Friday, June 29, 2012

Lucky Janey, lucky me

Janey and I both had such a treat today. She got invited to go spend the day with both her classroom teachers from last year! It was a wonderful, wonderful treat to end a fantastic school year. All reports were that Janey had a very good time. And on top of that, they invited over her summer school teacher to meet Janey! I got to meet her too, and it made me feel much more ready for Monday. I got a nice rest while Janey was there---some time with Freddy, some time to relax and play word games!

That's just one example of the kind of teachers and staff I've been lucky enough to have involved in Janey's life. And I know it's luck. I think almost all teachers do the best they can, but not all schools have the philosophy and atmosphere to attract people like Janey's school does.

And it's pure luck she's there. It's luck that actually goes back to long before she was born, when Freddy was just two. I was looking for a school for William, and visited the Henderson (then the O'Hearn) I knew it was where I wanted William to be, although they had no openings for a special ed student at his grade level. I found out during that visit, though, that they did have a 3 year old program that I could attempt to get Freddy into, for the fall after he turned three. The odds were LONG. When I went to put him into the lottery, the staff at the assignment center basically said "You know he won't get in, right?" He had no kind of preference---he didn't live in the neighborhood, he didn't have a sibling there, he didn't have any special needs, and he was competing any other 2 year old in our zone that wanted a slot. I still can't believe the moment I opened the letter and saw he had somehow, by some miracle I still don't understand, gotten the slot, a slot that was good through 5th grade! He was there for 8 years! And 2 years after he first got in, we finally also got William in. And at the last possible moment, we found out we were expecting a little sibling for Freddy, just in time for her to get sibling preference for a 3 year old slot. Freddy and Janey overlapped at the school for just one year. It was soon after Janey started there that it became obvious she was regressing very badly, and she got the autism diagnosis December of that year. But unlike so many other kids that have disabilities, she didn't have to change schools. She stayed right there, where her brothers had gone. It means so much to me that she is having teachers they had, that people remember the boys, that I have been associated with the school for 13 years now. If anything in this long chain of events had gone differently, she wouldn't be at that school. The waiting list for a slot there in kindergarten, with no openings available, is currently 700 kids long.

And so, although some days I don't feel lucky in other ways, when it comes to schools, I certainly am. I'm lucky too that I am living in this time, when autism is better understood than in the past.

My wish, my dream, is that every child in America, or actually, every child in the world with autism can also be lucky, lucky to be surrounded by people that care about and love them, that are up to the huge challenges they can bring, that have the patience it takes to care for our special kids, and that they also get the time of respite from that all-consuming care that they need. Thank you, Jen and Christine, for giving me that time today!

Thursday, June 28, 2012

Summer School

I went with Janey and Freddy to the open house at her summer school today. I was quite nervous about going, just because of last year's open house, during which Janey completely freaked out. But this year went a lot more smoothly. The summer school is in a different location this year, much more suited for young kids. I found out that it's also going to be a program for autistic kids only at that location. This will be the first time Janey is in a class with all other autistic kids. I'm quite interested to see what that is like. The summer school is located at the center for autism education in the city, so the classroom is set up for autistic kids. Janey was a little upset going into the school, but nothing like last year. I think her ability to understand what I am saying has taken a huge leap. I said at one point that she might get to swim at summer school (which now I think she won't get to do) and today when I said we were going to see the school, she went and found her bathing suit and tried to put it on, and said "I want to go to the swimming pool". That was great. I talked and talked to her about how the school was going to be for summer only, and it was a different place than last year, and when the fall came she would go back to her regular school, and so on. I doubt she understood that much of what I said, but I don't know what she does and doesn't get, so I am going to start erring on the side of telling her more than she gets. We didn't get to meet her teacher today, but I'll meet her on Monday.

The summer so far has been a mixed bag. Janey has done some great things, lots of talking and understanding, but most days also feature a tantrum and crying fit or two or three, some of them pretty severe. But to use the phrase the boys hate me to use, that's life in the big city. I think Janey (and me) will be happy to settle into the summer school routine.

Sunday, June 24, 2012

Throwing the Penguin


Yesterday we drove out to central MA to take Freddy to a cast party that was being held there. I'd say it was one of our more successful road trips with Janey. Very little crying, and lots of talking. Road trips have always been something our family enjoys, but we haven't done many for the past 4 years, because it's so hard with Janey, but maybe that is changing. We brought her iPad, although she didn't use it much, we had the iPod for her music, although we didn't listen to it much and I had a big bag of random stuffed animals I got for $4 at the thrift store, and I handed her one when things were getting boring for her. We also kept her very well fed. She asked for a Happy Meal early on in the trip, and we've come to realize that if she's at all hungry, even if she doesn't know how to tell us, she falls apart. Once she had the meal, she cheered up.

