Moments from life with Janey

Playing in the back yard this evening, Janey started singing something that sounded like "Take Me Out To The Ballgame". I'm not sure that was it, but I started singing it, and she loved it, and every time I finished singing, she said "Take Me Out!" wanting it sung again. I'm no singer, but I felt appreciated. We did that routine about 10 times, and then I told her we'd go in and find it for her list---her playlist on Tony's iPod. We keep it on the base all the time, and she knows how to play it herself, and listen to the songs she likes. I found two versions I liked. One was Jimmy Buffett singing at Fenway, and replacing "home team" with "Red Sox" and the other was Carly Simon, from the Ken Burns documentary. I played her the Jimmy Buffett one first. Huge mistake. It had a lot of organ music and background cheering, and she was extremely upset. I quickly switched to Carly Simon, and she was much happier. It made me see that a common theme in all songs she likes are very clear lyrics. I love figuring out her tastes, and I love her love of music. We have developed a routine---on the way to school, we play my music, and if she likes something, she repeats a line from it, and I play it again. There isn't something she likes every day, but we've added quite a few songs that way, and it's one of the few times I feel like she's able to truly show me her tastes and preferences. We don't always agree (this weekend featured "Girls Just Want to Have Fun" in heavy replay) but that too is great!

Sad to Happy

Janey brought me my camera this morning and said "Cheese!", wanting me to take her picture. I was in the middle of something that moment and couldn't do it right away, and she immediately fell apart. I hurried what I was doing and took some pictures, and captured her transitioning from crying to happy, and thought I'd show how that transition looks. Now she is back to crying, due to Tony's lack of being able to use supersonic speed in getting her some "sauce" for breakfast (spaghetti sauce in a bowl) I think it might be a long day.

Re-entry

Tony and I got away overnight for our anniversary, thanks to my parents, which was wonderful, wonderful, wonderful. It seemed like much longer than a day and night. The hard part, though, is coming home. It's getting harder each time I am away for a day, which isn't too often, but does happen occasionally (thanks, Julie!) I guess coming back gives me a perspective on Janey, and sometimes that is hard. She has been in a great mood this week, and was very good for my parents, so it wasn't a behavior issue. It was more my own issue. I think I have a dream of her being very excited to see me after the day away, or at least seeming to notice I'm gone or ask for me. I know that she does notice, I know she's happy to have me back, but sometimes, I dream of that big hug, or at least her asking where I am, which isn't something she would really know how to ask. When I saw her first yesterday, she barely looked at me. And as I said, it's my issue, not hers. It's what I wanted, not what she needed to do.

It made me think about more aspects of her autism and delays that are hard for me, and not perhaps for her. As we waited for the lunch place yesterday to open, I couldn't resist stopping into the American Girl Doll store. There's a real fantasy---even if Janey had the slightest desire for such a doll, I couldn't afford to get into that world. But it's one of those mother things. I would love her to WANT one. And it makes me wonder if in some ways I am like those mothers I like to laugh at and be disgusted by when I can't help myself and watch my guilty pleasure show, "Toddlers and Tiaras" There are parts of being a mother that are just for the mother, not the kids. Janey doesn't know that American Girl Dolls exist. She doesn't know that I would like her to be excited to see me. She doesn't know I had dreams of introducing my little girl to books I loved and reading along through the series of Little House or Narnia or Oz books with her. She doesn't know how I thought about going into toy stores with her and discussing which new Calico Critter we would be able to get, or even how I daydreamed about arguments we would have over clothes. Those are my regrets, not hers.

And of course I know---even if Janey were not autistic, she'd be her own person and might have absolutely no interest in any of those things. I don't need to be reminded of that, even though it's only myself reminding me. Or maybe I do. I need to be reminded that when Janey is happy, I need to be happy along with her, even if what makes her happy is not my dreams for her. She is happy asking for oatmeal, watching the Care Bears, listening to "Keep on the Sunny Side" for the four-hundredth time. I'm glad she has her own things that make her happy. We all need to have those, and I need to remember that.

Twenty Years

Baring any last minute divorce action, Tony and I will have been married 20 years on Thursday. Those have been good years----years with ups and down, with some serious health crises, with some losses of family and friends, but with more happiness and laughter and good times than bad.

The picture shows us just before we got married. I'd include an "after" picture, but I don't want to scare any people thinking of marriage off with how it aged me! Tony, however, looks oddly the same!

