Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.