Saturday, March 31, 2012

The Mall


Freddy and I took Janey to the mall today. I don't go to malls much at all, and especially not with Janey, but Tony needed to do work around the house and it was raw and rainy, and I couldn't think of another place to go to get out of the house for a while. Janey didn't care for the mall---big surprise. She didn't do that badly at first, although I didn't attempt to actually shop or go into any stores, but she didn't mind walking around, and she was quite happy to take some escalators---she loves them. I went into the Target at the mall and let her look at the toys, but she mainly just knocked them to the ground and tried to escape. Luckily, Freddy is quick and caught her. And soon after that, she'd had enough, and started screaming. I could almost relate. I feel overstimulated at malls too. But we had promised Tony to try to stay out of the house for a while longer. We tried going to Five Guys and getting a burger, as Janey likes their fries, but she was not up to the line and did one of her latest tricks---taking off her shoes and tossing them a bit. I gave Freddy money to get the food and took her to the car, and we ate there. That went fairly well, until she decided to spill soda all over. We headed home after that, although Tony wasn't done, but I was out of ideas.

Of course, it all made me think. There is little I can with Janey. We can't eat at restaurants, we can't shop (except a quick grocery shop, which she usually tolerates), we can't go to other people's houses usually, Janey doesn't have playdates or lessons, she yanks books and is loud in libraries, if she isn't crying----there are so few options. I could not even have done the brief mall walk without a wingman in Freddy---she'd have been lost in the Target, most likely. When the weather is better, we can sometimes go outside places, but I have to hold Janey's hand at all times unless we are in an extremely secure place. Autism itself is isolating, but the lack of ability to do normal everyday things with autistic kids creates even more isolation for them. I am so thankful for school and after school, and summer school. But I wish Janey's world didn't have to be so small.

Thursday, March 29, 2012

1 in 88???

The big news today of course is that the CDC says autism is being diagnosed even more often than before. (here's the article) I have two reactions, both based of course as anything I say here on my own personal thoughts and feelings.

First, I don't think the rate of autism is truly rising as fast as they say. I think the rate of autism being DIAGNOSED certainly is, but there's a difference. My evidence here is my own children. As I've talked about before here, my older son was originally diagnosed as autistic, later, at age 4, changed to Aspergers. As the years went by, the diagnosis seemed less apt to me. At around age 8, he was in a couple studies, and testing during both showed he didn't at that time meet the criteria for Aspergers. Of course, autism spectrum disorders are supposed to be for life, except in rare cases. Those cases are the kinds books and movies are made about, where incredibly dedicated parents (or Jenny McCarthy) do everything in their power to "cure" their child. That wasn't me. I'm dedicated, but not that focused. William got good quality inclusive special education help and therapy at school, no ABA, no diets, no miracle cures. He just, in my eyes, didn't actually have Aspergers. He was a preemie, he had a strong and unusual personality, but he wasn't on the autistic spectrum. Today, William is 17, the top student in his class, a pretty decent guitar player and a very, very cool person. He's quirky, but we're all quirky. He has not had any special services at school since 5th grade. None. But the state still considers, if they have statistics some place, that he is autistic. We still get mailings from the Department of Retardation for him, which I hide and which I have tried and tried to call and have stopped. He's looking at some Ivy League schools---a stretch, but not an incredibly big one. I don't think he needs those services. But yes, he'd be counted as one of the 1 in 88.

And then there's Janey. I don't need to tell her whole story. But she's one of the one in 88, and rightfully so. Knowing the two of them fairly well, as I can say I do---it's a huge world of difference. About as huge as I can imagine. Aspergers, however, even for people that really do have Aspergers, is grouped right along with autism. Kids like the son of a close friend, who is probably the single brightest person I've ever known, are grouped with Janey. This paints a very confusing picture for the general public. Is autism someone like Janey, or is it something else entirely? If you can only get services to help your high functioning kids, kids that might very much indeed need help, by calling them autistic, would you? I guess I did, once. I didn't call him that, but I didn't know any better, and I accepted him being called that, something that now that he's old enough to understand, upsets him a great deal when he thinks of it, although I wish it didn't.

So that's my first thought. My other thought---if this is true, if somehow the rate of autism keeps going up and up and up, what are we going to do about it? It's a horrible emergency, if it's true. If one in 88 kids is going to need help in life like Janey is going to keep, then there's going to be a HUGE cost. A monetary cost, but also a huge cost to families. I know how having a child with autism affects a family. I love Janey with all my heart, more than I can possibly say. But she is tough. Very, very tough. And I have a supportive husband, great older kids, a wonderful school system with fantastic teachers and therapists---I have all that. If I didn't, I don't know how I'd do it at all. And if there are really that many kids out there with autism---well, the nation is in for a shock.

