What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

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.

Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Kind People

I am not sure why it is, but lately, I have found people are being extremely kind to Janey, and to us when we are with her.  It's not that people were ever usually mean, but this is a new level of kind, a heartwarming going out of their way type of kind.  It might be that people are more aware overall of autism, and so know what is going on with Janey.  It also might be that as she gets close to an adult size and height, it's completely obvious she has fairly severe special needs.  People who might have in the past thought she was just a kid acting out or being silly now can see very quickly that's not the case.  Whatever it is, I'm glad of it, and last night was a wonderful example of what I've been seeing.

We had to take Janey for a special x-ray to see if she has scoliosis.  She has a little bend at the shoulders, and has for a while.  I hope very much she doesn't have it, and it's just something from growing fast and from having abdominal surgery, but we need to have it checked out.  We had put off getting the x-ray for a while, because Janey has developed a huge fear of medical facilities.  After her tough (but good) checkup recently, we had to go back to the same building to pick up new glasses for me, and Janey, as soon as she saw where we were, started screaming hysterically.  We had to reassure her she didn't even  have to get out of the car, but she didn't totally relax until we were long gone form the place.

Last night we were at a different clinic, but Janey knew it was a medical place.  She was very, very upset.  In the waiting area for x-rays, there was just one other mother and child, but the wait was very long.  We had been there half an hour without seeing anyone come out to get people.  Janey had been screaming almost the whole time, lashing out, trying to grab my soda and throw it around, asking over and over and over to go for a ride in the car---it was very tough.  Finally, the technician came out, and I saw why it was taking so long.  I am not exaggerating when I say he looked to be about 95 years old.  I've never seen an older looking person still working.  I am glad he can still work, and I bet he's good at what he does, but he was VERY slow.  It took him a long time just to walk out into the waiting area.  I was dreading how long it would take him to help the mother and son there before us.

Then, the mother did something incredibly nice.  She went up to him and said "Please take that girl named Jane in first.  We can wait"  I almost instantly started crying, from the sheer kindness and thoughtfulness of her gesture.  I thanked her over and over.  She shrugged it off, as I have noticed most truly kind people do, and said she had taught kids with special needs and understood what it was like.

It took the technician about half an hour to do the one x-ray Janey needed, which thankfully, she stood still for, so it didn't need to be redone.  As we went back out to the lobby, I asked Janey to say thank you to the kind mother, and she did.  We thanked her once again and left feeling positive after an experience that could have otherwise been a nightmare.

I hope very much Janey doesn't have scoliosis.  It will be very tough if she does.  But like so many things, it will be made easier by the kindness of others.  The world is full of good people---many more good people than less good ones.  And I am very grateful to them all.

The New Pediatrician...Autism at the Doctor's Office

A few months ago, I made the tough decision to switch Janey to a new pediatrician.  Our old pediatrician had been with us since the day my oldest William was born.  He helped us with William as a little preemie, he guided us through both boys' asthma, and he was at the end of a number of desperate phone calls at various times in my years of raising the kids.  I liked him a lot.  But for a number of reasons, he wasn't the right doctor for Janey.

The most important one was just in terms of ease of transportation.  He was at a clinic in the city, one I couldn't drive to.  It was very easy to get to by public transportation, but with Janey, that's not always practical.  I needed a doctor I could drive Janey to easily, so Tony wouldn't have to miss work.

The other reason, though, is that I never quite felt he felt comfortable with Janey.  I am not faulting him for that, at all.  Janey is tough.  He was professional with her, but I don't feel like he truly got her.  And that's okay.  Not everyone is able to deal well with a child like Janey.  I have realized that over the years.  Some friends fall away when faced with the reality of her.  Others step up to the plate.  To be brutally honest with myself, if I had not been thrust into the world of parenting a child like Janey, I might be one of those who didn't deal well with it.  And so I try to understand that not everyone can.  But after Janey's appendix rupture, I realized it was vitally important for me to have a pediatrician who felt comfortable with her.  Her old doctor had nothing to do with diagnosing (or not) her burst appendix--that was all done at the hospital--but I realized I needed a doctor who felt comfortable enough with Janey to tend very closely to her physical health.

So how did I pick this new doctor?  I'd like to say I did all kinds of research, and interviewed doctors, and all that.  No, instead I picked the clinic I'd like to drive to, looked at the pictures of the pediatricians with openings and chose the one I liked the looks of.  That's how I roll.

We took Janey after school last night for her physical with the new doctor.  Things in the waiting room did not go well, to say the least.  Janey thought she was going for a ride, a nice long ride with lots of music, although we of course told her she was going to the doctor.  But when the reality of that hit, she screamed.  She screamed for the whole half hour it took us to be put in a room.  Then she screamed in the room.  She stopped a little while they took her height and weight and blood pressure---she likes that.  But she resumed screaming after that.  This wasn't the fault of the office.  Monday night is a busy time in a doctor's office.  I hadn't realized that.  And they were very sweet to Janey as we waited for the doctor, but Janey was not happy to be there.  We kept reassuring her this was NOT the hospital, she WASN'T going to stay overnight---but I am sure there was some flashbacks for her that weren't pleasant.

And then the doctor came in, and I somehow knew immediately we'd gotten lucky.  I liked her right away.  I loved how she addressed Janey directly, asked what she liked to be called, said she was sorry sincerely for the wait, noticed within a minute the main thing I'd been worried about (that Janey's spine seems curved), examined Janey quickly but thoroughly, was there for any questions, and emphasized over and over that we could call her about anything, any time.  She was warm and caring and just exactly what I had been looking for.

Janey calmed down while she was there and took to her right away, which is not the case with everyone, that's for sure.  Everything went well, until of course shot time.  Somehow Janey had gotten a little behind on shots, and in fact had never somehow had the 2nd chicken pox vaccine she was supposed to get a while ago, so she needed 3 shots.  Two nurses came in to give them to her.  We held her down, probably more so than at first the nurses thought we needed to, but the minute she got sight of the needles, she screamed and tried to bolt, with amazing force and suddenness.  They were startled!  We managed to get her held again, and she didn't seem to mind the actual shots at all.  We left feeling good about the appointment, although drained.

So now, we have to get an xray to see if Janey has scoliosis.  I hope she doesn't, of course.  We also discussed various options for dealing with PMS, if that becomes a problem---we've just started down that whole road.

I'm glad we made the doctor change.  It's hard sometimes, not just with doctors but with people in general, to accept that not everyone is going to embrace Janey, but it's a fact of life, and I understand it.  It's up to us to keep working to have as many people in her life as we can that do embrace her.