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.