Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

The parts of life Janey will be spared

I'll never be paternalistic enough to say I am glad that there are parts of life Janey is lucky to miss.  It's not lucky to not get to experience all life has to offer.  However, there are trade-offs involved in not really being aware to a large extent of the world around you.  There are pains that Janey probably won't feel in life.  No mother wants pain for their children, of any kind, although they are part of a full life.  So in a tiny way, I'm glad that she is unaware enough so that while she can't totally participate in many of life's events, she also doesn't have to feel some of the deep pains life brings.

What made me think of all this is the election.  I am not very political, but my older son is.  He was thrilled to vote for the first time, and quite happy with the results, but that will not always be the case in his life.  He will feel the frustration and sadness that the world doesn't share his deeply held views.  Janey has no awareness of politics in any way.  Last night I was trying to get her to say "Barack Obama" and "Mitt Romney", why I am not sure, just because those names were out there a lot.  She tried a little, but I realized it was a silly game.  She doesn't know they are people, she doesn't care.

Then there's the social world of girls.  Girls are cruel, often.  I know that.  I was a girl.  Girls are far crueler than boys mentally.  Freddy has seen that, and is shocked sometimes at what the girls around him do to each other.  I think about 7th grade, for every girl out there.  It's hell.  You are judged on every word you say, every action you take, and there are always mean girls, waiting to take you down.  Even if you are one of the mean girls, you know you sit uneasily on the throne, and your ladies in waiting might turn on you at any point.  It's a scary, scarring social order.  Janey won't have that.  If she is teased or excluded, she won't notice.  If she is ignored, she won't care.  She lives in her own world, which is apart from that intricate and often cruel world of girl friendships and enemies.

Janey is sad a lot, of course, but I would not say she's ever worried.  Worry has consumed huge parts of my own life, but worry takes awareness of the future, which Janey has very little of.  She vaguely knows we go to school each day, that sleep follows being awake, that there is supper and then dessert, or hairbrushing and hairbrushing being over.  But she doesn't lie awake nights worrying.  She doesn't have the brain setup to do so.  She might be scared, in the moment, or sad, or angry, but worry?  No.

Most all of us have things we want.  I want a computer that would run a game I wish I could play, a better house, money to not worry about bills, a car that I know will last a while.  The boys want better guitars, more video game systems, snazzier clothes.  Tony wants a Kindle, a Fiat, a pinball machine.  There aren't consuming wants, and we know we won't get a lot of these things, but the wanting of material things is a part of our life.  Janey doesn't have that.  She is not aware of the world of items out there she could want.  At times I've taken her to a toy store, and offered to get her a toy.  She doesn't get that.  She doesn't see things and think "If only I could have that!"  She is free from that kind of wanting.

In a second, I would reverse all this if I could.  I would give Janey the painful, regular life most of us lead.  It's worth it---I know that.  But I can't reverse it, and so, at times, I do think that there are compensations.  Maybe I have to think that, to keep from despair.  But be that as it may, I think of a life without worry, without coveting, without teasing or exclusion, without politics.  It's hard for me to picture, but it's Janey's life, for better or worse.

Splash Park

I took Janey this afternoon to a splash park near us, a really nicely done one that used to be a wading pool and now has lots of fountain type things to cool off in. My friend Maryellen got us to go---she is very good at helping out with Janey and encouraging me to try things with her. It went pretty well. Janey was quite happy there. She seemed to like seeing all the kids, and she didn't mind the water. I think if we hadn't worked to get her in the water, she would have mostly walked circles around the edges, waving her arms around, but with a little encouragement she went into the water areas. It's interesting how other kids react to her. Kids her age or younger seem to have no clue she isn't totally mainstream. A boy ran up to her and tagged her and said "You're it!" and a girl brought over a Toy Story Pez and tried repeatedly to show it to Janey. Janey pretty much ignores them, but they don't seem to notice or mind---maybe a non-interested kid is less threatening if you are a little shy or something. Older kids seem to see there is something odd about her, but I haven't yet seen one making fun of her---I hope I never do, but that's too much to hope. Adults almost always now seem to know either that she is autistic or that something is odd about her. She gets some stares---mostly when she is yelling with anger or with happiness, or just really getting into circling and flapping. I don't mind the stares as much as I thought I would before I had a child like her. She's who she is, and usually I am concentrating so much on making sure she's okay that I don't have a lot of time to worry about it. She did a cute thing at the park---for about 15 minutes, she put her thumb in the "thumbs up" position to show she liked being there. The crying today was limited to the morning scream. I will have to see how things are tomorrow with Tony at work. She has no sense of work or why he should sometimes be home and sometimes not. I think that must be scary---the boys are sometimes here and sometimes not, as is Tony. It's why I don't go many places---I need her to have someone she knows will pretty much always be around.