Autism certainly impacts our marriage. It can't help but do so. When you are under constant stress, when you never have a minute free of worry or supervision, when your time together is limited in the extreme---it affects you. At times, it's caused us to bicker over things so little that it would seem crazy looking back. It's caused us to feel like strangers living in the same house when we have done nothing but care for Janey for days. It's caused us to be exhausted, and not give each other our best. But overall, I would say it has made our marriage stronger. Part of that is just that both of us know it would be impossible without the other. Taking care of all our children has been a partnership, I think more so than with many husbands and wives. We need each other badly. Also, the few moments we get alone, we treasure. We don't take our time together for granted!

As with most people that get married, we took a leap of faith. I often think how lucky I got with Tony. Without us ever sitting down and figuring it all out, we have nearly identical philosophies on so many issues. Although most marriage advice writing would tell you otherwise, our children come before our marriage, and I think that has saved our marriage. We have a common goal---raising our kids as best we can. I think we both also are people that didn't go into marriage with a lot of expectations and visions. We didn't even picture the picket house in the suburbs, a perfect little boy and girl, youth sports and Disney trips and the best schools and all that. We didn't look a lot past just wanting to be together and have children. So when things got crazy, as they often seemed to, we didn't feel betrayed. We also share a strange ability to put aside the crazy times when we can. I can't think of how many days have been pure awful which we have ended with take-out Chinese, a funny TV show and a few enjoyable shared moments, and managed to end the day with a smile.

This all sounds pretty sappy and self-satisfied, reading it back, and I don't mean it to sound that way. It's been hard. But it's been a shared hard. I look forward (mostly) to the next 20 years!

Doctor's Visit---a very tough day

Yesterday all three kids had their annual physical. We took the train into the city, where their pediatrician is. I'll have to say it was one of the toughest days I've had in a while.

Part of it was the talk I had with the pediatrician about Janey. I can't write about all of it right now---not to be evasive, but it's just too hard. It was about the future, near and far, and choices we'll have to make. It was a good talk, and I am so lucky to have a pediatrician who understands me and who I feel I have a mutually respectful relationship with. It means a lot to me.

Much of what made the day hard was just how tough Janey was. It made me realize how little I attempt to do with her lately. We used to go into the city a lot more, but I felt like a tourist yesterday. Even though we technically live within city limits, I felt in awe actually being downtown. For a few brief seconds when Janey was okay, I was thinking how I should go into the city more with the kids. But then Janey started freaking out. And continued, off and on, the whole time. She'd be okay for a while, but then just start screaming and struggling and trying to run away. During the examination, it took all my strength and the doctor's strength just to be able to look in her ears and mouth. She yelled, tried to bit, furiously lashed out. After the visit, I took the kids for burritos. It was one of those things I shouldn't have tried to do, but once in a long while, I just want to do a normal family thing. Midway through eating, Janey lost it, went hysterical, tried to run out. The place was packed, and I am not being paranoid when I say everyone in there was staring at us. It's hardest for the boys. No boy that age want to be the center of negative attention.

When we finally got home, of course I couldn't relax. Within literally one minute of walking in the door, Janey found a bottle of soda and poured it on my computer keyboard. She spent the rest of the afternoon and evening periodically tantrumming. Thankfully, she was fast asleep early.

What hit me yesterday is that it's not getting easier. I think what was keeping me going is the thought that as Janey grew up, it would get easier. It did with William, it does with many kids. But it's not with Janey. Lately, it's gotten much harder. I can't sugarcoat it. I am so tired, physically and mentally. It is even worse for Tony---he works all day and comes home to a broken me, and then works all night taking care of Janey. It's hard for the boys, not having a relaxed home ever. And of course I know it's hard for Janey. The world must overwhelm her so much. I think she acts out in a vain attempt somehow to gain control. I can no longer think of my life having a movie ending, where things get resolved and we all fade out to a happy scene. I don't think that is going to happen. This is real life. Real tough life.

Dealing with autism---Four styles

I've been doing a lot of reading of autism blogs and books and articles lately, and I've been struck with the differing ways that parents deal with a child's autism. It seems to me there are four basic ways, and of course, lucky you, I'm going to break down what they are!

Before doing so, I do want to say that I don't think any one way is the right way. I can't stand the polarization in the autism community. Let's face it, autism is tough, and any way you choose to deal with it that doesn't hurt your child is your business. I can't possibly judge others, lest I be judged!

Here's my breakdown....

1. Fixing autism the medical way

This is the group that feels autism is a medical, biological disorder, caused by outside forces, and that is can be treated medically. There are a huge amount of subgroups here, but the common thing is a feeling that the child was not born to be autistic, that something caused the autism. This is the vaccine/mercury/ultrasounds/pollution/diet group. I think this group, overall, tends to be people that have led a fairly smooth life up until autism showed its face. They did not ever expect to have a disabled child, and they are going to do everything in their power to fix the child. In many cases, they have a fairly good income, as many of the treatments cost a huge amount. I would guess there are families that would like to go this route, but know the rest of the family would be left dumpster-diving for food once the bills were paid for the various treatments.

