Hearing myself on a bad day

Yesterday was a Bad Day.  Not the worst day ever, but not a very good day.  I read the news too much, and worried too much, about health care and education and Mary Tyler Moore dying and all else.  I am not political, but it's hard to keep from hearing political decisions and worries and anger unless you are in a remote location with no internet, TV or radio---coincidentally, the location I've been daydreaming about somehow going to.  So long before Janey got home from school, I was not in the best of moods.

Frog and Dog from Word World, feeling like I did yesterday

Janey got off the bus yelling.  It took me a few minutes to figure out what she was yelling.  It was a line from "Word World", one of her favorite shows, over and over---"Who's going to read my book on the radio?"  She was screaming it with the intensity you would usually save for warning people of a fire or flood.  I'm sure it was not easy on the bus driver, aide and other kids on the bus.  She screamed her way in, and I guessed that possibly she wanted to see that episode, and put it on.  She watched it, with not that much screaming, but then it was over and another one came on.  Janey didn't want to see the next one.  Not at all.

Tony says that Janey's screaming often hurts his ears.  I thought this was more of a figure of speech.  Maybe I'm half deaf already, but I hadn't had my ears literally hurt by a scream---until yesterday.  Janey's scream over the wrong show coming on felt like someone was poking an ice pick into my head through my ears.  It was truly ear-piercing.

I tried, and in my mind did a good job with, starting my calming patter with Janey as she screamed.  I said things like I knew she was upset, I wanted her to feel better, the wrong show was over...things like that.  However, I also must have said "I don't like it when you scream"  I know I must have said that, because that is the phrase she started repeating.  At the top of her lungs.  For a long, long fifteen minutes or so.  I hope I didn't really sound like her echoing of me.  If I did, I sounded like, well, someone seriously unhinged.

Finally, she calmed a bit and asked for a snuggle.  I put blankets over us, as she likes, and lay next to her and we sang together a bit.  Things seemed better.  Then---the bed was soaked.

As I pulled the sheets and blankets and everything else off the bed, I must have said "I'm so tired of this"  I didn't mean to.  I meant to...I don't know what I meant to say.  I meant to say whatever it is you are supposed to say to a twelve year old autistic girl who is sometimes toilet trained and sometimes not, and who refused at least three times that afternoon to try to use the toilet.  I don't know exactly what that right thing to say is.  I don't know if anyone does.  But she heard me.  She heard me and started repeating, again in scream mode "I'M SO TIRED OF THIS!"  For half an hour.

When Tony got home, I was pretty much reduced to a quivering, ranting mess.  Often upon his entrance after work, I say "Thanks for coming home".  I mean it.  I know there are men, and women, who would, after the years of coming home to a spouse who is acting like I was acting, would say "to heck with it" and just stop coming home.  Tony is not that man.  I am very lucky.  He took over with Janey and I sat for hours watching dumb shows on TV and trying to empty my mind.

Janey slept well last night, and woke up in what seemed to be a good mood.  I hope school is okay.  Reports are she's been having a tough time there lately too.  Yesterday her teacher said she was singing loudly in the morning, and I could picture it quite well.  I honestly don't know how the other kids in the room can work at all when Janey gets loud.

I don't know how to conclude this.  I wish I could say I'll try not to say things that aren't positive to Janey, that her repeating of them shows she hears negative messages from me.  But honestly, I don't know if I can be that perfect.  I don't know if anyone could, anyone on earth.  Most of the time, I can truly say I do the best I can, and I'll keep doing that, but some days, it's a lot harder than others, and I am sure that goes for Janey too.  Thanks for listening, my friends.

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.