Friday, May 27, 2011

How Kids See Things

The other day, when Janey and I were walking to our car after school, a little girl who used to be in Janey's class before Janey got held back stopped to talk to us. She said "I didn't know Janey was seven!" I replied that Janey wasn't actually seven yet, she was six. As is often the case wiht kids, that didn't deter her, and she said "I didn't know Janey was six!". Then a boy that also used to be in Janey's class said "If she's six, why is she sucking her thumb?" I noticed Janey was in fact sucking her thumb, which is not a common habit of hers. I didn't have time to think about an answer, and said "Sometimes Janey does things that younger kids do". That was the whole conversation, but it really got me thinking. I've wondered how the kids saw Janey---how they process her behavior. They aren't old enough to get autism, but they must notice that she is different---she can't do what they do, she cries a lot, she isn't too with the program. And I realized what they were saying is a clue---they probably assume she is younger than they are. Although they might know on some level she isn't, they might just see her as a younger kid. Kids don't always question odd things like that---they might just think for whatever reason the school put a two-year-old in their class. It's a thought I liked. It's something I've been thinking about lately---how many of Janey's behaviors would be quite typical for a two year old. And it's something kids can understand---they have younger siblings, or know younger kids, and that's a way they could easily frame her behavior. It might be a good way for adults to see it sometimes, too.

Wednesday, May 25, 2011

Delayed Echolalia

Delayed echolalia is a fancy name for repeating back what has been heard at an earlier time. It's a huge part of Janey's talking---I'd say the majority of it. And I think it's what often makes people think there is a hidden world in there, that suddenly Janey or kids like her might all of a sudden talk in full, meaningful sentences. Because she DOES talk in full sentences---when she is engaging in delayed echolalia. It can be startling to hear even for me---all of a sudden, she's saying something complex, with emotion. This morning "I lost Polka. I'm terribly sorry, Grandpa!...Well, I'm proud of you, Angelina!" then "Do you think she needs a diaper change? You were supposed to be babysitting and you SAT on the egg?" "We came all this way to see the Pyramids!" All lines from assorted videos. They are said with tons of expression, with a clear tone and in a voice I don't hear at other times. Once in a long while, they are thrown out in appropriate situations, but I think often that's because she hears a key word that starts her off---we tell her to say she's sorry, and she recites a line about being sorry, for example.

I wonder if the d.e. (as a shortcut) is a placeholder sometimes when she isn't talking a lot otherwise. Lately her talking is at a very low ebb. Lots of crying, lots of single word demands, using a very few words. But also the d.e. all day. Maybe it keeps her able to say all the sounds, to use all the intonations, until the real talking kicks in again for a while. I don't mind it---it's interesting to hear, and a lot more bearable than all day whining. I hope it does serve some kind of purpose. If nothing else, it certainly is an illustration of how interesting the human mind is, and the human autistic mind.

Monday, May 23, 2011

Developmentally Disabled

I've heard a lot of discussion lately about the word "retarded". I've touched on it before---in some ways, I wish it could be reclaimed as an acceptable word. I would NEVER want it used as an insult, toward Janey or toward anyone else. One of my proudest parenting moments ever was when Freddy told me that when kids at his school were throwing around "retarded" insults to each other, he stepped in and said "Hey, guys, don't say that. I have a sister who really is retarded, and it's not something to joke about". That took a lot of guts. And he gets it---that in the right situation, it's a descriptive word of a developmental level. More so than one of the more used euphemisms, "developmentally delayed". I don't like that, because it implies that at some future date, the child will catch up. If a bus is delayed, that doesn't mean it's NEVER getting there. And of course, like every mother on earth, I dream that someday, Janey will catch up completely, go to Harvard and become president. But I don't think she will. I think she will make progress, but I think she will always be behind. So if it's not correct to say "retarded", perhaps "Developmentally Disabled"? That's a mouthful, but more accurate, I guess.

And why does it matter? Well, because her other label, autistic, includes such a huge range. I know people "on the spectrum" that are brighter than most of us would ever dream of being, in our wildest dreams. I have a son originally considered to be on the spectrum who is currently first in his class. And the wide umbrella of the spectrum means that saying Janey is autistic sometimes leads people to assume she is a far different person than she is. You would hope they'd just get to know her and know who she is, but not everyone in the world is going to be able to do that. And I've actually had someone say to me "Oh, kids with autism are so smart!" And some are, and I'm glad that people know that. And Janey is too, in certain ways. But in the ways that get graded, she is not.

