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Executive Function -- Advice Needed of You SB Adults

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  • #16
    Thanks Jellolegs

    Thanks for your understanding. You hit the nail on the head, exactly. She is 19, and we are trying to let her make her own schedule, but it isn't getting done.

    Once she's on her own, I don't care if she wants to wear dirty clothes, live in a dirty house; she's an adult and has to learn consequences on that. It's the "basic care", cathing, meds, body checks, bowel, water drinking that we are most concerned with.

    I like the idea of a daily checklist or, as someone else mentioned, putting it in a smartphone calendar. I will encourage her to do this. It's her life, her body. I get it. She truly wants to be independent, and we want that for her, too. Her reward in this is praise on her independence.

    She wants to go away to school in two years. I just want to make sure she has the tools she needs to keep herself out of the hospital and successful in her life.

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    • #17
      mhaase,

      I understand she is 19 and you want her to be independent and she wants to do things her own way. The problem with letting someone with these issues make their own schedule is that it would never get done. She needs someone to sit down with her and help her make out this schedule but let her take the lead of what should be on it and when, obviously the medical care needs to be done on its own schedule and can't be altered. Otherwise, let her feel she is a part of this process and has a voice instead of it being done without her input and being forced on her. This is also largely an organizational problem. There are a few things playing in this situation; one is the large amount of tasks that need to be done on a schedule but there is no schedule set up so it needs to be broken down into smaller pieces so she can wrap her head around it better, two is once she knows that she has to break these tasks into smaller bits she is left with trying to organize how to break it down. That is why it is helpful to have someone sit down with her to help her organize this schedule. There could also be other things going on in this situation that we are not aware of yet but we will take that on as it comes. Once she has something set up she can hopefully take it from there. Does that make sense?

      I would also say that going to college and living independently are absolutely within her capabilities. I would recommend getting an organizational tutor for her when she goes to college to organize all her tests, homework, and study time. Some colleges offer organizational tutors as part of their disability services. Some colleges may call organizational tutors by different names.

      When I went to college I took all of my syllabi and wrote down on a calendar when all of my homework was due, when tests were coming up, and when projects/papers needed to be completed. I also wrote down on the calendar when I thought I needed to start each task so I could complete it on time. I did this with every single class until I graduated. I hung that calendar on my desk next to my bed so I would see it easily. I also had a tutor for every class so I had a schedule of when I would meet with someone to study and I could also ask questions if I had any. FYI, I believe this process helped me to graduate with honors.
      Last edited by jellolegs23; 02-21-2012, 02:59 PM.

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      • #18
        Excuse me, we are talking hydrocephalus and the potential loss off 'executive functioning', I didn't realise.
        Although who has full control of thier 'executive functioning' anyway.

        Excuse me again, but is there any room for your daughter to discover her level of functioning. I'm wondering, Jellolegs, what would your level of executive functioning be without the control of schedules, how dysfunctional would you be today? How long would it take for you to get to know yourself in relation to the world around you, without the discipline of having everything set out for you. Perhaps I'm considering the hard way?
        Jellolegs, at what point did you become the executive functioning person you seem to be? Executive functioning seems very subjective and I imagine it would apply to ? the majority of the population.
        Why 'make' people what they are not, it seems cruel to me....so they are not you or who you want and expect them to be...get over yourself.
        Excuse me again, but even without hydrocephalus, I know the lack of high functioning (I know it as), and the social dysfunction and the learning 'delays' and the expectations of the world around me (the greatest burdon).

        I'm just trying to stand up for an SB sister, all this control avoiding potentials to me is avoiding the inevitable.

        I was numb in my dilligent attempt to keep up with what was expected of me, until it shattered me. Demanding to be left alone, it was then that I discovered myself, learning how to "do it for myself". Now I can control and trust myself to maintain myself and my social world.
        Nothing done to me or for me worked. I guess I needed actual experience to learn.
        Schedules and programes, when you've got some high functioning delays going on, you soon become mind numbingly agreeable....I think that's all you learn, (as long as you're/they're happy).

        Perfection...then what?

        Sean.
        IF YOU'RE NOT MAD YOU'RE NOT SANE.

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        • #19
          Sean,

          I know exactly how lost I would be without schedules. I had that problem all throughout my 12 years of school and almost failed high school. Knowing your disabilities and figuring out ways to work around them is not a bad thing. Sometimes self-exploration is one of the best things you can do but not if it can cost you your education or health. I am one of the most stubborn people anyone has ever known and will sometimes do things the hard way just to prove a point but not everything has to be done in such a manner. If I am looking to prove a point and be stubborn I would rather do it through success and showing others I can do something than to be less diligent about it and fail. Proving your success makes a much stronger point and gives a message of intelligence and confidence.
          Last edited by jellolegs23; 02-21-2012, 09:31 PM.

