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!  

The Answered Question

Yesterday, I waited in the car with Janey while Tony picked up some books that were on hold at the library.  I had Tony's phone, and to keep Janey happy, I asked "What song do you want to hear?"  And she answered.  She said, right away without a pause, "Lady Madonna"

If you knew how rare that kind of answer is with Janey, you'd know how very, very happy it made me.  You might rightly ask "Then why do you ask the question, if she doesn't answer?"  Well, lots of reasons.  Even if she doesn't answer, it can often start a dialogue.  The usual result would be her repeating "What song do you want to hear?", which would lead to me making some suggestions, which then leads to her repeating back one of the songs I said.  Then, I put it on and either it makes her happy or freaks her out.  If it freaks her out, sometimes she'll then say or give a clue what song she does want, or use the feature that shows related videos or songs to pick one she likes.

Often, though, I just ask because it's very hard not to.  For a while, I decided I would try not to ask Janey questions.  It felt like something I should try, since she so rarely answered and I wondered if just being asked felt like pressure to her.  I wrote about trying do that here.  I tried for a while, and then the trying just kind of died a natural death.  I generally am not a fan of doing anything with Janey that feels artificial, forced, and that did.  So I kept asking.

The biggest reason I ask is that I hope for answers.  I want more than almost anything on earth to really know what Janey wants, what she likes and doesn't like, what delights or confuses or scares or excites her.  I want to understand her, to know who she is, so I can make her life as much one that she enjoys living as I can.  And that is why getting a direct answer from her meant so much to me.

I found "Lady Madonna" on YouTube and played it.  Janey didn't respond much.  Usually if she likes a song, she gets very excited and flops her arms around and smiles and laughs.  She didn't at this one.  I later realized that I might not have checked well in my excitement and it might have been a cover version, as there are few Beatles videos on YouTube.  Or maybe she just wanted to hear it for some reason other than that she loved it.  I certainly sometimes listen to music I don't love, to hear the lyrics or understand the style or expand my horizons.

I have a feeling, a hopeful feeling I almost hate to mention for fear of a jinx, that we are close to a new era with Janey.  I feel like she's on the edge of breaking through, of showing us more of who she is, of communicating more.  I'm not sure why I think that, besides little things like the answered question.  But I was thinking today how teenagers, for better or worse, tend to come into themselves, to know what they like and don't like, and they aren't shy about letting people know, usually.  And Janey is within a year of her teenage years.  With all the talk about how crucial the early years are for kids like Janey, I think it's sometimes lost that a lot of kids get easier as they get older.  Maybe "easier" isn't the right word.  I don't want it to be just that it's easier for me, for us.  I want her to be happier, and maybe I should say a lot of kids seem to get happier as they get older.  So far, puberty doesn't seem to be tormenting Janey much.  Overall, she is happier than at any other time in her life.  Not every single minute or hour or day, of course, but overall.  And I hope the answered questions help, and keep on coming.  They are wonderful.

Scoliosis Appointment

Today was Janey's scoliosis appointment, the second in what will be a series of appointments to see to what extent her scoliosis is worsening or getting better.  It was a tough appointment, and it made me think a lot about how hard it is to truly access effective medical care for our kids.

The appointment was at eight in the morning, so the first issue was that Janey didn't go to school on the bus.  That's a change of routine, but she was actually excited about it.  She hopefully asks almost every morning if we can go for a car ride, and today, she must have thought we'd finally come to our senses and forgotten the school nonsense and just decided to take her driving.  She was cheery right up until we got called in for her x-ray.

At first, the technicians tried to give Janey a very high tech x-ray, in a booth where she'd have to stand still for thirty seconds with her hands up high while her back was scanned.  They asked me if I thought she'd do it, and I said it was a possibility.  Janey sometimes surprises us greatly with her cooperation at such things.  The last time she had an x-ray, when she was in the ER with pneumonia, she was great.  But this time---no.  The booth freaked her out.  She started screaming.  They quickly decided to switch to a more conventional x-ray, but that involved waiting for another room to be set up.  Janey and I had to wait on some chairs for a little bit.  Everyone was quick and friendly, but Janey was not happy.  She screamed at the top of her lungs and bit her arm and tried to bite me.

