Anyone else?

I've been wondering lately about quite a few traits, issue, habits and the like that Janey has---wondering if other kids like her share them.  Among the many thoughts I have about the whys of autism is that there is a genetic syndrome of some type that a lot of girls with autism share.  I don't know if that's the case, but even if it's not that, I thought I'd do a post to ask "Anyone else? Have you noticed these things about your child?"  

Lack of strong hand preference

Janey is usually right handed, but sometimes she'll use her left hand for things.  I noticed the other day when she was eating a bowl of pasta, she started out for about the first half holding the spoon in her left hand.  She switched in the middle, but it's not uncommon that she seems to pick a hand at random.  I think it's harder for her to do things with her left hand, but she doesn't always seem to realize that automatically.

Sleep issues that rotate

 

Most kids with autism seem to have some sleep issues, Janey included.  But we've noticed hers seem to go in waves.  She'll sleep a pretty normal schedule for a few weeks, then have a lot of insomnia for a while, staying up all night sometimes and other nights sleeping only a few hours.  Then she might switch for a while to going to bed very early and waking up in the wee hours, like 1 or 2 am, and not going back to sleep.  After that, she might have a period of sleeping a huge amount---12 hours at night and also taking naps.  Then, maybe going to bed very late and being very hard to wake in the morning.  Each pattern lasts a while once it starts.  

Speech that varies in frequency and clearness widely

Kind of like the sleep, Janey's speech goes through cycles.  We'll have a few weeks where she talks much more than usual, and says things we haven't heard before.  Then she might have a while of rarely speaking, and only using a few set phrases.  In addition, sometimes her speech is crystal clear, but sometimes it's almost impossible to understand, very slurred, or she might leave out parts of words.  The echolalia speech is off and on too.  There are times she quotes videos almost all day, and other times she does that not at all.

Lack of menstruation

Despite seeing specialist and having lots of tests, we still have no idea why Janey doesn't get periods.  She had one, at about 11, and a few other very very light ones around then, but since then, not at all.  She has developed normally otherwise, and looks her age if not older, but she just doesn't get periods.  I haven't really heard of other girls with autism having this issue, and I'd be very interested to know if others do, or if this is just a totally unconnected issue.

Odd eye movements

Once in a while, Janey's eyes roll up in her head, and she stares at the ceiling, and doesn't seem to be able to stop doing that for a spell of 10 or so minutes.  She sometimes gets very upset when this happens, and screams.  We have taken her to a neurologist, who says this is not a seizure---a seizure wouldn't involve both eyes.  This seems to happen more in the evening, when it's getting dark but isn't completely dark.  

Very healthy or overwhelmingly sick

For the most part, Janey very, very rarely gets sick.  She can go whole school years without missing a single day due to illness.  She doesn't seem to get the colds or stomach bugs that are going around.  However, the few times she has gotten sick, she's gotten VERY sick.  One time was the awful burst appendix, after which she got pretty much every complication possible and was in the hospital almost a month.  Another time, she got the flu and pneumonia, had extremely high fevers and was in the hospital for a few days.  At that time, some doctors said they wondered if there was something odd with her immune system, something that fought off most all illnesses but caused the few that did get through to be quite severe.

There are other things I could list, but I'll stick with those for now.  I'd love to hear from anyone about these!  

A long ago worry resurfaces

For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes.  Basically, she rolls them up so high you can only see the whites of them.  This seems to happen more often at night and outside, when she's a bit tired.  It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it.  Once in a while, she does get upset.  One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up.  I sat her down and covered her eyes for a bit until she got control of them back.  We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.

Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high.  She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is.  I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember.  Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.  

Later that day, I got a call from the school.  Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while.  It had happened twice that day.  I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry).  She recovered from the jerking and was cheerful and wide awake.  Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep.  This hasn't happened with Janey, with the eye thing or with the leg jerking.  However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.

At Janey's physical, we explained about the eye events and leg jerking.  Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist.  She gave us a referral and said we should see one within a month.  As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April.  I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.