Among the cool things during the drive---Janey threw one of the stuffed animals at Tony while he was driving, which of course was NOT cool, but what was cool was what she said as soon as she threw it "We DON'T throw the penguin at Daddy while he is driving, Janey!" Both a very long sentence for Janey and one of the first times she's let us know that she did understand that what she was doing was wrong, before we had a chance to call her on it.

She also just interacted more with her brothers than she usually does. Them all being crammed into the small back seat probably does this some. Freddy was having a Slim Jim, and Janey wanted some. He gave her a little bit, and she said "give me more bite, Freddy!" Also, she wanted some candy that he had, and said "Those are not your candies, Freddy!"

The picture is of her in a mall ride spaceship. She was really too big for it, but she loved it!

Overall, a cheerful day---something I love.

Friday, June 22, 2012

The Start of Summer

Here's a picture from the year-end awards ceremony at Janey's school. The kids all look a little grim, which they really weren't! But I picked this picture because it shows both of Janey's outstanding teachers, and also the aide that was with her most (Janey is in front of him) I had some tears at the year ending. Janey had such a wonderful year, and accomplished things I never expected her to. She got an award for best handwriting, for learning to write her beautiful "J"! I can honestly say that is one award I have never gotten, and would never get, unless it was some kind of "worse" award, instead of best, as I have the worst handwriting I've ever seen. That's why I type everything!

I always dread summer. I've been that way since I was Janey's age. I like the order of the school year, I don't like hot weather one little bit, I just don't like summer. With an autistic child, summer means long days without a break. Luckily, Janey will be going to summer school again, which is 5 hours a day, once it starts in a few weeks. It's at a new location this year, and of course I'm nervous, but not as nervous as last year. I know it will be okay---maybe not great, but okay. And I've learned my own limits. As long as Janey is pretty happy, I need to have the break it provides. But these few weeks are going to be a little long! So far, Janey has been pretty much happy, but still doing mischief constantly, and I am in what I think of sometimes as prison mode. I can't do anything but watch her. I can't get laundry done, I can't work, I can't even lower my head much to read. I need to be alert every second. If I take her out someplace, I need to hold her hand without a second's break. That doesn't lead to being able to shop, although we did a quick grocery run this morning. The carriage makes it easier, and it was early, so the place was empty.

I don't feel the panic I have at some points. I know I can get through this. I have started to forget what any other life would feel like, and this is my life, now. I delight in Janey a lot lately, even though it's as hard as it's ever been. I've gotten through all the other summers of my life, and I'll get through this one. But boy, do I love September.

Tuesday, June 19, 2012

The Club

As I was walking Janey into school for her last day of 1st grade, I saw a boy I've known since he was a baby, looking very handsome in a suit, getting ready for 5th grade graduation. Then I talked to a mother of twins about her summer plans. After I dropped off Janey, I saw the old principal of the school, and had a good talk with him about the boys. As I was walking to my car, I talked to a few other members of the school staff about their kids. What do all these people have in common? They are all members of the club---the club of those affected by serious disabilities. From the boy with Down Syndrome to the twin in a wheelchair to the principal who is blind, they all are members. And today, for one of the first times, I had a feeling of pride in also being in that club.

Of course, in a lot of ways, pride is a strange thing to feel. It's not a club anyone tries to join. The membership fees are incredibly high. The initiation rites can be life-threatening, heart-wrenching. The meetings don't occur often enough to keep members from feeling incredibly isolated at times. There are not a lot of facilities for us, not a lot of perks or parties or benefits.

But it's all about the members. The members I have met are some of the most remarkable people on this earth. They have struggled for everything they have, for their children or themselves. Contrary to what many would think, they are also funny, happy, cheerful people much of the time. In the popular text talk of today, they absolutely get that YOLO (you only live once). They don't feel sorry for each other or for themselves, for the most part. But they get it. They get each other's lives. They celebrate each other's triumphs, and cry each other's tears.

