Inside out
Living with a person with a disability means that your life is exposed, really exposed.
We are required to have an open door policy to people that you normally wouldn't want anything to do with; but you deal with them only because that's what you've got. There are a lot of people that take advantage of it and think it's funny, cute or just don't think it all.
That is the most tragic part of everything because those of the people that don't know you or your situation. Most of the time people think they know what's going on. Truthfully as the parent living it; the parents don't really think do you understand what has happened to the parents lives. No, these outsiders don't know squat. The people looking in believe that the parents of a disabled person are trying to be something they are not or even better, arrogant and self absorbed.As I have said to several friends, "If someone believes we are superficial, arrogant and self absorbed, fine. They can believe that and we will behave that way towards them and not show a different side to us."
It only shows how little they really know us and if that is what they think then we really don't need to be bothered with them anyway.
I think that being out-side and looking in, the outsiders don't really understand people with disabilities or the families of people with disabilities. In reality the outsiders really know nothing at all about their supposed extended family members and more than likely could care less. The way things are going I think that is just fine with me.
Another thing, we are working really hard and figuring out what to do and what changes to make for future things and you know what? it is hard. At this point there is absolutely no one we would trust with the boy's future and we know we have to come up with something and we are at a total loss. Each time we did make a choice that person acted like they owned us and could do or say whatever they wanted and we were not allowed to react or have an alternate opinion. Now we are at square one again and I am ready to name one of the cats - I believe that the cats are a better choice than what we had chosen. Trouble could do an excellent job with his big expressive kitty eyes.
Recently when I flat out said that most of our neighbors don't talk to us because we are the parent of "that kid" the look of disbelief was surprising. This look was from the same person who appears to have perfection as a daily life thing. On my end I wonder how the hell life perfection like that happens. How is it that some people have to work their asses off to get what ever they have and do and others just get life handed to them? Truthfully I have only 1 regret in the last 20 or so years and that is allowing someone unworthy in my life. I ignored the red flags and I really messed up with trusting someone I knew was using me. In another instance, I mistakenly allowed said person to upset me when they were being abusive towards the cute one. That person was not worthy of my attention and we should have left the abusive environment when the abuse occurred.
Going back to the parenting an Aspie, the cuter half once wrote about what it was like to be a parent of an Aspie - and I am including it here:
We are required to have an open door policy to people that you normally wouldn't want anything to do with; but you deal with them only because that's what you've got. There are a lot of people that take advantage of it and think it's funny, cute or just don't think it all.
That is the most tragic part of everything because those of the people that don't know you or your situation. Most of the time people think they know what's going on. Truthfully as the parent living it; the parents don't really think do you understand what has happened to the parents lives. No, these outsiders don't know squat. The people looking in believe that the parents of a disabled person are trying to be something they are not or even better, arrogant and self absorbed.As I have said to several friends, "If someone believes we are superficial, arrogant and self absorbed, fine. They can believe that and we will behave that way towards them and not show a different side to us."
It only shows how little they really know us and if that is what they think then we really don't need to be bothered with them anyway.
I think that being out-side and looking in, the outsiders don't really understand people with disabilities or the families of people with disabilities. In reality the outsiders really know nothing at all about their supposed extended family members and more than likely could care less. The way things are going I think that is just fine with me.
Another thing, we are working really hard and figuring out what to do and what changes to make for future things and you know what? it is hard. At this point there is absolutely no one we would trust with the boy's future and we know we have to come up with something and we are at a total loss. Each time we did make a choice that person acted like they owned us and could do or say whatever they wanted and we were not allowed to react or have an alternate opinion. Now we are at square one again and I am ready to name one of the cats - I believe that the cats are a better choice than what we had chosen. Trouble could do an excellent job with his big expressive kitty eyes.
Recently when I flat out said that most of our neighbors don't talk to us because we are the parent of "that kid" the look of disbelief was surprising. This look was from the same person who appears to have perfection as a daily life thing. On my end I wonder how the hell life perfection like that happens. How is it that some people have to work their asses off to get what ever they have and do and others just get life handed to them? Truthfully I have only 1 regret in the last 20 or so years and that is allowing someone unworthy in my life. I ignored the red flags and I really messed up with trusting someone I knew was using me. In another instance, I mistakenly allowed said person to upset me when they were being abusive towards the cute one. That person was not worthy of my attention and we should have left the abusive environment when the abuse occurred.
Going back to the parenting an Aspie, the cuter half once wrote about what it was like to be a parent of an Aspie - and I am including it here:
The neuro-typicals have no idea the level of structure we must incorporate into our lives.
Oh the joy to have the luxury of saying we leave next week, later today or even tomorrow. To the neuro-typical these are acceptable answers, to us it is a maddening nightmare, interrupting a closely kept routine, as we are expected to be available to join them. (“But when tomorrow, Dad? What time today, Dad? I need to plan, I need to pack, I need my travel guides so we can go to a “Diners, Drive-In or Dive” on the way!”) We wake at our house promptly at 6:43 and bed time is 10:13, we have to plan our days and trips ahead and must inform the Boy, regarding the minutest details, or things do not go well. Oh the joy we would have if we could drop everything and plan a spur of the moment dinner. But we can not and a phone call at 7:05pm saying we are leaving now for dinner meet us in 20 minutes is not going to be meet with a rousing “See you there.”
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