First I encountered doctors, and I was banking on that they would have answers on what they told me. And don’t just accept what they say, unless your gut instinct tells you otherwise. Then there’s the school system, This is definitely a learn as you go journey and a parent must be informed, otherwise the child just becomes a pawn in the system.
Currently I’m working on forming a parent advisory council for our local school district and our Special School District so that these two districts can work collaboratively.
Going out into the community and around peers my son’s age becomes challenging as well. Openmindedness is imperative because my 14 year old son is very similar to other 14 year olds, however his brain is wired differently and does things unlike what other 14 year olds do, yet he likes to be around his nondisabled peers, even though they don’t interact much with him
Tuesday, September 30, 2008
The Family Structure Of Having A Child With A Disability
Some families make it as a whole and some don’t. Mine unfortunately was one that is now a statistic. Our son was by no means the cause of the marital split after almost 19 years of marriage, however, it definitely puts strain if both parents aren’t mutually agreeable and communicative generally across the board.
For some families also such as mine, it includes having my son being dependent on me and his dad for his whole life. It raises sibling concerns, extended family support, state funding sources, personal care attendants in and out of our home. I am truly blessed with personal care attendants at this point in time that I can trust, and it’s like they become a part of our family. They have seen me in raw form in mores ways that
For some families also such as mine, it includes having my son being dependent on me and his dad for his whole life. It raises sibling concerns, extended family support, state funding sources, personal care attendants in and out of our home. I am truly blessed with personal care attendants at this point in time that I can trust, and it’s like they become a part of our family. They have seen me in raw form in mores ways that
What's Life Like, Having A Child With A Disability
Well the most fun way to describe it is like riding a loop de loop rollercoaster, including the laughing, screaming, and heart dropping. Heart dropping would be when my son escaped from the back yard when someone left the gate open and he has an unawareness of danger.
The initial emotions were grief, apprehension and the discomfort of being around normal kids and so concerned about what everyone thought about my child. It took me nine years, just because of my lack of personal development, before I felt completely OK with having a child with a significant developmental disability.
The initial emotions were grief, apprehension and the discomfort of being around normal kids and so concerned about what everyone thought about my child. It took me nine years, just because of my lack of personal development, before I felt completely OK with having a child with a significant developmental disability.
Why Is The History of People With Disabilities Important
Just like anything, you are where you are because of your history, and history shapes the future. What we believe is important today will have an impact on what happens tomorrow.
- It wasn’t until the 1950’s that parents began to break ground and take a stand for their children.
- 1960’s politics became involved. During JFK’s first year in his presidency, he formed the President’s Panel on Mental Retardation. In respect to people who have mental retardation this Panel was renamed five years ago. It is now called The President’s Committee for Intellectual Disabilities. John F. Kennedy’s policymaking was directly inspired by his oldest sister, Rosemary Kennedy who had mild mental retardation and lived to be 86 years old.
- 1970’s Deinstitutionalization began. Up to this point about 128,000 people with disabilities were institutionalized. Can you imagine that? The notion of least restrictive environment-LRE, self-advocacy, and the independent living movement began to emerge. In 1975 IDEA-Individuals with Disabilities Education Act was enacted.
- 1980’s The U.S. Supreme Court rules in favor of group homes in neighborhoods, deinstitutionalization continues to decrease and major strides are made in employment.
- 1990’s Some states are institution free. The goals of inclusion, choice and self-advocacy are pursued with vigor.
- 2000 New community and family living amendments pass. ADA-American with Disabilities Act ensures no restrictive public environments.
Monday, September 29, 2008
The History of People with Developmental Disabilities
It wasn’t until February of earlier this year that I was jolted by the exposure to the history of people with developmental disabilities. Talk about going into a sudden plight of brief depression. It was extremely eye-opening and mind boggling to me on how this scope of humanity could be maltreated; not nearly as bad as the Hitler era, yet the same concept of being eye-opening and mind boggling and the horrible treatment of human beings.
Since the inception of man, there have always been people who have developmental disabilities, or they became disabled through TBI-traumatic brain injury, war, or some type of accident. So where have these people been? What a great question? I know for me when I was growing up, which was in the heart of the Midwest—E.St.Louis, IL/ St.Louis, MO, I remember a school bus driving down the freeway, and for some odd reason, I just knew that “those” kids weren’t like my brothers and sisters and I. Never in that moment in time did I even entertain the thought that some day my son would be one of “those” kids. In answer to the question of where have they been, they have been stowed away, ridiculed and even put to death, with just a number on their tombstone as their identity.
