Duh?? But I thought...
What is it like for those who are elderly and have AS? Not even sure what made me think of this. Are there a lot of symptoms of AS that are simply attributed to "aging," and lost on most people...maybe even the person with AS? :). Does AS become worse as we age, or does it seem to, because we ARE aging? Hmmmm... I've read on various pages and things, that it does seem to become worse as we age. I suppose it all depends. For instance, women (in particular) with AS, can have a lot of difficulty with fine motor skills and depth perception. They can also have poor muscle tone. Doesn't all this tend to get worse as we age anyway? Usually. But how much more profound would it be for someone who always had issues with these things, and aging is making it all much worse? Now, most people with AS tend to have very long memories; but oftentimes our short term memories really fail us. We must have things repeated for us many times. I know I need this a lot! :). In fact, this is how things make it into my long term memory. I'm pretty sure, this is how it works for NTs too, but as usual, for those with AS, it tends to be more frustrating and more profound.
Anyway, I know I have often gotten a reputation for not listening, not paying attention, and not caring what others are saying. I often can't retain what was said to me until I hear myself say it. I don't know why...I'll have to ask God one day. But anyway, people can become upset and frustrated with me... "I just said that!". That kinda thing. So, how is it when all of this is exacerbated by age? Sensory difficulties, sensitivity to light and sound; difficulty retaining what is said to you because your brain must process all that is going on around you, (stimuli)and it might be that the aging process has caused all these things to be even more profound than they already were. Can we have enough patience to say the same thing a thousand times... to be understanding when someone steps right on us or backs into us, because they literally don't know where their body is in terms of space? This is WEIRD, yes...at least, I think so. And I hate it! But it happens to me all this time! Can AS possibly be confused with Alzheimer's? I don't know. And I'm no doctor. This makes me wonder how much worse Alzheimer's is made if someone also has AS or HFA (??).
The thing is, it's expected that someone who is aging will have things like memory loss, moodiness, poor coordination and balance, that kinda thing. So how often are the intense challenges and struggles of someone with AS masked by aging? Add to this, the fact that many elderly people living with AS have been living with it all their lives... But nobody knew what it was! What do you have to tell yourself all your life just to make it through? How many elderly folks today just grew up with the label of "slow," "clumsy," or even "retarded"? Maybe they struggled socially and academically at school. Maybe boys were bullied terribly, but their parents just thought "Boys will be boys"? So can we discern AS or autism in an elderly person, and if so...how do we tell? I'm not sure. Hmmm...how would one even find out more about this? I wonder...
Wednesday, October 23, 2013
Monday, October 21, 2013
Almost There...(Still)
Duh?? But I thought...
I saw a You Tube video about a girl who has HFA. The video demonstrates a typical day for her, dealing with her sensory issues and normal worries. Her dad does a voice over, and says: "In some ways, I think her having HFA can even be harder than if she were severely Autistic; because, you seem to spend your whole life being almost there...and then the disability takes over, and she realizes again, that she didn't quite make it. Whereas, if a person is severely autistic, their limitations can be much more clearly defined, and also their abilities." I think he was trying to say that there may not be as many grey areas for someone with severe autism, and this can make things less complicated overall (??). Hmmm... I am thankful to God for all of the ability that I have. What a gift!
This morning I saw a FB post from a page dealing with Autism and AS, from a person who is worried because they are an adult now, and their parents are getting older. People around this person are telling them that they need to get their life together and be an adult (because of the age of their parents). I can relate. Personally, I know that God gives everyone different strengths and weaknesses for a reason. He places different people in our lives, not just because we need them, but because they need us too. But it's no mystery that Autistics often don't reach normal milestones that show development at the typical time that others around them do. Hey, in many cases we DO reach them, and we do it well. But I think we often feel an acute sense of alienation, because we seem to live so much of our life, "out of gear" from most around us. Now our lives are so full of specific mercies and graces that God tailors to our situation and circumstances. Things that we would never know, were it not for the "weaknesses" in our lives that allow his strength to show.
