Friday, September 16, 2011

Who Picks up the Slack for Me?

A dear friend of mine asked me to post this for her as she felt unable to risk posting it herself. Can any of you relate? Can you help? Or even just comment to let her know someone else in this crazy world we live in, gets it.

Image from visualizeus

I recently saw John Elder Robison (author of ‘Look me in the Eyes’ and ‘Be Different’) speak. He was brilliant and inspiring. At the end of the discussion they had a question time and there was a lady in the front row who asked, “I am a wife of someone with Aspergers and my question to you is how does your wife stay married to you?” 

This sounds incredibly shocking doesn’t it? And for a moment I gasped and then I realised that John took no offence to it what so ever. In fact he answered that she did not stay married to him, but he found another wife who did. He answered that for their marriage (the second and current marriage) his wife has a high emotional capacity where his is low and he has the high logic capacity and hers is not as high, so they are a good match. Also that she does not expect things of him that he cannot give, she knows his limitations and they have open communication, she doesn’t get cross at him for things that he ‘should’ know. He expressed regret that he couldn’t help this lady more in his answer and mentioned that he is asked that question often from women all over the world.

I sat there all inspired about how awesome Aspergers is and thought to myself, “yep, that’s so true. Don’t expect things, you need to be specific and ask for them”. Feeling all smug I drove home.

I have a son who was diagnosed with Aspergers nearly 3 years ago... he is 8 now. My husband as a child was diagnosed with ADD but since receiving my sons diagnosis we have figured that perhaps that was wrong and we strongly suspect that he too has Aspergers. I think that the best way to describe the ways in which his ASD (or ADD officially) affect him is that he expects things to be done ‘his’ way. He thinks something and says something and expects that instantly you will understand and agree. There is no grey area, if I have not heard properly or the question is not said explicitly enough for me to understand and I ask for clarification I am met with exasperation! Things are meant to be done a certain way, to do them other ways is met with great frustration.

Rules... not written in stone nor a poster on the wall but rules written in the fabric of his life which we need to comply with. Internal focus, incredibly intrinsic focus. I will stand and listen to a discussion for 10 minutes about something in particular that has happened or of interest...then I start talking and at times he just walks off, or he interrupts or changes the subject. So I stopped talking. Then I am in the wrong for I do not share, I do not discuss things with him.

Questions are asked in statements which come across at times incredibly harshly.”Didn’t you get milk today?” instead of “Did you get milk?” When I point out the different ways these two sentences make me feel I am questioned as to what the difference is? Why should he ask if I got milk when it is obvious I didn’t because there isn’t any there! My thought to that is (it used to be the answer but then the argument following and exasperation at my not understanding his logic and point of view is not worth the time) ‘why even make the statement then if you can see that there is no milk!’

His mother is from the old school of doing absolutely everything for her family. Everything. I admire the loveliness of her home and the way in which she brought them up securely and comfortably with beautiful food on the table each night. I do not admire the fact that her son had developed a preconceived notion that that is the way things should be done for him for the rest of his life (a notion which she told me I had an obligation to do for her son... we haven’t talked much since that day). We married young and despite my voicing the fact that I did not grow up in a house where the woman did everything and therefore would expect him to do things around the house etc, my words obviously fell on deaf ears. Or did not fit his preconceived rules about the role of a wife and mother.

Standing in the kitchen he will say, “just look at this place! It is such a bloody mess!” and then he will turn on his heels and walk out of the room. His plate has in the last year been transported from the table to the bench after dinner (after much nagging to change the before behaviour of simply leaving it there and walking away). I could push and nag to get dishes done, but more times than not the banging and crashing of the plates and cutlery as he does it either smashes one (and it is never his doing, always a cause of the dish or the way I had stacked them) as he expresses his disgust at doing them in much the same way my 6 year old expresses his disgust at packing up his toys! It is not worth the hassle.

The world owes him much. I owe him much and it is my job to make sure that all of our worlds just keep on flowing and ebbing along nice and smoothly. I do all the sports runs and therapy and school runs... I also work. Anything to do with the kids... I do. I am not bitter about this, I love my kids more than anything else and would do anything for them. I love my husband too... but I am not sure how much longer I can be all of their alls.

You see I am diagnosed with depression and have recently had an increase in my meds which has caused a decrease in my coping skills! Clearly there is something in me reacting to them and I am seeing my therapist to discuss it today, hopefully if I change meds I will regain some control... control... which has at times over the last few weeks been completely void in my life. I cannot cope with the day to day. I get through the things that need to be done and then am too exhausted to deal with the things that should be done and well need to be done but if no one is coming over then they can wait.

Dishes, washing, sweeping, vacuuming... housework.

My husband knows of my depression and downward spiral and yet other than trying very hard to regulate himself so that he doesn’t say too many negative things to me he has done little else.

This morning I went to pay for my daughters swimming program through school. The note had been lost under the car seat and we had not paid the deposit for it. She cannot go as a result of this, it is too late. I got to the car and drove off past the school before the tears began to fall. By the time I pulled in the driveway at home I was sobbing. My toddler asked me if I needed to wipe my face and I answered "yes I do honey." My friend is coming here in about an hour and a half to watch my toddler as I go to the therapist and my house is a complete disgrace. I stood at the bench, barely seeing through my tears and feeling like a complete and utter failure and the thought popped into my head...

Who picks up the slack for me when my world is completely falling apart?

That smug version of me, agreeing with John Elder Robison that day and the advice he gave to the wife of a husband with Aspergers, is currently living somewhere else.
Right here, right now I am her best friend, her carbon copy and I am wondering... how do I keep doing this? How do I keep taking the constant negativity, managing meltdowns from all the children and my partner, always trying to do and be everything because it is easier doing that than putting up with the arguments or discussions about it? To leave him feels like a betrayal as he cannot help the way he behaves... but then I think of the therapy I am doing with our son and wonder why it is that he is unwilling to try? If his son can then why can’t he? But to leave feels just as hard as to stay.

Are you married to someone with Aspergers? Are you that lady on that day wondering, how do I stay married in this situation? Do you understand?

on behalf of a friend.