My surprising thought, twice this weekend

Twice this weekend, I had a thought that I don't usually have.  I thought "I'm glad Janey is autistic".

I hesitate to even write what I wrote above, for a million reasons.  A few of them---I don't want to ever be a Pollyanna, someone saying that autism is a blessing.  And the inverse---I don't want to say that I usually don't want Janey to be who she is.  My usual state of thinking goes along the lines of wishing that Janey wasn't affected by the tough parts of autism.  Autism hasn't been terribly kind to Janey.  She is not one of those autism poster children, the kind that I think are pretty rare in real life, the kind with futures so bright you have to wear shades.  Autism has taken away much from her.  But that doesn't mean that she isn't an amazing person, someone I value very much just as she is.  But feeling glad she's autistic?  No, usually not.

So what happened this weekend?  Well, first, I realized that despite my burying my head in the sand, soon both boys would be out of the house.  We put the deposit down for Freddy to go to Skidmore College this fall.  He went to visit for three days there, a preview of life without him home.  Next year, come September, both boys will be in college.  It's harder than I ever pictured it would be to face that.  Of course, I am thrilled my boys are going to college, to colleges that will challenge them and allow them to explore their interests.  William loves Brandeis, and I think Freddy will love Skidmore.  But they won't be at home, and selfishly, that is very hard for me.  I loved being the mother of teenagers.  It will be very, very quiet without them.  And then I thought---this probably won't happen with Janey.  She isn't going to leave.  We get to keep her home.

It's a sign of how Janey's moods change that during her worst times, the thought of her being home forever leads me to despair.  But she's in a sunshine mood lately, and I have become by necessity very good at putting aside bad times when times are good.  When Janey is happy, none of the rest matters.  It doesn't matter that she isn't toilet trained, that she has a hard time talking, that she has very few academic skills.  It only matters that she is my daughter, my funny, unique girl.  Now, a few weeks from now, when the screaming and sadness most likely will have returned, I know I will feel differently.  I'll still love her desperately, but I won't feel as optimistic.  But I'm talking about how I feel right now.

Not our actual soup, but something like this!

The second time I had the "I'm glad Janey is autistic" was a littler thing.  Tony had made up a big soup of various vegetables.  We get a bin of organic fruits and vegetables every week, and he loves trying them.  He was sharing with Janey, and noted, as he often does, that she was only eating the green stuff---the kale and collard greens, not the rutabagas.  And I was thinking how much she loves the foods she loves, and cares not a bit or even knows that most kids don't like what she likes.  I was thinking about her dream mornings on the weekends, watching Tony cook and eagerly eating what he makes her.  And how most 10 year old girls would already be at the stage where a fun morning at home with Mama and Daddy, eating greens, would not be a thrill to the point of dancing around.  And again, I thought "I am glad Janey is autistic"

The truth is, of course, I'm not glad Janey is autistic.  This is because Janey's autism isn't her.  It's something she has.  You don't love a child for things they have or do, you love them for being them.  I don't love my boys for getting into college, for their senses of humor, or even for their kindness to their sister.  I love them because they are my sons.  And I love Janey because she is my daughter.  I love her just for being her.  But at times, I can love, separately, the traits that she has that are partly because of autism.  I can love the life situations that autism creates, like knowing she will probably never leave home.  I don't love autism.  But I love Janey, a girl with autism.

The Back Yard

Today has felt a lot better than yesterday.  Janey has cried a little less, but a lot of it is just me trying very hard not to be negative.  When she cried some this afternoon, I worked hard to keep my voice upbeat, and said as cheerily as I could "Let me know when you ready what is upsetting you or what you need, and I'll help" and I walked away a bit.  A few times she did (cheese, go outside) but other times she just cried a while and then stopped.  And I kept my sanity.

Going outside is Janey's favorite thing, with the possible exception of music.  She loves to be in the back yard.  This afternoon, I took a bunch of pictures of her, for fun and to show what DOES make her happy, as so much of this blog is about what DOESN'T make her happy!  Our back yard isn't a showplace, but it's fairly good sized for a city yard.  It's on a slope, which doesn't bother Janey---she likes running up and down the little hill.  The times when Janey is outside, making up her own games and just enjoying nature, are the times she most reminds me of myself as a girl.  That's what I did, every available moment.  I love seeing Janey play in a way I completely can relate to!

                                                     Janey looking at the grape vines....

Making up a game with a ball and a bucket

Examining a bunch of leaves

Jumping for joy

My sweetheart in the sun

And here's a few bonus pictures.  The first shows a habit that Janey does all the time---pulling on the side of her eye.  I'd be curious if any other girls (or boys) with autism do this.

And here's a picture of Janey's toes.  Ignore the dirty feet---this is after running around barefoot!  What I wanted to point out there is the left foot (which is to the right in the picture!), how the 2nd and 3rd toes are mildly joined, like they have a common root.  They sometimes also overlap.  I've looked this up, and saw it was connected to a few genetic things, and I was wondering if any of your kids have toes like hers?

