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Thursday, January 17, 2013

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.


1 out of 64 said...

I'm sorry you're dealing with all this. It's great that you have Tony. Do you have other people you can call & vent or have honest conversation about this? That usually helps me but I'll admit I rarely have people that I feel safe doing that with. Venting is therapeutic. I know I'm a stranger on the internet, but I can very much relate to how you feel (in fact I feel like I can relate to you better than I can to most people) & am here via email or phone anytime. It's unfortunate that this community doesn't give us more support in services or providers, which is all the more reason I believe we need to really stick together & support each other. You & your family are in my thoughts.

mknecht24 said...

It must be in the air. I hit the wall too. Dan was out of town, and things fell apart, including me. That's why I HATE the phrase "I don't know how you do it". I don't know how I (we!) do it. I need a lot more help, or else this ship is sinking fast.

Suzanne said...

I was thinking a ton about that "I don't know how you do it" comment. It's like they are saying, really, "You better keep doing it, because I can't help you and no-one else could either" I think it's a help to people to be able to think that autism mothers (and fathers) are some kind of superhero who can do what other people can't, and of course, we aren't. We are regular people pushed to the limit, and you are completely right---the ship is going to sink at some point without more help. Or at least be a very leaky ship that isn't much good for anything, because you are always having to bail out water and can't do any fishing or anything. Tea Mommy, I would love to talk to you more! Sticking together and supporting each other is a huge part of how we can keep on going another day with all of this, and you are right---I feel a connection to other mothers going through this that is amazing sometimes. No matter what the other parts of our lives are like, this huge part of it is in many ways the same, and so unlike that of parents with the "perfect" kids.