08 August 2008

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.

15 comments:

  1. I can see that you are just a eensey weensey bit frustrated.

    I would just like to ask, is there maybe a way you can write something that you would like to offer as a help to people? Maybe something that would provide tips or pieces of info that you think non-autistic people or people who don't know anything about autism should know about autistics that would help them?

    I know you don't have all the answers but you do have more experience with autistic children.

    Just trying to think of a positive spin : \

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  2. Yeah, I'm pretty frustrated. Most of it has nothing to do with anyone else. Was up half the night crying that I have really messed up my kids if this is how they turned out.

    Howcome??? J will NOT even imitate sounds, and he's supposed to be speaking three-word sentences and going places without thwacking his head on the concrete. Where did I go wrong?

    I suppose I wish I had some good advice for his carers. I wish I could sit back and just not believe in autism or mental illness. LA LA LA and then everyone else would have to deal with stuff and not me.

    *sniff*

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  3. Three word sentences? Really? With the exception of Meg and Captain who started talking and have never shut up, my kids have not done that. Luc only spot one syllable words until he was 2.5 almost three. Belgee is 17 months now and he doesn't say anything really, except Mama and bayartai (Mongolian for bye). If they were supposed to be speaking multiple words then they were quite delayed. But, you know, I rarely compare my kids to calendars.

    By the way, if you are ever in California, you should come to my church. We have several special needs kids, one who is autistic, who are accomodated quite well in the children's ministry. Places like that do exist.

    Love you, Mrs. C. I'm praying you get a much needed refreshing for your spirit.

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  4. Whenever I leave Jess with people I have a little booklet with directions on feeding her, how to entertain her, sleep schedule, etc. If the carers are so sporatic then maybe something like that would work so you don't have to give them a 30 minute schpeel on how parenting works with J.

    Hang in there...you're doing a great job!

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  5. You always have a way of making me feel your posts. I have had a similar situation to what J had. I was told that the girl caring for the nursery would not watch Monkette anymore because she ran in front of a car even though she screamed at her to stop. Um ok not realizing physical danger is a common part of her diagnosis not to mention why did you have kids around cars in the first place. When I complained to the preachers wife I was told that she agreed with the nursery worker. Just like you it makes me not want to go. I know I am not offering you any advice but just wanted to say that you are free to email me anytime you want to talk.

    I dont think anyone who does not deal with this kind of situation daily will truly understand the seriousness of it.

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  6. PS Not sure if you have long distance on your phone but I would be more than happy to give you my phone number for when you need to hear a live voice when talking about something. You just have to put up with my accent.

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  7. Oh Mrs C.. here is a great big (((hug))). I think that you are doing a great job parenting your children..
    I am absolutely stunned that someone slapped J's hand and I congratulate you on keeping your cool. I would have been FURIOUS.I would have been incoherent with anger. It is against the law here to smack a child in your care and rightly so.
    If an adult smacks an adult that is classed as assault.So why is it ok for a giant adult to smack a small child Hmmmph..
    Gosh, J is still only a baby.
    (((hugs)))

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  8. I am not sure I would regained Christian composure if someone said that they smacked my 20 month old babies hand either. I think I would have calmed down after their head was plucked bald, but I am probably not a good influence on you with these types of remarks. *snort*
    My now 16 almost 17 year old has a learning disability. Not as severe as Autism but still I can relate. With a LD there is no pills like ADD or ADHD. Nothing. It is just how you are and the only thing you can do is learn to work around it the best you can. He was diagnosed in the 3rd grade and he is entering in his Junior year of HS right now. What a battle it has been to advocate for him. So I feel for you.
    So what do you do? You pray. You thank God for giving you this wonderfully and PERFECTLY made child. Because God makes no accidents and this child was made this way just as you were intended to this special child's parent. And then you just push on. One day after another.
    Someone once told me the world isn't going to bend to Christian (my son) and his LD. They are right, they aren't. But that's ok, I'm not raising a child to be OF THIS WORLD but to be IN THIS WORLD. So if this sin filled world doesn't bend to him, that's ok....God still does. :)
    I believe in my heart that God has a plan for my son just as He has a plan for your children. Hang in there, the best is yet to come!
    God Bless,
    Michele

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  9. Thanks!

    I'm not really mad... more... sad. Thinking there might not be a place for us *anywhere* and etc.

    But I have emailed the pastor about it and I think he'll just deal with it so hopefully I don't have to confront EVERY teacher for EVERY child individually, yk? If I were to call on the phone in real life, I'd probably say HI and how are you and stuff like that and never get 'round to the problem at hand.

    It's actually a terrible character flaw I feel the Lord is showing me. I'll be all upset and tell my friends about it instead of confronting someone. Sigh. It's difficult to do this.

