xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Sometimes autism makes my heart hurt

Saturday, August 6, 2011

Sometimes autism makes my heart hurt

I'm a firm believer in letting my kids, both of them, be who they are. Oftentimes that can come in direct conflict with how you're technically supposed to be raising a child with autism, which is to force him out of his comfort zone often enough to get him used to the social situations that he would normally want to avoid.

I'm not really comfortable with that, to be honest, and sometimes I think I'm "doing him wrong" by not doing this kind of thing more often, but it just goes against my every parental instinct. If he doesn't want to socialize, I'm not going to make him. I'm not sure how this will work out for him in the long run, but for now I know it's what he prefers.

This means, however, that when we're all hanging out at home, it's usually hubs, Child 2 and myself in the TV room, doing family stuff or whatever it is that we do, and Child 1 is in another room, drawing or looking at train videos or looking at a book or something. Occasionally he will wander into the room (more like pass by us on one of his stim laps) and we will ask, beg, plead, bribe, cajole.... for him to stay and hang out with us and do what we're doing, and he will always say no, and then run/jump/flap out of the room and back to what he was doing.

It makes me sad. I mean, I don't feel rejected by him, I don't think he doesn't love us or want to be in our family, I just know that he likes to do his own thing and hanging out with us is not his thing. I can't make him stay in the room with us, and I don't even try (especially if a bribe of chocolate doesn't even work), but... man I wish he would. Not just to stay in the room because he's being forced to, I wish he wanted to stay. I wish the four of us can hang out like a family the way the three of us do. I don't mean that I wish my child was different or a different person, I just mean that sometimes I feel really sad because autism makes him run away from us and I just want so much for him to stay.



Comments (49)

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This does help, actually, thanks Bridget. What are your thoughts on the whole "forcing him out of his comfort zone" thing? Do you recommend it?
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This is a wonderful perspective. My husband feels connected to the conversation from the other room, too, & we butt heads sometimes about how he should come be included. He says he feels included already. Funny how hearing it from an outside person makes it sink in.
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Thank you for sharing this. Your honesty is heartbreakingly refreshing...
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Sometimes your writing & autism both make my heart hurt.

Nothing constructive to add, so I'm just sending love. (The ladylike kind.)
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I'm right there with ya both. Try it. You don't know till you try it. So much opposition and distress over just trying things certainly tries my patience. *sigh*
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Oh, I completely understand this. All of it.
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I understand what you are saying. Tho my son is 6 verbal but not in questions and conversation if that means anything. He always wants to be around my wife and I both, but I have to ask for an "I love you daddy". I know he does. It's just he's my only child and well I have had thoughts and dreams for one day being a father.
((())) Bobby was like that as a child and it's still his preference. We get around all three kids' tendency to isolate themselves by finding something we can do together that fits their interests or do in the same room, even if it's five different people doing five different things. It took a long time, but it's worth the effort and the patience. :-) Even when it means you're subjecting yourself to yu-gi-oh or beetle-borg or pokemon or anime or any one of the other special interests.
1 reply · active 709 weeks ago
Well I've already been forced by the NT kid to watch the Phineas and Ferb movie three times in one day, how much worse can it get? ;)
See, I get this from Ted. The only difference is that I DO take it personally. I realize I shouldn't, logically, but when your son turns to you at bedtime and tells you that he doesn't want you to hug him, it hurts. Or when he won't sit by me and cuddle, or let me kiss him - EVER - it slices me up. I get very little love reciprocated from him. And it's hard because I love the hell out of that boy.

*sigh*

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2 replies · active 709 weeks ago
I started telling him that, too. I kinda feel bad, like I am pushing myself on him. IDK. I just want him to love me, damn it! And act like it a little more often than the extremely rare moments that I do get! Is that too much to ask? Well, I guess it is with the whole autism thing and all. *sniff*
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Ive always admired people who enjoy their own company.
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1 reply · active 709 weeks ago
I love that perspective!
Ah, I can see how that would be tough to deal with. Ultimately, I think you are one hell of a mom for not forcing him to do something that he is not comfortable with.

