Treading Water

This week, and last week and I project this next week, feel like treading water, like running in place.  Janey and I are getting by, but not going forward, not doing much of anything useful or even that fun.  I feel like I'm somehow just not figuring something out, like I'm wasting time that shouldn't be wasted, but I'm not able to do what it takes to change things.

School starts a week from today.  I must say every year the first day of school feels like a holiday right up there with the big ones. I always liked the first day of school, no matter how I felt about the rest of the year.  It felt like the start of it all, the beginning of something new and big.  I remember how it felt to have my new 5 subject notebooks, each section carefully labeled, to have a clean desk and locker, to see who was in my classes and what new faces there were.  Within a few weeks, always, my desk or locker was a horrible mess, no matter how hard I tried, and the notebook was doodled on and torn up.  But the first day---it felt wide open.

Janey and Goofy, at ToysRUs

Janey will be starting 6th grade.  In a lot of ways, every school year feels the same with Janey.  But 6th grade---that's a big one.  That's middle school.  I have a memory so vivid it's like a movie clip of the first moment of 6th grade.  We moved to what in our town was called The Annex.  It was a school built in 1900, and by the time I went there, in 1976, it had been condemned for at least 10 years.  No-one could go on the 3rd floor at all, and only teachers could use the 2nd floor.  We were on the first floor, 3 classrooms.  There were 3 other classrooms you had to go down a hill outside to get to, a shop and a home ec room and a room called "the community room" which was a standalone classroom.  It was a small town, obviously.  But that moment I walked into The Annex for the first time felt like a huge deal.  Mr. Berry was there, one of the six teachers, and he was pointing and saying "That room for 6th grade, that room for 7th, that for 8th!" and it felt like the start of something getting close to adulthood.

I write about that moment partly to contrast it with Janey's life.  6th grade will be a lot like any other grade for her.  The years don't change much, in terms of what she is working on learning.  She'll go to school until she's 22, and then, probably I would guess to some day program.

Janey at the park, before loose dogs scared her away

I feel more and more like it's up to me to make Janey's life interesting and meaningful, and I feel like I'm not doing a good job.   And as much as I tend to take all blame on myself, I know in this case my job is very, very tough.  If Janey were a typical 12 year old, there would be literally thousands of programs, lessons, camps, enrichments---all open to her and all within the Boston area.  In addition, she would have friends.  She would perhaps be riding the subway to school on her own, if she were going to a school like Freddy did.  I would be part of her life, but it would not all be up to me.  When I think about it much, I can get furious.  Giving Janey a meaningful life is as important as it is to any child, but where in heck does all the money donated to autism organizations go?  Why is there basically NO programs Janey can access?  There are a few programs for autism here and there, but when I look into them, they are for the highest end of the spectrum---not for a child like Janey.

Janey finding the Elmo crayon toy, one she loves so much we've bought it twice

So---I do what I can.  It's not enough.  This week, we did a lot of walks to the corner store.  We went to a big open park, Millennium Park, early in the day so there weren't too many free roaming dogs or little kids.  We left when more dogs arrived.  We went to ToysRUs, and Janey enjoyed looking at toys (it's one of the few stores where touching the merchandise is not a problem) but then she got upset and started toward a little girl with a look I know as "about to lunge" and I grabbed her and left.  We watched TV and took showers.  It was not a week that was interesting and meaningful.

I will stop for now, as I feel like I'm entering the ranting and rambling stage of writing.  I'll stop and try to think of something to do today, try to figure out something that is safe for Janey and those around her, something interesting and meaningful.  Good luck to me.

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.

Dogs

Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.