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!

The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

What a difference a few days makes

Janey had a very tough stretch around her birthday. From about Tuesday to Saturday, much of each day was taken up by hysterical crying. It was awful, for her and for us. We really had and have no idea what was wrong. This kind of stretch seems to happen about three or four times a year. Thankfully, and knock on wood, the length of the stretch seems to be getting gradually shorter over time. But it's still almost impossible while it lasts. And then Sunday, Janey woke up happy. And she's been happy, most of the time, today also. I hope it lasts. It tends to, once she gets out of the sad stretch. She's not manically happy, just regular cheerfully happy.

And of course I would guess I'm not the only one thinking this sounds a lot like manic-depression, or bi-polar disorder, or whatever it is called now. Whatever it is called, I've read it is no longer diagnosed in children. And I guess I'm kind of glad of that, in a way. I don't need any more labels for Janey. I hope by the time she is an adult, she doesn't get these spells. But the fact remains that something sometimes makes her very sad for a while, and something sometimes makes her manically laugh all day and be very wound up and wild for a while. Whatever it is, it's enough of a pattern over the last 5 years so we can kind of recognize the moods coming on and going away.

When Janey gets happy after being sad, it's wonderful. We appreciate her all the more. Tony and I look at each other many times a day and we are both thinking the same thing---if she could be happy, nothing else matters---the autism, the retardation, the lack of skills like toilet training---none of it. She can be the most delightful child on earth. Tonight she was thrilled to "help" Tony with laundry, thrilled to eat a supper of hot dogs and cabbage slaw, thrilled to watch a Disney video WITHOUT singing that she had never seen before. Earlier today, she said to Tony "I want soda!" and he said "I want soda too" and then just to be funny, "I want soda three" and she said without missing a beat "I want soda four"! This afternoon, she said "I want to go to Va-Vere Beach, but that's silly. Maybe the weekend" I've never heard her say "weekend" before. I know she was quoting me, but it was still great to hear.

I wonder all the time what is in Janey's head. What drives her moods? What does she think about? How can I help make sense of the world for her? I just don't know. I'm going to keep trying to figure out, though.

Happy Mother's Day

I want to send out Mother's Day wishes to anyone reading this, whether you are a mother of your own children or not. If you care about children, you deserve a day.

It's been a very nice Mother's Day. Tony and I often joke about how bad some of my past MDs have been! It seems like everything always went wrong, or everyone was in an extra bad mood, or someone was sick. Today, everyone was happy and healthy. William surprised the heck out of me with special cupcakes he bought on his own from Rosie's Bakery, with the most delicious frosting I have ever tasted. Freddy made me a card with an assortment of photos and sweet words. Janey was cheery and said "Happy Mother's Day!" with a little prompting. Tony made me some French Onion Soup and gave me a big break. I spent most of the day reading sci-fi short stories.

I've been feeling a little more positive about mothering and autism lately, which you probably can guess is directly related to Janey's extended good mood. Yesterday, we went to some lawn sales with her, and had a sit-down lunch at Burger King--as fancy as we usually try with her. Just Tony, Janey and me, and it felt nice. We enjoyed seeing her enjoy the food, we put the little crown on her, we all ate well and laughed and enjoyed ourselves. In the middle of the meal, I was struck by something---that this was a preview of the rest of our life. The boys will move on and out, and although they will always hopefully be a huge part of my life, they will have their own life. And the unit left will be the three of us. On most days, that scares me, but yesterday, for a moment, it felt good to think about. I could see it working.

I will be a mother forever, like every mother, but unlike most mothers, I will probably be a hands-on, child at home mother forever. It's overwhelming, but for today, for a present to myself, I am going to think of the bright side of it. I always wanted to be a mother, and I always will be one.

I can be cheerful too!

After reading other autism blogs yesterday, I was set off on a thinking trip. I can't write a totally cheerful blog---that would be a fiction blog. But I can say honestly that there are more than a few parts of raising Janey that are a lot of fun. I thought I should make another list---let's call it "Six Good Parts of Autism Parenting!"

1. Sharing her interests. Janey doesn't have the obsessive special interests that many higher functioning kids with autism do, but she has changing interests that become quite obsessive for a period of time. Most of them are videos. She adores Kipper, and we all have become pretty fond of the little dog also. We quote episodes, argue about favorites and appreciate how well done they are. We've gone through the same thing with Angelina Ballerina, Care Bears, The Wonder Pets, The Backyardigans and so on. Often it's a certain one episode she really gets into, and it can be extremely annoying at first, but strangely, sometimes after 100 viewing or so, it becomes part of your mind, and you notice cool things about it.

2. Her lack of ability to be mean. Girls can be very, very mean. I know---I was a girl. Even seven year old girls are starting to be mean---to tell their mothers they hate them, to exclude other girls, to have that ability to figure out the one thing that will hurt you most to hear and to proceed to say it. Janey doesn't do that, because she can't. I don't think she'll ever able to, and there are worse thing than having a daughter who will never be cruel.