And so again, why does it matter if people know that? Well, imagine you had to explain to a child they needed to hang up their coat and sit down for lunch. It makes a big difference if the child can understand a statement like that or not. Or if you wanted them to pick their name out so they knew where to sit. You would want to know if they are just being stubborn or shy when they don't, or if they can't read. What if you assume a child of 6 should know not to run toward the road, or pick up sharp objects? What if a child is considered rude for not answering questions? With all those situations, it would be helpful to have a quick way to explain that Janey can't read, or understand much of what is said to her, or follow safety rules. Helpful, but I guess not crucial. I've used the short answer version quite a few times---"Janey is autistic and doesn't talk much". That usually works.

I've noticed lately that Janey is doing a lot of things two year olds do. She wants to take off her clothes a lot, which is a "two" thing, she dumps out water or small items all the time to see and hear what they sounds like on the floor, and she is enjoying saying "NO" more. Today I took her to get Pringle Chips, her favorite treat. I found them on the shelf and said "Is that what you want?" and she answered surprisingly directly---"NO!". She then put on quite an acting job, and looked over every other bag of chips at the store, and finally reached for the very can of Pringles I originally showed her and handed it to me. That's two for you. It was fun to see! And that is making me think again about the "developmentally delayed" label. Maybe it does make some sense, if it's kept in mind at some point the delay may slow almost to a halt. If she's 4 years behind now, we can't extrapolate and think that when she is 20, she will be like a 16 year old. If we do ratios, maybe she'll be like an 8 year old or 7 year old. That would be good.

So, who knows, really? Like so much, the right words, the right term, the right predictions---they are all hard to come by. Janey is Janey.

Sunday, May 15, 2011

Never compare

If someone asked me my number one piece of advice for raising a child with autism (not that anyone has), I'd be ready for an answer---NEVER COMPARE. Never compare your child to "typical" kids, or even other kids with autism, or kids with other challenges like Down Syndrome. Just don't compare. It's a fool's game to compare.

Of course, I break that advice all the time. The worst, the very hardest thing, I've realized, is shows at school. I love the shows, I love the fact that the arts are a big part of Janey's school, but they kill me. I've tried to have a positive attitude about them, and have written here about that, but they are so hard. I am sitting there looking at a huge amount of kids Janey's age, and in my eyes anyway, every last one of them is far more advanced than she is, more with the program, happier...it's very tough. Janey is up there not doing any of the dances, or hand gestures, not singing although I know she could, starting to cry, having to be held by teachers, while it seems like every other kid is putting their all into it. The kids with Down Syndrome are amazing. I love to see their progress. The kids in wheelchairs blend right in---they are totally included. And of course everyone is doing everything they can to include Janey---but she stands apart. I am sure I notice this more than anyone else---everyone notices their own child most.

I guess things like shows are hard because a lot of the rest of the time, I play mental games with myself and simply don't allow myself to compare Janey directly to her peers. When I drop her off in the morning, I love seeing the other kids, and I don't think about how Janey doesn't do what they do. That's her school---the kids are so great to Janey that it seems like she has an important role to play. She is helping them, I like to think, as much as they are helping her. She is different, but not unequal, because everyone is being themselves. Maybe in shows, the fact everyone is supposed to be doing the same thing makes it harder.

Another hard time is the "cold" situation---when someone who doesn't know Janey starts talking to her as if she were a typical 6 year old. That doesn't happen much anymore, as now that Janey is older, I think it's more apparent to most that she isn't typical. She laughs or make noises that are more typically autistic, and more than once, when I have told someone she is autistic, they reply they could tell, that they could recognize it. That doesn't bother me at all. It means that people are more aware of autism than they used to be. It's part of my low-key mission---to tell people Janey is autistic so when they run into another child or adult with autism, they won't think "What a weird person" but might think "There's a person like Janey, with autism". But once in a while, someone will ask Janey questions you'd ask a typical kid---"How old are you?" "Where do you go to school?" "Do you have brothers or sisters?" and that is very hard. I usually jump in and answer for her---mostly because I don't want the asker to feel awkward with the silence that will ensue if I don't. But it makes me compare---those are questions that most 6 year old will answer with ease.

