The reality of progress

As I sat down to write this post, I thought about this morning. It seemed in my mind to be a good morning. Then I reviewed Janey's behavior. She woke at 5, as she almost always does, asking for videos. When bored at one point with them, she decided to play in the cat litter, which luckily we caught quickly. She peed on the floor a bit after that, all over the place. And just before my hands hit the keyboard, she dropped a piece of cheese she was done with in my coffee. But the mind's editor had edited out that background noise, the everyday autism stuff, and concentrated on the progress. It's how we stay sane.

When I used to like to read books about children with autism (which I don't do, now, but before having my own example, I found fascinating), there would always seem to be a point where the child did something amazing---said a long sentence, showed empathy, created a master work of art, "passed" for normal in a classroom---and the book would end there. It would seem to me like from that point on, things would be great. If they could do that amazing thing, the autism would fade into the background.

The reality is that the progress is wonderful, encouraging, fantastic, but it doesn't create a glorious end of story moment. The autism is still there.

Janey really has been making wonderful progress lately, and I am thrilled about it. I had her IEP meeting last week, and as always with her amazing team, it was an uplifting time. I am almost moved to tears every time I think about how many people at Janey's school love her, care about her, want the best for her, work hard for her. I never, ever take it for granted. I heard great things about Janey---how much more she is greeting people, how she is often recognizing her name, how the other kids love her. I heard the cutest story of all time about her. When her special ed teacher asked her, as Janey gazed at her, "What do you want?" Janey answered "I want to wish you a Merry Christmas!" And then they sang the song together. I heard so many positive things. But of course we all also agreed that Janey still needs to be supervised closely every single second, for her safety. That amid all the progress, the fact remains she doesn't know most of her letters, she can't write, she speaks mostly in 2-3 word simple sentences, she can count but not really meaningfully, she is inconsistant even about the things she knows well. None of that bothers me much. But it stays there, in the background.

Yesterday was a great day. We visited my sister and her son and his girlfriend. Janey learned the girlfriend's name right away, and used it well. At one point when she was crying, she said one of her longest sentences to me "I am upset because I want to go home". (she didn't really that much, but at that moment she did!) She was good in the car, something quite new. She ever did a classic pesky younger sister bit. Freddy was trying to practice his declamation, to recite a poem in class today. Every time he started to recite it to us, Janey starting reciting from a video, in a loud voice. This happened about 5 times. Then Freddy was quiet for quite a while, and so was Janey---not a word. As soon as Freddy started reciting again, she did too, in a loud monotone. She was driving him crazy, and she knew it! Even Freddy had to laugh and feel a little proud.

And yet, she can't do so many things that are special for this time of year. She has no clue what asking for something for Christmas means. She can't anticipate Christmas---she doesn't have the necessary knowledge for that. I am not a huge Christmas gift giver, but there are special things her brothers want, and I know they will be excited to get. I never have any idea what to get Janey. I will probably go with some Funonions, her favorite snack. I know she'll be happy with that. But I'd love to have her asking for the latest hot toy. Yet, she love the tree. And she adores Christmas songs, as the story above speaks to. I am very lucky to be able to enjoy the progress, to see the cute and fascinating things she does.

And so it goes on. It's reality. Reality doesn't end with a breakthrough moment. It's lifelong. We can thrill in the moments along the way, and stumble on, living our real life.

More thoughts on apps and autism

Many thoughts have been whirling around in my mind as I watch Janey interact with the iPad. A big one is---I think a lot of people don't get what drives kids with autism. There are two big traits that I think most kids with autism have, or at least that Janey has. One is a love of predictability over novelty---a lack of curiostiy. The other is a lack of motivation to do anything just to please others. In creating an app that really appeals to kids with autism, I think these have to be kept in mind. Janey isn't going to keep trying something just to see what happens. Many apps depend on this---the reward is getting to a new level, seeing or trying something new. This doesn't appeal to Janey. The reward needs to be something she can predict, but still likes. A good example of an app that works for her is called First Words Christmas (and there are other First Words apps too). You move letters into a word---for example, in "tree", the word tree is written, and the letters in tree are scattered about, and you have to overlay the "t" on the "t" in tree. When all letters are in place, a little music plays and the tree picture moves around. To me, it seems like a pretty boring reward, but Janey loves it. She loves the predictable routine, and the mild reward. Another good part of this app is once you finish one screen, it moves automatically to the next. Even if Janey is enjoying something, if given a chance, she might hit that very tempting menu button and go back to the general menu, if the next activity isn't put up there fast.