    And I will make something for J maybe. I need to think about it. I think I'll come back in a couple weeks. But I don't know how to help because obviously if I can't fix the autism, I can't fix the "this child doesn't mind/fit in" situation. Perhaps I'm being too bleak.

    But FYI on the carer, I was upset, but she DID tell ME what happened, so that leads me to believe she genuinely thought she did nothing wrong and that spank was a usual consequence in her mind... It isn't something to flip out near as badly about as some of the things we'd been through before with Elf locked up, etc. but I find myself retreating more and more from social situations.

    I almost feel like... what's the point? Someone's going to wind up sad or disappointed.

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  10. From someone totally impartial (i.e.: me!), you have other children who are perfectly fine, whose language and behaviour are perfectly acceptable, so I don't think you can blame yourself for J's idiosyncracies (spelling?). J will speak when J is good and ready. If J has never been smacked before, it's no wonder he went psycho. What an insult! How rude of that person to smack your child! Grrr. She's lucky you didn't slap her!!
    I barely go to church anymore. There are a lot of reasons why. And I refuse to 'shop around' until I find one that suits me. It's a shame your church is not meeting your needs.
    I'm not being rude or disrespectful when I say, have you considered homechurching, much in the same way as you homeschool? You should not have to resort to that, but perhaps for the meantime that could be one solution to the 'problem' of UnChristian Christians!!
    From the little I know of you, I would say you are a fantastic, loving, giving, selfless mum. Please don't blame yourself for the shortcomings of others.

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  11. Tracey, I *have* considered staying home and doing church there. But, see, we used to do DAILY Bible readings. Did them for TEN years. Got out of the habit. See how badly I stink??

    But really, it's mostly a matter of my homeschooled boys. Unfortunately, the stereotype about homeschool kids being socialized improperly is TRUE for my sons. For various reasons, obviously, but church is the only time my children get to see other children their age.

    It's a problem I know we have, but don't quite know where we got where we are. Perhaps our history makes us VERY SUSPICIOUS of other people and our friendships are affected.

    In all honesty, in the 11 years we've lived here, D has only had a friend over ONCE. And that was because some computer thing in his house needed fixing and his work friend knew how to do it.

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  12. You are amazing, Mrs. C. I wish I was able to keep my composure like you did. There was one day when I took NBear to church (she was 5) by myself, and a woman came up to her, pointed a finger AT HER FACE and said something like "You need to stop running!" Trust me, the kid was not running. Long story short...I walked up to her at the end of mass, and told her how I felt. Of course, I was near-screaming, and she happened to be seated next to three visiting nuns. Oh well. I cried in my car after that. (thanks for the inspiration for my next post!)

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  13. LOL... Not to be overly spiritual, but I keep thinking Jesus is listening to our conversations, reading our blogs, etc. Kinda puts a damper on my fully expressing myself, ya know??

    Actually, I'm really honest-to-goodness not upset at HER. More that that's something she thought was ok, is upsetting. That our church doesn't have a standard in dealing with "other people's kids" needs to be dealt with, and soon. Whether I go back or not, it needs to be addressed. I've written to my pastor and actually given him a link to my blog.

    I actually DON'T want anyone figuring out who this is because in the end it is NOT about HER. I don't want to fight with her and I LIKE HER. I want her to feel welcome minding J again because I think she cares for him but doesn't understand... maybe some of that is my fault.

    It's about setting some sort of standard, preferrably in writing, on what the expectations are. Because obviously she and I expected different things. Were it *my* child and I gave him a spank it's one thing in my opinion, and another when I touch someone else's kid when he isn't in danger or NEEDING help in the bathroom.

    Complicating matters is the fact that many of my children are special-needs and can't be expected to be up to standard in the same way as other children.

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  14. I do not think you have messed up your kids at all. It is clear to anyone that you are ten times the mother most of us could ever hope to be!

    Perhaps there is a reason your kids are the way they are--a reason known only to God, but someday which will be clear to you.

    I just want to say you are doing a WONDERFUL job of parenting, and I just can't see how you could be doing any better! Your kids are REALLY LUCKY to have you for their mom.

    Eileen
    Dedicated Elementary Teacher Overseas (in the Middle East)
    elementaryteacher.wordpress.com

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  15. I am catching up on blogs and just wrote a comment on Disabled Christianity that essentially said that unless the church embraces a view of sin that embraces brain differences our kids with atypical neurological development will be excluded.

    Then, yesterday, I met with a psycohologist whose job it was to approve Marissa for a case manager through the county... and she recommended, at taxpayer expense, exactly what I had hoped the church would provide for my child. A 1:1 person to act as her external brain and provide direct supervision of her while she was at Youth Group. It is too late for this now because Marissa burned one too many bridges.

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Non-troll comments always welcome! :)