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          • #20
            Thanks!

            I see both of your sides. While I do believe that there is plenty of room for self exploration, I see nothing wrong with providing tools and advice to assist. It really is up to her whether she wants to use the tools or not. Of course, as her mom, I will try to teach the upside to staying healthy, especially keeping track of medical stuff.

            Kelsey acknowledges herself that she struggles with multi-tasking. In fact, she drove for the first time yesterday, and she amazed herself that she was able to remember multiple things at once (mirrors, accelerator, signals, etc.). This gave her a tremendous boost in confidence, and I couldn't praise her enough.

            The goal here is to present tools, not to make her mindless. Trust me, she is pretty stubborn, and if she doesn't want to do something, she won't. However, she is self-aware, too.

            Disability or not, I believe there are methods we can all use to improve our functioning. I rely on advice in my business. If I didn't, I would flounder because there was something out there that could help me that I didn't know about. Learning about the tools available at least gives me options.

            Jellolegs, I agree with you on the assistance of organization. She should take the lead, but may need assistance in the organization part of it all. Let's face it, it can be overwhelming.

            Anyway, thank you to both of you. You have provided great insight to me.

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            • #21
              Just something that stuck out in my mind. You mentioned eating and drinking as a problem. Have you asked her if she just forgot or if she is actually hungry or thirsty? I know for me, I could go all day without doing either. I don't ever feel hungry. I actually have to force myself to eat at least once a day, because I'll just let it go because I'm not hungry. Come to find out it looks to be a chiari issue. At 28, I am exactly like your daughter. On my days off, if I don't have anything to do, I won't even get dressed. I personally see nothing wrong with that. Some people are just that way. Just because you aren't doesn't mean she should be as well. At her age, I just didn't cath because I didn't want to. It turns into a control thing. If I can control something I will. Eventually it will all work itself out. However, like some have said it is mostly a teen issue.
              Summer

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              • #22
                Thanks! also...I can now see where my attitude comes from...perhaps a lack of structure in my younger days.....and absolutely! it has somewhat turned my ???social development upside down. Noticable to me now as I'm an undergrad' student at 50+, occationally bewildered at the thought of, how, why this didn't happen for me in my teens. Not that I feel regret, now I see around 25yrs would have been my ideal age for tertiary study, and I am enthusiastic at this age, it feels like icing on the cake, confident and capable.
                Perhaps my experience is of that person, let go, as I likely demanded (of course it could be read as neglect and rejection) and as I've mentioned before, thrown to the wolves/society. It does sound rough and uncivilised today.

                And absolutely if I had a child..???...??..the military would be after them for thier organazational skills .

                Because of my sense of fulfillment, contentment and (at times annoying) happiness/humour today, I can have no regrets. I think life will be a celebration from now on......but......age is no longer on my side, (so I need to party hard, lol from now on).

                Great job providing tools, as long as they are without expectation/unconditional and not used against her...just something I know parents can do.

                Lovely to be in the company of such caring thoughtfull people, mhaase915 you seem like wonderfull parents, I wish you every joy and every success for Kelsey.
                Jellolegs, we seem to take different paths of how to go about life, but I feel a lot of parallels, stubborness, determination, less need to prove a point these days, but nothing has got in my way, for very long.
                You mentioned Sheldon from the Big Bang Theory (again no hydrochephaly), I have a ?Sheldon edge to my thought proccess (it could probably fit into some neat medical diagnosis), but I'm too smart to fall for that, lol. We are all sure to fall short of the current (scientific, medical, imperically theorised) criteria of 'something' considered abnormal about us......I could go on (like anyone is capable of listening, lol) but this is week 2 semester 1, lol

                Excuse me me me

                Cheers

                Sean
                IF YOU'RE NOT MAD YOU'RE NOT SANE.

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                • #23
                  I struggle with structuring my day when I don't have a schedule to keep. I find organising and planning difficult and get very overwhelmed when people give me several instructions at once.
                  I don't fhink the difficulties with executive functioning that SB/H cause are acknowledged as much as they should be. As a result, people get branded as 'lazy'.

                  This isn't talking about SB but it explains Executive Dysfunction https://m.youtube.com/watch?v=LQ5coA0tTJU&feature=share
                  Born 1981 with Spina Bifida Myelomenigocele. Full time wheelchair user.

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