As I talked to the people I talked to today, I realized I didn't talk to any of them about disabilities. We had some laughs, talked about summer plans, said some goodbyes, caught up. I left the school feeling as I often do after being there---on a bit of a high. As I saw yesterday, not everyone in the world gets what our club members go through. There are many that aren't in the club that do, and in fact many of them, especially the teachers and others that work with our kids, are more than honorary members. But like all good clubs, we have our rivals---those who make fun of us and ours, belittle us, are annoyed by how we might change their routines or talk oddly and loudly or just plain remind them of something that for some reason they don't want to be reminded of. That's part of being an exclusive club, I guess.

I'm not going all "Welcome to Holland" here. If I could go back and refuse membership to the club, I would. But membership, once you are chosen, isn't optional. I'm a lifetime member, and there's nothing I can do about that but be proud to be in a club with some of the most amazing people in this world.

Monday, June 18, 2012

Not letting a jerk ruin a great day

I took Janey to the aquarium today. I would never have had the courage to do so without my friend Maryellen. Janey loves her (and so do I!) and with her help, we had a great day. Janey liked the aquarium a lot! I had a feeling if she would like any museum type place, that would be it, as she loves to look at fish, and has been very, very taken with a Teletubbies segment about feeding penguins. But I've guessed wrong many times in the past. Luckily, I was right this time. Janey loved seeing the penguins, and spent a long, long time at several fish tanks. She was good walking to and from the aquarium, and even good waiting an hour for our train at the station. I was on a high---so happy that I was able to do something that "normal" with her and have it go well.

Then the train ride home. Janey was still happy, but starting to cross over into manic a little. It had been a long day. She was repeating things she heard Maryellen and I say. She got caught up in saying "Don't say THAT!" and then laughing in a fake and loud way, over and over. We were working on calming her down, but she wasn't hugely loud, I didn't think. However, a man about 4 rows ahead of us (on a crowded train, which was in no way quiet otherwise), turned around and said "Could you just keep it quiet back there, please?" in an annoyed and superior way. Maryellen immediately said "She is autistic" and I said "We are doing the best we can". The man said no more, but for me, the damage was done. I wanted to cry my eyes out, and alternatively wanted to go scream at the guy, to let him know how his words had pierced me. I know I shouldn't have let it bother me. He was a jerk, he was somehow annoyed by Janey's tone or pitch or who knows what. He had no idea how hard it is for me to get up the gumption to take her out like that, and how easily someone like him can make it a thousand times harder.

Now we are home, and Janey has lost it---she is screaming, hysterical, out of her wits. I am letting her cry a little, as I think she needs it after holding it in all day. She was probably overstimulated, but I have to count the day as a success.

And I am lucky---lucky that I have rarely had someone be that openly nasty. I can't let my own demons keep me from giving Janey experiences like a trip to the city. I don't want to be the center of attention. I don't want to be seen in a negative light. But I'm not Janey, and she had no idea what happened. She hopefully will remember today as it should be remembered---a great day.

Friday, June 15, 2012

Reading my life

I just finished a book which came the closest to describing my life with Janey of any autism book I've read. It's a memoir called One of Us, A Family's Life With Autism by Mark Osteen. The boy in the book, Cameron, is autistic, on the lower end of the spectrum. He talks a little, learns a little but very slowly, has mood swings and does and doesn't do so many things like Janey. I cried a lot reading it. He is much more aggressive than Janey, which might be a male/female difference, but in other ways I felt like my own life was being described. I loved the book in that it was in no way about miracle cures, about causes and blame, about one school of thought over the other. It was just a straight story---what life is actually like with a child like Janey or Cameron in the house. The parents loved him more than anything, but many days were almost unbearable. In the end, Cameron goes to a residential school most of the year, and it works fairly well, although it's heartbreaking for the parents. The picture of Cameron I loved best was not one of the ones of him as an adorable little boy, but the one of him at 19, a handsome guy, looking like any other teen, but as I know from the book, still watching his Raffi videos and reciting Max and Ruby. Some people would probably not find this book hopeful, but I did, in that it gave me a vision of a future for Janey. The theme of the book, I felt, was gradual acceptance. They worked hard with Cam, and did all they could for him, and loved him greatly, but it didn't change who he was, and I loved it how much they missed him when their house was empty. It was encouraging too to hear how he did get easier as he got older, and by that I mean as he got to his late teens. A light at the end of the tunnel is still a light if it's far away.

This is the kind of book there needs to be more of, to make people aware of the huge needs that are going to exist in the future. We can all hope and be excited by advances in autism and early intervention, but the truth is, some kids, probably most kids with autism are going to stay autistic, and become adults with autism. They are going to need us, and by us I mean everyone, not just their families. This book hugely illustrates how impossible it is for parents to alone care for a child like Cameron.

