15 Responses to “Creating a Support Network”

1. 

   DonkeyBuster August 3rd, 2009 at 7:31 pm

   Another wonderful, thought-provoking article. Thank-you, Rachel.

   What a great strategy! Isn’t it wonderful to get a clear view of something that is affecting so many things subliminally and get it out in the open? Where it can be addressed and worked with?

   This is something I’ve been thinking about too. My partner is my support; if she’s gone I’ve got nothing in the way of other friends. I’m feeling slightly better now that I have a wonderful therapist, so there would be that support. But as for help around the place? And someone to play with… go to movies, plays, hikes, discuss a book, rave about my garden… I’ve definitely got to work on that.

   As far as advocates… as I don’t have any close friends outside of my sweetie, I’d have to rely on a lawyer, which is expensive. I have no one to ‘get my back’ as it were, and that really bugs me. I love my sweetie, but she’s no tiger. She’ll do anything to avoid a conflict most of the time. I think hospice programs may have patient advocates. Perhaps one could designate which hospice company?

   To help anyone who would be in that position, there are extensive medical directives which cover many, many contingencies, beyond the basic living will. Some elderly friends of mine had them, and it was pages long with all sorts of hypothetical examples and what you’d like done in that case. It would have been wonderful if my mother had had one when she was dying and I ended up being the one to make medical decisions for her… I had no idea how far she had wanted to go, and though she had a living will, it really doesn’t give the decision maker much help. How long would my mother want to be in a non-responsive state before we withdrew treatment? Did she want everything possible done to preserve her life or a more conservative approach?

   Same with funeral arrangements… we had no idea what she would have desired for that. Were there special things she wanted to go to special people? The big stuff was covered by the will, but was there a charity she would have preferred her clothes to go to? Who should get her cat? She trained bonsai… was there anyone she wanted to have one of her special trees? We had no idea.

2. 

   Saja August 4th, 2009 at 5:51 am

   Rachel, I think it’s great that you and Bob are able to be so honest and fragile and nonperfect with each other. M and I have that too, and I honestly don’t know how people survive relationships that aren’t like that. (I left all of mine.)

   I could tell from Bob’s comment on your “educating kids on the spectrum” post that the reality of living with autism was setting in. I think M is still in the “I’ve known for a long time what you’re like, and things are fine and have been fine for years, so they will continue to be fine” phase. Which, on a very deep, basic level is, of course, true. But the mechanics of daily life are changing and will need to continue changing until we find the balance that keeps me from melting down and feeling like death is the only option. I worry that he will crack under all the added strain, as he takes on more and more things that I suddenly can no longer manage. I think he’s still operating under the assumption that this is temporary until I get recharged, or something like that. But I may be wrong; I am often wrong about how incredibly generous and capable and resilient he is (because would not be able to be those things in the same situation).

   I am still….disappointed? feeling cheated?….by this midlife autistic burnout. I still don’t fully understand why I now can’t do simple things that I did repeatedly for years and years without even thinking they were stressful for me. Of course, that line of thinking ignores the suicidal depression meltdowns I have also repeatedly had, which were my autistic response to all that overexertion. But in the ordinary, everyday moment, it just seems bizarre, and kind of unfair.

3. 

   Dean August 4th, 2009 at 6:53 am

   Hi, first off, please don’t take my message as criticism, I’m just trying to understand your position and how it relates to me. I only realised I had Asperger’s about a year ago, I’m 32. Am I right in assuming most of the things in the list you struggled to do before your diagnosis, but somehow managed to do them? I’m worried that now I’m aware of who I am I might regress into myself if that makes sense?

