Saturday, October 29, 2011

60 Minutes iPad segment

The segment on 60 Minutes about autistic people using iPads seems to be generating a huge buzz lately. I finally watched it yesterday. A few reflections....

I really felt for the man with autism who had been using a piece of paper, pointing to letters, to communicate. It does seem there have been things out there for a few years that would work better than that, but it was wonderful to see him using the iPad. He was obviously ready for it.

I was less sure about the kids shown. A few of them reminded me of Janey. She uses an iPad a little at school, and I asked her teacher if she thought I should get her one. She said to wait a while and she could tell me better, which I appreciate. Janey is not really ready to fully use the language type program shown on the segment, but I liked a few things I saw there a lot---the emotions app, the vocabulary app, etc. I have a feeling Janey could be like the boys shown who didn't talk much at all but was able to identify all kinds of vocabulary words. I'd love to see Janey use that particular program. She did something similar with a language test one time---pointed to words I had no idea she knew, like "castle" and "squirrel". But I could also see her just getting obsessed with the button that takes you back to the menu. We'd have to cover it somehow.

I hope iPads don't become the next big thing in autism---the thing that is supposed to fix everything, like taking dairy out of the diet, using ABA, the bad old days of Facilitated Communication, etc. As the segment correctly pointed out, they aren't going to be something every autistic kid is interested in. And it will be annoying if for years, people assume somehow autism has been "cured" by iPads.

I still think I might get an iPad for Janey, if I can afford it. It's something that wouldn't be a waste of money, because if she has no interest in, I sure would, or Tony, or the boys. That's a nice thing---that it's not some piece of equipment that is very specific. Janey is attracted to my iPod Touch, which might be a good sign.

And a last reflection---the expense. I'll find a way to get an iPad, if I need to, I'll go into debt or whatever more than we already are. But there are many autistic kids out there with no way to get one, and I'm sure there are many kids in school systems where they will never be given one to use at school, either (Janey's school use is on a shared one). I wish everyone who wrote about their autistic child considered the money issue. I can't say how many autism books I've read by people who seem to have unlimited funds, and never mention that many people could not dream of setting up home ABA programs or doing horse therapy or moving to some other country or being in the "right" school distract. I hope if somehow I ever get more money, I will use it to help kids with autism that don't have many resources. Thank you, Doug Flutie---he's someone doing exactly what I would try to do, if I could.

Tuesday, October 25, 2011

A glimpse at another Janey

Yesterday when I went to pick up Janey at after-school, she was out in the courtyard. I went out to call her in, and saw something that will stay in my mind forever, I think. She was playing ball with a group of kids. They were throwing basketballs and chasing after them---a kind of modified soccer. Nothing formal, the kid of recess game kids play. And Janey was playing with them, completely with them. They weren't "including" her, she was completely like all of them. She ran when they ran, laughed in a non-manic, non-autistic way, was red in the face from the running, happy and coordinated and PART OF THE GROUP. I stood there like in a trance. It was like I had somehow entered a parallel universe, the "normal" Janey universe. She was graceful and athletic---much more so than either of her brothers would have been in a similar situation. She was just another little girl playing.

And then of course the over-thinking took over. I questioned myself as to why I was so overwhelmed and happy with what I saw. I felt guilty---do I wish the other Janey, the real Janey, away? Do I just give lip service to celebrating her uniqueness---do I really just want her to be normal? And of course, a little, I do. Autism is hard. It's hard for us, it's hard for her. But I think there was something else there.

I thought about my proudest moments with the boys. They are moments when they did something I could never do---when they showed me who they were. With William, it was seeing him play guitar and sing on stage. With Freddy, it was seeing him act. They are the moments when you realize they are amazing people in their own right, not because you made them that way. And that was what this moment with Janey was like. I couldn't be part of a sports moment like that. No way on earth. The boys couldn't either. I've never seen either of them at ease playing sports. It's not them. But it's Janey. We've always realized she got the gift of being athletic that shows up very rarely and randomly in both our families, like red hair showing up from some long ago ancestor. It's completely apart from her autism. And that was the gift of what I saw. I saw a Janey that wasn't labeled, a Janey that wasn't a special ed student, or a medical mystery, or a case. It was just Janey, doing something she was good at. And I'll never forget it.