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that makes my heart hurt for you
What happens when you go and hang out with him? Also, I've always wondered what an autistic kid would do if you started stemming right along with him? Like what if you, your husband and kid 1 would start arm flapping and hoping around the room when he started doing all that?
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2 replies · active 709 weeks ago
If we try to join in with whatever he's doing, he'll usually tell us to go away because he wants to be alone. It might work if we're just in the same room but not trying to interact, though.
I wonder if it's not so much that stim laps bring him into the room as it is that seeing his family still wants him around and is connected to him is part of his stimming construct. You might say that having you around communicating your love with no expectation of normal reciprocity (which he finds difficult) is the best stim there is. As an aspie, I often wonder if my husband finds my company to be enough and I have always liked reading in the same room where he is watching a sports event. I know you crave more from your son, I expect he would like to be able to give you more feedback but that's the nature of his impairment (social reciprocity), isn't it? When you try and include him, even if he doesn't seem to be responding, I believe it warms his heart.
I'm sorry Jill. This sounds tough. Maybe it's not because of laps, but because he wants to stop by and say hello.
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As an adult autism who is raising two very different aspies, I can offer a some perspective here. It's not about you. Really. I need my alone time the same way that most NTs need to socialize. I've always had that need, and it doesn't mean that I don't love the people in my life. I just physically need the time alone to stim and decompress. As for forcing socialization, I also struggle with it as a parent. At home I don't force my son to interact all the time, because I know that for me it would not have been all that beneficial. I knew my family and how to interact with them. I needed to enjoy my time at home because it was one place free from social stress. Socializing with strangers and other kids is a necessary evil. I recommend small doses though. It really is stressful.
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This post made my heart hurt. What an honest, heartbreaking post. Bravo to you for loving HIM...for admitting that you sometimes wish that you could have what you need from him, but putting his own needs ahead of yours. I taught kids with autism, and I'm not sure how I feel about the whole "pushing him out of his comfort zone" thing. I'm ambivalent about it...sometimes I think that we should just accept and rejoice in the "differentness" of all kids and spend less time trying to make them all the same.
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my daughter is 9 and aspie & she spend as much time as she can by herself, living in her head, as she calls it. she seems perfectly happy and content and creative when she's alone, but i'd love to spend more time with her.
she was also always hesitant to allow us to snuggle or kiss her. i told her that i understand her desire to be un-touched, but i also needed her to understand my desire for physical affection. so i said i'd hug her less than i wanted to, but she had to hug me more than she wanted to. since then, due to her being able to be logical about things, she even volunteers hugs now. it's awesome!
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Are you really "supposed" to force autistic kids out of their comfort zones?

I hate that.

My parents did it to me constantly, even not knowing I was autistic. Every single time hurt more than it helped. Every single instance, I still remember with a huge amount of resentment. I'm not talking about things like requiring that the family eats together, or normal family functions that just have to be done, but specifically being forced or coerced into something for the sake of forcing me to get used to it. Forcing me into something was never, ever, what helped.

So I love you a lot for this post.
3 replies · active 709 weeks ago
Actually. I don't know. Are you?

When Child 1 was first diagnosed I listened to 2 adult autistics speak, Temple Grandin and Kamran Nazeer, and they both said that they had parents or caregivers who forced them to do things outside of their comfort zone and that was a big factor in how "high functioning" (I know we hate that term but I don't know what else to call it) they are today. So... I figured.... that's what I should be doing.

Right? Or... wrong? You tell me?
I guess it just depends on the kid. I guess there are some who do thrive on it. I wish I knew how to tell the difference between who will and who won't. For me it just meant that there was no safe place in the world. Like all kids, I guess, we don't all respond well to the same things.

