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Tuesday, February 14, 2017

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

Friday, February 10, 2017

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar
Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

Monday, February 6, 2017


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.