What happens when someone comes of age (as it were) and they've been of age for a long time, but are still dependent on adults in ways that they dearly wish they were not? What if there seems to be no way to fix it, and so they must give into the weakness and allow others to help them? What better way to demonstrate God's grace, right? But here's where the fear comes in: The adults around this adult are getting older, they're tired (maybe they're hurting because they can't do a lot of things they used to). The one thing those of us with disabilities do not want is to be a burden to those around us. It breaks our hearts when we start out with so much passion, drive and enthusiasm to do the right thing (this we have droves of energy for) and then we get that feeling of "drop" as we must come to the realization that our bodies and senses are not able to handle the day to day processes of... working an 8hr a day job, or driving a car, handling multiple directions at once, dealing with bright lights, loud noises, and the overwhelming feeling that we just want to hide under a blanket and cry. There's a torrent of questions that run through our minds all the time. Sometimes, one of them is: Do I completely suck as a human being?" Ouch.
Now, as depressing as this is, I think we ALL have asked this at times of ourselves. I'm not saying that this is exclusive to those with disabilities...it isn't. But as we with disabilities get older, it becomes harder and harder to deal with the "burden" that we are a burden to others, I think. Sometimes we hate the fact that we feel like a little toddler learning to walk and we need a stronger, wiser, more capable adult to lean on to help us up the stairs of life. Add to this, the fear that those who make up our support system ARE getting older. Sometimes we fear that they will die and leave us. Then what?? What do we do when we feel like we're sliding around on thin ice and we're only trying to keep from sliding. We need to hold somebody's hand for that, but we feel rotten for sort of "attaching" to someone else. We're an adult now, right? Many of us also have a "crippling" fear that those we have to depend on, might secretly hate us. Because we can't seem to grow up. We can't get our lives together. We seem to always need the same assistance for the same things, and so we are forced to find different ways of measuring our successes in life, that usually are not the more noticeable successes of most of those around us.
Who wants to live with a spirit of fear (especially when God has not given us a spirit of fear)? So the guilt becomes thicker. Sometimes it seems to eat at our hearts like a moth eats at an old sweater. We know, we can't attach to other people THAT much, so we develop other attachments, vices, and methods of coping that often are unconventional and can seem childish, even. We have a Heavenly Father who understands. Anyone, who wants to ask me why I believe in God, it's that simple. He is the empathy that I often do not show to others...and not because of any Autism. It's because I'm self centered and want my own agenda, with the least amount of complication. Hey, doesn't everybody?
I saw a You Tube video about a girl who has HFA. The video demonstrates a typical day for her, dealing with her sensory issues and normal worries. Her dad does a voice over, and says: "In some ways, I think her having HFA can even be harder than if she were severely Autistic; because, you seem to spend your whole life being almost there...and then the disability takes over, and she realizes again, that she didn't quite make it. Whereas, if a person is severely autistic, their limitations can be much more clearly defined, and also their abilities." I think he was trying to say that there may not be as many grey areas for someone with severe autism, and this can make things less complicated overall (??). Hmmm... I am thankful to God for all of the ability that I have. What a gift!
This morning I saw a FB post from a page dealing with Autism and AS, from a person who is worried because they are an adult now, and their parents are getting older. People around this person are telling them that they need to get their life together and be an adult (because of the age of their parents). I can relate. Personally, I know that God gives everyone different strengths and weaknesses for a reason. He places different people in our lives, not just because we need them, but because they need us too. But it's no mystery that Autistics often don't reach normal milestones that show development at the typical time that others around them do. Hey, in many cases we DO reach them, and we do it well. But I think we often feel an acute sense of alienation, because we seem to live so much of our life, "out of gear" from most around us. Now our lives are so full of specific mercies and graces that God tailors to our situation and circumstances. Things that we would never know, were it not for the "weaknesses" in our lives that allow his strength to show.
What happens when someone comes of age (as it were) and they've been of age for a long time, but are still dependent on adults in ways that they dearly wish they were not? What if there seems to be no way to fix it, and so they must give into the weakness and allow others to help them? What better way to demonstrate God's grace, right? But here's where the fear comes in: The adults around this adult are getting older, they're tired (maybe they're hurting because they can't do a lot of things they used to). The one thing those of us with disabilities do not want is to be a burden to those around us. It breaks our hearts when we start out with so much passion, drive and enthusiasm to do the right thing (this we have droves of energy for) and then we get that feeling of "drop" as we must come to the realization that our bodies and senses are not able to handle the day to day processes of... working an 8hr a day job, or driving a car, handling multiple directions at once, dealing with bright lights, loud noises, and the overwhelming feeling that we just want to hide under a blanket and cry. There's a torrent of questions that run through our minds all the time. Sometimes, one of them is: Do I completely suck as a human being?" Ouch.
