EXACTLY as he did.  I think now she must have at some point seem Billie Jean being danced to, and recalled it exactly.  It must be hard having this kind of recall, because other people don't remember exactly how they moved previously.  I wonder if that causes a lot of Janey's tantrums.  She remembers a good time, tries to get another person to recreate it, and they just can't, and she doesn't know how to explain what she wants them to do.

Here's hoping Janey's good times keep up for a long time, and that I keep figuring her out, a little bit at a time.

Wednesday, June 5, 2013

Pictures without sound

Janey is still having a tough time.  Lots of screaming, lots of fury, but tonight anyway, less arm biting.  She had a few good minutes out in her element, in the back yard, and I thought I'd just put on a few pictures of her, to keep my own spirits up.  I love her so much.  I wish she was happier.

Tuesday, June 4, 2013

Biting despair

Janey developed a new habit about a month ago.  She bites her upper arms when she is angry---mostly the right one, but now sometimes the left too.  It's a horrifying habit.  Her arms are constantly red or bruised, she hurts herself to the point where she is crying for a band-aid, and there seems to be no way on earth to stop her.  

She started it at school during a tough week.  Tony and I saw her badly bruised arm and just didn't know what was up.  I never thought anyone at school was hurting her, because I know they wouldn't, but I thought she might have smashed up against something at school.  I could tell the bruise wasn't from being grabbed or pulled by another kid, because it was only on one side of her arm.  Finally, after a few days over a weekend trying hard to figure it out, Janey got mad and did the biting at home.  It was a little bit of a relief to know what was causing the bruises, but that was quickly followed by a complete lack of ways to prevent it.

For a few weeks, Janey was biting less and we hoped the behavior was just ending.  However, this past week has been very rough.  We've had the sleeping problems, and Janey has seemed endlessly irritable.  And the biting is back---big time.  Now it seems to be the first thing she does when we say no about anything.  She asks to go get ice cream at 2 in the morning, we say no, it's the middle of the night, and she bites herself.  We've tried everything we can think of.  We've held her hands, which works only if we can get to her in time, we've tried putting on an ace bandage so she can't bite as well---she takes it right off.  I bought her hand core biting toys---actually dog toys, because I don't think the average Chewelry or whatever it's called works for SERIOUS biters like Janey.  She just bites them up.  The dog pretzel will hold up to her, and she does like biting it, but it doesn't replace the arm biting.  Somethings seems to compel her to hurt herself, and it's killing me.

Today, when talking to her teachers about strategies we could try, they told me she has also started to bite them now and then.  This is something she's done once in a while at home too.  It's usually done when she is hugging.  She puts her mouth against my chest and then suddenly seems to have an impulse to bite down.  It's hugely painful.  I come down very hard on this---screaming at her as loudly as I can, to startle her and let her know it's completely unacceptable, and this seems to have decreased her doing it at home to once in a long, long while.  But all bets are off right now, with this current trend.  

I worry about biting so much.  I know if she starts biting the kids in her class, that could be something that the school would get pressure to remove her for.  They wouldn't want to---the wonderful aide in Janey's room actually said if they would give Janey a one-on-one aide for the summer, she would be that aide, after having been bitten even, but in talking to the special ed team leader, who does Janey's IEPs, I found out it would be very hard to get that aide at this point.  The leader said that the summer school staff would be well trained to handle biting (in the summer, Janey is with all autistic kids).  I hope that is the case.  She is going to speak to the ABA supervisor for more ideas.  Mr. Ken, Janey's ABA therapist, has been very on top of this too, and called me yesterday to talk about strategies.  Everyone is working on this, but in the end, no-one can really keep Janey from biting.  We have to make her want to stop, and I just don't know how.

In my new resolve to assume Janey understands what is said to her, I've talked to her a lot about the biting.  I've told her I understand she gets angry or scared feelings, and she knows most of the time she shouldn't bite other people, but that she absolutely shouldn't bite herself either---that biting hurts her, that it makes things worse, that it scares me, that it will make her have a painful place on her arm for a long time, that she needs to stop, that we will do whatever we can to help her stop.  She doesn't act like she is listening, but I hope she is.

I've been thinking about the autism acceptance movement.  I believe in a lot of the parts of it.  I do accept Janey, but there is no way on earth I can accept her hurting herself.  I can't see autism as a positive when it leads to that kind of horror.  I wonder how that fits into that philosophy.  I'm struggling to see how in the world acceptance can stop behaviors like this.  I guess if I could explain to her that I accept her anger and frustration, but not the biting, that would be one way, and I hope I am explaining that to her.  But she has almost zero impulse control.  Even if somehow she is understanding that, when the urge to bite hits, I am pretty sure she isn't thinking about anything but her anger and how she wants to bite herself to deal with it.

I have to admit this has me in a bit of despair.  If anyone has dealt with this, and/or has ideas, I'd love to hear them.  If you don't, thanks for being there just to listen.

Sunday, June 2, 2013

Assuming Janey understands---the tough part

I've been trying this weekend to assume Janey understands far more than she lets on.  I was inspired to do that by what she said to her teacher for next year, which I wrote about last time.  I know that at the very least, Janey understands more than she says. But what is making this hard for me is what it would mean if it were true.

One part of it is what the wonderful blogger of On the Train With Sophie commented.  It's too hard sometimes to hope for that, because if we come to believe it, it will be that much more of a fall if we realize it's not true.  I am like that in life.  I keep my expectations low.  I'd almost always rather be surprised by something going better than I expected than be disappointed by it going not as well as I expected.  But for the sake of Janey, as she said, I want to take the plunge.  I want to believe Janey can understand and do and learn far more than what she shows right now.

