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.

Happy Thanksgiving

I want to say Happy Thanksgiving to anyone reading this, and an extra-extreme Happy Thanksgiving to the other autism/special needs parents out there. My brothers and sisters in lifestyle---you probably understand how bittersweet holidays can be, even one like Thanksgiving, where it is not all about kids being expected to act in certain ways. I am so thankful for Janey, for having her, for her beauty and grace and how unique she is. I am not thankful for how hard her life is now, and how hard it will be in the future. I am not thankful she is going to have to struggle her whole life to be understood, to do things that the rest of us take for granted. I am VERY thankful for the people out there who love her---the family and friends and teachers and staff who care for her. And the students---the amazing students in her room at school who accept her. I am not thankful for how hard life with Janey can be sometimes. It doesn't take a holiday---we had many meltdowns today, diaper incidents, just as many tough times as any day. I am not thankful for the ways autism (not Janey, but Janey's autism) makes life so difficult so much of the time. So bittersweet. I should be more just plain sweet today, but more and more, I am striving to be just plain honest, not just plain sweet. I can say, though, I am thankful for Janey. Not for all her diagnoses, not for all her behaviors, not for the diaper incidents or the crying, but for Janey herself. For the wonderful little girl she is, despite all she has to deal with internally and externally. And I am thankful for you all, my fellow travelers on the slow boat to Holland, to quote another parent. Despite the differences we might have in views and opinions and approaches, we are all in this together. Thank you.

iPad

I thought I'd update some on the iPad, as there is so much hype out there. I feel like it's the first big autism "cure" type trend I'm in the middle of. Of course, no-one is saying it's a cure, but it sometimes feels that way. I think that's why I resisted getting one.

So far, it's fair to middling with Janey. She loves the Starfall app. I'm sure that's because she's used it a lot at school, and so there are no surprises there. What impresses me is how well she can navigate it. I didn't realize she would be that skilled at moving from screen to screen, and getting back to where she wants to be. Mostly, she wants to see the same screen numerous times, and to do that, you have to go to the next screen and then back, or restart the program. So she's learned to do that with ease. It makes me a little hopeful about her future use of technology. She does "get" it in some ways.

However, I put lots of other apps on there (it's amazing how many great things you can get for a dollar or two) and she has little interest in them so far. I'm trying hard not to push them. I try to remind myself that she doesn't interact with things the same way I do. I'd be driven to try each one, to see what each one did, but she doesn't have that urge. And if I try to direct her, it either makes her less interested or doesn't affect her at all. I guess in some ways, that's like all kids. So I am trying to casually play with apps I think she might like, without talking or comment, to spark her interest.

It's an amazing piece of technology, but it's not the miracle devise for autism people want to think, at least for Janey. It does seem to work well with the way she likes to interact with things, and it is teaching her computer use skills. I can see her using more apps on it in the future, hopefully. I'm not sorry we got it, but in some ways, it can be depressing to try something that gets so much hype. It's the history of autism treatment, I think. It's because Janey and kids like her do have those strange, compelling moments of clarity, the splinter skills, the times when they are fleetingly so "normal". Even though I know very well otherwise, sometimes I can't help but be taken in by the wish that we will find the right key and unlock the "normal" Janey. And of course there isn't one. What there is is my own Janey, my beautiful mysterious girl.

Cheerier, and no miracles

Janey got out of her last crying spell fairly quickly. I'd say it lasted a week, and by last Friday, she was very, very cheerful---not manic, but cheery, smiling, talking---great. This weekend was terrific too.

Tony and I thought and thought and discussed and discussed and finally decided to get Janey an iPad, with the only respite money we've ever gotten from the state. We got a one time $500 last summer, and I had saved it thinking I might use it for the iPad, and then had pretty much decided not to, and then with all the 60 Minutes buzz, we decided to get it. It came down to it being worth a shot---that we figured it couldn't hurt, and we didn't want that money frittered away on small things for her. So we bit the bullet and bought one. I spent a long time looking up apps that would be good. I was a little surprised that the main communication app that was shown on 60 minutes costs in the hundreds of dollars. I can't afford that. But there are quite a few free apps, or ones that cost 1 or 2 dollars. I got both autism apps and toddler apps, as Janey functions at about a toddler level in terms of computers.

