Comments on: Creating a Support Network http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/ Ethics, Disability Rights, and Reports from Life on the Spectrum Fri, 03 Feb 2012 16:32:50 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Ben http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64179 Ben Thu, 06 Aug 2009 03:54:42 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64179 Jennifer - i don't feel a precise division yet between me and the person i've been trying to be for all these years. the line is still a bit blurry, but i find new things out every day. i'min the middle of trying to sort through my motivations for wanting certain things for myself. the easiest cut off point so far has been: which behaviours have i been working on perfecting for more than five years? how good am i at them? these are the ones i start targeting for demolition :) and i find i have that much more energy and time. reading this blog has been a big help. Jennifer – i don’t feel a precise division yet between me and the person i’ve been trying to be for all these years. the line is still a bit blurry, but i find new things out every day. i’min the middle of trying to sort through my motivations for wanting certain things for myself. the easiest cut off point so far has been: which behaviours have i been working on perfecting for more than five years? how good am i at them? these are the ones i start targeting for demolition :)
and i find i have that much more energy and time. reading this blog has been a big help.

]]> By: Diane http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64171 Diane Wed, 05 Aug 2009 22:35:16 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64171 Rachel, I admire how carefully and thoughtfully you have sorted out your needs and how you have mapped out a plan for addressing them. I think it's very wise of you to come up with strategies for getting done what needs to be done in ways that make your life easier. A suggestion about the food shopping? You might check around to see if stores in your area offer online shopping. In my area, Safeway offers online shopping so I can shop at my computer and have the order delivered. I started using it when I broke my knee and couldn't drive for a bit, but I've continued to use it from time to time because it is such a time-saver. It could work wonders for you in terms of avoiding a difficult or unpleasant shopping experience. If stores in your area do not offer that option, you maybe able to develop a master grocery-shopping checklist, including the brands of stuff you prefer, and then hire someone to shop for you from your list. At any rate, good for you and Bob for looking at the specifics of your needs and working together to sort through them. You seem to work very well together as a team! Rachel, I admire how carefully and thoughtfully you have sorted out your needs and how you have mapped out a plan for addressing them. I think it’s very wise of you to come up with strategies for getting done what needs to be done in ways that make your life easier.

A suggestion about the food shopping? You might check around to see if stores in your area offer online shopping. In my area, Safeway offers online shopping so I can shop at my computer and have the order delivered. I started using it when I broke my knee and couldn’t drive for a bit, but I’ve continued to use it from time to time because it is such a time-saver. It could work wonders for you in terms of avoiding a difficult or unpleasant shopping experience. If stores in your area do not offer that option, you maybe able to develop a master grocery-shopping checklist, including the brands of stuff you prefer, and then hire someone to shop for you from your list.

At any rate, good for you and Bob for looking at the specifics of your needs and working together to sort through them. You seem to work very well together as a team!

]]> By: Rachel http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64169 Rachel Wed, 05 Aug 2009 21:41:01 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64169 Meeting someone who loved me for who I am allowed me to start relaxing and looking at myself clearly. Bob has always said that all he wants is for me to become the person I'm meant to be. He even said it in the wedding vows he wrote and spoke to me at our wedding. And every time I've ever felt insecure and asked whether I was "screwing things up," he's always said that the only way for me to screw things up is to stop being myself. Being an Aspie, I took him at his word. And now, here I am. Switching from Aspie to NT? For me, it's not like switching gears. It's like jumping a huge chasm, panicking about falling in, and then, when by some miracle I don't fall in, panicking about getting back. I'd say that pretty much sums up most of my life. Meeting someone who loved me for who I am allowed me to start relaxing and looking at myself clearly. Bob has always said that all he wants is for me to become the person I’m meant to be. He even said it in the wedding vows he wrote and spoke to me at our wedding. And every time I’ve ever felt insecure and asked whether I was “screwing things up,” he’s always said that the only way for me to screw things up is to stop being myself. Being an Aspie, I took him at his word. And now, here I am.

Switching from Aspie to NT? For me, it’s not like switching gears. It’s like jumping a huge chasm, panicking about falling in, and then, when by some miracle I don’t fall in, panicking about getting back. I’d say that pretty much sums up most of my life.

