It seems like a simple question. When a group of young adult guys with autism are living independently but require additional daily supports …… who is in charge?
It definitely is not such a simple question.
Everyone involved has a say, but who makes the final decisions? The parents. The support staff. The support staff’s agency. The bossy big sister roommate (that would be me). The landlord (uh, that’s me too). Society. The guys?
Everyone wants to be in charge of his/her own life. Everyone has that right. OK great. Let’s say we try that.
Let’s stay up until 430AM playing this video game and then sleep all day. Oh wait, it’s 9AM and my support person is here. I don’t feel like doing anything, could you just go home? What, you depend on the money, this is your job? Yeah but I’m YOUR BOSS and I say go home.
You want to help me find a job? I don’t want a job. I get enough money from social security and food stamps to pay rent and eat.
No, I haven’t showered. No, I haven’t done the dishes. No, I haven’t cleaned the bathroom. Yes, I guess the garbage is overflowing.
I don’t feel like cleaning up, you are my staff so please take me to the mall.
I’ll just eat ramen, chicken flavored only. And popcorn. And drink Dr Pepper. Yeah, I gained 75 pounds this year.
I feel terrible. I’m going back to bed.
Hmmm… this definitely is not going to fly with the parents. Be back home with Mom in no time.
OK …let’s try the parents. ‘You have to go to bed by ten, are you brushing your teeth? wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night, and here, use this new quilt on your bed it matches the furniture better.’ ‘Oh, and I am calling your support staff to tell them that they have to teach you to cook chicken cordon bleu.’
…What ABOUT the support staff? (or the ‘bossy big sister’ housemate?)… ‘You have to go to bed by ten, brush your teeth, wear that green shirt with those jeans, throw that old sweatshirt away, make your bed, stop playing with those toys you’re an adult now, you don’t need dessert every night, and you have to learn to cook chicken cordon bleu.’
ugh, you sound just like my mother….
Wait, I thought I was going to live independently?
Maybe it should go something like this……
‘My parents spent a lot of time and money helping me to get set up in my own home, I should make an effort to be responsible and considerate. I’ll put some time in every day to learn how to take care of my home, but then I’d like my support person to take me to the mall. I hired my support staff, so it is my responsibility to be available (and awake) during the hours they are scheduled. But on Friday nights, I am going to stay up most of the night playing video games, and I just might sleep all day on Saturdays.’
‘I hate taking showers because I don’t like to be wet. But nobody wants to be near me when I stink ,and I do want friends. I live in a house with other people, it’s not fair to make them put up with a smelly house. But I refuse to shower every day, three times a week is enough’.
‘I am NOT making my bed, I’m keeping the old sweatshirt, and I am having dessert every night … but only after I eat a real dinner, because I do feel better when I eat real food. Sometimes I am going to eat dessert first. And there is no way I am using that ugly quilt from my mother’.
It’s all about compromise. And when the rewards are an independent life and new friends, it feels worth it in a very short time (give it a year, that’s not so long).
Mom, however, may never get over the quilt thing.
As for the landlord, she gets to insist that the garbage gets removed. She cannot tell you what time to go to bed.
And society? the rules say that you have to drive on the right side of the road in the U.S., and you cannot walk down the street in your underwear. You don’t get to change that just because you have autism.
and these are the things that we talk about during dinnertime around here….
Just for the record….. It took a year or so, but here at Juniper Hill we are resigned to the fact that we just can’t stay up all night and still function with our staff the next day, so we make an effort to get some sleep. We like the attention we get now that we’ve lost some weight because of a better diet. And we’ll shower a few times a week just so the ‘bossy big sister’ will let us in her van to go grocery shopping.
‘More Rules than Jesus’ (today’s Juniper Hills quote of the day) …Last night we were talking about the new ‘house rule’ that the TV, computer and video games have to be off during the week when it is before 2PM, (which is the time when the support staff all leave), to be considerate of others who are working around the house. So Jose, one of our devout Christians, says…’ I wish I lived with Jesus, he doesn’t have so many rules’.
Hmmmmm…Not sure if the Pope would agree!
and guess what? it was ANDY’s idea to learn how to make chicken cordon bleu (‘you know’, he says, ‘that chicken with the cheese and ham rolled up inside’) and he picked up the phone and called his mom for the recipe. IT WAS AWESOME.