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Saturday, May 26, 2018

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance
I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!
Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

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.

Friday, May 11, 2018

Janey's request and how it hit me

Janey running down the driveway
As the weather gets more summery, Janey loves to be outside.  Her favorite thing to do is just to run around our driveway.  The driveway is fairly long, and on a slope, and she does laps, and sometimes yells out in glee as she runs down the slope.  She seem to enjoy just being in the sun and wind and weather.

Last night, after a car ride with Daddy, I went outside and sat on the steps by the driveway to keep an eye on Janey as she played.  After a few minutes, she came over to me and said "Want to snuggle on Mama's bed?"  I took that to mean what it usually does---that she wanted to go in and have us both get on her bed for a snuggle (the bed is Janey's, but it seems to be named "Mama's Bed")  I started in and waited for her to follow, but she didn't.  I said "Come on in, Janey" and she then said what set me back "Want to go away?"

Janey says "Want to go away?" a lot now, but until now, always inside.  She often wants me to go in the next room, to get out of her sight a bit.  I try to do just that, whenever I can.  She has a right to time to herself.  Of course, I'm always keeping my ears open, and every few minutes, taking a peek to make sure she's okay.  She almost always is, or if she's doing anything that I need to stop, it's things like fixing herself a bowl of salad dressing like one would have soup, or trying to re-arrange the cats when they don't want to be re-arranged.

Up until yesterday, though, Janey had never asked me to leave her alone outside.  And, of course, I can't.  I can't leave her alone outside, ever.

I tripped over my words in answering her.  I wasn't expecting the request.  I said something along the lines of "Mama has to stay out here with you.  You're not big enough to be outside by yourself.  I need to be here to take care of you".

Of course, Janey is old enough that if she were typically developing, she could certainly be outside by herself.  She's 13.  When I was 13, almost every day after school I walked through a little woods across from our house and spent hours at the shore, exploring the rocky banks of the St. George River in Maine.  I love being alone.  I always have.  I crave that time alone.  I'm not sure if Janey notices, but if she does, she's probably seen plenty of girls her age without parents, walking down the sidewalk or in stores or the like.  But she can't be those girls.

We live on a very busy street, one almost like a highway.  Janey has never run into the street, but I live in fear of it.  There is also lots of foot traffic on the sidewalk, people I don't know and obviously can't leave a mostly non-verbal child with no understanding of the dangers people can pose alone outside.  If none of those were a danger, there is the fact Janey sometimes eats non-food items, that she might decide to push aside a stray cat or dog, that she just simply doesn't have the skills or knowledge to take care of herself alone.

Janey gave me a long, hard look after I said no.  She didn't cry, or repeat her request.  She just looked at me.  I was almost crying.  I couldn't say something like "not right now" or "when you're older".  The truth is---it's very unlikely, pretty much completely unlikely, that Janey will ever, ever be able to be on her own in public.

After a few minutes, Janey headed to the door and we went in.  She seemed to be over my "no".  But I thought about it for hours.  I can't imagine a life where I would always have to be watched, supervised, taken care of.  Maybe Janey doesn't feel that way.  I don't really know.  I guess I hope, I hoped, she didn't.  It's easier to hope that, to hope she doesn't see how her life is limited.  As she gets older, as she gets to ages I can so vividly remember being, as I look at her and see a beautiful teenager, sometimes my heart breaks for what her life can't be.