I worry about the short attention span of causes. If autism is rare and something fascinating and interesting, celebrities and all will jump on the bandwagon and help. But if autism is common and wearing and no longer a novelty, I can picture a backlash. This is the case whether these kids have Janey-type autism or Asperger type autism. I can see public skepticism, public boredom. It's how the country works. For a while, everyone thought about Haiti all the time, or Japan after the earthquake, or New Orleans, or so on. Then, gradually, they fall out of the news. and although there are still dedicated people working for those causes, people's minds can only seem to hold so much caring at a time. I worry about that. Because all these autistic kids aren't going any place.

And so I'll do what seem to always do---think extremely locally. So locally that the local place is my own house, my own family. I will be there for my own little 1 in 88.

Tuesday, March 27, 2012

Social skills lessons with the cats

I hit on something fun the other day with the cats and Janey. Generally, Janey acts like the cats don't exist. It's kind of like I picture the regular world and the magical Harry Potter world interacting. They share the same space, but they just don't usually see each other. The cats can get right on Janey's lap, and she acts like it's not happening. And if you know cats, you know that they are not very hurt by this, and in fact like her a lot for her indifference. But sometimes I wish she liked them. One of them, Gusta (short for Augusta, which was actually one of the names we were thinking of for Janey) was sitting around recently looking at Janey. I said to Gusta "Say Hi to Janey, Gusta! HI!, Gusta! What do you say to Janey? HI, GUSTA!" It's the kind of thing we say to Janey, to try to get her to say hi. Of course, Gusta wasn't buying, but Janey actually got it and laughed and laughed. Then she started saying it too "Hi, Gusta! HI! Say HI, Gusta" and added on "Look at me and say hi!" Since then, she wants to play the game over and over. I think it appeals to her that the cats are far worse at it than her. I'm not sure she gets that the cats are in fact SO bad at it that no amount of coaching will EVER make them say hi, but that doesn't matter. It takes the focus off her while giving her some practice, and the cats do interesting things that stuffed animals in that role wouldn't do, like sometimes jump down and go away while I call after them "Gusta! That wasn't very polite! You could have at least given Janey a High Five!" which got her laughing again. It's probably good for me too, as I struggle not to ever say things like that to Janey, but the rules are different for cats, who are not being affected in terms of their feelings or their long-term development, which, to make a run-on sentence, is one of the reasons I love cats. And we need silly, fun times with Janey. Lately she is really wearing me out. She's still "testing limits", which is the polite term for being extra naughty. I think it's a step forward in the very long view, but it added to often not getting good sleep and just the general life with a disabled child is enough to send me into long naps during my precious daytime alone time. So I have to grab fun with her when I can. And hey, maybe one day the cats WILL say hi back. Or at least master the high five.

Saturday, March 24, 2012

Dennis the Menace was a slacker

I'm compelled to write about Janey's afternoon yesterday, partly just because I dearly hope someday I'll be able to look back on it and laugh, and find it hard to believe it even happened. Now is too soon. About fifty years too soon, I think.

As I picked Janey up from school yesterday, I got a report on her day from her special ed teacher. I love hearing these reports, as her teacher is so wonderful and also has a great sense of humor. It's great hearing about Janey's day, even when, as it was yesterday, it's a mixed report. Janey didn't feel like sharing the iPad, and slapped her friend she was supposed to be sharing with. She didn't feel like concentrating on her work, and had to stay in for part of recess, which made her very, very angry. I could just picture her, and we both were feeling happy that Janey understood what was happening and reacted with the reaction a lot of first graders would have. She also did a lot of good talking, and said a complete long sentence about wanting to make a ladybug in speech therapy.

On the way home, I talked to her about her day, as I try to do every day, although it's a one sided conversation. I went over how we don't slap people, how I was glad she was talking a lot, all that. In the rear view mirror I could see Janey looked a bit surprised I knew about the less great parts of her day---another age appropriate reaction I remember well from the boys!

Then...we got home. And started what can only be called the HOUR FROM HELL.