2. Fixing autism the educational way

This group is the big ABA group. They believe strongly in education, and provable progress. They get their children diagnosed early, as they are readers and are alert to the signs of autism, and they get them early into ABA programs, the best autism programs at schools and the most educational out of school programs. They devote unbelievable amounts of times to their children. I think these tend to be the highly educated parents, and ones that would also have devoted themselves wholeheartedly to the education of a non-autistic child. They write the books that end with a epilogue about their child going to a new school, where no-one knows they were diagnosed as autistic, and fitting in like any other child, except probably smarter.

3. Accepting the child's autism and expecting the rest of the world to also

This group wholeheartedly embraces their child's differences. They are the autism acceptance people. They think their child is perfect just the way they are, and the rest of the world needs to accept them as they are. I think this group is often parents that are a little on the spectrum themselves, and had a tough childhood because of it, and are determined that their children have a good childhood. They are the fighters for inclusion.

4. Accepting the child's autism but knowing the rest of the world might not

This group probably looks like slackers to the other groups. They accept their children the way they are, but do what they can to make the child better able to interact with a "normal" world. They might try a little of each of the other groups approaches here and there, but they are not do or die type people. They probably have other children, and might take a fairly relaxed view about a lot of things. Autism is not the focus of their life, although they adore their autistic child.


I would probably fall most into group 4, although I have a bit of 2 and 3 in me also, and I have utmost respect for the group 1 types. Every group has something to offer to the autism world. I don't think you can really choose which group you want to be in. Your personality, your background, your beliefs and world view----all combine to make you what you are. That's why it's crazy to fight. We all love our kids, we all want the best for them. We will all benefit from a world that understands autism better.

Toilet Training, or not....

If you are looking for advice on toilet training your autistic child----well, you've come to the seriously wrong place. Janey is not trained. Not at all. And not for lack of trying....

I've tried everything. And her school has tried very hard too. I've tried the scheduled sit on the potty, the put her in underpants so she knows when she is wet, the potties all over the house, the rewards, the calm but firm changing of wet clothes, and I've also tried a very detailed regime I found in a book about toileting training kids with autism.

And how has it worked? I'd say Janey has peed in the potty about 10 times total, in her life. About the same with the other kind of potty use. I think those times were pure luck, or Janey in a rare mood where it worked out.

And what's the problem? Much of it is Janey's ability to hold urine for incredible amounts of time. When I was putting her in underwear, she would often wake up dry, go to school dry, not pee at school and come home dry. That would be sometimes 18 hours without peeing. The minute she walked in the door after school, she'd pee all over. Before you ask, of course I'd try putting her on the potty the minute she walked in. She'd hold it then until she was off the potty. Often, by this point, she was crying from the frustration. When I talked to her doctor about this, he was alarmed---alarmed enough to say we needed to stop trying to train her, that holding your urine like that can seriously damage your kidneys. We stopped all trying, as did school, and she went back to a slightly more normal peeing routine, and so we didn't have to go for serious kidney testing as the doctor had said she would if she kept up the retention. I think she's learned to hold in urine, but not how to let it out without it just happening. Or maybe not, as she did go once she got home. Perhaps she somehow got the message that peeing herself is seriously bad, and that she has to wait until she's home or in a safe place to do so. I don't think anyone at school would make her feel that way, but let's face it---changing a wet kid at school isn't fun, and fellow kindergarteners or first graders are going to talk. Not that Janey generally cares or understands that kind of talk....If I sound like I'm talking in circles, I am. Because I just have no clue how to train Janey. Every book seems to assume that if you take a child to the potty often enough, they will eventually pee in the potty, realize they like it, and keep it up. They don't seem to reckon on near world record urine holding in.

It's frustrating, of course. It seems like toilet training is something that most kids at her level do get a lot more than her. But I could be overestimating her. Or it could be she just doesn't care. She isn't going to use the potty to please people, there aren't any rewards she cares a lot about, and so for her, it's a fine arrangement. The book that said it had a truly no-fail method for training kids on the spectrum was so far off for her it made me laugh. One of their big methods was to get plain colored underwear and draw a picture on it of something your child really likes, and then they wouldn't want to get the picture wet. Well, first of all, Janey loves to get things she likes wet. Putting things in water is one of her favorite pasttimes. Secondly, she very rarely notices what's on her clothes, to say nothing of her underwear. Thirdly, I can't really think what she likes enough for that. She likes some songs a lot, but she likes hearing them, not looking at pictures of them. She likes the Care Bears, but in a very specific way. And she already has Care Bear underwear (as well as lots of other characters, because that is a common piece of advice---get her excited about cool underwear. Yeah, right.

