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.

The season titles and other communication breakdowns

I'm lucky that in many ways, I'm able to communicate with Janey.  Her understanding of what we say is far better than her speech.  I can tell her something like "go in your room and get a shirt, then get your shoes, and we'll put them on to go for a walk" and she will understand and, if motivated, do what I've asked.  She can ask us for food she wants, for rides, for the bathroom.  She uses gestures to tell us things like "get out of this room so I can watch my show!" or "move your legs so they are in a position that's acceptable to my OCD!"  But sometimes, some concepts and ideas just don't seem possible to explain to her.

A big one that has been a problem for years now happens when Janey wants to watch a video on Amazon Prime TV.  The way their interface is set up, if they have multiple seasons of a TV show, there's a season title block at the start of each season.  This block is the same size as the TV show blocks, and you can highlight it like you do a show.  However, clicking on it doesn't do anything.  It's just something saying "The following episodes are from season two" or whatever.  

Janey is bound and determined to watch the non-existent shows that she thinks are associated with the season titles.  She'll gesture wildly to show me she wants to watch "Season Two".  I've been working hard on teaching her to use the remote to get the shows she wants, and although she's not very into it, she'll try in this case, moving the cursor to the season title and clicking the "A" button.  Of course, nothing happens.  And she starts screaming.

I have explained every way that I can possibly think of to tell her that these aren't show, that they will never be clickable, that they just tell what season we are in.  Frankly, I don't think she'll ever get it.  She doesn't know TV shows come in seasons.  She doesn't get why some blocks would lead to a show and others wouldn't.  She simply thinks for some reason of our own, we aren't letting her watch those shows, and she wants to see them.

This might seem like a little thing, but it's an example of one of the very hardest parts of raising a child like Janey, for her and for us.  We can "assume understanding" as much as we want, we can explain with words and pictures and social stories and charts and examples and all kinds of things, but if it's a concept that is simply beyond her, it doesn't matter.  It's like if understanding string theory somehow came up in daily life for me.  I've tried very hard to read about it, I've watched shows about it and thought about it, but I don't get it and I never will, I daresay.  Thankfully, I don't need to, for regular daily life, but the things Janey doesn't understand do come up all the time.  She asks for chocolate milk when there's none in the house.  She wants to go for a car ride at 3 in the morning or during a snowstorm.  She wants to watch "Hercules" when it's no longer available for streaming or even to buy on Amazon.  She wants to wear her Crocs in the winter.  She wants to not get her hair brushed.  And with all the issues like that, I've done absolutely everything I can to help her understand why she can't, but I truly don't think she is able, cognitively, to grasp the concepts needed.

It's not really autism that is the problem here.  It's Janey's intellectual disability.  Not all kids with autism have an intellectual disability, and sometimes, it seems like it's fashionable to think none do, that it's simply we as parents or teachers or caregivers aren't understanding how to communicate.  I'm sure that's sometimes the case, and maybe often, but sometimes, it isn't.  I feel strongly that to respect Janey is to be realistic. It is not respectful of who she is to deny parts of her disability.  Being intellectually disabled in no way makes her less.  I won't get political, but anyone who uses the old term "retarded" as an insult is not someone I want to deal with, ever.  It's not an insult.  It's not something unspeakable that we have to pretend isn't the case.  It's reality, just like it's reality that there are things I don't have the capacity to understand or do that other people can do.  It's not respectful of me to deny that, and it's not respectful of those who might try to teach me to say they just aren't teaching right.  It's reality.  And it's hard, sometimes, but it's the truth.