]]> By: Jennifer Gardner http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64167 Jennifer Gardner Wed, 05 Aug 2009 19:21:34 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64167 Ben- I have heard your words from my husbands mouth. =) A question to you all . . Do you think that taking the mask off is the problem? Maybe the significant others are the problem because we "allow" you to be yourself. We let you be who you are without judgement. . . Typing the above just led me to think of something worth pondering. My husband says that Aspies sometimes have trouble switching gears. If the environment is loud & crazy and suddenly gets quiet, he has trouble calming down and vice versa. I wonder if the trouble you have is switching from Aspie to "NT". Like switching gears? I'm not real sure how to form the question. I find this subject matter so fascinating that I tend to pepper people with questions. I want to know so I can learn and you guys are the best feedback!!! Ben- I have heard your words from my husbands mouth. =)

A question to you all . .
Do you think that taking the mask off is the problem? Maybe the significant others are the problem because we “allow” you to be yourself. We let you be who you are without judgement. . .
Typing the above just led me to think of something worth pondering. My husband says that Aspies sometimes have trouble switching gears. If the environment is loud & crazy and suddenly gets quiet, he has trouble calming down and vice versa. I wonder if the trouble you have is switching from Aspie to “NT”. Like switching gears? I’m not real sure how to form the question. I find this subject matter so fascinating that I tend to pepper people with questions. I want to know so I can learn and you guys are the best feedback!!!

]]> By: Ben http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64166 Ben Wed, 05 Aug 2009 18:42:56 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64166 "I know that things don’t always (often?) work out as planned, but I would have liked to have given Bob a pass on this one." - Rachel i feel the same way some days. it's not like i knew what things would be like a few years down the road, but then, i felt like i needed to keep pretending to be just like regular folks, and that kept me pretty busy. like you've mentioned before, it's only because of my relationship that i began to take off my NT mask for any length of time, and have the time and energy to look at different ways of living. now, i can't go back. “I know that things don’t always (often?) work out as planned, but I would have liked to have given Bob a pass on this one.” – Rachel

i feel the same way some days. it’s not like i knew what things would be like a few years down the road, but then, i felt like i needed to keep pretending to be just like regular folks, and that kept me pretty busy. like you’ve mentioned before, it’s only because of my relationship that i began to take off my NT mask for any length of time, and have the time and energy to look at different ways of living. now, i can’t go back.

]]> By: Rachel http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64161 Rachel Wed, 05 Aug 2009 17:23:42 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64161 I agree that compromise is crucial to any relationship. The question is: How far do I compromise on behalf of the relationship without compromising my self and my integrity? As far as the present travel situation goes, I am on my own for three days every other week because Bob must see his dad. From my point of view, their visits in NYC are a moral necessity, and while it's difficult on me, I actively want Bob and his dad to have this time together. So, we make sure that there is plenty of food in the house, and I do the best I can. For the rest of the time, I need Bob within driving distance, because I feel like I'm treading water, and a person treading water can't make a wide range of compromises. My arms and legs are busy just keeping my head from going under. Once we get some support set up around me (and figure out more ways I can adapt to the outside world and expand the range of what I can do), I'm hoping that I'll feel more like someone with my feet on the ground. With more support, I can make more compromises on behalf of our relationship without compromising my health or completely setting aside who I am. I've been in relationships in which I've done both, and they didn't work out happily for anyone involved. I so don't want to go there again. When I entered into my relationship with Bob, I never imagined him becoming any kind of caretaker for me---in fact, he had been one of the caretakers during his late wife's illness, and I never, ever wanted him to go back to that role. I was figuring that he'd already done his part, and that I'd take on that role myself as Bob got older. He seems sad about what's happening, but basically okay with it; that's his nature. As for myself, I'm angry as hell about it; that's MY nature. ;-) This isn't the deal I made with the universe, but as the Yiddish saying goes, "If you want to give G-d a laugh, tell Him your plans." I know that things don't always (often?) work out as planned, but I would have liked to have given Bob a pass on this one. I agree that compromise is crucial to any relationship. The question is: How far do I compromise on behalf of the relationship without compromising my self and my integrity? As far as the present travel situation goes, I am on my own for three days every other week because Bob must see his dad. From my point of view, their visits in NYC are a moral necessity, and while it’s difficult on me, I actively want Bob and his dad to have this time together. So, we make sure that there is plenty of food in the house, and I do the best I can.