3. The words we all pick up. Janey has limited speech, and she puts the words she does know together in unusual ways sometimes to get her point across. For example, cheese is "cheese cutter" because you cut it with a knife, which she calls a cutter. So we ALL call cheese cheese cutter now. Because we taught her to say "please" by saying "Can you say please?" that is how she says it every time---"I want cheese cutter! Can you say please?" We've picked that up---I'll say to Tony "Could you empty the trash? Can you say please?" It's simple fun for us simple folks.

4. The people you meet. Yesterday, I was having a rough day---just a depressed day. I went to pick up Janey at afterschool in a mood. But by the time I left 10 minutes later, I was feeling a huge amount better, just by spending a little time with a small percentage of all the wonderful people who care about Janey---the teacher she will have next year (thanks, Amy!), the after-school director (thanks, Michele!), a devoted parent who works tirelessly for her own special needs child and others (thanks, Dianne!)---and that's just a tiny sampling of one day. Janey brings me into the path of some great people.

5. The joy when Janey learns something. I was thinking this morning---I can't remember when either of my boys first wrote an alphabet letter on their own, or solved a math problem, or wrote a sentence, or read a book. I should remember those things, but I don't. It's because kids learn in such a rush. One day they are just starting to talk, the next they are taking pre-calculus or physics or Latin. But when Janey learns a new thing, it's cause for celebration. If she ever writes her name, or reads a sentence, it will be a landmark day. The first time I saw her doing a letter matching game with ease on her iPad, it felt like Christmas. When learning is hard-earned, you notice it, and celebrate it.

6. It's hard to put this most important wonderful part of Janey into words. I'll tell a little story. The other day, I saw a mother at school who had recently lost her mother. I was trying to find the words to tell her how sorry I was. While I was doing that, Janey walked up next to her and held her hand. I am sure Janey didn't understand anything we were saying, but somehow, because that was what she wanted to do, she did the perfect thing. The mother wrote me a note that brought me to tears about what that meant to her. When Janey hugs you, it can break your heart with happiness. She does nothing to be polite, or socially correct. She seems to be able to know what people are kind at heart, and to love them for it. More than a few people have been touched by Janey. I feel almost phony writing that line, because it goes against my "just the facts ma'am" line on life with autism, but it's too true not to include.

And so now, off to attend to my little sweetheart, who has been poking me with a spoon for the past half hour and demanding "purple ice cream". Never let it be said I never wrote a cheerful post!

Wow! What is it?

Today after school, as we were walking to our car, I told Janey I had a treat for her in the car. She said "Wow! What is it?" And that, my friends, was one of the best moments of my life so far. To have Janey casually say that, a totally appropriate response, in a completely "regular" tone of voice, was nothing short of a miracle to me. She has NEVER EVER said anything like that before. I don't think she's ever asked me a true question before, to say nothing of one about something that "normal" to want to know. It was fantastic. I was able to tell her special ed. teacher right away, as we were passing her, and she understood what a breakthrough it was, and said they had been working on that kind of question.

That capped off a few great days. Janey has been cheerful, talkative, just a lot of fun to be with. School is going extremely well. She seems eager to go each day, and happy when I pick her up. She is happy at afterschool, so much so the principal took pictures of how happy she was and sent them to me, which I very much appreciated! Both her teachers seem to get her, and care for her, and want her to do her best. I know enough not to take that for granted, from so many other parents I have heard from, but in my own life, that kind of teaching has been the norm, and I am very lucky for that.

I'm always unsure exactly what causes things to go well, just as I am unsure what causes them to go badly. I think a little success breeds more success. A few other moments lately have been making me think about how important even a little communication ability is. In the CVS the other day, Janey picked out a big bag of Funions (the crispy onion things) and wanted them. She was so cute with it I had to get them, although they are not really a food stable I like. But it made me think how that's the very thing of it---if she hadn't been able to get it across to me she wanted them (in this case by picking them up and handing them to me) I never would have gotten them, or realized she even liked them. She would be more subject than she already is to my guesses as to what she likes, which I am sure are often wrong. The other day, she wanted to watch Kipper on Netflix. She can say "I want Kipper" well, but not the episode she wants. Sometimes she quotes a line from the one she wants, and we guess, but more often, we put on the wrong one and she throws a fit, and we all get frustrated. This time, she said, slowly and a bit painfully as she often says new things "Head in a box". We had no clue at first---it sounded a little horror-filled. Then we looked at the little pictures that go with each episode, and one showed Arnold, Kipper's little pig friend, with his head poking out of a box---part of a magic trick Kipper does to him. It was exactly what Janey said---a head in a box. Tony and I looked at each other in amazement, and put on the episode. Who knows how long that had been the one Janey wanted to see?

It makes me happy she is learning how to ask for things she wants, but it also makes me a little sad, thinking of how often she can't, and of the many, many other kids out there that can't share what they are thinking or what they want.

A PS to this one---Tony just came over and hugged me, and Janey said "Give me a hug too!" Another amazing thing to hear.