Another tough thing is work on the walls---the papers up on the walls that kids have done. I look at the ones from Janey's classmates last year, before she was held back, and it's like looking at a miracle. They can WRITE. They can READ. They can DRAW RECOGNIZABLE PICTURES. It's amazing. My mind plays a game, telling myself that what THEY are doing is the miracle, not the typical thing, and that somehow Janey is the norm, surrounded by geniuses. Somehow that's easier than thinking about how much Janey can't do.

So, if you can do it, my advice is not to compare. The times I can really do that, it's great. Those are the best moments---when Janey says or does something cute, when she is so overwhelmed with happiness by little things, like us playing with her jack-in-the-box or putting on the video she wanted, or taking her to the grocery store, or giving her chips and salsa, or playing catch with her, or blowing out a dandelion, or letting her pick out a shirt, or things like that. There are so many great moments with Janey that can be enjoyed best if we just think of her as Janey---not a 6 year old who can't do what 6 year olds should do, not as autistic kid, but just Janey---a special person in her own right. I'm not saying I don't want her to be called autistic. I like being able to educate people about autism. But at home, for just us, when we can just enjoy Janey as a family member, a beautiful, funny, interesting little girl who exists on her own, not as an example of anything, well, that's the best.

Wednesday, May 4, 2011

My weakest special needs parenting skill

For some reason today, I got feeling depressed over what I am very bad at doing---advocating. Most especially, lobbying for services for Janey that she needs. No-one has denied me any services---I just got wondering about summer programs and thinking I should check on the progress of Janey being placed in a program. I have no reason to think everything isn't going smoothly, and I know she's eligible for a program and hopefully will be placed in one. But just THINKING about it brought up memories---of when Janey didn't get a full day K1 placement, of when it took almost a year to get her evaluated for ABA, when I didn't speak up enough when she had an ABA therapist that rarely showed up---all kinds of things. None of these were the fault of her exceptionally good school, but rather the fault of bureaucracy---that nameless, faceless system where the squeaky wheel gets the oil, and I am not squeaky. I am horrible at being squeaky, unless I'm faced with a true crisis. I do okay in that situation---I do pretty well. But when it comes to just nagging or requesting or checking, I'm no good. Part of it is I think a Maine upbringing. You don't put yourself out there like that. You don't demand things. You assume people know what you need, and how badly you need it. You are taught young that demanding things, pushing for things, only makes people less likely to do them for you. I'm sure not everyone who grew up in Maine feels that way, but I think a lot more people than other places. I also just feel sometimes like if someone says they are going to do something, keeping on asking them if it's getting done is like calling them a liar---like saying they aren't really doing what they said they would do. And I'm basically confrontation aversive. I hate to push for things. I hate to demand things. And I worry all the time that hurts my kids, not just Janey.

What makes me mad, when I think about it, is that it shouldn't be that way. There isn't any application for getting a child with special needs. No-one asks you first "Are you a go-getter? Are you good at asking for what you need, or your child needs?" If they had asked, I would have said NO---I'm not good at those things. I have some qualities which are good for the job---I don't have much of a temper, I'm fairly patient, I have a bit of a sense of humor for when things get crazy, but I'm not an advocate. And the reason any parent NEEDS to be an advocate is that the resources are limited. There are never enough good slots for the programs that are out there. The very fact that there ARE good programs and not good programs is WRONG. Every child, not just my child, not just special needs children, not just gifted children, but EVERY child should be given everything our society can give them. And don't tell me the money isn't there. The money is there for war, for corporate welfare, for countless entitlement programs, and so there is money for kids. It's crazy not to invest in them. But if you have a "regular" kid, you can dig out a good summer or a good school for them by not having to demand, but just searching, and researching, and finding and maybe paying. I can't do that for Janey.

I think into the future---to wanting maybe someday to find a living arrangement for her, to the closer future---finding a safe and caring middle school or high school. I worry a lot. I beat myself up a lot, and feel depressed a lot about my failings. I wish that it was enough just to love Janey, to accept her and to enjoy her. I can do that part. But it's not enough.