I'm sure I'm partly to blame. When I try a method for a month or two without any success, I do give up. I was also quite shaken by my doctor's words. He is the ultimate non-alarmist doctor. After Freddy had a near-fatal asthma attack, he summed it up by saying "we need to try to have that not happen again". It's not that he doesn't care, or isn't a good doctor, he just is low-key. And he sounded alarmed about the kidneys.

And so no, Janey isn't trained. It's not that hard for now. Since even now she only pees 2 or 3 times in a 24 hour period, we aren't changing her all the time. Her bowel movements are even less regular. But it feels like a failure sometimes. But it feels that way to me, not to her. Like a lot of things in her life.

Janey Outdoors

Day One of weekday vacation week. After yesterday's crying, I acted proactively this morning to try to keep the day from being lost. It's super hot here, almost 90, so before that struck completely, I took Janey outside for a long time. Generally, she loves being outside, and she did today, thankfully.

What I love about seeing her outside is how much she reminds me of myself at her age and up. One of the things I think I miss in having an autistic daughter is the chance to relive parts of my childhood (some of the parts I DO NOT miss reliving). But when it comes to playing outside, Janey and I are very much alike. I spent huge parts of my childhood outdoors. Not involved in sports or anything organized, just exploring and enjoying myself looking around. I grew up in rural coastal Maine, which I know realize is probably the best place on earth for that kind of childhood. Both the shore and the woods were within a fourth mile of my house. Janey has only an urban backyard, a sloped and not great one, but okay sized for the city. But she interacts with it as I once did with my big outdoor world. She looks at rocks, sticks, plants, bugs, birds, butterflies. She digs in dirt. She plays in water (but hers has to come out of an outdoor tap) She goes barefoot, as I always did, even when walking through the woods. She talks to herself, as I often did (inside my head once I realized the outside the head talking looked odd, but I think at seven I might not have realized that yet) She examines her shadow. She dances around. She lies down and just looks at the sky. I feel so happy watching her. It's something she can do without there being a level she must do it at. Words aren't necessary. Birds scold her from the trees for being close to their nests just as they would to a "normal" kid. They have no idea she isn't, and for the time she is outdoors, she isn't. They see her just as a human being, and she is.

Tough Days

The last few days with Janey have been very, very tough. The crying is back. She screamed huge parts of yesterday and today, with this night being the worst. She cried solidly for at least 3 hours. It's almost unbearable to hear and see, and I am very sure it's almost unbearable to be her when this is going on. We have no clues what's up. I don't think she's sick, nothing really happened out of the routine---she wouldn't know it's vacation yet, unless she somehow understood the talk of it, which I doubt, we did the things with her she usually like---but still, just incredible amounts of crying. I don't do well with it. I just want to make her happy, to make it stop, and if the boys ever cried past babyhood, I'd talk with them for hours if it took that, cuddle them, work it out somehow. But I can't do that with Janey. She generally doesn't want comforting, she can't tell us what she wants (although she does obsessively ask for Kipper or Care Bears or milk when she is upset, but she doesn't really want those), she has no real coping skills when whatever it is upsets her.

I feel for the boys. Her crying is so often the background noise of their life. Tonight, as we were trying to get her to sleep, William wanted to play guitar and Freddy wanted to play on-line video games. They were both in their rooms, but our house is small and it wasn't working---it was waking her up. I had to ask them both to stop. Last night, we made a feeble attempt at a family night out---we tried to drive to Dedham and get some Five Guys Burgers or Chipolte. No go. Janey screamed hysterically as we tried to go in. So I sat in the car with her and with Freddy, neither of us able to make her happy, while Tony and William grabbed something fast. A car was in the lot facing ours, with a woman in it who glared at me the whole time they were in there. She probably thought I'd done something to make Janey cry, or thought we were crazy parents for dragging out a crying child, or maybe she thought I wasn't being strict enough. Who knows what she thought, but for someone like me, who hates that kind of standing out and attention, it was torture. I kept wanting to go over to her car and scream "She's autistic! Would you like to try to do a better job with her? You are MORE THAN WELCOME to try!"

Now she's asleep, and my headache is finally fading. I hope this storm is over. For now.

Vacation week thoughts

This is the first day of the spring vacation. Optimist that I think I am deep inside, I start most vacations feeling fairly hopeful about them. It's good to have a break in the routine, and especially, for the boys to have a break from the intense world of high school. But mixed with that feeling is the dread I have of facing more than a week of keeping Janey happy and entertained.