First, I tried to have us play outside a bit before going in. The weather has been great lately. Usually, Janey loves to be outside, but for some reason, she wanted to go in. I insisted we stay outside for a few minutes. As I was admiring my daffodills, with Janey feet away, she decided to take off her clothes and play in dirt. Well played, Janey---she figured out that would get her inside fast. So we went in, and I started a bath for her. She entertained herself while the water was running by slamming down the toilet seat repeatedly. I got her into the bath, and she quick as a wink grabbed some shampoo and poured it almost all into the water, to make bubbles. I moved all the shampoo and conditioner out of reach, and got the bath done.

Then, I thought we'd play a little iPad, and practice sharing. But Janey thought instead she'd grab a bottle of soda and practice pouring into a small glass. As I rushed over, the glass overflowed and Janey delightedly poured soda all over the floor. A huge sticky mess ensured. I put her in time out (which I doubted does a bit of good, but she'll usually stay there and it gives me time to clean up). Luckily she didn't get much on herself, so I decided against a second bath for the moment.

Then---the fateful phone call. As she was in time out, I looked for the phone (anyone who calls us knows we can never find the phones, a result of having to always be where Janey is, and walking around the house while we talk). I blame myself, really, for thinking I deserved the luxury of talking to whoever might be calling. At that point I would have chatted with a bill collector for some adult conversation. I yelled over to Freddy to keep an eye on Janey, and he said he would. We both must have let down our guard for a minute, thinking she was still sitting in time out. But she wasn't. When Freddy got up to check on her, literally just a minute later, I heard a scream from him "JANEY! JANEY! I CAN'T BELIEVE THIS!" I ran to the kitchen, where she was, and where she had decided to open a new jar of peanut butter, which I had left in her reach thinking she couldn't get it open (I barely can open jars lately), or open the inner seal, both of which she had done, and then had quickly grabbed a handful or two of the stuff, completely covered her chest and face and hair with it, and was getting started on spreading it over the kitchen. At that fateful moment, Tony walked in, coming home from work, to a scene I'm sure is burnt in his mind. At first, he thought an even more upsetting "diaper incident" had occured. I can see why. I led Janey to the bathtub, trying my darnest to keep her from touching anything. I gave her a second bath. And learned something new---you can't wash off peanut butter very easily. It takes scrubbing. It doesn't come out of hair until you've shampooed it about three times. It was a long bath, made longer by tears, not Janey's (she who can cry for an afternoon over nothing was not shedding a single tear) but mine. Tony and Freddy worked on cleaning the kitchen.

And that, my friends, was an hour in my life.

I'm trying to analyze it. Why? I can't think this was all just impulse, although I might be wrong. I think Janey was acting out, at least to some extent. She was probably annoyed I talked to her about school, annoyed to be home (she loves school) and also had had a bit of a thinking breakthrough---I can be naughty on purpose. It makes all kinds of wild things happen.

I have no idea where to go from here. Except little things---never assume she can't open soda or peanut butter. Although we literally try to ALWAYS have someone watching her (not just casually, but literally with their eyes on her), she's getting quicker, and we don't have that nice 30 second window any more.

How is this going to be possible? Should we stop sleeping, as there's always that possibility she will wake up when we are asleep? What the hell are we going to do? Where do we go from here?

Thursday, March 22, 2012

Janey's school

Here's a link to a PBS Newshour segment about Janey's school...

I'm hoping the link works this time---I'm having a huge amount of trouble figuring out how to make text into a link!

Okay---I tested it and it finally seems to work!!! After only about an hour of fooling around trying to figure out how to do it...

I loved this segment. Janey doesn't appear in it, but so many other kids and teachers I care a lot about do. It was making me reflect, as I often do, how incredibly lucky we are that Janey goes to the Henderson School. It was also making me feel sad for all the many, many, many kids like Janey that doesn't get a great education. It's not fair. Every school in the world should be a good school. As the segment mentions, inclusion doesn't cost more than non-inclusion. And it's not even just inclusion that's the issue. I know there are great classrooms for kids with autism out there that are not inclusion classrooms, but as is the case with inclusion classrooms, not enough of them.

But just personally, we are so lucky. Janey didn't have a diagnosis when she started at the Henderson. She was just a sibling of Freddy. When she was diagnosed, we didn't have to move her, we didn't have to fight for services, we didn't have to send her to a school we weren't familiar with. We were able to keep her right where she was, with teachers and staff I'd known for 8 years at that point. She is getting the best education she possibly could, and is cared for and loved and appreciated. I will never, never take that for granted.

