This post might seem like it jumps around, but the subjects are often very connected.
At least for me they are.
So please read the whole thing. Because I know that the beginning is going to ruffle some feathers. I don't mean to. Just because I have a different viewpoint doesn't mean one of us is wrong and the other right. It simply means we've had different experiences that have shaped our view. Sometimes they change with more experiences, sometimes they strengthen.
I wish we could talk about politics without people getting all bent out of shape, offended, and flaming angry.
At least for me they are.
So please read the whole thing. Because I know that the beginning is going to ruffle some feathers. I don't mean to. Just because I have a different viewpoint doesn't mean one of us is wrong and the other right. It simply means we've had different experiences that have shaped our view. Sometimes they change with more experiences, sometimes they strengthen.
I wish we could talk about politics without people getting all bent out of shape, offended, and flaming angry.
It's been such a big deal to us the past few years. And this is my journal, so I'm finally adding it.
Our state legislators have continued to cut services to the disabled... the local media doesn't look into it enough to show what it's really doing, and ends up making it look like all was restored. Which isn't at all reality.
People really have no idea how staggering a disabled person's expenses are, (unless they live it-obviously) especially when it involves developmental disability coupled with special health... which is typical. Disabilities most often come in bunches. It would wreck any one's financial plan and shred all a typical household's income in less than a year, if they had crappy or no insurance (extremely common now) or there were no state and national safety nets. Now times that by 2 or 3 or 6... some end up with several disabled children before they realize what's ahead, as in our case.
No parent who has disabled children would be able to say they knew it's what they'd be experiencing ahead of time. No one expects it. Even the best saver and planner would be blindsided by it. No matter how much people hate medicaid, it's truly needed. I don't doubt there are people on it that "could sober up and get a job and pay their own way." But exactly how is removing funds for those who actually do need it, preventing the frauds? It isn't. It only leaves the ones who need it unprotected.
I get that our government "can't afford it."
But it could afford it before.
So what's the difference now?
That's a whole other post that I most likely will never do. :)
People really have no idea how staggering a disabled person's expenses are, (unless they live it-obviously) especially when it involves developmental disability coupled with special health... which is typical. Disabilities most often come in bunches. It would wreck any one's financial plan and shred all a typical household's income in less than a year, if they had crappy or no insurance (extremely common now) or there were no state and national safety nets. Now times that by 2 or 3 or 6... some end up with several disabled children before they realize what's ahead, as in our case.
No parent who has disabled children would be able to say they knew it's what they'd be experiencing ahead of time. No one expects it. Even the best saver and planner would be blindsided by it. No matter how much people hate medicaid, it's truly needed. I don't doubt there are people on it that "could sober up and get a job and pay their own way." But exactly how is removing funds for those who actually do need it, preventing the frauds? It isn't. It only leaves the ones who need it unprotected.
I get that our government "can't afford it."
But it could afford it before.
So what's the difference now?
That's a whole other post that I most likely will never do. :)
We know others who have it much worse, they are the disabled adults, and the disabled of all ages living in cities where people do not value them, but see them as a means to use and abuse until they die. It makes my heart ache and tears flow to know that our disabled adults (vets included) are not being taken care of properly.
It makes me sob, when I hear of yet another disabled person being held captive and tortured for years, or yet another pure soul murdered.
The general public doesn't really understand. Part of it is assuming. Part of it is misinformation.
Why am I even mentioning this now, after all this time?
Three reasons.
It makes me sob, when I hear of yet another disabled person being held captive and tortured for years, or yet another pure soul murdered.
The general public doesn't really understand. Part of it is assuming. Part of it is misinformation.
Why am I even mentioning this now, after all this time?
Three reasons.
1. I'm in a battle I never saw coming. Because of our boys' overheating and overstimulating issues, I must have them at home most of the time. I keep trying it, and it always ends in the same cycle that requires days of doing nothing to recover. But the state put these restrictions that do not allow for such cases. They may end up losing their Developmental Therapy because of it. DT is something that they genuinely need. There is no "cadillac" here. It's an old beat up, worn and torn suburban.
As I've been dealing with that, I've had the misfortune of speaking with a few really rude state workers, who've refused to listen, used condescending drivel to explain their "reasoning," and been down right dishonest. Then some fortunate situations of kinder individuals. Thank goodness for them, at least.
2. I've seen hate filled posts on facebook even more than usual (which is pretty bad!!) about people in need, in general. Misconceptions, assumptions, lies, bigotry, you name it. So many disabilities are not obvious, but just as debilitating as if it were. If someone doesn't "look" disabled, it so doesn't mean they are just being lazy or crazy! Even the person with an addiction, shouldn't be discarded like trash. People who are struggling in any way, should be considered what they are- children of God in need.
People live up (or down) to what they are told repeatedly.
In no way am I sitting here finger pointing. I don't have any person in mind as I post. I do have specific stereotypes in mind, though.
Matthew 25 & Luke 10
I cannot watch this video below without sobbing. A person does not have to be bleeding, left on the ground for dead, for them to desperately need our love and concern.
http://www.lds.org/bible-videos/videos/parable-of-the-good-samaritan?lang=eng
3. I'm seeing more and more disabled and needy abuse and murder in the news. It's a sickening, evil, thick, stench creeping through our country.
Which leads me to the following...
I've seen posts before of suggested do's and don'ts when dealing with parents of disabled children. In no way am I trying to steal this... I doubt my blog is read by more than my family and a few friends.
This is my "list" that I try to live by daily, from my perspective. Some days I do well, some I fail miserably.
