I'm not really cut out for this
Aug. 8th, 2011 06:01 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
femkes_folliesThen again, is anybody really "cut out" for parenting special needs children?
Though there are people who adopt autistic children. I can't imagine, as it's hard enough to cope with when they're MINE and I had them and loved them long before the diagnosis. Though, on second thought, maybe it's easier if you KNOW what you're getting - rather than leaving dreams and expectations and ambitions to die along the way.
There are certain things about this that I'm really not good at:
Advocating inherently conflicts with my natural instincts to not impose on people. I really hate to ask people to do anything for me just 'cuz. Possibly I carry this to extremes. I don't leave both of my children with my own mother, unless one of them is sleeping and then not for more than an hour or so. What right do I have to ask anybody else to put on their track shoes and chase my children?
But helping them to DO things requires asking people to DO things for them. If I want them to have access to a dance class, I'm going to have to bite the bullet and ASK someone to do something special for them. You have no idea how difficult I find this. I was brought up Calvinist, which has a strong tendency to instill a "We are Worms!!" mentality - an assumption that I don't deserve even what I have, let alone do I have the right to ask for more.
Now, I have a couple of dear friends who will occasionally wrestle me to the ground and force something on me. And even then, I'm probably not that gracious about accepting it. Asking total strangers to make exceptions for and put themselves out on account of MY children... is like pulling teeth.
I am not good at differentiating sometimes between Autism and sheer misbehavior. Worse, I cringe because if I'm in public - even if I can tell the difference, I just assume other people can't. And one unkind remark is enough to keep me traumatized for weeks. It was, in fact, my encounter with "Sir Hare-lip" (as John has dubbed him) who really brought it home to me just how unwelcome my children and I are in the SCA. At that, I'm never entirely sure myself (or only rarely) when they need to be "corrected" (his word, not mine), and when they need to be catered to.
I don't have any deep desire to get involved with programming for parents with Autistic kids. I don't really get energized or find strength or comfort in it - it depresses me. Sometimes even "uplifting" stories about ASD people make me cry - and not in a good way. I can't help but mentally compare my children to the person being so spot-lighted, and wonder if they'll ever be able to operate at that level. Or wonder if it's my fault for not pushing/providing supports/making sure they work as hard as they can that they aren't doing the same things.
I really don't want to medicate them without need. And then I worry that maybe they could do more if they were medicated. But if they can't tell me how it makes them feel....
Hmmmm... I seem to need a substantial vacation in the Land of Not Coping. :-(
Though there are people who adopt autistic children. I can't imagine, as it's hard enough to cope with when they're MINE and I had them and loved them long before the diagnosis. Though, on second thought, maybe it's easier if you KNOW what you're getting - rather than leaving dreams and expectations and ambitions to die along the way.
There are certain things about this that I'm really not good at:
Advocating inherently conflicts with my natural instincts to not impose on people. I really hate to ask people to do anything for me just 'cuz. Possibly I carry this to extremes. I don't leave both of my children with my own mother, unless one of them is sleeping and then not for more than an hour or so. What right do I have to ask anybody else to put on their track shoes and chase my children?
But helping them to DO things requires asking people to DO things for them. If I want them to have access to a dance class, I'm going to have to bite the bullet and ASK someone to do something special for them. You have no idea how difficult I find this. I was brought up Calvinist, which has a strong tendency to instill a "We are Worms!!" mentality - an assumption that I don't deserve even what I have, let alone do I have the right to ask for more.
Now, I have a couple of dear friends who will occasionally wrestle me to the ground and force something on me. And even then, I'm probably not that gracious about accepting it. Asking total strangers to make exceptions for and put themselves out on account of MY children... is like pulling teeth.
I am not good at differentiating sometimes between Autism and sheer misbehavior. Worse, I cringe because if I'm in public - even if I can tell the difference, I just assume other people can't. And one unkind remark is enough to keep me traumatized for weeks. It was, in fact, my encounter with "Sir Hare-lip" (as John has dubbed him) who really brought it home to me just how unwelcome my children and I are in the SCA. At that, I'm never entirely sure myself (or only rarely) when they need to be "corrected" (his word, not mine), and when they need to be catered to.
