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.

My dream iPad app for Janey (and maybe others with autism)

I've thought and thought and thought about what I'd love to see in an iPad app for Janey.  I don't know the first thing about apps or writing them, so I don't know what really goes into it, but I know that many kids with autism have a huge interest in the iPad, and I don't think they are being well served.  There are many communication programs, most of which cost a huge amount and I think are more for schools to buy, and there are lots of toddler or preschool apps that Janey and other kids might be very interested in, but which have design areas that make them not great for teaching her.  I think someone writing the killer app to home educate a child with autism might make a killing, as well as being revered by many, many parents!

Here's what the app would be like.  It would have to first, be very simple to enter.  So many apps require all kinds of choices right at the start, and easily go by mistake to a screen to buy content, or to confusing menus.  You'd have to be able to click on the app and start playing.  Once you did, it would have to feature a very clean screen---not all kinds of hopping or dancing around icons.  I'd picture something like this---a screen with a circle, square and a triangle.  The voice says "touch the circle"  If Janey did that successfully, she'd get a couple seconds of a customizable reward.  In her case, it could be the opening lines of a song she loves, or a piece of a video.  Then, automatically, it would go back to a question screen, and have, randomly or not, a totally different kind of question---this time, it could have 3 numbers, or 3 letters, or 3 faces, with a question about them.  The change there prevents obsessive doing of the same task over and over, which Janey gets into doing.  The program could have a way of analyzing how Janey is doing, and then slowly making itself more complex.  I'm picture a program that could go from capital letters right onto, gradually, reading, or from counting to numbers to adding and in my dream world, on to algebra or something, all done in such a slow and measured way that there are no disturbing jumps in cognition needed.

The BIGGIE is what the program would do if you got an answer wrong.  It would do NOTHING.  It would not make an interesting sound, or say "No, you need to try again" or anything at ALL.  It would move on to another question, in a totally different area, with no reward.  The problem with most programs is that they, without meaning to, reward wrong answers.  Janey loves it when wrong answers result in a shaking no head, or a popping sound, or anything at all.  She even likes it when the game just eliminates the wrong answer and leaves the right ones, or leaves them all there.  I think she likes savoring the wait for the reward, and so picks the right answer last in those cases.  There needs to be no incentive at all for getting a wrong answer!  No punishment either, of course, except not getting to see the highly coveted reward.

The reward would have to be very easy to set up as a personal reward.  What Janey would like might be nothing like what another child would like.  If a child was into Thomas the Tank Engine, it could be a little clip of their video.  If the child was into plumbing (as my older son used to be), it could be a diagram of pipes.  With Janey, it could be a listen to "And the Angels Sing" or "All My Rowdy Friends Are Coming Over Tonight" or "That's Rock and Roll", to name a few of her assorted favorite songs.  Until a child's taste changes, the reward should be predictable and the same every time.  Typical kids would get bored of this, but Janey anyway would feel very gypped if she was expecting one reward and got another.  The reward should also end after a bit automatically.  If it's left up to the child to say how long they want it, they will keep using it forever.

If an app like this already exists, I wish I could find it!  I don't think it does.  There are a few that come close.  One is "Find Me", which was written especially for autistic kids, but it is very limited to one task---finding a little boy against an increasingly crowded background.  It gets the reward just right, but Janey has reached the highest level it goes to and although she still plays it happily now and then, she is no longer learning anything new from it.  Another app that almost works is the First Words group of games.  They require kids to place letters in the right place to form a word (with a template provided) and once the letters are in place, a picture dances around and music plays.  The problem with this one is that it always starts with the same easy words, and goes in a completely identical path each time.  Janey knows that the words get longer and harder, so she just restarts the program at a later time to get back to her easy starting words!

Of course, there are lots of ways to learn besides on the iPad.  But I think the iPad does have a huge appeal to kids like Janey.  It's portable, so they can play in whatever odd body position feels right for them (and Janey gets into some crazy ones!), it exists at both home and school and it's "normal"---it's not an autism only thing, although Janey would not care about that, but overall, I do like her to be into things that other kids might possibly be into also.