Friday, October 21, 2011

This and That

It's been a semi-smooth period with Janey. She had about a week of off and on crying days, which seems like a year when it's happening, but which was a lot shorter and less intense than in the Bed Old Days. She is loving school, really loving it, and I love her classroom and her teachers. I met with her special ed teacher today, and was so happy with everything she is doing. I like her goals and her approaches. She really seems to understand Janey, and to agree with me about what it's important for her to learn and what isn't. I like her regular ed teacher very much too. I think Janey was ready for 1st grade---the slightly more structured setup seems to agree with her. She is still learning very slowly, at least the things we try to teach her, like to recognize her name, but that is how she learns.

Tonight we saw her increased computer skills at work. She was annoyed we were watching The Office when she felt it was her time to watch something, so she went to the computer, hit the Start button, found Dr. Seuss' ABCs, clicked on it to start it, and picked "Let Me Play". Freddy and I saw the whole sequence. We have seen the results of such computer work before, but never quite caught her in the act and saw how easily she does it. She watched YouTube like a pro, clicking on the pictures of the video she wants to see next. But those are things she is very motivated to do. If she were motivated to writer letters, or read her name, I think she could, but I don't know how to motivate her for those.

I continue to try to figure out her speech. One thing I've noticed is that instead of using the word she must have heard much more often than the wrong work, if the wrong word is one she figured out herself, that's what she uses. For example, she calls cheese "cutter" as she sees us use a knife to cut it (and cutter itself is a word she worked out). She calls towels "scarves". When she gets out of the tub, she yells out "I want scarf!" I guess a scarf goes around you and keeps you warm, like a towel. But whey does the wrong word persist? I think it has to do with her having to think very hard for anything but rote speech. She has to think "What's that thing that keeps me warm?" and if the first word like that she comes up with is scarf, she goes with it. The other day in the car, she was playing with a necklace and got it caught in her hair. It was a rare time when she had to communicate verbally and quickly---I think she could tell I couldn't see her when I was driving, and she needed specific help. She let out a hodgepodge of words "Pull out my hair! I want necklace! Pull my hair!" She didn't know how to say "The necklace is stuck in my hair!", but what she said was effective.

Not to write about myself, which is not the purpose here, but I had an odd thing happen today, and it made me wonder if Janey ever has similar happenings. I was shopping at my favorite thrift shop, but had an odd feeling in my eye, like I had looked at the sun a bit too long. However, it didn't go away with closing my eye or waiting a bit---it got worse. It was like an outline of a circle that blinked, and has rainbow colors, just on the left side. It kept getting bigger and bigger until it was the whole left side of my sight. I could see other things behind it, but it was very hard to concentrate. And scary, until I realized what it was, a migraine aura. I do get migraines, but I've never had an aura before. And I never did get the migraine, or that WAS the migraine. I researched it and saw when you get that without the headache, it's called a optical migraine. The descriptions and even the artist's pictures of it were exactly like mine. I wonder if Janey gets sights like that, the times she pulls at her eyes. Or if she gets auditory auras, which might be the famous "clicking sound" or "banging sound" she's mentioned during some of her lowest times. I never realized a visual disturbance was that vivid. I thought it was vague, but this was bright and extremely disturbing. Janey would have no way to explain something like that, and it would be terrifying or at least very confusing. I need to research whether there is any connection between migraines and autism.

Anyway, for now, 7 is a good year for Janey. She just seems, most of the time, a little more comfortable in her skin, a little more "home" more of the time. Knock on wood.