Tuesday, March 20, 2012

"I'm in a bad mood"


Janey has not been happy this week. She's been crying a lot in the evenings and over the weekend, and been fussy at school the last few days too. This morning felt very long, with off and on tears. I kept saying "What's wrong?" or trying to model a sentence for her "I am sad because I want......" or "I am angry because....". Sometimes she will fill those in, but it usually doesn't help much when she does. It occurred to me today that I rarely know exactly why I'm in a bad mood when I am. If someone gave me a sentence like that to fill in, it would be rare I could think exactly how to fill it. Usually it's a combination of things, or something I have no idea about. So I started saying to Janey "You can say 'I am in a bad mood' when you are upset". I said it over and over and over, as I often do when I want her to learn something, and by the end of the ride to school, she was saying it too "I'm in a bad mood! I'm in a bad mood!" and the crying seemed a bit less. With the special kind of mindreading good teachers have, her regular ed teacher said to her as she approached the room obviously not happy "are you in a bad mood today?" I said that she was. I'm going to try to try that for a while---not trying to figure out what's bothering her, but just giving her a name to use for her moods.

The picture shows something Janey does a lot---she pulls on the corner of her eye. I think a lot of kids with autism do similar things. I would guess it makes things look a little different, and just gets to be a habit---I'm really not sure. I've tried to catch it in a picture for a while.

So, a tiring week, for Janey and for us. It's a little hard not to get discouraged during weeks like this, but I'm going to try not to.

Sunday, March 18, 2012

A book that set me thinking

I just finished reading a book called "Reasonable People" by Ralph James Savarese. It's a memoir about his adopted son DJ, who is autistic and also went through much trauma in his early years before he was adopted at age 6. As often happens when I read a book about autism, it set me thinking. Their son learned to communicate using Facilitated Communication, which I had thought was pretty much totally debunked. It's when a parent or someone else holds a child's hand (or later on their arm or shoulder or so on) to help them control their movements, and the child types. I am quite convinced from all I read here that DJ was doing the typing, and that he was very bright. He didn't start FC until he'd had a very lot of reading taught to him, unlike some cases I've read where kids started doing it out of the blue, which makes it seem like it's someone else doing the typing. Some autistic people learn in time to type on their own. I still have a lot of skepticism about anything I read about autistic children or adults somehow being "unlocked" after having had so many thoughts over the years they have no way to convey. Maybe that's because it's too heartbreaking for me to think of. Is Janey understanding all we say, but can't let us know? I know that sometimes with the iPad, if I lightly hold her hand, she is able to do things she couldn't otherwise. I am quite sure I am not directing her hand. Her teacher told me she can write a "J" this way, and I've seen her do similar things. I just don't know.

The book also made me feel like a slacker, as so many books about autism do. The parents were endlessly devoted to DJ, who was very tough at times. The author was an "overthinker", as a friend and I call ourselves when we think about everything way beyond what most people do, and the author did address the fact that they had resources, money and time beyond what average people do. But still, they were far more hard working at getting DJ up to speed than I feel I am. I think part of it is I don't know what will work with Janey. If someone knew exactly what would help her most, I'd do it day and night. I really would. But I don't know, and I'm not totally convinced that anything would greatly speed up her progress. If I went with my gut, I'd feel that the most important thing for her is to be accepted by us, her parents. She is going to deal her whole life with a big world that will see her as odd at times, as unworthy of respect perhaps. I want her to have a happy childhood. I want her to have time to explore outside, to listen to music, to be silly. But I don't want her to be unhappy, and she is, too much of the time. Is this because she wants to communicate more than she can, and I'm not working hard enough to give her the tools? When I read about how other people approached autism, they always seem so confident they are on the right track. I am not like that.

Anyway, it was a very well written and thoughtful book, and I would recommend it. Any book that makes me think as much as it did is doing the job a book should do.

