7.10.2012

Autism: It's Nobody's Fault When It's Hard

Iz is a wonderful big sister to Leo. This is her at last week's family reunion, letting Leo know that the group photos won't take that long, explaining that if he could just sit for a minute, then he can go back to the playground even sooner, and that he's being awesome and patient.

I don't have a photo of her and Leo from yesterday, when she got into a teen defiance spiral while we were in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. I wouldn't want a picture of that.

Afterward, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. (That it is never acceptable to yell the way she was yelling is another, puberty-driven issue.)

Accommodation is part of being part of an autism family. It's just what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled.

I told Iz and Mali that it's OK to discuss situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism (e.g., they are welcome to chastise him if he steals a piece of their pizza).

Leo is always doing his best, he just got through a week of chaotic family gatherings, his sisters know he's a capable kid. He also needs us to support him as best we can, and avoid avoidable crises. He deserves nothing less.

Side note: I've been blogging for 9 years as of yesterday. And this is my 2,500th post. Holy hell.

14 comments:

  1. My older kids get so frustrated with Kaden, Especially Mahala. It breaks my heart, because she gets aggravated and you can tell in her voice and actions. She can have all the patience in the world one day and then the next she will be upset because he is eating with not the best manners or going on and on about math facts in the loudest voice possible. I try to talk to her and give her praise where I can. But, I think it;s at the point we need a counselor for her before too much resentment sets in. Sorry for rambling!! :)

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  2. The emotional sensitivity resonates with me. It's particularly horrible when you recognise the intensity of the emotion, but are unable to identify the emotion.

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  3. This is important to talk about, Shannon. I appreciate you sharing. My other child is younger than my son on the spectrum, and makes a lot of accomodations. For instance, the young teens tease each other with lots of sarcasm. I was listening to 4 young teens talk to each other and realized how much of it is like a foreign language to my older son. When I want he/them to watch their language I say "quotable". A LOT.

    Another dynamic I've seen in my family is that I need to remember that my other kids are kids, too. They don't always understand the whys and wherefores. And they themselves deserve accomodation, too, because it's about working together as a family.

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  4. @Manic Mom, depending on where you live there may be SibShops or something similar for siblings of kids with special needs. But I'd want to talk to the coordinator first, to ensure that my girls aren't going to be taught negative attitudes about their brother.

    @Rory, thanks as always for your insight. And I think that's exactly it with Leo.

    @Dixie, exactly. The girls need accommodation, too. They just don't see it that way, not always. But they are good kids.

    And I have to note here that Iz made herself a human shield between Mali and Leo when Leo had another aggressive meltdown in the car yesterday, before I could stop the car and vault between Leo and Mali myself. (This meltdown of unclear origin, so frustrating for Leo and us.) Iz was trying to protect both of her siblings. She is an exceptional kid.

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  5. Anonymous11:08 AM

    "Iz was trying to protect both of her siblings. She is an exceptional kid."

    Always difficult, to decide how much to expect of the exceptional kid. I once told mine, when she was 9 or so, to "stop acting like a child." Everyone stared at me, and I realized my error. Now we have the same disconnect when my incredibly balanced, responsible, mature kid melts down into a bundle of teen-tween hormones.

    zb

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  6. ...and I just got Leo's cold and totally understand why he would not be feeling like himself on Monday & Tuesday. It is a particularly icky cold. Aggressiveness explained.

    zb, those teen-tween hormones are in the air at our house, too.

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  7. Jo Sparkle8:16 AM

    this post is hard for me to read because I see both sides of it so clearly. I grew up having to make concessions for my brother and his differences, and I still have to do this even as an adult. I wasn't until I was in my late 20s that I remember my parents saying that they understood it was hard for me, too, instead of just the "he can't help it but you can" line.

    I wonder often what they could have said or done differently to make me feel less ... responsible (?) for my brother's behaviours. less helpless? I don't know.

    How do I know when to tell friends (and boyfriends) they're taking advantage and I won't accept them behaving as if they don't respect me when I have to allow this sort of thing from my brother and not blink because "he can't help it" "he really does love [me]", etc? It's been a struggle, and am not sure I've found the right balance between tolerance and intolerance.

    As a rational adult I'm sure other people make room for me and my shortcomings, but as a sister of someone with emotional/social problems it feels like I have to be "on" all the time - and I get tired.

    Anyhow, I don't have an answer, but I just wanted to speak up for Iz's point of view as I experienced it. Of course, my brother didn't have a diagnosis growing up and the one he has now doesn't (I don't think) address everything so I didn't have the support she does.

    But maybe she needs to hear that it's no one's fault and it is also not hers.

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  8. My wife and I have said many times that we are fortunate in some ways. Because both of our twin sons are on the spectrum.

    We're not sure how much more we'd have to do if we had one boy with autism and one neurotypical. Things would have been so different.

    Thanks for sharing your experiences and progress. Iz sounds amazing!

    - Marc Zimmerman
    The Social Express

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  9. I feel like some resentment on Iz and Mali's part is totally normal and OK. (that's very different than blaming Leo, or treating him badly). Its not the same thing, but I was mentally ill for awhile--it wasn't my fault exactly (although parts of it were, which is why its an imperfect analogy) and my sister definitely resents me for it. And she should. Resentment is one thing, not being able to have a "normal" childhood because of something out of your control and grieving for that is normal. That doesnt mean, of course, that Leo did something wrong, or that allowances aren't made for behavior and circumstances in ALL families--just that I think some of that is normal.

    And Iz does sound awesome.

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  10. Sibling resentment is part of the deal, in a family. I'm trying to help all three kids understand when it's fair to be resentful, and when it's not. Iz is a very sensitive kid, I think she gets a lot of this intuitively.

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  11. It amazes me how my younger son knows so instinctively how to accommodate his brother (and also how to turn that on a dime and instigate him). My older son doesn't quite get it yet, but he's learning. There is no resentment, it is just our normal, our family. The boys don't seem to know that it should be any other way. I don't know if it because they both have disabilities? Even so, I do find it's hard when the dynamics of one child controls the functioning of the entire family and continue to struggle with finding the happy place between accommodation and chaos/dysfunction. Lucky to have a PA now to hopefully help us/me figure this part out. :)

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  12. Teenagers (and pre-teens) can be intense about anything in any family, that's the deal with teenagers.
    The great thing is depending on how you react, they can either learn to be resilient with great compassion and coping skills that serve them well in life. Or they can grow up thinking they need to be cushioned from everything with no ability to manage when things don't go their way. I think you are ticking Box A with your reaction.
    BTW: it is believed that Theory of Mind develops earlier in kids with ASD with interested siblings. A lot of developmental goals are easier when they are being pushed/coaxed/supported/modeled by a kind sister or bro. I have seen this with several of my friend's kids.
    Congratulations on your blog birthday! You are 2 years senior to me. (I wasted a lot of time in discussion boards)
    xx

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  13. I am having a very personal reaction to this post so please forgive me. No wait, that's exactly the message I was taught growing up as a girl. Never upset other people with your emotions. And while I am well past the surging hormones and radical brain restructuring of puberty, I still have within me the sensitive girl who might have been having a meltdown in the car. I was the sensitive girl no one knew was autistic (not even me). I had no one to tell me that it wasn't my fault when things got hard, but I sure as hell got told that if I upset someone else, I'd get hit. Please tell Iz that I feel her frustration. (And no, I'm not blaming Leo. I'm just not blaming Iz either.) There. If I've upset anyone so be it. I still don't deserve to be hit.

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    Replies
    1. You don't deserve to be hit. And I'll make sure Iz reads what you wrote.

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Respectful disagreement encouraged.

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