Since the inception of man, there have always been people who have developmental disabilities, or they became disabled through TBI-traumatic brain injury, war, or some type of accident. So where have these people been? What a great question? I know for me when I was growing up, which was in the heart of the Midwest—E.St.Louis, IL/ St.Louis, MO, I remember a school bus driving down the freeway, and for some odd reason, I just knew that “those” kids weren’t like my brothers and sisters and I. Never in that moment in time did I even entertain the thought that some day my son would be one of “those” kids. In answer to the question of where have they been, they have been stowed away, ridiculed and even put to death, with just a number on their tombstone as their identity.
Why People With Developmental Disabilities Are Cool?
These folks are funny, they have meaningful insight, lovable, and just want to have fun too. It just takes a bit more time and patience to interact with them, and quite frankly, this last phrase is true of most meaningful relationships, if you catch my drift.
I had the pleasure of meeting a man who is blind. He doesn’t actually have a developmental disability because he was burned when he was a young adult and consequently became blind. His face became a bit deformed from the burn and he wears sunglasses to hide the deformity. He had me in stitches because he said that for Halloween he doesn’t need a mask because he scares the trick-r-treaters by just removing his glasses. So after he said that I got the nerve to ask him to remove his glasses, because up to this point I wondered why he wore the glasses. Well, my laughing stopped abruptly because at that moment I fully understood why the kids got scared. I asked him if he knew how he looked and he said “no, am I really that scary?” Talk about how to respond to that question.
I had the pleasure of meeting a man who is blind. He doesn’t actually have a developmental disability because he was burned when he was a young adult and consequently became blind. His face became a bit deformed from the burn and he wears sunglasses to hide the deformity. He had me in stitches because he said that for Halloween he doesn’t need a mask because he scares the trick-r-treaters by just removing his glasses. So after he said that I got the nerve to ask him to remove his glasses, because up to this point I wondered why he wore the glasses. Well, my laughing stopped abruptly because at that moment I fully understood why the kids got scared. I asked him if he knew how he looked and he said “no, am I really that scary?” Talk about how to respond to that question.
People With Developmental Disabilities Are Cool Too!
I have been blessed with having a son who is now 14 years old who has significant developmental disabilities. I say blessed because it has been and continues to be a journey that has lead me to meet super cool people, that 14 years ago, I wouldn’t have dared to think to approach.
So what does significant developmental disabilities mean? Developmental disabilities come in all shapes and sizes. I’m in no way poking fun, it’s just a way to describe it with a lighter connotation. Significant signifies that the person most likely needs support in all of his basic activities of daily living (ADL) because of his level of cognitive or physical ability. Activities of daily living include personal care and basic daily needs- eating etc.
Developmental disabilities include an array of labels such as autism, cerebral palsy, Willie-Prader syndrome, Down syndrome, hearing loss, Tourette’s syndrome, Angelman syndrome, and the list goes on. These labels don’t change who the person is, because that’s all they’ve known anyway, it just attaches identity to them for societal purposes.
I wouldn’t go up to someone and introduce myself, and say, “Hello, I’m Cristina, and I have diverticulosis” not that I do. Just as people who have developmental disabilities need not justify any such disclosure either.
When I say that they are cool too, it’s because everybody wants to feel “cool” in some way or another, and these folks definitely have “cool” too. I recently completed a training session called Partners in Policymaking in Columbia, MO. Almost all states provide this training session. It’s one weekend once per month for an eight month commitment. So you get to know the 25 participants quite well. About 1/3rd of the participants have developmental disabilities and this where I really learned about how cool these people are!
So what does significant developmental disabilities mean? Developmental disabilities come in all shapes and sizes. I’m in no way poking fun, it’s just a way to describe it with a lighter connotation. Significant signifies that the person most likely needs support in all of his basic activities of daily living (ADL) because of his level of cognitive or physical ability. Activities of daily living include personal care and basic daily needs- eating etc.
Developmental disabilities include an array of labels such as autism, cerebral palsy, Willie-Prader syndrome, Down syndrome, hearing loss, Tourette’s syndrome, Angelman syndrome, and the list goes on. These labels don’t change who the person is, because that’s all they’ve known anyway, it just attaches identity to them for societal purposes.
I wouldn’t go up to someone and introduce myself, and say, “Hello, I’m Cristina, and I have diverticulosis” not that I do. Just as people who have developmental disabilities need not justify any such disclosure either.
When I say that they are cool too, it’s because everybody wants to feel “cool” in some way or another, and these folks definitely have “cool” too. I recently completed a training session called Partners in Policymaking in Columbia, MO. Almost all states provide this training session. It’s one weekend once per month for an eight month commitment. So you get to know the 25 participants quite well. About 1/3rd of the participants have developmental disabilities and this where I really learned about how cool these people are!
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