Thankfully, we quickly were in the other x-ray room.  Here, Janey calmed down a lot.  I put on  a lead vest and was able to hold her hand as she stood against the wall for that x-ray, and she was totally still, so they could get a good read.  I was very proud of her.

Another quick wait in the waiting room led to more screaming.  The room was full by that point of girls about Janey's age, there I am sure also for scoliosis checks too.  With Janey's screaming, I didn't have time to look at them  much, which is in some ways good.  It can be hard to see kids her age reading, having involved discussions and basically doing a lot of things Janey doesn't do and probably will never do.

Then, on the exam room.  Janey was highly agitated by then.  She wet herself, through her pull-up, all over the exam table and her clothes.  We cleaned up as best we could, and then the doctor came in.  He tried to look at Janey's back, and she twisted and turned, making it hard for him to examine her.  We tried to hold her so he could, but he said "No, no, it's not necessary"  I was annoyed at that.  YES IT IS necessary, when you are there for his expertise, for him to be able to see her.  I'm not an orthopedist, and maybe the x-ray tells him all he needs to know, but if he usually views a child's back, I want Janey's viewed too.  But in the midst of the screaming, and with him quickly moving to the computer and talking in a low tone about what he was seeing, I had to just listen and couldn't or didn't speak up.

When the doctor saw the x-ray, he asked if I'd held Janey's hand for it.  I said I had, and he said that made it hard to tell what was curvature and what wasn't.  Well, no-one said I shouldn't hold her hand.  I had done it to calm her, but that was at probably the calmest part of the appointment, and she might have been fine without it.  Again, we were there to get a good idea what is going on with her, so it's frustrating to not get that done to try to keep her happy.  Anyway, he said last time her curvature was 16%, this time it looked to be 20%, but "that's within 5 percentage points so it's really the same"  He said she still had a lot of growing to do, but then asked when she had gotten her first period (last September) and how old she was.  He thought she was 13, and when I told him she was 11, he looked at the x-ray part that showed her hip and said "she's not going to grow a lot more.  This isn't how most 11 year olds look" As runs in my family very heavily, Janey went through puberty very early and has a body that is far more womanly than most 11 year olds.  I didn't grow much at all after 11, nor did anyone in my family.  So her current just under 5 feet might be as tall as she gets.  I'm not sure how this affects the news about her scoliosis.  From what I could gather with the screaming, it might mean it's too late to do much about it.

We see the doctor again in 6 months.  I left the appointment feeling overwhelmed and frustrated.  I don't think she got the exam she would have gotten without the autism and tough behaviors.  I am not blaming anyone here.  I know her behaviors are on the extreme end of the spectrum, and that these doctors and technicians are not autism specialists.  Everyone was kind and tried hard.  But my feeling is that no matter how tough a kid is, give them the SAME CARE anyone would get, even if it involves upsetting them.  Five minutes of being upset and screaming is nothing compared to what can happen otherwise.  I think always, of course, of the horrible night when the emergency room missed Janey's probably already burst appendix, because they didn't want to further "upset" her.

I've heard from a few fellow mothers lately about pediatricians simply dropping or trying to drop girls with low functioning autism.  We are lucky in where we live.  We were able to switch Janey to a pediatrician that seems wonderful.  We have Mass General hospital, a top notch hospital with a commitment to caring for people with autism.  We have two kinds of insurance for her, and so financially can afford to get her whatever care she needs.  But still, with all that, Janey's autism limits our ability to get her the same health care another child with autism would be able to get.  Although the reasons for this are many, it's a situation I find hard to accept.

Tougher, the same as and better

Janey will be 11 soon, and I've been reflecting on what 11 is like for typical kids, what 11 was like for me.  It's not the easiest age for any girl, I don't think.  It's typically the start of middle school years, around the start of puberty and of girl on girl meanness and on starting to notice boys, the age of questioning your parents and figuring out who you are.  I think a lot about ways that life with Janey is, all at the same time, tougher and the same as and better than with most almost 11 girls.