The hard part is dual, really. Just keeping Janey happy in general is often a challenge. When she gets into a down period, she can cry for days on end, and it can be incredibly tough, both for her and for us. We've had a few vacations where that happened, but overall, I would say it happens less often than it used to. Keeping her entertained is the harder part. And that's where the dual problem comes in. With "regular" kids, there are endless things you can do to keep them happy during vacation week. You can pick up any parent's paper and see them---camps, children's museums, special vacation week programs at other museums, family restaurants, lessons, outdoor hikes---and then there's just the playdates and playing with friends that "regular" kids have. With Janey, none of that works. We get a nice little booklet here in the city called "Summer Stuff Jr." that lists summer and vacation programs for kids. There is not a one in there that could handle Janey. I went to a camp fair one time, and not one camp there was equipped to handle lower-functioning autistic kids. And I can't blame them for that. It's a hugely tough job. But it's the flip side of inclusion. School is inclusive, the world is not. If those camps excluded people based on color or religion or nationality, it would be an outrage we'd all condemn. But excluding kids based on disability----well, even I can't get totally outraged about that. We live in the real work.

And even with camps excluded, there is so little else we can do. Janey can't handle the overload of a museum or the mall. Eating out---that's something we attempt about once a year, when Janey is in an exceptionally good mood and we are all together. Even then, we often have to bail out. Playdates---well, that doesn't happen. All the kids like Janey, but no-one is going to invite her over for a day. It would be not a playdate, but a huge respite job for the parent. Even if I went with her, there would be no relaxing with coffee while the kids played.

And so we stay home, mostly. The boys like that. They can entertain themselves for years at home in today's connected world. But with Janey, the days get long. We play some iPad, watch some videos, play in the back yard, read books. None of those hold her interest for long. And she's left bored, and I am left tired.

What am I saying here, besides a rambling complaint? Well, my dream would be that some of the money given for autism would go for vacation and holiday week activities. Maybe a bowling alley could be taken over so autistic kids could have fun in an accepting environment. Maybe a museum could have an autism day, where no-one would mind the flapping and screaming and crying and odd behaviors. Maybe the empty schools could be used for a camp. There are a lot of families like ours. I dream of something like a "Summer Stuff Junior for EVERYONE".

Assorted Janey Stories

1. Yesterday when arriving at school, Janey went into the office, went up to an old friend of mine that was working there and said "I want coffee", pointing to her cup of joe. I was sheepishly forced to explain that yes, indeed, Janey has a cup now and then. But just on weekends! It's not like she has a problem or anything!

2. A few afternoons ago, Janey replayed her Dennis the Menace routine. Literally within 15 minutes, she dumped a whole canister of Strawberry Nestle Quik on the kitchen floor, poured a bottle of bubble stuff on said floor and then moved on to the living room and opened up her No More Tears Tangle Stray and poured it over the remotes. She took advantage of my cleaning up each spill to move on to the next. Amazing.

3. Janey continues her dysfunctional relationship with The Care Bears Movie. She wants to watch it all the time, despite the fact that the scary parts (and it has more scary parts than you'd think a young kids' movie would) terrify her. She had a flashback in the car to a line that says "The boat is moving by itself!" and worked herself into tears, but couldn't stop obsessing over watching the movie once again when we got home.

4. One of her new favorite songs is "Better Than This" sung by Brad Paisley. She sung out her favorite line loud and clear at the grocery store the other day.."If a busload of women, really good looking women, should suddenly pull in here..." followed by the lyric "Hundred Gallon Keg of Beer!" Tony was glad no-one much was around to hear right then.

5. Janey is still loving the "Tell the cats to say hi to Janey" game. She points to them all the time and says "Say hi to Janey! Say Good Morning to Janey!" She loves feeling superior to them.

6. An ABA specialist at the school (not Janey's, but they all know her!) told me yesterday that Janey saw her across a room and ran over and gave her a big hug, and it made her day. We talked about how if Janey does that, it means a lot, as she does nothing just to be polite. If she hugs you, she means it!

7. Janey always calls her ABA specialist "Mr. McKen" His name is Ken, but both her classroom teachers have "Mc" at the start of their names, so Janey I guess figures that's a prefix that means "teacher".

8. Janey is awake now, so I better stop this list, unless I want to see what she might like to spill on the floor next.

What causes autism? And does it matter?

Well, of course it does matter, but by that, I mean does it matter to children and families already living with autism? It certainly matters to those future children who could potentially be prevented from becoming autistic if we knew what was causing it, but in a lot of ways, it doesn't matter much to Janey, or to me, in terms of our day to day life.