When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old.  She wasn't walking then.  She was just barely sitting up, so obviously her physical development was very, very delayed.  We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office.  It's hard to remember the details of that visit, but she ordered an MRI, which we got.  And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.  

I remember getting that call fairly vividly, although I think I've tried not to think about it over the years.  The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better.  We live near trains, so of course a train was going by.  And the neurologist had a very, very heavy Russian accent.  I could barely understand her under the best of conditions.  But from what I could hear, she said that the MRI wasn't normal.  She said something about there being gray matter where white matter was supposed to be, or vice versa.

It's hard to understand why it seems like there was never any followup on the finding.  I honestly can't even remember talking to Janey's pediatrician about it.  Her old pediatrician was, well, not great for Janey.  He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time.  He also just seemed to be overwhelmed by Janey's various needs.  I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us.  Two was her golden year.  She walked, she talked a lot, she was even discharged from Early Intervention.  She was going to be fine.  And then, of course, around age three, the horrible regression happened.

But I did recall looking up what it meant to have gray matter in the wrong place, or white matter.  I found it was a condition called Gray Matter Heterotopia.  There wasn't much info then, and I think I didn't dig too hard.  However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade.  That seemed very far away.  Now, of course, we are in Janey's 2nd decade.  So I mentioned the long ago MRI to Janey's current pediatrician.  She looked up the long ago report, and read me a bit from it.  

The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis.  It also said there were changes to the frontal lobe, nonspecific changes.

Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available.  Here's a Wikipedia article. LINK    It's hard to read, emotionally, what is out there. 

Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading.  What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.

So---something I had put out of my mind long ago is now, of course, back in my mind.  One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms.  But it could also be serving to mask seizures, her pediatrician mentioned.  Is Janey having seizures?  Is this the next thing?  I know seizures are fairly common in autism.  How does the gray matter issue figure in, if at all?  Is there something we should have been doing specifically for all these years that we weren't or aren't?  What is going on?

Amid a season of many worries, this one is hitting me fairly hard, I must admit.  Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out.  That's what we've been doing, and that is what we will keep on doing.  It's what all of us living this life do.

Two Non-Fluent Speakers

I read a lot of books about people going to live in cultures new to them.  It's an armchair travel thing---I doubt I'll ever really live that life, but for some reason, it fascinates me.  Often, the people in the books end up having conversations where both speakers are not fluent in each other's language.  They get by on the words they know from the other language, with a lot of guessing and a lot of misunderstandings.  It struck me today that that is what Janey and I do.  She's not fluent in English, and I'm not fluent in Janey-Language.

The double non-fluency can make communications very tough.  A good example happened this weekend.  Janey was crying, and said to me "Does your eye hurt?"  She often does that, reverses the pronouns and says what she wants me to say.  I asked her to use my hand to touch where it hurt.  That for some reason seems to work much better than having her point.  She took my hand and put it next to her right eye, and then tried to get me to poke at her eye.  I said "I can't poke you there, but let me look at the eye"  I didn't see anything, but it was obviously bothering her.  She then said "My eye is bloody!"  The eye wasn't bloody, but I was proud of how she worked hard to use her non-fluent English to tell me how upset she was over the eye.  I think it was a dry allergy type eye issue.  We took a shower and she felt much better.  But I wished so much we were able to better communicate, that she could have told me exactly how it hurt, that I could have reassured her that it looked fine and that it wasn't anything serious.

Janey woke up this morning crying hard.  The crying is communicating, of course, but I can't understand the specifics of it.  I had no idea what was upsetting her.  We went through the regular morning routines, with the tears still flowing.  They lasted until she went out with Tony to wait for her school bus.  Then she instantly cheered up and was hugely happy getting on the bus.  Although I started the day saying to her "It's a school day!" as I always do when that is the case, I think she somehow wasn't sure it was really a day to go to school.  I think she was upset it was going to be another dull old day at home with Mama and Daddy.  That's my best guess, anyway.  I wish so much, more than I can possibly say, that she could tell me why she's sad when she is.  And I wish I could communicate back to her, that if my guess was right, I could have reassured her that it was indeed a school day.

