Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.

Dennis the Menace was a slacker

I'm compelled to write about Janey's afternoon yesterday, partly just because I dearly hope someday I'll be able to look back on it and laugh, and find it hard to believe it even happened. Now is too soon. About fifty years too soon, I think.

As I picked Janey up from school yesterday, I got a report on her day from her special ed teacher. I love hearing these reports, as her teacher is so wonderful and also has a great sense of humor. It's great hearing about Janey's day, even when, as it was yesterday, it's a mixed report. Janey didn't feel like sharing the iPad, and slapped her friend she was supposed to be sharing with. She didn't feel like concentrating on her work, and had to stay in for part of recess, which made her very, very angry. I could just picture her, and we both were feeling happy that Janey understood what was happening and reacted with the reaction a lot of first graders would have. She also did a lot of good talking, and said a complete long sentence about wanting to make a ladybug in speech therapy.

On the way home, I talked to her about her day, as I try to do every day, although it's a one sided conversation. I went over how we don't slap people, how I was glad she was talking a lot, all that. In the rear view mirror I could see Janey looked a bit surprised I knew about the less great parts of her day---another age appropriate reaction I remember well from the boys!

Then...we got home. And started what can only be called the HOUR FROM HELL.

First, I tried to have us play outside a bit before going in. The weather has been great lately. Usually, Janey loves to be outside, but for some reason, she wanted to go in. I insisted we stay outside for a few minutes. As I was admiring my daffodills, with Janey feet away, she decided to take off her clothes and play in dirt. Well played, Janey---she figured out that would get her inside fast. So we went in, and I started a bath for her. She entertained herself while the water was running by slamming down the toilet seat repeatedly. I got her into the bath, and she quick as a wink grabbed some shampoo and poured it almost all into the water, to make bubbles. I moved all the shampoo and conditioner out of reach, and got the bath done.

Then, I thought we'd play a little iPad, and practice sharing. But Janey thought instead she'd grab a bottle of soda and practice pouring into a small glass. As I rushed over, the glass overflowed and Janey delightedly poured soda all over the floor. A huge sticky mess ensured. I put her in time out (which I doubted does a bit of good, but she'll usually stay there and it gives me time to clean up). Luckily she didn't get much on herself, so I decided against a second bath for the moment.

Then---the fateful phone call. As she was in time out, I looked for the phone (anyone who calls us knows we can never find the phones, a result of having to always be where Janey is, and walking around the house while we talk). I blame myself, really, for thinking I deserved the luxury of talking to whoever might be calling. At that point I would have chatted with a bill collector for some adult conversation. I yelled over to Freddy to keep an eye on Janey, and he said he would. We both must have let down our guard for a minute, thinking she was still sitting in time out. But she wasn't. When Freddy got up to check on her, literally just a minute later, I heard a scream from him "JANEY! JANEY! I CAN'T BELIEVE THIS!" I ran to the kitchen, where she was, and where she had decided to open a new jar of peanut butter, which I had left in her reach thinking she couldn't get it open (I barely can open jars lately), or open the inner seal, both of which she had done, and then had quickly grabbed a handful or two of the stuff, completely covered her chest and face and hair with it, and was getting started on spreading it over the kitchen. At that fateful moment, Tony walked in, coming home from work, to a scene I'm sure is burnt in his mind. At first, he thought an even more upsetting "diaper incident" had occured. I can see why. I led Janey to the bathtub, trying my darnest to keep her from touching anything. I gave her a second bath. And learned something new---you can't wash off peanut butter very easily. It takes scrubbing. It doesn't come out of hair until you've shampooed it about three times. It was a long bath, made longer by tears, not Janey's (she who can cry for an afternoon over nothing was not shedding a single tear) but mine. Tony and Freddy worked on cleaning the kitchen.

And that, my friends, was an hour in my life.

I'm trying to analyze it. Why? I can't think this was all just impulse, although I might be wrong. I think Janey was acting out, at least to some extent. She was probably annoyed I talked to her about school, annoyed to be home (she loves school) and also had had a bit of a thinking breakthrough---I can be naughty on purpose. It makes all kinds of wild things happen.

I have no idea where to go from here. Except little things---never assume she can't open soda or peanut butter. Although we literally try to ALWAYS have someone watching her (not just casually, but literally with their eyes on her), she's getting quicker, and we don't have that nice 30 second window any more.

How is this going to be possible? Should we stop sleeping, as there's always that possibility she will wake up when we are asleep? What the hell are we going to do? Where do we go from here?