This has made me think about the possible overdiagnosis of autism, and the difference between having some cognitive delays and having autism with cognitive delays. If Janey was just delayed without the autism, a lot more apps might appeal to her. She might like the ones that allowed creativity, the ones I download in vain, drawing ones and sticker ones and the like. The curiosity and enjoyment of the free form would draw her in, and she would learn from them. But with autism and the delays, you lose that crucial piece. She has little curiosity. She likes her fun to be fun she's expecting.

I use a trick of quickly showing her apps she might like, and playing them a little in front of her, while she physically tries to move my hands. Then I go to the menu and click on the icon a few times, just to show her how to get there. This makes the app familiar to her, and once in a while, she goes back to it.

Janey got hung up on an app called Starfall Snowman. Starfall ABC is one of her favorite apps, and a great one. I thought she might try the Snowman app, which allows you to make a snowman and then hear a little story with your snowman featured. She liked it, but for a different reason. She'd hit "make a snowman" and then right away hit the X button to exit, and the app would say "Goodbye!" in a voice she loved for some reason. She would do this over and over and over for an hour, just to hear the Goodbye. I decided to delete the app, as she wasn't doing anything else on the iPad and I frankly couldn't stand it any more. The next time she went to play on the pad, she coudln't find the icon, and searched and searched in vain. It was so bad that she had to ask. She said "I want snowman game". I couldn't resist that, and put it back. I then sat there while she played it for about another hour, over and over. A few times, she hit something else by mistake, and very, very gradually, she started to try those other things. It taught me a lesson---I have to let her sometimes discover things on her own, and she will, just not at a normal pace. She doesn't watch the exact same videos every day, she doesn't eat the exact same foods. She does try new things, but very gradually, and I need to respect that.

Overall, it's been a good month or so for Janey. It was hard for me, as Tony went away on business for two weeks, but we all handled it, and it's great to have him back. I think for the first time in quite a few, I feel hopeful about Janey's progress. She is learning at school and at home, in her own extremely quirky way. It's good to see.

iPad update and sleep talk

Overall, I would say the iPad is a success. Janey really likes it, and that is something huge. It's very rare that she likes any object enough to actually request it and use it, except videos. I put lots of apps on, so she would have a greater chance of finding some she liked. Her favorite probably is called "Interactive Alphabet". It has an interactive picture for each letter, and is easy to navigate. The pictures engage her, especially a jack-in-the-box and a robot. She also likes Make It Pop, which has popcorn, balloons, bubbles and fireworks you can make pop. The popcorn counts as you pop it, the balloons have letters in them, etc. Both of these illustrate what is hard to find in apps. There are many great learning and special needs apps out there, but most of them require an element that Janey just doesn't have---a desire to learn new things. They might reward you with some little sound or picture for doing what is asked, but it's no-where near enough to make Janey choose to spend time with them. It's what always confuses me. It seems like many people developing programs for autism just don't get that part of autism, or Janey's form of it. She is not eager to please, or eager to learn, or eager to get to the next level. She likes what she likes, and she will do the same thing over and over until she masters it. A good app will have to sneak in learning, or have a built-in reward that is big enough to make her interested.

The other thing that has bothered me a bit is how expensive some of the autism related apps are. The "regular" kid ones are 1-3 dollars, mostly, but a lot of the autism ones are more like 20-200 dollars. It's something I've noticed so much---"special" toys and apps and programs cost so much more than "regular" ones. Is it a prerequisite to have a lot of money if you have an autistic child? Or does someone like taking advantage of how desperate a lot of special needs parents are?

The best thing about the iPad so far is how it calms Janey down when she is screaming and crying. Four or five times, I've brought it over to her in the middle of a fit and started playing it myself. She is interested enough to stop crying and play. That's worth the cost, right there.

And the sleeping? It's something I need to get a handle on. Night before last, Janey went to sleep about 7 and woke at 1am, and never slept the rest of the night. My husband was away on business, so it was all me, and it was hell. It's a special kind of torture to have to stay awake when you are desperately tired, because if you don't watch your child, they will wreck the house and hurt themselves somehow. I napped a lot during the day, and reports were she actually had a good day at school despite the lack of sleep. Her need for sleep is not normal. Some days, she sleeps a HUGE amount, others, very little, and she doesn't seem affected by either the way you would expect. It's an example of internal factors affecting her more than external ones, as often seems to be the case. If she is manic, she just doesn't need the sleep, and us wanting her to sleep makes no difference. I don't know how single parents do it. If you know a single parent with a special needs child, you will be doing your hugely good deed for the year if you can give them a little respite, or even just let them know how hard it must be for them.