Saturday, March 17, 2012

A Bit Tougher


We've had some tough days lately. Janey mostly holds it together at school, but has been falling apart in the evenings, and today, all day. It often starts when she wants something she can't have unlimited amounts of, or that we don't have around. One night, she wanted Funions, and we were plum out, and she didn't take it well. She loves having her teeth brushed, but we have to limited the toothpaste (even though we get fluride-free for her "fun" brushing, but we can't afford to use up a tube a day) and she gets furious. She can't have everything she wants, and of course even if she did get everything she wanted, there would be something else she'd think of to want. But what is different is her reactions. I certainly never gave the boys everything they wanted, and they learned that life is like that. But when Janey gets upset, if it's the wrong week or the wrong mood, she doesn't recover. For hours. We go through hours of her screaming, hysterical. Usually now it's not literally hours, but often up to an hour, and sometimes more. When she's in a good mood, it seems like we are making progress, but when she's not, I don't see any evidence she'll ever learn from not getting what she wants. Which is a very, very frustrating and depressing thing to think of. I try not to project too badly into the future, but I do. I'm picturing Janey as a woman, and us increasingly old and frail, and her wanting Funions, and all kinds of scenerios where that doesn't end up well. And I can tell myself that it won't be like that, but at low moments, I wonder. If you haven't, I recommend reading Karl Taro Greenfeld's book "Boy Alone". Noah was the boy featured in a series of books written by his father, Josh Greenfeld. I read them long before I had Janey. Noah Greenfeld is autistic. His parents did everything, EVERYTHING to try to help him. And nothing really worked. His life today, as a man just my age, is a very sad life to read about. His parents had money, resources, some degree of fame and an endless amount of caring. Noah even got lots of ABA, long before that was common. But nothing really did anything. I don't think that will be Janey, but in my dark days, I think about it. We all want to feel hopeful and bright and think that the future is limitless. But that's not necessarily the truth. I need to stop thinking like that. The picture is from a walk I took with Janey early this morning, after she woke way too early and the other members of the family needed to get some things done that were impossible with her around. I loved walking with her in a deserted part, just letting her do what she wanted. I need to create moments like that for her. I need to stay hopeful.

Tuesday, March 13, 2012

The Buck Stops Here

Not a long post here, as my thoughts aren't organized in a blog-worthy way. Tonight I've just been thinking a lot about the essential loneliness of having a child like Janey. I am so much luckier than most, with a supportive husband and sons, a wonderful school, good friends and all. But when it comes right down to it, Janey is my responsibility. Mine and Tony's, but somehow, a mother is the most responsible. I can complain to others, get support from others, get help from others, but when Janey is screaming and I don't know what's wrong, or when I am overwhelmed by the inability to do any housework or cooking or reading or anything without Janey doing something messy or dangerous, it's me who it all reflects on. The house is a mess, I don't work as much as I should, I don't keep up with friends the way I should, I don't go to school meetings or community events or funerals or volunteer opportunities or anything like that as I feel I should. I know what I can do and not do, but it is very hard to explain this to others without it seeming like complaining or using Janey as an excuse. I am worn down. At times I want so much to just pour everything out to people, and I hold back from doing so, because it's not their burden. I am becoming more inwardly facing. I truly feel very alone sometimes, and I know I'm not, but in a way, when Janey has been crying for a long time, and the housework has built up and I have a drawer full of bills, I am alone. It's no-one else's problem but my own. That's the case with any mother, I guess, and it's my job, but tonight, it feels tough.

Thursday, March 8, 2012

Two Pictures



These two pictures show two sides of Janey, two very different sides that co-exist every day. One is her sitting on a bench at school waiting for "Mr. Ken", her ABA therapist. She likes him very much, as she does almost everyone at school, and she likes the mornings when we get there a little early and we can peek into the before-school program and watch the kids play as we wait for him. The other picture shows her before school this morning, as I was trying to get her going to get in the car. It's her serious face, the stoic look. When she is happy, it shows all over. When she's sad (and someday I should take a picture of her crying, but it just seems mean to be taking pictures at a time like that), she is very, very sad. But often, instead of being a little happy or a little sad, she is inward looking, stoic, hard to read. When she looks as she does in that picture, she doesn't talk often. She talks more at the emotional extremes. I don't know if that's her processing time---the time she uses to figure out the other times. I wonder if that's a state I should try to make there be less of, as I do with the crying, but I do think she needs it. I wish she had more times when she is alert and talking but not over the top excited or happy, but I don't know quite how to evoke that. For now, I'm just trying to figure it all out.

