I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water. Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?" I don't think most people do. They love the ocean for other reasons. Lately, I've been thinking about this a lot as a metaphor for Janey's brain. I think there are amazing things inside her brain. I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk. But getting all that out? Sometimes it's like getting gold out of ocean water. To carry the metaphor further, I don't want Janey to be valued for what might be in her mind. I want her to be valued for what she is right now.
But what if we could figure out a good method to get the gold out of the water, effectively and safely? That would be great. I'd go for it. But say I tried and it didn't work. Would I think devalue the seawater? Would I think less of its beauty, and value, and usefulness? I hope not.
I would dearly love Janey to be able to better communicate. I dream of it. I long for it. But over the years, she has made very little progress in this way. This was brought home to me today as I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital. I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now. Her talking ebbs and flows, but it can in no way be seen as a graph going up. She isn't talking more as she gets older. I don't think if she ever will. This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of. There's a good chance we will never, ever hear the great things I believe are in her mind. They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.
I want the world to value Janey just as she is. But the biggest battle I have is with myself. I need to truly accept Janey as she is. I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more. For example, last night Freddy was quizzing me on things he'd learned in school. For fun, he quizzed Janey too, asking her to tell him a number. We didn't expect an answer, but she piped up "Like, four?" I was thrilled, and praised her highly. I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered. And as I watched her face, it turned from happy to confused to blank. She tuned out. I am sure I showed that I was thrilled by that glimpse of the gold in the seawater. Do I act as excited when she claps along to her favorite bluegrass music? Do I praise her for dancing around, for smiling, for just being herself? I need to. I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label numbers. Show all posts
Showing posts with label numbers. Show all posts
Monday, October 7, 2013
Wednesday, October 24, 2012
Ten iPad apps Janey likes
Notice here I didn't say "Ten iPad apps Janey has learned a lot from" or "Ten iPad apps I like". Over the year we've had the iPad, I've realized if Janey doesn't like an app, it does no good. It can be the greatest learning app on the face of the planet, but Janey's not going to use it at home unless she likes it. She knows very well how to use the button to take her back to the menu of apps, and she never hesitates to use it freely if something doesn't interest her. However, the few apps she likes get used a fairly lot. Not a HUGE amount. I wouldn't say the iPad is quite the success with Janey I'd dreamt it might be. She likes it, but as a toy she turns to now and then. I think she's learned a little from it, by chance, when an app that appeals to her just happens to have a learning component, but it hasn't been any huge breakthrough devise for her. That being said, I'm glad I got it for her. Any toy she actually uses and enjoys is a good toy, and the rest of us have fun with it when she's not using it. Anyway, here's the list, with links when I can find them! (in no particular order)
1. PianoBall
This is a simple piano app. You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard. It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next. Janey actually does this now and then, but mostly just fools around the colors and keys. I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.
2. Fish School
Schools of fish form the letters of the alphabet and numbers. You move to the next letter by swiping across the screen. This was the first app Janey got into, and she still likes it a fair amount. It's nice and simple and colorful.
3. Christmas Song Machine
This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite. It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly. You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes. If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.
4. Elmo's Monster Maker
This is a cool app with a lot to it, but Janey doesn't use it the way it was intended. You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life. The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc. However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on. She does this over and over and over. I've often tried to interest her in the faces, but that is not the point for her. You might have better luck!
5. Starfall ABCs
This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home. You pick a letter block and the app shows a few things that start with that letter. Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song. Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this. She enjoys it a great deal, though.
6. Firstwords Christmas
This one actually DOES teach. I was thrilled when Janey got into it. You get mixed up letters of a word, and have to put them in the right place, like a puzzle. When you do, the app says the word and moves a picture around, and makes a sound. Janey has played this for hours. Over the year, I've seen her ability to match letters increase hugely, partly because of this app. There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.
7. FindMe (autism)
This is the only app specifically designed for autistic kids that Janey has gotten into. You find a little boy in an outdoor setting that gets increasing busy as you get better. When you have found him five times, you get a dancing shapes reward. Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat. I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at. If she had to find letters or numbers or shapes, I think she'd be motivated to do so.
8. Noodle Words
This is a very, very well designed and cool app. You open a magic box of words, pick a word, and then play with the word. For example, "surprise" lets you get all kinds of surprises by touching it. There are little guys at the bottom of the screen that interact with the words. It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with. I wish they'd expand this to much more words.
9. GoFun
Here's one of those "why in the world does she like this?" apps. It's a puzzle app. You pick a picture and then it turns into a puzzle to do. The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures. Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over. She never finishes it. There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then. I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.
10. Working on the Railroad
Another app I wish was better, but one Janey likes a lot. It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc. The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.
So there's her list. This is no means a list of the best apps I've found. There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad. I'd love it even more if Janey liked more of those apps. If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes. I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun. If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too. But the designer would have to actually understand autism, or at least Janey's form of autism. They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents. You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them. Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours. That's life in Autism City, I guess.
1. PianoBall
This is a simple piano app. You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard. It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next. Janey actually does this now and then, but mostly just fools around the colors and keys. I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.
2. Fish School
Schools of fish form the letters of the alphabet and numbers. You move to the next letter by swiping across the screen. This was the first app Janey got into, and she still likes it a fair amount. It's nice and simple and colorful.
3. Christmas Song Machine
This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite. It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly. You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes. If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.
4. Elmo's Monster Maker
This is a cool app with a lot to it, but Janey doesn't use it the way it was intended. You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life. The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc. However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on. She does this over and over and over. I've often tried to interest her in the faces, but that is not the point for her. You might have better luck!