If there was a way for Janey to be fluent in English or me to be fluent in another other means of communication that would work for her, I would do it.  It wouldn't have to be spoken, of course.  If she was able to  use sign language, or typing, or an iPad talking program, or anything at all, I would do anything to communicate that way with her.  But we have not found that way.  We both remain non-fluent in each other's language.  The onus is on me.  I truly think Janey thinks I can read inside her mind.  I think she thinks I know what she is thinking.  I can't even start to imagine how frustrating it must be when she is clearly thinking what she needs, and I don't respond.  I think she resorts to her English and to crying and screaming when she thinks I'm not responding.  So often, she'll bring me the remote and I'll say "What do you want to watch?" and she'll answer "That one"  I'm sure she has a specific show in mind, and she just can't understand why I insist on making her say it in spoken English, which is so often a struggle for her.

Until we find a common language we can both be fluent in, I will keep trying to work on better understanding what Janey says to me.  I will keep trying to help her better understand and use spoken English.  I dream of the day we can communicate with ease.

The Back Yard

Today has felt a lot better than yesterday.  Janey has cried a little less, but a lot of it is just me trying very hard not to be negative.  When she cried some this afternoon, I worked hard to keep my voice upbeat, and said as cheerily as I could "Let me know when you ready what is upsetting you or what you need, and I'll help" and I walked away a bit.  A few times she did (cheese, go outside) but other times she just cried a while and then stopped.  And I kept my sanity.

Going outside is Janey's favorite thing, with the possible exception of music.  She loves to be in the back yard.  This afternoon, I took a bunch of pictures of her, for fun and to show what DOES make her happy, as so much of this blog is about what DOESN'T make her happy!  Our back yard isn't a showplace, but it's fairly good sized for a city yard.  It's on a slope, which doesn't bother Janey---she likes running up and down the little hill.  The times when Janey is outside, making up her own games and just enjoying nature, are the times she most reminds me of myself as a girl.  That's what I did, every available moment.  I love seeing Janey play in a way I completely can relate to!

                                                     Janey looking at the grape vines....

Making up a game with a ball and a bucket

Examining a bunch of leaves

Jumping for joy

My sweetheart in the sun

And here's a few bonus pictures.  The first shows a habit that Janey does all the time---pulling on the side of her eye.  I'd be curious if any other girls (or boys) with autism do this.

And here's a picture of Janey's toes.  Ignore the dirty feet---this is after running around barefoot!  What I wanted to point out there is the left foot (which is to the right in the picture!), how the 2nd and 3rd toes are mildly joined, like they have a common root.  They sometimes also overlap.  I've looked this up, and saw it was connected to a few genetic things, and I was wondering if any of your kids have toes like hers?

"I'm in a bad mood"

Janey has not been happy this week. She's been crying a lot in the evenings and over the weekend, and been fussy at school the last few days too. This morning felt very long, with off and on tears. I kept saying "What's wrong?" or trying to model a sentence for her "I am sad because I want......" or "I am angry because....". Sometimes she will fill those in, but it usually doesn't help much when she does. It occurred to me today that I rarely know exactly why I'm in a bad mood when I am. If someone gave me a sentence like that to fill in, it would be rare I could think exactly how to fill it. Usually it's a combination of things, or something I have no idea about. So I started saying to Janey "You can say 'I am in a bad mood' when you are upset". I said it over and over and over, as I often do when I want her to learn something, and by the end of the ride to school, she was saying it too "I'm in a bad mood! I'm in a bad mood!" and the crying seemed a bit less. With the special kind of mindreading good teachers have, her regular ed teacher said to her as she approached the room obviously not happy "are you in a bad mood today?" I said that she was. I'm going to try to try that for a while---not trying to figure out what's bothering her, but just giving her a name to use for her moods.

The picture shows something Janey does a lot---she pulls on the corner of her eye. I think a lot of kids with autism do similar things. I would guess it makes things look a little different, and just gets to be a habit---I'm really not sure. I've tried to catch it in a picture for a while.

So, a tiring week, for Janey and for us. It's a little hard not to get discouraged during weeks like this, but I'm going to try not to.