The tougher part is quite obvious, of course.  It's a lot of what I write about.  It's tough to have a girl her age who isn't usefully toilet-trained, who is minimally verbal, who has no academic skills, who screams and bites herself when she's upset.  It's terrifying, as we found out, to have a child who can't tell you the most basic things that are wrong physically---who can have a burst appendix for days that even doctors at a top notch hospital can't easily detect.  It's sad to not ever really know what Janey's life at school is like.  It's very hard that she doesn't have friends.  It's heartbreaking that her future is not going to include marriage or a career or children.  All that is, putting it mildly, tough.

Some parts of Janey at this age are really not that different than having any almost 11 girl.  That hit me this past weekend at the beach.  Janey loves the beach, and she ran in and out of the waves and picked up shells and just had fun in a way that was truly not that different than anyone else her age.  Of course we had to keep an eye on her, but we would be keeping an eye on a typical girl that age in a public place.  Her enjoyment of the beach was not because of her autism, or despite her autism---it was just enjoyment.  When we all sit down to eat Chinese food or pizza, she is no different than any sister in a three kid family.  She grabs her share and we all gobble down.  There are moments when I look at the three kids in the back of the car and think "There's my family!" and don't think for a minute about the autism.  That might not seem like a big deal to most people, but it's a wonderful kind of ordinariness to me.

And there are the parts of Janey at this age that are better than what I think life would be like with a typical almost 11.  Yesterday after school, I put on some Beatles while I did dishes.  Janey was in the kitchen with me, and she delighted in the music.  She delighted to such an extent that she was truly in a state of bliss.  We listened together to "In My Life" 5 times, as she kept hitting repeat, and as tears came to my eyes, she hugged me over and over.  Then we danced to "Birthday", the theme song of her shared birthday with Freddy.  I thought about this birthday to come, when my baby will be 11 and her brother Fred will be a legal adult, 18.  I thought of the moments of joy with Janey, and how she will in some ways always be my sweet little girl.  The joy with Janey is pure and overwhelming when it happens.  Those are the moments that keep us going.

90% Chance of Sunny Days

After my last dark post, things have calmed down.  Or that is, most of the time.  If you took away about 10%, or maybe less, of the last week, it would be one of Janey's best weeks.  In many ways, she is doing wonderfully.  We have noticed a strong uptick in her talking.  She seems to be truly trying to use sentences more.  She has used the potty successfully at least once every day for five days now.  She has treated us to a ton of her huge happy smiles.  She's been quite a lot of fun to be around.

But the 10% stormy weather?  Pretty tough.  We had a couple truly horrible diaper incidents and a few unbelievably intense screaming fits.  However, there is a quickness to her dark times than we've never seen before.  In the past, a sad or upset Janey meant the next weeks were going to be sad or upset.  Now, she seems to move past the moods quite quickly.

After I wrote last time, quite a few people mentioned Janey might be starting puberty, and that PMS type symptoms in autistic girls can be very, very tough.  I think it's very possible that might be the case.  In a way, that makes me relieved.  Not that I am looking forward to all that, but it gives a reason for how Janey might be acting, and gives me hope that the other, better times might be the new norm.

Janey had her annual physical today.  She rarely sees the doctor in between physicals, as she is extremely healthy.  She basically never gets sick.  I don't think she's missed a day of school due to illness for three years or so.  Her older brother William is the same way.  So her doctor was seeing her after a year of change.  And Janey put on the charm, hugely.  I don't think he's ever seen her at her best, ever.  He has know her from the day she was born, and her brothers long before that, but she has always been very upset during doctor's appointments.  Today, she was in a wonderful mood.  She talked for him a lot more than she ever has, she cooperated in being examined, she sang and danced around, and she said goodbye to him by name after the appointment.  Something in the way it all went made us feel quite hopeful and good.  She has grown up in the last year, literally as well as emotionally.  She is exactly at the 50% percentile in height and weight, and she suddenly looks like a big girl, not a little girl.  Everyone at the office noticed it.  When I looked back at a year ago, I could see that in some ways, she's made good progress this year.

Here is a picture of her at the doctor's office, smiling her 90% of the time smile.  How I love that girl.