However, I think what is feeling even harder to me is trying to figure out how exactly I deal with Janey's tough behaviors if I assume they come from a place of understanding.  Somehow it's easier for me to accept Janey being aggressive to me, or biting herself, or spilling things all over, or staying awake all night screaming or laughing, if I assume she doesn't understand in any way what she is doing.  I can accept more than she lashes out without understanding at herself or others, or that she spills the soda all over the floor because she has no idea it will bother us, than thinking she understands just what she is doing.  Because if that is the case, what kind of torment is going on in her mind that would make her bite her own arm hard?  What would make her want to hurt me with biting?  Why would she do something that she would know would make us furious, that she knows causes a huge fuss and scene?  Is she that sad, or that angry?  That is hard to think about.

I've been trying talking to Janey about things she does, like I would talk to any eight year old that would understand me.  I explained why biting herself is a very bad idea, and I talked about knowing sometimes people feel very, very mad, and that it's fine to say or just to think "I am very mad at my mother!", but that biting is not okay.  I tell her that she can bite a pillow or a blanket or toy, and I've been trying to catch her doing that and praising her for that.  Sometimes she seems like she is listening, but I don't know.

Tonight, as I got Janey to sleep, I talked to her.  I told her that I think she understands a lot of what I say, and that I am going to try harder to keep that in mind.  I told her I loved her, and that I know it must be very, very frustrating if she doesn't have a way to tell me why she does the things she does, or what she is thinking, or what I can do to help her.  I told her I am trying to be the best mother I can to her, but that I know I've made mistakes, and I hope she can work with me.  I don't know if she understood me.  I never know.  That's the hard part.  But it felt good to talk to her that way.  I'm going to keep on trying.

Saturday, June 1, 2013

The moments of clarity

Yesterday, I got a call from a teacher at Janey's school.  She is also a friend of mine, and has known Janey since she was born.  She will be Janey's teacher next year.  She told me a story that stunned us both.  Janey was in the auditorium of the school, with an aide that the teacher hadn't seen before.  Janey walked up to the teacher and said, in the voice she described and I recognized from the description as one she almost never uses, the voice of a typical girl her age, in a crystal clear tone "Is Maggie coming to school?"  Well, that's amazing in quite a few ways.  Maggie is the teacher's daughter.  She doesn't go to Janey's school.  Janey knows her because she has been to her house to play with her---she's known Maggie since Maggie was born, but the last time she saw her, from what either of us could figure, was three years ago.  So Janey did many things she rarely, rarely does.  She associated the teacher with Maggie, she sought the teacher out, she spoke clearly and meaningfully, she asked a question, she showed a memory of something that happened a long time ago, she expressed an interest in seeing another child, and she asked it completely appropriately, like any other 8 year old would.  Needless to say, I was astonished and thrilled.  The teacher said she was very glad there were witnesses, or she would have doubted it ever happened, and I get that completely.  There have been a few other times Janey has said things out of the blue like that, and I often, after it happens, think "Did that just happen?  Did she just say that?"  If you knew Janey, you'd know how amazing something like this is.

And what does it mean?  We talked about that a little.  What Amy, the teacher, said, is that (and I might not be getting this phrase just right) it means "Assume total understanding".  Although it might not be the case, always assume Janey understands everything we say.  It is something I need to think about a lot.  I don't do that.  I am sure there are many, many times I've said things in front of Janey that she should not hear.  I think that's easy to do, because for the vast majority of the time, Janey shows absolutely no indication she is listening to conversations or that she has any understanding of what is being said.  But then, literally maybe once a year, she shows she does.

This ties in a little to Janey's recent sleep issues.  For those of you following the sleep nightmare this week, we broke the cycle hopefully a night ago.  We kept Janey up late, out of desperation, until 11 pm.  Of course if Janey has been determined to fall asleep, she would have.  But we encouraged the awakeness.  Finally, at 11, I lay down next to her to sleep.  I could tell Janey was tense.  She was resisting sleep with every part of her being.  I had a flash to how I feel when I've had bouts with insomnia, which has happened on and off my whole life.  I feel like I've forgotten how to sleep, like I'll never sleep again.  I lie there in terror that sleep will never, ever come.  It's a hugely scary feeling.  The only thing that works when I feel that way is to take the pressure away, to truly decide it doesn't matter if I sleep or not.  I can't fool myself---I have to really feel that way.  Usually, it takes it being a night where I know the next day is open, that it won't matter if I am tired or not.  I had an inkling Janey might be having that kind of anxiety.  So I said to her "You know, it's okay if you don't sleep.  You don't have to sleep.  You can stay awake.  Mama will be here with you whether you sleep or not.  Don't worry about it."  Janey looked at me with huge eyes, with what I took as amazement I was saying that.  And then, literally within a few seconds, she closed her eyes and went to sleep.  For eight hours.

There is so much to think about here.  It's easy, right now when Janey is fast asleep and I am not in the trenches with her, to say that I will always keep these lessons in mind---that I will always assume she is understanding me.  But then real life kicks in.  When you are on your 6th hour of not sleeping as Janey ravages the house or screams or laughs hysterically or begs over and over to go get ice cream at 3 am, it's not easy to keep that in mind.  Maybe it's impossible.  But as I've often said to the boys, and maybe I should say to Janey too, all I can ask is that you try.  All I can ask myself to do is try very hard to remember these lessons.