   1. Housecleaning. – I tend to get behind during workdays but catch up when I put my mind to it

   2. Driving my daughter where she needs to go. – My wife doesn’t drive so I do a lot of driving, especially commuting

   3. Food shopping. – We’ve tended to do a lot of bulk shopping online, but sometimes I’ll have to go to a busy supermarket and don’t enjoy it

   4. Cooking meals. – I have pretty plain bland stuff and am ok with it.

   5. Running outdoor errands. – Usually do this sort of stuff at weekends

   6. Going to doctor, therapy, or hospital appointments. – Usually evenings but rare

   7. Making telephone calls. – usually email if I can or get my wife to do it, but can do it myself if needed

   8. Advocating for myself with the health insurance company, the doctor, the cable repair person, and the rest of humanity. – haven’t had any probs like this so far

   9. Keeping track of the finances for our household and for a small non-profit that we run. – I’m the one in charge of the household bills, most of it is paid automatically by direct debit which helps.

   10. Spending time with friends. – don’t have many to be honest

4. 

   Rachel August 4th, 2009 at 8:33 am

   Hi Dean,

   Thanks for your question. (I didn’t take it as criticism at all.)

   For me, the loss in skills didn’t begin when I got my diagnosis; in other words, I haven’t psyched myself out. I began to notice my loss in skills when I married Bob 6 1/2 years ago. Before that, I took on far too much and drove myself mercilessly. For instance, in my first marriage, I was the sole breadwinner in the household, homeschooled while working full-time, drove all over the place, etc. and asked for very little help. I was determined to do nearly everything myself. The idea of slowing down or asking for help was anathema to me.

   I think you have a great advantage in knowing that you’re an Aspie while you’re in your early thirties. It’s apparent from your message that you are aware of your areas of difficulty and have adapted (bulk shopping online, appointments in the evening, etc.). That is something I never did. I just let my ex do the shopping and cooking because I was working full-time and he wasn’t. I never admitted that I had trouble with doing them, so I simply plowed the energy I would have used for those tasks into other things. I never gave myself a break—not ever.

   I think that’s why I’m where I’m at right now. The diagnosis just gave me an explanation that has allowed me to look at myself and understand why I did all those things and why I no longer can. It’s also allowed me to start thinking about adaptive strategies (like wearing a noise-blocking headset) that will enable me to expand the range of what I can do.

5. 

   Ben August 4th, 2009 at 8:34 am

   i’m going through some of the same changes at 39 (which have been happening since my late 20′s, actually), where i just don’t feel like i can do all this, AND keep up my NT mask.
   i’ve been fired from jobs (‘not a team player’ ‘shows disrespect for authority’), quit, and had some doozy depression/anxiety episodes in the last ten years. what this means now is being supported by someone else, which causes its own issues.
   we’re managing to divvy up chores and responsibilities equitably, with me as home-maker, and he as bread-winner. it has now become ‘my’ kitchen

   the landscape always seems to be changing, though, as i realize why certain things aren’t possible, or easy, for me any more. it’s difficult for me to ask for him to take on new responsibilities, on top of everything else.
   strangely enough, my skills on the telephone have made me the go-to one in our relationship when dealing with the cable company, landlord, etc.

   either by fitness or acquire skill, i am a good advocate for myself, and get enough of a feeling of satisfaction running errands and grocery shopping, that these are things i’m happy to do.

6. 

   Jennifer Gardner August 4th, 2009 at 4:11 pm

   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 =)

7. 

   Saja August 5th, 2009 at 6:21 am

   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.

8. 

   Ben August 5th, 2009 at 10:35 am

   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…..

9. 

   John Dale Lyons August 5th, 2009 at 12:06 pm

   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.

10. 

    Rachel August 5th, 2009 at 1:23 pm

    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.

11. 

    Ben August 5th, 2009 at 2:42 pm

    “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.

12. 

    Jennifer Gardner August 5th, 2009 at 3:21 pm

    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!!!

13. 

    Rachel August 5th, 2009 at 5:41 pm

    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.

14. 

    Diane August 5th, 2009 at 6:35 pm

    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!

15. 

    Ben August 5th, 2009 at 11:54 pm

    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.