We live in an amazing age, where I can even get picky about what kind of apps I want on technology that I would have given up years of my life to have as a kid!  We are lucky that way, to be sure!

"I'm just here for the Yo Gabba Gabba!"

One of the interesting parts of having a blog is being able to see stats on it.  I try not to get hung up on them.  I don't really write this blog to get stats, or to count up how many followers I have, or so on.  Mostly, I write it because I have to---because when I am overwhelmed with the life of a mother of a child with autism, I have to write.  I've always reacted to life's tougher moments that way, which is why high school required about 10 diaries worth of writing for me, none of which I hope anyone ever reads, unless you are very interested in hearing about what boys talked to me in study hall or on the bus, with detailed analysis of what they were wearing and what they REALLY were saying between the lines and what a nasty person the new girl they are going out with is...you get the picture.  I write because I am compelled to write.

Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures.  I guess some search engine directs people looking for Yo Gabba Gabba information to here.  I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here.  If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.

You might be saying now "No, sister, I have no interest in autism.  My kid is fine.  Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!"  And I say---I know.  I have some non-autistic kids myself.  But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way.  They maybe be included in your child's class, or they might be in a special class at their school.  You might see them at the playground, or at the beach, or on a bus.  You might have one as a niece or nephew, or the child of a friend.  But unless you live in a world very unlike mine, you will intersect at some point with autism.  And you might want to learn more about it.  It's a pretty interesting world, if I might say so.  It's also a tough world.  Maybe that glazed-eyed woman in your office is dealing with an autistic child.  Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum.  Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic.  They are out there everyplace!

So, if you happened on this blog but you don't have a child with autism, welcome!  Before I had a child with autism, I read a lot about it, just because it was interesting to me.  The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking.  And if you learn a little about what the autistic world is like, all the better!

Toys

I love toy stores, and I love getting interesting toys for my kids. However, I've found over the years that the toys I like to get are not always the toys the kids like to play with. I've bought about a million blocks since I've been a parent, and they have barely been touched. I've bought several beginner baby video game type systems for Janey, all of which overwhelm her. I've gotten her many dolls, most of which end up as chew toys. William was the easiest to buy for---anything Thomas the Tank Engine or Brio got heavy, heavy use. Freddy always preferred electronic entertainment. Janey---well, it's very hard to get her interested in a toy at all.

What has worked? The best kind of toys for her seem to be what are called fidget toys. They are ones you can hold and move around in your hands---things like squshy balls, Tangles, stress balls, textured baby type toys, things like that. She also likes musical toys---ones with buttons to push to play music. She has always been interested in Play-Doh, and I'd very much love to get her everything Play-Doh that exists, but she eats it, always. Yesterday was a little bit of a breakthrough in that she found some I had hidden and actually played with it for about 15 minutes without putting it in her mouth at all, so maybe that is getting better. She rolled it into a log and a ball, making me very happy. Lately also she likes pouring water or beans or something from one container into another.

The thing that's hard to do is not think age-appropriate, but much lower than her chronological ages. It's so tempting to me to get her things I would like her to like, like Polly Pockets or Barbies or dollhouses. I have to tell myself that she might like them some day, maybe even into her teens or twenties, but right now, the best kind of toy for her is probably aimed at about a 1 year old, and there are lots of neat toys out there for that age.

I've searched a lot for web resources for autistic kids and toys. As I often find, most are aimed at higher functioning kids than Janey. Lots of Thomas, lots of games that she would in no way understand. It seems like someone recommends a toy for autistic kids, and then that just gets copied by everyone, whether most autistic kids would like it or not. I'd love it if there were a site just for lower functioning kids with autism, with toys they can't choke on, that will actually hold their interest. I see some great things sometimes in school or therapy catalogs, but they are priced for those kind of budgets, not mine. Another cool thing I'd like is if some autism agency would lend good toys, like a toy library for autism. I'd be happy to pay a monthly fee to have access to some of the great toys I can't afford. It would be another of those services that would help people like Janey much, much more than another grant for research.

Meanwhile, I'll just continue limping along getting the occasional toy that's a hit with her. I think toys are a huge, huge part of childhood, and it's one of my biggest frustrations about autism parenting---that there is so little to give her that will engage and interest her.