There's not going to be any miracles for her with the iPad, I know. She likes it okay, and from using it at school, can find her apps on it, open them and sort of run them. But interactivity is not her thing. She likes to watch passively. I didn't put any books that get read to you or videos on, on purpose, but the main thing she's done so far is go to Starfall, which she uses at school, pick the K and have it play a kangaroo hopping over and over and over and over again. I guess there's skill there---she must know what the K is, but it has no real usefulness---I don't think she could find a K in another context. She also likes a game called Fish School, where just by touching fish they rearrange themselves into the letters. What she REALLY loves is hitting the button that makes you back to the menu, and then rapidly hitting the app button she likes, so going back and forth between the menu and the app over and over. I got the program I saw on 60 minutes, to have her touch pictures of objects to see her receptive vocabulary, and when she was motivated feeling, she did very well. She knows lots of words, like "robot", "remote control", "harp" that she would never say, at least when she has 3 pictures to pick from.

And what is missing here is the desire to really communicate. The kids on the show that used the iPad well WANTED to communicate. Janey gets by, with her few words and her actions, and I don't think she has a strong desire to interact more than she does. I might be wrong. But I think that her mind just isn't terribly set up to want interaction with others most of the time. She likes people that she likes, she is not adverse to others being around, but she isn't dying to tell us all kinds of feelings or desires. I have no idea how to change that. I have no idea how to motivate her, none at all. Her motivation is at the level of finding that "K" to see the kangaroo, but she doesn't have the curiousity that would lead her to see what would happen with the M or the R. If I showed them to her, she might like them, and try them again, but there's no push to find out more. She doesn't want to please us, not that she wants to DISplease us, she just wants to live her life the way that feels like contentment to her. It's frustrating. But how can I change it?

Anyway, it's great she's been happy. It's great to see her smile. And who I am to judge what makes her happy, just because it's not exactly moving her forward?

The crying is back!

The last week has seen the return of the crying. It's the hardest part of Janey's autism for me, and whenever it goes away, as it did for most of the early fall, I hope it will never return, but it does. Imagine a crying that starts literally when Janey wakes up, and continues off and on (during some periods, almost all on) all day long. It's very, very tough. During these times, Janey seems to talk less, and when you do get her to talk, she really has no idea what she wants or why she is sad. Believe me, we have tried. When we do the trick of starting the sentence for her "I want....", she will fill in one of about four responses---baba, Kipper, Angelina or snuggle on Mama's bed. None of those are usually what she really wants. Any of them might make her stop crying for a few minutes, but no long term. If we try "I am crying because...." and then offer choices "I am sad", "I am angry", "I feel sick", "I am bored", she will usually pick I am sad or I am angry, but I really don't think she gets the meaning of those words. Change of scenery is hit or miss. She likes the car for a little bit, but not for long. She cheers up at the idea of going to school, but cries at school a lot too, from all reports. It seems like it's just a storm that has to pass. Usually, within a week, she is better. She will be "regular" for a while, and then, after a while, the mania period hits, where she doesn't sleep, she giggles insanely all day and she is just generally hyped up.

They don't diagnose manic-depression in children any more. They don't think it really occurs in children. So okay. We won't call it that. But it's cyclical, it's severe, there seems to be nothing to be done about it. It's heartbreaking. I feel guilty every day taking her to school, knowing she will cry there. But she'll cry just as much if not probably a lot more at home. She is occupied at school, and it gives me some time to gather myself together. I still feel guilty. I feel like when she is being tough, she is all mine to handle. When she's just autistic, or just delayed, I feel okay having more people enjoy her and teach her and appreciate her, but when she's crying or angry, I feel like it should be only me (or only me and Tony) working to keep her happy. And I have to let go of that, or go insane.

To be fair, this is far from the worst crying period she has. The crying is not all day. It is truly off and on. She wakes up crying, but she had a lot of time yesterday when she wasn't crying at all, and that is what was reported from school, too. Maybe that should be a hopeful sign. Maybe, as she gets older, these crying spells will be milder. Or maybe not. Tony thinks sometimes she's sad because she is becoming aware she is different than other kids, that she can't talk like them or learn like them. I don't think she's at that level yet, but it's possible. It would be hard to say.

I hope this current crying cycle is nearing its end. Hope springs eternal, so when it's over, I'll hope it never comes back, but reality tells me it will, and dealing with cycles like this is something we need to learn to do. If there is a sunny side to all of this, Tony and I were saying how it makes us realize that regular autism is nothing, regular retardation is nothing. If she were happy, we could pretty much care less if she is showing a lot of autistic behaviors, or talking very little. That's selfish to say---of course I want those things for her, but if they aren't meant to be, they aren't meant to be, and we can handle that. But when it's those plus unhappiness, it feels sometimes like we have been chosen for some special kind of torture, as has Janey. I try to end on an upbeat note when I post, but I'll be true to myself and not falsely be upbeat here.