For the rest of the time, I need Bob within driving distance, because I feel like I’m treading water, and a person treading water can’t make a wide range of compromises. My arms and legs are busy just keeping my head from going under. Once we get some support set up around me (and figure out more ways I can adapt to the outside world and expand the range of what I can do), I’m hoping that I’ll feel more like someone with my feet on the ground. With more support, I can make more compromises on behalf of our relationship without compromising my health or completely setting aside who I am. I’ve been in relationships in which I’ve done both, and they didn’t work out happily for anyone involved. I so don’t want to go there again.

When I entered into my relationship with Bob, I never imagined him becoming any kind of caretaker for me—in fact, he had been one of the caretakers during his late wife’s illness, and I never, ever wanted him to go back to that role. I was figuring that he’d already done his part, and that I’d take on that role myself as Bob got older. He seems sad about what’s happening, but basically okay with it; that’s his nature. As for myself, I’m angry as hell about it; that’s MY nature. ;-)

This isn’t the deal I made with the universe, but as the Yiddish saying goes, “If you want to give G-d a laugh, tell Him your plans.” I know that things don’t always (often?) work out as planned, but I would have liked to have given Bob a pass on this one.

]]> By: John Dale Lyons http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64159 John Dale Lyons Wed, 05 Aug 2009 16:06:25 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64159 Although I am not as impaired (for lack of a better word) than some folks here, I do have limitations. It's hard for my loved ones to accept it; not out of meanness, but because they can't fathom how something they can manage is so overwhelming for me. Still, I try to push the envelope and do more. Best of luck with your coping skills, Rachel. I'm always in your corner. Although I am not as impaired (for lack of a better word) than some folks here, I do have limitations. It’s hard for my loved ones to accept it; not out of meanness, but because they can’t fathom how something they can manage is so overwhelming for me. Still, I try to push the envelope and do more. Best of luck with your coping skills, Rachel. I’m always in your corner.

]]> By: Ben http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64156 Ben Wed, 05 Aug 2009 14:35:07 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64156 i agree wholeheartedly with Saja's point that some forms of compromise are important for me, despite certain limiting factors of my neurology. there are things i can get better at, that don't cause me stress, after i've been doing them a certain time, and being able to do this fills me with pleasure. i want more understanding for my particular way of needing things done, and need to be able to do the same for my partner. it's just as hard for him to wrap his brain around AS things as it is for me to wrap my brain around NT things. at least in the context of a single relationship, it can be an level playing field (with work). outside the house, however..... i agree wholeheartedly with Saja’s point that some forms of compromise are important for me, despite certain limiting factors of my neurology. there are things i can get better at, that don’t cause me stress, after i’ve been doing them a certain time, and being able to do this fills me with pleasure. i want more understanding for my particular way of needing things done, and need to be able to do the same for my partner. it’s just as hard for him to wrap his brain around AS things as it is for me to wrap my brain around NT things. at least in the context of a single relationship, it can be an level playing field (with work). outside the house, however…..

]]> By: Saja http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64144 Saja Wed, 05 Aug 2009 10:21:47 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64144 Jennifer, I really like getting your NT perspective. Thank you for sharing it so honestly. One of the things I worry very much about is how my husband is holding up under all my autistic fragility and his ever-longer list of things he manages because I can't. I often ask him if he feels like he's going to crack or burn out. He says no....but then, I've never admitted I was going to crash and burn until I did. Unwilling to say "no" to reasonable requests until my brain just shut me down. I hope he truly is doing okay under his heavy load, and that if he isn't, he'll tell me honestly. I think there is always a certain amount of compromise, by which I mean I will always sometimes say "yes" when my neurology wants me to say "no." Neither of us can always have things ideally; and even though sometimes I'll have to tolerate things that are difficult for me, I think that's how it should be. That we work together for a good life together, which by definition, I think, means sometimes not getting one's way. Jennifer, I really like getting your NT perspective. Thank you for sharing it so honestly.