Now, as depressing as this is, I think we ALL have asked this at times of ourselves. I'm not saying that this is exclusive to those with disabilities...it isn't. But as we with disabilities get older, it becomes harder and harder to deal with the "burden" that we are a burden to others, I think. Sometimes we hate the fact that we feel like a little toddler learning to walk and we need a stronger, wiser, more capable adult to lean on to help us up the stairs of life. Add to this, the fear that those who make up our support system ARE getting older. Sometimes we fear that they will die and leave us. Then what?? What do we do when we feel like we're sliding around on thin ice and we're only trying to keep from sliding. We need to hold somebody's hand for that, but we feel rotten for sort of "attaching" to someone else. We're an adult now, right? Many of us also have a "crippling" fear that those we have to depend on, might secretly hate us. Because we can't seem to grow up. We can't get our lives together. We seem to always need the same assistance for the same things, and so we are forced to find different ways of measuring our successes in life, that usually are not the more noticeable successes of most of those around us.
Who wants to live with a spirit of fear (especially when God has not given us a spirit of fear)? So the guilt becomes thicker. Sometimes it seems to eat at our hearts like a moth eats at an old sweater. We know, we can't attach to other people THAT much, so we develop other attachments, vices, and methods of coping that often are unconventional and can seem childish, even. We have a Heavenly Father who understands. Anyone, who wants to ask me why I believe in God, it's that simple. He is the empathy that I often do not show to others...and not because of any Autism. It's because I'm self centered and want my own agenda, with the least amount of complication. Hey, doesn't everybody?
Tuesday, October 8, 2013
Noises Off
Duh?? But I thought...
Sometimes what goes on inside is so all consuming that the physical body has no energy. Forgive me for the times I say way too much and seem to dump it all on your head. Quiet, sweet, full of wisdom...sure. But it feels like there's a volcano inside that threatens to erupt. It's energy, that I never seem to get rid of. When relaxing takes effort, you know you're in trouble, right? I wish I could run and run and run....but it's not going to happen. It's like there's another person and she's trapped inside me. The more she tries to get free, the more (she) is restrained. What do I do? It's like I'm underwater, swimming towards the surface, needing to concentrate...where is the top? Nothing can be released until I reach it. I finally make it, the air hits my lungs and this long scream wants to ring out. But it can't.
I must be reserved, in tact...and sociable. So, I am, I suppose...should I have a script? I just want to hold on to an idea, or thought...maybe one I had when I was "under the water.". Everyone wants to talk. Can I make room for what they want to say? I'll try. But excuse me if I need to step out. Sorry if I don't look at you or answer your question.
Don't worry, it is not your fault I want to just pull a blanket over my head. It's just too much? The light, the sound, the voices everywhere around.
My own thoughts won't leave me be, and I need to turn everything off.
Sometimes what goes on inside is so all consuming that the physical body has no energy. Forgive me for the times I say way too much and seem to dump it all on your head. Quiet, sweet, full of wisdom...sure. But it feels like there's a volcano inside that threatens to erupt. It's energy, that I never seem to get rid of. When relaxing takes effort, you know you're in trouble, right? I wish I could run and run and run....but it's not going to happen. It's like there's another person and she's trapped inside me. The more she tries to get free, the more (she) is restrained. What do I do? It's like I'm underwater, swimming towards the surface, needing to concentrate...where is the top? Nothing can be released until I reach it. I finally make it, the air hits my lungs and this long scream wants to ring out. But it can't.
I must be reserved, in tact...and sociable. So, I am, I suppose...should I have a script? I just want to hold on to an idea, or thought...maybe one I had when I was "under the water.". Everyone wants to talk. Can I make room for what they want to say? I'll try. But excuse me if I need to step out. Sorry if I don't look at you or answer your question.
Don't worry, it is not your fault I want to just pull a blanket over my head. It's just too much? The light, the sound, the voices everywhere around.
My own thoughts won't leave me be, and I need to turn everything off.
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