5. Starfall ABCs
This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home. You pick a letter block and the app shows a few things that start with that letter. Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song. Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this. She enjoys it a great deal, though.
6. Firstwords Christmas
This one actually DOES teach. I was thrilled when Janey got into it. You get mixed up letters of a word, and have to put them in the right place, like a puzzle. When you do, the app says the word and moves a picture around, and makes a sound. Janey has played this for hours. Over the year, I've seen her ability to match letters increase hugely, partly because of this app. There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.
7. FindMe (autism)
This is the only app specifically designed for autistic kids that Janey has gotten into. You find a little boy in an outdoor setting that gets increasing busy as you get better. When you have found him five times, you get a dancing shapes reward. Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat. I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at. If she had to find letters or numbers or shapes, I think she'd be motivated to do so.
8. Noodle Words
This is a very, very well designed and cool app. You open a magic box of words, pick a word, and then play with the word. For example, "surprise" lets you get all kinds of surprises by touching it. There are little guys at the bottom of the screen that interact with the words. It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with. I wish they'd expand this to much more words.
9. GoFun
Here's one of those "why in the world does she like this?" apps. It's a puzzle app. You pick a picture and then it turns into a puzzle to do. The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures. Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over. She never finishes it. There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then. I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.
10. Working on the Railroad
Another app I wish was better, but one Janey likes a lot. It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc. The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.
So there's her list. This is no means a list of the best apps I've found. There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad. I'd love it even more if Janey liked more of those apps. If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes. I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun. If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too. But the designer would have to actually understand autism, or at least Janey's form of autism. They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents. You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them. Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours. That's life in Autism City, I guess.
Wednesday, May 9, 2012
There IS progress...
Sometimes it feels like Janey isn't making progress at all, but lately, I've been thinking about the ways she really is progressing. The ways can be subtle and hard to notice, but they are there.
Reports from school lately are encouraging! Mr. Ken, her ABA specialist, told me this morning he's going to start adding more names to a list where Janey finds her own name, as she's getting better at it, and her special ed teacher wrote yesterday that Janey was doing some great letter identifying! I love hearing things like that.
At home, the big thing I've noticed is how much better Janey listens and follows what we say than she used to. I can tell her "close the fridge and bring me a spoon, and then I will give you ice cream" and she'll do all I have asked, if she's motivated. She will pick up on little parts of what we say. I told Tony the other day I was going to take a shower, and Janey loves to have a shower now and then. She managed a sentence that was original to let us know that---I can't remember it exactly, but it was something like "I want have a shower now"
She also shows good planning very often. She knows what has to be done first before she gets what she wants. Last night, she was very eager to go outside, but was in her nightgown getting ready for bed. She went and found some pants, and put them on, and came to us and said "You want to go outside" Pronoun reversal and all, it was great, although we still didn't go out. This morning, she had a notion it would be fun to stop at the chip store on the way to school. I wasn't getting her ready as quickly as she thought I should, so she went and found two socks and brought them to me. They were unmatched, as our socks often are, but I was impressed she knew she needed socks, and also that she understood numbers well enough to know she needed two. We still didn't stop for chips!
The negative part of me looks at all this and says---yeah, she's seven. She can do things that would be fairly normal for a two year old. But the positive part of me knows they are progress, they are steps that are necessary for her to work her way (and our way) toward things being slightly easier for her.
Some of it, the feeling of progress, can't be captured well in words. She just seems somewhat more self-possessed, somewhat more aware of herself and of the world. Not always---sometimes she still seems completely unconnected to us or anyone else, but fairly often. She is looking older, and acting a little older. I am very proud of her. Nothing comes easily to her, or almost nothing. It's all work, and I need to keep looking for signs that her efforts and ours and the schools are working. It helps to keep us all encouraged.
Reports from school lately are encouraging! Mr. Ken, her ABA specialist, told me this morning he's going to start adding more names to a list where Janey finds her own name, as she's getting better at it, and her special ed teacher wrote yesterday that Janey was doing some great letter identifying! I love hearing things like that.
At home, the big thing I've noticed is how much better Janey listens and follows what we say than she used to. I can tell her "close the fridge and bring me a spoon, and then I will give you ice cream" and she'll do all I have asked, if she's motivated. She will pick up on little parts of what we say. I told Tony the other day I was going to take a shower, and Janey loves to have a shower now and then. She managed a sentence that was original to let us know that---I can't remember it exactly, but it was something like "I want have a shower now"
She also shows good planning very often. She knows what has to be done first before she gets what she wants. Last night, she was very eager to go outside, but was in her nightgown getting ready for bed. She went and found some pants, and put them on, and came to us and said "You want to go outside" Pronoun reversal and all, it was great, although we still didn't go out. This morning, she had a notion it would be fun to stop at the chip store on the way to school. I wasn't getting her ready as quickly as she thought I should, so she went and found two socks and brought them to me. They were unmatched, as our socks often are, but I was impressed she knew she needed socks, and also that she understood numbers well enough to know she needed two. We still didn't stop for chips!
The negative part of me looks at all this and says---yeah, she's seven. She can do things that would be fairly normal for a two year old. But the positive part of me knows they are progress, they are steps that are necessary for her to work her way (and our way) toward things being slightly easier for her.
Some of it, the feeling of progress, can't be captured well in words. She just seems somewhat more self-possessed, somewhat more aware of herself and of the world. Not always---sometimes she still seems completely unconnected to us or anyone else, but fairly often. She is looking older, and acting a little older. I am very proud of her. Nothing comes easily to her, or almost nothing. It's all work, and I need to keep looking for signs that her efforts and ours and the schools are working. It helps to keep us all encouraged.
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