The days and weeks and months and years

I'm feeling low tonight.   Janey has been fairly good.  She had a great week after restarting the medication, a honeymoon period we often see with something new with her.  Now, she is still fairly happy, but the screams and repetitive requests are sneaking back.  But it's more than right now.  It's how the days and weeks and months and years have been, and will be.

I'm thinking a lot lately about life getting away from me, about all the things I can't do.  I've been wanting to get up to Maine very much, where my parents live and where I grew up.  I want to see my parents and friends there, and just to be in coastal Maine in the summer---something that is one of the best things life on this planet has to offer.  But I can't.  I can barely go to the next room a lot of times.  Any time off Tony might have had for this summer was eaten up by Janey being in the hospital, and he has to work and I have to be here for Janey.  Taking her with me---I tried that last summer, and it didn't go well.  It's the opposite of a rest.  Summer school is a great respite for the time she's there, but then the day is over and again, I am basically trapped.  As is Tony.  There are so few places we can take Janey.  We don't get invited places much.  I can understand why.  If you host Janey once, that's probably about all you can take.  She isn't safe around small kids, she will get bored and scream after a short visit, she'll open your fridge and take things out, she'll find dangerous stuff you thought you had hidden well, she'll wet through her clothes onto your rugs or furniture---all things she's done.  And so we have become, over the years, more and more isolated.  I was thinking of summers past, with the boys.  We visited people a lot, we went to the town pool, we went to the beach, we went into the city.  We did a lot.  And now---we do nothing.

Most of the time, I do okay with doing nothing.  I'm pretty good at keeping myself entertained.  I have my garden, I have books, I have my kids and my husband, I have the Wild World of the Web, I have music, crafts, TV...I'm okay.  But lately, as I face down being 50 in the spring, I think about the things I can't do.  My parents are getting older, and I worry about them.  My nephew Zeben lives on the other side on the country, and I haven't seen him in years.  I have friends I haven't seen in years either, that aren't even that far away.  I am living a life that is smaller and smaller.

Maybe, lately it seems like there's a turn---a turn from thinking "This is how it is right now with Janey.  I can handle this on a temporary basis" to thinking "This is how it is for good.  This is the rest of my life."

This is a self-centered post.  I try not to be that way.  I try to focus on Janey.  But I'm failing at that today.  I'm thinking just about myself.  I would do anything for my children, all of them.  But somehow, I feel like who I am, the me that has the energy to be a good mother, to be creative and proactive and caring, is being chipped away at, by long days at home, long weeks of hoping Janey stays healthy and happy, long years filled with screaming and biting and progress that is so slow that it sometimes goes backwards.

Generally, I have little patience with myself for feeling this way.  There is something in me that tells me "You had kids.  There are no guarantees.  You are her mother, and you are lucky to have her.  You shouldn't go complaining about what life with her entails"   That is true.  But other times, I do a comparison of my life with Janey to the life with the probably 999 out of 1000 other kids, the kids that have friends, can go to camps and lessons and the homes of extended family, the kids that get older mentally, the kids that will someday have a job and maybe a family, the kids that might some day help their parents when the parents get old.  The kids I am lucky enough to have two of.  And in these darker moments, I admit to myself that although being a parent is tough for everyone, it's especially tough for our .1%.

I will get past this mood.  I don't have a choice.  I write about it, as I write about most things, for two reasons.  It helps me to write it out, to work out my feelings---that's the first reason.  The second reason is that I know there are others like me, and I want them to know they aren't alone.  We are out here.  We might never meet in person, for the reasons I talked about here, but it helps to know there are others living this life.

Not a good day

Janey is not enjoying this 3rd snow day and 5th day off in a row from school.  She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs.  This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish.  That is not working.  Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.

I did keep her happy for minutes here and there.  We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted.  She caught on right away, and got lots of hugs and nice words.  Later, we did workbooks.  I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing.  It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them.  Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them.  Janey learns so much from videos, and I figure me doing something live might teach her even more.  It kept us sane for a while, anyway.  I'm pretty good at preschool workbooks, if I do say so myself.

Overall, though, it has been a day of screaming.  At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of.  But there does come a point of just not being able to take it.  Thankfully, I have Tony and I have the boys.  And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.

I feel like a failure after a day like today.  I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort.  Of course, Janey isn't always that way, but it's always a minute away from being that way.  I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.

My 15 minutes are probably almost over.  Tomorrow will be better.

Low Optimism Day

Some days lately I can feel upbeat, but today was not one of them. If you aren't in the mood for a depressed rambling entry, you might want to skip this one.

Janey was home today and it was just such an endless depressing day. She will be back in school tomorrow, but even one day is hard. She spent the day in three ways---begging for videos which she will watch for a minute or two and then cry about or ask for another different one, crying for no reason I can figure out and laughing hysterically for no reason I can figure out. I guess there were a few food requests in there too. I tried to do so many other things. I read to her---the only book she wants lately is Dr. Seuss' ABCs, because she has a computer version of that and the book is just the same. I tried to play blocks with her. I tried to do a workbook page about shapes with her---I KNOW she knows at least circle, but she just completely wouldn't do a thing. I tried just following her lead---floor time, as they like to call it. She just cried and begged for "Kipper, Kipper!" I tried to do dishes with her "helping". She asked for a glass of water and flung it on the ground. I opened peanuts in the shell for her, the only way she likes peanuts now. I did something wrong, and she grabbed all the peanuts and flung them on my bed. I could go on and on. Just mostly picture the background sound---either a crying that never ends or a giggling kind of meaningless laughter that never ends.

And I can't help it---I extrapolate. I picture this day multiplied by a million. I picture her at 20 or 30, when I am older and more tired than I already am, everything the same. That's not fair to her. I hope she will learn, she will grow. I should look forward to the future. But I don't, lately. I am just so tired. I read an article somewhere today that said it's been shown that mothers of autistic kids have the same stress level, as measured by blood hormones, as combat soldiers. I've never been in combat, and that seems a little extreme, but not totally so. You are always on guard. You never know when something is going to go badly wrong. Even when all seems calm, in a second there can be screaming, broken things, a child running off. Even when your child is away, at school, you are waiting for a phone call. It never, ever, ever, ever ends.

Still with me? I did warn you! I'll try to get my energy and hope back soon. But not today.