On being noticed, or not

I read this article yesterday, and parts of it felt familiar to me, especially the eloping part. I could picture Janey at a carnival, just randomly running away from me. I would never be able to relax and enjoy the atmosphere.

What most struck me, though, was the differences between how Janey is treated and how the young boy in the article is treated. I never feel Janey is ignored or seems invisible, at school or in general in the community. Sometimes she's noticed more than I wish she was, as she is making odd noises or acting in other unusual ways, but regardless, she isn't ignored. I was reflecting on why that might be the case, and came up with a few reasons.

One is her exceptional school. It's an inclusion school in a true sense. Janey is part of her class and the school. She is one of the students. This is demonstrated in a million big and small ways. I was reminded of this the other day, when I finally put a name with a face of the only boy in the class Janey talks about by name all the time. I was telling his grandfather about how much Janey loves him, and the little boy said "Janey repeats what the teachers say all the time" I held my breath a little to see what the boy's take on this was, and then he said "They say that means she's listening!" I felt so, so happy. The teachers had found a way to put a positive spin on echolalia, and to make it a trait that first graders are supposed to have! Another example of inclusion---her special ed teacher telling me about a day when Janey was dawdling at her work, which was doing a puzzle. I can just picture it---when Janey knows she has to do something she doesn't want to do, she can be incredibly slow! Then it was time to line up for recess, and Janey jumped up to line up, but the teacher sat her back down, along with other kids who hadn't finished their work, and told her she needed to do the puzzle first. She worked fast then! I loved that---she was held to the same standards as the other kids. The work was modified, the standards weren't. Nothing would set a kid apart like it seeming like they get special treatment!

Another reason Janey doesn't get ignored is probably just luck. She is a girl, when most kids with autism are boys. She stands out in that way. She also looks "regular". You would not know by looking at her that she is autistic, but once you see her in action, it's pretty obvious. That interests people, and they notice her. I don't like staring, but I don't mind attention to her. It gives me a chance to educate people a little. More and more, I tell people "she is autistic" I feel like that little moment of education is important. It puts a face to the news items on autism.

The other reason is probably just Janey. I think often about how autism isn't all of her. Her natural personality is a bit extroverted, or at least non-self-conscious. To my eternal astonishment, I have raised three extroverts, and three kids not afraid to perform, to dance, to sing, to stand out. I am the kind that usually strives to not be noticed, and they are not like that.

It scares me a little, Janey not being ignored. It's outside my comfort zone. But it's how she is, for better or worse, and it's something I hope I can make a positive trait.

Why? The most unpleasant side of autism

If you have a child with autism, you might have guessed what I'm talking about. Yes, indeed, the lovely topic of diaper content spreading around. I'm trying to be delicate here. Basically, fecal decoration.

Janey has gotten better about this. There was a time when we were near despair over it. It was happening most every week, and happening badly. She was creative---stuffing it down air vents, rubbing it in hard to the wood floor, hiding it where you could smell it but not find it---all sorts of fun. I don't know if it was growing up or our reactions or what, but it's not as bad. However, today was a relapse. Janey was playing iPad nicely. We could both see her and hear the music. And so, that momentary second of guard being let down. She took advantage of it to decorate the whole screen of the iPad. Badly.

Thankfully, I invested in a industrial strength cover for the screen and the whole device, and I was able to clean it off separately and no real harm was done, except to our patience. We had a long talk with Janey. A new strategy---figuring that learning for her takes a great deal of repetition, we initially spoke harshly and put her in time out, but once things were clean, we worked hard---had her repeat our phrases about "never touching stinkies" and "never putting stinkies on the iPad or anything else", had her say sorry, got her to answer whether doing that to the iPad was good or bad and if it made us happy or angry, did a little drama recreation where one of us pretended to do the deed, etc. Janey seemed to get it. We put the iPad away, and hoped we had gotten through.

No such luck. She found it, and redid exactly the same thing, not an hour later. This time we were probably less progressive with the whole reaction, and just resorted to sharp "NO! NEVER AGAIN" and time out. And some tears, on our part.

The question is, WHY? Why do autistic kids have the urge to do that? It seems like something that would just be against human nature, that you would have internal regulation to tell you not to do, even if you are not able to think it out reasonably. We try to keep the house full of sensory toys. We change her quickly. But still, when she has a chance, she makes the horrible mess now and then. And I know we're not alone. I know it's a problem for many parents of autistic kids. Does anyone know why? How can it be stopped? Can any of the money for research be put into THAT research? It would certainly improve some lives.

