Feeling Included?

On my post on Adam Race being forbidden to go to Mass, anonymous recently wrote in part (click for whole article and comments):

"I do want to say that the information in the blog about Adam is completely one-sided. I know for a fact that the church has offered different choices of how to deal with Adam in mass. They have offered the crying room exclusively to them, they have offered private masses, and yet the mother has refused all of these. It upsets me that a kid has to go through this, but it also upsets me that a mother would put her kid through this. Sitting or restraining Adam in mass is a form of calming him down which means he is under stress. I'm sure the options offered would actually put Adam under less stress due to less people."

I don't think I've excluded the fact that the Races were offered the crying room in the basement and other accomodations in other posts, but if I did, I'll admit those accomodations were offered according to several major news media stories right now. I'll also admit that the well-publicized incident of the young man revving a car in the parking lot could have turned out very badly, though I think that's more the fault of whatever idiot sat his car running in the lot with the keys in the ignition than the church or Adam Race.

I guess, anonymous, when I look at news stories like these, I see a lot of judmentalism from people who DO NOT DEAL with autistics each day. Hey, I'll admit their behaviour can be "bratty," ok? Even dangerous sometimes. But wow. They're people with a genuine disability.

And I think an UNRECOGNIZED side-effect of that is that the parents can become either overly defensive or overly aggressive in their advocacy after a while. They can come off as recluses (and "no wonder the kid's autistic with parents like that!!") or overbearing jerks who don't think anyone else has rights. I think that's just a result of knowing that others really don't give a crap about their kids. If you don't retreat from society, your feelings will be continually hurt by friends or stupid commenters at Safeway. If you don't advocate for your child, the rights of the "crowd" will ALWAYS, ALWAYS win.

I think autistics and their parents are pretty well clear that they're either not welcome or no one is interested enough in their condition to find out a bit about it. School experience shows that as long as the kid is little and the state gives money for the child's "special needs," he'll be accomodated reasonably. No money? Lock him in the closet when he misbehaves. Way to go. Autism is no excuse for bratty behaviour, right?

Church experience has shown that the needs of the many way outweigh the needs of the few. Way. Your kid had better watch himself during service time or Mom is going to be called after the situation has escalated into something out of control. Ironically, parents of autistic children are JUST THE ONES who need the most understanding, compassion and concern, but JUST THE ONES who receive the least.

Maybe I need to stop bringing my children to service so that I don't inconvenience the care providers with their idiosyncracies and need for special attention. Of course, that means I won't be going, either, and when I stop going I don't want to hear the stupid verses about giving up fellowship as some have done. HELLO, several fellowships have given up on our children, or shunted them for being naughty. Who's more spiritual? I suppose my "end" of it would be to work on not harbouring bitter feelings... you know, "they know not what they do" and all that.

But I keep going, God, they know not what they do on purpose because they don't want to take an extra minute to find out. They want theology all neat in a package. "Obey God" must equal being obedient to the teacher at all times, and any deviation from that is not a medical concern even in part. It's ALL sin. Let's just take the attitude of, "I'm not going to buy that there is a such thing as autism," so that we don't have to get into the trenches with parents and fight for the souls of these children. They're damn inconvenient.

Oh, and J? He's a little brat whose mom lets him get away with everything. One of the childcare providers came to me and told me J was going "just nuts." See, she told him to get away from the diaper changer twice, and so the third time she slapped his hand. Then she was surprised that that resulted in a screaming, howling, head-banging and rolling all over fit that no one was able to calm down. I mean, all I did was give him a good pop on the hand!

I was upset, but I just asked her not to ever do that again. (*I'll* handle the physical discipline next time and not like that fer crying out loud! The kid sort of gets it, but he doesn't quite get it like YOU THINK he gets it. He *is* being a bit disobedient, but not as badly as you might think. It's just not quite the same to compare him to his same-age peers.) The ladies taking care of him just literally had their mouths open when I told them maybe I'd have just found something else to do with him. And keep trying till it works. Or, you know, I **don't** know how to make him stop doing things or make him do something sometimes. (Not being perfect and all. Even his therapists aren't pushing for him to make sounds because it sends him into such a tizzy and IS NOT WORTH IT, you know?)

So, like, you just DO NOTHING? they asked. I can tell at this point they're thinking "lack of discipline." Yup.

They asked what to do next time that would fix things and I had no stinkin' idea what to say, so I said nothing. I mean, instead of "redirecting" J two or three times, he might need 20 times, or a distraction, or a snack and drink. Even then it might not work and good luck. AND THAT IS WHY IT IS SO HARD TO PARENT AN AUTISTIC CHILD!! THAT IS WHY I FEEL SO ALL ALONE AND THAT NO ONE GETS IT. THAT IS WHY WE DON'T STAY FOR "FELLOWSHIP" STUFF. BECAUSE I HAVE THREE OF THEM. How do I tell them that? I can tell they just think I'm an overindulgent parent. I can just tell they're not looking at it like I am. Or maybe they don't buy it that J might be autistic.

Or worse, maybe they DO and they're thinking, Jeez, I don't want to deal with this kid anymore because he's too much work!

But the end of the matter is, I didn't feel J was beloved in that moment. I didn't feel supported. I would hate HATE HATE to leave, though. This is quite literally the only time my middle boys get to see friends. J is very hard to take out places, and so is Elf because he can run away. Having two kids under two and a child who runs is NOT a good combo in any circumstance, but if one of your little ones also howls and bangs his head, that's just icing, baby.

I feel very alone. I'm thinking I need to advocate for J somehow because he needs to get out of the house occasionally and see "friends." The little kids there of course want to pet him to make him feel better. Awww... bless them, but it doesn't work. I think the care providers were just following what they thought was standard Christian parenting, which I have to admit I used very effectively on Patrick. But it DOES NOT WORK on kids with autism. You will literally wind up beating them to death or you will halfway give up on the discipline, which of course teaches nothing. There are no easy answers to disciplining a child with autism if the result you want is something called "instant obedience."

I just don't know what to say. I'm not sure what to do or who to talk to. I don't want anyone in trouble, but I don't want to think that next week the same thing could happen again with someone different because parents and volunteers only help out once a month. Somehow dropping the boy off and saying, "HEY! Don't beat my kid! But you can feed him fishie crackers if ya want!" just doesn't seem friendly.