My high school freshman

I thought I'd make good use of being up with Janey in the middle of the night to update a bit here!  I can't sleep lately either, so I don't really mind her being awake as much as I sometimes can.

How are things going, you might ask?  Quite well, really.  And I am knocking on wood all over the place saying that.

Janey started high school earlier this month.  I was VERY nervous about it.  She hadn't gone to a new school for many years, and the high school we picked is far away from our house.  But it had the program we wanted, as I've written about. And so far, so good!  The bus has been more reliable than it usually is, despite having to navigate all kinds of complicated Boston traffic and roads to get her to and from school.  We are getting good reports from her teacher, who although I haven't met him in person yet seems great.  We get a page each day, partly self-reported with stamps by Janey, telling us what activities she had, whether she ate much lunch or not, and whether it was a great day, a good day or a not so good day.  There's only been a couple not so good days!  Her teacher (sort of like her home room teacher, as she has several teachers and they rotate around the 4 or 5 connected rooms that are for her program of 40 kids) writes a little note every day and is great at being touch by email, and that makes me so happy.  I love knowing a bit about how Janey is doing each day.

She even has electives!  She didn't elect them, but they were well chosen.  She has dance almost every day, which is just a dream come true.  I've always wanted Janey to get more of a chance to dance.  She has Very Special Arts most days, which is music and art for special needs kids, and she swims several times a week.  Every Friday, there is some kind of outing.  We send in a little money for it.  She has gone to the corner store a few times, and this Friday to the Dollar Tree!  I love the idea of her getting out and about.

Janey has seemed happy at home most of the time since starting school, also.  Her main activity lately is what you might call close watching of two movies---"Coco" and "The Emperor's New Groove".  She watches them both at least once a day, and seems to have memorized them.  She remembers right where she left off if interrupted, and recites the scene she is about to see when she goes back to watch.  As with so many of the things Janey likes, we agree with her taste.  Coco is a fantastic movie, all about music and (this struck me the other day) the power of music to reach those who might not talk much, in this case the title character of the movie, Coco, who is the main character's great-grandmother, who has dementia.  The Emperor's New Groove is just plain funny, and Janey seems to appreciate the humor a lot.  As she got ready to watch it just now, she recited the beginning "I was the nicest guy on earth and they ruined my life for no reason!"  After school earlier, she spent about an hour with nothing on, no TV or music, happily reciting lines from the movies and singing song clips.  I love listening to her do that.  I know it's echolalia, but it's not the kind of echolalia she used to do more of, frantic and unable to stop sounding.  This echolalia is very varied, and seems to just be thinking aloud, a stream of consciousness recitation of what's in her head.  Every now and then, there's a line I think is from school.."Can you guys please come over to the kitchen?" or things like that.

A few weeks ago, my parents visited, and I could tell at one point Janey was in the exact rare mood to show my father something he hadn't seen before, Janey's flash card abilities.  I held up a big pile of picture flash cards, one after the other, and said "this is a...." and she named what was on the card.  ALL of the cards.  The few she got wrong were close guesses, like calling a fox a dog or a tiger a lion.  There were words in there I wasn't sure she knew at all, but she did.  My father was surprised and impressed.

I've been reading more about RPM (rapid prompting method) and it seems like what Janey will sometimes do with the flash cards is similar to what kids do in RPM sessions, from what I can see.  I have to ask rapidly what's on the cards, I have to move right away to the next one.  It almost feels like magic---the way to glimpse what is in Janey's mind that for whatever reason she can't usually tell me.  But it also seems to have the limitations I've heard several people mention about RPM.  It's not really a skill that carries over much into every day life, at least in terms of what Janey readily says.  The words she uses for the cards are not words that are really part of her limited regular vocabulary, and I am not sure how I can make them part of it.  It seems like a lot of the value of the cards is to help people understand Janey's mind, to show she knows more than it might appear. But if she wasn't in the mood for doing it, she just wouldn't, and I wouldn't be able to push her to do so, even if I were so inclined, which I'm not.  I wish, as I have wished for so many years, that I better understood Janey's mind.

On a personal note, I was finally officially diagnosed this past week with Sjogren's Syndrome, an autoimmune disease that among other things causes one's eyes and ears to be extremely dry, and also causes severe fatigue.  I've had the symptoms for a while, and a new rheumatologist I'm seeing gave the official name to it, although it's been tossed around as likely for years.  I mention this for a few reasons.  One is curiosity if anyone else out there has the autism/autoimmune disease connection, for any autoimmune diseases (I have some antibodies showing I might another more serious autoimmune condition or might get it at some point, but thankfully not now, but they all tie together quite a bit).  The other reason is just, well, sort of to talk about how a child's autism interacts with a parent's own health issues.  My tiredness, which at times have made it so hard staying awake when Janey needed me awake that it's part of why Tony retired as soon as he was able to, has along the years made this journey with Janey a bit tougher.  There isn't a cure for Sjogren's, but I am glad to have a reason and an explanation for some of my issues.  And I hope if any of you have symptoms you might be inclined to dismiss as just being part of the stress and tiredness that comes along with special needs parenting, you will seek out a medical opinion and keep trying to get answers.  It took me a LONG time to get really proactive about my own health.

I've rambled here, I'm sure partly because it's 1:20 in the morning and Janey is still going strong, but as always, I've enjoyed virtually talking with you, my friends, my sisters and brothers by means of our shared challenges and joys in life.

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.