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.

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.

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.

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.

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.

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.

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.