The Chips Store

Here's Janey getting her salt and vinegar chips from "the chips store", aka the CVS. She knows right where to go to get them. The other day she thought she'd try some sour cream and cheddar instead, which surprised me greatly, but today she was back to her old faithful. Then she thought she'd get creative and grab a Hershey's Almond---this was after I had paid, and she tried to open it, rendering it unsalable. So I went back and bought it. The cashier said "Don't you want one that isn't all crushed for her treat?" and I said no, she crushed that one so I'd buy that one, but she certainly wasn't getting it as an additional treat! The cashier looked a little troubled by my strictness. She meant well, but that's a message I'd rather not send "Can you give me a fresh new Hershey's Bar to replace the one my daughter crushed when she was attempting to steal it? I don't want her treat to be all mushed!" Of course, Janey doesn't get stealing, but she does get that we don't open things in stores and we don't get things unless I say it's okay. I thought about not letting her have the chips, either, but those were a reward for being very good at the library, and that is an example of where the autism does modify my parenting. I don't think at this point Janey would have had any idea what not giving her the chips had to do with her mushing the candy. She did get it about the candy---she asked for it over and over and I told her over and over why she couldn't have it, and why it was going to be a treat for Freddy instead. It all gets complicated, and who knows if I am handling it all correctly, but there's no guidebook for this kind of thing. We are all making up the rules as we go along.

Autistic behavior or naughty behavior?

One of the big challenges with Janey is figuring out when she is doing something due to her autism or when she is just plain being naughty or bratty! It's important to be to figure this out when possible, as I don't want to let her become poorly behaved in addition to being autistic. I think (I hope) this is possible. I don't see myself as a strict parent, but more a firm one. With my boys, I made sure they knew "no" did mean "no", not really so much by punishing them, but by following through---if I said we were leaving the playground and they ran from me, I went to get them and we got right in the car. They also learned that if I made a decision, it was going to stand, and begging and asking over and over didn't work. Politeness was and is important to me. They learned to say Please and Thank You, and I often still get comments on how polite they are, which means a lot to me. They were expected to be respectful of Tony and me, not in a way like we are some scary authority figures, but to the extent they did realize we were the parents and they were the kids.

I don't write all this to self-congratulate, as I think it's starting to sound, but to explain what my parenting style is, and how I want to make it be with Janey, as much as possible. It's hard. There are times when her behavior has nothing to do with naughtiness or brattiness. It has to do with a sound that is scaring her, or internal demons bothering her. But other times, she simply wants her way, and shows that in ways that are changed by her being autistic, but still are ways to try to get what she wants.

For example, the other night we got Chinese food, and as we often do, we tried to watch a TV show on Netflix as a family while we ate. Janey wanted to watch one of her Baby Einstein videos, and was hugely not pleased we wouldn't let her. She started hitting the buttons that change the mode of the TV, she found the remote and turned the TV off, and when all that didn't work, she started screaming a song from one of her videos at the top of her lungs, as if determined to make sure we couldn't enjoy our show. We didn't give in---we put the show up louder and told her she was in time out, and made her stay on the couch. It wasn't a fun meal, and we all probably would have had a lot more peace just putting on her show, but that was a time that she needed to see she couldn't have her way.

However, there are other times when she is falling apart, perhaps because she's tired, or having a bad day, when she will act out and I know it's not her being bratty. Sometimes when she is very upset, she'll ask for a certain show or a certain food. It's not really what she wants, and if we give it to her, she screams and throws it or turns it off. At times like this, I try very hard to stay calm, and to simply distract her and get her to sleep or settle her down. It's hard to explain how I can tell the difference, and maybe sometimes I can't really, but I think I usually can. She doesn't really hear us in that mode, and she wouldn't benefit from reason much.

I am proud of some of Janey's behavior lately! Yesterday she wanted her chip store run. I told her we had to go to the library first, she had to stay with me in the library and be quiet, and she had to be good at the store to get her chips. She did all of those perfectly. The line at the library and the store were both long, but she held my hand and waited patiently, and actually sang a cute song to pass the time at the store. She didn't try to open the chips early, she didn't lose it at all. I felt so, so happy, and praised her hugely. Times like that make me feel there'll be a day when we can eat at restaurants with her without fear, or take her to other public places without bracing ourselves for disaster.

It's going to be a long haul teaching Janey how to behave. I need to keep looking at my reactions to her actions and thinking hard about how I handled different situations. I hope I never stop doing that.

A special teacher

I don't write much here about William. I respect his privacy as a almost senior in high school, and he doesn't want me to talk a lot about his early years. But the basic facts are that he was originally diagnosed as autistic, later as having Aspergers, and later still as having nothing at all, except being fantastic. He currently has an over 4.0 average, is first in his class, is being recruited by some great colleges, will perform and sing a song this weekend at his school guitar show that he wrote himself---I could go on and on. I am very, very proud of him.

And a huge part of what he is today is thanks to a wonderful, amazing teacher---Amy Gailunas. We had the great good luck of having her for William's second grade teacher at the Henderson School (then the O'Hearn School) the first year he attended there. She saw his potential, saw the best ways to help him and most of all, just plain loved him. She thought he was incredibly cool, which he is, and she celebrated all that was great about him instead of concentrating on the difficult traits. I would write a lot more about that year, but I'll respect William in not doing so. But I wanted to share this link, as Amy is getting a richly deserved award --- here's the link.