I'm always torn up because a lot of the things that I know made me more "high functioning" are things that I really don't believe kids should be put through deliberately...there were a lot of circumstances that made me become more capable, and also more angry, volatile, distrustful and lonely. But being forced into something never made me better at it.

I did a lot of driving myself out of my comfort zones, and I have a lot of gratitude for the people who supported me instead of second-guessing me in those things.

Anyway, I don't know if this helps to hear...I have two good apartment-mates, and a lot of times I feel better just having them in the apartment, even if I don't want to interact. There are times when I want to be truly alone, but I actually concluded that I should never really live alone; I need people close by...even when I don't want to be in the same room. One roommate took a long trip to Europe last year; it was great for a few weeks to have the place all to myself...but then I wanted her to come back. I think it's likely that your son knows he wants you around, even if not in an obvious way.
"Being forced into something never made me better at it."

That is ENORMOUSLY helpful. You have no idea. Thank you. So much.
Sigh, Jill, I'm right there with you. We go downstairs to watch movies and he will sit behind us playing on the computer making mazes....it breaks my heart as well. I will go sit next to him and just watch what he's doing, just to let him know I'm near. I hate this part of Autism.
I can identify with your feelings. My older son is like that. Now that he's 13 it's a little easier because he has a love for technology. We can share more time together.
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Ow...that does hurt. Just from my brief time spent reading your posts, I get the sense that your home is a happy place filled with love that must be comforting and so nurturing. He clearly gets what he needs, and I hope there comes to be increasingly more little windows of sparkle where you get more together time.
That's how I am. I NEED time to myself every so often. Otherwise I start morphing into Mommy Dearest. Even before we had kids. I was just always like that. My boys - totally the opposite. I'll loan one to you. They constantly want to be with us, annoy us, annoy each other, cuddle, hang out, be loud, be in your space, etc.
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I, too, admire your willingness to post this and be so honest. Makes me think you're one rockin' mom.

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how hard for everyone involved.
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Sweetness, I know the feeling, feelings, all of it. You made me chuckle at stim laps, thats a good one. Always follow your parental intuition. It is your most important asset.
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Thank you for posting this. I feel this way so often and I'm glad to know someone else does, too.
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Oh yeah, I totally understand this feeling. And even though I don't force, I keep trying, asking - hoping one day he'll say yes. Who know...he's surprised me before. Maybe yours will too.
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Thanks, Jill. Every night I tell my boy I love him and hope he'll someday reciprocate. I know he feels it though, and I know yours does, too.
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I'm sad for you. I was sharing this with my Mom and she said he sounds just like a typical teenager. I've got no experience with either (teenagers or autism) but I hope that sharing it with us makes it just a tad easier for you.
While this makes my heart hurt for you, it was beautiful in a way you expressed it. I have no experience with autism, but know that my mom says the same thing about me (and I'm 30 now.) I've always done my own thing and preferred my own company (or that of a select few) and she's occasionally expressed similar sentiments to your own. It's not that I don't appreciate the love, it's just that I show it in a different way. I'm not as demonstrative, but she knows just as you know. You're there if he wants to join you ;)
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I think accepting our kids for who they are - without trying to change them - is one of the HARDEST things about parenting. Especially when who they are makes us hurt. Oh, how I feel your pain. But I also think there's no better gift we give our kids than our acceptance. You're doing great, Mama.
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I love this post.
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Tracy (@calormom)'s avatar

Tracy (@calormom) · 709 weeks ago

I know I'm late to this discussion but it's the first time I had a moment to read it. It makes my heart hurt too because I agree with you. I wish that my son wanted to engage more but I definitely respect his space and alone time. Although it sometimes makes me feel like I'm a bad mom and ignoring him or something.
I also agree with you about not forcing him out of his comfort zones. We will try sometimes, but if it is visibly making him upset and will lead to meltdown, why the hell would I want to continue.

Thanks for the post! For all the times you make me laugh, I love seeing the softer side of you too.

xoxoxo
Yeah, I get where you're coming from on this one.

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