First, let me tell you what Elsie P just did (and she did it yesterday too!). She put my computer in full screen mode, and I couldn't get it out. I had to call Dad, who told me to use Task Manager so I could End Task and then open it and try again. It worked. Silly cat!
Anyway, Mom and I went to see Dr. J (psychiatrist) yesterday. It started off okay, with her asking about my recent... adventures, if you will, and we told her what I'd been up to. She was glad the lithium is working and reminded me that I'll need blood work every 3 months (I already need it for diabetes stuff, so this is no big deal). Then, things got a little sour...
She said she thinks it's time for us to consider a group home. I said that the only options are for people with MR who need a lot more care than I do, and she said, "Well, you're not exactly what I would call 'high functioning,' now more than ever. You should be much higher functioning than you are. I don't know what keeps you from living up to your capabilities." That upset me, because I'm doing the absolute best I can, and now she says it's not enough!
Well, she said, "I think it's time for you to consider moving away from Mom. There are AS/ASD-specific houses in the Philadelphia area, and those would be perfect for you." She told us about the organization. I said that I will not move away. No. Way!
Dr. J thinks the apartment was a mistake, that I'm not ready for it and maybe never will be. Mom says I'm "at a standstill" as far as gaining independence goes and have been for years, so she thinks I've reached my peak.
I get the feeling that Dr. J thinks that the thing holding me back is that I'm lazy. As I told Mom, I'm a lot of things, but rarely am I lazy! And when I am lazy, it's little things... really little things. I'm never lazy with the things that matter.
Dr. J wants me to go back to work. Mom says not yet, but that we'll get a job coach (through the Waiver) and maybe I can get a preschool job at my church, where hopefully I would be accepted more and there would be less stress because of the coach. If not at my church, maybe another church. Anyway, that's my job goal. Less than 10 hours a week right now, for sure. The reason Dr. J wants me to work is that she doesn't want me to sit around too much. She says that volunteering isn't enough, that I need to work. Hopefully a church preschool job would appease her.
So even though it's going against doctor's wishes, I am going to go back to the apartment once the Waiver is finished processing. I'm going to have staff a few times a week, hopefully, and have someone come to take me places once a week, if that works out. I'll go to the library, Starbucks to hang out, go to the shelter to volunteer, help out at church once a week, go to Bible study, and go to church and help with the kids, and I'll go to the study on Wednesday afternoons. Isn't that enough?
I'm still upset that she might think I'm being lazy. I'm kind of offended, actually. There are just things I don't do: I'm not lazy, I do NOT lie, and I'm almost never mean. It's just the way it is. So, like Mom said, if people go accusing me of those things, I can know in my heart (and maybe even say to them) that I am absolutely not whatever they say.
Lydia, you are definitely not lazy. It is really hard when someone only sees you for a short time - they do not get the "whole picture" of your struggles and accomplishments. We experience the same kind of problems and it is not fun.
ReplyDeleteYou are definitely not Lazy - you always seem to have something happening. Your Mom is so right, you can know in your heart that you are not lazy.
I can understand about not wanting to move away - especially so far away.
Hopefully the Waiver will get all processed soon so you can get the services that would make things better/easier for you.
Many positive thoughts and good wishes,
Mrs. E
Elsie was having fun with the keys, wasn't she? F5 and F11 are the full-screen keys, and they have had their uses over time. (My own cat was not a keyboard-jumper, except when he was young. Computers were introduced into his life when he was about a year old). And I try not to use Task Manager unless it's the computer equivalent of life-and-death. (Another reason to use a non-Windows system for at least some of your computing time).
ReplyDeleteGlad the bloodwork is only every three months. It could be more frequent.
As for when things got sour!
Dr J's words probably highlight (some of) the disadvantages of getting into the developmental disability system as an adult (as opposed to when one is a child, and as opposed probably to the physical/medical model), particularly in regard to work and occupation.
In regard to "high-functioning" (the term and what it means in life): there is a really wonderful link/Tumblr.
Just what is "high-functioning" when it's at home?
Stick to your guns and do not appease. Especially about how many hours and what you want to work at.
Have a feeling that it might be multiple things and they are not as easily quantifiable as laziness might be considered.
Probably the word for the traits you described in the last paragraph is scruplous or conscientious. (This is a word which comes up often in the discussion of obsessive-compulsive traits and personalities, particularly in the moral and religious side of life).
"I am conscientious, I am honest and I am kind and considerate of my feelings and those of others". (I would probably add "fair-minded" as well). Far, far easier to defend a positive than to [dis]prove a negative.
Finally, your statemate had a few words to answer the "You're not even trying" argument.
"Asperger syndrome through my eyes" of October 24th talks about some of the disadvantages of being diagnosed as a child or adolescent, and the interventions. He talks about demanding and pushy therapists and how important "real interaction" is. If I have a criticism, then it might be on the emphasis on "attitude".
So, working at the shelter and writing a book and maintaining your posts here and helping out parents with multiple questions and going to church and keeping Elsie P and all the other stuff isn't "enough" eh? I'd say it's been plenty. Why should you move away from your family? Why would she think you would do better away from all that you know and love? I don't believe she "thought" at all. You seemed to be doing OK in your own place before you got knocked sideways so with a little extra help to keep you on track I'm certain it'll work out better. It's not for want of you trying that's for sure.
ReplyDeleteYou are so not lazy, but you might need a new psychiatrist.
ReplyDeleteSeriously, though, I think that the other posters are totally on the money: you can be high functioning but not necessarily able to accomplish everything you need/want to because the way in which ASDs (and everyone has a different one, in that cruel way this autism thing works) wreak havoc with your neurobiology. I can see this with Hallie, quite a lot. Granted, she's only 4, but she gets so distracted by something sensorial that she cannot remember to pull her pants up after peeing, finish a task she is in the middle of, manage to make eye contact in a sustained way etc. Doesn't mean she isn't high functioning, though. We *might* (and emphasis here on the provisionality) be able to train her to focus more with lots of time and work, and maybe some drugs (she has a very strong potential for ADHD comorbidity) but I cannot say with confidence that she'll be able to live and work on her own when she grows up. Time and work will tell. And that's for a kid who started this journey at age 3.
Anyway, if you do end up in Philly, rest assured that you already have friends here (us). But the thing is that I would consider a second, more sensitive opinion. Dr. J. has an empathy problem (which is perhaps ironic, or maybe it goes iwth the territory; who knows?)
I think Mom's going to call Dr. J this week and explain that, like many people, she has been faked out by my intelligence and is failing to see the severity of my autism. She doesn't see that I'm held back much more than it first appears, and she thinks I can do more than I can do. It's a common error, and even she as a specialist has made it. Hopefully this clears things up?
ReplyDeleteAh yes, the old "autistic not stupid" conversation. I've had that one so many times I'm bored already and Bear is only 11.
ReplyDelete