I don't have any deep desire to get involved with programming for parents with Autistic kids. I don't really get energized or find strength or comfort in it - it depresses me. Sometimes even "uplifting" stories about ASD people make me cry - and not in a good way. I can't help but mentally compare my children to the person being so spot-lighted, and wonder if they'll ever be able to operate at that level. Or wonder if it's my fault for not pushing/providing supports/making sure they work as hard as they can that they aren't doing the same things.
I really don't want to medicate them without need. And then I worry that maybe they could do more if they were medicated. But if they can't tell me how it makes them feel....
Hmmmm... I seem to need a substantial vacation in the Land of Not Coping. :-(
(no subject)
Date: 2011-08-09 12:56 am (UTC)I can't even begin to imagine.
(no subject)
Date: 2011-08-09 02:04 am (UTC)Maybe tomorrow someone will offer to help out and I'll feel better about the whole business.
It happens.
(no subject)
Date: 2011-08-09 02:30 am (UTC)Just like you don't know what their language skills are, you said that they figure stuff out real quick. You don't know what effect any of this is having on them. You don't know what they're learning from you by example and from the things that you do. Shoot, you may never know if this life, but you will know one day.
I'm kinda having a similar discussion with the grand-child of a cousin. God gave you those girls for a reason -- or maybe He gave them *you* Point is, He's in charge -- just like He's in charge of my job. Some times I feel abandoned here in south Georgia, but I do know to the very depths of my soul that He brought me here. Don't have a clue why; don't have a clue when I'm getting out of here.
I observed Lent with a Lutheran friend of mine this year. I've been going to church with her. I've always been interested in The Liturgy -- and part of that is borne of the SCA and what Church was In Period (tm). But EVERY. SINGLE. SERMON. that Pastor Steffans brought during Lent and during Holy Week spoke to ME. Every last one. I've learned more than a few things in the 6-8 months "as a Lutheran."
And I also know (that whole personal experience thing) that even *knowing* something doesn't necessarily make it easier to deal with. Knowing that God put me here doesn't make the feeling of exile go away any more than knowing that the panic isn't real makes it go away. But there's some underlying sense of purpose -- I don't know -- that's not the right phrase. Most days it's ok; some days it's very NOT ok.
I know that our circumstances are different. That "disquiet" or whatever is radically different in our two cases; but, in some weird metaphysical sense, I think I do kinda understand what you mean and what you're dealing with.
(no subject)
Date: 2011-08-09 02:47 am (UTC)O.o
To which my response was, "Possibly it's not about ME. What do you suppose she was put here to teach you?"
Which was probably unChristian of me.
I have come to understand that we've been kept where WE are because it's the best place we could be for the sake of the girls. And we didn't know that when they were smaller - and we were fighting to relocate.
As to the rest - it is what it is. Where I tend to struggle is in even asking for help. I have no right to expect to have this lifted from our lives. Lots of people go through worse. It's just a matter of putting one foot in front of the other for now, and making the best decisions I can with the information I have. Even knowing that they may turn out to be the wrong ones, with the benefit of hindsight. Such is life.
I will say even church is difficult. The girls aren't welcome there either - not really. They don't fit into the Sunday School program. They can't sit through a service. And while I think the staff would be horrified if we told them outright that we think so....I also don't think they'd change anything either. There would be verbal reassurances - and there it would end.
There IS a congregation that is putting together a residential program for Autistic people, and intending to run church services in conjunction. We might try that. But it IS a 30 minute drive each way - which makes getting the girls up and dressed and there on time a challenge.
(no subject)
Date: 2011-08-09 03:01 am (UTC)Hindsight sucks. I think it's one of Satan's most effective devices. :-(
And at least your church won't say it. I told you Tom was active. He's the big reason that we changed churches when he was 5. Daddy went to pick him up one Wednesday Night (Tom went home with them so John and I could stay for choir). The *girl* (and I do emphasize *girl*) that was in charge of that particular preschool room, met him at the door, and told them not to bring him back. And NOBODY at that church would do a damn thing. The pastor said it wasn't his "business" or some such shit. No apologies, no nothing.
I knew my kid wasn't perfect; but he didn't act like that for anybody else. My mother-in-law took him to her place of business; he stayed with the woman across the street 3 days a week. She thought he was cute, never established her authority, and when it became very clear that things were out of control, her solution was to tell a 5 year old child that he wasn't welcome at church. IMO, there's a special place in hell (ok, maybe purgatory) for her. We found a place; you'll find a place.