That's not to say I don't wonder, but I can't say I think a huge amount about it. That's been hard lately, as every single day, it seems, there's a new article out there with a new potential cause. They can't all be right, or maybe they can---I do think autism is caused in different ways in different kids, and they might ALL be a cause. But that leaves more answers than questions if it's true---which one caused MY child's autism? And it opens up the feeling that I think probably almost all parents of a child with autism have had---"it's my fault somehow" I know rationally it isn't. I don't take the credit for Janey being so beautiful, or my sons being quite the bright guys, or for William being musical or Freddy being a good actor. I don't take the blame for Freddy's health issues or any character flaws either of them might or might not have. So it stands to reason I shouldn't take the blame for Janey's autism, and in general, I choose not to.

But the list goes on---genetics, vaccines, older fathers, close spacing between children, overweight mothers, medication taken during pregnancy, mercury, thyroid problems during pregnancy, pre-eclampsia, ultrasounds, low birth weight, lack of oxygen at birth, diet, autoimmune disease, viral infections, brain defects, rain, too much TV, Tylenol...well, a huge amount of things. A fair amount of the list applies to Janey, making me think it would probably have been more of a surprise had she NOT been autistic, almost. But of course that's not the way to think, and it shows the problems with a lot of those theories---why don't ALL kids with those risk factor become autistic? Obviously there must be more than one factor at work in most cases.

If I personally had to guess about the cause of Janey's autism, at the current time I'd put three factors in the most likely list. First is the autoimmune disorder idea. Almost everyone on either side of our family has some kind of autoimmune problem. This goes along with factor two--preeclampsia. I was severely affected by this during my first pregnancy, and was to a fair extent while pregnant with Janey. My third thought is the severe reaction I had to a blood pressure medication I was given at 12 weeks while pregnant with Janey. These three factors all tie together. But who knows, really? I think most of autism is probably like that---caused by an interaction of factors. This is why I try never to get into the fray of arguments about what causes autism. I think everyone is right and everyone is wrong. Some cases of autism probably are caused by vaccines. Some are caused by genetics, some by birth injury. Most by a mix and match list of many factors.

But the end result, no matter how you get there, is autism. It's like the stupid Holland story. No matter why you ended up in Holland instead of in whatever country you were aiming for, you're still in Holland. I'm content to let the research and battle over what caused Janey's autism fight on without me joining in. My fight now is to give her the most meaningful life I can.

Janey and The Care Bears

In some ways, The Care Bears have come along for much of Janey's journey through autism so far. She loved them starting at a very young age, long before she'd ever seen the show. Somehow, we had gotten her a few of the bears, and I can remember her at 1 and 2 carrying them around, and learning the names of a lot of them. I would sometimes take her to the toy store to get a new one, and she would pick out the one she wanted, and be excited about it. At the time of our cross-country trip, during which she turned 3, she loved them most of all. We must have had about 10 of them in the car with us. She watched "The Care Bears Movie" on a small DVD player she held in the car. When she had her birthday while we were in Olympia with family, my grandmother wanted to get her something special, and I suggested a Care Bear. I remember picking out Grumpy Bear, a bear she had wanted but we hadn't been able to find. I was a little surprised she wasn't more excited upwrapping it.

That birthday always seems like a dividing line to me. On the way home across the country, Janey was less interested in the Care Bears. By the time she started preschool a month later, autism had fully gripped her. She had little interest in the Bears, or anything else.

Since then, she has been off and on about watching the videos, but never again interested in the stuffed animals. We had some old episodes of the TV show that came with bears I bought, and she got into watching those for a while. There used to be a movie on Netflix, Journey to Joke-A-Lot, that featured the bears and that she watched a lot. But her interest was narrow. She liked the shows, and reciting from the shows, but she didn't know the bears apart, or care about them much, I don't think.

Lately, she started asking for the Care Bears Movie. For days, she wanted to watch it, but could only stand the first few minutes. When it got to the opening credits even, she would scream and cry. But then a few minutes later, she'd ask for it again. Although it was frustrating and inexplicable to us, we bore with her. Over this long weekend, gradually she started watching more and more of it. Today, she's watched the whole thing intently several times, and seems to have memorized much of it. She says the lines before they come on.

I wonder if she can remember how she used to love the movie long ago. I don't think it's the case, but I wonder if she felt upset about that memory when first seeing the movie again after the long years. Did she somehow realize that she wasn't the same now? Did she feel it was important to be able to watch it again? I'm probably thinking wistfully here. I don't think Janey has thoughts of that complexity. But it's making me cry to think of. Maybe it's a good sign she's getting the interest back. She's very happy watching it tonight. Who knows what goes on in her mind? I wish I did.

