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Monday, May 21, 2018

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.

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