Tuesday, March 6, 2012

Screaming again

Tonight Janey had a good old fashioned screaming spell. It's been a while since she had one that bad, and I can't say I've missed it. We have no idea what set it off. It might have been anything. We were having a normal night, and she was having a few moments of fussiness and tears, which happen a lot of nights, but suddenly it turned into a full fledged screaming frenzy. It felt like it lasted for years, but it was probably only an hour or so, but far along enough. It's one of the most helpless feelings on earth when she gets like that and there's not a thing I can do, or Tony can do. We went through out mental checklists---food, water, quiet, offering a bath, everything we could think of. I held her and talked about feelings, I told her I'd be quiet and she could tell me if she decided what was wrong or what she wanted, we just lasted out the storm. When I hadn't said anything for a few minutes, she turned to me frantically said said "Why are you crying? Why are you crying?" as if she wanted me to say that, so I did, but of course, there was no answer. Finally, she screamed out she wanted soda. Tony walked to the corner store to get soda, and some Doritos. If anyone is thinking "Jeez, these people are not too big on nutrition", rest assured she usually eats quite healthily, but at that point, we would have given her anything legal she asked for. When he got back, she, still screaming, took some swigs of soda, and now is happy as a clam for the moment having Doritos. So---any lessons learned? No. We still don't know what set her off, we still don't really know what made her stop crying. We probably get overly upset by the crying, because unlike with most kids, we have the memories of the times that the crying didn't stop for weeks. I still wonder some times how we ever lived through that, Janey or any of us.

Hopefully, these spells will become less and less frequent as times goes by. I imagine there might always be some. When you can't really explain what you are feeling, sometimes it's all going to get to be too much, and I think we are all going to have to just be prepared to weather some storms for years to come.

Monday, March 5, 2012

Stoic Look



I've been taking a lot of pictures of Janey lately, and many of them come out with her having "the autistic look". It's a look I think most parents of autistic kids recognize instantly. It's what sometimes allows us to identify other autistic kids we don't know, in stores or libraries or parks, at times I think even before the parents know the child is autistic. It's what I used to think of as a blank look, or a inwardly looking look---a look that doesn't quite connect to the outside world. Today, when I was looking at pictures of Janey, I had another thought about the look. I think it's a stoic look. It's a look that says "I don't really get what is going on here. I don't know what crazy thing is going to be thrown at me next. So I'm going to be stoic. I'm going to just reserve judgement and emotion for a while. I'm going to not commit to any reaction. I need a little time to decide how I feel about this" It's a look I think Janey and other kids put on because they aren't quite in total synch with the rest of us. It's not that they are slow, or unaware---they just don't quite operate on the same plane. So they keep a neutral look. It makes a lot of sense, really. It's what I think I do when I'm overwhelmed, except I add in a little smile, or a "I'm busy thinking about something, but it's not that I'm being unfriendly" touch. I know how to do that. Janey doesn't, or doesn't care to. So she goes into stoic mode. The picture here isn't the best example, but it's the one I took that gave me this idea, for some reason, so I'm putting it here. I've got to think more about this one.

Thursday, March 1, 2012

The Future

My husband turns 50 tomorrow, and next month we will have been married 20 years. It's making me think about the future. At this point in life, a lot of couples might be getting ready for the next phase of life---an empty nest, thinking ahead to someday retiring. Of all the things that having child with significant special needs changes, I think perhaps the most profound is the view of the future. There is no future I can picture without a child in it. Janey won't be a child physically or chronologically, but it's very likely she will be a child mentally forever, and we will be responsible for her as we would be for a child.

I was daydreaming the other day about when Tony retires, how we could take long trips around the country, and I was a little startled to realize Janey was in those daydreams as a natural part, and it wasn't a negative part. I pictured her joy at trying hotel pools, or listening to music in the car, or seeing new places. I edited out her screaming for hours, or making it so Tony and I were never alone, or that kind of thing, but daydreams are always edited a bit. I was happy that my mind could glimpse a good future with Janey in it.

But of course, that's not always the case. I think about things like group homes. I am sure there are wonderful group homes, but I am terrified at the thought. I am scared to death of Janey being abused, or yelled at, or not taken care of well. I've heard that every parents needs to let go at a point, but I can't see letting go of her. I can see it with the boys, because they can take care of themselves, and let us know if something's wrong, but I can't see it with Janey. I try to tell myself---I never worry about those scary things when she's at school. Truly, never. That's a matter of trust and love---I trust the school, and I know the people there love Janey. Maybe I would find a group home like that. But I know how lucky, how lottery-winning lucky, I am that she's in the school she is. I don't know if I'd get that lucky again.

And so, for now, my future will always have Janey at home. And that is usually something I can picture without panic. When you have children, there are no guarantees. No-one ever says "Take good care of them for 18 years, and then you'll get a break". You are playing the lottery with kids just like with so much else. And for the most part, we've been very lucky. There are so many things worse, unspeakably worse, than having a child who will probably never leave home. And heck---she's only 7. I can put the whole thing out of my head for a lot longer, which is something I've gotten fairly good at. So for now, we'll just celebrate the milestones as they hit.