Wednesday, October 12, 2011

Detective Work and Phobias

Life with Janey involves a lot of detective work. She doesn't give us a lot of clues about why she is feeling the way she feels, or why she does the things she does. She was in a wonderful mood for several weeks, and then Monday she fell part. She falls apart spectacularly, with a day full of screaming and tantrums. I've got a couple theories about why. It was Columbus Day, and there was no school. I think she has a counter in her head, although she doesn't seem to consciously get numbers, but I think she knew it was Day Three of the weekend, and that was just plain wrong. She was supposed to be in school, and she wasn't. I also took her to Kohls to shop for clothes. That is something I have almost never done. I'm not a shopper, and if I do shop, I don't bring her along, but this particular time, the circumstances fell together and I had to. She didn't enjoy it, to say the least. She made her half crying-half laughing sound the whole time we were in the store, she got on the floor several times for screaming fits, she put on her extremely angry face a few times and yelled---it was pure joy, let me tell you. Nothing as fun as lots of people staring at you. I always want to say "Have you NEVER seen a kid with autism or retardation before? There's lots of them out there, you know! Sorry I had to expose you to such horror!" Of course, that's just mean, because most of the people are not trying to be rude, but I wish they'd smile at me, or look away more quickly, or something.

After searching for reasons for the Monday Meltdown, we moved on to Tuesday, with school, and a happy Janey. After school, I took her for ice cream, and while we were walking down the street, all of a sudden she stopped short and curled up in almost a fetal position. I thought she had hurt herself somehow, but then realized the problem was a dog being walked toward us. Tony had mentioned she is scared of dogs now, but it was the first time I'd seen the extent of it. She was TERRIFIED. Terrified to the point she couldn't even cry---she was barely breathing. I talked reassuringly as much as I could "That's a nice doggie. It's not going to hurt us. It's on a leash. It's a sweet doggie!" (which it did seem like). But she didn't relax until the dog was past us. We saw two more dogs on the short walk back and forth to the shop, and both times, the reaction was the same---absolutely frozen terror. I don't know where she got that. She used to LOVE dogs, to an amazing extent. I tried this morning to find a picture I have of her surrounded by four Rhodesian Ridgebacks, which are HUGE dogs, extremely happy just to be with them, when she had just turned 3. I wonder if it's a good sign, almost---her awareness of what's around her is growing, and she is noticing dogs. That might be another piece of evidence to look for when she is upset----a dog outside barking? A dog on TV? Even a dog just mentioned?

I'll say this---Janey keeps my mind active. You can't coast as her mother. You have to be on alert always, figuring her out. I don't think I'll ever get her completely, but I have to keep trying.

Sunday, October 9, 2011

Is there sadness?

I recently read a blog post by a man who had written a book about his autistic son. He was responding to someone who said his book was too positive, that it was impossible that he could be without sadness or regret about his son. I haven't read the book, although I plan to, but the question and his response struck me. He said he really hadn't felt sadness or regret. I must say that's incredible, and I can't say the same, but I can understand some of what he was saying.

I do feel sadness about Janey a lot. Some of it is for her, and some of it is for me. I feel sad about the things she might not ever be able to do. One of the biggest of those is reading. I love to read. Reading is a huge part of my life, probably my biggest pleasure outside my family. I can't even imagine a life without reading. So that makes me sad. I feel very sad she might not be able to marry and have children. As a woman, that has been the best part of my life. I feel sad she may never have a best friend, never have a love affair, never go to college, never live on her own. I know there are people that live happy lives without ever doing any of those things, but I think most people would agree they are a big part of life, and I have sadness she won't (probably) do them.

And I feel sad, sorry, for myself. I probably won't be by her side as she gets married, or has a baby that will be my grandchild. I won't be able to guide her through the excitement of a first crush, or introduce her to my favorite books. I don't get the fun of having other kids ask her over to their house, which is a main way mothers socialize with each other, also. She isn't into collecting Littlest Pet Shops, or American Girl dolls, or Barbies. That might seem like a silly thing to regret, but I do. I looked forward to sharing things like that with a daughter, things I like and wanted to do with a daughter. Of course, there were no guarantees any of those things would happen with any daughter. But still, I will be honest and say that those things make me sad solely for myself.