What I fear most

This news piece illustrates what I fear most. A non-verbal autistic little girl, abused on the school bus by a sadistic aide. I want to be sure to say I am not saying anything against bus drivers or aides. My bus driver growing up was one of the finest men I've ever known. The aides at Janey's school---I can't say enough about them. They are wonderful people. What was done to this child was done by someone who, scarily, could be anyone. There are sadistic people out there. And there are people who might not be at all sadistic, but for whatever reason are in jobs they should not be in, people who are not able to deal with disabled children. It's not a job for everyone. Autistic kids (like all kids, but to extremes) can be incredibly frustrating. I would hope anyone caring for such a child would have that trait that would make them not able to hurt the child, no matter how frustrated they are---the love of the child. The love that makes you stop and take a breath and not do something that will hurt the child. I am blessed to have people like that caring for Janey. But I fear the future. I don't think my fear is unreasonable. Janey most likely will not be able to say if someone is hurting her. She can be hard to deal with. I can see her being this girl on the bus. Or the boy at the school Janey is slated to go to some day that was abused. It just takes one person, one moment of losing it, or giving in to horrible impulses, or taking advantage when you think you can, to hurt a child.

I have to have faith to let Janey leave the house. I have to trust that those around her love her and care for her, and will know if they need a break, and will be watching her always, and noticing who else is near here. I do have that trust of her school. But she will be in other schools, some day, or other situations. It's enough to make me want to keep her with me always, but I know that doesn't serve either one of us best.

It's probably harder to do anything about the sadists, as the woman charged here sounds like. I will say I wish she'd gotten a hundred year prison sentence, instead of the slap on the wrist it sounds like. I hope she burns in hell. That's not my usual kind of talk. But it's what I feel. However, what I think something CAN be done about is people that for whatever reason find themselves in over their heads. There are people that are not going into it all planning on hurting children, but they might find themselves handling a child who has cried for hours, or is not toilet trained and has yet another accident, or who might be very tired on a certain day. If that internal guard is not on, the one that I think can only come from truly loving the child and empathizing with them, a person that might never see themselves as an abuser could become one. I hope that all who care for autistic children are treated decently, and are trained well,and paid well, and screened well. If they are overwhelmed, I hope they will speak up, and get a break. If they find they no longer think they can do the job, I hope they will do the right thing and find another job.

This is a raw post, because of the raw feelings reading that article brought up in me. I'll close by saying a million, trillion thank yous to those who are so wonderful to Janey. I am more grateful to you than I can ever say.

Tired, just...tired.

Lately I've been very, very tired. It could be a health issue, but I don't think so. I think it's more likely mental exhaustion, maybe masked depression. I know there's nothing more fun that reading about someone else's depression---big sarcasm alert there, of course. I try very hard to stay positive, and on the outside, and even to myself, I can feel that way a good deal of the time. But then there's the tiredness. It's the kind of tiredness where I can sleep what I think is a good eight hours, but then during the next day, I can't think of much else but napping. I can't get work done, or concentrate on much. It's a little much.

This article talks about stress and fatigue in mothers of autistic kids. It's very true. I can't say it's like being a combat soldier---that's probably going a little far. I don't worry about being shot at all the time. But it's a 24 hour a day job. The two extra hours of caregiving a day seems a little low to me. Every single hour except when Janey is at school is an hour of caregiving, and the intense kind. If Janey is out of my sight for more than half a minute, I am alert and going off to find her. It's literally never-ending. At any point, she might decide to cry for hours, and that is a lot like when a baby has colic, I realized the other day. I had two babies with colic, and I found a book about it in which a Vietnam vet said it was worse than anything he's experienced in Vietnam. Again, I don't think it was that bad, but it was pretty hard. It's a child you love so much crying, and you don't know why. When it's colic, it's for couple months. When it's autism, it's forever. When Janey tantrums and cries, I almost always don't know why. And you can't do what they always say to do if you are overwhelmed by a colicky baby. You can't put her in a crib and walk into the next room for a few minutes (not that I ever much was able to do that with babies, either). You have to make sure she doesn't hurt herself, or wreck the house, or try to go out the door. Even when she's happy, the alert doesn't go down. She tries to eat anything. She gets notions to throw things. She gets so happy she gets crazy-happy and can fling things around in excitement.

Writing this, I can understand my own tiredness. But understanding it and letting myself give in to it and rest are two different things. Something in me tells me I have to be productive, that just resting is not an acceptable way to spend time. The opposite impulse, to get the rest I need, overwhelms me often, and that creates guilt. I rest, but I don't relax, as I feel guilty all day I'm not getting more done.

I don't have a solution here. It feels good to write about it, to work it out in my mind a little, but I know it's not going to change any time soon. Maybe that's all I can do---keep writing and reflecting, and possibly someone out there in the similar situation will know they are not alone.