A great teacher can change a life in so many ways. Janey currently has two great teachers, and she will have Amy in the future. Tony's 5th grade teacher was the first person to tell him he was smart, and to guide him to apply to Latin School and eventually to get a full scholarship to an Ivy League college---no small thing for the son of immigrants who while being very, very bright people, didn't speak English and had not finished high school. I had some amazing teachers all the way along---Mrs. Berry, Mrs. Reinhardt, Mr. Cooke, Mrs. Oliver, Mr. Glavin, Mr. Marcoux, as well as many more---and I can't say what my life would have been without them.

So a huge thank you to Amy, and to Ms. McCann and Ms. McLaughlin and to all the great teachers out there, past, current or future!

Once in a while, animals like soda

Every now and then, Janey does or says something that is so unlike her usual ways that it is almost weird. It's great, often, to hear or see, but it's also very frustrating. It makes me feel there's parts of brain that she just can't usually access, and makes me think if I could figure out how to access them, she could make huge jumps forward, but for the life of me I don't know how to do that.

Yesterday, Janey kept saying "What do caterpillars drink?" I assume that is something they talked about at school, or that she saw on TV or in a video. It was like most phrases she uses---she wasn't looking for an answer, just liked saying it. I answered anyway, of course. I said "I guess they probably like to drink water" or something along those lines every time she said it. Then, after about 20 times during the day of it being said, she answered it herself, and said "Caterpillars drink soda." I said "I don't think they drink soda. Animals never drink soda. They don't like soda. Only people drink soda" She looked at me straight in the eye, and said "ANIMALS LIKE SODA!" I laughed through my stunnedness, and said "I really don't think they do!" and she repeated it, again, looking at me directly and sounding almost angry "ANIMALS LIKE SODA!" It reminded me for all the world of Freddy at that age (or at this age, too) having to be right and having to have the last word! I was thrilled.

To get how unusual a response like this is, you would have to probably see Janey and listen to her for a few days. She doesn't talk in that way. She is just not responsive in that way. She doesn't look at me to emphasize a point. She isn't direct like that. Except...she was. Some maybe sometimes animals DO like soda.

"Thank you, Ms. Donna"

When I drop Janey off at school early a few days a week for early ABA with her fantastic ABA therapist, Mr. Ken, he works on having Janey say goodbye to me. She almost never does it spontaneously, but when prompted, she will say something. It's not always what we are looking for, though! Wednesday, instead of "Goodbye, Mama!", we got "Thank you, Ms. Donna!" Ms. Donna is Janey's PT, and Janey adores her, so I tried to not feel offended---it's a compliment, really! Today again, Janey said goodbye to me with "Goodbye, Ms. Donna!" but there was a big grin on her face. I got the feeling she might be kidding around with me.

However, this does illustrate what gets frustrating with Janey's speech. It's almost always scripted. When she uses the right script, it's great. But sometimes the lines that come to her head and out her mouth are not what she really wants to say. I see it a lot when she's upset. She'll ask for things she doesn't really want "I want cheese cutter! I want Kipper! I want snuggle on Mama's bed!", because those are familiar phrases to her, and in the midst of the emotion, I think it's all that she can retrieve. The very, very rare utterance that she is creating not from a script has a totally different sound to it. It's slower, in a different voice and is much more awkwardly said.

I think the way Janey can say so much with scripts sometimes disguises how little she really can talk meaningfully. We have never had what I'd call a conversation. It's vanishingly rare for her to answer a question. Her talk doesn't serve to do much of what language is designed to. It either asks for specific things or repeats things she has heard. An example is the other day after school, when I couldn't find her backpack. I asked her where it was, but knew I'd never, ever get an answer. She might have known, but that is not a question she could answer. Nor is such everyday things as "How was your day? What did you do at school? Who did you play with today? What book do you want to read? What do you want to wear? Do you like the kitties? Is it rainy today?" All everyday questions, but not ones Janey can answer, at least not with a huge amount of scripting and prompting.

As a result, any time I'm not with Janey is a bit of a black hole for me in terms of knowing what she has done and how she has been feeling. Her school is great at keeping me informed, but there is so much that happens in a day that just isn't the kind of thing that can be written down or reported to me. Even when I am actually with Janey, her real feelings are often a mystery to me. I can figure that crying means she is sad or angry or frustrated, that laughing means she is happy or excited or manic, but that's about as narrowed down as I can get it. Some day, I'd love to hear Janey tell me one of her dreams, or tell me something funny that happened at school, or tell me about a TV show or book she loved.

I'm very lucky Janey does talk at all. I need to keep that in mind, even when I am called Ms. Donna!