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Showing posts with label flapping. Show all posts
Showing posts with label flapping. Show all posts

Tuesday, June 21, 2016

The Happiest Day

This past Saturday, we went to a little amusement park called Thomas Land.  It's an offshoot of a long beloved Massachusetts attraction, Edaville Railroad.  It's aimed probably at the 3-6 year old demographic, an age we don't have a representative of, but William when he was that age was one of the world's biggest Thomas the Tank Engine and Friends fan, so even now that he is 21, he had an urge to take in the park.  We took Janey along not at all sure how she'd feel about it, but wanting to give it a try.

Well, I would have to say it was Janey's happiest day ever, as the video above of her extremely happy flapping shows.  It was amazing, astonishing, purely wonderful.  She was happy, and often overjoyed, the entire time we were there.  She and Tony rode almost every ride, she danced to the music playing in the park, she rode the Thomas train twice, and even when we were just sitting to rest, she beamed at William like we've never seen before.

Janey looking at her brother William with a hero worship look!
I have to admit I'm not really an amusement park person.  I don't like rides, especially anything that goes around in circles, and I don't like the high prices of the food and souvenirs and park entry.  I almost sort of prided myself on thinking my kids would feel as I did..."Janey has some pretty sophisticated tastes.  She's not into things like amusement parks".  I was wrong.  And I'm very glad I was.

Janey's unprompted wave from the elephant ride
My friend Rebecca sent me a link to this blog post, written by a woman with autism about how strongly she feels joy in the things she loves, what she calls the "obsessive joy" of autism.  It make me think a lot.  I don't think I've ever, ever been as happy as Janey was at the park for as long as she was.  With me, there would always be something holding back the joy a little, even when I was 11 as she is.  I'd worry socially---were the people with me happy?  I'd worry about safety---was the ride going to fall over?  I'd worry about how long
we'd stay---was someone going to make me leave before I wanted to?  I'd worry about food---when were we going to eat?  What would I get to have?  I'd worry about the ride home, about the weather, about anything and everything.  Admittedly, I'm a worrier (less now than at that age, but still...) but I think it's a common thing to have our joy measured with worry or care.  I know Janey has worries and cares, but I think she's able to focus on happiness when happiness is what she is feeling.

Thomas in all his glory!
The world is a scary place lately.  I've read a lot about what people are doing to explain the events in Orlando to their kids.  Sometimes, I am glad I don't have to do that with Janey.  She is unaware of world events.  I'm glad of littler things.  She will be going to a new school for summer school (back to her old school in the fall, but summer school works differently) and I am nervous about that.  Janey isn't.  I don't know if she understood me when I told her about the change, but either way, I am pretty sure she doesn't worry much about the future.  She is very sad in the moment when she is sad, but she is also very happy in the moment that she is happy.  I'm not saying it's a better way to be, or a "gift" of autism, but it simply is what it is, and I am happy she can be that happy.

We might get a season pass next year to Thomas Land.  I don't know if any day will be as special as this past one, but I am pretty sure we'll be visiting Thomas, Percy, James, Toby and all the crew for years to come.


Monday, May 2, 2016

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.

Monday, June 28, 2010

Splash Park

I took Janey this afternoon to a splash park near us, a really nicely done one that used to be a wading pool and now has lots of fountain type things to cool off in. My friend Maryellen got us to go---she is very good at helping out with Janey and encouraging me to try things with her. It went pretty well. Janey was quite happy there. She seemed to like seeing all the kids, and she didn't mind the water. I think if we hadn't worked to get her in the water, she would have mostly walked circles around the edges, waving her arms around, but with a little encouragement she went into the water areas. It's interesting how other kids react to her. Kids her age or younger seem to have no clue she isn't totally mainstream. A boy ran up to her and tagged her and said "You're it!" and a girl brought over a Toy Story Pez and tried repeatedly to show it to Janey. Janey pretty much ignores them, but they don't seem to notice or mind---maybe a non-interested kid is less threatening if you are a little shy or something. Older kids seem to see there is something odd about her, but I haven't yet seen one making fun of her---I hope I never do, but that's too much to hope. Adults almost always now seem to know either that she is autistic or that something is odd about her. She gets some stares---mostly when she is yelling with anger or with happiness, or just really getting into circling and flapping. I don't mind the stares as much as I thought I would before I had a child like her. She's who she is, and usually I am concentrating so much on making sure she's okay that I don't have a lot of time to worry about it. She did a cute thing at the park---for about 15 minutes, she put her thumb in the "thumbs up" position to show she liked being there. The crying today was limited to the morning scream. I will have to see how things are tomorrow with Tony at work. She has no sense of work or why he should sometimes be home and sometimes not. I think that must be scary---the boys are sometimes here and sometimes not, as is Tony. It's why I don't go many places---I need her to have someone she knows will pretty much always be around.