It also made me appreciate Janey. Janey's talking, when it does occur, is pretty clear, and she talks a little more than Cameron did in the book. She isn't often aggressive (but in one of those not so fun co-incidences, Tony just got home from getting her at school, where it was reported she was hitting kids today) and for now, she is a little easier than Cam seemed to be in the book. We all compare, as the author mentioned, for better or worse, and as he also talked about, after reading about autistic kids on such a high end of the spectrum that they can almost pass for "normal" and can self-advocate and so on, it's sometimes good to realize that not every child with autism on earth is miles ahead of yours.

I want to thank Mark Osteen for having the courage to write this book, and encourage anyone with an interest in autism to read it.

Wednesday, June 13, 2012

Spilling on the floor

Last night was some good old times around the home. First, Janey got a container of yogurt, which she seemed to be eating nicely, until she had the sudden urge to pour it all onto the floor, slowly and deliberately. I was across the room, and couldn't get there in time to prevent a huge yogurt mess all over. We did the whole routine---make her help clean up, time out, firm tone, etc. Then she was having some oyster crackers, and again, not 10 minutes later, the whole bunch of them, thrown on the floor, again, me right there but too late to prevent it.

So what gives? All the advice I've read about autism behavior management starts with figuring out what the antecedent is. What caused the behavior to happen? I was searching my brain for that. I think what causes the behavior is a thought in Janey's mind that it would be cool to see whatever substance she is holding fall onto the floor. I think it's that simple. Sometimes it's anger, but last night, it was just plain wanting to dump things on the floor, because it's interesting to her. So how do I use that? Not let her eat? Not let her have access to anything in the house that could be spilled? Neither are possible.

And how do I discourage the behavior? Nothing works. It seems to be that almost all ways to control behavior are based on two things---wanting to please the adult and understanding cause and effect. Janey doesn't care about pleasing adults. And she doesn't seem to get cause and effect, at least beyond one level. She understands that pouring something on the floor looks interesting---that's cause and effect. But the next level is more complicated---pouring something on the floor looks interesting, but THEN Mama or Daddy makes me help clean it, puts me in time out, talks to me in an angry firm voice. That's thinking that either she doesn't get, or if she does, that she has decided is not a deterrent---the fun of the spilling is greater than the not fun afterward.

So what do I do? We already try to keep everything out of reach, but in a small house with 2 other kids, it's not possible to totally lock everything away. The fridge is bungie-corded shut, but Janey can open that now. Foods like crackers are in bins that snap shut, but she's more skilled at opening them now than the rest of us. And she does have to eat. The one thing we sometimes resort to is feeding her a bite at a time, so she doesn't have food in hand to spill. But she is closing in on being eight, and is very capable of eating on her own. Feeding her like a baby is not a long term solution. But absolutely any food or drink she can hold is subject to being tossed on the floor.

I'm at the end of ideas here. Last night just felt completely depressing. I had no idea what to do. Janey barely slept last night, and today I feel highly discouraged. I spent time when I wasn't sleeping trying my best to find some advice on-line, and I didn't. Over and over, I was told by the writing of "experts" to find that antecedent, to figure out why. I don't think that will help. Am I supposed to somehow block the part of Janey's brain that has the desire to spill? Believe me, I've filled the house with sensory toys. I've put in orders beyond what I can afford for toys that supposedly will fill her need to use household items for whatever she is craving. And they don't work. Other experts say to do what we have been doing for years. Be firm, make her help clean up, put her in time out. Great. I do that. Except for the 7 minutes she's literally made to sit in time out (by means of about 20 redirects back to the time out spot), that doesn't prevent anything. She gets back up and does it again.

I think there is a lack of true understanding of autistic kids by the experts that give advice. I don't think they totally get a child that is not motivated by pleasing adults or anyone else. I don't think they understand the combination of autism and retardation. As I have felt so often, I feel like I'm writing my own rules here, with the help of the few people that do understand, such as her teachers and therapists and other parents of children like Janey. And it feels lonely.

Tuesday, June 12, 2012

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.

Sunday, June 10, 2012

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.

Friday, June 8, 2012

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.

Wednesday, June 6, 2012

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.

Tuesday, June 5, 2012

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!

Sunday, June 3, 2012

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.

Friday, June 1, 2012

"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!