One of the things I worry very much about is how my husband is holding up under all my autistic fragility and his ever-longer list of things he manages because I can’t. I often ask him if he feels like he’s going to crack or burn out. He says no….but then, I’ve never admitted I was going to crash and burn until I did. Unwilling to say “no” to reasonable requests until my brain just shut me down. I hope he truly is doing okay under his heavy load, and that if he isn’t, he’ll tell me honestly.

I think there is always a certain amount of compromise, by which I mean I will always sometimes say “yes” when my neurology wants me to say “no.” Neither of us can always have things ideally; and even though sometimes I’ll have to tolerate things that are difficult for me, I think that’s how it should be. That we work together for a good life together, which by definition, I think, means sometimes not getting one’s way.

]]> By: Jennifer Gardner http://www.journeyswithautism.com/2009/08/03/creating-a-support-network/comment-page-1/#comment-64124 Jennifer Gardner Tue, 04 Aug 2009 20:11:34 +0000 http://www.aspergerjourneys.com/?p=3226#comment-64124 I've been keeping to myself for your last few posts. This one struck me. Again, your thoughts come in very close to the same time we have an issue at home. In this instance, this is an NT perspective. I think of myself as being far from selfish but sometime I am selfish. I have taken care of my husband since we married 10 years ago. Most of the care has been financial up until we quit smoking and we noticed something "off". Now, I am the financial support & emotional support. After reading your post, I really feel for Bob. I also know disappointment. Arranging our lives around Jason is common. Everything has to be planned to make sure it doesn't have too much of a negative impact upon him. I am even guilty of going overboard and making assumptions that really get him pissed. (He can't stand for me to make assumptions) It takes a lot out of me. The everyday "care" he requires or is required wears me out to the point that I mentally draw a line in the sand. Some of it isn't "care". It is being involved in his world. The inconsistencies with life, the patterns, the negativity, the lists, the rule breakers. I want to stomp my feet and throw a tantrum. I finally decided to quit sugar coating some of it. Some days I want him to know he is difficult. I like it when he goes on an overnight hiking trip or I travel for business. I like the silence and the time to feel like me again. I always tell him "Please let me have the opportunity to miss you". I need those reminders sometimes. I need the confirmation of why I get up every morning & why I make sacrifices. Thankfully, the Aspie brain allows him to see my argument as valid rather than as a desire for him to go away forever. He understands that I need the break. With that said, Rachel, I really hope that you can come to a mutual satisfactory way for Bob to continue his trips. I wish for you to have peace while he is away and I wish for him to have the "opportunity to miss you". P.S. (For the sake of my husband reading this) I must note that I am no walk in the park to put up with either but in this instance I am not referring to the hell I put him through =) I’ve been keeping to myself for your last few posts. This one struck me. Again, your thoughts come in very close to the same time we have an issue at home. In this instance, this is an NT perspective.
I think of myself as being far from selfish but sometime I am selfish. I have taken care of my husband since we married 10 years ago. Most of the care has been financial up until we quit smoking and we noticed something “off”. Now, I am the financial support & emotional support. After reading your post, I really feel for Bob. I also know disappointment. Arranging our lives around Jason is common. Everything has to be planned to make sure it doesn’t have too much of a negative impact upon him. I am even guilty of going overboard and making assumptions that really get him pissed. (He can’t stand for me to make assumptions)
It takes a lot out of me. The everyday “care” he requires or is required wears me out to the point that I mentally draw a line in the sand. Some of it isn’t “care”. It is being involved in his world. The inconsistencies with life, the patterns, the negativity, the lists, the rule breakers. I want to stomp my feet and throw a tantrum. I finally decided to quit sugar coating some of it. Some days I want him to know he is difficult.
I like it when he goes on an overnight hiking trip or I travel for business. I like the silence and the time to feel like me again. I always tell him “Please let me have the opportunity to miss you”. I need those reminders sometimes. I need the confirmation of why I get up every morning & why I make sacrifices. Thankfully, the Aspie brain allows him to see my argument as valid rather than as a desire for him to go away forever. He understands that I need the break.
With that said, Rachel, I really hope that you can come to a mutual satisfactory way for Bob to continue his trips. I wish for you to have peace while he is away and I wish for him to have the “opportunity to miss you”.
P.S. (For the sake of my husband reading this) I must note that I am no walk in the park to put up with either but in this instance I am not referring to the hell I put him through =)

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