Autism in girls article

Here's an article about how autism differs in boys and girls. There's been a lot of news about autism out there the last few days. I try to keep up with it to some extent, although I avoid getting obsessive about it. Articles that talk about autism in girls, of course, capture my attention.

A few interesting points in this article----It talks about how with a higher "degree of cognitive impairment" (it seems forbidden to say such things are retardation or low IQ), the ratio changes from 5 boys to 1 girl to something closer to 1 to 1. Autism doesn't hit girls as often, but when it does, it often hits harder. The article speculates that this might be because in higher functioning girls with autism, their innately high level of social skills masks the signs. I can see how that might be. The article also says girls on the spectrum have less repetitive behaviors and less sensory irritability. This fits Janey. She does a lot of repeating of phrases, but not a huge amount of repetitive behaviors like spinning. She has a pretty low level of sensory irritability, too, except for certain sounds. She never minds things like sticky hands or being barefooted. She actually probably seeks out sensory things, which I know can be an issue too, but a different kind.

I wish I could find a study to enroll Janey in specifically about autism in girls. I'd love to have our family be part of learning more about this subset of autism.

B....Glory Glory Hallelujah!!!

Janey's special ed teacher had written to me yesterday that Janey was starting to recognize letters. I hadn't seen it in action yet, so this afternoon I drew an upper case "B" on her iPad and said "Janey, what letter is this?" She glanced at it, and said with complete ease "B!" I of course grabbed her, hugged her, teared up. She looked at me like I was a bit daffy. William saw it too, and I called Freddy in and she repeated the feat, as she did again when Tony got home. I pushed my luck and tried a few other letters, but she had done enough showing off for today. This is the first time EVER I've seen her identify a letter.

Now I sound like someone winning an Oscar, but I want to say a thank you---a huge thank you to the teachers and therapists at Janey's school who have been working with her on letters all year. A special thanks to Jen and Mr. Ken! And thanks to the iPad, an amazing little machine, which would not work in isolation but which makes Janey WANT to practice skills for hours at a time.

My negative inner voice likes to pipe up at times like this---"yeah, she's 7 and a half and she named a letter. Let's put off the ticker-tape parade" But I'll tell that inner voice to shut up for tonight. I'm very, very proud of my girl.

Theory vs. Practice

Janey brings me the remote. I know perfectly well what she wants. She wants to watch "Pools, Parks and Picnics", an episode on Netflix featuring Kipper, her favorite little British dog from way back. However, I want her to ask me. So I pretend I don't know. I say "What do you want?" She just smiles and keeps trying to hand me the remote. I try hard to resist. I say "When you tell me what you want, I'll put it on". She stops smiling, and looks upset. I try to go on with my morning. The boys need to talk to me, need to eat breakfast, need lunches, need just plain time with me to talk. Tony has things he needs to discuss. The cats are meowing for food. And Janey follows me around with the remote. She is getting more upset. I try to hold out. It's important to have her talk, to say verbally what she wants. I try giving her a template "You want to watch...." She starts crying. I know the morning is about to be lost. If she gets upset, that's it. We don't get her back for a long, long time. Freddy has been waiting to talk to me. William needs a uniform shirt that is clean. I am aching for coffee. I give in a little more. "Which Kipper do you want?". She says "KIPPER!" The morning is falling apart. I finally say "Do you want 'Pools, Parks and Picnics?'" She echoes "POOLS PARKS AND PICNICS" I put it on, and turn to the rest of the demands.

That's theory vs. practice. In theory, I should hold out. I should wait for Janey to ask me, as she CAN do, as she has in the past. I should say things like "I know you're frustrated, but you need to tell me what you want" In theory, she will see my point and do that. In practice, she will tantrum the rest of the morning, and the boys and Tony will yet again be ignored. I often follow the theory. I believe in it. I do my best to hold to it. But in practice, Janey doesn't live in a vacuum. My boys need me too, my husband needs me, and I need to stay sane.

Janey is watching her Kipper show. I've only had to stop three times during this writing to get her things she needs, things that she by the way asked very nicely for "I want oyster crackers! I want water! I want change my pullup!" We are all fairly happy. There is no lesson here.

World Autism Awareness Day

I wanted to write something profound for World Autism Awareness Day, something that justified that all caps name. I know it's a made-up holiday, just short of a Hallmark Holiday. I know it's become a little disliked by some in the autism community, for various reasons. But somehow I wanted to write something that summed it all up, that let anyone reading this know what I would want them to know about autism. I actually wrote several pieces which I discarded. I couldn't quite get it right.

So the picture is my contribution. Janey is the autism I am aware of. She is my beautiful, amazing, infuriating, puzzling, fascinating and lovable example of autism. This day's for you, Janey.