But the next day I start over again.
I've written it from the other perspective, because we deal with things often, and it has even led to severed relationships. :( Walking away from those in need of help, (even if that help is just a lack of judgement and desire to love) actually perpetuates the problem. It leads to an even bigger divide, at a time we need to be whole/united/one.
DON'T ASSUME ANYTHING NEGATIVE
It just makes trouble where there doesn't need to be. Often times our assumptions are at least partially off, or just plain way off. We have no way of knowing enough about a person or their situation to really know.
If something sounds off, ask, clarify... or assume the best.
DON'T COMPARE YOUR CHILDREN OR NEUROTYPICAL CHILDREN WITH OURS
This happens to us often.
It's painful and thoughtless to the child who is on the short end of the comparison.
Point out accomplishments instead.
No matter how tiny you many think they are, they are giant to the disabled child and required enormous faith, desire, hard work, and determination to accomplish.
Now that's worth pointing out!
BE GENTLE/KIND/FORGIVING
Parents of disabled children are severely sleep deprived- yes, even more so than with typically developing kids. We also often have health issues of our own that can be not so noticeable. So we will say stupid things- doesn't mean we are stupid. We will say things that come across totally different than we meant- doesn't mean we are picking a fight. We will lose things, and cry at the drop of a hat. Be patient and understand it's the sleep deprivation, not us.
FORGIVE YOURSELF
Our life is not normal at all.
We feel so isolated from the world.
This means you will say and do things that will be so inappropriate for our situation.
Learn from the goof, apologize, genuinely try to not do it again, and move forward. It's no reason to walk away from us, or refuse to change.
KNOW THAT YOU WILL BE BLESSED, BUT NOT IN WAYS YOU'D EXPECT
Getting to know those with disabilities and being a part of their daily life is an immeasurable blessing. There just are no words for the knowledge and light they provide, if you allow it.
My precious boys have changed me deeply, and I am eternally grateful.
They are my joy.
Hopefully my sleep deprivation and wonky head (aka warn out from all the migraines and seizures) didn't keep me from expressing what I really wanted to here.
If it did- oops, sorry! I'll try again later.
Hugs :)
2. I've seen hate filled posts on facebook even more than usual (which is pretty bad!!) about people in need, in general. Misconceptions, assumptions, lies, bigotry, you name it. So many disabilities are not obvious, but just as debilitating as if it were. If someone doesn't "look" disabled, it so doesn't mean they are just being lazy or crazy! Even the person with an addiction, shouldn't be discarded like trash. People who are struggling in any way, should be considered what they are- children of God in need.
People live up (or down) to what they are told repeatedly.
In no way am I sitting here finger pointing. I don't have any person in mind as I post. I do have specific stereotypes in mind, though.
Matthew 25 & Luke 10
I cannot watch this video below without sobbing. A person does not have to be bleeding, left on the ground for dead, for them to desperately need our love and concern.
http://www.lds.org/bible-videos/videos/parable-of-the-good-samaritan?lang=eng
3. I'm seeing more and more disabled and needy abuse and murder in the news. It's a sickening, evil, thick, stench creeping through our country.
Which leads me to the following...
I've seen posts before of suggested do's and don'ts when dealing with parents of disabled children. In no way am I trying to steal this... I doubt my blog is read by more than my family and a few friends.
This is my "list" that I try to live by daily, from my perspective. Some days I do well, some I fail miserably.
But the next day I start over again.
I've written it from the other perspective, because we deal with things often, and it has even led to severed relationships. :( Walking away from those in need of help, (even if that help is just a lack of judgement and desire to love) actually perpetuates the problem. It leads to an even bigger divide, at a time we need to be whole/united/one.
DON'T ASSUME ANYTHING NEGATIVE
It just makes trouble where there doesn't need to be. Often times our assumptions are at least partially off, or just plain way off. We have no way of knowing enough about a person or their situation to really know.
If something sounds off, ask, clarify... or assume the best.
DON'T COMPARE YOUR CHILDREN OR NEUROTYPICAL CHILDREN WITH OURS
This happens to us often.
It's painful and thoughtless to the child who is on the short end of the comparison.
Point out accomplishments instead.
No matter how tiny you many think they are, they are giant to the disabled child and required enormous faith, desire, hard work, and determination to accomplish.
Now that's worth pointing out!
BE GENTLE/KIND/FORGIVING
Parents of disabled children are severely sleep deprived- yes, even more so than with typically developing kids. We also often have health issues of our own that can be not so noticeable. So we will say stupid things- doesn't mean we are stupid. We will say things that come across totally different than we meant- doesn't mean we are picking a fight. We will lose things, and cry at the drop of a hat. Be patient and understand it's the sleep deprivation, not us.
FORGIVE YOURSELF
Our life is not normal at all.
We feel so isolated from the world.
This means you will say and do things that will be so inappropriate for our situation.
Learn from the goof, apologize, genuinely try to not do it again, and move forward. It's no reason to walk away from us, or refuse to change.
KNOW THAT YOU WILL BE BLESSED, BUT NOT IN WAYS YOU'D EXPECT
Getting to know those with disabilities and being a part of their daily life is an immeasurable blessing. There just are no words for the knowledge and light they provide, if you allow it.
My precious boys have changed me deeply, and I am eternally grateful.
They are my joy.
Hopefully my sleep deprivation and wonky head (aka warn out from all the migraines and seizures) didn't keep me from expressing what I really wanted to here.
If it did- oops, sorry! I'll try again later.
Hugs :)
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