But I can honestly, honestly say that there are many unique joys Janey brings me that are special to her, that might not be the case with the other, imaginary daughter I don't have. Janey loves me without reservation. There isn't the tension many mothers and daughters have, and there probably won't ever be. I don't say about Janey what parents often say, and what I have come to see is truly a hard part of parenting "They grow up so fast!". Janey grows up slowly. We get to enjoy each stage, and look forward to each new one, without them all rushing by. I appreciate her beauty, which seems shallow, but I do. I like being able to dress her, and to be honest, it's kind of fun that she usually lets me have her wear what I want to have her wear. I love her unfettered joy in the things she loves---how hearing a song she likes or seeing a show she likes or eating food she likes can make her so happy she dances around the room. I like snuggling her as she falls asleep. I like her quirks, sometimes---the odd little things she loves and enjoys, like Kipper or raw onion or Christmas carols. I love so many things about her.

So---yes, there is sadness. I wouldn't lie and say there wasn't. But there is happiness, too. That is the case with all children, I am sure, but I am pretty sure the sadness is often more with a child with special needs. That doesn't mean we don't love them as much as it's possible to love them---maybe even more than we would without the balancing sadness.

Wednesday, October 5, 2011

Wow! What is it?

Today after school, as we were walking to our car, I told Janey I had a treat for her in the car. She said "Wow! What is it?" And that, my friends, was one of the best moments of my life so far. To have Janey casually say that, a totally appropriate response, in a completely "regular" tone of voice, was nothing short of a miracle to me. She has NEVER EVER said anything like that before. I don't think she's ever asked me a true question before, to say nothing of one about something that "normal" to want to know. It was fantastic. I was able to tell her special ed. teacher right away, as we were passing her, and she understood what a breakthrough it was, and said they had been working on that kind of question.

That capped off a few great days. Janey has been cheerful, talkative, just a lot of fun to be with. School is going extremely well. She seems eager to go each day, and happy when I pick her up. She is happy at afterschool, so much so the principal took pictures of how happy she was and sent them to me, which I very much appreciated! Both her teachers seem to get her, and care for her, and want her to do her best. I know enough not to take that for granted, from so many other parents I have heard from, but in my own life, that kind of teaching has been the norm, and I am very lucky for that.

I'm always unsure exactly what causes things to go well, just as I am unsure what causes them to go badly. I think a little success breeds more success. A few other moments lately have been making me think about how important even a little communication ability is. In the CVS the other day, Janey picked out a big bag of Funions (the crispy onion things) and wanted them. She was so cute with it I had to get them, although they are not really a food stable I like. But it made me think how that's the very thing of it---if she hadn't been able to get it across to me she wanted them (in this case by picking them up and handing them to me) I never would have gotten them, or realized she even liked them. She would be more subject than she already is to my guesses as to what she likes, which I am sure are often wrong. The other day, she wanted to watch Kipper on Netflix. She can say "I want Kipper" well, but not the episode she wants. Sometimes she quotes a line from the one she wants, and we guess, but more often, we put on the wrong one and she throws a fit, and we all get frustrated. This time, she said, slowly and a bit painfully as she often says new things "Head in a box". We had no clue at first---it sounded a little horror-filled. Then we looked at the little pictures that go with each episode, and one showed Arnold, Kipper's little pig friend, with his head poking out of a box---part of a magic trick Kipper does to him. It was exactly what Janey said---a head in a box. Tony and I looked at each other in amazement, and put on the episode. Who knows how long that had been the one Janey wanted to see?

It makes me happy she is learning how to ask for things she wants, but it also makes me a little sad, thinking of how often she can't, and of the many, many other kids out there that can't share what they are thinking or what they want.

A PS to this one---Tony just came over and hugged me, and Janey said "Give me a hug too!" Another amazing thing to hear.